tag:blogger.com,1999:blog-79262936677514542562024-03-14T01:29:01.214-04:002 Pirates and a PrincessThe ramblings of a mommy whose brain is distorted by dealing with her two wild pirates and her banshee princess, their stressed-out daddy, and all the special needs that abound in our household (Down syndrome, food allergies, dyslexia, and Crohn's disease, to be specific...).FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.comBlogger675125tag:blogger.com,1999:blog-7926293667751454256.post-15601491771181791062018-10-13T21:20:00.001-04:002018-10-13T21:27:26.059-04:00Preparing for the Bat Mitzvah<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The evening we got our amnio results back, I wrote a letter to my not-yet-born daughter. In the letter I wrote that I was only worried about a couple of things. Her health was a concern, but I was hopeful, and we have been fortunate in her good health to this day. And then I said “I worry about your Jewish education. How do I make sure that you feel the joy that the rest of us do about Judaism?”</span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Inculcating a love of Judaism has been a key goal in my parenting journey. I want all of my children to love being Jewish, to be knowledgeable about our history and about our practices. Why should my daughter’s knowledge and love be any less important than that of her brothers?</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I was already a member of Temple Israel of Natick before I even met David, and I was fortunate that he felt comfortable there also. Our boys both attended nursery school at TI. When we let our community know that our third child would have “a little something extra” (an extra 21st chromosome, in fact), members of the community threw us a Baby Seder, with prayers and offerings of future support for our family and children. Once Sofia was born, we were overjoyed to celebrate her </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Simchat Bat</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (naming ceremony) at Temple Israel also.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Well, of course not every parenting plan works out the way you expect. Sofia did not attend nursery school at our </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">shul</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, because the program just did not offer all of the therapeutic extras she needed, while the public school’s preschool could provide things like speech, occupational and physical therapies. But she came with us to Shabbat morning services regularly, and enjoyed participating in the programs for children and families.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">When it came time for kindergarten, it was clear our day school, MWJDS, would not have everything she needed, either. But what they did have was the Judaics program. So we worked out a creative compromise. Sofia attended the public school, but for the first three years, from kindergarten through second grade, she was also a part-time student at MWJDS. Twice a week she would leave school at noon to head to the day school, to be part of the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Se’orah*</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> class for Judaics, music, art and gym. The girls in the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Se’orah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> class continue to be her friends to this day. (*At MWJDS, each class takes the name of one of the seven species of fruits mentioned in the Torah, and that name stays with them from kindergarten through graduation after 8th grade.)</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In third grade, Sofia moved to the upper elementary school, and the typical curriculum at both schools became too difficult for her to access. We spent the year working on her mastery of English reading, writing and speaking. In fourth and fifth grade, Sofia joined the Temple Israel Religious School on Sunday mornings and Wednesday afternoons. I worked with the staff to create an alternate curriculum which Sofia could work on when her classmates were doing something that she would not be able to do. In fourth grade it worked fine, but in fifth grade, as the typical curriculum was even more text-based, Sofia spent most of her time in the chapel, working 1:1 with her wonderful teacher, “Hamorah Margalit” (</span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Hamorah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> means “The Teacher” in Hebrew). They did a lot of “Godly Play”, an approach that helps children to explore their faith through story, to gain religious language and to enhance their spiritual experience though wonder and play. They also began practicing some of the prayers and rituals Sofia would need to know for her </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">bat mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Meanwhile, our family continued to attend Shabbat and holiday services regularly, and enjoyed many Shabbat meals with friends. Sofia learned the basics of the Friday night dinner table </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">seder</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (</span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">kiddush</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, washing hands and </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">motzi</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">) by rote and loved being the Shabbat Princess (based on one of her favorite storybooks).</span></span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In sixth grade, the opportunity arose for Sofia to participate in a Gateways-style class nearby. Gateways: Access to Jewish Education provides services to promote the meaningful inclusion of individuals of all abilities in Jewish life. But I had always harbored some resentment for the idea of sending Sofia to Gateways, since it was a long drive and had been explained to me early on as being “for kids who can’t be serviced in their home community.” I wanted Sofia to be able to learn in her own community; to have local friends who she would see not just in class but in her regular life, going to shul and having fun together.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The CHESED program (Community Hebrew Special Education) was held at the nearby Framingham Conservative synagogue, Temple Beth Sholom. We thought that there would be two </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">b’nei mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> students in that first year, Sofia and another girl with Down syndrome, but the other girl ended up not participating, and Sofia was the only </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">bat mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> student on Tuesday afternoons. On Sunday mornings she attended the CHESED program with two other boys (both of whom are also TI members); neither are her age and neither provided any social interaction for Sofia. But with only three kids in class, the teacher (my colleague at MWJDS, Hamorah Amy) was able to present Jewish topics in creative ways that allowed Sofia to learn.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">I worked with Hamorah Amy and her team, along with Cantor Ken from TI, to design materials that Sofia would use for her </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">bat mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. The siddur was based on the Gateways model, but we offered Sofia the particular prayers that would be most appropriate for our service at Temple Israel. Cantor Ken, Rabbi Liben and I fine-tuned a potential list of prayers for Sofia to study. We put things in order: she absolutely HAD to learn the blessings for the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">aliyah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, it would be great if she could do the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Shema/Echad/Gadlu</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> sequence for taking out the Torah, it would be nice if she could lead </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">kiddush</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, etc.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We had selected Sofia’s </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">bat mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> date back at the end of fourth grade (which is when we get our dates at TI). Although her birthday is in February, we decided to have her </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">bat mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> the following school year, so that she would be with her religious school classmates for the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">b’nei mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> year. We selected </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Parashat Bereshit</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, the very beginning of the Torah, for a couple of reasons. I felt that Sofia would be able to understand Chapter 1’s version of the creation story, in which God creates the world in six days, making order from chaos, and then rests on the seventh day, Shabbat.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">parasha</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> would fall on October 6 in 2018, Sofia’s seventh grade year. Which happened to be the Saturday of Columbus Day weekend. And also the day before the MDSC Buddy Walk! It seemed like it would be a perfect time for out-of-town guests to come to New England, enjoy the fall foliage, and join us at the Buddy Walk as Sofia’s </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> project.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The last few months of the spring, with Hamorah Amy out sick, the Temple Beth Sholom religious school director, Geri, took over working with Sofia. Together, they created seven large murals, depicting the seven days of creation. Geri and I settled on the text of בְּרֵאשִׁית </span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In The Beginning</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, adapted by Alison Greengard, illustrated by Carol Racklin-Siegel, a children’s book adaptation of the Torah, Genesis chapter 1 and the very beginning of chapter 2. I made a few edits to the text, to add gender neutral language and remove some words that were more challenging for Sofia to read.</span></span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Over the summer, Sofia and I practiced and practiced. We narrowed her parts down to:</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Friday night </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Kiddush</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (which she mostly knew by heart, but I added a print version), the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Shema/Echad/Gadlu sequence</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> for taking out the Torah, the blessings before and after the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">aliyah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, the adapted English text about the seven days of creation (which would be her </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">d’var</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> Torah speech), the Shabbat morning </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">kiddush</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, and the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">al netilat yadaim</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> and </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">hamotzi</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> blessings. Sofia practiced nearly every single evening from July through September!</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In mid-September, we added a new tool: a Torah pointer </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">yad</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. Sofia was becoming increasingly comfortable doing each piece on her own, and would wave me off, saying “I do it!”, but she refused to use her finger to follow along in the text. When I gave her the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">yad</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, however, she loved it, and used it for both the English and the (transliterated) Hebrew.</span></span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">What about Friends?</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">It turns out Sofia is a bit of a Queen Bee in seventh grade at the public school. She has a coterie of girls - and boys - who hang out with her for lunch, recess, and any other opportunity, basking in her sassiness and following her every command. At the end of sixth grade, since the public school could not (by their privacy rules) let me know the names of any of these kids, I wrote an open letter to the parents, saying basically “your kid plays with mine and we would love to invite him/her to the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">bat mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, so please contact me with your address.” The teachers identified nearly 20 kids who merited these letters, and all the parents were eager to send me their child’s address!</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Aside from the public school gang, and the girls from the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Se’orah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> class at MWJDS, and the kids in the SubSeparate class, and the gang from Special Olympics gymnastics, and a miscellaneous collection of other buddies with Down syndrome, we also invited the entire </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Gesher</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> class, the religious school kids now in their </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">b’nei mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> year. Being part of the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Gesher</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> class means two things: being part of the class gift (a special </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">chanukiyah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> for each kid, thereby removing the need to get a different gift for each kid) and being invited to all the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">b’nei mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> parties when possible.</span></span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The Invitation</span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Because I’m an uber-geek when it comes to this stuff, of course I designed the invitation myself. For each of my kids, I wanted to include a Hebrew quote, and for Sofia, the one that seemed best was:</span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">חָבִיב אָדָם שֶׁנִּבְרָא בְצֶלֶם.</span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Beloved is the person, created in the image of God.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The multiple bright colors of the invitation seemed very well-suited to represent Sofia. Add an elegant script (in purple, of course). On the back of each invitation, we invited everyone to join us the day after the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">bat mitzvah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> as part of Sofia’s Bat Mitzvah Team at the MDSC Buddy Walk.</span></span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">As part of the invitation, I included a card to all the kids:</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Dear Parents,</span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">You know your child best. If you feel that he or she would benefit from having a caretaker present at the party, by all means please join us! Please let us know who will be attending with your child, and whether that person should sit with the children or at a grown-up table nearby.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">(Read about the actual day of the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">bat mitzvah</span><a href="http://fbfrothkopf.blogspot.com/2018/10/the-actual-bat-mitzvah.html" style="text-decoration: none;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> </span><span style="background-color: transparent; color: #1155cc; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline; white-space: pre-wrap;">here in my previous blog post.)</span></a></span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">x</span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Between all the family, our work colleagues, Sofia’s friends and our friends, we sent out over 200 invitations! We discovered that many people are REALLY bad at RSVPing on time, but eventually we accounted for nearly everyone - and lots and lots of people planned to attend!</span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Thursday, October 4, 2018: The Practice Minyan</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Since David has been going to morning minyan this year to say </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">kaddish</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> for his father, he wanted us to all go on Thursday morning so Sofia could have a “practice” run. It was great. She would not cooperate and sit in a chair, just sat on the floor tossing Woody, but when it was time to take out the Torah, she jumped right up. The chapel is small, there were only about a dozen other people besides us, so it wasn’t too crowded, and Sofia made sure she went around the table to everyone could reach the Torah. Her tallis was a bit lopsided, so she nearly tripped!</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Sofia’s brother, Micah, was the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Gabbai Sheini</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> that morning, and he may have been even more proud than his parents as he watched his sister have her </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">aliyah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">.</span></span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Sofia recited the blessings perfectly. She was beaming with pride when she was done. And she got to carry the Torah again at the end.</span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Friday, October 5, 2018</span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The five of us (Sam came home from college on Thursday night) gathered at the synagogue on Friday at 4pm to take photos. The Rabbi and the Cantor joined us for some pictures, and Sofia and I managed a couple of dress changes so we could get formals in our party dresses as well as our morning dresses (and my Friday night dress). Sofia looked so lovely with her hair curled and a little makeup to bring out her lovely features.</span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Between photos and services, David and Micah raced to the mall to get some watch batteries (for me and for Micah) while Sam and I set the tables for our dinner, which was after services. Sofia played with Woody and relaxed for a bit.</span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><img height="320" src="https://lh4.googleusercontent.com/IkaxSRyxWr26sDtJYod-0Il3zOSg2sy0sJXCb2QgIVNlA1UeaumYT618aAdi3GrBrWpanjXUYQS-KcX7ruqYRAzhStZVvwaDczhp685glnae9VMX88fepMWciKw0_ng4m8cwPBCD" style="-webkit-transform: rotate(0.00rad); border: none; transform: rotate(0.00rad);" width="427" /></span></div>
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<span style="background-color: transparent; color: black; font-family: Georgia, Times New Roman, serif; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">There were not too many people at services on Friday night. Many of our guest who were driving in were very late due to a big traffic jam on the Mass Pike. We had some friends and family at a nearby hotel, some having home hospitality nearby, and some staying at our house. All in all we had about 30 guests, plus the congregation.</span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">For services, Sofia started out sitting on the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">bimah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, even though Cantor Ken was standing down on the floor. Eventually, Sam convinced Sofia to sit next to the Rabbi in the front row. She sat in the chair in front of me, tossing and twirling Woody. But she sat quietly.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Then it was finally time for </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Kiddush</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. Sofia and I went up to the </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">bimah</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> and set up her book. I stood to her side, and chanted softly so she had a guide, but she recited the words strongly (if not always clearly) into the microphone, only smiling triumphantly when she was done.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We had a lovely Shabbat dinner. Two of my friends acted as kitchen staff so I could enjoy visiting with our guests. It was lovely to see everyone. Micah and I joined the friends table for </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Birkat Hamazon</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (I spent most of the meal at that table) and I loved every minute. Sofia ate with her cousins, and eventually ended up back on the floor, tossing Woody.</span></span></div>
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<span style="font-family: Georgia, Times New Roman, serif;"><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We had fun shmoozing, and finally left shul around 8:30. I was exhausted - Sam and I had been at </span><span style="background-color: transparent; color: black; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">shul</span><span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> all morning to set up, and I had to curl Sofia’s hair, make table cards, and finish all the last minute stuff all day - so I went to sleep early.</span></span></div>
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-4185386722114840642018-10-08T21:32:00.000-04:002018-10-08T21:33:31.110-04:00The Actual Bat Mitzvah!!!<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-size: 18.6667px; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">I am beyond proud of my daughter and thankful for this beautiful weekend. </span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Friday, October 5, 2018</span></span></div>
<b id="docs-internal-guid-bbfa7457-7fff-ba93-c327-bfad59a49250" style="font-weight: normal;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">The five of us (Sam came home from college on Thursday) gathered at the synagogue on Friday at 4pm to take photos. The Rabbi and the Cantor joined us for some pictures, and Sofia and I managed a couple of dress changes so we could get formals in our party dresses as well as our morning dresses (and my Friday night dress). Sofia looked so lovely with her hair curled and a little makeup to bring out her lovely features.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Between photos and services, David and Micah raced to the mall to get some watch batteries (for me and for Micah) while Sam and I set the tables for our dinner, which was after services.</span></span></div>
<b style="font-weight: normal;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">There were not too many people at services on Friday night. Many of our guest who were driving in were very late due to a big traffic jam on the Mass Pike. B, K, E & C flew up from Florida, and two other families had home hospitality nearby. A&J stayed with us. Two of my cousins flew in from California, and three pair of parental friends all joined us eventually for the evening. Plus of course our parents and Laura and her crew. My sister and her family got stuck in the traffic so did not make it to dinner.</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">For services, Sofia started out sitting on the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>bimah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, even though Cantor Ken was standing down on the floor. Eventually, Sam convinced Sofia to sit next to the Rabbi in the front row. She sat in the chair in front of me, tossing and twirling Woody. But she sat quietly.</span></span></div>
<b style="font-weight: normal;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Then it was finally time for </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Kiddush</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. Sofia and I went up to the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>bimah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> and set up her book. I stood to her side, and chanted softly so she had a guide, but she recited the words strongly (if not always clearly) into the microphone, only smiling triumphantly when she was done.</span></span></div>
<b style="font-weight: normal;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></b>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We had a lovely Shabbat dinner. Two of my friends acted as kitchen staff so I could enjoy visiting with our guests. It was lovely to see everyone. Micah and I joined the friend table for </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Birkat Hamazon</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (I spent most of the meal at that table) and I loved every minute. Sofia ate with Laura and Lilie, and eventually ended up back on the floor, tossing Woody. </span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">We had fun shmoozing, and finally left shul around 8:30. I was exhausted - Sam and I had been at shul all morning to set up, and I had to curl Sofia’s hair, make table cards, and finish all the last minute stuff all day - so I went to sleep early.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">The Big Day</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Sofia showered in the morning, and I put delicate little braids in her hair to pull it back from her face, with a sparkly bow in the back. She had a blue lace dress for services, plus of course her </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>tallit</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> that we had made last year in the Religious School class workshop. And her black shul shoes, which she mostly manages to keep on her feet.</span></span></div>
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<div dir="ltr" style="line-height: 1.38; margin-bottom: 0pt; margin-top: 0pt;">
<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We got to shul around 9am, and got settled. Sofia wanted to sit on the bimah the entire time, even during </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Shacharit</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> when the Rabbi and Cantor were still on the floor level. But she sat nicely, holding Woody and observing the crowd.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">There were tons and tons of people. Three extra rows of chairs, plus standing room. But empty seats up front (a problem with the layout of the room and people’s natural reluctance to sit up front). Sam, David, Micah and I kept a watchful eye on Sofia, occasionally instructing her to stand or sit or pay attention.</span></span></div>
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<span style="font-size: 18.6667px; white-space: pre-wrap;"><b><span style="font-family: "georgia" , "times new roman" , serif;">Program Book Text</span></b></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><i><b><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">It Takes a Village</span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To our family:</span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></b><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Thank you. They say you can’t choose your family, so we are very fortunate to get assigned to you. We treasure your love and support.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We are so grateful to have you in our lives.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><b><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To our friends:</span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></b><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We grew up with you, we went to school with you, we sent our children </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">to camp with you, we laugh, we joke, we have long conversations, </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">both in person and on the phone. Your love has been a constant. </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">You CAN choose your friend. </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We are so grateful you chose us. </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><b><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To our Temple Israel community:</span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></b><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Every week you accept Sofia as one of the kids in shul. You usually watch as she runs out door, but will happily help find her when we are searching. You cheerfully accept the candy that you just tossed, as our generous daughter forcefully shares her bounty. You don’t blink twice that Sofia is here. From the beautiful Baby Seder so many of you participated in until now, she has been a welcome part of this community. </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We are so thankful to belong here.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><b><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To our MetroWest Jewish Day School family:</span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></b><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">You raised us all. We are intricately bound up in the tapestry of MWJDS. We celebrated Sofia’s baby naming there. Sofia was a part-time student and is a permanent member of the MWJDS family. Our colleagues, our friends, students, staff and board members, thank you.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We are grateful for your support and inclusion.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><b><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To Sofia‘s teachers, therapist, counselors and coaches:</span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></b><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Since she was three weeks old, you have been part of the tapestry of our lives. How could Sofia possibly be this amazing without your support? Your patience, your knowledge and your care have been invaluable.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We are thankful for your guidance.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><b><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To Sofia’s friends:</span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></b><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">You have grown up accepting Sofia as one of you, recognizing that she is both unique and just like you. You welcome her for play, for hugs and for high-fives. You follow along with her funny dances and her big adventures. </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We are proud of you and the future you will shape.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><b><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To the Down syndrome community:</span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></b><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">None of us sought to be part of this community but we cannot imagine making this journey without you. Whether in person or on the Internet, with IRL (“in real life”) visits so infrequent but so special, you have been there to help us navigate the unusual journey it is to raise a chromosomally enhanced human being. We definitely could not have done it without you. </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We are so grateful for your friendship and support.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><b><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To the differently abled community:</span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></b><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Also a community no one seeks to be a part of but can’t survive without. We share the joys and the heart aches of having unique needs. Together we will change the world.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We thank you for your perseverance.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><b><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">To everyone who came from near and far to be with us today:</span><span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></b><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We thank you all for being here.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">We are thrilled to be able to share our joy with you.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br class="kix-line-break" /></span></i></span></div>
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<span style="background-color: transparent; color: black; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><i><b>About Down Syndrome</b></i></span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><i><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">For centuries, people with Down syndrome have been alluded to in art, literature and science. In 1866, Dr. John Langdon Down first published an accurate description of the condition as a distinct and separate entity. In 1959, Dr. Jérôme Lejeune identified Down syndrome as a chromosomal condition. Instead of the usual 46 chromosomes present in each cell, Lejeune observed 47 in the cells of individuals with Down syndrome; because of an extra piece on the 21</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: super; white-space: pre-wrap;">st</span><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"> chromosomal pair, it is also called Trisomy 21. It is the most common chromosomal condition; about 6,000 babies with Down syndrome are born in the United States each year. October is Down Syndrome Awareness Month!</span></i></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><i><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><br /></span></i></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><b><span style="font-family: "georgia" , "times new roman" , serif;">Torah Service</span></b></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">And then it was time for the Torah service. We had decided at the last rehearsal that Sam would hold the Torah while Sofia stayed at the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>amud</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (the readers table) to use the microphone and prop her book on the podium.</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Sofia showed no signs of nervousness as she carefully said the words </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Shema Yisrael Adonai Eloheinu Adonai Echad.</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> And when the congregation responded with the repetition of that phrase, a huge smile spread over her face as she realized the power she held!</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Sam and the Rabbi transferred the Torah into her arms, and she proudly carried it through the congregation. Quickly. But she didn’t drop it, so quick was fine. </span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">When the Torah readings begin, Sofia tossed Woody to me, and never wanted him back (I asked!). She also never left the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>bimah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, although usually Torah reading is her prime bathroom break (I asked about that, too!).</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">The Torah readings were great. For the first </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>aliyah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, we had three readers. Back when I had been teaching Torah reading at MWJDS, and it was the Se’orah class’ turn to learn, one of the girls had protested that she was too shy to have her own bat mitzvah in front of so many people, and wanted hers on a quieter day. I explained that I wanted Sofia’s to be on Shabbat because the congregation has watched her (and this other child) every week, and everyone wanted to be able to celebrate with them, so she sighed and said, “I guess I’ll read Torah for Sofia’s bat mitzvah.” Of course, the other girls wanted in on that, so two of her former classmates plus another MWJDS friend split the first </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>aliyah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. My dear friend Brenda read second, and another of Sofia's friends was another reader. Three more of our adult friends rounded out the readers, and I did the last </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>aliyah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> and the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Maftir</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">.</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Sofia stood proudly at the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>amud</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. I had to coach her to take the corner of her </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>tallis</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> and kiss the Torah first, but she recited the blessing before the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>aliyah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, and waited patiently while I read, then (with more prompting about kissing the Torah first) recited the second blessing.</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Rabbi and Cantor recited the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Misheberach</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> blessing in English and Hebrew, and then I said a few words to Sofia and to everyone, and then David and I read a blessing. And then they threw candy!</span></span></div>
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<span style="background-color: transparent; color: black; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;">My Remarks & Our Blessing</span></span></div>
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<span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;">The evening we got our amnio results back, I wrote a letter to my not-yet-born daughter. In the letter I wrote “I worry about your Jewish education. How do I make sure that you feel the joy that the rest of us do about Judaism?”</span></i></span></div>
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<span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;">Well, Sofia, everyone here can see that you most certainly feel as much joy as any of us. You have practiced so hard for this day, and we are all so very proud of you.</span></i></span></div>
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<i><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">In your baby book, along with the letter, I found my remarks for your </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Simchat Bat</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, the baby naming we celebrated here at Temple Israel. These words all still hold true today, so it made writing remarks for today much easier. It starts with a poem:</span></span></i></div>
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<i><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;">Everything in God’s creation has its distinctive melody, </span></span></i></div>
<i><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"></span></i><br />
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<i><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><i><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">A rhythm and life-beat that it alone plays.</span></i></span></i></div>
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<i><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">This is especially true of humanity.</span></i></div>
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<i><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">Each of us has the song we sing in this world,</span></i></div>
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<i><span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline;">An evolving ballad that is uniquely his or her own.</span></i></div>
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<span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;">Moshe Mykoff</span></i></span></div>
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<i><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Just as we celebrated your </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Simchat Bat</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> here, we are so glad to be celebrating your </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Bat Mitzvah</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> at Temple Israel, which really is our second home. We hope you are always surrounded by the warmth and love that fills this room today, with so many family and friends watching you grow. We thank everyone for all the caring and support you have always given us, and we are so glad you could all join us for Sofia’s </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">second</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> major lifecycle event. We look forward to celebrating many more </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">simchas</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> with each of you.</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span class="Apple-tab-span" style="white-space: pre;"> </span></span></span></i></div>
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<span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;">We are grateful, O God, for the privilege of passing along the gift of life which You gave us, thus sharing with You in the miracle of creation. We are grateful for the thirteen years of nurturing this life, for the unnumbered joys and challenges which these years have brought us. Praise to You, O Lord, for keeping us alive, for sustaining us, and for enabling us to reach this day.</span></i></span></div>
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<i><span style="font-family: "georgia" , "times new roman" , serif; font-size: x-small;"><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Bless our daughter, O God; watch over her, protect her, guide her. Help her to continue to grow in body and mind, in soul and character. Keep her loyal to our people and to the teachings of our </span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Torah</span><span style="background-color: transparent; color: black; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. May her life be rich and rewarding. May all her deeds bring pride to us, honor to the house of Israel, and glory to Your name. Amen. </span></span></i></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">The Service Continues</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Sofia's </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>d'var </i>was actually an adaptation of the text: </span></span></div>
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<span id="docs-internal-guid-2d58d758-7fff-5f1b-354f-4e63259cb40b"><span style="font-family: "georgia" , "times new roman" , serif;"><span style="font-size: 14pt; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">בְּרֵאשִׁית In The Beginning</span></span></span></div>
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<span style="font-size: 14pt; font-style: italic; font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;">Adapted by Alison Greengard, Illustrated by Carol Racklin-Siegel</span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-size: x-small;">In the beginning, when God was making heaven and earth, God said, “Let there be light!” And there was light. God called light Day. God called the darkness Night. It was evening and it was morning, the first day.</span></i></span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-size: x-small;">God said, “Let there be space in the water.” God called the space Sky. God said, “Let the waters gather in one place, and let dry land appear.” It was so. God called the dry land Earth, and God called the water Seas. God saw it was good. It was evening and it was morning, the second day.</span></i></span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-size: x-small;">God said, “Let the earth grow plants.” It was so, and God saw it was good.</span></i></span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-size: x-small;">It was evening and it was morning, the third day.</span></i></span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-size: x-small;">God said, “Let there be lights in the sky!” It was so. God made the big light to rule the day, and the smaller light to rule the night, and the stars. God saw it was good. It was evening and it was morning, the fourth day.</span></i></span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-size: x-small;">God said, “Let the waters be filled with fish, and let birds fly above the earth.” God saw it was good. God blessed them. It was evening and it was morning, the fifth day.</span></i></span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-size: x-small;">God said, “Make animals on the earth.” It was so, and God saw it was good. God created people in God’s image. Male and female, God created them. God blessed them. God saw all that had been made, it was Very good.</span></i></span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-size: x-small;">It was evening and it was morning, the sixth day.</span></i></span></div>
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<span style="font-variant-east-asian: normal; font-variant-numeric: normal; vertical-align: baseline; white-space: pre-wrap;"><i><span style="font-size: x-small;">The sky and the earth and everything were completed. On the seventh day, God finished all the work of creation and rested. God blessed the seventh day and made it holy. It was Shabbat! </span></i></span><br />
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="font-size: 18.6667px; white-space: pre-wrap;">We had her murals, created with her religious school teacher last spring, displayed in front of her while she read.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Micah chanted the Haftarah.</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Sofia’s MWJDS classmates plus one other friend all joined her for </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Ashrei</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. She stood at the microphone and tried to say the words along with them (that will be what I teach her next). It was one of the few times I got teary-eyed, seeing all of them together. After a speedy Musaf service came the speeches. “Hamorah Margalit” Gretchen made the presentation on behalf of the synagogue, and that brought me to tears. She and Sofia have a special rapport from their year working together. And it was very sweet: Gretchen pointed to the large gift (the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>chanukiya</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> from the Gesher class) on the amud and asked Sofia if she knew who it was from, and Sofia promptly replied “Sophia P!”</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Kendra made the presentation from USY, and she was so sweet and poised and adorable with Sofia. It was very touching to see them together, too, because they really have a special friendship.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">The rabbi’s brief remarks to Sofia were equally special, as was his own d’var at the end of the Torah service.</span></span></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Sofia loved standing for </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Adon Olam,</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> and then Lilie joined her for </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>kiddush</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> (because of the time, Cantor actually skipped </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>V’shamru</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">!). Lilie reached for the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>kiddush</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> cup, and Sofia smoothly grabbed it out of her hands! They recited kiddush together, and Sofia loudly recited </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>al netilat yadaim</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> and </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>hamotzi</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Lunch</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">As usual, we rented long tables and turned the Social Hall into some sort of fancy beer hall (minus the beer) as we tried to seat more than 300 people. We were very fortunate that the weather was lovely, so we also had round tables set up in the courtyard for overflow. It took people a long time to get through the buffet, even with 8 lines. The food was delicious. Phyllis (the caterer) really outdid herself. Amazing brisket, hot turkey breast, tzimmes, chicken tenders, meatballs, hot dogs in sauce, wild rice, and antipasto salad with lots of veggies. There were also egg rolls, meat knishes and potato pancakes in the hallway. Yum.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">We didn’t leave until about 2:30, happy, full and exhausted. Back at home, I did a couple of last minute preparations, curled Sofia’s hair again, and took a short nap. Then it was time to dress and head back for the party.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Party Time</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Sofia and I got to shul around 6:30, with the rest of our household arriving shortly after. The DJ was did a sound test, the catering staff was still setting up, and it was a bustle. But by 7pm we were ready and people started arriving.</span></span></div>
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<a href="https://3.bp.blogspot.com/-cAZoxAgZlzc/W7wAPq7CLsI/AAAAAAACvDc/KWgXJIaWKtceqkxhIDHUszQk_1wYwe7QgCLcBGAs/s1600/IMG_4705.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://3.bp.blogspot.com/-cAZoxAgZlzc/W7wAPq7CLsI/AAAAAAACvDc/KWgXJIaWKtceqkxhIDHUszQk_1wYwe7QgCLcBGAs/s320/IMG_4705.jpg" width="320" /></span></a><span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><br />We had adults out in the hallway for </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>hor d’ourves</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, kids inside with the DJ for quiet games (and nachos). Around 7:30, we all gathered in the Social Hall, and eventually we got everyone to quiet down for </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Havdalah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. The five of us all held candles, I held the microphone (and a spice bag - left over from Micah’s </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>bar mitzvah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">!), while David held his candle and the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>kiddush</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"> cup. </span></span></div>
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<a href="https://2.bp.blogspot.com/-GXiy_Zhh3FU/W7v_kd6FkjI/AAAAAAACvDQ/qEFEhNuN0LQ5fF-KsWnOOnaTxkhs6B_3QCLcBGAs/s1600/Version%2B2%2B%25284%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="869" data-original-width="1600" height="173" src="https://2.bp.blogspot.com/-GXiy_Zhh3FU/W7v_kd6FkjI/AAAAAAACvDQ/qEFEhNuN0LQ5fF-KsWnOOnaTxkhs6B_3QCLcBGAs/s320/Version%2B2%2B%25284%2529.jpg" width="320" /></span></a></div>
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<span style="font-family: "georgia" , "times new roman" , serif;"><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">Right after </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Havdalah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">, we went into the </span><span style="background-color: transparent; color: black; font-size: 14pt; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><i>Horah</i></span><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;">. Sofia was SO excited to be the center - literally. She would not let any of us dance with her. Instead, she just stood in the center of the many circles, enjoying the feel over everyone dancing around her. And when it was time for the chair lifting, she was overjoyed. We had both boys and then David up on chairs. When it was mom’s turn, I said “nope” and hopped up to stand on the chair while it stayed safely on the ground.</span></span></div>
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<a href="https://2.bp.blogspot.com/-SpzchtkRSJk/W7v_DblZcYI/AAAAAAACvCg/AHsYNQHCngkZITCFB-ZjRH-BAr9UMVqHACLcBGAs/s1600/Version%2B2%2B%25281%2529.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1600" data-original-width="1291" height="320" src="https://2.bp.blogspot.com/-SpzchtkRSJk/W7v_DblZcYI/AAAAAAACvCg/AHsYNQHCngkZITCFB-ZjRH-BAr9UMVqHACLcBGAs/s320/Version%2B2%2B%25281%2529.jpg" width="258" /></span></a></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">I had told the DJ company “no light show” so they did not bring any colored or flashing lights. It was a good decision. The natural lighting of the room - either dimmed for quieter times or full strength for wild dancing - was much more sensory friendly. We had a whole table of parents sitting near the kids, and I was overjoyed to have my DS mom friends with me. The kids were all amazing. The various groups (school, shul, MWJDS, specials) overlapped and got along so well. Everyone was super sweet. Sofia’s school friends were very attentive to her, and everyone danced.</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">I mean EVERYONE danced. The DJ did a great job of getting everyone up (at one point we had a giant conga line snaking through the room), and so many of us are dancing machines anyway. I loved having all my wonderful girlfriends with me (MWJDS gang, DS moms, Brandeis crowd, and so many others). Sofia loved loved loved being the center of attention. </span></span></div>
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<a href="https://3.bp.blogspot.com/-ViW9hTgVpww/W7v-3vFzAGI/AAAAAAACvBo/LaKhWRuzM8s6DSBRhHqkXvhGCYXfPHbzQCLcBGAs/s1600/348B67A3-0D6C-4205-A4E8-788C50080966.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://3.bp.blogspot.com/-ViW9hTgVpww/W7v-3vFzAGI/AAAAAAACvBo/LaKhWRuzM8s6DSBRhHqkXvhGCYXfPHbzQCLcBGAs/s320/348B67A3-0D6C-4205-A4E8-788C50080966.jpg" width="240" /></span></a><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">And she looked gorgeous. Sweet and lovely, with the fancy dress we’d gotten nearly a year ago, and the fun blinged-out sneakers. The only grumpy moment was when she got hungry, but I got her some chips and she was fine.</span></span></div>
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<a href="https://3.bp.blogspot.com/-4brA2zbpWyM/W7v-9Li3sLI/AAAAAAACvCM/RS7ok4YdUc4CRL14LMV2C9o2wXjX4wKBACLcBGAs/s1600/IMG_3599.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://3.bp.blogspot.com/-4brA2zbpWyM/W7v-9Li3sLI/AAAAAAACvCM/RS7ok4YdUc4CRL14LMV2C9o2wXjX4wKBACLcBGAs/s320/IMG_3599.jpg" width="240" /></span></a><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">The DJ mistakenly sent 187 people to the dinner buffet at the same time (I spoke to him about it afterwards), but otherwise he did a good job of getting people moving. I did bring a box of ear plugs, which turned out to be a very good idea. The kids loved all the prizes the DJ handed out. </span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">It was just simply perfect. Sweet and fun and amazing.</span></span></div>
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<a href="https://2.bp.blogspot.com/-IqpjBNQ5iNU/W7v_E_XKGFI/AAAAAAACvCo/o0_tjHUPal0i2QkwBdBBXLX_aLHpKt1RgCLcBGAs/s1600/Version%2B2%2B%25282%2529.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1600" data-original-width="1518" height="320" src="https://2.bp.blogspot.com/-IqpjBNQ5iNU/W7v_E_XKGFI/AAAAAAACvCo/o0_tjHUPal0i2QkwBdBBXLX_aLHpKt1RgCLcBGAs/s320/Version%2B2%2B%25282%2529.jpg" width="303" /></span></a><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">At 10pm, the ice cream buffet was out and we played the slide show. Sofia sat front and center (and told me to go away). With each song in the montage, she sat (cake plate in hand) singing and doing the arm motions. She was enchanted. I loved watching her friends recognize themselves in the photos.</span></span></div>
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<a href="https://3.bp.blogspot.com/-skfGrl9E-Rw/W7v_EkJpVBI/AAAAAAACvCk/Zd-zEm9GRk84iYw4If0BiJxkef_l_MQxQCLcBGAs/s1600/Version%2B2%2B%25283%2529.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1234" data-original-width="1600" height="246" src="https://3.bp.blogspot.com/-skfGrl9E-Rw/W7v_EkJpVBI/AAAAAAACvCk/Zd-zEm9GRk84iYw4If0BiJxkef_l_MQxQCLcBGAs/s320/Version%2B2%2B%25283%2529.jpg" width="320" /></span></a></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">After the Party</span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">The party officially ended at 11pm, but it took us an hour to get the cars loaded (mine, David’s and A’s) and get out of there. Sofia was so tired, and wanted to “go home, put on pajamas, and in five minutes, sleep.” We made it home a little after midnight, and I sent her off to bed. The rest of us sat (on the kitchen floor, for some reason), talking while I opened her cards. (I promised she could open the physical gifts on Sunday). </span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Sunday, October 7: Buddy Walk</span></span></div>
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<a href="https://4.bp.blogspot.com/-xVB4c0gu6oE/W7v-3jDdjLI/AAAAAAACvBs/FPteqYqrmY0Y5lViWukejeDpe4UdZHLygCLcBGAs/s1600/IMG_1556.jpg" imageanchor="1" style="clear: right; float: right; margin-bottom: 1em; margin-left: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://4.bp.blogspot.com/-xVB4c0gu6oE/W7v-3jDdjLI/AAAAAAACvBs/FPteqYqrmY0Y5lViWukejeDpe4UdZHLygCLcBGAs/s320/IMG_1556.jpg" width="320" /></span></a><a href="https://3.bp.blogspot.com/-1oHcTsL3V_M/W7v-_Wk2l8I/AAAAAAACvCQ/6HWR9ZM1BtMDVCdPkhn-uxYZN8_H4v8XwCLcBGAs/s1600/IMG_3619.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1200" data-original-width="1600" height="240" src="https://3.bp.blogspot.com/-1oHcTsL3V_M/W7v-_Wk2l8I/AAAAAAACvCQ/6HWR9ZM1BtMDVCdPkhn-uxYZN8_H4v8XwCLcBGAs/s320/IMG_3619.jpg" width="320" /></span></a><span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">We weren’t done yet! David went back to shul for minyan Sunday morning, while I got us ready for the Buddy Walk. I packed up a variety of leftovers, plus the 55 t-shirts I had prepared. Sofia, Micah and I left the house at 10, and got to Wakefield right at 11. We managed to get a terrific parking space right near the corner where I wanted to set up, and got everything loaded onto the green. Then we had about 35 minutes to relax; I read my book while Sofia watched a movie on her tablet and Micah did some homework. People finally started joining us. Occasionally I would take a walk over to the festivities, but really, we were just all so tired!</span></span></div>
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<a href="https://3.bp.blogspot.com/-j6OoFrM9Prc/W7v_Fvx39ZI/AAAAAAACvCw/4XVOiiArZU0iAVffitp0LgP7tRA99cAmACLcBGAs/s1600/Version%2B2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="720" data-original-width="1600" height="143" src="https://3.bp.blogspot.com/-j6OoFrM9Prc/W7v_Fvx39ZI/AAAAAAACvCw/4XVOiiArZU0iAVffitp0LgP7tRA99cAmACLcBGAs/s320/Version%2B2.jpg" width="320" /></span></a></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Around 1:00, I took Sofia over to see the princesses: Elsa and Anna, Evie and Mal. She enjoyed that a lot, and it took some time to get her back to our picnic area.</span></span></div>
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<a href="https://1.bp.blogspot.com/-8fBdt0wrE9M/W7v_Bjqxv3I/AAAAAAACvCY/8-E-agvoWSE74BHT-dFQS8FA6LsOkMk_wCLcBGAs/s1600/IMG_3667.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1600" data-original-width="1200" height="320" src="https://1.bp.blogspot.com/-8fBdt0wrE9M/W7v_Bjqxv3I/AAAAAAACvCY/8-E-agvoWSE74BHT-dFQS8FA6LsOkMk_wCLcBGAs/s320/IMG_3667.jpg" width="240" /></span></a></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">The walk started at 1:30, and as usual, it took a while to get moving. My feet were killing me. While I had a nice time talking to my friends, by the time we hit the bus stop, I couldn’t go any further. I took the shuttle back to the Common, and relaxed with C. (who had stayed behind to guard the stuff). We had a nice conversation.</span></span></div>
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<a href="https://3.bp.blogspot.com/-NY7uaRAgYBc/W7v-62qvoYI/AAAAAAACvB4/wwPdBdUQX7sDcPTncpj1ubl3bbVxr44JwCLcBGAs/s1600/IMG_1889.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1280" data-original-width="720" height="320" src="https://3.bp.blogspot.com/-NY7uaRAgYBc/W7v-62qvoYI/AAAAAAACvB4/wwPdBdUQX7sDcPTncpj1ubl3bbVxr44JwCLcBGAs/s320/IMG_1889.jpg" width="180" /></span></a><a href="https://3.bp.blogspot.com/-aLGA0ck7g5s/W7v-7D9JQOI/AAAAAAACvCE/lS1ylfmscJ85Pi5lID58Omm5h7uMbUudwCLcBGAs/s1600/IMG_1891.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><span style="font-family: "georgia" , "times new roman" , serif;"><img border="0" data-original-height="1280" data-original-width="720" height="320" src="https://3.bp.blogspot.com/-aLGA0ck7g5s/W7v-7D9JQOI/AAAAAAACvCE/lS1ylfmscJ85Pi5lID58Omm5h7uMbUudwCLcBGAs/s320/IMG_1891.jpg" width="180" /></span></a></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;"><br /></span></span></div>
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<span style="background-color: transparent; color: black; font-size: 14pt; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline; white-space: pre-wrap;"><span style="font-family: "georgia" , "times new roman" , serif;">Everyone finally came back, we snacked and shmoozed, and then said goodbye. We had to stop and get my eyeglasses fixed; somehow I lost one of the nose pieces! Back home to eat, clean up and get to sleep… after watching Doctor Who, of course!</span></span></div>
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com1tag:blogger.com,1999:blog-7926293667751454256.post-4949768432910190052018-08-15T14:52:00.002-04:002018-08-16T14:00:55.389-04:00Sofia's Bat Mitzvah!It seems crazy that I have not blogged since 2015, but Facebook has indeed taken over. It is, however, a special occasion, one that I have been waiting for since I got the amnio results in 2004.<br />
<br />
Sofia's <i>Bat Mitzvah</i>!!!<br />
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<span style="font-family: "times" , "times new roman" , serif;">Yes, my girl is 13, and has been working for a long time to prepare for her <i>Bat Mitzvah</i>.</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><br /></span>
<span style="font-family: "times" , "times new roman" , serif;">Here are the details you need:</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><b><br /></b></span>
<span style="font-family: "times" , "times new roman" , serif;"><b>Friday, October 5, 2018: </b>Shabbat services at Temple Israel are at 5:15. If you are traveling from out-of-town and will be up here in time, please join us for <i>Shabbat</i> dinner immediately following services. Please email us at <span style="color: magenta;"><b><a href="mailto:spdrothkopf@gmail.com">spdrothkopf@gmail.com</a> </b></span>to RSVP for dinner.</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><b><br /></b></span>
<span style="font-family: "times" , "times new roman" , serif;"><b>Saturday, October 6, 2018:</b> Service begins at 9:15 am at Temple Israel. The Torah service begins approximately 10:00 am. There will be a congregational luncheon immediately after services (around noon) to which all are invited.</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><b><br /></b></span>
<span style="font-family: "times" , "times new roman" , serif;"><b>Saturday, October 6, 2018:</b> The Party! 7:00 pm, <i>Havdalah</i> by 7:30 and then dinner and dancing!</span><br />
<span style="font-family: "times" , "times new roman" , serif;"><b><br /></b></span>
<span style="font-family: "times" , "times new roman" , serif;"><b>Sunday, October 7, 2018:</b> The MDSC Buddy Walk. Please join us as part of <b>Sofia's <i>Bat Mitzvah</i> Team</b> at the 22nd annual Mass Down Syndrome Congress Buddy Walk, around Lake <span style="text-align: center;">Quannapowitt in Wakefield, MA. We will have a brunch spread on the green before the walk begins, too.</span></span><br />
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<h3>
<span style="font-family: "times" , "times new roman" , serif; font-size: 18px; text-align: center;">Hotel Information</span></h3>
We have reserved rooms at several hotels in the area (more links coming soon):<br />
<br />
<a href="https://www.marriott.com/meeting-event-hotels/group-corporate-travel/groupCorp.mi?resLinkData=ROTHKOPF%20BAT%20MITZVAH%5EBOSNF%60ROTROTA%7CROTROTB%60139%60USD%60false%604%6010/5/18%6010/7/18%609/6/18&app=resvlink&stop_mobi=yes" target="_blank"><span style="color: magenta;"><b>Courtyard by Marriott,<span id="goog_2086542158"></span><span id="goog_2086542159"></span></b> </span></a>342 Speen St, Natick, MA: Rate for either 1 King or 2 Doubles should be $139 per night (plus tax).<br />
<b><br /></b><span style="color: magenta;"><b>Hampton Inn,</b> </span>319 Speen St, Natick, MA . Rate for either 1 King or 2 Doubles should be $141 per night (plus tax); includes breakfast.<br />
<b><br /></b><b><span style="color: magenta;"><a href="https://www.crowneplaza.com/redirect?path=hd&brandCode=CP&localeCode=en&regionCode=1&hotelCode=BOSNK&_PMID=99801505&GPC=SOF&viewfullsite=true" target="_blank">Crown Plaza Natick</a>,</span></b> 1360 Worcester St, Natick, MA 01760, <span style="caret-color: rgb(0, 0, 0); text-size-adjust: auto;"><span style="font-family: Times, Times New Roman, serif;">800-265-0339</span></span>: They only have King bed rooms available; rate should be $159 per night (plus tax).<br />
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<br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-25823190736852771852015-04-13T17:16:00.002-04:002015-04-15T08:38:10.505-04:00Pay It ForwardDear friends, <br />
<br />
When my daughter Sofia was born with Down syndrome, our family became part of a very special community. Our connections may be in person, or just over the Internet. We may live near each other and get to see each other regularly, or we may live so far apart that our “In Real Life” connections are few and far between. But our ties are strong. We are there to support each other, through good times and bad.<br />
<br />
This past winter, Sofia was entered in a contest, to try to win a <a href="http://www.buddybike.com/" target="_blank">special adaptive bicycle</a>. She didn’t win. But one of my Down syndrome friends, a local mom who had tragically lost her own daughter as an infant, surprised me. At her suggestion, the <a href="http://www.hollistonucc.org/" target="_blank">First Congregational Church of Holliston</a> (MA) raised the money, and are buying Sofia an adaptive bike! The members of the church have never met Sofia. We are not part of their direct community. But because of our connection to the amazing Down syndrome community, they raised nearly $2000 to purchase this special bicycle for Sofia.<br />
<br />
Now it’s our turn. My friend Rebecca lives in Iowa. We met via an online support group for parents of children with Down syndrome, and we managed to meet in real life several years ago. Rebecca is a single mom. She has a Masters Degree, and works as a researcher. She is also a talented designer; she designed this Blog layout for me years ago. She has two children at home. The glorious Elainah has Down syndrome, as well as Epilepsy. She is a year older than my Sofia. Her big brother, Chandler, has Aspergers, and has been bullied so much in school that he now has PTSD. Both of these children have frequent medical appointments, and the occasional emergency trip to the ER.<br />
<br />
On April 1, Rebecca’s car was hit. She was actually sitting at a light when another car slammed into her. The insurance company declared it totaled, but did not actually give her enough money to purchase a replacement. There is no public transportation available where she lives.<br />
<br />
She needs another $3000 to purchase a vehicle. In her own words, she needs, "something small, that isn’t too old, gets good mileage, and doesn’t require much financing. I won’t have money for ongoing repairs, so I need something that won’t likely have many. A car like this would certainly reduce the odds of extra expenses right away."<br />
<br />
<a href="http://www.youcaring.com/emergency-fundraiser/help-rebecca-replace-her-vehicle/335462" target="_blank">I would like very much to “pay it forward” and encourage my friends and family to help raise that money for her.</a><br />
<br />
In Cantor Ken Richmond’s very moving speech before <a href="http://www.myjewishlearning.com/life/Life_Events/Death_and_Mourning/Burial_and_Mourning/Yizkor.shtml" target="_blank"><i>Yizkor</i></a>, the Memorial Service on the last day of Passover, he spoke about the custom of giving <a href="http://www.myjewishlearning.com/practices/Ethics/Tzedakah_Charity/Tzedakah_101.shtml" target="_blank"><i>tzedakah</i></a> in memory of a loved one. Here is your opportunity. <br />
<br />
Please consider helping Rebecca, a complete stranger to you, just as Sofia is a complete stranger to the First Congregational Church of Holliston community. Every little bit will help. Thank you for considering being a part of this special <a href="http://www.myjewishlearning.com/practices/Ritual/Jewish_Practices/Mitzvot.shtml" target="_blank"><i>mitzvah</i></a>.<br />
<br />
UPDATE: I guess it would help if I posted the link! <a href="http://www.youcaring.com/emergency-fundraiser/help-rebecca-replace-her-vehicle/335462" target="_blank">Here is the fundraising site</a> and <a href="https://youtu.be/sgD8xK5H-oI" target="_blank">here is the video</a>. <br />
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<iframe allowfullscreen="" frameborder="0" height="315" src="https://www.youtube.com/embed/sgD8xK5H-oI" width="560"></iframe><br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com1tag:blogger.com,1999:blog-7926293667751454256.post-22699936499350033722014-12-18T09:38:00.001-05:002014-12-18T09:38:43.740-05:00Been kinda busy!<span style="font-family: inherit;"><span style="font-size: small;">Well, November was a whirlwind, prepping for (and then recovering from) Micah's Bar Mitzvah on November 15. He totally rocked it. My cheeks hurt from smiling so much. It was a really lovely wonderful weekend.</span></span><br />
<span style="font-family: inherit;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: inherit;"><span style="font-size: small;">We started with Friday night services, and then a Community Shabbat Dinner - we had 4 tables reserved for our guests. What's really nice is that Micah is very "into" doing Birkat Hamazon, the grace after meals, and so am I. So we had a group for that. For me, one of the special parts of the weekend was having Brenda and her son Eitan up from Florida. Brenda and I met at our first Kadima (junior USY) event in 7th grade, and have been friends ever since. And now our sons are best buds. It was also lovely to have my parents' dear friends, the Skopovs, who are like family to me. And relatives and friends from all over.</span></span><br />
<span style="font-family: inherit;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: inherit;"><span style="font-size: small;">Adam and Jenny slept over our house, so after we all went home, it was nice to visit a bit with them.</span></span><br />
<span style="font-family: inherit;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: inherit;"><span style="font-size: small;">Saturday morning service was packed and perfect. Micah did great, Sam read Torah well, I did fine on my reading, everyone behaved... it was just lovely. And lunch for 325+ was awesome.</span></span><br />
<span style="font-family: inherit;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: inherit;"><span style="font-size: small;">We rested a little bit in the afternoon, but I had to be back at shul to set up for the evening party. The night was fabulous. The social hall looked lovely with the decorations and the lighting from the DJ. The kids had a blast. The grownups had fun.</span></span><br />
<span style="font-family: inherit;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: inherit;"><span style="font-size: small;">Then Sunday morning we hosted brunch - our friends Hope and Clay kindly offered their house (since they had just done the same for their daughter's bat mitzvah a few weeks earlier). It was great to be able to talk to people in a quieter setting.</span></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Formal portrait on Thursday evening</td></tr>
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<span style="font-family: inherit;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: inherit;"><span style="font-size: small;">Exhaustion after that, and clean-up. Now Micah is still working on Thank You notes - it'll take a while...</span></span><br />
<span style="font-family: inherit;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: inherit;"><span style="font-size: small;">Thanksgiving was good. My sister's house on Thursday, out to a restaurant with my inlaws and Laura on Friday, and then we came home for a nice weekend here - shul, friends, relaxing.</span></span><br />
<span style="font-family: inherit;"><span style="font-size: small;"><br /></span></span>
<span style="font-family: inherit;"><span style="font-size: small;">Then gear up because this past weekend was the MWJDS Winter Lights Gala, and I was one of the Honorees! I worked triple my usual hours last week prepping things (ha - they thought they wouldn't let me work on it! Can't keep a control-freak away...). The event was Lovely. Really the best Gala we've ever had, and not just because I was an Honoree ;) There was dancing and a fabulous community-wide Horah. Really fun. And we raised over $40k just that night in the Silent and Live Auctions! Still doing the tallying (it takes a while, because people send in money after the event, too), but definitely a successful event.</span></span><br />
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<tr><td class="tr-caption" style="text-align: center;">Gala photo with David's family (taken by my dad)</td></tr>
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<span style="font-family: inherit;"><span style="font-size: small;">Here is the text of my speech:</span></span><br />
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<b style="mso-bidi-font-weight: normal;"><span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;">Francine’s Remarks for 2014 Gala</span></b></h3>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;">Thank you, my
friend, my mentor. </span><span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">The very beginning of Pirke Avot begins with teachers and
Mentors:</span><span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;"></span></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Moses received the Torah from Sinai and transmitted it to
Joshua; Joshua to the elders; the elders to the prophets; and the prophets
handed it down to the men of the Great Assembly.</span></i></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">Beginning with Moses,
who learned directly from God, each of these great leaders was first a student,
and then a teacher. We are all both: student and teacher.</span></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%; mso-bidi-font-family: "Times New Roman"; mso-fareast-font-family: "Times New Roman";">When our first child was
born, David and I read a story about a renowned Rabbi in Russia. For a long
time, when he prayed, he did so in a whisper. But once his own child was born,
his voice resounded through the house as he proclaimed his prayers. When his
wife asked him why the change, he replied, “Today, things are different. Before
I became a father, the blessings I pronounced were a matter between myself and
God, but today, there are little eyes watching, little ears listening. Today, I
am transmitting something to the future.”</span></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;">I think that Rabbi
was only partially correct. Once his own child arrived, he understood that what
he did, what he said, might actually be important to someone other than
himself. His actions, his words, might serve as a lesson for his child.</span></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;">I think that we
all have this responsibility, all the time. It is not just our own children who
are guided by our actions. It is not only other children. It is everyone. It is
our friends, our neighbors, our coworkers.</span></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;">Every one of us
has been a student, at least at some point in our lives. If we are lucky, we
are always a student, always learning, always growing. </span></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;">But we all should
also remember that we are mentors and we are teachers. We can help someone else
grow and learn. We have something valuable to share, to contribute to the
community.</span></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;">I am so grateful
for all my mentors and teachers, especially Carolyn Keller and Renée Finn, who
showed me how important it was to build a school dedicated to excellence and
Jewish leadership. I am grateful to my co-workers – I am so grateful to be able
to <b style="mso-bidi-font-weight: normal;">call</b> them my co-workers! – for
teaching me how to work with all the amazing young beings entrusted to our
care. I am so grateful for our students, who really do seem like sponges
sometimes, soaking up what they are learning, but who also teach me so much
each day.</span></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;">I am so grateful
for MetroWest Jewish Day School’s existence, so David and I could provide our
own sons with the nurturing, thoughtful, guidance they needed to grow into the <i style="mso-bidi-font-style: normal;">menches</i> they have become. I am grateful
for the flexibility which let our daughter Sofia attend MWJDS as a part-time
student, so that she could get exactly what she needed from our community – a
love of Judaism, a social community, and a sense of belonging. </span></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;">I am grateful to
all of you for supporting MJWDS. I am so proud of our accomplishments over
these past 13 years, and I can’t wait to see what the future will bring for us!
</span></div>
<div class="MsoNormal" style="line-height: 200%; margin-bottom: .25in;">
<i style="mso-bidi-font-style: normal;"><span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;">Hazak Hazak v’Nit’hazek</span></i><span style="font-family: Cochin; font-size: 16.0pt; line-height: 200%;"> – Be strong and
let us strengthen one another. <i style="mso-bidi-font-style: normal;">Chazak
u’va’ruch</i> – Be strong and blessed.</span></div>
FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-18543615750568307272014-10-31T23:14:00.001-04:002014-10-31T23:14:05.882-04:00Ending a month of Down Syndrome Awareness posts<h3>
October 28 - 31 for 21: That Gap next to the big toe</h3>
There are a bunch of common physical characteristics in people with Down syndrome. Some of the most common are:<br />
<br />
- those beautiful slanted eyes<span class="text_exposed_show"><br /> - a flat nasal bridge<br /> - a single crease across the palm of the hand (transverse palmar crease)<br /> - excessive space between big toe and second toe<br /> - short stature<br /> - low muscle tone<br /> - excessive flexibility<br /> - lower set ears<br /> - Brushfield spots in the iris of the eye<br /> - stabismus (crossed eyes)</span><br />
<div class="text_exposed_show">
<br />
I love looking at Sofia's feet. That large gap seems to awesome to me.
It looks as if her feet are trying to spread out and grab more of the
world.<br />
<br />
In her eyes, the beautiful Brushfield spots look like stars in the sky.<br />
<br />
Sofia's nasal bridge is not very flat - she is able to wear regular
eyeglasses. But many of our DS friends get their eyeglasses from
Specs4Us, specially designed for both the flatter nose and lower ears.<br />
<br />
Often a maternity ward nurse will look at the single crease across the
palm of a newborn's hand and know for sure, before the genetic tests
come back, that this baby has the extra special chromosome of Down
syndrome.<br />
<br />
I look at Sofia, and at others with Down syndrome, and sometimes their beauty just takes my breath away.<br />
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<h3>
October 29 - 31 for 21: Processing</h3>
I'm always fascinated with what Sofia notices and how she processes things.<br />
<br />
First, there is her skill at naming things. She's very creative with
words. She likes to walk "footprints" (rather than barefoot). My
favorite Sofia word is "Snowmatoes" - you know, mini-marshmallows!<br />
<div class="text_exposed_show">
When a movie or TV show might be a little scary but she still wants to
watch it, she'll say "No Scared No Glad". We're not sure where the Glad
came in, but in her mind it's very linked with Scared. Yesterday I said I
was Glad about something, and she argued vehemently that I was not
Glad.<br />
<br />
When she IS scared about something, she tells us the way
things SHOULD be. Tomorrow is the "Spooky Run" at her school -
apparently the teachers will dress up in costumes and the kids will
chase them through the woods by the school. Sofia's not into it. "No
costumes. Just clothes." over and over this evening. She does NOT like
adults in costume!<br />
<br />
It's also interesting to see the things that
she does notice and focus on when learning. Today she went on a field
trip to Plimoth Plantation (for you non-locals, it's a living museum in
Plymouth that shows the original settlement of the Plymouth Colony
established in the 17th century by English colonists.) Yesterday, in
preparation, they watched a video about the Pilgrims and the Wampanoag
Indians. She came home all excited that she was going to see "Boys with
Tattoos. Girls just skins and feathers. Cooking. Boats."<br />
<br />
(Oh, and we found an Elsa costume - poor Rapunzel has been tossed aside...)</div>
<br />
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<br />
<h3>
October 30 - 31 for 21: Facts and Things about Down Syndrome</h3>
(mostly gathered from a pamphlet by the National Down Syndrome Congress)<br />
<br />
- Down syndrome is a chromosome variation with no known cause<br />
<div class="text_exposed_show">
<br />
- It is not related to race, nationality, religion or socio-economic status<br />
<br />
- in the US, approximately 1 in every 800 to 1000 children is born with DS<br />
<br />
- About 80% of babies with DS are born to women UNDER age 35<br />
<br />
- People with Down syndrome vary widely in mental abilities, physical
development, and behavior. Most people with DS experience some degree of
cognitive delay, but there is a wide spectrum of mental abilities,
developmental progress and behavior<br />
<br />
- Adults with Down syndrome
can hold jobs, live independently, and enjoy community life just like
anyone else. They can attend college and get married, too!<br />
<br />
- The chance of having a child with Down syndrome increases with the mother's age<br />
<br />
- The chance of having a SECOND baby with DS in a future pregnancy is only about 1%<br />
<br />
- 95% of people with DS have an extra 21st chromosome in every cell in their body - Trisomy 21 (this is what Sofia has)<br />
<br />
- 3% - 4% have an additional 21st chromosome attached to another chromosome. This is called Translocation Down syndrome<br />
<br />
- 1% have an extra 21st chromosome in some cells but not in others - this is Mosaic Down syndrome</div>
<br />
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<br />
<h3>
October 31 - 31 for 21: A Whole Month of Down Syndrome Awareness</h3>
Would I change anything?<br />
<br />
I would not change Sofia. She is Sofia, in all her glory.<br />
<div class="text_exposed_show">
<br />
I would change society.<br />
<br />
I would change how people - strangers - see my daughter. Because anyone who does know her knows how incredible she is.<br />
<br />
I would change how many play dates and parties she is invited to.
(Although thankfully she is invited to the parties from the day school
crowd, which more than makes up for not being invited from the public
school kids).<br />
<br />
I would change how hard she has to work to learn things. Reading and math take a very long time. But she is getting there.<br />
<br />
I would change old fashioned or closed-minded opinions (oh, wait, I do that already!).<br />
<br />
I would change the Milestone "charts" that tell me that my daughter is
Delayed. Instead, I would add in more "Savor that time" so that each
milestone reached is cause for celebration.<br />
<br />
I would change society's need for people to be The Same, and instead make sure we value Difference and Diversity.<br />
<br />
I would change access to excellent health care, support services and
educational assistance for anyone who needs it. Everywhere.<br />
<br />
I would change the world.<br />
<br />
I would NOT change Sofia.<br />
<br />
I would not remove that extra chromosome from every cell of her body. It is part of her, and what makes her Sofia.<br />
<br />
I might sometimes be tempted to change her more challenging behaviors.
Or I can just accept the challenge, and do my best to see things from
her point of view. <br />
<br />
Thank you for reading these 31 for 21 posts. It's been fun and challenging. And I'm REALLY glad it's over!<br />
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-4402266799656918272014-10-27T22:30:00.000-04:002014-10-27T22:30:18.680-04:00Oct. 24 - 27<h3>
October 24: Family </h3>
This is a double-purpose post. Not only is it today's
entry for Down Syndrome Awareness Month, but it's a Happy Birthday wish
to my beloved grandmother, Doris, who would have been 103 today. I still
miss her terribly, and yet every time I think of her, I get a huge
smile. She was amazing.<br />
<br />
When we told our family members that our
third child would have Down syndrome, we learned quickly to be careful.
After a few really unexpectedly strong reactions, we picke<span class="text_exposed_show">d
and chose who we would tell, and who could pass the news on to others.
For some people, I just did not want to deal with the reactions I
predicted; for others, I felt that they would stay calm enough to at
least hear us out.</span><br />
<div class="text_exposed_show">
<br />
But I
never even thought twice about telling my grandmother. It was the day
after Thanksgiving. We'd driven up to my uncle's house in Vermont on
Wednesday, and quietly told my cousin and his wife. We asked that they
not tell anyone else until Friday, since that was when we planned to
tell Grandma.<br />
<br />
We drove her back to CT on Thanksgiving, and had a
lovely time there as well. And on Friday, my brother-in-law, who is a
perinatologist, took us (me, my sister, David, and Grandma) to the
hospital to do an ultrasound of the baby.<br />
<br />
On the way, in the car,
I calmly mentioned to Grandma that the baby had Down syndrome. She was
quiet for a moment, then patted me on the knee, smiled, and said,
"You're really something, you know."<br />
<br />
And that was it. Beyond
being rather dazzled by the ultrasound, she never raised any objection
or argument. Never asked if we were sure. Never questioned that she
would love this great-grandchild just as much as all her others.<br />
<br />
Grandma got to meet Sofia many times; Sofia is still well-able to
identify her in photos. When Sof was about a year old, I took her down
to West Palm Beach just by myself, and it was lovely to have a "girls'
weekend" with Grandma. Doris was dazzled by my little princess.<br />
<br />
Another time, we were down in FL for one of David's conferences, and
Sofia got sick (darn respiratory infection!). Laura was with us, so we
dropped her and the boys at Grandma's house, and Grandma came with me
and Sofia to the pediatric emergency room. She was cool as a cucumber.<br />
<br />
I am so proud to be her granddaughter, and I can clearly see the Sofia
has many of her traits: her strength, her determination, her sense of
style. When I look at my daughter, I see my grandmother. And I love them
both so very much.<br />
<br />
Happy Birthday, Grandma. I still miss you. And you still make me smile.</div>
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<h3>
October 25: The Fashionista </h3>
This afternoon, we walked around the Mall. Rather, David and I followed Sofia around the mall. She shopped. Intensely.<br />
<br />
She went to the Mac makeup store and asked to get her makeup done. Note
the gold glitter on the eyelids. Then, she sashayed into Hanna
Anderson, where she tried on dresses. We got one on sale, so she then
had a sweet little bag to sling over her shoulder.<br />
<div class="text_exposed_show">
<br />
She continued to look at every store. She dragged me and David in
Armani, went right up to the sales lady, and said "Excuse me. I need
help. Mommy dress, Daddy clothing." We were not up to her standards.<br />
<br />
People with Down syndrome are people. First and foremost, people.
(Hence the "person-first" language. She's not "A down syndrome kid"...).
They have likes and dislikes. They are attracted to beauty, the same as
anyone else.<br />
<br />
A big problem, one I'm not looking forward to
dealing with, is when a teen girl with Down syndrome gets a crush on a
boy. Because we are trying to raise nice people, the boy may be nice to
her. May be kind or at least not overtly mean to her (I hope so, at
least). But teen girls are delusional to begin with; add to that the
cognitive delays of Down syndrome. She will take his politeness as
encouragement. She's in for a big let-down. I'm not looking forward to
that.<br />
<br />
I'm glad that Sofia has her own sweet flamboyant style. I'm
glad that she's so "out there" - as she walked through the mall, I
walked a little behind her and watched other people look at her. Kids,
especially, were really interested in her glittery eyes. She was happy
to talk to just about everyone. In the evening, when we were waiting to
get seated for dinner, she made friends with a group of young women
celebrating a 25th birthday. She compared shoes, clothing, and makeup
with them. Really adorable.<br />
<br />
But as she gets older, will it still be adorable? Will people still indulge her when she's not a cute little girl any more?<br />
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<h3>
October 26: Creativity</h3>
Sofia and Micah stayed home today while
the rest of us were out and about. They got creative and Micah filmed
several versions of a ballet "route" Miss Sofia made up.<br />
<br />
<div class="text_exposed_show">
It's about two and a half minutes, and fairly repetitive, but be sure
to skip to the end to see her curtsey! And I think she was mesmerizing
herself with the wand.<br />
<br />
<a href="https://www.youtube.com/watch?v=6OGDZU_Km4Y&feature=youtu.be" rel="nofollow" target="_blank">https://www.youtube.com/watch?v=6OGDZU_Km4Y&feature=youtu.be</a> </div>
<h3>
October 27: Religion </h3>
The night we got our amnio results, I wrote a letter
to my yet-to-be-born daughter. In it, I said I was worried about only
two things for her: her health (because of the high incidence of cardiac
issues in babies with Down syndrome) and her Jewish educational
opportunities.<br />
<br />
How was my daughter going to be able to go to
Jewish day school like her brothers? How was she going to learn the
prayers? Would she ever feel the joy and comfort I feel in synagogue?<br />
<br />
Well, it's been good. Really good.<br />
<br />
When she was a toddler, I saw a preview of "Praying with Lior", a movie
about a young boy with DS and his Bar Mitzvah. Even at that point, my
synagogue friends who saw it with me knew that Sofia was going to
surpass Lior's accomplishments.<br />
<br />
I of course let my beloved day
school know that they needed to start preparing for Sofia. And we tried,
really we did, to be a big enough school so that she could be a full
time student at MWJDS. But we're still such a tiny school, and we could
not give her all the learning support she needs. BUT - and this is huge -
we worked out a terrific "compromise". (And to me it wasn't a
compromise, it was just the right plan for Sofia). From kindergarten
through second grade, although she was a full time student at the public
school, twice a week I would pick her up at lunchtime and bring her to
MWJDS, where she was fully part of the class. The schedule was worked
out so that Judaic Studies, Music (which is heavily
Jewish-culture-related), Art, and Gym were all taught during times when
she was there. <br />
<br />
Our stated goals in her IEP for bringing her to
MWJDS were for 1. Judaic Studies, 2. Socialization (because the day
school is such an important part of our family life, it was important
for Sofia to be included and comfortable there), and 3. Behavior (a 1-1
aide at MWJDS made that a breeze). It was a great solution.<br />
<br />
Unfortunately, this year, in 3rd grade, it's not as feasible for a
number of reasons to continue pulling her out of public school twice a
week. And because her behavior is so...uh...independent right now, we
have not moved her to any alternate Jewish educational program.<br />
<br />
I
want to. Really I do. But my choices at the moment are our synagogue's
religious school, which is completely unequipped to support her needs,
and the "special needs religious school" in Newton, which is too far
away and completely outside our own community. It does not "work" for
us.<br />
So right now, Sofia is not enrolled in any formal Jewish
studies. However, that doesn't mean she gets nothing. We attend Shabbat
morning services fairly regularly, and she is an active participant in
the kid-friendly parts of the service. Recently, I've been hearing her
"sing" along with more of the prayers. And there is no one she loves
more than our Rabbi!<br />
<br />
I fully expect that we will celebrate Sofia
becoming a Bat Mitzvah - maybe not exactly when she turns 13. Maybe
we'll have to wait a little bit longer, for her to learn something
specific. But right now, she knows more than many kids her age. If we
keep our expectations high, she will get there. She might not do exactly
what her brothers do - she might not read Torah or chant Haftarah. But
she might. She surprises me constantly.<br />
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<br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com1tag:blogger.com,1999:blog-7926293667751454256.post-88571234933803226612014-10-24T00:02:00.001-04:002014-10-24T00:02:16.302-04:0031 for 21: October 23 - Don't Test Me! I had read about this before Sofia was born, but we are seeing it in action right now.<br />
<br />
<div class="text_exposed_show">
Children with Down syndrome are tested. Often. Continuously. By lots of
people. By their parents. By teachers. By therapists. By just about
everyone.<br />
<br />
"Show us how you do this." "Let's hear you read that." "How high can you count?"<br />
<br />
It's endless.<br />
<br />
So, quite naturally, they become very adept at knowing when they are
being tested. And they also become adept at blowing the test up in your
face.<br />
<br />
We see this a lot with Sofia and her conversations with
certain people, especially with David. She knows that he will "quiz"
her, by asking her lots of questions. So she shuts down. Either she
won't answer him, or she'll tell him he's "Bothering Me".<br />
<br />
We are
seeing it now in her schoolwork. This week, whenever we sat down to do
homework, either she would not cooperate to DO anything, or she would do
it all purposefully incorrectly. One sheet this week was to pick the
correct word to complete a sentence, given two words to choose from. For
the ENTIRE page, she picked the wrong word. And she knew what she was
doing. Tonight, she decided not to do her math correctly. Her counting
was all over the place, or she would make up numbers. And I've seen her
do the same pages so beautifully, so I know it was all attitude. She
also "completed" a word search by circling every letter in some random
combination - and pretended to sound out all the "words" she found.<br />
<br />
It's all attitude. She CAN do this stuff. She just CHOOSES not to. Her
teacher sees the same thing in school. When she's "on", she's terrific.
When she's in a mood, forget it.<br />
<br />
(She'll outgrow it,,,
eventually. This past summer, there was a gentleman in his 20s with DS
in the rental house next to us on the Cape. When his mom pointed out
that Sofia had DS, he said, "yeah, I used to have that, too." I think it
definitely was because now, as an adult, he is no longer TESTED all the
time!)<br />
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-74839101378061527912014-10-24T00:00:00.004-04:002014-10-24T00:00:57.663-04:0031 for 21: Soul Sisters (October 22) This one is about the people - mostly moms, but a few dads and
grandparents, too - I am privileged to call Soul Sisters. I would never
have met these people without Sofia.<br />
<br />
Some of them I have never
met in person ("IRL" = "In Real Life"), yet I am often more connected to
them than to my neighbors. Some I have had the great joy to meet, once,
twice or even more. <br />
<div class="text_exposed_show">
<br />
In Real Life, or just via the Internet, we have shared so much.<br />
<br />
We each of us love someone with Down syndrome.<br />
<br />
We each of us know what it's like to parent (or grandparent) a child with that extra chromosome.<br />
<br />
We have compared milestones, bragged, complained about medical and
support services, compared notes on IEPs and birthday parties.<br />
<br />
Sometimes we have visited or played together - at home or while
traveling. The two National Conventions I attended were mostly about
CONNECTING to those other families.<br />
<br />
Some of my Soul Sisters live nearby - Kathleen Horigan Dye, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=678352665" href="https://www.blogger.com/null">Kerri Daniels Tabasky</a>, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=100004088807074" href="https://www.blogger.com/null">Debbie Ellenbogen</a>. Some are spread across the country - <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=1565508604" href="https://www.blogger.com/null">Amy Parks Patterson</a>, Michelle Beausoleil Helferich, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=1126126215" href="https://www.blogger.com/null">Amy Strottman Flege</a>, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=100007040409272" href="https://www.blogger.com/null">Rebecca Pho</a>, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=587694130" href="https://www.blogger.com/null">Tara Marie Swanson Hintz</a>, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=695783625" href="https://www.blogger.com/null">Melissa Middendorf Hart</a>, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=804939847" href="https://www.blogger.com/null">Renee Toth</a>, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=100008032897175" href="https://www.blogger.com/null">Renee Garcia</a>. Some are in other countries - <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=724185169" href="https://www.blogger.com/null">Adina Rabinowitz</a> (and we have been so blessed to visit several times!). There are more - so many more.<br />
<br />
Some of us started out our journey together on the T21Online chat
board. Some of us were connected in person by other friends or
friends-of-friends (thanks, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=1837976237" href="https://www.blogger.com/null">Dori Cousley</a>!). <br />
<br />
Together, we parent and love these children. We give advice, offer a
virtual shoulder to cry on, raise a distant wine glass in a toast to
each other. <br />
<br />
We hold our breath and pray during medical crisis. <br />
<br />
Sometimes we have had to grieve together. Even when we grieve, it's
special. I still cherish the photos of my kids - all three of them -
wearing pigtails, in memory of a sweet baby who passed away after only 6
months of joy.<br />
<br />
This is one of the secret perks of having a child with Down syndrome. This amazing Community. My Soul Sisters.<br />
<br />
I may not have met all of you in person. I certainly don't get to see
any of you often enough. Thank G-d for Facebook! I cannot imagine
parenting this daughter of mine without your support, your guidance,
your friendship.<br />
<br />
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-26372850078584664002014-10-23T23:58:00.003-04:002014-10-23T23:58:58.069-04:00Oct. 20 - Princess?First, an article, originally found <a href="http://www.huffingtonpost.com/suzie-skougard/a-disney-princess-with-down-syndrome_b_6006964.html" target="_blank">here: http://www.huffingtonpost.com/suzie-skougard/a-disney-princess-with-down-syndrome_b_6006964.html</a><br />
<br />
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<a href="http://www.huffingtonpost.com/suzie-skougard/" rel="author"><span class="name fn"></span></a><a class="fan" href="http://www.huffingtonpost.com/users/becomeFan.php?of=hp_blogger_Suzie%20Skougard"></a></div>
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<h3 class="title">
A Disney Princess with Down Syndrome. Could It Work?</h3>
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<a href="http://www.huffingtonpost.com/suzie-skougard/" rel="author"><span class="name fn">Suzie Skougard</span></a> <span class="posted">
Posted: <time datetime="2014-10-20T20:13:58-04:00">
10/20/2014 8:13 pm EDT </time>
</span>
<span class="updated">
Updated: <time datetime="2014-10-20T20:59:02-04:00">
10/20/2014 8:59 pm EDT </time>
</span>
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<i>Growing up, I loved Disney movies. For most of my early life,
I wanted to be a mermaid when I grew up. But not just any mermaid; I
wanted to be Ariel. I'd belt my rendition of "Part of Your World" to any
and every audience I could find. It led to my parents putting me in
vocal lessons and carried with me, my entire life, effectively shaping
my career as a vocalist and a vocal music instructor. </i></div>
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<br /></div>
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<em>I now have
three daughters, two of whom are heavily into the Princess Phase. My
oldest's favorite is Belle because she has brown hair like her and she
likes to read books. My middle daughter is a fan of Anna from Frozen.
She's a little sister too and a true wild spirit. My youngest daughter,
while still too little to have any concept of Disney princesses for
now, won't have a Princess that looks like her and someday, she'll be
aware of that. My youngest has Down syndrome. </em></div>
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<br /></div>
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<em>There is a petition
sweeping the Internet asking Disney to incorporate a protagonist with
Down syndrome, but there is a backlash brewing even within the special
needs community asking, is it necessary?</em></div>
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<br /></div>
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<i>Keston Ott-Dahl,
the author of the petition, thinks it is, and I agree. According to the
U.S. Census, nearly one in five people have a disability, so one would
think this would be a great train for Disney to hop on, yet people with
disabilities are the most under-represented minority population in
television and film. Ott-Dahl targeted Disney because "Disney's focus is
children and this a great place to eliminate discrimination against the
disabled before it even begins. Children will grow up with a
familiarity, understanding and compassion for the disabled thus
discrimination can be a non-issue for future generations to come." It's a
message anyone can get behind, so you'd think their marketing
executives would be all over it. But they haven't. Is it just too hard? </i></div>
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<br /></div>
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<i>The
Down syndrome community pushes the slogan, "more alike than different,"
but Disney would have to draw on the differences to make it apparent
that any Princess had Down syndrome. We'd expect to see the typical flat
facial features, almond-shaped eyes and a short stature associated with
it. That in itself is a fine line to walk because every individual with
Down syndrome is affected differently. Some may have a significant
showing of traits while others with very little. While viewers would
take issue if the first disabled princess showed nothing of her
disability, I'd also venture to say that most would be upset if our
children seemed trivialized or stereotyped in any way. Showing a
princess in a wheelchair would be the safe route to showcase a
disability, sort of like American Girl did with their dolls, but then it
leaves children with Down syndrome underrepresented yet again and still
without someone on screen to look up to. </i></div>
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<br /></div>
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<i>Furthermore, while the
Down syndrome community has many unifying characteristics, there are
also a lot of differences because Down syndrome can affect anyone
regardless of race, gender or socioeconomic status. If they chose a
blonde-haired, fair-skinned, blue-eyed girl with Down syndrome, would
the dark-haired, dark-skinned, brown eyed little girls with Down
syndrome still relate as well? </i></div>
<div style="text-align: right;">
<br /></div>
<div style="text-align: right;">
<i>And then there are those within
the Down syndrome community who are arguing that there are bigger
problems to address, and that effort is a waste of time. Regardless, the
petition still raises the issue that we need more heroes right now that
are identifiable for children with Down syndrome. They just aren't out
there.</i></div>
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<br /></div>
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<br /></div>
<h3 style="text-align: left;">
Now my own 31 for 21 Post in response:</h3>
Ok, this will be my 31 for 21 post today. Sofia is DEEPLY into the
Princess Phase. She IS Elsa. She IS Rapunzel. She IS Tiana. She IS Ariel
(yuch - foolish whiny teenager!). Would she care if there was a
princess with Down syndrome?<br />
<br />
Right now, she has no problem
relating to any of these characters. Dark skin or light, long hair or
short, legs or fins. It makes no difference to Sofia.<br />
<br />
Would having a princess with Down syndrome force Sofia to ONLY relate to that princess? Woul<span class="text_exposed_show">d it limit her imagination? </span><br />
<div class="text_exposed_show">
<br />
Out in the real world, Sofia generally does not notice anything special
about other people with Down syndrome. She does not "relate" to them
any more than to anyone else.<br />
<br />
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<h3 style="text-align: left;">
<i> </i></h3>
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-71210082833422779582014-10-23T23:54:00.004-04:002014-10-24T00:02:26.425-04:0018-20 DS Awareness Month<h3>
October 18</h3>
<span class="fbPhotosPhotoCaption" data-ft="{"tn":"K"}" id="fbPhotoSnowliftCaption" tabindex="0"><span class="hasCaption">Sofia found a friend to keep her amused during Sabrina's Bat Mitzvah.</span></span><br />
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<br />
<h3>
October 19</h3>
<div class="_5pbx userContent" data-ft="{"tn":"K"}">
Too
tired for a lengthy 31 for 21 post today. Sofia had a lot of fun at the
Bat Mitzvah this weekend - as yesterday's photo shows, she spent much
of the service sitting in another room tossing her bean-bag lizard
around with friends. When you have someone with Special Needs in your
family, sometimes you have to get creative with how you manage your
activities.<br />
She had fun at the evening party, but then she got SO
tired. We managed to find a handy 12 year old babysitter, so David was
able to come back to the party after taking her home.<br />
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<br />
<h3>
October 20: Sofia's Birth Story</h3>
As I mentioned in a previous post, once we
knew that Sofia would be "Chromosomally Enhanced" we shifted our
prenatal care into Boston. Besides the three fetal echocardiograms, we
had lots of checkups and ultrasounds. There are a lot of things that can
go wrong with a pregnancy if the fetus has Trisomy 21 (Down syndrome).
So we were very delighted to be able to have excellent care.<br />
<br />
I spent the last few months of the pregnancy getting ready, and t<span class="text_exposed_show">hat
included making sure everyone else had all their checkups done. I let
the boys' Ear, Nose & Throat specialist know that Sofia was coming
(and asked if we would get discount on the third set of ear tubes -
turns out Sofia was my only child who did NOT need them!).</span><br />
<div class="text_exposed_show">
<br />
In early February, the doctor led me to believe that he would induce me
early. But then David and I went for an appointment on February 17, and
the doc assured us he would let the baby stay in as long as possible.
This was only week 36.<br />
<br />
So David and I drove home from Boston, and
went directly to Toyota to order the minivan - one of the final items
on our list. After that and a quick bite to eat, David dropped me off at
shul for my Me'ah Graduate Institute Class, and then he went home to
see the boys.<br />
<br />
And then my water broke!<br />
<br />
So David got the
babysitter to come back, picked me up at shul and we high-tailed it back
to Boston. Sofia was born at 4:44 am, after only a few pushes (my
babies come out quick!).<br />
<br />
And then I laughingly "yelled" at the doctor for telling me I still had a few weeks to go.</div>
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-68711845545708262922014-10-17T17:17:00.001-04:002014-10-17T17:17:17.577-04:0031 for 21: October 16 & 17<h3>
October 16: Dancing Fool!</h3>
Tonight was Simchat Torah, when we
celebrate by dancing with the Torah. This is truly Sofia's favorite
holiday. She loves to dance. She loves to move her body. She loves the
noise and the people and the excitement.<br />
<br />
At one point this
evening, all 9 nine Torahs were being held in a circle, as everyone
danced around. And in the very center of the circle was Miss Sofia.<br />
<br />
<div class="text_exposed_show">
She loves to dance. I don't know if it's because of the extra
chromosome, or if she just does not feel embarrassed to be fully and
truly free in her dancing. But she is a wonder to watch.</div>
<br />
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<h3>
October 17: Self-Talk</h3>
Do you talk to yourself? Out loud? I do. Most of the people I know do, too (even if they don't want to admit it!).<br />
<br />
People with Down syndrome talk to themselves, too. "Self-talk plays an
essential role in the cognitive development of children. Self-talk helps
children coordinate their actions and thoughts and seems to be an
important tool for learning new skills and higher level thinking." <br />
<div class="text_exposed_show">
<br />
<i>(From “Self-Talk” in Adults with Down Syndrome, By Dennis McGuire,
Ph.D., Brian A. Chicoine, M.D., and Elaine Greenbaum, Ph.D, 2005.)</i><br />
<br />
Sofia talks to herself. Often. And often I talk back to her, because I
don't recognize that she's just talking to herself. So I engage in and
encourage the conversation, pushing her to expand from self-talk to
interactive communication.<br />
<br />
Much of the time, Sofia talks about
her movies. She's really into "Frozen" just now, and likes to talk about
snow and "Let It Go" (she has plans to sing that on "stage" at shul
some time soon...). But she's also into "Tangled" (about Rapunzel) and
the Madagascar movies and the Cars movies and the Despicable Me movies
and Aladdin and The Frog Princess and Mamma Mia. And food <br />
<br />
Often, people with Down syndrome will engage in self-talk throughout
their adult lives - JUST LIKE EVERYONE ELSE. However, since they may not
be able to identify it as "just talking to myself", often it is
mistaken for a psychological problem. <br />
<br />
"Since it is extremely
difficult to evaluate the thought processes of adults with cognitive
impairments and limited verbal skills, we urge a very cautious approach
in interpreting and treating what seems to be a common and at times very
helpful coping behavior for adults with DS."<br /> <i>(from the same article as quoted above).</i><br />
<br />
<i> </i>Right now, Sofia has me to "interpret" for her when she self-talks in
public. But we worry - David especially - about what will happen as she
goes off into the real world on her own more often. How will people
perceive her when she self-talks? How will people treat her?<br />
<br />
My
own opinion is that all we can do is continue to educate and advocate.
Any of you reading this now know something about self-talk. The next
time you see an adult with a cognitive impairment engage in self-talk,
you might be able to help advocate for them!<br />
<br />
But if you see Sofia
self-talking, feel free to ask her some questions! She's usually happy
to try to explain what she's thinking about.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://3.bp.blogspot.com/-pfya_stvS20/VEGHRPICzBI/AAAAAAAACR4/KmeV2YYAj-Q/s1600/Rothkopf%2C%2BSofia%2B(1)%2C%2BMicah%2B(4)%2C%2BSam%2B(8)%2C%2BFrancine%2B(Staff)(2).jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-pfya_stvS20/VEGHRPICzBI/AAAAAAAACR4/KmeV2YYAj-Q/s1600/Rothkopf%2C%2BSofia%2B(1)%2C%2BMicah%2B(4)%2C%2BSam%2B(8)%2C%2BFrancine%2B(Staff)(2).jpg" height="320" width="121" /></a></div>
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-31623716479908624862014-10-17T17:15:00.000-04:002014-10-17T17:15:10.170-04:0031 for 21: October 15 - in someone else's voice...<h4>
This appeared in <a href="http://america.aljazeera.com/opinions/2014/10/down-s-behind-thesmiles.html">http://america.aljazeera.com/opinions/2014/10/down-s-behind-thesmiles.html</a> on October 15. I'll let it stand as my own post, too. </h4>
<div class="articleOpinion-inner articleOpinion-inner--bottom">
<h3 class="articleOpinion-standfirst opinion-standfirst">
How the Down community sugarcoats difficult realities about the condition</h3>
<div class="articleOpinion-dateByline opinion-dateByline">
<div class="articleOpinion-dateTime opinion-dateTime">
<i><span class="date">October 15, 2014</span>
<span class="time">2:00AM ET</span></i>
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<i>
</i><div class="articleOpinion-containerByline">
<i><span class="articleOpinion-byline">
by
<a class="articleOpinion-byline--link" href="http://america.aljazeera.com/profiles/p/david-m-perry.html" title="David M. Perry">David M. Perry</a>
<span class="articleOpinion-contact">
<span class="articleOpinion-twitter">
<a class="articleOpinion-twitter--link" href="http://www.twitter.com/lollardfish" target="_blank" title="@lollardfish">@lollardfish</a></span></span></span></i></div>
<div class="articleOpinion-containerByline">
<i><span class="articleOpinion-byline"><span class="articleOpinion-contact"><span class="articleOpinion-twitter">
</span>
</span>
</span></i>
</div>
</div>
</div>
<div class="parsys mainpar">
<div class="text section">
Thirty years ago, <a href="http://www.special-and-determined.com/down-syndrome/time-to-reflect-on-history-ronald-reagan-signing-resolution-declaring-october-national-downs-syndrome-month/" target="_blank">Ronald Reagan</a>
declared October Down Syndrome Awareness Month. Ever since, too many
efforts at awareness have relied on pictures of people with Down
syndrome being cute, accompanied by constant, upbeat assertions that
they and their families are all very happy.<br />
Throughout October, adorable photos of people with Down syndrome and
heartwarming, inspirational stories will stream across the Internet, all
in the name of awareness. Shirts declare that extra chromosomes make
you a hero. Other slogans and memes praise parents of children with Down
syndrome. One T-shirt proclaims, “<a href="http://teespring.com/Nofrownsjustdowns?utm_medium=retargetingTA" target="_blank">No frowns, just Downs</a>!”<br />
<br />
In fact, sometimes my son, a 7-year-old with Down syndrome, frowns.
So do his parents. In the Down syndrome community, we have worked so
hard to promote the positives that too frequently we leave no space to
discuss the struggles.<br />
</div>
<div class="subHeading section">
<h2 class="subHeading-title">
Inspiration porn</h2>
</div>
<div class="text section">
<a href="http://www.ndss.org/Down-Syndrome/What-Is-Down-Syndrome/" target="_blank">Down syndrome</a>,
also known as trisomy 21, is a common mutation in which early embryonic
cell division results in an extra copy of a chromosome. It causes a
wide range of developmental delays, from very mild to severe, though our
understanding of the potential of people with the condition continues
to evolve.<br />
<br />
The Down syndrome community, understandably, is deeply invested in
spreading the relentlessly positive messages about the condition. In
March, for World Down Syndrome Day, people were supposed to wear <a href="http://www.worlddownsyndromeday.org/lots-of-socks" target="_blank">funny mismatched socks</a> in service of awareness. A viral video <a href="https://www.youtube.com/watch?v=aCJQAm_uKyg" target="_blank">showed people with Down syndrome</a> dancing to Pharrell’s song “Happy.” Another, “<a href="https://www.youtube.com/watch?v=Ju-q4OnBtNU" target="_blank">Dear Future Mom</a>,”
offers heartwarming testimony from people with Down syndrome around the
world to a hypothetical future mother of a Down syndrome child. At the
end, they assure her, “People with Down syndrome can live a happy life.”
Over 5 million people have watched it. I love this video. Happy lives
are good, but is happy enough? What about inclusion, support, jobs,
education, accessibility? How do we get past the low-hanging fruit of
happy to do the hard work that our community needs?<br />
<br />
It’s true that cute can go viral in a way that serious and thoughtful
does not. However, such images often generate superficial responses:
Viewers see the pictures, say “Aww” and move on. They do not become more
aware of the real difficulties faced by the disability community. <br />
<br />
There’s a term for this: “<a href="http://www.abc.net.au/news/2012-07-03/young-inspiration-porn/4107006" target="_blank">inspiration porn</a>.”
It describes images and stories in which the everyday actions of
disabled people are repurposed to inspire people without
disabilities. In the Down syndrome community, we have come to rely on “<a href="http://www.thismess.net/2013/10/down-syndrome-and-sweetness-porn.html" target="_blank">cuteness porn</a>.”
We teach the public that our kids are cute, but if that’s the end of
the interaction, we have done nothing to build a more inclusive society.
In fact, we may have erected new lines of exclusion by implying that
only people with “cute” disabilities matter.<br />
</div>
<div class="subHeading section">
<h2 class="subHeading-title">
Please try again</h2>
</div>
<div class="text section">
Part of the sugarcoating stems from fear. Down <a href="https://www.blogger.com/null">syndrome</a> can be
detected prenatally. As technology changes, more women are being
screened early in their pregnancies, resulting in fewer people with Down
syndrome being born (although the <a href="http://www.downsyndromeprenataltesting.com/is-it-already-happening-or-are-down-syndrome-births-disappearing-because-the-all-time-low-u-s-birthrate/" target="_blank">precise causality is hard to track</a>).<br />
<br />
In response, the Down syndrome community is trying to change the
perception of what a diagnosis means. Both pro-abortion-rights and
anti-abortion individuals — including parents, caregivers,
self-advocates and medical professionals — have joined in a loose
coalition they have dubbed <a href="http://www.thismess.net/2014/06/pro-choice-pro-information-anti-eugenics.html" target="_blank">pro-information</a>.
Pro-information materials aim to correct the incomplete information
that leads many women to terminate their pregnancies after a diagnosis
or screening. The solution is to make sure that women in such a
situation get a complete picture before making an irrevocable decision.<br />
<br />
Pro-information laws have begun appearing in some states, though not
without becoming tools <a href="http://www.thismess.net/2014/06/keep-abortion-politics-out-of-pro.html" target="_blank">for anti-abortion</a> activism <a href="http://nursingclio.org/2014/07/29/prenatal-testing-and-counseling-the-new-front-of-the-abortion-wars/" target="_blank">in some cases</a>.<br />
<br />
</div>
<div class="pullQuote section">
<div class="pullQuote-box">
<div class="pullQuote-quote">
My son’s value as a person is not based on his cuteness. What matters is our shared humanity.</div>
</div>
</div>
<div class="text section">
The pro-information message offers a well-developed and complex
response that I support. Such thoroughness isn’t, however, how we
generally respond when issues related to Down syndrome enter public
discourse.<br />
<br />
Here’s an example: In mid-August, the scientist Richard Dawkins told
his million Twitter followers what he would do in the case of a prenatal
diagnosis. He <a href="https://twitter.com/RichardDawkins/status/502106262088466432" target="_blank">tweeted</a>, “Abort it and try again. It would be immoral to bring it into the world if you have the choice.” He then <a href="http://www.theguardian.com/science/2014/aug/21/richard-dawkins-apologises-downs-syndrome-tweet" target="_blank">tried to explain</a>
that his core principle in life was “a desire to increase the sum of
happiness and reduce suffering.” He saw Down syndrome as a devastating
disability that increased suffering.<br />
<br />
After Dawkins’ tweets, disability activists around the world leapt to
social media, the press and the airwaves, sharing cute pictures of
people with Down syndrome. And boy, are they cute — <a href="http://www.pinterest.com/pin/209065607676695640/" target="_blank">princesses</a> and <a href="https://fbcdn-sphotos-e-a.akamaihd.net/hphotos-ak-xpa1/v/t1.0-9/10570309_10152666809158588_8798267551770963764_n.jpg?oh=8973dc9671b488e37ec7c286b60fd7e0&oe=5463D456&__gda__=1416627264_6176a4505519cc11c2f584a2e456e617" target="_blank">big grins</a>
(that’s Trig Palin) and so much more. The argument of all these posts
and comments was this: If Dawkins wants to increase happiness, then look
at our families; we’re happy, so Dawkins is wrong.<br />
<br />
In The New York Times, <a href="http://www.nytimes.com/2014/08/29/opinion/the-truth-about-down-syndrome.html?smid=fb-share&_r=0&referrer" target="_blank">two scientists joined the fray</a>.
Jaime Edgin and Fabian Fernandez presented research that individuals
with Down syndrome can experience both happiness and success, <a href="http://aaiddjournals.org/doi/abs/10.1352/1944-7558-119.5.389" target="_blank">citing</a> <a href="http://www.ncbi.nlm.nih.gov/pubmed/20146741" target="_blank">data</a> <a href="http://www.brianskotko.com/images/stories/Files/ajmg%20self-advocates%20final%20paper.pdf" target="_blank">from</a> <a href="http://mddlab.arizona.edu/edginWS.pdf" target="_blank">many</a> <a href="http://www.nature.com/neuro/journal/v10/n4/abs/nn1860.html" target="_blank">studies</a>.
The picture of general stability and happiness of families in which a
member has Down syndrome has been called the Down syndrome advantage.<br />
<br />
All of this is true. My son has Down syndrome, and at the end of
every day, he walks into the kitchen, wraps his arms around his chest,
then says and signs the word “love.” He calls us — “Mommy!” “Daddy!” <a href="https://www.blogger.com/null">“Ellie!” W</a>e
all come, he leans on a parental shoulder, and the four of us embrace
for an intense daily moment of connection. His love is the glue that
holds our family together. We are intensely lucky and happy.<br />
<br />
He also happens to be supercute. But his value as a person is not based on his cuteness. What matters is our shared humanity.<br />
</div>
<div class="subHeading section">
<h2 class="subHeading-title">
‘Cute’ discriminates</h2>
</div>
<div class="text section">
There’s another problem: Not everyone in the Down syndrome community
is happy. I know people fighting cancer, parents fighting school
districts, fighting to find respite care or fighting to locate <a href="http://projects.aljazeera.com/2014/portrait-of-down-syndrome/" target="_blank">meaningful work</a> for adults with Down syndrome.<br />
<br />
Moreover, the Down syndrome advantage, taken too far, drives a wedge
between groups of people with disabilities rather than promoting
solidarity. There are people with disabilities who are not, by the
standards of our society, cute or happy. There are people whose
disabilities make life very hard for them, their families and their
communities. Disability can increase suffering. Disability can limit
happiness. Disability can cause stress and pain. If we accept the
premise that Down syndrome should be valued because people with Down
syndrome are happy, then does that mean everyone who isn’t happy lacks
value?<br />
<br />
The Stanford art historian Sianne Ngai is an expert on the meaning of cuteness. She <a href="http://www.cabinetmagazine.org/issues/43/jasper_ngai.php" target="_blank">writes</a>,
“Cuteness is a way of aestheticizing powerlessness … Cute objects —
formally simple or noncomplex and deeply associated with the infantile,
the feminine, and the unthreatening — get even cuter when perceived as
injured or disabled.” The emphasis on cute, sweet, angelic and similar
flat positive stereotypes does two things. First, it renders people with
Down syndrome less than fully human. Pets are cute; humans are
complicated. Our fear of eugenic abortion has led the community to adopt
a mode of representation that erases those human complexities.<br />
<br />
Second, if abortion is the problem, then cute isn’t even the answer
for that. If we assert that life with Down syndrome is valuable because
our kids are cute and our families are happy, even if that’s always
true, then all we do is push the eugenic line down the <a href="http://www.wiu.edu/starnet/pdf/B-32.pdf" target="_blank">disability hierarchy</a>.<br />
<br />
As a parent of a boy with Down syndrome, I have committed to the long
game, not the low-hanging fruit of cute and happy. My goal is not to
save Down syndrome but to change the way we think about and understand
disability, normality and diversity.<br />
<br />
Step one: See the whole person, not just the cute face.<br />
<br />
</div>
</div>
<div class="authorProfileBio">
<div class="authorProfileBio-box">
<i>David M. Perry writes on language and power at <a href="http://www.thismess.net/2014/07/cult-of-compliance-deaf.html" target="_blank">How Did We Get Into This Mess?</a> He is a history professor at <a href="http://domin.dom.edu/faculty/dperry/" target="_blank">Dominican University</a>. </i><br />
</div>
</div>
<br />
<br />
But I've gotta have a photo of Sofia:<br />
<br />
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<a href="http://3.bp.blogspot.com/-q_k8OImbpcQ/VEGGwXIARoI/AAAAAAAACRw/9l_sZ2c9bPw/s1600/10014859_728960977148911_1228565059_o.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://3.bp.blogspot.com/-q_k8OImbpcQ/VEGGwXIARoI/AAAAAAAACRw/9l_sZ2c9bPw/s1600/10014859_728960977148911_1228565059_o.jpg" height="213" width="320" /></a></div>
<br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-46274735151094634142014-10-14T22:58:00.000-04:002014-10-14T22:58:08.246-04:0031 for 21: Oct. 10 - 14<h3>
October 10</h3>
Sofia doing math homework (VIDEO)<br />
<br />
<h3>
October 11: Down Syndrome Buddy Walk</h3>
Tomorrow is the Buddy Walk! Such a fun event. It's not too late to join us, too!<br />
<br />
However, I'm completely tapped out of ideas tonight, so I'm just
copying this from the Mass Down Syndrome Congress (MDSC) website:<br />
<div class="text_exposed_show">
<br />
The MDSC Buddy Walk® Program gives individuals, schools, community
groups, and local businesses across the state an opportunity to get
involved in fundraising campaigns and events year-round, all intended to
promote the acceptance and inclusion of people with Down syndrome. <br />
The statewide campaign is anchored by our signature Buddy Walk &
Family Festival. It also includes major and minor events throughout
Massachusetts, such as Buddy Walk by the Sea on Cape Cod, the Buddy Walk
& Harvest Fair in Central Massachusetts, a number of school
fundraisers, Buddy Bucks Store campaigns, and other fundraisers endorsed
by the MDSC. <br />
<br />
This year’s theme “Champions!” is based on the
Boston Strong mentality of people coming together to overcome challenges
and the positive sense of community pride that has developed as a
result. We’ll be able to highlight the true Champions of the Down
syndrome movement here in Massachusetts and demonstrate the resilience
of our community and how we all pull together to ensure that people with
Down syndrome everywhere have opportunities to lead fulfilling lives.<br />
<br />
History: <br />
<br />
The Buddy Walk is an advocacy initiative launched in 1995 by The
National Down Syndrome Society. It serves as a vehicle to generate
significant awareness and understanding of Down syndrome nationally,
while simultaneously raising critical funds to support local programs
and services offered by The MDSC. As a proud affiliate of The NDSS, a
portion of all proceeds from Buddy Walk campaigns go to support national
advocacy initiatives aimed at improving the quality of life of
individuals with Down syndrome.<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="http://1.bp.blogspot.com/-etzCjcCpvYw/VD3hV6vHTYI/AAAAAAAACOQ/L7JqL2EA8B0/s1600/IMG_2712_2.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" src="http://1.bp.blogspot.com/-etzCjcCpvYw/VD3hV6vHTYI/AAAAAAAACOQ/L7JqL2EA8B0/s1600/IMG_2712_2.jpg" height="320" width="267" /></a></div>
</div>
<br />
<h3>
October 12</h3>
<div class="_5pbx userContent" data-ft="{"tn":"K"}">
No
major post today for Down Syndrome Awareness Month. I'll let the photos
speak for themselves - the Buddy Walk was FABULOUS! Miss Sofia was in a
major grumpy mood the whole time, except when she got to see
Tinkerbell. We are SO tired now!<br />
<span class="userContentSecondary _c24"> </span></div>
<br />
<div class="separator" style="clear: both; text-align: center;">
</div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-HSb_aeeYcCM/VD3hyfAKYtI/AAAAAAAACOg/cnOdsOtF7sE/s1600/IMG_3092.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-HSb_aeeYcCM/VD3hyfAKYtI/AAAAAAAACOg/cnOdsOtF7sE/s1600/IMG_3092.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sofia with Arlie, Kendra and Kathy</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-et1U-VQ3hPM/VD3hyQjKdhI/AAAAAAAACOY/TZafziU8tU4/s1600/IMG_3093.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-et1U-VQ3hPM/VD3hyQjKdhI/AAAAAAAACOY/TZafziU8tU4/s1600/IMG_3093.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Micah and David, looking cool</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://2.bp.blogspot.com/-mB0rL6xB-Pw/VD3hyRipqFI/AAAAAAAACOc/gcLaczb-Ego/s1600/IMG_3095.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://2.bp.blogspot.com/-mB0rL6xB-Pw/VD3hyRipqFI/AAAAAAAACOc/gcLaczb-Ego/s1600/IMG_3095.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sam</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-T80NkzZbzE0/VD3hy0utXhI/AAAAAAAACOk/c9bfFxMY0EQ/s1600/IMG_3104.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-T80NkzZbzE0/VD3hy0utXhI/AAAAAAAACOk/c9bfFxMY0EQ/s1600/IMG_3104.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Sofia, Arlie, and Tinkerbell!</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-9-qd3UpvzKo/VD3hy3wjXAI/AAAAAAAACOo/Os-fGzu0YYg/s1600/IMG_3111.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-9-qd3UpvzKo/VD3hy3wjXAI/AAAAAAAACOo/Os-fGzu0YYg/s1600/IMG_3111.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Blissing out in the sensory box</td></tr>
</tbody></table>
<br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/-NG9ib5YOKgs/VD3hzcTAGBI/AAAAAAAACO0/eWITpAzKc1c/s1600/IMG_3119.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/-NG9ib5YOKgs/VD3hzcTAGBI/AAAAAAAACO0/eWITpAzKc1c/s1600/IMG_3119.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Ready to walk</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://4.bp.blogspot.com/-3rlkiMLhSxE/VD3hzVhWMbI/AAAAAAAACO4/yZ_v8Ip9OYs/s1600/IMG_3122.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://4.bp.blogspot.com/-3rlkiMLhSxE/VD3hzVhWMbI/AAAAAAAACO4/yZ_v8Ip9OYs/s1600/IMG_3122.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Arlie, SamB and Victoria</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://1.bp.blogspot.com/--aZrIqel2_8/VD3hzuBH0LI/AAAAAAAACQE/N8Lf0ZBDVzI/s1600/IMG_3123.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://1.bp.blogspot.com/--aZrIqel2_8/VD3hzuBH0LI/AAAAAAAACQE/N8Lf0ZBDVzI/s1600/IMG_3123.jpg" height="213" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Taking a call</td></tr>
</tbody></table>
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://3.bp.blogspot.com/-W59r6bpYJXE/VD3hzw6n9BI/AAAAAAAACO8/UPsHM37NZS4/s1600/IMG_3124.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="http://3.bp.blogspot.com/-W59r6bpYJXE/VD3hzw6n9BI/AAAAAAAACO8/UPsHM37NZS4/s1600/IMG_3124.jpg" height="320" width="213" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Me and my girl</td></tr>
</tbody></table>
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<h3>
October 13: Being Herself</h3>
Sofia is all about being Sofia. Even
when she is Princess Sofia - or Else (from Frozen) or Rapunzel (from
Tangled) or Tiana (From the Princess & The Frog) - she is still
Sofia. Her Sofia-ness is awesome.<br />
<br />
She is never afraid to be herself. <br />
<div class="text_exposed_show">
<br />
She'll stop to do "yoga" or "exercise" in the middle of... just about everywhere. <br />
<br />
She ran to join another family tossing around a football yesterday
before the Buddy Walk. Just joined right in (and yelled "Leave 'Lone,
Mom!"). <br />
<br />
For the past few months, she has been telling us that
when she turns 10 (in February) she will get married. When I ask who she
will marry, the answer is, "Sofia." Of course. Who else would be
deserving of such awesomeness?<br />
<br />
I'm not a shy person. (I know,
news flash!). But my daughter's lack of shyness is breathtaking. She is
so proud of herself. So bold. So brave. <br />
<br />
I watch her, and I am ever amazed. And a teensy bit jealous.<br />
<br />
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<h3>
October 14: Endocrinology</h3>
People with Down syndrome are more prone to
thyroid issues. So we monitor Sofia's thyroid numbers regularly. Once,
her numbers got closer to the "needing treatment" range, but then they
went back to normal. Been fine ever since.<br />
<br />
So we have been very lucky with that. But she still needs to have a blood draw every 4-6 months. <br />
<div class="text_exposed_show">
Blood draws - or as Sofia calls it, "Bloody Arm" - are not fun for kids. They are less fun for the grown-ups involved.<br />
<br />
It generally takes at least three adults to hold her steady for a blood
draw. She's gotten too big for my lap (which is a shame, since the
blood draw chair also has that lovely built-in "arm"). So now she lays
down on the bed, and I hold her upper body, non-draw arm, and her legs. A
lab tech holds the arm that's being worked on. And another tech draws
the blood.<br />
<br />
The lab staff at Children's in Waltham is fabulous. Boston, not so much. They often have to call in a few extras.<br />
<br />
When we take the boys for blood work, Sofia makes a big point of
holding har arm tight behind her back and saying "No Bloody Arm" over
and over. And moving well out of range.<br />
<br />
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-91712484562490485242014-10-09T21:13:00.000-04:002014-10-09T21:13:04.191-04:00October 9: IndependanceI’ve always looked at the developmental delays that come with the extra chromosome as sort of a motherhood-bonus: my baby, my last child, my little girl, stays a baby longer. With other kids, the milestones whiz by. With a child with Down syndrome, you get to savor every single milestone, because there is plenty of time in between each of them.<br /><br />But Sofia is nine and a half years old now. She is no longer a baby. <br /><br />And she’s starting to let me know it!<br /><br />I’ve been talking to friends about last Saturday, and what a difficult day it was for me with her. And I’ve come to the realization that it was MY problem. Not hers. My problem that I could not let her go, let her do what SHE wanted to do. I needed to control her, the way I’ve always controlled her.<br /><br />She is a young lady now. A very opinionated young lady, with likes and dislikes of her very own.<br /><br />As my friend <a href="http://mdbeau.blogspot.com/2014/10/she-wants-me-to-back-off.html" target="_blank">Michelle over at Big Blueberry Eyes</a> just wrote tonight, I need to back off. I need to give Sofia some space to grow, to be her own person. Not my little shadow.<br /><br />She lets me know - in no uncertain terms - when I should “Go ‘Way”. When I should “SHH! Be Quiet!”. And when I should “Leave ‘Lone! Bothering Me!”.<br /><br />I’m just not always ready to hear her.<br /><br />Recently the independence has shows in her shopping habits. Previously, she was content to come along with me, look at stuff, maybe touch or grab but not argue too much when I said no. That’s gone. Going to the grocery store is an exercise is preteen attitude and arguing. “Buy This!” - and something is plopped into the shopping cart. “Oooh! We Need This!” and something else lands in the cart. “Yes Mom! I Love It!”.<br /><br />At the mall on Sunday afternoon, after waiting patiently to get her makeup done by the lady at the Origins store, we followed Sofia as she went shopping. First she had to check out the clothing in Hannah Anderson. Then it was jewelry shopping. Then into Vera Bradley (where they actually gave her a small change purse!). Then William Sonoma. Then Chico's (ok, granted, I was shopping there, but she made David help her try on more jewelry).<br /><br />She’s ready for the world. She’s ready for BOYS. Fortunately, her biggest crush is on her brother Sam. But she’ll take any opportunity to dance with a handsome guy - the DJ at a B’nei Mitzvah party; the director of her camp on “Prom” day. She knows a good thing when she sees it. She knows what she likes.<br /><br />I’m soooo not ready! But I’m going to have to try.<br /><br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-65891242997110163292014-10-08T22:33:00.004-04:002014-10-08T22:33:54.264-04:00Down Syndrome Awareness Month (5-8)<h3>
October 5: Friends</h3>
Yesterday afternoon, while all the grownups and teens napped, Sofia
and her cousin Lilie spent several hours indulging in raucous
imaginative play. Tea Parties, babies, clothing, shopping, makeup,
hairstyles. They were very detailed in their explanations to each other.
Even though Lilie talks way more than Sofia, Sofia was doing a great
job making her own wishes and ideas known. It was fun to just stay in
bed and listen to them chatter away.<br />
<br />
Playing with friends an<span class="text_exposed_show">d
family is so important for Sofia, as it is for any child. Although she
has several school friends whom she adores - the two buddies in
SubSeparate with her, her best friend G from the day school, and dear
neighbor S, I think that Lilie and Micah are probably her two closest
friends. Purely for the amount of time they spend together, they are
able to do more and communicate better. </span><br />
<br />
<div class="text_exposed_show">
Sofia does not get invited to birthday parties from the public school
classmates, although while she was at the day school she was always
included in parties. We are a social family, and get together with other
families often, so she has plenty of group-time, but I hope that as she
gets older, she will be able to have more one-on-one time with friends
and play the way she plays with Lilie.</div>
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<h3>
October 6: The Eyes. </h3>
Sofia is nearsighted, like just about every
single person in our family. People with Down syndrome are prone to
vision issues (they are also prone to issues with hearing, but Sofia's
hearing is terrific; she goes for screenings every other year, and so
far all is well with her ears).<br />
<br />
When Sofia was toddler, we took
her to the ophthalmologist, who was able to determine that she was
nearsighted, but did not need glasses yet. Over the years, I would take
her<span class="text_exposed_show"> back to the doctor because we thought she was cross-eyed.</span><br />
<div class="text_exposed_show">
<br />
"She's not cross-eyed," he'd say, and kick me out. (He really needed to retire!). <br />
<br />
A couple of years ago, we switched to ophthalmologists at Children's in
Waltham. By now, it was clear that she was having difficulty seeing the
television. It turns out that the "cross-eyed" look is because she
focuses with only one eye at a time. And it's not consistent. Sometimes
she focuses with her right eye, sometimes with her left. But both eyes
work fine, and her brain has learned to process what she sees very
effectively this way. So the only reason to fix her eyes surgically
would be for cosmetic purposes. And it's not bothering me, so we'll
leave her gorgeous eyes as they are.<br />
<br />
Besides, the cross-eyed look is always a great indication that she is getting tired.<br />
<br />
The glasses are another story. Right now, her eyeglasses are somewhere
in the back yard. Maybe. Or maybe not. Last winter they were "Outside.
In Snow." Recently they were broken in half. Often they are flung across
the room. Sofia does not particularly care for wearing eyeglasses.<br />
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<h3>
October 7: 31 for 21: “How can you do this to the boys?”</h3>
That was
probably the most poignant question I heard when we first got our amnio
results. Spoken by someone who loves my boys dearly, it was meant as:
How could you have a child whom you know will have special needs? How
could you take your attention away from them? How could you make them
have to put up with a sibling with special needs?<br />
<br />
I’m pleased to say that the person who asked this changed their tune - radically. Just a few <span class="text_exposed_show">years after Sofia was born, this person said, “Having her was the BEST thing you could have done for these boys.” And it was.</span><br />
<div class="text_exposed_show">
<br />
Dr. Brian Skotko, co-director of the DS program at Children’s Hospital
in Boston, has done plenty of research on siblings of people with DS.
Among other things, he and his partners interviewed hundreds of
siblings.<br />
- 96% had affection towards their sibling with Down syndrome;<br /> - 94% were proud of their brother or sister with Down syndrome; and,<br /> - 88% felt they were better people because of their sibling with Down syndrome.<br />
<br />
Yes, Sofia takes a lot of my attention; she also takes a lot of the boys’ attention (and David’s).<br />
But research also shows that siblings of people with special needs also tend to develop more:<br />
- patience<br /> - kindness and supportiveness<br /> - acceptance of differences<br /> - compassion and helpfulness<br /> - empathy for others and insight into coping with challenges<br /> - dependability and loyalty that may come from standing up for their brother or sister.<br />
<br />
They frequently go into fields that involve supporting others.<br />
<br />
What I see in my boys:<br />
<br />
An exceptional amount of patience, both for Sofia and for others. They
help Sofia in ways most siblings never have the chance to try. From the
moment Sofia began to talk, Micah was her self-appointed speech teacher.
He would coach her on pronunciation, encourage her to produce more
words. His patience with her is incredible. He is also her biggest
cheerleader, and partner in crime. <br />
At the beginning of the
school year, Sofia was afraid to climb to the top of the new playground
structure at MWJDS. One afternoon, Micah coached her and coacher her,
until she made it to the top. She was SO excited! He just kept cheering
her on.<br />
<br />
Sam, on the other hand, is the Handsome Prince. As a
teenager, and with 5 years between them, he has less to do with her on a
daily basis, and he often is distracted. But she ADORES him. Sam is
Eugene (the prince from “Tangled”) , while poor Micah is “Max the Horse”
(granted, a very responsible horse, indeed).<br />
<br />
Having the chance
to be Sofia’s brother has been terrific for Sam and Micah. I am proud of
the kind, caring young men they are becoming. And there’s no way Sofia
would have made such huge strides without her brothers’ goading.<br />
<br />
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<h3>
October 8: Flexibility (physical)</h3>
People with Down syndrome
often have hypotonia (low muscle tone; the amount of tension or
resistance to stretch in a muscle), and/or ligaments that are too loose
(ligament laxity).<br />
<br />
Sofia’s muscle tone is fair. She is strong -
very strong - but she tires easily. Try kneeling and keeping your body
straight for a few minutes. Think about all the muscles you use to stay
in that seemingly simple position. For Sofia, that position is WAY more
work.<br />
<div class="text_exposed_show">
<br />
But with the loose ligaments
comes some amazing flexibility. As a baby, if she was put into a
sitting position but wanted to be flat on her tummy, she would simply
put her tummy on the floor, and whip her legs back out flat - not a
“normal” way to move! Just this afternoon, she was trying to block my
way, so she stood in the hallway, put her arms out to the walls (it’s a
narrow corridor) and then put her foot on the wall - about 2” above her
head!<br />
<br />
Before Sofia, I’d never seen someone watch TV with their feet behind their head.<br />
<br />
In ballet, when they stretch the head back, Sofia has no problem
touching her toes to her head. When she feels like it, she can slide
into a perfect split without even trying.<br />
<br />
And, of course, this is one of her favorite positions for tapping in the car:<br />
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-34331049231126275682014-10-04T22:21:00.002-04:002014-10-04T22:21:47.181-04:00Down Syndrome Awareness MonthOctober is Down Syndrome Awareness Month, and we in the blog-sphere try to do "31 for 21". I've been posting on Facebook, but I'll try to put them here, also. So, to catch up, here are my first four posts:<br />
<br />
<br />
<h3>
October 1</h3>
<div class="_5pbx userContent" data-ft="{"tn":"K"}">
October
is Down Syndrome Awareness Month. We were SO ready for Sofia to be born
with that extra chromosome! Apparently it is possible to be TOO early
for Early Intervention - when I showed up 5 months pregnant, they
suggested I come back when I actually had a baby! The social workers in
the hospital laughed because they had never sent home a child with DS to
such a prepared family. <br />
Nowadays, she still makes us all laugh!<br />
<div class="separator" style="clear: both; text-align: center;">
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</div>
<h3>
October 2</h3>
<div class="_5pbx userContent" data-ft="{"tn":"K"}">
31
for 21: Down syndrome is a genetic disorder caused when abnormal cell
division results in extra genetic material from chromosome pair 21. This
extra piece of material is called a Trisomy, in this case Trisomy 21
(an extra piece on the 21st pair). This genetic disorder, which varies
in severity, causes lifelong intellectual disability and developmental
delays, and in some people it causes health problems. Down syndrome is
the most common genetic chromosomal disorder and cause of learning
disabilities in children. It was named for Dr. John Langdon Down, the
Cornish physician who first described the condition.<br />
Since
October is Down Syndrome Awareness Month, and since October has 31 days,
and since Down syndrome is also called Trisomy 21, I will be attempting
to do 31 posts, one per day, in honor of Down syndrome. 31 for 21. Get
it?<br />
<br />
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<h3>
October 3</h3>
31 for 21: We first knew Sofia might have an extra chromosome when my
early blood-work came back with indications. Ultrasound also suggested
some factors for DS - specifically a shorter-then-average femur and an
echogenic focus, a small bright spot seen in the baby’s heart on an
ultrasound exam, which may mean small deposits of minerals or calcium.
My brother-in-law, a peri-natologist, saw the same factors on
ultrasound, but said that the baby was in perfect position for an a<span class="text_exposed_show">mnio.
So we went ahead with the amnio, just to be positive. Babies with Down
syndrome are at higher risk for being born with heart defects or other
health issues, and I wanted to make sure we had the correct care lined
up for her.</span><br />
<div class="text_exposed_show">
So we shifted
our care into Boston, and had three fetal echocardiograms before she was
born. It was clear she had some minor heart issues.<br />
But
fortunately, her cardiac issues have indeed been minor. She had an echo
just a few hours after she was born, and then we followed up with many
others, but she has never needed treatment for her heart. This past
summer's checkup was excellent. The doctor wants to do one more echo, in
a few years (she's not the most cooperative right now when it comes to
the EKG, and the last time she had an echo, she had to be sedated). But
we think most of her heart holes have closed up nicely. We are so lucky!<br />
<br />
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<br />
<br />
<h3>
October 4</h3>
31 for 21: If you saw me today at shul, you might have noticed that I
was more frazzled than usual. Sofia was having "A Day". That extra
chromosome often comes with what is sometimes called "Stubbornness" and
sometimes called "Determination". She was extra-determined today, to go
inside the school wing rather than into the service in the tent (we ahve
a giant tent which seats 400 for services, while the sanctuary and
social hall seat 900). She was extra-determined to go to th<span class="text_exposed_show">e
pre-school wing rather than the religious school wing. She was
extra-determined to do whatever the hell she felt like in Rav Shira's
service (for grades K-1) rather than whatever Rav Shira had planned
(although she totally surprised me by quickly calling out the answer
when Rav Shira asked "What does 'Sh'ma' mean" - "HEAR!")</span><br />
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That extra stubbornness/determination certainly gets Sofia a long way
in life, but sometimes it is just plain exhausting to go up against.
Especially on a day when I am fasting (for Yom Kippur) and have not had
any coffee. <br />
I took a little break (thank you, <a class="profileLink" data-hovercard="/ajax/hovercard/user.php?id=502012441" href="https://www.facebook.com/laura.rothkopf.3">Laura Rothkopf</a>
for watching her) and took a walk around the parking lot with another
Special Needs mom, who has a grown daughter with cognitive issues. It
was nice to be with someone who could totally relate to how I felt, and
who had some good words about those loosing battles we sometime face
with our kids. "Let It Go" - sometimes I need to be reminded of that.<br />
Later, David asked me if Sofia had been bothering other people. I was
really not at all aware of how other people were seeing her. I just know
she was bothering ME. And not behaving the way I wanted her to behave.
And not allowing ME to do what I wanted to do (I never even made it in
to adult services this morning). So was it only MY problem? And does it
matter?<br />
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-36593281151046280162014-10-04T22:17:00.001-04:002014-10-04T22:17:13.823-04:00October already!Really, I have not posted since July?!!!<br />
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Ok, quick summer update:<br />
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- Sofia had a blast during her 5 weeks at Camp Arrowhead, the special needs daycamp in Natick. Every camper gets a one-on-one volunteer. Each week there was a different theme party day. Third week was "Prom". Sofia went gaga over the handsome director in his tux. After that, her volunteers were always male ;)<br />
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- Micah had The Best Month Of His Life at Camp Ramah. He was so sad to come home! Especially since Sam stayed for the full summer. Next year they will both be there full summer (and I'll just bring the hair clippers with me on Visiting Day, instead of waiting forever at the only hair place in Palmer that is open on Sundays). But we kept him busy: the week after camp, David took him to NYC for a few days. The following week he spent most of the time doing homework (a research project he needed to do in order to <br />
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officially skip a grade). Then we had a week's visit from his friend E from Florida (E's mom is one of my oldest friends; we met at our very first USY event). Then we spent a week on the Cape, and took along another best buddy (also named E).<br />
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- Sam came home for a grand total of three days. He spent nearly all of that time in his room, cramming two summer reading books, which he could only access through his assistive technology program. Then David took the two boys to a Yankees game in NY with Grandpa Orson, and then Sam went <b>back</b> to camp for another Shabbat, this time for USY Encampment. <br />
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And then we were back to school! 10th grade, 8th grade, and 3rd grade!<br />
<br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-20269985940187065992014-07-14T13:28:00.000-04:002014-07-14T13:28:19.304-04:00DS Convention, and Inspiration PornSofia and I attended the National Down Syndrome Congress convention this past weekend, in Indianapolis. It was a nice to get away with my beautiful daughter (even though she was in a crabby mood some of the time). It was nice to see on-line friends in person. It was nice to see other 9 year old girls with Down syndrome exhibit many of the exact same behaviors as Miss Sofia. It was nice to learn some tricks and tips about managing challenging behaviors or how to teach her about puberty.<br />
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There were a few less-nice things, though.<br />
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<b>1. Sofia is just not all that social. </b>This one took me a bit by surprise. But only a bit. On Friday, we went to lunch with friends. We had seen Amy and her daughter Emma this past summer, and I had been talking to Sofia about how excited we were. Emma was also excited to see Sofia. And we have not seen Michelle and her daughter Kayla since the Boston convention 5 years ago.<br />
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Sofia was not "into" seeing friends. We got together for a photo:<br />
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And you can see that Sofia was not going to cooperate.<br />
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She fared a little better with Kayla's brother, Lucas (who is really cute and difficult to ignore):<br />
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So we walked to lunch, on a hot day, on the wide, flat sidewalks of Indianapolis (it sort of reminded me of Washington DC). Sofia kept stopping, and eventually I had to carry her (making a mental note to ALWAYS bring the wheelchair!). She and Lucas did stop to pick dandelions (he was very sweet, handing her flowers).</div>
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We made it to our restaurant, which was very crowded, so we decided to order take-out and have a picnic (there was a nice park with tables out back). While we were waiting for the food, Sofia cooled off on the floor while Emma and Kayla chatted:</div>
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But it was nice to eat lunch with friends (and at least she did stay at the kids' table for a while):<br />
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The kids ran around while the adults finished up, and then we got a group photo:<br />
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<i>Left-to-Right: Kayla, Emma, Amy P, Michelle, Lucas, me, Peggy, Cason, and Miss Grumpy-Pants</i><br />
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So much for that. She did perk up a bit after lunch, and we stopped into the Exhibit Hall to play a spot of tennis:<br />
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Mostly, however, she just wanted to check out the race cars. This being Indianapolis, there were several cool cars sitting around:<br />
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She did ok at Kids Camp, although she discarded her eyeglasses (fortunately, they had them at the check-in table), and she was hiding behind a curtain, watching traffic on the street when I came to get her.<br />
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The hotel was all-glass, and our room was on the 31st floor, with stunning views:<br />
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What Sofia really preferred to do, of course, was stay in the room, watch TV and play with her hair/makeup toys.<br />
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Friday night she and I walked (ok, I wheeled, she rode) to dinner. David had suggested a restaurant but it was really expensive (he had been there, but for work, so he hadn't paid). Sofia and I settled for The Old Spaghetti Factory, which we'd gone to in Vancouver. Very simple, with gluten-free options, and yummy drink for mommy, and $30 including tip.<br />
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We came back, changed, and tried to go to the Dance. We got to the convention floor, walked in the door of the dance. Walked directly through the crowd to the other side of the room. Briefly got to see Amy and Emma. And then went to bed. (Ok, got Mommy a drink first). Sigh.<br />
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Of course, she woke up at 6:30 am every single morning. Despite the black-out curtains. First stop was the pool, which she had all to herself on Saturday. Then we got dressed and left the hotel to go for a walk.<br />
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Outside the first stop, we met up with another mom who was walking with her 12 year old son and a friend's 9 year old son. The 9 year old was tired and Sofia was peppy, so we gave him a ride. But when it came picture time, Sofia again would not join in:<br />
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And so we eventually said goodbye (and retrieved our wheelchair).<br />
Sofia likes to be alone:<br />
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We walked to the Zoo, which would have been better if it wasn't 98% humidity. We did not stay too long. Walked back, and Mommy had a melt-down finding lunch, until we finally went back to the room and I called in a take-out order from the lobby restaurant.<br />
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<b>2. Inspiration Porn and Militant Inclusion:</b> While I was waiting for Sofia to finish lunch, I watched this excellent <a href="http://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much" target="_blank">TedTalk by Stella Young</a>. In it, she talks about Inspiration Porn. Porn is when you objectify another person so that you can feel good. She discusses the phrase "The only disability is a bad attitude" and points out that no amount of positive thinking is going to turn that staircase into a ramp or make closed caption magically appear on the TV.<br />
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So after Sofia finished lunch, I checked her into the Kids Camp again and I went to the General Session. First there was a militant Inclusion lady. (I'm not Militant Inclusion, especially when it comes to education. Sofia did really poorly in an Inclusion Class with 20 kids, a dozen of whom had their own learning differences. She does great in the Sub-Separate classroom; she still is attached to the Inclusion class for Art, Music, Gym and lunch, but gets her learning in small group or one-on-one, which works perfectly for her.)<br />
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So I was already kind of uncomfortable. Then, after the Inclusion lady, they showed an "Inspiring" video about a fellow with DS who is some sort of assistant coach for a football team. And, honest to gosh, someone in the video actually said, "The only disability is a bad attitude"!<br />
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As I was leaving, the football player who came on-stage to introduce the speaker started quoting John (from the New Testament), so I knew I was done. (And I did not feel particularly Included!).<br />
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<b>3. Puberty is Gonna Happen</b>: Ok, this session (how to explain and manage puberty to girls with DS) was worth the trip. I sat with Michelle and we took lots of notes about this terrifying topic. It figures, our kids are delayed in EVERYTHING... except Puberty.<br />
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When the session ended, I picked up Sofia (who had a better time in Camp this time), and we went up to the Concierge Lounge on our floor for hummus and chips and some wine for mama. We went back to the room to relax before dinner. And then we went down to the banquet.<br />
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<b>4. You can't get a kosher meal in Indiana</b>. When I signed up for the Conference, I had to pay a Conference Fee, fees for each session of Kids Camp, a fee for the Compendium (which I got in electronic form), and fees for each meal at the Saturday Evening Awards Banquet. When signing up for the banquet, there were many options: Adult, Child, Vegetarian, Gluten Free, Kosher. Yes, Kosher, for Adult and for Child. So I signed up.<br />
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We got into the banquet about 7:10, and it was already full. We waited with a nice family from Long Island and a mother and two kids from New Mexico until they could open another table for us (there were several Reserved tables that were still empty). We put our meal tickets on the table. We told the wait staff what our meal orders were (the LI family had ordered some vegetarian meals). And we waited.<br />
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I must have told the waitress 7 times "KOSHER meals". At 8:00, she took the tickets off the table and brought them into the kitchen, then came back and said "They are going to make those now." At 7:15, the manager came over and said "we've run out of kosher meals. The chef wants to know if he can make you a kosher-style meal." NO.<br />
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So we ended up with vegetarian, and since I didn't trust that they had also made Sofia's gluten free, I got the kids' meal of pasta (I could not tell if it was GF or not) and she got the adult meal of veggies and beans. But it was already 8:30 and she was ready for bed.<br />
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So we left, before the dance even began. Sigh.<br />
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But I am glad I went. Glad to meet new friends and see old friends. And glad to be home :)<br />
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<br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com2tag:blogger.com,1999:blog-7926293667751454256.post-25984488482361200872014-06-16T13:45:00.002-04:002014-06-16T13:45:55.467-04:00To Break, To Train, or To GuideI started this reflection a few weeks ago, and finally have some time to get back to it...<br /><br />My daughter is strong willed. Very strong willed. She has Down syndrome, and people with that extra 21st chromosome are often known for their stubbornness. But Sofia takes it to new heights. A family history of OCD (my side), inflexibility (dad’s side) and all-out strong personality (both sides) have given her extra strength.<br /><br />She also has a habit of totally ignoring people. Unfortunately, this often extends to her father or my mother or my sister. When these supposed-to-be authority figures tell her to do (or not do) something, she is more likely to completely ignore them than to obey.<br /><br />I’m mom. I’m with her more than anyone else, and I know how to get her to do things. I know how to be patient, because she’s not going to just jump up and comply. She has to go through her own rituals in order to get out of the bathtub, or turn off the TV, or clean up her toys. She has her own unique, individual style. And I know when to pick my battles, when to turn on the stern voice, when to cajole, when to let her know I’m getting angry, when to let her know it’s a safety issue.<br /><br />As you may imagine, this causes some tension in the family.<br /><br />My mother tells me “You have to BREAK her of this!” as if Sofia is a horse. “You have to let her know who’s in charge.” While I may joke that Sofia knows that she is in charge, I really do not think this is a valid argument.<br />
<br />In fact, whenever I’m told I have to “BREAK” my daughter, I just want to scream, “WHY? She’s already perfect! Why would I want to break her?”<br /><br />
“We’ve lost the opportunity to train her,” my husband complains. <br /><br />
Train her? Like a dog?<br /><br />
What I want for my daughter is channel her energy. Get her to understand that things go in a specific order. “First do your homework. Then climb the rock wall.” Help her see that it really IS time to get out of the bath. Even if she is angry about it. She has every right to BE angry, but being angry doesn’t get her out of doing things.<br /><br />All three of my children are Unique. Special. Individual.<br /><br />I never want to “Break” them. I want to help them learn how to use their own unique and individual styles to move through the world. Help them learn how to communicate their needs. How to advocate for themselves. How to navigate social interactions. How to BE.<br />Not so much to ask, huh?<br /><br />------<br /><br />Ok, in other news, since I have not updated this thing in ages:<br /><br />It’s nearly the end of the school year! Micah is actually finished with 7th grade; the last day of school was Friday and they are on a field trip today. He made such giant strides once we moved him from 6th grade to 7th grade mid-year. He really completed all the work, and brought his level of quality, especially his writing, way up. He’s a kid who rises to a challenge. <br /><br />He had a great time participating in “Shrek The Musical” with the Framingham Performing Arts Center (PAC). He’s VERY popular with girls. He has an official girlfriend, but is frequently surrounded by other girls, especially on the Bar Mitzvah circuit. I probably should change his name to Valentino...<br /><br />I’m going to miss him when he goes to camp this summer, but I know he’ll love it. And we were thrilled to find out this weekend that one of his bunk counselors is a kid from our shul, so he’ll have someone he knows right there with him.<br /><br />Sam is nearly done with freshman year of high school. He’s in Exam Week now, and has completed two out of four exams. He’s looking forward to spending the entire summer at camp (Micah’s only going first session), and then wants to return to camp the day after he gets home so he can do the entire week of USY encampment also. Not sure about that.<br /><br />He’s made his way in high school. David and I still have to constantly remind ourselves that Sam is an Introvert and we are Extroverts and That’s Ok. It’s tough! But Sam did love playing on the Ultimate Frisbee team for school, and made friends with a handful of other kids, too (including the son of one of David’s college friends!).<br /><br />Miss Sofia is about to finish second grade. This is a big transition time for her. Last Thursday was her very last day as a student at MWJDS. There’s no way her split schedule would work with the rigors of third grade (especially since the Judaics become more text-based and she’s just a beginning reader). So now I have to figure out what to do about her Jewish education. I’m trying to figure out how to convince Gateways to do a satellite program in Metrowest, since I cannot bring her to Newton every week. If they don’t do it, I guess it’ll be up to me. Fortunately, I know lots of good people out here who could be involved.<br /><br />She’s also moving up to a different school next year (Ashland groups all students K-1-2, then 3-4-5, then middle school, then high school, into different campuses). I think I’m more nervous about the transition than she is. She’s been at the Warren School for 6.5 years, since she turned 3, because the preschool was there, too. It’s going to be interesting.<br /><br />She started taking the special needs Van to and from school a few days each week. Next year she’ll take it home, and take it to school only on the days when I don’t work at MWJDS (which might mean one day a week).<br /><br />I’m going to be the Marking Associate next year at MWJDS. Cool. I really love working there!<br /><br />Oh, AND I’m going to be one of the Gala Honorees! December 14. Cool!<br /><br />David has been traveling less, but still off and on. He’s trying to be more involved in the kids’ lives, which is good. We are looking forward to spending time together this summer, especially since the boys will both be away ;)<br /><br />Trying to start planning Micah’s Bar Mitzvah, and getting the front porch expanded, and might need a new refrigerator, since ours is leaking (David tried to fix it, but it’s still leaking). And I need another tire on my crappy minivan - tires should really last more than a year, right?<br /><br />Enjoying the sunshine today. FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-73445049198317195232014-05-26T21:19:00.000-04:002014-05-26T21:19:14.698-04:00Micah's "Save the Date" card<div class="sflyProductPreviewWidget" style="height: 494px; width: 425px;">
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FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-54350110362464820702014-05-19T18:10:00.000-04:002014-05-19T18:10:07.667-04:00Pollen TsunamiYes, it's finally Spring in the Northeast, which means No One Can Breathe!<br />
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Between myself, Micah and Sofia, we've gone through so much Benadryl, Zyrtec and Claritin, it's just not funny. Add to that a couple of nasty viruses that are also floating around, and my extreme talent for getting an ear infection and/or sinus infection any time I get too stuffy.... well, it's just not been fun.<br />
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But in other topics:<br />
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The final Consecration experience was lovely. Sofia did fine. She sat in my lap a bit, and in her seat most of the time. She shouted out "Shabbat" at the correct moment. And she offered her opinion when the Rabbi read the kids a story. IT was sweet.<br />
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I also took her to the model Matzah Factory before Passover, and she had lots of fun:<br />
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The public school 2nd graders presented their MultiCultural Night, and Sofia's class did a dance from Italy. La Principessas was front-and-center! She did great with all the dances.<br />
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Passover was fun. The first night was a bit dysfunctional, but still fun - an odd mix of people, so two very different styles. Second night was great. David finally offered to run the seder, so Laura and I could concentrate on the food! Only took 15 years!<br />
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Oh, and an hour before the first seder, I managed to completely slice my finger, through the nail. I even passed out from the pain (it hit the nerve). Wow. I guess my Passover knives are a lot sharper than my every day knives. My finger is healing, slowly. The wound is closed up, and the broken part of the nail has finally fallen off, anot not really any pain now. Just waiting for it to grow back.<br />
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Lilie stayed with us for the first week of Passover. It was a miracle: Sofia actually stayed in her own bed all night, because Lilie was with her. (Of course, Lilie came to snuggle with me around 3am each morning...)<br />
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Over April vacation, Sofia attended bike camp through the I Can Shine organization. Every morning we drove up to Arlington, and she circled the middle school gym, flanked by her volunteers. Biggest problem is that she does not want to go fast, which you need to do to balance on two wheels. But she worked hard.<br />
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Meanwhile, Micah and the 7th graders went to NYC for three days right after Passover. He had a BLAST! He's doing so well in 7th grade. He's so happy. And he's loving being in the play ("Shrek the Musical" through the Framingham Performing Arts Center). Making friends and enjoying himself.<br />
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It's Ultimate Frisbee season, so Sam's keeping busy. David was home most of April, but now is back to traveling. Just weekdays, though. He's making a real effort to be home on weekends.<br />
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I'm jamming to get the MWJDS yearbook done this week, and finish making my Dragon Wings for Shrek. (That's my contribution to the play). And keeping everyone minimally healthy. Or well-benadryled.<br />
<br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-86294997541891805632014-04-09T15:41:00.001-04:002014-04-09T15:41:29.168-04:00First do homework, then climb the wallsIt's one of those "mommy" phrases you never expect to hear yourself saying. And yet you say it. And it works!<br />
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Sofia gets homework packets from the sub-sep teacher each week. And each week, Sofia and I argue about doing her homework. At the end of each week, I stack yet another un-touched homework packet on the counter.<br />
<br />The problem is that Home is for rest and relaxation. She is completely uninterested in doing more school work when she is home. And if she is uninterested, she is simply NOT going to do it.<br />
<br />So I decided we needed to find an out-of-the-house place that would be The Homework Place.<br />
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Well, Tuesday afternoons, Micah meets with the Cantor for Bar Mitzvah lesson ('cause of course he did not want to work with me!). And now that Sam has Ultimate Frisbee practice every afternoon, I couldn't just leave Sofia home with him. So she comes with me.<br />
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Of course, she still did not want to do her homework. What she wanted to do was this:<br />
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Our synagogue has a lot of decoratively uneven brick walls, especially in the lobby and behind the sanctuary. They are so inviting for my spider-monkey children!<br />
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And thus, I uttered those immortal words: "First finish your homework, then you can climb the walls."<br />
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She was SO happy. And when she finished, Micah showed her how it's done:<br />
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----<br />
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In other news, we had a WILDLY successful end to the Consecration drama. I was so upset after that first rehearsal, and I decided that it really just was not fair to make her do it. So I did not bring her to the Sunday rehearsal, and I sent an email to the Rabbi, Cantor, and the parents who were organizing.<br />
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Wedensday afternoon, a few hours before the last rehearsal, I got a call from one of the moms. It was the BEST phone call I've ever gotten about my daughter.<br />
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"Sofia has to participate! She should do just as much as she wants to, and then she can sit down wherever she wants to. She has to be there, she still gets her siddur and certificate."<br />
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(I had not known the children were all getting their prayerbooks, including the day school kids. No one ever mentioned that to me.)<br />
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So I brought her to rehearsal again after swimming. In the car, I told her she should try, and if she wanted to sit, she could. She told me she would "Just Sit, Listening Ears, Be Quiet."<br />
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Well, when we arrived, the kids were practicing, and she RAN straight to her place in line (between two friends), and she stayed up for the entire time they went through the prayers. She even answered when she was supposed to say her name and what she was thankful for (I came behind her to cue her). Then she sat down and watched the rest of the program, quietly.<br />
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I was SO proud of her!<br />
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She did slightly less better the morning of the event, but she was still fabulous. That girl just knocks me out!<br />
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----<br />
<br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0tag:blogger.com,1999:blog-7926293667751454256.post-58117850165855914012014-03-19T19:50:00.001-04:002014-03-19T19:50:19.196-04:00321 A Day In The LifeFriday, March 21, is World Down Syndrome Day. I'm ambivalent about "celebrating" it. As a few other moms have said, I want Sofia to be appreciated as An Individual, not just as a person with an extra chromosome. Not because of the DS. Just because of her. We jump through hoops trying to break down stereotypes: "Oh, all people with Down syndrome are just so sweet." "They are all so friendly." "Such happy, special people."<br />
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Uh, no. Happy, not always. Friendly, only when she feels like it. Sweet, not when she's screaming at her brother because she's "ANGRY YOU!"<br />
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But as part of a <a href="http://www.downsyndromeblogs.org/321-a-day-in-the-life/" target="_blank">3-21 A Day In The Life Blog Hop by Downsyndromeblogs.org</a>, here's my Day In The Life of Sofia:<br />
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Somewhere between 12:30 am and 3:30 am: there is a bump, followed by the sound of Sofia's door being opened. Shuffle, shuffle, shuffle. And suddenly there is a 62lb child climbing into my bed. Which is just barely ok when my husband is traveling, and mostly horrible when he's home.<br />
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If David is home, the next several hours are punctuated by his moaning and complaining while Sofia does her best to kick him in every rib and sensitive area she can reach, in the hopes that he'll just get up and move. He says some nights he brings her back to her room several times. I'm a deep sleeper. If I do manage to wake up, I bring her to her room, and have to stay with her until she's so deeply asleep that she won't hear me get up and leave; usually I'm asleep way before that point.<br />
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6am: my alarm goes off to wake up Sam so he can catch the school bus for the high school. Hopefully he remembers to wake me up before he leaves. If he can find me; I'm either in Sofia's room, or buried under her, since she likes to use me as a pillow whenever possible.<br />
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I get up, shower, and then have to get Sofia and Micah ready for school. Micah wakes up fine. Sofia often has to be dragged out of bed these days. Especially if it's my bed. (I don't get it. She has the newer, more comfortable mattress. I'd totally choose her room over mine!). Then comes the routine: get dressed, brush hair, find glasses. We go downstairs and I make her a pack of instant Grits (every single day of the year - except Passover - no matter where in the world we are); she makes sure I don't forget to add the butter. After the grits, usually there's bowl of cereal. Meanwhile, I make breakfast for myself and lunch for both kids.<br />
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Finally, get shoes and socks and coat, grab backpacks. Get to the car. Wait for Micah to get to the car, because there's usually something he forgot to get or to do...<br />
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Off we go, racing backwards down our very steep driveway in my minivan. Thrill Ride for the Day.<br />
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Sofia's school this year is just around the corner, and in the early morning, we are even allowed to drive in using the bus path in the back. Park, and walk her in to Extended Day Program. Pick up her coat and backpack along the way, since she takes them off and drops them in the hallway the instant she gets into the building. Report to the EDP teacher about how many helpings of breakfast she's had; sometimes she's still hungry.<br />
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Sofia is in the Sub-Separate classroom this year. She's attached to an Inclusion classroom, so I don't really know what the schedule looks like each day. Sometimes she's with the Inclusion class, mostly for Art, Music, PE and Lunch, and mostly she's in SubSep.<br />
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Mondays and Thursdays, I pick her up before lunch, and take her over to the Jewish Day School, where she joins the 2nd grade class. The other three days, I pick her up at the end of the day, a few minutes before the rest of the school gets out; the SubSep kids are dismissed from the front door, since many are on the special van bus, while the rest of the kids are dismissed from the side door.<br />
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Afternoons are a mixed bag. Mondays, she stays in Aftercare at the day school, although sometimes she escapes and finds me in my office. Then we leave and race over to her gymnastics class. Tuesday she goes home. Wednesday and Thursday she has swimming; I take her Wednesday (she won't let me into the dressing room to help her get into the swimsuit anymore!), and the babysitter picks her up from aftercare at the day school on Thursday. Friday she did have dance class, but we just quit; she hated Tap and would not cooperate.<br />
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Then we drive whichever boy needs to be driven somewhere, and then go home. She watches a movie (usually on Netflix - Tinkerbell or Barbie are the current favorites) while I make dinner. There are "beauty" toys (hair and makeup) spread out all over the floor, and most of the time she brushes her Rapunzel doll's hair while watching her movies. More watching after dinner (unless David is home and says "no TV").<br />
<br />
Maybe a bath (she showers after swimming, so not on those nights), brush teeth, pajamas, and bed. If it's not too late, I try to make her read a book to me, or I read to her. Mostly she likes to look at the pictures and argue with me.<br />
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She's very independent these days, and sometimes kicks me out of her room, but just as often insists that I stay. I try to leave before she falls asleep.<br />
<br />
What's missing from this schedule?<br />
<br />
Playdates.<br />
<br />
Any kind of playdates.<br />
<br />
Any getting together with Friends.<br />
<br />
Ever. (Ok, not EVER. In the late spring and early autumn, we spend more time outside, and her friend from across the street might stop by on the way from walking their dog, and the two girls will play together for about 20 minutes. It has not been warm enough to do that in many months.) <br />
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It kind of sucks.<br />
<br />
I don't mean to be depressing. Usually I'm completely in awe of and enthralled by La Principessa.<br />
<br />
But sometimes I wish ....<br />
<br />
Ugh. I can't believe I even said that to myself.<br />
<br />
I wish she was more "normal." But I don't, really. I just wish she had playdates. I wish she got to be included more. I wish she was invited to some birthday parties from the public school (and I very much appreciate that she is invited to all the parties from the day school). I wish other kids HER AGE (or grade, really, since she's 9 already) would engage her in conversation.<br />
<br />
It was very sweet today. This past weekend, at the Purim festivities at shul, Sofia made a new friend, also named Sofia. Also in 2nd grade, although a few years younger (and much taller!) than my daughter. Well, this afternoon, we went to shul (to practice for Consecration; it went horribly, since Sofia was totally uninterested in participating), and the new Sofia held out her arms to give my daughter a huge hug. THAT was wonderful.<br />
<br />
I wish more kids would do that. Her day school friends often do; not all of them, but some of them. The rest just treat her like any other kid, which is great. But she's only there 4 hours a week. The rest of the time, I don't get to see her with friends.<br />
<br />
I'm just grumpy. I hear her upstairs as I type this. She's watching something, and laughing hysterically (and adorably). She's "really very happy" - right now.<br />
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<br />
<br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com1tag:blogger.com,1999:blog-7926293667751454256.post-56924400242913247922014-02-24T22:46:00.001-05:002014-02-24T22:46:18.985-05:00February Vacation - Guadaloupe!I am relaxed.<br />
<br />
RELAXED.<br />
<br />
Like the "can we just cement this feeling into my body" type of relaxed I have not felt in a long time.<br />
<br />
A week doing nothing more than following Sofia from pool to shore to restaurant, occasionally talking to the boys and David, and reading and sleeping, is apparently really good for me.<br />
<br />
We left on Friday afternoon, right after school, for Logan Airport. Flight to Miami.<br />
<br />
I hate Miami Airport. It's huge, it's badly marked, people are not nice, and it's overcrowded. And poorly planned. And slow.<br />
<br />
But eventually we made it to the hotel for the first night, and then back to the same airport in the morning for our flight to Guadeloupe, in the Caribbean.<br />
<br />
Sofia spent most of the flights watching movies on my Color Nook (the one that was Grandma's), because her movie player died after about 20 minutes. Time to get a new one. Bummer. But at least I'd thought ahead and put some of her movies on the Nook, along with my own stuff.<br />
<br />
She also went to the restroom about 6 times, vaulting off each and every row of seats on the way down and back each time.<br />
<br />
Otherwise, the flights were fine. Micah sat next to Sofia on the first flight, which was helpful. Sam sat there the second flight, which was not helpful.<br />
<br />
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Arrived in <span dir="auto">Pointe-à-Pitre International Airport, and found the Club Med staff. And we were off for a week at Club Med La Caravalle.</span></div>
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<span dir="auto">It was a lovely week. We had two connecting rooms, so the three kids each had their own bed (pull-out for Micah), and in theory David and I had our own room (although Sofia shared our bathroom, and came in for cuddles each morning).</span></div>
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<span dir="auto">We didn't do much beyond swim and eat. I tried putting Sofia into the Mini Club one morning so I could go windsurfing (which I did, and loved), but she was not at all happy in the club, so that was the end of that. I had to take her to activities instead. </span></div>
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<span dir="auto">She tried the Trapeze (Club Med has a Circus School) - the first time, they carried her up the ladder and got her onto the bar and swinging before she even realized it, but the second time, she got a death-grip on the safety rope, and they ended up carrying her back down the ladder instead.</span></div>
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<span dir="auto">Micah got to do the trapeze once, and enjoyed it.</span></div>
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<span dir="auto">Sam did archery every afternoon, and had a lot of fun. He also tried windsurfing with me, and liked it.</span></div>
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<span dir="auto">David relaxed, too.</span></div>
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<span dir="auto">It was also Sofia's birthday on Tuesday, and they brought her a cake at dinner.</span></div>
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<span dir="auto">So here are some random photos covering the week:</span></div>
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<span dir="auto"><i>Sofia taking a selfie</i></span></div>
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<i>Sunset</i> <br />
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<i>Sofia stops to take some photos of a tree-top while David watches</i> <br />
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<i>Me and my love</i><br />
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<i>More sunset</i> <br />
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<i>Swimming with my little fishie</i> <br />
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<i>Sam and one of the friends he made dug a huge hole on the beach</i> <br />
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<i>Birthday Princess (I made the crown using the wrapping paper from the book I'd brought along for her)</i><br />
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<i>Sofia getting carried up the ladder for the trapeze</i> <br />
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<i>but not cooperating...</i><br />
<i><br /></i>
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<i>Micah did it, though.</i><br />
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<i>Sam the archer</i><br />
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<i>Friday night award ceremony, Sofia latched on to the GO in the suit. She followed him around like he was her prom date.</i><br />
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<i>Me and my girl</i><br />
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<i>My loves</i><br />
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<i>Snacking in the lounge - she loved the tuna</i><br />
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<i>The photographers were excellent, and WICKED EXPENSIVE! I was only able to buy 7 photos (for 112Euros, which is a small fortune). Still regret not taking a few more, but gee-whiz, they were a fortune.</i><br />
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<i>The boys went on a Kayak ride through the mangroves. </i><br />
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<i>Contemplating the sailboards</i><br />
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<i>Hanging out in the room...</i><br />
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<br />FBF Rothkopfhttp://www.blogger.com/profile/04870455838870007816noreply@blogger.com0