Wednesday, August 15, 2018

Sofia'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.

Sofia's Bat Mitzvah!!!

Yes, my girl is 13, and has been working for a long time to prepare for her Bat Mitzvah.

Here are the details you need:

Friday, October 5, 2018: 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 Shabbat dinner immediately following services. Please email us at to RSVP for dinner.

Saturday, October 6, 2018: 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.

Saturday, October 6, 2018: The Party! 7:00 pm, Havdalah by 7:30 and then dinner and dancing!

Sunday, October 7, 2018: The MDSC Buddy Walk. Please join us as part of Sofia's Bat Mitzvah Team at the 22nd annual Mass Down Syndrome Congress Buddy Walk, around Lake Quannapowitt in Wakefield, MA. We will have a brunch spread on the green before the walk begins, too.

Hotel Information

We have reserved rooms at several hotels in the area (more links coming soon):

Courtyard by Marriott, 342 Speen St, Natick, MA: Rate for either 1 King or 2 Doubles should be $139 per night (plus tax).

Hampton Inn, 319 Speen St, Natick, MA . Rate for either 1 King or 2 Doubles should be $141 per night (plus tax); includes breakfast.

Crown Plaza Natick, 1360 Worcester St, Natick, MA 01760, 800-265-0339: They only have King bed rooms available; rate should be $159 per night (plus tax).

Monday, April 13, 2015

Pay It Forward

Dear friends,

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.

This past winter, Sofia was entered in a contest, to try to win a special adaptive bicycle. 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 First Congregational Church of Holliston (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.

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.

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.

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."

I would like very much to “pay it forward” and encourage my friends and family to help raise that money for her.

In Cantor Ken Richmond’s very moving speech before Yizkor, the Memorial Service on the last day of Passover, he spoke about the custom of giving tzedakah in memory of a loved one. Here is your opportunity.

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 mitzvah.

UPDATE: I guess it would help if I posted the link! Here is the fundraising site and here is the video.

Thursday, December 18, 2014

Been kinda busy!

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.

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.

Adam and Jenny slept over our house, so after we all went home, it was nice to visit a bit with them.

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.

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.

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.
Formal portrait on Thursday evening

Exhaustion after that, and clean-up. Now Micah is still working on Thank You notes - it'll take a while...

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.

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.

Gala photo with David's family (taken by my dad)

Here is the text of my speech:

Francine’s Remarks for 2014 Gala

Thank you, my friend, my mentor. The very beginning of Pirke Avot begins with teachers and Mentors:
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.
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.
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.”
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.
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.
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.
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.
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 call 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.
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 menches 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.
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!
Hazak Hazak v’Nit’hazek – Be strong and let us strengthen one another. Chazak u’va’ruch – Be strong and blessed.

Friday, October 31, 2014

Ending a month of Down Syndrome Awareness posts

October 28 - 31 for 21: That Gap next to the big toe

There are a bunch of common physical characteristics in people with Down syndrome. Some of the most common are:

- those beautiful slanted eyes
- a flat nasal bridge
- a single crease across the palm of the hand (transverse palmar crease)
- excessive space between big toe and second toe
- short stature
- low muscle tone
- excessive flexibility
- lower set ears
- Brushfield spots in the iris of the eye
- stabismus (crossed eyes)

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.

In her eyes, the beautiful Brushfield spots look like stars in the sky.

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.

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.

I look at Sofia, and at others with Down syndrome, and sometimes their beauty just takes my breath away.

October 29 - 31 for 21: Processing

I'm always fascinated with what Sofia notices and how she processes things.

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!
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.

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!

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."

(Oh, and we found an Elsa costume - poor Rapunzel has been tossed aside...)

October 30 - 31 for 21: Facts and Things about Down Syndrome

(mostly gathered from a pamphlet by the National Down Syndrome Congress)

- Down syndrome is a chromosome variation with no known cause

- It is not related to race, nationality, religion or socio-economic status

- in the US, approximately 1 in every 800 to 1000 children is born with DS

- About 80% of babies with DS are born to women UNDER age 35

- 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

- 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!

- The chance of having a child with Down syndrome increases with the mother's age

- The chance of having a SECOND baby with DS in a future pregnancy is only about 1%

- 95% of people with DS have an extra 21st chromosome in every cell in their body - Trisomy 21 (this is what Sofia has)

- 3% - 4% have an additional 21st chromosome attached to another chromosome. This is called Translocation Down syndrome

- 1% have an extra 21st chromosome in some cells but not in others - this is Mosaic Down syndrome

October 31 - 31 for 21: A Whole Month of Down Syndrome Awareness

Would I change anything?

I would not change Sofia. She is Sofia, in all her glory.

I would change society.

I would change how people - strangers - see my daughter. Because anyone who does know her knows how incredible she is.

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).

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.

I would change old fashioned or closed-minded opinions (oh, wait, I do that already!).

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.

I would change society's need for people to be The Same, and instead make sure we value Difference and Diversity.

I would change access to excellent health care, support services and educational assistance for anyone who needs it. Everywhere.

I would change the world.

I would NOT change Sofia.

I would not remove that extra chromosome from every cell of her body. It is part of her, and what makes her Sofia.

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.

Thank you for reading these 31 for 21 posts. It's been fun and challenging. And I'm REALLY glad it's over!

Monday, October 27, 2014

Oct. 24 - 27

October 24: Family

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.

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 picked 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.

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.

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.

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."

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.

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.

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.

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.

Happy Birthday, Grandma. I still miss you. And you still make me smile.

October 25: The Fashionista

This afternoon, we walked around the Mall. Rather, David and I followed Sofia around the mall. She shopped. Intensely.

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.

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.

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.

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.

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.

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?

October 26: Creativity

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.

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.

October 27:  Religion

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.

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?

Well, it's been good. Really good.

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.

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.

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.

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.

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.
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!

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.

Friday, October 24, 2014

31 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.

Children with Down syndrome are tested. Often. Continuously. By lots of people. By their parents. By teachers. By therapists. By just about everyone.

"Show us how you do this." "Let's hear you read that." "How high can you count?"

It's endless.

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.

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".

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.

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.

(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!)

31 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.

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.

In Real Life, or just via the Internet, we have shared so much.

We each of us love someone with Down syndrome.

We each of us know what it's like to parent (or grandparent) a child with that extra chromosome.

We have compared milestones, bragged, complained about medical and support services, compared notes on IEPs and birthday parties.

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.

Some of my Soul Sisters live nearby - Kathleen Horigan Dye, Kerri Daniels Tabasky, Debbie Ellenbogen. Some are spread across the country - Amy Parks Patterson, Michelle Beausoleil Helferich, Amy Strottman Flege, Rebecca Pho, Tara Marie Swanson Hintz, Melissa Middendorf Hart, Renee Toth, Renee Garcia. Some are in other countries - Adina Rabinowitz (and we have been so blessed to visit several times!). There are more - so many more.

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, Dori Cousley!).

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.

We hold our breath and pray during medical crisis.

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.

This is one of the secret perks of having a child with Down syndrome. This amazing Community. My Soul Sisters.

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.