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.

https://www.youtube.com/watch?v=6OGDZU_Km4Y&feature=youtu.be

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.

Thursday, October 23, 2014

Oct. 20 - Princess?

First, an article, originally found here: http://www.huffingtonpost.com/suzie-skougard/a-disney-princess-with-down-syndrome_b_6006964.html

A Disney Princess with Down Syndrome. Could It Work?

  Posted: Updated:

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 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.

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?

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? 

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. 

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? 

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.


Now my own 31 for 21 Post in response:

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?

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.

Would having a princess with Down syndrome force Sofia to ONLY relate to that princess? Would it limit her imagination?

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.

18-20 DS Awareness Month

October 18

 Sofia found a friend to keep her amused during Sabrina's Bat Mitzvah.

October 19

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.
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.

 October 20: Sofia's Birth Story

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.

I spent the last few months of the pregnancy getting ready, and that 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!).

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.

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.

And then my water broke!

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!).

And then I laughingly "yelled" at the doctor for telling me I still had a few weeks to go.

Friday, October 17, 2014

31 for 21: October 16 & 17

October 16: Dancing Fool!

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.

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.

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.


October 17: Self-Talk

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!).

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."

(From “Self-Talk” in Adults with Down Syndrome, By Dennis McGuire, Ph.D., Brian A. Chicoine, M.D., and Elaine Greenbaum, Ph.D, 2005.)

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.

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

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.

"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."
(from the same article as quoted above).

 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?

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!

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.