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.


gps said...

Have you spoken with someone at