Saturday, March 30, 2013

Reflections on Down syndrome (again)

I took Sofia to her ballet/jazz class this morning, and spent most of the time watching the class (usually I read a book and hide). Today Sofia's belly hurts from too much Passover food, and she's been up really late most nights this week, so she was a bit "off". But it was sweet. For ballet warmups, she decided she was cold and needed to snuggle in the teacher's lap. She fit just perfectly, and Miss Paula was able to help her through every step.

The ballet class is technically for 5-6 year olds, but my darling 8 year old is only of medium height and just about the same attention span, so it's the perfect class fit for her. The other girls are adorable. When they line up to do practice steps across the room, usually there are 4 girls in each of two lines, and one in the middle. Today Sofia got the middle spot, which meant she got to practice 4 times as often as the other girls (which she certainly needs!).

The dance studio of course has mirrors on two walls, so that's a wee bit of a distraction. I had her hair up with a cute little pony tail on top, but she kept noticing it and pulling at it. Oh well. And the glasses came flying off only a minute or two into class.

Since she was not feeling great, she asked me to come in (usually parents watch through the window or from the TV), and then announced "Guys! This is Mom!" - full sentence, very clear. So sweet.

It was lovely to see my daughter be part of the class so well. They are practicing for the recital in May, and she's got about 3/4 of the dance down already. Sometimes she gets carried away by the arabesques, but eventually she catches up with the other girls. She's on the end, and the teaching assistant (who is WONDERFUL) stands just off to the side in front of her, so she's got extra support right near by.

Meanwhile, in between watching ballet, I was checking in on Facebook, and getting totally depressed. You may have heard about the tragic case of Robert Ethan Saylor. On January 12 he went to see a movie with his aide. After the movie the aide went off to get the car. Robert wanted to stay and see the movie again, and would not get out of his seat when the movie theater guard asked. So three off-duty police officers, moonlighting as mall security, were called, handcuffed Robert and threw him to the ground. He died of asphyxiation, calling for his Mom.

Here are a few articles and opinion pieces about his story:

The New York Times
Down Syndrome Uprising
Huffington Post
Kimchi Latkes blog

The Petition on Change.Org

And a really thorough list of "What YOU Can Do" on the Life As I Know It blog

The whole case is sad and sickening and terrifying. More so, because, well, I could EASILY see Sofia getting stubborn and belligerent when faced with authoritarian instructions. How easily? Too easily. Her father has a tendency to attempt to be authoritarian. It does not work well. And he's someone who knows and loves her. What happens when it's some stranger, someone who not only does not know and love her, but who looks at her and sees "different and therefore unworthy of consideration"?


We've come SO far. Twenty years ago, would she be in this ballet class? Would she be in "regular" swimming and gymnastics classes? Would she be included at the public school? Would she be learning at the day school?

Nope. Twenty years ago, I would have had to fight for absolutely every consideration she received. She would have been relegated to some token participation, at best, and more likely been left lonely and alone most of the time.

So I'm thrilled that we live when - and where - we do.

But what happens as she gets older? When she's not a cute little girl, who seems like a 5 year old, will she still be tolerated and considered "cute"? Or will she be marginalized, rejected, and treated meanly?

I hope the world continues to improve. Continues to recognize that ALL people are of value. We had several boys with Aspergers and Autism at our seders this week, and each of them brought something unique and important to our house. Themselves. Whether they were able to participate with help, or spent most of their time sitting on the couch reading a book, they were important to the make-up of our guest list. They were important to how my children learn to treat others. They ARE important.

And with the Robert Saylor case, I question the need for three sets of handcuffs on ANYONE - visible disability or not. That's I think the most shocking part of the judge's ruling. That the security guards acted reasonably. Three sets of handcuffs, and having the person on their stomach while handcuffed, is excessive and wrong. For anyone. The visibility of Robert's "different" SHOULD have made it clear sooner, but they shouldn't treat ANYONE like that.

I'll send the advocacy letters. I'll post this blog, and keep sharing things on Facebook. But this is often a matter of "preaching to the choir". If you read my blog, or are my friend on Facebook, you already are emotionally attuned to the wonder of my daughter and people like her. How do reach The Others? The Mean People?

For that matter, how do we reach the not-mean people, the well-meaning people who still don't "get it"? There's a girl in Sofia's Inclusion homeroom. Sofia loves J, and J loves Sofia. But J treats Sofia like a Cabbage Patch Doll. "Sofia", she says, as if she's talking to a sweet little two year old. And then she picks Sofia up and carries her. And the teachers do not go out of their way to notice or correct J. Even though Sofia is more than a year OLDER than J.

I'm looking forward to Sofia moving to the sub-separate classroom. Should happen very soon - finally got the paperwork signed this week. She'll still be in homeroom for art, music and PE, but more learning will be done in the small classroom.

My daughter is different. She learns at a different pace than her "peers". She focuses on certain things - her movies, her toys - more than her peers. She needs a different mode of instruction for many things, and lots of repetition. But she is ABLE to do so many things. She continues to WOW anyone who watches her (swimming is the most gratifying time, as there are frequently different adults bringing all the kids, and so many comment on how great Sofia does in swim class).

At our seders this week, Sofia followed along in the Haggadah and sang many of the prayers. She and Lilie (along with me and Laura) chanted the first of the Four Questions both nights. She loves to set and clear the table, and help light candles, and direct people to their seats. She can recite the lines for many of her favorite movies.

She has been keeping her glasses on much longer, although last night we spent about an hour searching for them (that's what got David upset at her - he'd ask "Are they...." and to every suggestion, she said "Yes".)

She's tired, from staying up late every night, so we're relaxing now. David took the boys rock climbing, and my parents are coming up this afternoon.

Trickling off...

Thursday, March 14, 2013

Just so many things to report

It's been a VERY long week. Made much longer by the return of my sinus and double-ear infection. UGH. This one really knocked me out. I felt like someone had poured cement into my skull. It's only just starting to fade, with the help of antibiotics (and herbs from the acupuncturist). My voice is still raspy - Monday I couldn't talk at all, so at least raspy is progress.

The boys have been really good while I'm sick and David is away (he's in New Zealand again). They've stepped up and helped out a lot around the house. Yesterday afternoon, while I was at swimming with Sofia, I called to tell the boys to take out the trash. Sam argued about doing it later, but I said "Do it now while it's nice out." After I hung up the phone, another mom sidled over to me and asked "Are they really going to take out the trash? You sounded so calm!"

I'm prepping for Passover...a little. The sinus-and-ear infection isn't helping my motivation, but the knowledge that I'll have a family of 5 (my friend B from Florida) sleeping over most of the holiday week is certainly motivating enough. Friday (when we got 17 inches of snow! and had another snow day), Micah and I spent some time cleaning out the basement. The entire bathroom down there is now filled with toys to be donated. BigBrotherBigSister is arriving on Tuesday, but they won't take ride-on toys. Anyone know where I can donate those?

Oh! And last week we also had a night with no heat! The furnace just stopped. My neighbor came over, and then later another friend from shul spent time looking at it, but no one could figure it out. Fortunately, it was an easy fix - the door switch was not engaged - but the whole thing is going. Both the furnace and water heater are nearly 20 years old, new with the house, so we've been VERY lucky so far.

The first quote I got was astronomical - $15,000 - but the guy who came yesterday seemed more reasonable. I'm still waiting for the official quote from him, and looking for one more suggestion.

Last Tuesday after school we all rode into Waltham to pick up Miss Sofia's first pair of GLASSES:

Since then, we've had to go to the local eyeglass place twice to get them adjusted, and I bought a strap (which she HATES) to keep them on. We keep finding them in all sorts of interesting toy boxes... she usually does know exactly where they are when we ask. The frames had better be sturdy, although I suspect we'll have to replace them sooner than usual no matter what.

And since her nose is not too flat, we were able to get off-the-rack frames, rather than Specs4Us, which are made especially for kids with Down syndrome.

Miss Sofia is starting to transition from her homeroom into the smaller sub-separate classroom. Right now, as we wait for the IEP paperwork, her SpEd teacher is taking her into that room to do their work together, but as soon as the paperwork is signed, she'll be there more often. I'm really excited about it. There are only 5 other kids in the class, just like at her MWJDS class, and it's a better language pace for her.

But the thing that's made a huge difference in her language this week is The Lorax. She discovered the movie (on Netflix), and watches is about three times a day. She's all full of words about it, telling stories and "singing" songs. She's been very chatty and bouncy this week (yes, when I'm sick). Kind of like Puppy Uppers.

Sunday afternoon we had her birthday party, which was also a lot of fun. Laura and Lilie came up on Saturday afternoon.

She was very bouncy, and excited about her gifts. Laura got her Bullseye to go with Woody and Jessie. Someone got her a mermaid Barbie. Someone else got her an Art kit (decorate your computer set), which she insisted on working on Tuesday afternoon. First time she's really insisted on doing an art project, ever, even if I was the one who did a lot of the work.

Sam took his Math Placement test, and I have to finish getting all his paperwork in for High School course selection. Scary.

Micah is Micah. Getting taller (and thinner, if possible), and bubbly and cuddly. He and I fell asleep cuddling while watching a Harry Potter movie last night. Sweet boy.

I've been asked to be the parent-speaker at the Chai Society event next week for the day school. Chai Society is the big donors. I spoke at it a few years ago, too. Cool.

My third grade students finally debuted their Torah reading skills on Tuesday, and did GREAT. I'm so proud of them.

Oh, and the other day, I was at shul, telling the lady in the office about the challenges I'll be facing for Passover. Guests include a kid with autism and his parents (who I think both have aspbergers), another kid with aspbergers, a lady with altzheimers, kids with ADHD, etc. It wasn't until I got back to my car that I remembered: Oh yeah, and my daughter has Down syndrome! Ha. My version of normal.

Thursday, March 7, 2013

A Video I Made

I'm proud of how it came out!

Tuesday, March 5, 2013

Trying to wake up enough to function well

I have been just SOOO tired for the past week. Not sure if it's the weather, an early cycle, or a low-level bug, but I am wiped out. Must nap daily. Deep naps, too, nothing lite. Sunday, I'd fallen asleep in the comfy chair, and when one of my kids woke me up, I literally could not remember anyone's names for a few moments. Ugh!

I saw my husband for a few hours this weekend. Just a few. His flight from Germany (actually, the connection from NJ) was delayed, so he ended up taking the 12:15 am Logan express bus Saturday night - I picked him up at 1am. And he left yesterday afternoon for 3 weeks - first San Jose and then off to Auckland. He'll be back in time for the Passover seders. Just.

Thursday was a LONG day. Sam had his Ashland reading group and support session in the morning. Micah gets a ride to school, so after I dropped Sam at the middle school, I worked out and then went home for a quick shower. Usually when I pick him up at 9:30, he comes right out of the school and we race off to MWJDS.

Nope. This time the Counselor comes out and tells me I have to go to the Principal's office! It turns out that one of the kids in the Reading class made an anti-Semitic comment, which the teacher felt was directed at Sam.

I was impressed by how seriously the school took things, and how they handled it. By the time I came in, the kid's parents were already in meeting with the assistant principal. Sam, his counselor and I met with the principal, who told us what their procedures are for this type of behavior. Sam was given a Good Citizen t-shirt (which he wryly told me he wasn't going to wear). He was assured that HE was not in trouble, and if the kid ever gave him any trouble, he should report it immediately.

In the car on the way to MWJDS, Sam and I had a great talk about the incident. We were both impressed with how the school handled it, and Sam felt that his MWJDS classmates should know about it so they could also be ready for the "real world" next year. He also said that, although he recognized that what the kid had said was not good, "it didn't really make sense." I explained that often, slurs like that really don't make sense when you examine them. 

Whew. I was proud of my kid, and impressed by the school. Got to MWJDS, had a couple of quick check-ins with the staff about the incident (and about the new math test they gave us...). Some quick errands, and off to pick up Sofia.

Instead of going to MWJDS, Thursday was Children's Hospital Waltham check-up day. First up, Ophthalmology. Guess who is getting glasses?! Hopefully we can pick them up this afternoon. I'm waiting to hear.

We were there a long time, between the checkup, waiting for her eyes to dilate, and then picking out the frames. Pink and purple and lots of bling, of course.

After a quick snack outside, we then went to the Sleep doctor. As expected, her sleep study in early January was absolutely perfect. Only minor issue was slightly elevated levels of CO2, which is typical with Down syndrome. I really really like the doctor, and enjoyed the conversation, but it did all come down to behavior - hers and mine. Sigh.

After we picked up the boys at gymnastics, I took my kids for sushi. Yum.

Friday evening we had a great time at my friend D's house. Stayed up way too late!

Saturday morning, Sofia fairly melted in ballet, she was so tired. We picked up the boys and raced to shul, but only stayed about an hour. The boys were having fun in the lobby with their friends, but
the only thing Sofia would do was roll on the floor in the preK service, and it was too hot in that room for me. I've been going to the preK service for a VERY LONG TIME now. I'm tired of it, much as I love the people. I wish she would sit in the K-1-2 class already. We tried, but no such luck.

Sam wanted to go snowboarding in the afternoon, but we could not find anyone to go with him. I was willing to sit in the lobby with Sofia for as many hours as he wanted, but he did not want to go alone. So we all stayed at my friend S's house when we took Micah over there for his playdate. It was nice to just hang out. At one point, S went to watch a show, and her teenage daughter asked, "Wait, don't you have company?" and S and I both said "No!" at the same time!

Took Sofia to the Special Needs Camp Fair on Sunday and had a nice chat with the director of Camp Arrowhead, where I think she'll be going this summer.

OH! and we got a notice last week - the Pool Club we've been going to since Micah was a baby is CLOSING! NOOOOOOO! I have no idea what I'm going to do now.