Wednesday, March 19, 2014

321 A Day In The Life

Friday, 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."

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!"

But as part of a 3-21 A Day In The Life Blog Hop by, here's my Day In The Life of Sofia:

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.

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.

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.

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.

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...

Off we go, racing backwards down our very steep driveway in my minivan. Thrill Ride for the Day.

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.

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.

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.

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.

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").

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.

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.

What's missing from this schedule?


Any kind of playdates.

Any getting together with Friends.

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.)

It kind of sucks.

I don't mean to be depressing. Usually I'm completely in awe of and enthralled by La Principessa.

But sometimes I wish ....

Ugh. I can't believe I even said that to myself.

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.

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.

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.

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.