8 Days A Week

It’s Monday morning and my heart is already pounding.  Granted it’s been beating faster than a hummingbird’s wings since Saturday, like a high school kid who left all their homework to the last possible moment, I can’t seem to catch my breathe.  Right before we left for Thanksgiving break it became apparent to us that Aleck’s aide who he’s had since the end of September is just not working out.  Our usually very participatory child seems to have pulled back from school, not wanting to cooperate with his classroom responsibilities and he doesn’t seem to be playing with too many of the other kids in his class.  Everything came to a head when he refused to be filmed for the class Thanksgiving video spending 10 seconds saying his name and what he’s the most thankful for.  I believe in all 3 junior kindergarten classes he was the only kid who refused to cooperate.  As the boy who spent most of our road trip making videos of himself on his IPad and my phone, a boy who’s been filmed regularly since he was a baby, a boy who loves to talk into the camera, this was an alarm bell for me and Craig. We sent a note to his team at school about our upcoming parent/teacher conference and mentioned that we needed to evaluate how Aleck’s aide was working out and opened the floodgates. Turns out the teachers feel strongly that she’s not a good fit for our classroom and were relieve that we even wanted to open this up for conversation.

So where do we go from here.  We are speaking with the organization who sourced the aide in less than an hour and tomorrow we have our parent/teacher conference at school.  I anticipate 8 or 9 people involved in this conference and I’m scared to hear how Aleck is doing.  The boy that picks up his clothes and puts them in his hamper without asking, the boy who doesn’t get out of bed before the clock strikes 7:30am on a Saturday even if he’s been up since 6:45am, the boy who talks to every person he sees no matter where he is, somehow isn’t translating at school and to hear that is going to break my heart.

But that’s only through Tuesday, we’ve only just begun.  On Thursday Aleck has his IEP meeting just in time for testing on Saturday for selective enrollment schools. Then CPS elementary school applications are due December 9th.  However, we still have to apply for the program and scholarship for BZEADS since we think we are really happy there and probably won’t be happy with CPS even though CPS would provide Aleck with an aide at no cost to us.  If the IEP recommends putting Aleck in a blended class we’re probably not going to be able to consider CPS since we truly don’t feel a blended program is the best fit for Aleck since a blended program is one where it’s a mix of kids with physical and developmental needs. The boy who’s been engaging his teachers since he was two since the rest of his classmates could barely put a sentence together needs to be surrounded by others as verbal and inquisitive as he is to keep him interested and participatory.  But since this version of Aleck hasn’t been following directions, and this version of Aleck hasn’t been responding to his teachers, I’m not putting much stock in what’s going to come out of these meetings.  I don’t think Aleck has read anything to his teachers out loud since he started school meanwhile we are reading Charlie & the Chocolate Factory at home.

At Aleck’s last IEP he had this Occupational Therapist who spoke to him like a baby and he completely shut down.  Therefore he now has on his IEP that he doesn’t listen, he doesn’t cooperate, and he can’t follow instructions.  He can, however, discuss all the planets in our solar system, including the dwarf planets, and talk about their moons and who doesn’t have an atmosphere.  He can also tell you how many millions of miles away is the sun, what the three phases of matter are, and is a little obsessed with the elements that haven’t been discovered yet to fill in his periodic table of elements.  We actually had to take that away from him during meals, it’s on his placemat, in order to get him to focus on his food.

So here we have this incredibly smart Aleck, this gifted, sensitive, articulate, and social little boy who isn’t sharing that with his class, with the teachers who have the resources to keep him going.  Who’s to say he’s going to be everything he can be at his IEP or during his gifted testing?  He’s also the little boy who gets so frustrated when he can’t do things perfectly the first time that he loses himself so quickly, often on the verge of tears, over something like Legos or trying to do Yoga with me.  Unfortunately even though he doesn’t talk about it he’s so sensitive to what he can’t do that it sets him off very quickly and he’s getting harder and harder to comfort and redirect.

Meanwhile he’s making huge progress physically, and almost every single day.  Without braces on his feet or ankles he’s learned how to go up on the toes of his feet.  He’s working hard on jumping since he wants to be able to jump like his classmates.  Since the serial casting last winter, he’s getting more and more bend in his elbows.  He can get his arm way up over his head to reach for elevator buttons, or to lean it against a wall so he can rub his eyes and nose when they get itchy.  He’s getting his hands to his face more and more using tables, couches, crown moldings, to assist in the effort.  While lying on his tummy he can now use his hands and arms to push himself all the up into the cobra pose in yoga, and is close to putting weight on his knees.

At the end of the day this little man has so much pressure on him and is juggling so much that I think the question becomes what’s our priority.  Is it more important to keep encouraging him to read and learn, filling that sponge with information; or is it more important that he’s spending his free time moving his body and trying to do new things physically every day?  Either way it isn’t really up to Craig and I and it never has.  We’ve always followed Aleck’s lead in his education, keeping track of what he’s interested in and providing him the materials so he can satiate himself.  And we’ve always put more of an emphasis on the physical, shlepping him back and forth downtown for therapy sessions, shlepping ourselves to Philadelphia for other opinions and new things we should be doing to improve his mobility and therefore his independence.  This is going to be a very interesting week for all of us, and an exhausting one.



2 Replies to “8 Days A Week”

  1. Whew! Your lives are brimming w beauty and challenge and as always your description is eloquent. I have a coworker w 4 year old autistic twins and her IEP encounters are war battles. Also I’ve become reacquainted w Denise ( another coworker) who has Alana. She is 34 and has arthrogryposis. Alana asked me is Aleck can move his toes.

  2. Hi Annie,
    Thanks for your warm comments! Aleck can move his toes, he’s affected in the shoulders, elbows, wrists, hands, knees, hips, and feet, but has limited mobility in every affected category. It’s amazing to us how far we’ve come since his original diagnosis and prognosis. Thankfully these AMC kids are very determined and strong willed, that’s only going to continue to help us.

What do you think?