Tuesday, January 25, 2011

Day 29: All Mixed Up

This morning, Simon's OT (who isn't sick anymore, yay!) made a special arrangement for us to observe her and Simon doing therapy in the kitchen, which is inexplicably the only place in the program with a 2 way mirror.

It was great to watch the OT and Simon in action. She guided him through his snack, from getting it out, to eating it (without choking), to cleaning it up, all while using both his hands. He needed several reminders to incorporate lefty, and it was really helpful for us to observe the variety of ways she managed to do this without losing the interest and cooperation of her little patient.

After snack, she and Simon played a couple of Wii fit games. She had him hold a controller in each hand so he could race himself in a split-screen jogging game (genius!). Brian and I were cracking up (quietly), and we cheered when a very excited Simon was even more excited when his left hand made it across the finish line (long after righty, but hey!). Next, the OT attempted to get Simon to work on some weight bearing on his hands with the balance board. This was a good idea, but Simon was a little confused about how the balance board was supposed to work (he kept lying his head on it like a pillow). He also thought that the action on the game was really funny when he lost -- the penguin on the iceberg fell into the water with a big "splash" -- so he didn't really see the point in helping the little penguin stay ON the iceberg.

At the end of the session, the OT finally shared the results of the Sensory Processing Evaluation we filled out a couple weeks ago, along with her observations of Simon. The diagnosis is that Simon is indeed Hypo-sensitive, and Sensory Seeking -- on the extreme end of the spectrum. The bad news is, because Simon is involved in so "polar" a way, the disorder seems to affect him in most areas -- his ability to work, play and behave in a "typical" way are all inhibited. The good news is that because Simon's symptoms are so clear, the treatment is pretty clear. In other words, having a direct target will allow us to nail it with greater precision and (hopefully) yield greater results.

So, no surprises. This diagnosis was pretty much what I anticipated following our initial conversations with the OT, and my subsequent research. I am glad that we now have an umbrella to cover the myriad issues we were trying to address and cope with individually, and I'm glad that we now have a better direction to look in when seeking to target treatment. But, let's be honest, it is never a good day when you hear that something is definitely "wrong" with your child. Or, maybe I should say, something ELSE is definitely wrong with my child.

And so, today was a mixed sort of day. This diagnosis is by no means the end of the world to us (remember the frogs in boiling water analogy from a few days ago?), but it also isn't the "HE'S CURED!" we always secretly wish to hear. Simon did well with the casting, and he gained use of the left hand that he didn't have before, but I can already see what a struggle it is going to be to get him to maintain the "gains" he has made. Simon has a clear path for treatment, and our amazing OT at KKI has found a slot to see him on an ongoing basis, but that also means more therapy and more craziness in our already crazy schedule.

And, the truth is that I'm tired. Tired makes me a little less positive, a little more fragile overall. A slightly stressful workday has sapped my resources, I hurt like heck from pulling a few muscles in yoga (twisted bird of paradise can do that to a person), I spent my evening doing math homework with a somewhat truculent second grader, and Simon in his overwhelming joy to have two strong hands played the cymbals -- for two WHOLE hours. I didn't have the heart to stop him, even though it got old after the first hour.

So... Brian is finally home from work (at 8 pm) and the truculent second grader is reading aloud to him from Harry Potter as he eats the cold macaroni and cheese I saved him. Thank God for co-parenting, because I'm going to go have a glass of wine, lie in a hot tub, and simply try to soak it all in.

1 comment:

  1. I hope your soak was warm and wine soothing. You deserve it Laura!