April 14, 2011

All the Maybes

Tonight, my head is spinning with words like interoception, sensory processing disorder, diagnosis, and occupational therapy. With the introduction of his whisper repeating/palilalia and echolalia, our minds have crossed the line between waiting for him to grow out of it and seeking more help.


On Thursdays, we have to walk to the bottom of the driveway in time to move the trash can before the school bus comes. If I don't get there in time, it's in the way, and the bus driver has to get out and move it before he can pull off on the edge of our drive.

Today, Sam decided 5 minutes before we had to walk down, as I was trying to get his boots & coat on him, that he was hungry. He ate goldfish crackers, then wanted water. I had been asking him all morning if he was hungry or wanted something to eat, and he turned me down. It's frustrating when these things happen, but I also can't deny him because he barely eats at all.

As we walk down the driveway, Danny babbles in the front of the stroller. I pulled out the double stroller with the bench seat so Sam could ride too. I'm sure it's hard to have Danny get so much attention. Sam wants to play a game on the way down, and we talk about monsters.

I don't worry anymore about whether he'll get on the bus or I'll have to walk him to the door and encourage him to set foot on the stairs. He takes his backpack and does it on his own now. His driver chats with me about the weather, and Sam taps him, says he needs to tell him something. He tells him how much snow there was this morning. It's all melted now.


Justin has a harder time dealing with Danny than he did with Sam, because he sees so much of himself in Sam that he knows how to handle him. Now, with all his quirks and his personality, Justin remembers things that made parts of his childhood hard for him.

In the end, it all comes down to this: no parent wants their child to have a rough time. It's hard to keep my mind from thinking of this as something being "wrong." It's not wrong, it's just different. It's everyday life for me, and whatever happens happens. But I've heard too many stories of kids whose parents had a hard time getting them what they needed. Too many stories of fighting with insurance companies, school districts, labeling our kids. Sometimes, when your child is on the edge, or not classified/labeled, it makes things harder because you need a diagnosis to get treatment.

It's all just speculation on my part. I'm sure I'm getting ahead of myself here. I read checklists and there are things that hit the nail on the head. But there are a hundred more than don't describe him at all. It's such a big basket, this sensory thing.


I got an email from my Mom today. I think she said it perfectly - as a grandmother, she wants to believe he'll just grow out of it. But as an educator (20+ years in early childhood and special education), she thinks he needs more help. I totally agree. I think he does too. As a mother, though, right this moment? I don't fully want to accept it.

Justin has had this feeling in his gut for a while that it's not just passing phases and things he'll grow out of. Maybe it would have been better if we'd pushed harder, sooner. Maybe not. Maybe Sam WILL grow out of this stuff. Maybe not. Maybe he'll get diagnosed with something like sensory processing disorder. Maybe they won't put him in that group, but there's no denying he has sensory issues.


I know I'm all over the place, but that's how I feel right now. I'm not committed to a diagnosis, or to an explanation, or to a certain feeling. I'm just all maybes and what ifs and wheres and hows and love and fear and pain and somewhere in there, there's some peace & hope. I know it will come to the head of the class soon.

1 comment:

Shana Baehr said...

Oh sweetie.
I'm not pretending to be an expert on sensory disorders. I do remember when my sister-in-law went through getting my nephew diagnosed. We all thought he was just quirky. But she got aggressive when he was about to turn three. She got him tested and found out he had autism. My in-laws have run the gambit figuring out the best therapies for him. He is high on the spectrum but with his diet and therapy, he is doing pretty great. I am constantly amazed when we go to visit. He speaks to everyone in the family, not just the ones he sees everyday. He speaks! For years, he would only communicate through sign language.
You're a mom. Those feelings and flashes of intuition are telling you how best to help your boy. A diagnosis of any kind will not change the fact that you and your family love him and that he loves you. It will just tell you how you can best help him.
I'll keep you in my thoughts...