My Son is Low-Functioning and I Think That's a Blessing. No, I'm Not Crazy.

Alright I am a little. But not completely. Yet. HUSH.

And first things first I want to make something clear - I HATE that terminology. "High-functioning/Low-functioning" ... hate it. It sounds like we're talking about machines. Machines "function". My son is not a machine, nor are any of the other children on the spectrum. But since I haven't yet come up with anything better, I use it so you know what I'm talking about.  

 

I think about this a lot as all of our kids are so different. But it hits home more and more when I hear or read about kids on the spectrum who get bullied, teased, shunned, turned away from programs or schools, all because of their differences, and how sad and heartbreaking it is when they are cognitively developed enough to have some understanding of it all.

One specific instance comes to mind as it was the impetus for me to write this. A parent of another little boy with autism was relating how heartbroken his son was at being turned down by a particular school because they were concerned about his behavior and the other kids' reactions to it. He spent the day there with them. He had been excited. And then his dad had to tell him he couldn't go... his son wanted to know why they didn't "want him". I cried and he's not even my child. I can't imagine how difficult it is, not only dealing with the behaviors and issues but on top of that, to have to some how help them understand, cope, and move on. It's tough when I have to coach Zach through life's curve-balls, how do you do it with an autistic child who has some understanding, but not all of the social/emotional/cognitive tools they need?

Josh, on the other hand, does not have this problem. I believe his cognitive and growth delays combined have actually served as a gift for him, given his issues. Particularly when 

it comes to school. Because his delays and issues are so severe, he's always been in a self-contained classroom. Right out of the gate, this protects him from a lot as far as peer behaviors go. He has always participated with his grade-level peers in varying degrees over the years, but again, because of the severity of his issues and delays, he has had an aide with him at all times. So there is always a grown-up, someone to keep him safe.

His being so small gives him the appearance of being much younger than he is. This brings out the "awwww" factor in most people, including other kids. He's little. Most of them see him as someone they need to take care of, especially the girls. He's had many little mother-hens in school over the years. Including this year, he has a "helper", one of the typical girls from the 7th grade who comes in to his class a few times a week to work with him and his aide as part of a program at his school. She loves him. She talks at me in the classic, ultra-fast, high-pitched, everything-needs-an-exclamation-point way that young teen-aged girls do, mostly about how small and cute Josh is.  I know she has seen him on rough days, but his overall package is one of vulnerability which just brings out the protective instincts in everyone.   

I would venture to guess that even if some of the boys were more inclined to not be so nice, the fact that the girls love him would be enough to keep them from saying or doing anything - what boy in his right mind is going to piss-off the girls he's hoping to date some day???

But I don't even think that anyone is ever inclined to be mean. Because of how severe his issues are, he doesn't interact with other kids. So he's never in situations where the other kids might be uncomfortable with trying to talk to him or witness a melt-down first-hand. And when he does say anything, his voice is still very toddler-esque, so he sounds cute. How can you bully someone that sounds like a 3 year old and is talking about Blue's Clues? I'm convinced it all plays a part in the safe little bubble he seems to have around him.

We haven't had to deal with issues of inclusion, either. Which when it comes to Sp Ed, can be extremely hard to navigate. Josh is not capable of being in a Gen Ed classroom, even with an aide. Not only has this made it less likely for others to bully or be cruel, it has also made managing his education quite a bit easier. Don't get me wrong, I've done my share dealing with school districts - I even spoke out at a school board meeting against changes his first school district was trying to make to the Sp Ed program. You are only "allowed" 2 minutes to talk. I spoke for 9. http://www.youtube.com/watch?v=NoXLu9Rz70g I have dealt with some difficult things as far as school goes over the years with him. But at least I have not had to worry about how the kids were going to treat him or react to him in a typical classroom setting.

That might seem backwards to some of you.

Am I happy that Josh is 12 and is still in Pull-Ups? Are you kidding? Of course not. Am I happy that he will need me to care for him the rest of his life? Obviously, given a choice, I would not choose for him to be autistic, no. But he is who he is, there was and is no choice in the matter. And given that, I am in fact thankful for small blessings.

There are those who will tell you that even though he can't communicate in any effective way, he still understands. Well, I'll go out on a limb to dispute that. Josh is not the child who can't speak but hand him a keyboard and suddenly he's typing full, coherent sentences. He is not the child who with an assisted communication device can have a real conversation with you. He's just not. I've known him for 12 and a half years, and while I know that there is quite a bit that he understands without being able to communicate it, I also know there is far more that he does not. Josh is not going to be upset if he doesn't get to go to a certain school. He's not going to tear my heart out by asking why he's not wanted somewhere, why kids don't want to play with him, why he doesn't go to birthday parties, why everyone is staring. These are concepts that he doesn't understand so they're  meaningless to him.

And for that, I am glad. His life is hard enough on him as it is without the pain of knowing he's different but not understanding why.

For those of you with kids on the spectrum that do have to deal with these issues, my heart truly goes out.