Friday, March 11, 2011

My Son Rides the Short Bus

I was at my special needs support group last night, and as I was sharing about trying to get the ball rolling for Skye's IEP (which is not going well), one of the ladies said, "It must be hard for you when your kids' disabilities are not visible.  I mean, I've met your kids and I would never know they had any kind of disabilities."

Yeah.  It's hard.  I mean, my kids appear to me healthy, normally-developing, strong-willed kids.  And, in most ways, they are.  But spend a day with us, and little things start to make you go "hmm..."  Like the way that Munchkin has to lick everything and screams at the top of his lungs for what seems to be no reason.  (Except, believe me, he has a reason.  The rest of us just don't get to know what that reason is.)  Or the way that Squirrel chews her fingers until they bleed and bites her arms, leaving bruises, when she is stressed out.  Or just the every-day chaos that envelopes our home with two children who can let loose with all the sensory overload that they must try to control in school.  And if you just look around my house, you'll see picture schedules for each child, and a "how-to" guide for brushing teeth and getting dressed, and little reminder pictures all over to help them remember what needs to be done.  Most houses with elementary school kids don't need those!

But if you aren't with us for long, you won't see that.  You'll see Munchkin hiding under the table in a restaurant, or yelling loudly that something smells weird, and you'll wonder why we don't make him behave in public.  You'll see Squirrel hide behind me when the cashier talks to her, and refuse to make eye contact or talk to the strange woman, and wonder why we haven't taught her to be polite to adults.  You'll see Munchkin run screaming from his Sunday school classroom, after smacking the child next to him and telling the teacher NO for the tenth time, and wonder why we haven't reigned in his difficult behavior.  You'll see Squirrel (and Munchkin, for that matter) chewing holes into their clothes, and ask them something stupid like "Does that taste good?  Aren't you too old to be doing that?" and wonder why we let our kids act like babies still.

So, yeah, it's hard to have children with "invisible" disabilities.  Most of the other parents in my support group have children with much more obvious needs.  They deal with feeding tubes, and wheelchairs, and assistive devices for speech, and seizures on a daily basis.  Everyone looks at their child and knows that this child has special needs.  And while there are many idiots out there who still don't get it, most of the world knows that this child cannot control the way he acts.

And me?  Well, I deal with people asking me things like, "Are you sure he has autism?  Because he's so smart!"  (Yeah, the thousands of dollars we spent to have him diagnosed make me pretty sure he does.  And many kids with autism are's a neurological issue, which doesn't always affect IQ.)  Or, "Why is she in therapy?  She seems fine!"  (Because, again, the team of doctors who diagnosed her know their stuff. And by the way, many people "seem fine" and are struggling inside!)

The problem is, we have a messed-up view of "Special Needs Kids"  that defines them.  Part of it, I think, comes from our upbringing.  When I was in school, the special ed class was kept completely separate from the general ed population.  They rode their own bus, ate lunch in their own cafeteria, had all their classes in their own self-contained room.  If it wasn't for a friend who's brother was in that class, I may not have ever known it existed.  And the children in those classes had visible needs.  Children like Munchkin wouldn't have been in the Special Ed classes 30 years ago.  They would have been the trouble makers, the class clowns, the nerds, the ones who got picked on in the regular classes--they wouldn't have been identified as having special needs.  Children like Squirrel never would have gotten special help.

(You know how I can say that with complete confidence?  Because I was a child like Squirrel.  Had I been evaluated at age 8, I would have received the same diagnosis as her!  But they didn't catch things like that back then, so I sat in the back of the room, and kept to myself, and occasionally got in trouble for being too talkative or too hyper or too wiggly, but mostly just floated through school without drawing any attention to myself except as the smart kid.)

So, when you see my children, remember that special needs can take on many forms.  It's not always something you can see.  In fact, in this day and age (when 1 in 94 kids is diagnosed with Autism, and 1 in 20 has SPD) there often won't be any visible signs of special needs.  Don't be so quick to judge the child who's acting up in public, or the parents who seem to be at their wit's end.  You may be seeing something that neither the kid nor the parent can control!

Gone are the days when the kids on the short bus were different from "the rest of us."  My kid rides the short bus, and you know what?  He's not all that different from you or me.

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