Tuesday, March 12, 2013

Am I Disabled?- Having the disability conversation with my #autistic son

I have talked quite a bit about Bubby growing up into a socially conscious young man, lately.  He really has grown leaps, and bounds in just the last 6 months alone.  It's as if a switch as flipped in his mind, and social consciousness was turned on from pretty much what appeared to be the off position.  Black, and white really.

So as you can imagine, some of the questions he asks, and statements he makes sometimes leaves me looking for words.

Such an incident happened a few weeks ago.

We were at I-HOP.  We had just swished into our booth, and picked up our menus. This is always a settling in time for me.  It's the moment where I feel out the nearby tables to see how much Beans loud stims are gonna bother them. Here lately, Beans has been deafeningly loud with his verbal noises that flow from his mouth almost constantly.  As his voice deepens these noises appear to be louder, and louder. I try to give Beans some toys, and make him as comfortable as possible.

"Ahhhhhhrrrrrrr"  he yells.  "MMMMMbaaaaaaa"

Then, it happened. Bubby says "Shhhh Beans! There's people over there! They can hear you."

Me: Well, he's trying, but he gets overwhelmed in restaurants.

Bubby: Is it embarrassing?

Now, this is misleading.  My son isn't asking necessarily anything. He often times speaks in questions, and asks questions that he knows the answers to, or thinks he does.  This questions speaking type of scripting is much better than it was a few years ago, but it's definitely still there. He's not really asking if Beans is embarrassing.  He's pretty much saying he believes he is. I explain to him that I don't think so, and that noise is how Beans calms himself.  While at the same time trying to remind Beans that we need to use quiet mouth.  Seems like maybe I am not being truthful with Bubby, but I don't mind the noise.  I know it's necessary for Beans to do it, but I would like it to be taken down to a less ear shattering level, to where it isn't heard across the whole restaurant, and interfering with other's meals.

So, then we begin looking at menus, and talking.  I mention something about how schools now have to provide adaptive sports to disabled kids to my husband, and father in law.

That must have sparked a thought in Bubby's head.

Bubby: Mom, am I disbaled?

[remember how I told you he expresses his thoughts in questions. He's not really asking as much a stating it, and wanting me to repeat it to him]

Me: Well, ummmmm.... I...uhhhh Well, I guess that depends what you mean by disabled.  You're different, and sometimes need different things than others.

[I wasn't ready for this conversation. At all.]

Bubby: Yes, but I'm not disabled.  Beans is disabled.  I am not.  I may have a form (he forms his fingers tips together into a triangle to really drive his point home) of autism, but I am not not disabled.  I am not like Beans.

Now, I know that many of you reading this think that AS is the next step in human evolution, and is a gift. I don't subscribe to that theory.  I have really had to shift the circle of friends that I have in the last few years due to difference in opinion on this matter.  I don't do aspie supremacy, nor do I think that every time someone says something that I don't like I need scream about my civil rights being violated..I imagine this is due to leading a very not privileged life as a teen, and seeing what rights being violated really means. The memory of the places I've been (voluntarily, and involuntarily) serve as a reminder of what disability discrimination looks like, and what it can mean to be truly disregarded as having no rights, but that is a story for another day.

So, here I am literally sitting in between my boys, and one wants to discuss how he is not as disabled as the other.

Before you jump down to the comment box to talk about how great AS is, I want you to read all of this, and think about it for a second.

I am sitting here with one child that some call Asperger's , others would say PDD-NOS, and another child that is severely autistic, nonverbal, and most would label cognitively delayed.  We all have an Autism Spectrum Disorder.  All three of us differ enough from the norm to qualify for a diagnosis of ASD, and need to live our lives differently in order to be successful. What may seem like a tragedy to many seems normal to Beans.  He is who he is. Bubby is who he is, and I am who I am.  How do you measure disability?  Is it by the DSM code book?  Is it by what your neighbor thinks? What the school system says?  What is the difference between a different, and disabled?  On top of all of those age old questions, I am needing to tread lightly, because I know Bubby is asking, because he doesn't want to be different.  He doesn't want to have access, nor utilize the accommodations that he needs at school to be successful.  He refuses to use any of it, then fails to hold it together by the end of the day, citing that he hates school, but what he hates is looking different than his peers.  What he hates is adapting.  If I am to answer him, I have to do it in a way that neutralizes the use of accommodations, as well as does not insult Beans who is listening. I have to be very careful not to use one child's autism as a comparison of how bad it can really be for another child. You see the conundrum of viewing only certain types of autism as disabling?

All those things were flying through my mind, and the place was noisy, and waitress kept interrupting... I just had nothing prepared for this. It was all improv.

So, I tell him that there is no marked cutoff for what makes one person more disabled than another.  He contends that he can talk, and Beans cannot.  True. But, his autism is different.  Everyone who has autism is different from each other.  It's the nature of autism.   I remind him that Beans can still hear him, and that autistic people are just wired differently than most people.  They need different environments, and help that others may not need to be successful.  I reminded him that difference does not equal bad.  It just simply means different.

I don't know if I handled it well, or poorly. I just know that it was a hard question to answer. I don't even understand the full subject matter myself, and my ideas change, and shift often as I learn, and grow.  All I know is that both of my boys have value as people, and I'm not allowing anyone to tell any of us different. We don't use terms that subscribe to functioning levels.  We're more than that.

1 comment:

  1. I think you did really well in your explanation. Personally I don't really like the word disabled. Differently-abled? Everyone is different on or off the spectrum. And just as there are things that Beans or Bubby can't do the same as others I'm sure there things that they CAN do that the rest of us can't. Measuring one person against another is always a bad idea.


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