Flapping in public...

~"Come on now, who do you, who do you, think you are,

Oh bless your soul

Do you really think you're in control"~Gnarls Barkley

   Lily came to me the other day and said "Someone told Oscar to shut up on the bus." .."What?!..Who?! ..What was Oscar saying?" "I don't know..just some boy..Oscar was eeeeeing.." .."Well, what did Oscar say?".."He didn't say anything..some girl told that boy to leave him alone..she said "Don't you know that he is autistic?  they are like the most brilliant people in the world!""..*sigh* how do I respond to this?..I laughed.."Lil-you know that isn't really true..I mean-sure, there are going to be brilliant autistic people..but there are also going to be not brilliant autistic people...and everything in between." 

  This is one of those things that is hard for me..On one hand-I am thrilled that someone that we don't know stuck up for Oscar-but on the other? I really don't like this "all autistic people are brilliant" myth.  This is the first that any of my kids have heard it.  Not so for me. I can't tell you how many times that I have had said or have had written to me "You KNOW they can be brilliant!" As if this is some sort of consolation for having autistic children-as if I NEED consolation.  I find it incredibly insulting. Not just for me as a parent-but especially for my kids. As it gives the message that who they are is simply not enough.  

  All of my kids are unique individuals. Of course, being from the same family-they share commonalities.  They also have unique differences. Things about them that make them...well, them.( Of course, to me, they are all brilliant. I'm their mom!  I own my bias.) Take Oscar for example-he stims.  He flaps and eeeeee's..spins and shakes. He always has.  Sometimes I think it is because he doesn't always have words to explain what he is feeling. Language, either verbal or written is not easy for him. So we see stimming as a way of expressing what is going on in his life in that moment- one of Oscars ways of communicating. It is also NOT A CHOICE.  It is NOT something that he "decides" that he is going to do.  It just...is.    We let him.  That does not mean that we don't intervene from time to time. That we don't ask if everything is o.k. That we don't tell him that stimming loudly is not polite in certain circumstances. (i.e. when the teacher is speaking, or any other time when being quiet is appropriate) We have also been very up front and honest about how other people might view it. 

 Sometimes I worry if this is a mistake. That maybe we should stop him-redirect him. Because the world isn't kind. Because too many people judge on what they see instead of what they know. I worry because Oscar trusts me to tell him what is o.k. and what isn't. His confidence in himself-who he is-is formed out of that trust. That is a huge responsibility for me.  One that I do not take lightly.

  He trusts me. From the moment he gets up in the morning until he lays his head down at night, his day is filled with doing all the things that I have asked him to do.  He does them(mostly) without question. Simply because I asked-and he knows that I would not have him do anything that was improper or wrong. So maybe you can imagine the absolute horror-the stomach dropping sickness that I felt when I found out what he had been doing at school one afternoon. "Hey Oscar! How was your day?"  "Good."  "What did you do?" 

                                    "I shucked corn for the cafeteria people."

"What?  What do you mean? did you do something with one of your classes?" I thought that for sure it was some sort of hands on learning project-say for history or maybe even math.  "No.  it wasn't a class."  "So you shucked corn...to eat?  did you all learn how to cook it?" "No, we had to peel it to help the cafeteria people." Now remember, Oscar has difficulty with language. So I decided to send out an email. Here is the response (in part)

"I was presented with the opportunity to get the kids out of the classroom and in a controlled environment where we could practice social skills while simultaneously help out the cafeteria staff."

  I believe that had I been made of glass, I would have shattered-broken in  to a million different pieces. I think that I even stopped breathing for a moment.  My son-my beautiful boy was made to peel corn at school that day-to help the kitchen staff....and it was looked at as an "opportunity." Are you freaking kidding me? My boy, my child, the absolute light of my life and one of my reasons for being was delegated to menial labor as a form of education. Menial labor in a "controlled environment!" He isn't a prisoner!  He is a child, a boy...an almost young man who is looking to us (his parents, his educators) to show him, help him get by, to navigate this very confusing world. This is what we offered him. The worst part-the part that absolute cripples me with guilt-is that he did it because he trusts me.  But mostly-I hurt for him. Because he didn't know it was demeaning**.  

  I have four very wonderful children-three of whom are on the spectrum. I do my best to teach all of them how to advocate for themselves as best they can. I teach them that everyone-no matter what or how they may be different from them-is entitled to courtesy and respect. I teach them that they each are worthy of respect in their own right.  That they don't have to be brilliant in order to be accepted.  Nor do they have to assume some sort of "autistic" behavior in order to make people "aware." In other words, I wouldn't tell Sam to go out in public and flap (something he doesn't do) in order to bring attention to himself in the name of advocacy.  That would be absurd-and demeaning to his brother and anyone else that stims and flaps. It would make a mockery of how some people communicate. (Yes-I have seen this discussed on line.)

  I have great fears for my kids-especially my son Oscar. When I see how little our educational system values him(look at any states budget cuts, look at corn shucking) When I see how little our society values adults with disabilities (just look at any state budget cuts, look at our institutions and state run homes, listen to the politicians discussing "takers") When I see how organizations and people discuss disability and know that my son is disregarded because he can not speak (very well) for himself. You bet I'm scared.  The thing is, I do not know what to do. Except to teach my children to be strong in who they are. That who they are-brilliant or not, is good enough. Now if the rest of world would only follow suit...  

  

  **(of course I dealt with this-of course I explained to Oscar how this was wrong-and told him that he never had to do anything like this at school again.  But those conversations are not the point of this post)