Saturday, January 26, 2013

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    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 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 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)



Donna said...

As usual my dear friend this is brilliant! You can certainly open people's eyes. It makes me want to run right up to Oscar hug him and tell him he's just wonderful. All of your children are wonderful. You are so right. There is no respect for people with disabilities. My Becky lives it every day. I wish we had an advocate like you when she was in school. Keep up the good work Mama.

Bright Side of Life said...

This was such a interesting post to read. I am not sure in what way you felt offended that Oscar was helping the staff? Do you feel that the job was menial? I guess it all depends on the approach the teacher took... if she was using the experience to facilitate social engagement. Oh, I don't know.... I would rather chat about this face to face rather than leave a comment on your blog! :-). My comment is not in judgement but just made out of curiosity. xx

Looking for Blue Sky said...

So ad for you and for Oscar. But I can also relate to how difficult it is being s mum and trying to decide whether to let your kids with special needs be themselves or whether to try and change some of their behaviours so that it is more socially acceptable. And I don't have any answers either xx

kathleen said...

@ Donna- kids love you too..AND Becky had YOU-which is why she has had a life-a good life..she has a job and a family...those things would not have happened if you did not advocate for her when she was too little to do it for herself..:)
@ Brightside-no worries-I love your blog..and judgmental would NEVER be a word that I associated with you! I probably just wasn't clear enough..Last year Oscar attended regular classes(different school-he moved up this year) This year he was put in the spec. ed room full time..(this was not the plan we had all agreed on-it has changed after this incident) Yes, shucking corn was menial.. What skill is he learning? The few kids involved-are all like Oscar. Oscar said no one was talking. He didn't like doing it either. The idea that my son-who is capable of doing school work was made to do this instead of science class..what does that say to him? Calling it a "controlled environment"..Again-why does my son need a controlled environment? He hasn't committed a crime. He has participated in main stream education for 5 years before..he is a well behaved all around good guy. Hope this made more sense..:)

kathleen said...

@Bluesky-Thanks is nice to know that I am not the only one trying to figure this out..:)

Bright Side of Life said...

Yes, now it makes more sense to me.... so much for the teacher saying it was for social skills, when no one was actually talking to each other and there was no engagement!!! Thanks for elaborating further, I appreciate it. Thanks also for loving my blog! :-)

farmwifetwo said...

All I can say about shucking corn is that it's a decent skill to learn... takes in OT, SLP if he's visiting but school is not the place or time since the staff gets paid for that crap.

As for the flapping in public... Up until Fri I would have said "not a big deal" but Thurs I read about who we were going to see at the Hand and Upper Limb clinic. I thought we were going to see an OT, get sent to PT and get a night brace. No, we're going to see the guys that fix the nerves in your hands at the children's hospital. Yesterday my girlfriend had her Dh (nephrologist) translate the website and explain some of that info. Today I realized that not only are those 2 fingers fu....ed on my kid's left hand he has very little movement at all in any of his fingers. Damage, that not only could be caused by handwringing but also flapping.

I'm now dreading tomorrow. Not just b/c I have to drive an hour one way in freezing rain... but also if I'm going to get told that flapping is not better than letting him wring his fingers. If I discover that Kim's told me I can write a post on the ABD about it.

jazzygal said...

Brilliant post as ever Kathleen. Interesting thoughts on 'autistic people are all brilliant' and I see where you're coming from. It IS good that someone stuck up for him though:-)

My boy talks loudly, squeals a bit and goes on and on and on with silly stuff after school most days. He says it's because he's had to sit quietly and concentrate ALL day ;-)

I too wondered about the shucking corn incident as I saw it as great OT. But I now totally see where you are coming from. How very dare they?! Our previous school had cooking one morning a week for kids with Dyspraxia and kids (like my boy) who could benefit. Now THAT was great OT AND a calming activity with social skills included :-)

xx Jazzy

kathleen said...

@bright side-it is a lovely positive place your blog is..:)

@Farmwife-yeah-I never made too much of it until I read about people who don't stim-stimming purposly in public in order to raise awareness..horrifying. I would be very interested in hearing what the doctor says...Oscar has complained from time to time that his elbows and wrists ache-he really puts a lot into his stimming. I hope he isn't hurting himself.
@jazzygal-yes! I think having to sit still and follow directions all day long can be one of Oscars reasons for so much movement as well..I would LOVE for our kids to have cooking/food prep as part of their schooling. I think it could be great fun-AND maybe they could carry it over to home? But this incident-broke my heart in a million different ways..for a whole bunch of different reasons. My boy knows how to shuck corn-as I have had him do it at home to help...but sticking him in a "controlled environment"!!!Just the suggestion that he needs one-kills me...:(