photo credit-Winery Finery
Liz related this story to me this morning, while I was getting ready for work.
Yesterday morning, after dropping Buddy Boy off at school, she stopped at a gas station and purchased a diet root beer to drink. Sweet Pea was still in the car. Liz didn't notice that the drink was nearly frozen, and when she opened it it sprayed all over the inside of the car, as well as all over her.
Fortunately she was near home, and returned there to change her clothes (and finish cleaning the car). After telling Sweet Pea she had to change her clothes, Sweet Pea said
"Don't take off your breasts."
"What?", Liz asked.
Sweet Pea repeated it.
"Did you mean my bra, sweetie, or my breasts?"
"Don't take off your breasts." Liz wonders, is there someone at school whose mom has breast cancer, and now Sweet Pea is afraid that Liz will lose her breasts?
"But honey, they're attached to me. They're a part of me. They're not going anywhere."
"No, mom. You know, the thing that keeps you from jiggling all around."
"Oh, OK. That's my bra. It's not wet. I don't have to change that."
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Buddy Boy is now very verbal. He developed language a little late (he only had a couple of words by the time he was 2 and a half), but rapidly picked up language with speech therapy. A lot of times his spoken communication "borrows" things from books he's read, or movies he's seen. His speech is also somewhat stilted and halting at times. But, all in all, he's very verbal.
But because he's very verbal, I think he is often judged as being oppositional and purposely bad, rather than it being understood that he might not be processing something quite the same as intended, or that he has other problems related to his autism (like OCD) that are making it harder for him to comply.
It seems that the fact that he's verbal gets him "automatically" placed into the high functioning autism (HFA) category. This also means that along with being verbal, since he is seen as HFA he is also expected to be "high functioning compliant". Teachers and school administrators might understand when a non-verbal/minimally verbal student doesn't comply (perhaps falsely assuming that they have no communication skills), but they also make errors in the opposite direction, assuming that once one is verbal, you should also be "normal" in other aspects of your life.
Like many people in the "autism community", I don't like the terms HFA and LFA. There are too many assumptions and prejudices built into those terms, and they really are very heavily weighted by how verbal a person is, which is not the end all and be all of communicating or functioning in general. But society in general, and our schools in our neck of the woods, try to put each kid into a "box" (usually figuratively, though sometimes literally), instead of taking the time and making the effort to acurately evaluate and work with their strengths and weaknesses.
I've been thinking about this a lot, as we head towards another IEP next month (the first one since going full time in Buddy Boy's present school placement). Sometimes it seems no matter how much effort we put into writing the IEP (and explaining things to his teachers), there still seams to be a breakdown in communication between us. Which makes me wonder how much of Buddy Boy's communication is being lost or misinterpreted at school. Oh well, time will tell.
Until then, for my part I'm just glad that Sweet Pea said "jiggling" instead of "sagging". I would have paid for her comment a long time if she had.
Note: I have a big conference that I am helping to run this coming weekend. I may not post again until Monday or Tuesday.
11 comments:
I have a few friends with children who have Asperger's Syndrome. Invariably, this is referred to as "HIgh-Functioning." They are all extremely verbal (take th eword "extremely" in its various different uses, and you'll cover all the aspies we have met). It always amazes me that Joey is a LOT more functional in his environment and society than any of the Asperger's kids we know. "High functioning" has nothing to do with functionality. I think the term was invented specificaly to cause confusion, or to be used as a tool for confusion at IEP meetings. (If my kid is so "high functioning" and you think he doesn't need an aide because he is "high functioning", then why are you placing him in a self-contained classroom? )
The "breakdown in communication" also seems to serve as a tool to deny service. It is as if special needs teachers, administrators, and school therapists are shocked that a child with special needs might have... special needs. WTF?
We'll be thinking of you guys and your prep for the upcoming meeting. Sending lots of good luck and good cooperation vibes your way!
If my kid is so "high functioning" and you think he doesn't need an aide because he is "high functioning", then why are you placing him in a self-contained classroom?
Were you sitting in the corner last year during our IEP's? Do these people all follow a script from the same playbook?
The "breakdown in communication" also seems to serve as a tool to deny service. It is as if special needs teachers, administrators, and school therapists are shocked that a child with special needs might have... special needs. WTF?
This is where we needed our lawyer to get in there and throw his weight around a little. While we were speaking, it was as if they were dogs listening to us, and all they heard was "Blah, blah, blah, blah, Buddy Boy. Blah, blah, blah."
It's all too true. There are quite a few 'highly' verbal children in both of my boys different classes. Their teachers and aides are very experiences and do not make the same assumptions.
It makes all the prejudices of 'looks o.k./sounds o.k.' must BE o.k. so much harder for the child and those around him. We're back to that invisible bit again. Perhaps we need to distribute bifocals?
Cheers
There are many types of verbal ability. You sound like you have a good handle on Buddy Boy and the nature of his language. Good luck! My experiences as the (difficult) parent in IEPs has changed forever the way I handle IEPs as a teacher.
That poor car of Liz's---first the previous post's experience and then frozen diet root beer---
We've been on the "other side" things, with Charlie not having so much language and assumptions made about his (lack of) intelligence and understanding. Sometimes I think, in the scheme of things, he gets some supports readily (1:1, lots of speech, OT) that might benefit a child with more language "despite appearances."
Thanks for this post; it's one reason why I like the notion of the spectrum. Communication is never easy regardless of how much language one "has."
As we say here, Kristina- "high functiioning" and "low functioning" should not be used to deny service. All of these kids need support. They just all need DIFFERENT support. Why is there something wrong with kids getting what they need? I just don't get it.
Patrick is also pretty verbal and he's been mistaken as "high functioning" before. I guess if I had to label him I'd have to go for good old fence-sitting "moderate functioning". But that really isn't the point and it doesn't help him. We've been lucky with teachers this year but I'm going to have to take the special ed lady to school. She thinks Patrick will outgrow his needs for support and most likely assumes that because he's verbal he should be easy to place in a classroom.
This was the perfect post for me. You put exactly to words what I have tried to explain to my friends in the autism community who have non-verbal children. Sam had no words until 3, and has exploded since then with incredible school and private support systems. Sometimes I recall back to the non-verbal days and remember some things that were almost easier. When I try to explain that communication is sometimes harder for us now that he is more verbal, I am looked at as being ungrateful that he at least has some words. But...his use of the words he has, has actually alienated him more from typical peers because they understand him less. Before he was the cute little boy that had no words, so older typical children naturally felt inclined to care and help him. Now, they think he is "stupid" because he doesn't make sense and is "odd".
I needed to see your post today for a reality check. Just to make sure I am not crazy when I feel this way sometimes. Thanks!!!!
This also means that along with being verbal, since he is seen as HFA he is also expected to be "high functioning compliant"
YES! YES! Until Conor's recent school change under a teacher who also happens to be the parent of a child on the spectrum with sensory issues, this was a HUGE roadblock for us )and still remains a struggle in Sunday School). I cringe to think about what lies ahead next fall.
Thanks so much for visiting my blog. Looks like I'm adding all sorts of new friends to my blogroll. :-)
I really enjoyed the story. I'll send my wife over here to read it.
Thanks for commenting on my blog. I think you rock too.
Wow. I've enjoyed reading all the comments.
My aspie son was put on a 504, which means they've cut all services, except the social worker. This is because he is doing so well in school. I'm not kidding you, we were blindsided by this. Sat there at the IEP with my mouth open, saying to myself, "What just happened here?"
Apparently if he needs to get services, he'll get them right away. That's what they say. He's doing ok in school, academically, but there's the whole social thing, etc etc
We're going to enroll him in a social group at a university that's w/i walking distance.
I don't know. Part of me is still skeptical that they pulled services, even though they are raving about how well he is doing.
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