Monday, August 20, 2012

thinking about the future

Self-awareness is a tricky thing with some on the autism spectrum disorder.  For a long time, specialists thought that those with autism had no sense of themselves. That has been disproven: even some who are nonverbal now use assistive technology, usually a keyboard a specialized wordprocessor, are showing that they are aware of themselves, what they think and believe.   Ben doesn't want to share anything about himself...his excuse is, "I don't want to give myself away."  There lies the rub. For Ben to progress toward getting along with others, he needs to understand that he has a problem, and be willing to work through his feelings, all things he doesn't want to talk about or for others to discuss with him. At least that's what they tell me.
           When we have discussed autism and its effects with him, we get either no reply or begrudging agreement. He is so tired of counselors and specialists trying to teach him "social stories" and social behavior, that they have mostly learned to avoid those terms to get past the wall he puts up.
            Some parents of kids on the spectrum have told me that they tell thier kids from the beginning that they are different. Some parents teach thier children that everyone is different, and that the atypical nervous system with which they were born is no more of a difference than another person's hair color, likes and dislikes, etc.  Ben has heard the word 'autism' all his life; our family discusses the symptoms, likely causes, treatments/therapies, and the like. We just don't frequently direct the conversations to him.  I think he knows he has differences that make life challenging for him, but he doesn't want to dwell on it. 
             Maybe his realization is a process instead of a one time 'aha' moment. And maybe that's a good thing for Ben. It helps him cope internally with his areas of  struggle. But it makes his journey towards being a fully functioning, social adult harder, I think.
    

Thursday, April 19, 2012

Did you ever hold your breath, waiting for something unpleasant to happen, on high alert mode. And then nothing happens for a while and you start to relax a little. And still nothing happens. You think that maybe you were just oversensitive and that the event may not come. You let out your breath and go on with life........and....then it comes, BAM!  Why is it so much worse?
      For weeks I hesitated to look at the caller ID in case it might be the school number.  I avoided eye contact with the aid after school, hoping he didn't have a complaint or note to pass on.  Each day and week that nothing happened;which means things were going relatively smoothly, I relax more. I should know from experience that it's not going to last, but I revel in the good days.... until. BAM! Out of nowhere.  No warning that things are different. Ben came home the previous day and worked homework diligently for hours. We didn't know that he had been out of the regular class for the last three periods. But then, the next day, we got a note. So, not only had he gotten in a boy's face after lunch the first day, Ben had been warning a kid in homeroom that he better not mess with him. He admitted that the boy had not recently done anything, but he"couldn't stand it anymore". So the upshot was that he spent the entire day in "academic village"...at least it's not ISS.
And thus begins the long  haul to claw our way back out of the hole...the cycle of giving consequences, Ben being so preoccupied with said consequence that he is in a bad mood, getting in trouble because he is in a bad mood, giving consequences for getting in trouble, etc.  And the worse part is we don't know what started this.  He wasn't sick, or tired, or bothered in any way that we know of.  Something just unnerved him enough to make the sight of certain kids maddening to him.  Make him think about and dwell on something these kids did in the past, maybe a year ago.
In true Ben fashion, he admitted to threatening the one boy with throwing him out of school "when I become class president". We had to hide our smiles while Matt explained that Ben was not going tobe class president, because you have to get along with kids to get elected, plus, class president doesn't carry that power. I guess it was the only perceived power he might have to rid himself of his nemises.
But today we go back to the holding our breath......

Tuesday, March 27, 2012

dear teachers:

Dear teachers,
       My son, Ben is challenged with an autism spectrum disorder. That can mean many things, hence the word, "Spectrum".  He is what is considered high functioning, which is relative also...he can speak, understand speech, read, move effectively, and is a whiz at visual puzzles. However his social functioning level is probably five years delayed, and he gets excited about bugs, animals, and new Legos. He is sensitive about himself; doesn't like to talk/write about himself, has a hard time expressing many emotions. Ben has more fun with kids younger than he. Don't think you can give more than one direct command at a time and he will remember all of it, unless you make it visual. In fact, he responds to picture directions more readily than verbal commands. And, for ever more! don't tell him something to tell his parents unless you also write it down or make sure he writes it.
    Ben is very good at logics, finding hidden objects in a complicated picture; he could work jigsaw puzzles when he was two. He would lay out peices that were not connected by visualizing the whole picture before he worked it. He is musical to a fault. Let his sisters try to sing withhim, andhe stops singing....they are not in tune with him. He can remember the pitch of a song and demand that you only sing it in the original key.
        He knows kids make fun of him, even if you don't see or hear it happening. They know how to push his buttons....if they say, "cheese"....they know that drives him crazy, and don't ask me why. he has above average hearing when he is focusing on the source. It all depends on how motivated he is to hear something, whether he hears it or is distracted to some peripheral noise.
        He needs more time to process what he hears...lectures, questions, etc. Copying notes from the board is laborous, and taking notes straight from an oral presentation is nearly impossible, especiallyif  he is asked to only note what is important.  He's afraid he may be wrong...and that carries over to every thing.  Many choices will just frustrate him. Especially if you tell him there is no wrong answer. Because he just doesn't beleive you.  That's why creative writing is a nightmare also.  He thinks of too many things and wants to know which one is right.
    You need to understand that the way Ben is now is waaaaayyy better than he was.  He didn't call me Mommy till he was 3. We had to teach him words, one at a time...first nouns, for months, then verbs.  He threw tantrums because he couldn't communicate.  Screaming!  so if he growls at you, that's mild in comparison.  He seems so nearly typical, it's hard to remember that his brain is wired differently.
      His sensory issues have diminished over the years also..we had to vacuum when he was asleep. he went to his room when his sisters practiced instruments, and had to be forwarned of a firedrill or he freaked out.  he still doesn't like vacuum sound but he can tolerate it if he is warned. The sudden loud sounds still make him jump a mile.  He squints occasionally, but I'm not sure why; whether it's a reaction to light  or what.  Now that he is to have glasses for school, some writing issues may clear up. he has one eye with nearsightedness and the other has astygmatism.
         His sense of touch is off kilter. sometimes he is extremely sensitive, other times he can be badly injured and not even notice unless he sees blood.  He has had severe ear infections without our knowledge, but a paper cut can ruin his whole day.  Part of that is the obsessive/compulsive part of his disorder. He takes medication that is given to people with OCD. He also takes Ritalin.
        I have never taught in any school but preschool, so I don't pretend to know how hard it is to teach so many children at one time who have varying levels of understanding and differing learning styles. I can't even imagine.  You have my respect. Please just keep these things in the back of your mind and please don't treat my child like he is trying to make your life miserable on purpose.  He has very little thought for you, good or bad; he is too self absorbed.  He cares sincerely about very few people.  But that doesn't make him any less deserving of a good education.
Thank you,
a hopeful mother