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.
    

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......

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

If there is a purpose

I am amazed at how long Ben sat at his yard sale table Saturday! Patience usually isn't his strong point, unless HE assesses an activity to be important enough.  After Matt and I helped him take his toys and books outside and set up a table, plywood on saw-horses, he sat in his chair(the one that's not worn and fuzzy against his neck) and waited for three hours while cars drove past him down the road to the neighbor's yard sale and then back up past him without stopping. 

Money is a definite motivator for Ben, mostly because he wants to buy Legos. There are sets that he has started that must be completed! But still I expected him to come in for a break at the half hour mark...hour...two hour. But no. I brought him a Nutty Buddy cone at eleven and told him that most yard salers stop coming at noon. After he ate his treat, he decided it was time.  We put books in a box to take to Wonder Book and Video, and toys in two different bags; trash and Goodwill. He never complained, not even when he gave back the fives and ones we had given him for change at the beginning.

At Derby Day on July fourth, Ben agreed to keep score of each race. With his notepad in his lap, positioned closer to the bottom than the top of the section of Main Street cordoned for the race, he wrote down the winner of each race...for four hours! He did have his chair...could that be a factor? It does sort of cradle him like a hammock, which has always helped him be calm. He ate his pizza, delivered to the chair, but never missed the results of a race. Three quarters of the way throught the event, when Thomas asked for his opinion of who would win, he said, "How should I know!". He wasn't being smart alec; he was confused as to how he was expected to know what was going to happen. He could tell exactly what HAD happened. That was fact. Ben didn't really like estimating in math class either. 

Ben knew we were probably going to stay for the whole race, since Matt and I were there to give out free water from the church. Maybe he figured he might as well do something to pass the time. But we have gone to the race most years,  and he normally didn't enjoy it enough to stay till the end.  He resisted making any social connections, even though in the past couple years there were drivers who were his age. But having a reason to watch each race he was content to sit there for four hours.

 Can I learn something about how to extend the amount of time he will be patient in a situation that doesn't have an obvious purpose for him or isn't entertaining to him?  It's hit or miss though, since I have to sell the idea as his own....

importance of music

Our home has always been a place of music: I can function better, I think, with music in the background if not the foreground. I sing going about my day or have music playing. Our girls have the passion and talent for instrumental as well as vocal music. Ben seems to be no different in that respect. We expect he has a better sense of pitch than we do.
I remember when he was just learning to talk(that took a long time, which I'll explain in another post), Ben at two would sing with me as he took his bath. I started out by singing "Old McDonald" and other preschool songs to him. He picked them up more quickly than he was learning to speak. He watched Veggie Tale shows which had catchy tunes. Those became some of his favorite songs to sing. One of his special teachers who came to the house a couple times a week to work with him told us a funny incident related to his singing. She was listening to her pastor one Sunday tell the story of Daniel being required to bow down to the idol. She almost started laughing because she kept thinking of , "The bunny. The bunny. Oh I love the bunny!", a line from a veggie tale song about the same story that Ben had repeatedly sung to her.
Ben doesn't usually want to sing with others or want others to sing with him. We often wondered if he just had sensitive hearing/sense of pitch so that when he sang with others he could hear the out of tune singers and it bothered him. Recently, he has watched(over and over and OVER) a video of instrumental music "played on" computer graphic instruments(animusic). One tune only was not written for the project and Ben insisted that he recognized it. So everyone he knew who might be musical he hummed the tune to and asked if they knew it. His voice is dropping into a more adult range at this time, so he was having trouble humming in the key in which it is played on the video, but he would not change keys to make it easier on himself. He sings it like he hears it.
This morning on the way to church he started singing words from several of our worship songs to one of the animusic tunes.
His music teachers have consistently reported that he can keep a constant beat; helpful since he played percussion for 5 years, only opting out of band this year to continue taking French( a story for another day also). Either he will incorporate music into his career or at least into his life as an adult I am sure.

and the journey began...

The longest document on my computer is the journal that I started soon after the specialists from Allegany County Infants and Toddlers Program told us that they were 98% sure that Ben had a form of autism: PDDnos, a wierd abbreviation for Pervasive Developmental Delay not otherwise specified. It begins something like, "A bombshell hit our family...", and it was an emotionally devistating explosion. Our sweet little boy, we were told, was going to need lots of extra help. But since he was talking even a little, they felt confident that with early intervention, ie; special teachers coming to our house, speech therapy, and even a special preschool, he would slowly gain more typical speech.

Ben had seemed a typical baby. He smiled, seemed happy. It wasn't until he was passing the point at which we figured he should be babbling, trying to say words, that we started to suspect. At 18 months, he wasn't talking. By the time he was almost 2, he didn't look when we called him by name. He didn't come show us things, reach for things, try to communicate much at all. Ben had a particularly funny habit of lining up small objects along the edge of the coffee table, and then moving each one an inch or so forward, one by one, like they were in a parade. Once they had all advanced, he got down eye level with the table to make sure they were all perfectly in line.  I had never seen that in a child: and I was a trained preschool teacher!
We had his hearing tested, as best we could since he was not cooperative or even verbal. The specialist felt his hearing was fine. At last, I took him to have the Infants and Toddlers ladies look at him. They were in the building where my girls went to school. They watched him in thier office, asked questions, came to my house to observe and even made another appointment for a school psychologist to observe him....That's when they ever so gently gave thier opinion...

Research! That's what I advise, because that's what we did first. Internet searching, asking questions, making contacts were the activities that kept our minds occupied until we could get our world back to some order. The more we knew about why he acted the way he did and what was being tried to  help others, the better we could help him and help others understand.
 We had two other children, our lovely, bright girls. How would we do what needed to be done for Ben without denying Erin and Elizabeth all the things we thought they needed and we wanted to give them.

Pray! At first the  prayer was a reactive, "How, God? Why? What do we do?"  And He didn't answer all those questions, but He didn't punish us for asking. He had already put in place many friends and family members who became supporters and cheerleaders for us. He also sent us along the way many compassionate and passionate teachers and specialists. Oh, there were the teachers who couldn't see why they should be bothered to try to understand Ben's outbursts. And every year we had to "retrain" a new teacher or new batch of teachers and administrators. But, every year he grew,learning and talking more.