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Location: Toronto, Ontario, Canada

Writer/Curator/Founder of The Autism Acceptance Project. Contributing Author to Between Interruptions: Thirty Women Tell the Truth About Motherhood, and Concepts of Normality by Wendy Lawson, and soon to be published Gravity Pulls You In. Writing my own book. Lecturer on autism and the media and parenting. Current graduate student Critical Disability Studies and most importantly, mother of Adam -- a new and emerging writer.

“There is no hope unmingled with fear, and no fear unmingled with hope.” -- Baruch Spinoza

Saturday, February 24, 2007

 

Acceptance, Appropriateness and The Whole Damn Thing

When I did that Podcast interview, I just found out that my mother had to go in for urgent surgery. She is recovering at home now and things look okay. I also work on a committee for the Jewish Board of Education here in Toronto (remember I am a convert, having gone through the public and the Catholic systems). This committee has a university course at York University to train willing teachers to work with all kinds of special needs children. We are also working to get more inclusion happening within the day school system here. When I said on Podcast that “at the end of the day, we do a lot of things for Adam,” we do. We, like many parents, have tried a few things at the beginning and continue to look at how we teach in addition to what we teach based on Adam’s needs: what issues are arising for him, what he is learning or needing to learn at school. I have never found a great “method” for Adam – a “one true thing.” I have found that for Adam, knowledge of as much as possible allows one to extract the best of the many approaches to autism out there. Adam is my guide. I have to work very hard (and I mean VERY hard), to find the right accommodations for him. Sometimes, I feel like a failure – that I am only human, have only so much time, and he needs me to work faster to find those accommodations. Other times, I know that as I plug away each day and study and learn more from autistic people, this is the best anyone can do.

As Adam approaches five, I feel we are at the edge of what we thought was going to be the end of “autism treatment.” When he was diagnosed early at eighteen months, other parents of autistic kids seemed envious, as if Adam had a higher chance of “recovering” from autism because of “early intervention.” Adam is hyperlexic. At nearly five, Adam cannot converse, although he can whiz through a computer learning program and has superior reading skills. So this is our scenario, in a very little nutshell. As Adam grows, his anxiety (the same anxiety he had on the day of his birth when he came into the world and did not sleep for thirty-six hours), still exists. But it is not all Adam. He is affable, extremely affectionate, charming, humorous, curious, active, and wants to be social even though this can be very tough to execute.

Our issues come from the anxiety and from other children who now can see that Adam is very different from them and who don't know HOW to interact with him, because this too needs to be taught to "typical" children. Last night, we went to our dear friends for Friday night dinner. They also have five children (I have four step-children and one of my own). Their children are all still young and live at home. The youngest, a girl, is Adam’s age. She is gregarious and LOUD. At least loud for a sensitive mom with an autistic son who feels his pain. I did not prepare Adam. He had a long day and when he entered everyone said “hi Adam,” with patience, but still overwhelming him. They love him. They have no intention to hurt him -- they were just being friendly in the "typical" way -- with "typical" language, which Amanda made note is invasive for an autistic person. Then, their HUGE dog approached, frightening Adam a little more. Adam cried and wouldn't let go of me. I tried to console him. He began to say “go!” and “away!” I took him upstairs to find an ABC book in a quiet room, but he still would not let go of me. He kept saying “away!” and I think he even said a sentence “I want to go!” The little girl came in the room, and because she is little and acts the way she should, still makes enough noise to frighten Adam. Henry came in, took him to the TV and Adam settled a bit. He made these throaty, quiet wails as he tried to settle himself.

As a parent who just arrived as a guest to our friend’s house, there are a few feelings I had. The first, because this doesn’t happen very often, but is certainly beginning to, I felt frustrated because everyone feels bad for Adam. They jump through hoops trying to be quiet so that he can settle down. I also feel bad for Adam, as he is clearly communicating with me that this is just too much for him -- he is saying with words “go,” and “away.” He is trying to get me to help him, while I try and persuade him to stay with potato chips and ABC books, none of which worked. So caught in between to worlds, I feel so terrible. Luckily, with television, Adam calmed down. When it approached eight-thirty, and he had to go to the bathroom but didn’t want to go in their bathroom (we have developed a little fright of bathrooms out of our house -- not autistic per se, but just a part of being a kid who has to get used to it). Henry had to take him home just down the street. When he got into his familiar surroundings, he was as happy as a "clam." (Are clams really happy?)

Perhaps it is this part of the autism disability that parents find difficult – having to do things because they are part of your lifestyle, and the other, because they are obligations. I didn’t make Adam sit at the dinner table, even though I wish he could sit beside me because I love him and want him there. I wanted him to feel good about being there – sometimes this needs a little more time. Why push him when he found his comfort zone for a couple of hours? I also know that with Adam, everything takes a little more time, a slightly different path. While our journey may be zigzagged, I can also say that Adam achieves more than I imagine some days – like tolerating a loud echoic gym to play Sportball on Saturdays. The instructor came to me and told me how proud of Adam he was – because in the beginning, Adam would cry as the noise was way too loud. Now, he has no problems with it and is so happy at Sportball. So, this is about hanging in. This is about developing a tougher skin as a parent when others do stare. But it is also about accepting the zigzag journey and discovering things you would have never otherwise discovered along the way.

Adam is a busy and pretty social guy especially in settings that he knows. He goes to OT, has SLP, and does some 1:1 therapy here at home, derived from play therapy. We teach skills within a text-rich environment with instructors even though he is able do many of those skills so beautifully on the computer. I want him to try and learn how to answer a question, as much as I want to learn how to understand Adam. As Amanda Baggs put it, I think speaking bilingually is a necessary skill for autistics, even if it is the unfortunate result of non-accpetance of others, or a misunderstanding of what autism is by society. My expectations of Adam's ability here, are I hope, still adaptive to Adam's style.

He goes to school now and I’m sending him to a school next year for SK with all kinds of kids with a shadow -- it isn’t a special needs school in particular and it took a bit of coercion to get him in. This summer, I’m looking further into FC and technology and will try to learn to scaffold Adam’s communication on the computer, as he may need a lapboard. I think, once he learns to read and write, he may become independent on the computer. I am trying to watch his skill-set and find ways of accomdating it.

All of this learning should be called autism learning for anyone who wishes to teach autistic people. It should be learning with autistic people, not learning how to teach in rooms without them. Learning how to teach in autism is dangerous when we use a medical model as a basis for teaching versus having to try harder to understand autism with autistic people, and marrying that with our skill set as teachers to what is already available -- a kind of filtering as it were. This kind of periphery knowledge of autism, or a "pathological" understanding of autism as a deviance from the norm doesn't help. Teaching is not about making someone they are not. Teaching is about helping someone and hopefully lessening their anxiety. It is about recongizing differences and challenges that must be dealt with while finding the abilities to work with. It is not about taking away the “stereotypy,” but focusing on these innate abilities indigenous to every autistic person so they can learn and grow into competent autistic adults. I am not holding up the bar of normalcy to measure this success. I really do believe that the gift of being human, and all the things all kinds of people can teach us, is immense if we work to listen.

Autism acceptance may be a little different for everyone -- some parents have more to deal with than others, and we need to find ways to both support autistic people and the parents who care for them. If an autistic person needs a medication for anxiety, it doesn’t mean you’re not accepting autism. If you use a tool to teach so that your autistic child can learn skills to communicate, that doesn’t mean you are not accepting autism. The difference between acceptance and non acceptance is rooted in a desire to fundamentally change the person who was born to you in ways that they cannot be changed. Persons with CP were approached behaviourally in the 1970’s with a “treatment” called Patterning. It held with it a believe that the person with CP had to crawl before they walked as this was thought to be an “appropriate” developmental milestone. This was very popular therapy back then, touted in similar ways as ABA is for autistic children today as needing to learn “appropriate” ways of behaving and learning as “developmental milestones,” – this concept that one’s learning course needs to be sequenced accordingly for success against the "normal" course of development. With many neurological and other disabilities, however, this fails. A child with a neurological disability like autism, downs, CP, cannot necessarily attain these “appropriate” developmental steps. Usually, I hear from some well-known researcher here in Toronto, that Adam does certain things now because he is at a two-year old level emotionally. I don’t buy it. He is a five year old autistic boy. He is an autistic boy who is part of my world, the way my family functions and has learned to adapt and interact in an autistic way – a valuable way. He has superior intelligence to other children his age. Yet, because of his innate autistic way of being, one school wanted to hold him back a year because he isn’t acting “emotionally” appropriate for his age. It may seem logical to parents while children are little. One year doesn’t seem like much. But the years pass, our children remain autistic, and the judgments don’t get any easier.

The other day at JK, I spoke to a grandmother of one of Adam’s friends, K, who has Aspergers. Apparently, they are forging a friendship of putting their faces close together during gym and they are very happy together. The grandmother told me that K came home and said “I’m a bad boy, but the other kids are good.” She said she was shocked – he was equating his worth with that of the other kids – the “good” kids who were not autistic. He saw himself, by comparison, as “bad.” If that doesn’t make every parent of an autistic child out there furious, it should. As long as we hold up this holy grail of being “indistinguishable” from others, our children will continue to feel bad about themselves, as the world thinks being autistic is inherently wrong.

It never ceases to blow my mind
It does it to me everytime
Standing here looking at you
It makes me wonder what he was up to
Was he thinking about me
When he thought about you
-- Keith Urban from Album Love, Pain and The Whole Crazy Thing

10 Comments:

Blogger Lisa/Jedi said...

That was very validating, Estee. We face many of the same issues you do, with visiting & school & life, & the resulting feelings you write about resonate with me. We are presently looking into voice-recognition software for our highly-verbal, 10-year-old Brendan because, although he is capable of typing & writing a bit, neither interface is fluent for him & neither allows him to produce the amazing work that he does when someone is scribing his words. We are lucky that his school is supportive of these efforts, because I can see another school making him struggle to be like the other kids (because he has some ability with typing & writing, & perhaps the potential, eventually to get even better at them) & conform to some ideal of "indistinguishable". I see this as a similar issue to accomodating variable levels of verbal communication, where we're fighting somewhat arbitrary labels of what is "good" or "functional" (definitely society needs to back off with these labels!).

I also agree that uneven development does not mean that our kids are the same "emotional" age as their physical functioning... Brendan can be very sophisitcated with his empathy & insight. He doesn't always know how to act upon these insights, but it's obvious that he has them. He has also had an extrememly uneven journey developmentally, which can be very puzzling for those who are working with him therapeutically, but also make him a very interesting person.

Thanks for posting this & keep sharing the great insights!

9:44 AM  
Blogger mcewen said...

Gosh, this is far too close to home for me - the learning with them is absolutely spot on. I know the exact same pivotal wobble between meeting the needs of your child and behaving in a socially acceptable manner in public, especially when the 'public' are pals who are trying so hard.
I await answers dearie. Cheers

10:04 AM  
Blogger kristina said...

It's a journey, is it not? And Adam is a great guide, for sure.

10:04 AM  
Anonymous Anonymous said...

Hello Estee!
You seem to be doing a great job with Adam, I think teaching him how to communicate with a computer is an excellent idea!
Regarding his sensibility to noise, have you tried using an anti-noise helmet (the kind used for roadwork etc.)? I'm not sure you can find some for children, but as he grows up he might find it convenient to reduce the noise level around him. I've been using one myself for half a dozen years: i'm not autistic, but I have a very low auditory threshold (I'm an amateur violonist, and my hearing is a great asset for such an instrument) and I have noisy neighbours (hi-fi, and not classical music). The helmet feels incomfortable when you wear it for several hours, so I usually place a pack of tissues between my head and the top part of the helmet.

11:12 AM  
Blogger jypsy said...

"For more than 40 years, patterning has been advocated in the treatment of children with brain damage, learning disabilities, Down syndrome, cerebral palsy and autism.
Patterning was "intended to "rewire" the brain. (sound familiar?!)

3:26 PM  
Blogger Peggy Lou Morgan said...

Estee:

Interesting that we are at the same place though I am there AGAIN because my son, Billy Ray, is changing with adulthood.

You are so right that it is hard work to adapt what works for our kids. The documentation system from my book Parenting Your Complex Child came out of that work. I couldn't remember too many things. I was amazed that at the things we caught and how much easier adapting.

Creating a community, including friends and public places, is a challenge but a rewarding one. I find that it helps to have a smaller community: for example only a limited number of friends who Billy Ray will be able to learn to be around (yes even the noise can become familiar if prepared and practiced), two or three restaurants not a different one each time or the same one or two grocery stores,etc., etc.

Thinking of your starting with young Adam, I am so wishing I knew what I know now when Billy Ray (now 24) was that little. You seemed further ahead than I was for sure.

All my best,
Peggy Lou

11:53 PM  
Anonymous Brian Henson said...

This concept of "holding back" a child in school for not being emotionally "mature" for the child's age is as old as schooling, itself.

Although neither my parents nor I had any idea that I was on the autistic spectrum (as I was not diagnosed until age fifty), the evidence of being held back is still there, in my memory.

Back in the early fifties, when I was five, there was no kindergarten, but, when I reached six, kindergarten was established. My parents were told that I would be advanced after the New Year (in January) into Grade One, but a nurse at the school would not permit it, as, according to her, I was not getting along with the other pupils, and my education was rolled back for that year. Even my parents at that time were upset about this, but could do nothing with the "system", as it was at that time.

Fortunately, this was just a one-time event, and after that, the various teachers and others in the local school system were very supportive during many of those hectic and anxiety-prone years. Sometimes I felt the only friend that I had was the teacher, as my peers would have nothing to do with me, except for taunting and teasing me, on a daily basis (often with vulgar language).

These teachers, in showing personal support, did give me hope, and a sense of self-esteem during these trying times, and I will always be grateful for them going beyond the strict requirements of their job at the times when they did intervene on my behalf.

12:08 AM  
Blogger Phoebe Gleeson said...

I am a new reader. My son, Bede, will be four in March and he is hyperlexic like Adam. He is undx (we homeschool and need no school services) but he is absolutely autistic.

I found you through TAAP as I was looking for alternate autism organizations. I am not a fan of Autism Speaks.

This is disjointed, sigh. My other children are needing me. I have to run! I just wanted to say hello. I will read and comment more later. Hopefully more coherently :-)

1:22 PM  
Blogger Just Ducky Knits said...

I have been reading your blog for quite a while, but haven't left a comment. I wanted to thank you for this blog, it really helped me move from being freaked out by people telling me what was 'wrong' with my son, to me being able to advocate for him and work for acceptance.

Your experience, except that mine didn't receive his dx as early, really mirrors mine so your posts were really relevant to me. Our boys are similar ages and mine is also somewhat hyperlexic and ahead in some cognitive skills, while being much younger emotionally and with a language delay.

Now that I have a blogger account you will probably see me comment more often. I hope you don't mind.

2:39 AM  
Anonymous Ann Marie said...

Great website! My son is now 18. He didn't really have communucative speech until he was about 10. He is now really gifted with his verbal skills. His receptive language is only grade one. I believe that it is an auditory processing problem from what he describes to me. He uses subtitles when watching TV or a DVD so that he can understand visually what he is hearing.

We have spent most of his life looking for the 'switch' in different situations. He progresses very quickly once 'switched on' to something. With speech, we found that by immersing him is his interests like trains and animals, he was so excited about the subject matter that he finally just had to start talking about it. I know that this is probably very contrary to the way we are 'supposed' so educate autistic kids.

I know that as a child learning was easy if it was something that interested me. Seems simple.

I took my son EVERYWHERE with me, but was always prepared to leave if he got too stressed. We always had a backpack of Thomas the Tank Engine trains, some books, snacks and beverages that he liked with us. My first step would be to find a quiet corner and set him up with his stuff. He always had a familiar place that way, and he could observe without having to join in. Other kids found it cool too because of his toys, so they tended to accept him even though he was really odd.

He is the most interesting person I know. Has been since the day he was born. I'm a geek myself, and it is a really funny bonus that I could always do stuff like visit museums and study a scientific fact to the point of obsessiveness with him. He was meant to be my son.

Those first 8-10 years are very exhausting, but keep plugging away. You have much to look forward to. Don't be discouraged about language, just keep focusing on words and they will come. I prayed for the day I could have a real conversation with my child, and even though he was never supposed to speak, I find him a much more articulate conversationalist that many doctors I have met who predicted the worst.

5:09 PM  

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