Tonight Adam asked to be carried to his bed. “Carry!” he implores. He has a determined look in his eye. Usually, he climbs into my lap and expects me to carry him to his bed. So I let him again, and cradled him in my arms, trying not to hit his extremities in the doorway.

“Adam, you are getting too big for this now,” I say, my neck and back feeling strained. I carry him into his bedroom and plunk his heavy body on the soft bed.

“I’m not a caterpillar anymore!” he says melodically, and smiles.

“That’s right Adam!”I am pleasantly surprised. It is a rare lucid statement. With all his movements and chants, for the unexperienced, it is difficult to believe Adam is understanding, or paying attention to, many things. Yet I’ve always known he does, even on the days I get frustrated when he can’t respond.

There is a story that Adam The Caterpillar and the Polliwog by Jack Kent. He is using the line from that story and I know he has associated my discussions about him becoming a big boy to the story. “You are not a caterpillar anymore. You are a butterfly!” Adam lifts his head from his pillow. With a big smile, he plants a kiss on my lips and lies back down, contented. I turn out the lights and say goodnight.

I’ve been thinking a lot about Adam and his growth over the past year. Over the New Year, I’ve been thinking how this will be Adam’s first complete decade, and my first decade as a mom. I simply cannot believe that it’s been that long as I remember our journey with autism and with each other.

Adam was diagnosed with autism at 19 months of age and I began writing privately in coffee shops about our experiences when Adam spent a couple of hours in pre-school. I started The Joy of Autism blog and running the events of The Autism Acceptance Project when Adam was three years old. Reaction to my blog and title of the events (The Joy of Autism: Redefining Ability of Quality of Life) were met with both applause and contempt. Today, we read about the joy of autism and parenting an autistic child much more often. Then, parents who were struggling with challenging behaviours and expectations of a cure, challenged me. What did I know?! questioned many parents of slightly older autistic children who were being phased out of services. Wait until your autistic child grows up, then you’ll be in big trouble; you’ll see what we are going through. He won’t be cute forever! I suppose we’ve now reached that same stage. While Adam can still be cute, he is quickly becoming a pre-teen.

In the past decade, we have struggled with acceptance, understanding from others, and in finding a great education. We deal with stigma, and having to justify why we behave as we do. As parents, we are sometimes pitied or called heroes. It’s hard to be a normal parent in the “outside world,” even though autism is our normal. Having to justify our children, and their right, need, and desire to be included can be exhausting if not downright heart-breaking. We keep going out there every day as we brush disappointment off our weary selves. I suppose this is brave.

I also realize, that as bloggers, writers, and advocates, everyone has an opinion. When there is no one cause for autism that science can find, the speculation gets polemic. The nexus of contention seems to be the nature of autistic being and intelligence; is autism a natural, “alternative” way to be human, or is it a defect of the human condition? Of course, I believe it is what it is, although throughout the years I’ve always questioned my own thinking. I still come back to the value of human diversity. Whatever the reason or the cause, I value Adam for who and what he is, how he thinks. I also recognize and try to assist his challenges. I cannot call him a defect. He is whole, loving, able, with his disability. I can’t think of my life without him in it. He requires the extra effort of all to understand his differences in order to enable him. Being constantly challenged for my beliefs has been exhausting and emotional at times. The blessing of this first decade has been the deeper recognition and understanding of the values I held instinctively, and early on.

In the past decade of writing and talking about Adam and autism, I’ve been torn between sharing parts of our experience and our privacy. In the hopes of helping Adam’s future, I’ve seriously thought about whether or not to close the blog, especially since Adam’s first decade also included a divorce — a challenge for any child, and an extra challenge for Adam. I decided that not only does writing about experience help me as his mother, but that sharing is a gift we both give and receive. I was helped by the writing and sharing of other autistic people and parents. I don’t want to fear the sharing, although I’m continually challenged by this. Of course, it is my duty to protect Adam and his privacy, so I believe that every parent must choose our stories carefully. I’ve decided to continue writing.

I also can’t help thinking about the parents who had autistic children ten years before us. Many were the parents in Canada who argued for ABA to be covered as medically necessary treatment (the political argument still exists). Some parents found out about Dr. Lovaas in L.A. and even moved down with their children for treatment, and I may have done the same thing if Adam had been born earlier — maybe not. Adam was born in 2002. In 1992, ABA was turned to as the hope for the education and life skills training for autistic children. It was believed that ABA would be the way to shape the child’s behaviour and normalize them, in time for school. It seemed much more humane and reasonable than “holding therapy.”

The window in which to do this, they were told (and we were too) was five to six years of age. If a child could not talk or learn normally by then, the window of opportunity would close. The “early diagnosis is key,” notice, is also used for cancer, and I know from personal experience that yes, better to get a cancer early (another part of our past decade). Science, parents, autistic people, however, have proven that there is no such thing as lost opportunity. Autistic people need continued life-long learning. I like to think of that all of us require continued training throughout our lives to put this in perspective.

New methods and teaching approaches have been explored and integrated into many classrooms. ABA therapy has, to some extent, integrated different therapies into their own practice. By “operationalizing” these other methods and taking “data” it seems to have been rebranded as “Positive Behavioural Therapy” or “Support. While there is still controversy there because the therapy still doesn’t fully address the abilities and the nature of autistic perception and intelligence, one could view it as a step forward.

It is also difficult to let go of labels. Political policies are built on them. They are made for autistic people largely by non autistic people. Definitions and systems must be defined in policy, and this has been difficult for autistic people because their issues have not fully been acknowledged. So we must be cautious not to lose sight of the progress have made in the science regarding autistic ability, perception and intelligence. We must continue to work to answer the question on how we can best educate and address an autistic person’s needs, and how an autistic person can participate in society as they are. The dyslexic community had to learn and now so must we.

Ten years before ABA took hold in Canada, in 1982, Lorna Wing wrote her pivotal paper reviving the work of Hans Asperger and spotlighting Aspergers sydrome in her paper, Aspergers Syndrome: A Clinical Account. It was ten years after that paper that Autism Spectrum Disorder label and definition of the “triad of impairments” made it into the DSM IV. In thinking about decades, I thought back to 1972 when Ontario’s last mental institution was shut down. It freaks me out to think that Adam’s life could have been so very different thirty or more decades ago. He would have been even more segregated than he is today.

As I measure the decades against autism treatment, and treatment of autistic people, I see that in 2012, we’re learning more every day. We do so even in a perilous time when “designer babies” arguably threaten the continued existence of people with disabilities. Many communities like ours and the Down syndrome community grieve the loss of others “like” them as a loss of community. We’ve launched autism acceptance movement, akin to other civil rights movements, for the equal and fair regard of autistic people in our society. It is still a nascent movement of which most people are unaware. We have not accomplished full inclusion and accommodation. We still have not raised enough awareness.

As I think to 2022, when Adam will be twenty years old, I hope for the ability for Adam to continue his education and the welcoming of his assistants not because he is unable, but because he can be enabled with them. I want for his participation in his own life planning, pre-college/university prep, and vocational training that will be unique to the needs of him and others like him. I think of his life, like mine, as a continual learning curve — certainly not ending at the age of twenty one. I watch and read the other parents and autistic individuals ten years ahead of us, and wish to thank them for the paths they are forging.

I look ahead to the next couple of decades. There was a time I fretted about it until I realized that time is relative and all people develop as they should. I worried about Adam’s future and where he would live. Yet, I intend to hang in there with him, come what may. I had some very difficult moments after my divorce and raising Adam here alone and this is when my worries were at an all-time high. On one very low day, a calm and quiet thought suddenly entered my head, and it was filled with love. While autism may have brought me some of my greatest challenges, it has also bestowed my greatest gift.

I love Adam more than words. He has always been my pride and joy. I know that it is my duty to assist him, and to find others to assist him along the way who will help him become the man he is meant to be.

Maybe I just can’t believe he’s going to be ten years old this year. I turned on an old video when he was first diagnosed. He is twenty months and has the same smile, the same boundless energy. He is the same boy in a growing, lanky body. He is a butterfly.

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I am leaving for a trip to Sri Lanka at the end of this week. Travel is something I’ve always done, and now that I’m divorced, Adam goes to his father. I’ve always been a traveler, and Adam has been a traveler because of it. He has been to quite a few places for a little guy. I remember my first trip on an airplane was when I was nine years old. My grandparents took me to Germany for the first time. Adam is going to be ten this year and has been on an airplane every year since he’s been a baby. I always advocate taking an autistic child places, no matter where, with readiness and preparedness. I’ve always packed a special bag for Adam and I talk him through every aspect of our travel. These days I get compliments just about every flight: “I’ve never seen a child so well-behaved.” I want to laugh and announce, “and he’s autsitic too!” People don’t expect autistic children to be well-behaved on flights. Yet I’m working the entire flight by anticipating all of Adam’s needs.

Traveling is mine. It’s an interesting feeling — being excited to go halfway across the globe, being so far away from home in a completely different culture. I also know I’ll miss Adam as much as he will miss me. I will send him pictures of myself as I always do, prepare a calender of days until mom is home, and talk to him once in a while. These feelings do not stop me from persuing my interests now. I know I am a full-on mom with him and doing my best. I know that it is also important to let children go to manage their own feelings. It’s a good lesson to let children know they are not being abandoned — that parents can go out for dinner or on vacation, and will return.

I know I have to calibrate, to have this time to do what I love as much as I try to nurture what Adam loves. For some people it might be a hobby. For me it’s Wanderlust and food for creativity, writing and perspective, and even parenting Adam.

So I’m about to journey. I’ll miss my little guy, but as in a small of resemblance to mom Rahna Reiko Rizzuto, who wrote Hiroshima In The Morning, it is my need to fulfill the other bits of me that need filling. I really appreciated the way Rizzuto was honest. I feel the book is important in redefining what mothers are expected to do as opposed to fathers. She continues to be a good mom to her children — something the press failed to really discuss in the whirl of controversey — except that her arrangement is more like a man’s. She sees her children once a week and every-other weekend. I’m not at all suggesting I do not wish to be a mother by mentioning her book. I wanted Adam so badly and I continue to want to mother him. I think her book is important for women to read, though, in making sure that we don’t lose sight of ourselves.

A man would not feel so guilty leaving his child for work or travel. A mother on the other hand, feels compelled to write a blog post like this one.

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It is that time of year again when Adam and I spend a bit of time in Florida. Now a single parent, I get to spend a long stretch of time alone with him. There was a time that we spent this period as a family. I am no longer a part of that family and I am okay with it. As the perspective story goes, what we think of as unlucky, can end up as lucky. All we have to do is wait and see. Someone reminded me recently that I have received everything I have ever wanted: love, a family, friends and my child.

The past several years, I’ve been coming down to Florida alone with Adam; my parents often accompanying me for support. I didn’t feel I needed it this year. I am happy in life, now nearly four years away from separation and divorce. Over these years, I’ve taken on some guilt when I’ve had to be away from Adam. I’ve also felt loneliness when he leaves for his dad’s place. I’ve had to learn to accept my circumstances, and recreate a life for myself, and for both of us.

It’s hard to replace a man in the pool, though. I threw Adam into the air, not as high. My shoulders are paying the price. We have lots of fun, but I am not a man; I am not one of his strong brothers, friends, my boyfriend, grandfathers, or father who can toss him effortlessly. I am just his mother — the one he runs to and wants to cling to, here, on vacation. He seemed to accept my shortcomings in the pool. He was laughing at me and then wanted me to teach him how to do a somersault. It is nice to have this time together.

As the sun set over the ocean’s horizon yesterday, Adam sat contentedly in my lap, my arms around him. We sat for a long time and my usually active child just wanted me to hold him as we both looked out to sea. I dug my bare feet in the cool sand, and finally found them, as Adam’s mother, and his family.

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Every year I get asked, “what does Adam want for Christmas (or Hannukah as we celebrate both). I’d like someone to come and take a look at our basement and ask that question again. I’m about to divest years of collected toys and games that therpaists and teachers told us to buy; all in the hopes that it would trigger some reciprocal play or learning in Adam. The same is true for all children. Children are marketed to (and young parents) that every toy will give our children some developmental edge. While I do find many things cool and some even helpful, I believe autistic children are special targets to such marketing ploys.

This is what I bought for Adam this year:

Two 2012 monkey calendars — both identical so we can write out his week and he can predict his day. So he will use one at home and one at school.

One small game of tick tack toe because he is enjoying simple games now with others.

One book. An illustrated Alice in Wonderland.

No more. As I divest the things that we’ve accumulated over the years to clear out our heads, I am also trying to make room for creativity. We are so eager to see a typical response in our autistic kids that we buy, buy, buy. We don’t believe that boredom for the autistic child is as valuable as it is for the neurotypical one.

When I leave Adam alone, I often find him playing with a plastic monkey we bought at the jazz festival this past summer. Or he’ll pull out some favorite books or another toy that he’ll begin to explore. As Adam cries when he’s really frustrated, and after I’ve checked that he’s safe, I leave him to his own devices. I am trying to help him develop his own “struggle muscle,” and not rush in to save him. This helps him now to self-regulate, and it’s working.

It’s best to leave, says Kim John Payne, M.ED and author of the book Simplicity Parenting: Using the Extraordinary Power of Less to Raise Calmer, Happier and More Secure Kids, just a few toys and books on the shelf. It avoids stress and confusion. Store some away, and give away more. I know he’s talking about neurotypical kids, but he does make a lot of references to ADHD and learning disabilities too. As we think of typical kids so we must of autistic ones — we must believe that as Aristotle said, every person as an essence. We are all meant to become something by our intrinsic nature. We can’t develop that nature if parents constantly buy toys to entertain kids. They need to be left alone. Aristotle used the term “telos” to describe it:

“An acorn carries its telos within, from the beginning. Beyond our genetic gifts to them, beyond what they absorb from us and their environment, children seem to arrive with something of their very own, a telos, or intrinsic nature. The essential nature, apparent from the beginning, also points to their future, as an acorn suggests an oak. Our children come to us with a deep destiny — here again, some say spirit — that needs to be heard. It must be honored.” (p.33)

It all makes sense to me as Adam is an anxious child and the more visual noise or distraction, the more confusing it must be to even approach a toy and explore it. In addition to recently enjoying the monkey and books (Adam has a wide array of interests), he has taken to climbing on his bookshelf and swinging from the rope used for his OT swing — a sort of Tarzan manoever that takes me back to my own childhood. Oh how he has fun doing that! He made that game up on his own, with a high surface and a small piece of OT rope.

“Simplification protects the enivornment for childhood’s slow, essential unfolding of the self. You needn’t be a therapist to realize that most kids are quirky, aren’t they? The truth is we all have our quirks, our personalities and idiosyncrasies. We tend to be more tolerant of them in adults, perhaps because we think of adults as ‘fully formed’ and children ‘under construction’ and thus more malleable. Why simplify? Over the years, I’ve come to see how a child’s quirks or tendencies can be exacerbated by cumulative stress.” (p.26)

We have guests over tonight and Adam enjoys that. I’ve had a lot of people over to our home because Adam enjoys people and he’s in his familiar environment where he is able to relax and particiapte more than going to someone’s strange house. Tomorrow we’re at his grandparents like we are every year. We have a quiet Christmas, our small family. We just want to be together and we don’t need stuff to prove our love. I’ve moved from being an anxious parent to one who is really beginning to see how much Adam needs and enjoys my time. No thing can replace that. No thing can also replace what he imagines for himself.

Happy holidays to everyone. I hope you have a very simple and peaceful one. Adam and I will enjoy our New Year… giving our things away.

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I contributed to this book which is AVAILABLE NOW on Amazon.com.

Refreshingly free of dogma, disinformation, and heavy-handed agendas, The Thinking Person’s Guide to Autism is an oasis of sanity, compassion, and hope for people on the spectrum and those who love them. — Steve Silberman, senior writer for Wired magazine and autism/neurodiversity blogger for the Public Library of Science –Steve Silberman, senior writer for Wired magazine.

I can’t wait to get my copy and read the other essays!

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It has occured to me that Adam gives back. He’s not the only one in need of assistance. He and I, and all of us, are part of a network of give and take.

For many reasons this Hannukah and Christmas (or Fesitivus for the rest of us), Adam and I will be volunteering to assist families in need of food in Toronto.

Adam is affable, people love him, he puts smiles on people’s faces. More than this, he’s systematic and likes to contribute. Giving out food will be a constructive work for a nine-year-old who will be taking on his first “job.” I believe that we have to let our children learn and meet others who are part of the G&T network I referred to above. It equalizes us.

One mom the other day, of a younger autistic child, said she was self-conscious of going out with her child. I said that we as autistic families cannot ever stop going out and being part of the world. If we do, no one will understand us and there will be nothing available for autistic people. I thought this is a way for Adam to begin learning that he is valued and needed, as an autistic person.

Not only do we go out all the time and are part of our community, but Adam is not just on the receiving end of services. He is able to give back in so many ways.

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Review: Challenging The Myths of Autism: Unlock New Possibilities and Hope
Written by: Jonathan Adlerson
HarperCollins Publishing, 2011.
257 pages

I was more than intrigued by the title of Jonathan Alderson’s new book: Challenging the Myths of Autism: Unlock New Possibilities and Hope. In the last ten years, there have been a lot of autism books and memoirs released. My favorites have been ones written by autistic people. There are other favorites, Uta Frith, for example, Darold Treffert, who talk about autistic ability and autistic individuals in history. More recently books challenging theories about autism are receiving critical acclaim. Challenging ideas about autism indicates a massive change in the way we think about mental health and neurological difference. For my autistic son, the change doesn’t come fast enough, which is why we need more authors like Alderson.

Theories and anecdotal stories about people with disabilities, by the people who love them, have resulted in a move towards studying the value of cognitive difference. In the news recently, FRMI’s show that some people in a “vegetative state” have the same brain activity as typically functioning people when asked the same questions.  The science validates those parents who have believed for years (and criticized for those beliefs) that their children understood what was going on around them. Now fact rather than myth, the way we have treated these people has become society’s ethical question. The spotlight is turning on us.

By stating that there are autism myths, Alderson suggests that other facts exist – relative or absolute. There is not a lot of science in autism. Most of the science that exists is directed towards causation and treatment. New research is now pointing to autistic ability, not simply to cite the value to autistic people to our society, but also to derive a better education that is geared towards autistic intelligence, which society has a difficult time seeing beyond what appears to be severe disability and functioning. While Alderson is a clinician-first, and his observations are largely anecdotal, he cites this science and other examples. Mounting so many of these examples, which are supported by parents and autistic people, his points about autistic humanity and value become impossible to ignore. The autism myths Alderson challenges are those about affection (or the supposed lack thereof), rituals, socialization, scientific “evidence,” I.Q., the five-year-window, and imagination in people with autism.

Parents and autistic individuals experience lack of services and quality education because of misunderstanding and a perpetuation of myths which have misguided the treatment, therapy, and education of autistic people. Most of us are much too familiar with our daily lives punctuated by therapists and teachers only citing the deficits in order to “normalize” instead of teaching to autistic strengths. Autistic contributions and strengths, to date, have not been heralded enough because the disability can be very challenging. Many cannot see beyond it.

Alderson completed his Masters of Education at Harvard University and originally trained with the Son Rise Program in Massachusetts, although he is not promoting the Son Rise program or any other program in this book. In fact, he points towards a more well-rounded educational plan that accommodates the autistic person.

He dedicated twenty years and practice to working with hundreds of families. “The more children I met, the more diversity I saw,” he says in his book. “I think we sometimes forget that we are talking about real people, a population with a very wide range of strengths and challenges and personalities. How we talk about people with autism and how we characterize them impacts how we treat them.”

These beliefs, he states, like the myth that autistic children can’t share affection, led therapists to use holding therapies “where children are held tightly, often against their will, for hours at a time…. “Or the belief that the majority of autistic children are mentally retarded led to thousands being placed in mental institutions and pushed aside in special education classrooms.” The myths, he argues, “influence research, policy, treatment and our personal relations with people with autism, and they need to be challenged.” “Actively look for intelligence in the autistic population by removing barriers. Focus your mind and your eyes on ability,” he writes.

Maybe change is hard, and the reward too small for our educators, but I don’t think it’s a point we should give up on. My son Adam was diagnosed with autism at 18 months of age. I wish that books like these could have existed ten years ago. It would have been a much more empowering foray into the world of autism. I was one of those parents who began blogging in 2005 because from the get-go, I had difficulty related to what the “experts” were telling me regarding my son’s “lack,” which Alderson addresses in his book. They did not address the joy I felt when I was with him, or the happiness and tenderness he also exuded.

Parents need to hear what their children are capable of because there is far too much time and effort being poured into being told how deficient our children are. Millions of dollars get wasted into changing our children’s inherent nature instead of nurturing what is already there. All this money, and we ironically also have few places where our children can get an education. When children don’t become “normal,” parents can get depressed and therapists and teachers give up. Alderson quotes Carly, an autistic girl living in Toronto, who can’t speak but who types independently. Carly told a television audience, “Never give up on the children [you] work with.”

Alderson challenges the myths. Now we all need to work on redefining autism, and how an autistic person can be taught over the lifespan. I believe strongly that learning is a life-long endeavour. Our beliefs even about education ending at age eighteen or after university had more to do with getting people into the workforce in a era long past. With autistic people as well as all of society today, we are constantly learning and working at the same time. We need more talk about how to redefine the present and future for autistic people to contribute to society as they are. Also, we are just beginning to acknowledge the contributions made to society by the severely disabled, dyslexic and other disability communities. I believe the same can happen with our autistic one.

This book is an empowering tool for parents, teachers and clinicians. It is readable and accessible and may open a door that educators and others may open to provide better and more opportunities for people with autism. Hopefully we will continue our quest to understand the many attributes of autism rather than making a judgment that a difference in processing is a wrong way to be human. As myths are challenged and facts are sought through science, we don’t have to wait in order to treat people fairly.

Challenging ideas — myths  — is one of the most important endeavours of mankind. May we continue the dialogue for the advancement and successful living of all autistic individuals.

The story of Hercules (Heracles) grappling with the giant, is a case in point. Every time Hercules hurled Antaeus to the ground, he became stronger. Clearly this is what we might politely call a tall story. But maybe there is scientific logic behind it. What if Antaeus had some sort of magnet (if you don’t like the idea of a magnet, you can invent your own scenario) that made him stronger each time he hit the earth and weaker when held away from his power source? Hercules defeated another giant, Alcyoneus, only by pulling him far from his origin. The magnetic force of the earth was overcome in these examples by pulling far enough in any direction.

(N.S. Gill, Myth vs. Science, About.com)

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Adam and I went to see Seussical at Young People’s Theatre in Toronto. Adam likes the theatre more than he does movies.

I’ve always refused to stay isolated and Adam doesn’t like to be, either. He likes people and outings and even though we’ve been through ups and downs of anxiety, we tend to overcome our obstacles — our own and the ones that seem outside of us. But as usual, I digress.

Adam was his usual attentive self to the play. There were a series of questions afterwards and the theatre writes them out in the program for parents to work on at home. I also sent the questions to school today. I always wonder why there are not more field trips and plays for autistic children. Thankfully, Adam is going to the library a couple of times a week.

Many people don’t think autistic people understand or “get it,” and that taking them to a play or an outing would be a useless endeavour– one that would require too much effort, or parental fortitude and heartbreak to withstand stares. I’ve never been to Young People’s Theatre when a young person doesn’t make a whoop or two. Adam’s not yet a whooper, he’s more of a giggler. Perhaps because I see some parents of typical children sternly turn their disturbed heads (yes, my perception and interpretation…my bias), I refuse to look around. It’s not that I don’t want to. I’m actually thinking to myself hey, who’s the cool kid having the really great time!

Adam’s eyes were glued. His grin was wide, his eyes beaming. It feels so good to watch him enjoying himself. Since he’s been young, even though he has real challenges with expressive communication, he’s given me fantastic glimpses into his perception and understanding. His very attention to the play was proof- positive. Today he wrote me an email (the school lets him email me). One of his teachers asked him what he did on the weekend, not knowing the play at all. Adam replied by typing “elephant sat egg.” Horton was the guardian of the egg. He would not leave the egg or abandon the Whos on that little speck of dust in this mix of Dr. Seuss stories, no matter how awful and skeptcial the Wickersham brothers and other townspeople are to him. He endures the abuse, the naysayers, the people who call him a chump.

I know I have to keep working with others to show how to get more typed communication out of Adam and not give up. At the same time, I’m also thrilled that people are trying and doing. I know I need more patience. I worry and wonder how many hours in the day autistic kids are working on labels, mands and putting together Mr. Potato Head. Even though practice is always essential, and the goals are about attention and things other than the label or putting together a head, the work it takes to collect the expressive communication is big and we need to focus more on exposing autistic kids to interesting material, even when we don’t get immediate reward of a child’s recognition. I think our kids should be asked more complicated questions and working on really interesting age appropriate material. Of course, there’s also the fact that the stuff autistic kids are interested in can seem boring or useless to the rest of us. We need to learn how to nurture these interests. Also beware of objects that autistic children become attached to. Clinginess to baby books doesn’t mean an autistic child doesn’t want to read chapter books. I am reading Diary of a Wimpy Kid to Adam (he giggles), and have no idea yet what he’s getting from it. Although I do know, as but one example, that when we get wild weather, he’ll reach and start reading a book for teens on weather systems. The baby books are a form of familiar for Adam. He uses them to comfort himself and to create order in a world that can often be overwhelming. They don’t indicate what he’s also interested in, or what he’s capable of.

Readiness is essential but there can also be many opinions on what makes an autistic person “ready.” Is it the ability to sit still, act normal, attend for long periods of time? If so, an autistic person may never be deemed totally “ready.” If these are some of the prerequisites to “readiness,” how far held back is the autistic person who’s otherwise sopping up so much in the environment? Adam got his musical notation, to his music teacher’s surprise, very quickly. Learning to “attend” is a social “norm” imposed to people who find that really challenging. It’s not that I don’t think Adam shouldn’t learn that, but it’s not the only thing he needs to learn. Adam needs to learn things that interest him, and like other children, we don’t know what interests our children unless they get exposed to things. His movement and activity is likely the way he learns best, and despite my repetition in life and here on the blog, he is often treated like that round peg being squeezed into a square hole, no matter what my beliefs.

Help, hello. Is anyone there? I’m trying to write with the greatest of care. As I convey ideas about Adam over and over, we need to settle him down safe, on a soft bed of clover.

I guess you can say I’m holding on to this egg.

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Adam sits at the kitchen counter. I don’t have a proper table in my kitchen so he sits on a high stool at the counter, his chest meeting the edge. It used to be that his chin met the edge of the counter just a year ago. He’s grown.

It’s an early winter evening and the sun has gone just set. As usual before dinner, he’s eating sliced green and red peppers or cucumbers. “Vinegar!” he implores with a firm voice. His other choice condiments that go with everything are mustard and Tabasco sauce. I stand on the opposite side of the counter because I like to see his face, as if we were sitting across from each other at the table after a typical day. Even though we don’t have deep conversations verbally yet, we do have meaningful exchanges. I’ll ask “Adam how was your day?” and he might say, “It was fun.” Unless I bring out the typing devices, that may be it for our verbal social exchanges. He still needs prompting to sit down at his device and “talk” to me. I talk to him nevertheless and I’m okay with not always getting a reply back most of the time. We can discuss what he wants for dinner without the devices and he has chosen spaghetti this night. I am unpacking what’s left over from his Toy Story lunch box. He left the raisins, I sigh, and ate only half a sandwich. I continue to mumble about the uneaten parts of lunch and look at him. He searches my face.

“Ffffff…” His eyes turn mischievous. “Ffffffffuck,” he says tentatively, looking straight at me with a wily grin.

“What did you just say?” I ask, trying to be stern, but the way he looks into my eyes is something a parent with an autistic child doesn’t take for granted. I know I should be scolding him, but I am surprised at what I think I heard.

“Fffffuk,” he says again ever so quietly, now showing his big front teeth.

“Adam, what did you say?” I ask again. “I hope you are not using a bad word.” He’s still smiling the oh-yes-I-am, smile. I’m not pulling off my proper parental serious-face and tone well. I try to hide my laughter. “Adam!”

“Fick,” he changes his word deliberately and giggles. Shit, I can’t help giggling too.

And there it was. My nine-year-old testing out a bad word on his mom to see what she was going to do about it. So much for teaching my nine-year-old socially appropriate language.

:)

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(Photo Inset: Danvers State Mental Hosptial, Danvers Massachusetts. Credit: Ayslum: Inside The Closed World of State Mental Hospitals, MIT Press, 2009.)

“Autism is a growing burden on society in Ontario,” said Steve Hudson, co-chair of the Spectrum of Hope Autism Foundation. Mr. Hudson is promoting the Kae Martin Centre, a place that will house autism research and life-skill teaching under one roof. I kindly ask for an apology from Mr. Hudson for his unfortunate use of language.

As for the Centre, in one respect, it always sounds like it could be a relief — there are very few programs that adequately teach, or even recognize, autistic strength. On the other hand, when I read in our national newspaper, The Globe and Mail, that autistics must have a place to be sequestered to “learn how to cook,” shivers run up and down my spine. My son, and many others like him, can do more than learn how to cook.

There’s nothing wrong with learning to cook, or being a cook, of course. It is wonderful that there are places being created to learn the skills that autistic people need to learn. But in autism we do know that continued, or Life Long Learning is a must in the making of an autistic life and education. There’s nothing wrong with that, either. In my forties, I returned to university for my M.A. and I’ve been taking courses, and will, all of my life.

Autistic people and their families want to be a part of the community. Autistic people wish to receive accommodation and recognition as whole, valuable human beings. As soon as people present with a disability, odd behaviour, we automatically think of them as aberrant.

I can’t believe sometimes that I still have to write posts like this. I keep hoping that “autism advocates” will actually become educated by listening to the autstic population around the world, many of whom are considered “severely autistic,” but have learned to socialize and communicate by typing, for instance. I am so despondent, admittedly, when I hear that the use of terms like “burden” are ways to appeal for money. What about accomplishment? What about the many autistic individuals who contribute right now? Could we be achieving more for our autistic children, young and old?

We are so behind other disabilities that were once viewed the same way — children were segregated, treated as dumb, assessed as unable to contribute anything to society. Later, such as in the recent HBO Journey Into Dyslexia, these same “children” are now talking about how their disability has advanced society itself. Many of our technologies that we use and take for granted today, were invented for individuals with communication disabilities.

As I read the article, the first thing that came to mind was what kind of research would be housed under one roof? Will it be to understand autistic thinking, processing and ability? How to teach the autistic person? Or are the same founders duped by the ABA is the only scientifcally proven therapy for autism myth? It is not scientifically proven. It simply has the most scientific research behind it. as Jonathan Adler states in his recent book, Challenging the Myths of Autism, “the most evidence does not mean the only evidence.”

I have to be honest. I have mixed feelings of putting Adam in an ABA school. Sure, everyone is nice and so far it’s eclectic, so for us it’s the best out there. Even writing about this, and I feel I put ourselves at risk for displacement where there is really no where else to go. Yet, I have to be honest in hopes for more services for us and every other autistic family out there. I think a civil dialogue about the issues pertaining to autism and their therapies and education is the best way to progress. I do this with Adam’s current school and it’s going very well. I also see that Adam is calmer and happier there. The staff is friendly and organized and have been so helpful to me. I do wonder if there is far too much time be wasted on baseline protocol — testing things Adam has known for years, and I worry about falling more behind. It’s too soon to tell and I’ll report back. From the other point of view, Adam has to get more “fluent,” and I don’t disagree that practice is important for Adam. It is my opinion that Adam’s disability is not fully taken into account by all schools, ABA or not — his catatonic-like movement and inconsitency. This school that I have Adam registered in, however, does teach him what I want them to, like literacy and typing, but of course everything in ABA becomes operationalized. All other methods tend to become ABA methods, even though they didn’t start off that way. What an autism school can do for him right now, where there is such a lack in Ontario, is provide him with better understanding and structure. They also have the ability to help us with some of the more challenging behaviour that arises from time-to-time, and seem to treat Adam with respect for his anxiety. What I am trying to say is that many methods matter and have to be included in the curriculum and in some settings I see this being incorporated more. I am always sending emails about understanding Adam’s behaviour and treating him with respect. I often wonder when people will become sick of me. But I cannot stop. There is a part of me that knows that we all have to work with what’s already out there.

Throwing him into a school with others where there was no such understanding and for Inclusion sake, didn’t work for Adam at this point in time. His current school is willing to deal with what I want for Adam, while making other suggestions and I’m willing to give it a try now that he is older and the method could be more suitable to him. Overall, though, an IEP for an autstic child must include life skills, academics, communication and social skills training, among so many other things. Adam is lucky to have all this and we are always asking questions about priorities and balance. Each autistic child’s needs are very different. What I want is for Adam to be accommodated for these needs in all settings. Adam enjoys his peers, but peers are not taught to accept Adam after a certain age. Adam isn’t viewed in these settings as someone who can contribute. He’s viewed as someone who needs extra help. That someone who needs extra help is viewed as the burden. So I’m worried just about every day. I want Adam to be safe, happy and learning. He wants to be out of the house and with others and he typed a couple of weeks ago “I want friends.” How do I ensure that he is being included in society, programs, and where he also wishes to be? How do I ensure he doesn’t become so bored (because he has a curious mind), because he can’t respond consistently? It tears me apart.

So when I hear of Autism Centres, I get a mixed reactions. I want Adam out and about safely, and he comes out and about when he’s with me every weekend. I get queasy that Centres, and the lack of enforcement of Inclusion Policy in Canada, will continue to force us away from our community, and we become more isolated. I spend hours trying to find activities for Adam where is is happily included with an aide, but it seems to be getting more difficult. My mind is haunted by images of insitutions, even though the last one was closed in Canada in 1972.

We tend to think of mental hospitals as snake pits, hells of chaos and misery, squalor and brutality,” says Oliver Sacks in his introduction to Asylum: Inside the Closed World of State Mental Hospitals. “Most of them, now, are shattered and abandoned — and we think with a shiver of the terror of those who once found themselves confined to such places.”

“Like so many lofty ideals, the asylums failed to live up to their expectations.” Asylums were supposed to be places where disabled and mentally “ill” individuals could learn life skills, do art, create community. We all know what happened to these facilities and the levels of abuse inside of them.

I dream of autism schools somedays, ones that are as well revered as schools for gifted children (as many of our children, once they can start typing can end up there). I dream of Adam being included safely and accommodated in a public school where he is accepted and respected. I dream of people talking of autstic ability seriously as part of autism, not as an anechdote to autism, for that’s just another way of writing autistic people off. On the other hand, I am worried sick about the fate of Adam and where I place him every day. Is he really learning enough, to his abilities? Or are his deficits the only thing that will ever be the target in his IEP? How much time in a day does this single mother have to defend, program and place him?

I want to be happy about a new place where Adam is viewed as someone who can make it, who will contribute, who is intelligent. I have a dream. I know that typical people don’t think they need to care about us or where we will end up. Yet if you really think about it, it is our greatest lesson in the study of humanity. Our growing disabled population challenge our views and the way we treat others. In the words of Michel Berube, of the popular memoir about his son with Down syndrome Life As We Know It: A Father, A Family, An Exceptional Child, writes in his introduction to Simi Linton’s Claiming Disability: Knowledge and Identity about the field of Critical Disability Studies: “I now believe that my resistance to disability studies is a piece with a larger and more insidious cultural form of resistance whereby nondisabled people find it difficult or undesirable to imagine that disability law is central to civil rights legistation…as Simi Linton shows us [Critical Disability Studies] should be central to what we do in the humanities. And perhaps, just perhaps, if disability is understood as central to the humanities, it will evenutally be understood as central to humanity.”

The weight of our morals and ethics about how we treat and regard autistic people may be our real burden. So I guess I’m back at the blog, here, defending our right to be smack dab in the middle of our wonderful city, hoping for Centres and schools that will celebrate the lives of autistic people, their strengths, ability and potential. All I can ask, is to please see us as fully whole, not broken, human beings.

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I haven’t written in a long time. Since we changed schools I decided to focus solely on Adam. I’m also very cautious of what I write about, because while it’s important for me to do this, it’s important to protect Adam’s dignity as he is maturing fast.

We made the official switch to an ABA school. Frankly, it was getting exhausting trying to find an inclusive school to support Adam’s needs. Adam needs understanding, lots of structure, lots of practice for the work that’s difficult for him, and people who greet him every day with a wide smile. I have been struggling on how to write this because I’ve been so critical of ABA. I have come to peace with this decision for now. We didn’t have good early experiences. I’ve learned that it’s not just some ABA therapists who didn’t accommodate or treat Adam with respect. Understanding autism, accommodating, accepting isn’t reserved for the non ABA teacher. Maybe times are changing.

Adam has Occupational Therapy equipment and goes to the gym every day at his school. He gets his sensory breaks. He uses a Vantage Lite and now the iPad — from the notebook, to text-to-speech for typing, which he is doing more independently. He also enjoys using the Vantage Lite. Adam also started using the Vital Links headphones which help him be able to calm his body and sit at a desk and do work. This works by choosing various MP3 music chips. He can sit and work and still hear and listen to his teachers. It’s a much better option than the Ritalin we once tried in his other school — a nightmarish experience.

After June, Adam went also to a new camp. We lost our aide worker of seven years. For the first time I had to let Adam “go.” I had to learn to trust that others would treat him well and I had to trust that Adam would rise to the occasion.

He did, although his new obsession with exploration and doors took over. He typed to me in the summer that “door is a question.” A question so powerful, in fact, that sometimes he seems to have little control over his insatiable curiousity.

We incorporated exploration time at the end of each day, with supervision. He was still adored at his new camp as he was at his older camp. Both camps are fully inclusive. He needed a bit more support after incidents at the end of his the year at his other school. I called the summer “operation calm down” as Adam was highly stressed and the door obsession began. As the summer unfolded, he calmed. By the end of it, his ability to speak reliably soared in ways we had not yet experienced. He was relaxed and happy and of course, we always try and type a little more each day at home since he got his iPad.

This was the biggest change in Adam’s communication — his verbal ability increased and between typed and verbal, I could trust that what he said, he meant. Instead of echoing or saying things he learned elsewhere, Adam began telling me real things and he still does — from how he is feeling, to what happened to him, and what he does and doesn’t like or want. Some days I will get an interesting full blown description of something I didn’t quite ask for, with language full of imagery that I have to interpret, which gives me clues into the way Adam sees things. I have asked the school to verify things I do not know, in order to test myself as Adam’s communication partner. I am always trying to ensure that I enable Adam by testing myself and watching for his cues. I am a work in progress.

Adam writes emails to me every day — something I still insist as part of reciprocal communication (and a safety necessity in my view). Yesterday, he independently wrote me that his tummy was sick. I had to call the school to verify and the senior therapist ran down to check on him. “Isn’t this a wonderful call?” I said. Sure, my son could have been barfing, but hell, he could tell me! Adam is assertive when he can speak. I can see more clearly now that he has a fighter spirit.

Yesterday, Adam was unusually upset in his OT appointment and I had to intervene. I brought in the iPad and he typed “I want dinner!” As he typed, he said the sentence before he finished typing the word dinner. When Adam is anxious, like so many autistic individuals express, it can be harder for him to access language. Sometimes it’s not, so there are no clear cut “rules” here. Yet, as soon as he was able to have access to the device to type, he immediately calmed down.

The same thing happened this morning. He was quite upset. I brought out the iPad to type on the text to speech application, which he really likes. I asked him if he was feeling tired or sick. He wrote back, “No school because I tired.” He smiled because he obviously feels more empowered when he can tell me what he really wants to say.

I get asked a lot from parents on how I taught Adam how to type. Believe me, I was criticized by people who believed that supported, or facilitated communication, was a hoax. I simply kept it up (I started when Adam was around four years old). Now Adam can type unsupported most of the time. My priority with his school is following up with is literacy and unsupported typing. At home, we play poetry games and type in the nuanced ways that are difficult to explain without writing it out in a longer essay or post. It is always best to see Adam and I doing this a few times to see how varied it can be.

Today, I promised myself I would write again, and I’m enjoying writing about Adam’s writing, which is much more interesting than mine. Sometimes I feel that I am climbing a never-ending mountain when I say it is Adam’s neurology, not behaviour, that make it difficult for him to communicate and do tasks consistently. So I stopped writing and talking for a while and just lived our lives. This is one of the reasons I had to take a break. I needed to be with Adam, go through all the changes, and just be.

So far, I like what I see as Adam happily runs to the school door every morning. We went through some difficult days with certain ABA therapists when Adam was a baby. It is now, as he’s older, that I see that consistent practice is important and helpful to him, as well as a structured day that he can predict and have some control over. For Adam, I am still convinced that the early engagement was very important through a play-based method. He always had a combination of methods that are currently out there. Being with other children was wonderful. I wish he could still be with all kinds of children, of course, especially since he typed a couple of weeks ago, “I want friends.” But when schools do not fully understand and accept autistic kids, I had to pull back and ask myself where Adam might be treated better. In this case, he’s in a place where the staff seem open minded and we work together on planning Adam’s programs and various teaching methods. Adam’s extracurricular activities include now skiing, a Friendship Club, piano lessons, and an art class.

I am hopeful because I know that Adam will progress because of maturity and because of finding the environments, support and methods that best suit him, and these may or may not change. I am also hopeful for myself that be it good or bad, writing and talking about Adam in respectful ways is still very important to how I support myself as his mother. Both Adam and Estee find writing really important, and I know Adam would tell you so.

Every parent has a dream and an expectation for their children, and expectations never quite turn out how we envision. I always had a dream that Adam and I will tour around and he will be able to tell you many things on how he grew up and learned all by himself and I can talk about the journey I took to try and help him. I can imagine Adam and writing to each other, because that’s what we are doing! Maybe soon I’ll find the energy to show you. I believe Adam the fighter will want to show you for himself.

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The gods had condemned Sisyphus to ceaselessly rolling a rock to the top of a mountain, whence the stone would fall back of its own weight. They had thought with some reason that there is no more dreadful punishment than futile and hopeless labor.

I heard this term used by someone today. It is often used in ABA-speak — that every minute of every day must be a form of “therapy” for the autistic child. Some believe this is necessary because there is a belief that autistic children are not learning unless they are doing it in a way that that we can understand…measurable. This made me think of Sisyphus and the futile attempts we make in trying to normalize an autistic person.

The truth is, we take comfort in measures. Yet as I wrote in my essay/presentation The Mismeasure of Autism, we cannot hold autistic people up against the same measures as we do of people with typical people. Not all brains are wired in the same way.

For example, women have quickly discovered that when we compare ourselves to men in the workplace, or try to behave like men, we fail. In pretending to be like men, we can undergo a great deal of stress because we are working against our nature. When we are valued for the manner in which we can accomplish the same tasks as men, but in our own way, we discover that our differences can be beneficial to the workplace. Women to men are as autistic people to neurotypical ones: different and equal.

I was reminded of the contributions of those who are different from the film titled Journey Into Dyslexia, which profiles accomplished people with dyslexia. The trailer can be seen by clicking here.

During the film, dyslexic individuals describe their trauma with the education system — how no one appreciated the unique wiring of their brain and tried to make the dyslexic students learn like typical ones. I was so saddened by the life-long adverse effects this had on them.

In another segment, a researcher discusses how dyslexic individuals have unique abilities and pattern recognition and explain that our world would not be the same without such thinkers. This reminded me of the research being done which shows advanced perceptual ability in autistic individuals of all functioning levels.

It should be said that in the film about dyslexia, individuals do not appear disabled. In autism, this isn’t always the case. While some individuals do not physically appear different, others are distiguishable by their various eye-gaze, facial expression, gait and idiosyncratic body movements (which serve most often to regulate or feel the body in space), referred to as self-stimulatory behaviour. I thought to myself that in our (still) disabled-adverse society, it is easier to accept dyslexic people, that is, sadly easier to accept people who do not have any obvious appearance of disability. Yet, dyslexics did not always have the same recognition and status. Dyslexic students were labeled and marginalized — called stupid — and not much was expected from them in the future.

Time changed that. Studies of the brain and achievements and activism by dyslexic individuals changed it too. So I had to wonder, as I always do when I watch such movies, why it is taking so long for the autistic community to receive such recognition and access? There are scientific studies that demonstrate advanced perceptual abilities, patterning skills in autistic individuals despite the labels of “functioning levels.” There is anecdotal evidence that autistic individuals are exceptional employees — reliable, honest, able to do detailed and repetitive work, and perhaps even able to design world-renowned facilities (think Temple Grandin).

Still, we as an autistic community (meaning parents, researchers and autistic people) tend to discount the mounting evidence. While I don’t wish to go into yet another lengthy about high and low functioning labels, but I will reiterate that they are unreliable in determining intelligence levels. Not all intelligences can be measured the same way, as demonstrated by many of the neurological differences which now have labels out there. This is also explained brilliantly in the film.

We can learn from our fellow disability communities. We can turn to ones, like the dyslexic community, in learning how to advocate for autistic individuals. We can definitely acknowledge that it is natural for the human speicies to have differently-wired brains and that these “different” brains are integral to the survival of our speicies (watch the movie for an advanced argument on that point).

That is the reason why the idea that “every minute should be therapy” for the autistic person is a form of discrimination. Underneath the premise is the idea that autistic people need to learn and act like those who are different from them. I cannot imagine the anguish of that experience, and every day I try to feel what Adam must have to go through and what he may come to say of it when he grows older.

Before the hyper-programmed generation (that is, my generation), we had many bored moments when our parents let us figure out what to do on our own. We stared at clouds, talked to ourselves and created laboratories out of our mother’s cosmetic bottles and the contents therein. When I look back, I remember creating many imaginary worlds. Adam’s chatter is considered abnormal to many behaviourists, although I’ve never stopped him. I’ve now learned how valuable that self-chatter is to autistic children for language acquisition.

Compare the way we let typical children play to the existence of the autistic child today. It is said that autistic children can’t learn on their own, let alone imagine, without our intervention. Autistic free time is not valued. Autistic nature is not valued. Autistic learning is not valued and the autistic person is more often than not, underestimated.

I tend to use the story of how Adam taught himself how to read and count in an argument such as this. A more recent example I would use is how he has taught himself how to search for what he wants on the computer. You see, those are the things we see and measure, but I wouldn’t be able to determine how he came to do it. I can’t measure the exact process he went through. I can wait until he is able to explain some of it to me, unscientifically maybe, and I am certain now that he will as his verbal and typing skills catapulted again this summer along with his long days in the fresh air.

If I had turned each and every one of Adam’s minutes — nay existence — into “therapy,” not only would I become completely exhausted and dismayed, but I’m quite certain that Adam would not be has happy and as well adjusted as any young autistic individual can wish to be. He will have his complaints, I am certain. He is up against so much more than I have ever been.

I am thankful for my attitude of late and for the balanced approach that time and experience has given us. It is not always easy to maintain this attitude consistently in our community where autistic children are not taught to their needs or potential, let alone accepted into many schools and taught well. For many autism parents, it is the fear of the future that is the driving force behind the idea that every moment needs to be a therapeutic one. I completely understand that fear.

It is in these very moments when we need to turn to autistic adults and call upon all of our autism societies to spotlight the achievements of autistic individuals of all functioning levels, and their contributions to society. In autism we have Temple Grandin, Vernon Smith (Nobel Prize Winner), Stephen Wiltshire, Daniel Tammet, Donna Williams, Michelle Dawson, Matt Savage, Amanda Baggs, Larry Bissonnette, and so many more autistic contributors. In so many of their stories, we have heard how they have learned and achieved by virtue of their autistic brains and societal accommodation, not from minute-by-minute therapy.

We should do everything to celebrate the achievements of our comrades, as this will enable better services and accommodations for the next generation of autistic people to contribute. If we do not stand up for our own community, what chances will our children have to prove themselves? What chances for acceptance?

Everyone has something to contribute.

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Impromptu memorial today at Toronto’s City Hall:

Click Here to read his Letter.

One of his favourite songs:

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“Ma…. M. Ma… M. ” That’s what Adam said to me last night before bed, before he woke with a fever this morning, no doubt having caught the summer cold. It also happens to be Toronto’s record-breaking heat wave. As I wandered in his room with my early morning “gotta wake up” voice, Adam seemed woozy. I sat on the side of his bed and felt his forehead and body. He felt like an oven. There is not a day when he’s ill that I don’t want to take away all his aches and pains.

Last June was a difficult month of transitions — heck the last three years have been full of them. I find it difficult to write when we are going through something because I have to process a lot of my own emotions and ways of looking at life. My convictions are tested. I’ve learned that I’m glad I have some.

Losing an aide worker of seven years, another change in school, a new camp…Adam demonstrated his distress with an obsession with looking behind every door which lead to bolting. When Adam is anxious, his body twitches and he started to lightly nibble at his arm, and sometimes mine. If I had to describe it in my own words and perspective, it was like Adam had to explore everything as if it was a flight response. I would say that this was all about fear and uncertainty. He will able to tell be better when he is able. He is getting more able as he types more to me.

At first, I did what any other parent would do and asked him to stop. Drawing attention to it made it worse. When Adam goes through a state of anxiety, it is hard for me not to as well…like his illness, I wish I could take it away — all his pain. I wish it would stop. As a single parent, I take on the brunt of it too. My parents are a wonderful support system for me as are the people closest to me, but I take so much on emotionally where Adam is concerned. It is sometimes so overwhelming, and I find myself strewn across my bed when he is asleep wondering how I can go on. I find myself in that futile trap of worrying about the future.

Then something clicks. I think of Adam as a person, as I think of myself as a child — all of my fears and needs. I needed my parents, my mother especially, when I was scared or sick. My dad embraced me the times I least expected, like the break up from my very first boyfriend. My mother took good care of me while my dad taught me some lessons about brushing myself off again after life would offer its hits over and over again. I’ve learned that happiness is not a given. It is a gift. Life is about the struggle so it might as also be about how we handle it. I need to show Adam that I am as strong as he will be. He needs me to be.

There are times when I think it so unfair to bring children into a harsh world. I wonder, as Adam will have to struggle through life the way we all do, why I did this to him. Yet nature was stronger than this logic. I wanted Adam as much as I needed air. I cannot imagine life without Adam and without having this level of love and responsibility in my life. Sure, I’m not unlike everyone else that I also imagine freedom. Yet, now that Adam is here, it’s not as important. This is what I made, and what came my way, and I want to make the very best of it.

When I woke up that morning and everything clicked together again, I remembered that we’ve gotten through a lot of phases. I remembered Adam’s smile, even though he wasn’t smiling that much in June. I remembered how much he loves and needs me and how I am fit for the calling. I may have to lie exhausted, strewn across my bed some days, but I know as long as I’m alive, I’ll get right back up again.

Since his new camp began in early July, the twitching abated as did the nibbles on his arm. I learned not to call attention to it, and to provide him with more soothing activities, while teaching him how to soothe himself. Adam uses a steamroller — purchased through Southpaw Enterprises — as a “squeeze machine” which provides him with the deep pressure he seeks. As several weeks have passed, he is more verbal again and the smile is back, even in his latest group camp photo. I try to rub his back and tell him that I understand when he’s frustrated, and he appreciates it.

Adam’s ways of communicating are so diverse. He has motor planning issues, apraxia and catatonia-like initiation issues. These are not motivational in the least. These are real impairments which need understanding and creativity in order to help Adam become enabled.

When people also think that Adam doesn’t understand, I want to show what he can do on his iPad or computer. He is able to demonstrate his ability to answer, usually one hundred per cent on comprehension exercises, with a multiple choice format. I asked his school to do that last year and he was able to answer questions better this way because it is a visual prompt — he has to choose from one out of three of four possibilities. Another way to see this is through his iPad. There are programs (you can start with “Playwords”) that ask children to pick the right word to match the picture or the verbal prompt — some of the words are getting sophisticated. Adam can zip through that exercise like it is nothing. Yet, give him another format, like fill in the missing letter of a word he knows very well, he has some difficulty. He needs me to model several times, the correct way to complete the exercise. Then he’s flying again.

After a couple of weeks of camp, a video of the end of the day “Flagpole” was sent to me by email. I always wonder why Adam points to his favorite activity being “Flagpole,” everyday. It is an end of day camp activity where the entire camp gathers together. In this video, counselors were demonstrating a dance and all the kids had to follow. It was boring at first to watch the counselors on a roof dancing to warbling electronic music. Then, the camera panned out. Suddenly, a small figure to the bottom right looked familiar from the back. I recognized the beige floppy hat and the lean body. It was my Adam following the dance moves and I could tell he was intently watching. It looked like he was having….fun. I was so happy, I forwarded it to all my friends and family. It was indeed the gift I have learned never to take for granted.

Today Adam sleeps in my bed and he needs me around to take care of him. I’m stuck in the house, but I know he needs me, and he loves me. He has just woken as I get up from the other side of the bed. “Stay here,” he says. Don’t worry, Adam. I’m not going anywhere.

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Please read Kristina’s and help return Ayn, an autistic girl to her father. They live in British Columbia. Ayn has been taken because of wandering.

Like Ayn, Adam is nine years old and has bolted. We work so hard to take care of and nuture our children and Foster Care is a devastating option. Ayn’s father Derek fears that Ayn is being drugged to sedate her. It may take up to a year to get Ayn back, states Derek’s laywer. Let me describe why I believe this is discrimination against autistics and their families.

As a parent of an autistic child who clearly is anxious about the world about him, which lends to wandering and other behaviours as I’ve observed, I can think of no other person on this planet more equipped to protect my son than myself and his immediate family. We live in a world that wants to make Adam “normal.” He must go to school, and when he goes, he has to exert more energy than other children just to cope. Because Adam is barely verbal, but otherwise very bright, he cannot speak out. Instead, he reacts.

Our schools, while they attempt to accommodate, simply have not been making the grade. As I’ve researched school options and program options in Ontario, our options are few and far between. Every program seeks to normalize Adam. Precious few wish to spend the time it takes to see his abilities and build upon them.

This requires systemic change and a real listening to and understanding of autistic people. May I ask what schools hire autistic adults to work with autistic children in the classroom or consult on school boards for autism programs? Please, write if you know of one here in Ontario. Instead, non autistic educators believe they know better — they believe they know how to teach autistic people. Even we parents sometimes think we know better. It takes us out of our comfort zone to be patient with an autistic nature. Think about the patience and effort that people like Ayn and Adam have to produce in dealing with ours? Sure the toolbox of methods work here and there, but what is happening to our children, to Derek and Ayn, is not an accommodation. This is what we seek. Understanding, accommodation — not separating us from the people we love.

Every single day, Adam and I face these challenges together. We fight for better services, be they ABA or AAC and for all kinds of acccommodations that help autistic people contribute to society as autistic people. I know we are not always listened to. We are not heard. No one believes it’s a good thing, perhaps, to be autistic. Few want to bother because autism is seen as our contemporary problem. If we can’t fix the problem, we have failed. I say we are failing autistic people.

Must we also live in fear, like Derek, of our children being taken away? As parents, we cannot control everything that our children do, or what happens to them. This is true of all children, not just autistic children. Being autistic seems to be a reason to discriminate against us.

As Adam himself goes through many changes in his life (we’ve been checking off the list of “life’s top stressors”), I’ve been re-reading Temple Grandin’s book Emergence: Labeled Autistic. She describes similar behaviours to Adam like fixations with doors, difficulty with communication or inconsistent communication. She describes her twitches (like Adam’s) as “panic attacks” or anxiety.

While I’m processing a lot of this lately because we are in the midst of this ourselves, I see an urgent need for others to understand us. I see a need to reduce some of the expecations, and for calm environments. I see a need to simplify our lives and let things be sometimes. We are so busy dealing with what our kids must or should do, that I truly believe that this only brings on more stress. Every morning when I wake, I wonder how we can simplify our lives, and wonder why it seems to be ever more complicated. This is the commitment many of us parents of autistic children make every day: to stand by our children and fight for their rights to be included in our society, not taken away or segregated.

Every autistic adult who has written a book discusses their panic at this over-stimulated world we live in. Donna Williams, Temple Grandin are really accessible reads.

Let me take some quotes from Temple’s book that may help describe what I call now the “flight response” of Adam, and perhaps children like Ayn. I know there is no scientific evidence to support my theory yet, but I really suspect that wandering and fleeing in many cases has a lot to do with this anxiety:

“The real world became more unpredictable. I longed for relief, but I was trapped in physical distress. Stress showed in my speech, my actions, my relationship with others.”

Adam’s bolting is associated with doors recently. He is fixated on them and has to check what’s behind each. This has calmed a bit since the end of school, but when he’s anxious it can start up again and this is how he can suddenly disappear, even if we hold his hand — he can slip out so fast. Yes, our house has locks from the inside, like Derek’s. I’ve bought I.D. for him, even a harness (which we have not yet used, but it’s here just in case), and we are looking into a GPS. We have programs and social stories and are trying to help Adam in every way we can with his stress. Re-reading Temple’s own accounts, seems to have re-affirmed my suspicions about Adam, and helps me to consider various options for him to grow and develop as a fulfilled autistic individual:

Then, in chapel one Sunday, I sat on the folding chair, imprisoned by the school’s rules of attendance and bored…bored…bored. When the minister began preaching, I escaped into my inner world of non-stimulation. A world pastel and peaceful. Suddenly, a loud knock intruded upon my inner world. Startled, I looked up and saw the minister rap on the lecturn. “Knock,” he said, “and He will answer.”

Who, I wondered. I sat up straighter.

“I am the door: by me if any man enter in, he shalle be saved (John 10:7.9). The minister stepped out from behind the lecturn and stood in front of the congregation. He said, “Before each of you there is a door opening into heaven. Open it and be saved.” He turned and walked back to the lecturn. “Hymn 306, ‘Bless This House.’”

I barely heard the hymn number. Like many autistic children, everything was literal to me. My mind centered on one thing. Door. A door opening to heaven. A door through which I could pass and be saved! The voices sang out and when I heard the words, “Bless this door that it may prove/Ever open to joy and love,” I knew I had to find that door.

For the next few days I viewed each door as a possible opening to love and joy. The closet door, the bathroom door, the front door, the stable door — all were scrutinized and rejected as the door. Then one day walking back to my room from dinner, I noticed that an addition to our dorm was being constructed…I climbed to the fourth floor….And there was the door! It was a little open door that opened out onto the roof….A feeling of relief flooded over me.

Ayn wandered to a yard with a trampoline. Adam returned to the church from where he escaped…through doors and then back inside them again. While wandering is a very serious issue, are our children seeking their escape? Are they seeking relief? Joy? We must keep our children safe, and I can attest that we are doing everything in our power to do so, like Ayn’s father, Derek, who loves his daughter so very much. But because Ayn is autistic, and perhaps because Derek is on social assistance, she has been taken away from him. Is this some sort of sick cost-saving measure instead of providing the services that Derek and Ayn might need? I can imagine the pain he and Ayn must be feeling right now.

Our society must work so much harder to understand what we as parents face and what autistic people face. We must be able to share our challenges in order to survive them, without fear that our children will be taken from us. I want to be proud of the country I live in in how it supports autistic individuals and families. This incident does not make me proud, or rest easy.

Let me share one more quote from Temple Grandin, lest society think that autistics can’t understand what’s happening to them:

As an autistic child, difficulty in speaking was one of my greatest problems. Although I could understand everything people said, my responses were limited. I’d try, but most of the time no spoken words came. It was similar to stuttering; the words just wouldn’t come out…”

and,

Too many therapists and psychologically-trained people believe that if a child is allowed to indulge his fixations, irreparable harm will result. I do not think this is true in all cases. Fixations can be guided into something constructive. Talking the fixation away can be unwise. Just as a bad habit is expunged only to be replaced by another bad habit, so it is with fixation. But making a positive action out of a fixation can be rewarding.

Maybe Ayn needs that trampoline. Maybe a neighbour can give her that access. Social services should give Ayn back to her father as soon as possible. Parents and autistic people need accommodation and better supports. Foster care will not give Ayn many options and will likely create irreparable damage. Ayn is a person-first and a very lovely little autistic girl, I might add. This is the stuff that makes being a parent of an autistic child, challenging. Let me reiterate: we need understanding and support. Not punishment.

Please sign this petition to help bring Ayn home.

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