It’s So Nice To Have This Time Together

Filed Under (Acceptance) by Estee on 29-12-2011

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.

Keep It Simple Over the Holidays

Filed Under (Acceptance, Development) by Estee on 23-12-2011

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.

Part of the Network of Give and Take

Filed Under (Contributions to Society, Inclusion) by Estee on 18-12-2011

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.

Book Review: Challenging The Myths Of Autism by Jonathan Alderson

Filed Under (Book Reviews, Critical Disability Studies) by Estee on 07-12-2011

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)

Patience With That Egg

Filed Under (Acceptance, Adam, autism, Autism and Learning, Communication) by Estee on 05-12-2011

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.

The Boy With The Wily Grin

Filed Under (Communication) by Estee on 01-12-2011

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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About Me


ESTÉE KLAR

I’m a PhD candidate at York University, Critical Disability Studies, with a multi-disciplinary background in the arts as a curator and writer. I am the Founder of The Autism Acceptance Project (www.taaproject.com), and an enamoured mother of my only son who lives with the autism label. I like to write about our journey, critical issues regarding autism in the area of human rights, law, and social justice, as well as reflexive practices in (auto)ethnographic writing about autism.