A Farewell; A New Beginning

Filed Under (Adam, Advocacy, Writing) by Estee on 28-10-2010

I am remembering the days when Adam watched endless reruns of The Sound of Music. I actually think he had a crush on Maria, with her sweet voice and blonde hair. From the time he was a year old, some of you might remember this story from Between Interruptions: 30 Women Tell The Truth About Mothehood, Adam watched Maria and the Von Trapp family intensely during his first birthday party. He still relaxes everytime I sing songs from that movie, usually as he tries to get to sleep.

I’ve written a lot about Adam over the years, carefully finding the right vignettes to maintain some semblance of privacy and dignity. Sometimes I simply gush. While there are some struggles, as a one-time-mom, I cannot help but relish in everything Adam does. He is, and I’ve heard this someplace else, my heart literally walking about the earth. Although autism is important — we’ve had many valuable discussions through our blogs — it also doesn’t matter in the way I love my child. Adam is Adam, and he has brought me great joy.

Forgive me for the slow-coming blog posts these days. I have been thinking a lot about Adam and this explosion of language, his talking, communication — his expression of feeling and will.

I’ve also written occasionally on how to write about our children and of course I am thinking a lot about this now. I acknowledge that Adam is not a willing participant in this, although I’ve tried to get his “permission” to write about certain things. It seemed tenuous in that his communication was difficult to come by. I would ask Adam to type a yes or no to certain things I wanted to make public. It was sometimes difficult to tell if his yes was intentional as he would either quickly point, type or even say a “yes,” in an effort to fulfill my need for an answer. This has changed in the last while. Adam’s intention is much clearer now.

In my last post, I wrote about watching Adam express his will in “early intensive” therapy. Although I was emotionally attuned to him, I see his intention even more now watching videos in retrospect. Therapists talked too loud. They didn’t sit and listen. They didn’t join in with him, early on, in his version of games and communication. Amidst a mish-mash of discrete trials and play therapy, I heard a faint “don’t” in the video when a therapist tickled him. I am certain, as much as I like to think I am listening to Adam, that I spoke too much and didn’t give him a chance. I’m certain there are moments I also didn’t hear him. Children are often not listened to. Non-verbal autistic children are, for the most part, ignored.

Still, while I must lay down some rules for his safety, Adam also needs a safe place where he can express himself, to me. For Adam who may read this when he gets older, I hope he will understand (and perhaps forgive…or maybe he will cherish me for this, I cannot predict) his mother’s need to express herself. I began blogging in 2005 (fomerly joyofautism.blogspot.com) during a time period that was highly volatile and polemic in autism, and in an atmosphere where everyone wanted to change Adam, simply because he is autistic. I’m not saying this atmosphere has changed. I have, however, changed. As Adam’s mother, I value the learning of discipline, rules, and being educated equally as much as finding one’s own way, creativity and uniqueness. We all must learn it and so, Adam was born perfect.

Although I still wish to feel his feather-like hair brush against my face, and although I still want to hold him like my baby, he is no longer. He is expressing his sincere need for independence and his need to be heard. I search his face for that baby I birthed and I see an older boy take his place.

I want to say farewell, not to blogging or writing about autism necessarily, but perhaps to a type of blogging where I made certain assumptions, and a type of writing that talks about one’s child as a cherished baby. Adam and I, in addition to all the changes we have experienced that have formed us today, have entered an entirely new phase. I’m watching how both my outlook and writing will too.

So, I will continue to choose my words carefully. Here, I mark a new era.

Ontario’s Accessible Customer Service Standard

Filed Under (Inclusion) by Estee on 20-10-2010

On January 1, 2012, businesses are asked to comply with the new Accessible Customer Service Standard. In other words, all non profits and businesses will have to begin to accommodate individuals with various mental and physical disabilities. This will include autism.

In terms of understanding disability and preparing for the change, these videos provide an excellent start.

If the link doesn’t work there, you can try www.ontario.ca/AccessON.

“It is not about your physical premises,” states Alfred Spencer, Director of the Outreach and Compliance Branch of the Accessibility Directorate of Ontario. “It’s simply about understanding that customers with disabilities may have different needs. It’s about finding the best way to help them access your goods and services.”

May it be one critical step to Inclusion.

Adam, The Autistic Self-Advocate

Filed Under (Acceptance, Advocacy, Autism Spectrum and Diagnosis, Autistic Self Advocacy, Communication) by Estee on 18-10-2010

“Turn it off!” I had been watching some old videos of Adam before he was even two years old. Adam, now eight-years-old, stood in front of the television and watched for two minutes intensely before he told me what to do.

There are two therapists in that video, in front of him talking fast and loud. He is sitting in a chair and they insist that he stay there — he small enough that every time he tries to escape they physically replace him onto the chair. The video begins with Adam crying, squirming and trying to get away. He is so small, such a baby. He is saying many things, although they are hard to hear because the therapists are talking so loudly compared to his forming, warbled articulation. As one of the therapists replaces his tiny body in the chair, she tickles his stomach.

“Don’t,” I hear him say in a super tiny voice. I hear him say it now re-watching these, but I may not have heard it back then. I may have not heard it in the frantic effort to get Adam to do and say what the therapists wanted him to say. I would have not heard it over their loud voices.

I am watching these videos six years later, as Adam has developed and changed so much. I feel we have very much entered a new phase of life together, a new phase of understanding our lives as an autistic family.

Adam then went to his Vanguard device after telling me to shut off the TV. “I am uncomfortable,” he pressed. I suppose I can say, said. We call it his talk box. The Vanguard device, which is a series of pictures and words can be programmed to make sentences. Things like verbs, feelings, activities are all categorized on it so Adam can tell us many things. Sometimes Adam can type sentences on his computer, sometimes he uses the Vanguard and sometimes, especially this past weekend, Adam can talk. Adam talked more this past weekend than I can remember in his lifetime.

I have set out to watch those videos on my own without Adam present. As I watch them now, I am highly disturbed. We made him sit so young, and forced him to watch the therapists. Although this was NOT a strict ABA program, we did attempt to “programme” Adam in an ABA format. The therapists talked, they wanted him to answer, they dangled coloured circles over his head so he would repeat the colours, blew in his face, repositioned him on the chair — all at a roaring rate. I cannot imagine how completely overwhelming that experience was for Adam.

All I had in the beginning was ABA therapy. Then came along RDI (Relationship Development Intervention). I thought I kept helping Adam better each time I learned about something new because no one offered us any other solution. While I tried to follow my instinct, what was available to us wasn’t keeping pace with the values I was forming about Adam as an autistic person. Still, Adam was forced to “conform” no matter how much we said it was to “engage” him. Later, we became more adept at involving ourselves in his games. Later, we became quieter with him.

As Adam’s mother, I sometimes want to cry when I watch these videos. He was bombarded. In no way was he respected as an autistic person from the get-go. A couple years after that I definitely learned more and tried harder. Yet I wonder, since we are still talking about finding genes in autism and intervening earlier, what kind of life experience our autistic children will have and remember, when they are programmed to be typical.

I find it so ironic that Adam talked the most he had in his lifetime this weekend, and he told me to turn off one of those “early intervention” videos. I suspect he does not feel good about it at all. What makes me feel so guilty, because I love Adam so much, is that even though I searched for ways of assisting him while trying to respect him, he may have not been in those earlier years when he was so vulnerable. He couldn’t really communicate in words then. He has severe difficulties, even now, to do so consistently. As Adam becomes his own self-advocate, I just found it so striking to have this juxtaposition between the old videos against the Adam of today. Even back then, just because he wasn’t talking, he was still a person. I suppose I could say he was ignored like the moment when he said in a voice so quiet, “don’t.”

I think if someone had shown me this when we received the diagnosis, if autistic people could recount their stories and be available to all “new” autism parents, my life may have been calmer and Adam may have had better supports that accepted him as autistic. I write this with forboding, wondering what kinds of early interventions are being concocted for infant autistics. Certainly, I changed the approaches after those first two years, and he became happier for it. He has had many challenges, but he is also now talking. As he does so, while it is nice to know what our children are thinking, I can tell you it is not a solution. It is not the Holy Grail. We will have many years ahead of dealing with Adam’s unique way of functioning in the world, and I don’t always expect it to be easy. Communication is important. Acceptance is vital.

A Remarkable Night

Filed Under (Adam, Communication, Development, Joy) by Estee on 15-10-2010

Tonight has been a most remarkable night. Adam has probably talked the most he has in his lifetime.

I have no answers why. We’ve supported him, taught him, spent six years fine-tuning, changing and adapting things. By “things” I mean his therapies and education, devices, strategies, habits, you name it. We made sure he didn’t do things too soon, trying to be attune to Adam’s needs, which have been many. His needs keep changing. It’s a journey. It’s a dance where the steps keep changing, a jazz troupe with a new riff or musician every few weeks. We aim for consistency yet nothing stays the same. Adam never stays the same.

As I said in The Autism Acceptance Project video a few years ago, “when a children are happy, they can learn.” Sometimes I had doubts. Should I have pushed Adam harder?, I asked myself after he lay sound asleep after a difficult day, or a day when I was challenged by others who insinuated I was not doing enough for my child (while not really knowing us). I’m not here trying to give myself kudos or to dismiss the choices of others. Yet, there is a part of me tonight that is proud that I stuck to my guns by doing what I felt was right for Adam as well as my needs and values as his mother.

Our lives, as that saying goes, are comprised of the choices we make. I’m quite certain I’ll continue to make mistakes like all parents, but overall I’ve always believed that being as sensitive to Adam as he is senstive to his environment and to others has been a necessity. By viewing it as such, I made the choices accordingly. For those of you who don’t know us, this started Adam was only 18-19 months old. By the way, I expect my ideas and parenting style to be continuously challenged. It seems to go along with the territory of being a parent. It is gratifying that once in a while we get some kind of affirmation about the choices we have made. That is what this blog post is, in part, about. But really, it’s more about the need to be sensitive and to be open to change as well as our ability to adapt. These are the “things” I have to continuously re-learn. I hope I’ll get better at it.

Adam has had quite a year, not to mention years of going through “people” in his life because of the education and support he has required. His life has been pretty consistent, mind you, but not without upset, as life is for everyone one way or another. This year, he began a new school and the change took a few weeks of getting used to. He lost his words and he engaged in more “OCD” or ritualistic behaviour, desperate to create order out of chaos.

Over the course of four weeks, this has abated. He still has some difficulty letting go of some of the rituals that he began as a result of the change.

“I can’t stop. I can’t stop,” he told me tonight after I silently redirected him towards my bed. Too many words from adults can be irritating not to mention too many “no’s.” He has taken to getting in and out of two bath-tubs in my home. He wasn’t that happy with me, but the crying was brief, about two minutes. I turned on the soft music, helped a rash that was bothering him to soothe Adam a little more, and we just hugged. “I can’t stop,” he said again calmly.

“I understand you are telling me you can’t stop,” I repeated so he would know that I was listening. His body relaxed and he lay deeper into my arms.

That was the only challenging part of the evening. The rest was a night of Adam telling me that he went to the zoo today, that he saw a Gorilla and a Lion, that his rash was “itchy…it is bothering me,” to what he wanted to eat, in full sentences — not the usual two or three word phrases. On his walk he said things like, “I want to go this way,” or “I don’t want to go there.” Perfectly. In the evening he asked for certain lights to be turned off. When I was getting it wrong several times over (there were a few lights on and it took a while to figure this one out), he pointed towards the hallway. “Turn the light off outside!” he said forcefully. Phew. Glad I finally got that one right!

He was asking for books unseen (therefore unprompted… all of this was not prompted in any way), and we read quite a few, of course ending with Dr. Seuss. Tonight was Horton Hears A Who …”a person’s a person no matter how small…”

Change is hard. Change can be good. We can’t stop change. Finding the right time to teach certain “things” has been a challenge because Adam is bright but very sensitive. Knowing when to push and when to back off is based on the uniqueness of Adam, not solely on Adam’s autism. I thank the team who keep sticking with us on this remarkable journey.

A remarkable, notable evening.

The Abuse of Autistic People

Filed Under (Activism, Inclusion, Safety) by Estee on 14-10-2010

As Adam begins to get older and the more options that become available to him, like overnight camps and aide workers, I am more attuned to the many stories I hear regarding the abuse of autistic people. There was a time when Adam and this blog were younger, that I had followed a website that tracked nearly every case of murder and abuse. It’s hard to get wrapped up in that for too long. One has to know when to look and when to carry on. There is fear and then there is awareness.

I never bought into the “recovery” model of autism — that the onus was on us and our children to “become normal.” To blame the autistic person or a family for a child not being able to talk is ludicrous and unsupportive. Rather, I believe we have to keep aware of the many cases where vulnerability lies, and provide the finanical support so that families can hire the aides they trust. While nothing is fool-proof and many of our children can be susceptible to abusers, autistic or not, it is helpful when parents have the right to choose a school aide or any type of support worker. A parent or primary caregiver should have the right to turn down someone they do not feel comfortable with. I say this because many children are ascribed workers and Educational Assistants here in Ontario. It might be assumed that if one needs financial support, then one must accept the individual ascribed to them. If it’s an issue for the family, that is if they want to change the worker, there seems to be a lot of red tape. I want to reiterate that the right to a support worker, that both the autistic and the family are comfortable with and trust, is an accommodation and should therefore be a right for autistic individuals.

More and more, I believe that autistic people, including our non verbal children, and parents must be central to the process in building our support teams. As I’m seeking camps and other activities for Adam to grow more independent and enjoy his life, I want to try my best to ensure he is protected. I’m not sure I can at all times, and maybe that is the most frightening part. Yet, Adam can indicate to me when he’s distressed by virtue of his behaviour. Just transitioning to a new home and a new school, he indicated to me that it was very difficult by body-jerking and losing some of his words. He was disorganized and needed more physical stimulation. He also expressed more repetitive behaviours during this time. Of course, Adam is still learning how to communicate in a typical way by typing on his computer and his devices.

These behaviours, however, were such important examples for me to see how Adam can express himself during stressful times. It is something I am tuned into now as he grows older and perhaps will express other distressing things to me where he needs more of my intervention and support.

For more reading material on autistic abuse see neurodiversity.com.

Just Another Day

Filed Under (Adam) by Estee on 07-10-2010

Adam is clearly settling into his new school. He is happy when he returns home. He comes with a journal telling me what he has done as well as a day-timer for scheduling and organizing. I’m sure liking this new school. Prior to this one, I had Adam in an integrated setting where I didn’t get much feedback on what he was doing. I put him there in Kindergarten because it was a Montessori school and at the time he needed to be calm with others in a school setting. It was good for him at the time and I’m grateful he went there.

Here in Toronto, however, I haven’t found a truly “Inclusive” scholastic setting. We have integrative settings where an autistic child is segregated for part of the day and reintegrated into a “regular” classroom for another part of it, if I can describe it swiftly. The problem with these settings is that the onus is always on the autistic or special needs child to conform to the “regular” or “normal” setting. That setting usually has one curriculum and is rarely adapted. The work is usually completed in the same way by all the students.

The Inclusive setting, ideally, would not only adapt and accommodate a program to the needs and capabilities of the child but also teach the “normal” students the innate value of the “special” students. Ideally, we would regard everyone as different, but equal — not ghetto-ize, or make them “terminally unique,” if I may reuse a term from Amanda Baggs that she used a few years ago at M.I.T in Boston. A subject can be taught uniformly (about, say, Volcanoes), but the students might manifest their comprehension of the subject in different formats depending on their interests, talents and capabilities. All these manifestations or expressions would be highly valued.

This doesn’t exist here in Toronto (to my knowledge). So, I’ve put Adam in a school where he is with a variety of different kids, not just autistic kids. There are kids who are mentors there to him (he really likes that and looks up to the older boys), has social skills and life skills classes in addition to his academics that are built to suit his needs. Like many other special needs kids, he now has an I.E.P. (Independent Education Plan).

A year of big transitions, including a change of schools, has definitely taken its toll on Adam, but he is still a gentle child. He can become frustrated, but he doesn’t act out on others. When he is anxious it is very difficult for him to communicate his needs.

As I often say, because little things are major around here (although we don’t overdo it with fanfare), I have to tell the story of driving Adam home today, when the language was easier. It is an indication that he is making sense of things again.

“How was your day, Adam?”

“Goud,” he said in an almost Swedish-sounding accent.

“What did you do today.”

“Walk.” He did go on a nature walk today.

“That’s great,” I said smiling, giggling a little, trying to keep my eye on the road while turning my head slightly to see him from the corner of my eye as he was sitting in the back seat. “What else did you do?”

“Art.” Indeed he did that too. He made me a Thanksgiving turkey out of construction paper that is now taped on our kitchen window.

“Why don’t you ask me what mommy did today?” I suggested, thinking that he has a right to ask me questions — our kids get so “grilled” by them. “Say, Mommy what did you do?”

“Mommy what didyoudo?” he said it so quickly that the last three words sounded as if they were one. He said it without hesitation, looking straight at me.

“I went grocery shopping and did some work today at my computer,” I replied.

And so it was. Just another day.

Theories Serve to Guide Us

Filed Under (Autism Theories) by Estee on 05-10-2010

I enjoy listening to Uta Frith. I appreciate her ability to balance the way she views cognitive theories that help us “guide” us to answers. Also, I like when she states “explaining the causes [of autism] is not everything….we need to understand what it means.” Yes, we need to understand what it means to be autistic. We can only know and come to understand this by engaging with autistic people. Also, parents have so much to contribute via anecdotal accounts of how our children engage with us and how we come to view autsm by living with our children day-to-day. We all have something to contribute to the scientific process.

One thing to remember is the next time a news report states “a new study links…” which is something we seem to hear almost weekly, that this study is more than likely a theory; another stepping stone to understanding autism and our amazing children. Thinking of human difference, I thought I’d share this quote I found:

“An individual having unusual difficulties in coping with his environment struggles and kicks up the dust, as it were. I have used the figure of a fish caught on a hook; his gyrations must look peculiar to other fish that don’t understand his circumstances: but his splashes are not his affliction, they are an effort to get rid of his affliction and as every fisherman knows, these effects may succeed.”
— Karl Mennenger

Of course, I don’t view autism as an affliction, however, I do appreciate the effort of autistic people to manage the environment. I view it as natural to Adam who must do certain things to make himself comfortable again.

Protecting Little Joys

Filed Under (Acceptance, Adam, autism, Autism Theories, Joy, Research) by Estee on 04-10-2010

We have to protect our little joys. I was thinking of this as I was putting Adam down to sleep this evening. As usual, we read Dr. Seuss. He eventually yawned and put his head down on his pillow. It sounds “normal,” I know. Around here, hums, noises, hand-flapping, smiles, and some words (difficult to come by) are our normal. Also “normal” is Adam’s soft hair that I can’t help recounting over and over because he presses his head gently into my face before he drifts off to sleep.

Adam has adapted to his new school which will accommodate his special learning needs. Today, he brought home a Recognition Certificate for his accomplishments — on focusing and “completing daily tasks.” I thought it was a wonderful idea to recognize his accomplishments. I loved it also because Adam was full of smiles when he came home from school today. Thankfully, his cheeks are still so round that when he does so they just get fuller like the moon. Time has not taken them from me yet.

As his parent, I have a right to enjoy Adam’s brief childhood. I’ve been in this autism world for six-and-a-half years now with Adam (he is eight) and I’m always breathtakingly amazed with the copious amounts of information about autism, usually presented in dire terms, that infiltrate parents negatively and make them worry. We worry so much that we blog, enter information on Facebook and Twitter about autism endlessly. Okay, let me speak for myself by hiding behind the “we,” won’t you? If we’re not actively doing that, we at least read so much. Worrying about our children, autistic or not, seems to be part of the parenting job. We all want our children to learn. I am not against research or reading the information. Yet I do think it’s okay for parents to take a break from the autism tornados brewing out there.

Autism doesn’t steal our children. Fear and worry steal precious moments with our kids. It steals our happiness with what is. It might be the reason why I find it difficult or frustrating to read some things these days. We still need more “positive autism” out there.

I cannot think of times more special than these: reading to Adam, watching him smile, being witness to every accomplishment (no matter how minor), and simply putting him to bed, to name a few. Thinking of how quickly this will pass — when he will no longer have the famous cherub cheeks and tiny-voiced giggles, well, I want to know that while there was worry constantly spinning around us, and a race to make Adam “better,” that I really did work on being the calm within the storm. I want look back and know that while I served him well to find the best-suited education, I also took the time with him to just be happy.

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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.