What’s the Problem Represented to Be? Autism, School and Policy Musing

Filed Under (Government Services, Human Rights, Inclusion, Institutionalization, Policy, school, Single Parenthood) by Estee on 22-04-2015

As Adam school closes, we have our Plan B which does involve his acceptance into a high school language arts community in a school devoted to social justice. Adam is in grade seven but will jump a grade. Some might say this is Ironic, no, for a child who some therapists said couldn’t understand, let alone speak fluently? But it won’t all be in school. In thinking about the schools, policies and systems that are currently in place for autistic people in Canada, I came across the following:

“Heidegger says we are accustomed to having conditions given so that we can plan out definite results. We are used to being able to plan, to calculate, and when we cannot do so, we feel out of our depth…” I fell onto this while reading “Our Dissertations, Ourselves” (2014) but it has another meaning for me. I have promised Adam (and myself) that I would never put Adam into an institutionalized setting/school or group home. The IBI program that I strongly critique is anchored in calculations and definite results or outcomes, even when they are built on false promises because of false assumptions/premises. We want to depend on others to much of this for us… to solve a “problem.” In this, I like what Carol Bacchi asks “What is the problem represented to be?”

This is the core of how systems and autism policies are built.

I think of it this way, we really shouldn’t launch into parent-hood without recognizing that no matter who the child will be, there will be challenges, systemic and otherwise. The neoliberal system also in which we all live works against children by suggesting that everyone can work (and this is also disguised as fulfillment and leisure which often creates a tension with domestic work). I admit I resent this tension. Parenthood requires all of me. It requires that I work outside of existing conditions neither serve Adam nor our values. It is not easy to work outside of systems, or meander in and out of them as we see fit. But right now, we feel it’s necessary.

Reference:

Christine Sorrell Dinkins and Jeanne Merkle Sorrell (2014), Our Dissertations, Ourselves: Shared Stories of Women’s Dissertation Journeys. Palgrave Macmillan

A New Beginning

Filed Under (Adam, Estee, Family, Friendship, Love, Single Parenthood, Transitions) by Estee on 15-09-2014

Adam on the move Adam on the move[/caption]

And so we moved again. It has been lots of hard work to prepare Adam for another (and final) move to our now permanent home in downtown Toronto. I decided to put everything aside to prepare him (and our new home) for the transition. This involved many social stories, visitations to the renovation site, weekly pictures and a reassurance that this was going to be a happy move. Our last move was a consequence of divorce and took its toll on both of us.

Adam had lots of positive support and a smooth summer at camp. I prepared calendars, reviewed them, we typed (talked) about moving all the time. I also made a calendar countdown to prepare with a symbolic punctuation to indicate our last day at our house; this involved letting go of four red balloons into the sky. On them I wrote: Mommy and Adam, Hope and Dreams, Bye Bye (address), and New Home.

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Before the bus came to pick up Adam early on August 14th, we stood on the driveway on the sunny morning and discussed each balloon then let them go one by one. We watched them float high in the sky – the sun in our eyes – until they disappeared. Adam’s grin was wide and he jumped up and down a few times; my heart was heavy as it was giddy to see how well this was going. Adam seemed to be coping so well… not tearful or anxious as I expected him to be. In fact, I was floored when he typed about the move, “you are home to me.” Now that’s putting things into perspective!

Soon I would let Adam get on the bus and say goodbye for two weeks. Later that day he would go to his dad’s house while I prepared our new home for his arrival. The movers would be there on the heels of his camp bus, gutting our memories – of becoming a new kind of family from the new pictures on our mantel to Adam’s art that would make it our home. I wonder if I had made such earnest preparations to avoid the severe spasms Adam encountered during the divorce move; to avoid the heartbreak we worked so hard to overcome…and succeeded.

I recalled when we made another happy move – when Adam’s father and I built a new house and Adam participated in his weekly construction with frequent visitation to the site. There was one object I had left back in our, what I will call, “Rosemary House” (to do with the location) that I had to return to obtain. I was pregnant with Adam in that house. We had found out Adam was autistic in that house and endured hours of “therapy.” I was becoming the mother I was meant to be. It was old and rickety but it had cradled precious memories that are heritage to me (sadly the house was not and has since been torn down). The object I returned for was Adam’s bassinet which was mine as an infant. My mother worked hard to refurbish it for Adam and it was hand-made by my grandmother. Heritage was at least maintained in this. A light summer storm was brewing in the late afternoon as I pulled into the driveway and Adam, only a toddler, was asleep in the back seat. I left him in the car to quickly run in and grab the bassinet to put in the back of my van. But it was hard to leave the warm inside. There is a compulsion to stay in an old empty house full of memories even when it is stripped bare except for the dust bunnies that appeared like tumbleweeds in the desert. I remember standing in our bedroom, where Adam spent most nights with us, trying to review all the memories in fast-forward. I had to pull myself away to return to Adam, still unaware and fast asleep.

Perhaps we’ve now had too many of those moments ever since. As Adam’s bus turned the corner, the movers pulled in. They worked quickly removing boxes and our house was empty again. I vacuumed and cleaned it for the new owners but also because of gratitude and the love we built in that house. I felt the pull again to linger and remember how Adam and I learned to become our own family unit; how friends became our family there and how my parents Adam and I have become closer than ever. Adam and I did it – we pulled it together in that house. As I felt the tears begin, I abruptly left. It is time to move on…go, I said aloud. Time to move to our happy house, close to public transit and bustling life on the streets… and down the hall from my parents. It was part of my plan for Adam and his future being in the heart of transit and the city for his quality of life. It was fortuitous that it all worked out. So instead of preaching, I decided to lead by example: to leave quickly and look forward while paying respect to our past. Remember the red balloon that read: Adam and MommyHopes and Dreams.

A month later I can write about it. There is more to follow.

Parent/Teacher

Filed Under (Adam, Anxiety, Behaviours, Communication, Estee, Language, Obsessions, Parenting, school, Single Parenthood) by Estee on 07-01-2014

We begin 2014 anew. I have applied for a leave of absence from my PhD study to focus entirely on Adam’s program. In so doing, I recognize I need time to energize myself and have some free time; this is not possible as a single parent of an autistic child if I don’t cut back. So, at the end of 2013, I made the empowering decision to become a communications specialist and educator of my son. I’m making field notes along the way. I don’t do this alone of course; it takes others to assist us. But in Canada where there is a lack of trained specialists in supported communication, this is up to me now. Thankfully I have other supporters and success stories including our own.

With the ice storm, a sudden move to a hotel due to the massive power outages in Toronto, the holidays and general upset at the end of this year, I may have fallen into one of my darkest places. I hate to see my son so upset, so less able to handle transitions. I realize I hate holidays too – there was too much expectation despite the fact that I know that this a sure way to fail. No way, no how next year. One modest dinner and one present…that’s enough and that’s lovely.

Of course, much of this has to do with my own resilience and preparedness. Sometimes, Adam requires more preparation than usual – more social stories, lists, repetition of what we are going to do next. He can be the kind of kid that seems to be rolling along quite well and then he needs exceptional support. Let’s just say this past December he needed way more than I provided. School had exhausted me as well which didn’t help. Writing about the philosophy of language and disability takes a lot of of one when a child’s scream replaces words; they are more commanding. As soon as I turned my attention to helping Adam, he calmed down. His school assisted with what we call “operation calm down” and his environment, demands and work were all reassessed. For Adam, he requires proactive breaks every twenty minutes to return to his desk. His school has been most accommodating in helping to provide these breaks. Eventually, kids who are accommodated are often able to increase their level and time of focus as they mature. If there’s one thing I never stop learning is that changing expectations means that you always have to reassess them.

Adam then had a long break (albeit the first half was stressful with the storm). When he returned Sunday, we had another cold weather, namely the “polar vortex.” Schools were cancelled so I planned the day: a walk before it got too cold to go outside, art, reading and typing (I made a program for that), sensory swing, and computer. In between such a good day, Adam decided he wanted some pretend play so we went with that (lots of language there). There was only one incident when his grandfather popped by and then Adam thought he was going to “gramma’s house.” Adam will tend to want to do things that are routinized and when he found out he wasn’t going, he screamed. I left the room and asked him to read a book to calm down. He did so in less than five minutes, which I thought was pretty good. When he was quiet, I returned to ask if he was feeling better, ready for another scream. None came, but it might have. I told Adam I’d check on him again in a few minutes.

When I did, Adam went through his lists when he knew “gramma’s house” wasn’t an option: “Brunos”(which is a grocery store), “Hero Burger…Burger King…Shoppers Drug Mart…”

“Adam, mom needs a break. I’m going to have a cup of tea,” I said. I decided that bargaining wasn’t going to get me anywhere and I’m trying hard to build Adam’s “no” muscle. I sat quietly on the couch drinking my tea, expecting the whole while that another scream was possible. None came. Soon, Adam made his way up the stairs from where he was in the rec room, and lay flat in the hallway. I said nothing and kept drinking my tea. Eventually, Adam brought a book to the couch and sat with me. We got to the point where I could ask him what he wanted for dinner. If he would scream, I would have sent him quietly to his room not as a punishment, but so he learns about self-calm and what I expect from him. There, he has more books to read, which I feel is a positive way to self-regulate intense emotions and which seems to work for Adam.

“Teachable moments” like these make me feel like a competent parent and teacher, and I think we all need to feel that way. I had prepared, I have been studying to make Adam’s programs comprehensive, and I’m becoming more prepared and working on the more difficult behaviours such as bolting, opening doors, and the so-called willfulness of puberty while recognizing that Adam might be confused and sometimes fearful – helplessly resorting to routinous behaviour in order to self-regulate or find order. It is my job to help him. This is what makes my days feel gratifying rather than worried about him while I sink my head in Barthes and Derrida. While I’m not going to stop reading and writing, I just am going to use what I’ve learned in theory and turn it into a practice.

Yesterday and this morning, Adam was beaming. He was happy to go back to school this morning. Starting next week, I get to teach Adam more communication, typing and literacy, life and social skills. I have begun my leave to do this work. I hope we both have a wonderful 2014.

Emerging Tensions: Puberty, Autonomy and Safety

Filed Under (Aides and Assistants, Anxiety, Autism and Learning, Behaviours, Communication, Development, Family, Identity, Inclusion, Intelligence, Living, Love, Movement Disturbance, Obsessions, Safety, school, Sensory Differences, Single Parenthood, Transitions, Travel) by Estee on 13-12-2013

It’s the end of the term…I need a long break and so does Adam. His anxiety went up as soon as the clocks turned back. The darkness brought about a new mood, Adam’s ticking went off the charts and he started a new tick – a screaming tick. He wasn’t happy – he couldn’t stop it as the pressure mounted on him to stop. I felt pressure in trying to help him, because let’s face it, screaming disturbs the peace. It’s alarming. With it, Adam’s flight-fight prompts him to bolt when he sees pathways and stairwells. These are all the signs that Operation Calm Down had to be put into effect. By virtue of naming it so, it’s not the first time we have implemented it.

Dad took Adam on a short vacation and this allowed me to have one too. On my yoga vacay, I met another dad with an Asperger’s son. He too mentioned that his son ticks and these anxiety attacks, let’s call them for now, make it difficult to get back to schoolwork. His son’s grades are going down, he said. So too, autistic autobiography reiterates the length of time it requires to self-regulate…sometimes days. Although I’ve been busy with PhD study, I realize the patterns of Adam’s distress tends to be at regular intervals during the year, and after sickness. Now that his body is changing as well as his needs, I am considering a leave-of-absence to help him, but also to help myself in so doing.

In thinking of Adam’s life and the very complex anxiety he has, his motor-planning difficulties, his frustration so apparent as he tries so hard to talk (the other day he got so frustrated, he picked up a pencil and in his chicken scratch wrote that he wanted to go to “gramma’s house”), we can’t always expect a learner like Adam to spend day-after-day exactly the same. The seasons change, there are new anxieties in life and we all need breaks. This is one of the most fundamental obstacle I can think of in how we teach children in general – in chairs for too long, in small rooms, with little outdoor exercise because of liability issues. It’s not one person’s fault, per se. It’s how we’ve built our society. We live in cars, in buildings and we don’t get out much. If Adam had an outdoor learning environment as a major part of his learning experience, I think he would be able to take in much more (outdoor education is decreasing but can be made accessible to people with disabilities). In the summer with lots of activity, for instance, he can talk more – and this is a feat for someone like Adam.

It is therefore very difficult to be talking grades, assessments, intelligence and so forth without recognizing that, living in the settings that are the way they are, that my autistic son will be delayed in his learning. The focus is far to much on intelligence (or ideas about intelligence) rather than somatic knowledge, difficulty and other ways that we can learn. I know this because when Adam is “on,” and there are adaptations to his learning, he can learn. I am writing in these terms because when looking at sites or articles about autism, the terms and ways of thinking about intelligence and learning are so “matter-of-fact” or normalized that we forget about how other kinds of learning can take place. This makes so many people, the forgotten ones. In essence, I’m trying to move away from a linear model of development and learning which doesn’t work for many people.

When the body has to spend so much time readjusting and becoming comfortable, the rest of the school work (at a desk in a chair…) has to be put aside. It would be wonderful for schools and educators to think about this a little more – to integrate movement into every aspect of the day including field trips and outdoor activities – even in inclement weather (my parents never protected me from it). I fear with our autistic children in Canada, that we are growing more back towards re-institutionalization in a different costume; we segregate and we isolate in order for our kids to be “safe.” In this, I appreciated mother and author of the book Spark, on her autistic son, namely, her “philosophy of muchness.” Never stop exposing (even with ticks, flaps and screaming) autistic children from many things – theatre, music, the outdoors, and accept the difficulties and make room for them.

We need to change the way we look at the length of education – since not all bodies cannot finish high school by the age of 18 (or 21). What other modes of education might we employ? Considering this is not as much an “intelligence” issue (I hesitate because I do not like to promote intellectualism which I find further separates people) as much as a somatic one.

Which leads me to some new revelations for me as a mom: that Adam’s “voice” is a part of his growth. It’s hard on me to watch him in a kind of pain from which he can’t escape (sometimes the ticks are a loop he can’t stop and sometimes they are willful – one “behaviour” can serve many different purposes) but also, I want so badly to give him the tools he needs so he can gain some latitude in his life. His life is so restricted with people always watching his every move – and this is, as I mentioned, for safety reasons. I often wonder, if given a great expanse of land to explore, could he feel better? What will his choices be for how he needs and wants to live his life? How can we support that? How do we stop protecting (or at least let up a little) in a dangerous world? I am certain some of Adam’s stress comes from having very little autonomy, and although he is strong and willful (which I believe will bode him well), if you can’t communicate fluently in our society, or you can’t cross the street by yourself, your autonomy is limited. This, of course, is where the concept of supported-decision making and assistance comes in, but assistants (and parents) really need to understand this and how to be good listeners (for some reading, look to Val Williams’ conversational analyses between caregivers and non-verbal individuals). Think of the life-skills training in addition to the education that our children also deserve. This takes more time than the allotment prescribed during the Industrial Revolution. I mean, it’s time to move on.

Then there is the need to reconsider how we look at behaviour from the outside. This is a problematic approach because we cannot know how Adam feels on the inside, yet we have lots of autistic autobiography to help us. When we tried redirecting Adam with a behavioural approach, this enraged him – he smashed himself into the couch and crumpled the paper from his Zeotrope in his little fists and threw them to the ground. The basis of this was to get Adam to stop screaming, but it did not account for the fact that he perhaps could not stop. This is the same for Tourettes (which I think Adam “has”) in that if you call more attention to the action, it will increase it. Instead, deflecting to relaxing activities seems to help more in addition to the sensory (deep pressure) that Adam needs.

An and calming approach worked much better than a behavioural one – this is what has to be done before we can teach any lessons – social and academic. Social stories and cognitive behavioural training are now a part of Adam’s week in addition to us seeking more adventure for him – rock climbing, circus arts and swimming. For CBT, another boy character is inserted into social stories to take the attention away from Adam. This way, Adam can relate to the character without feeling targeted. I gleaned this from reading Donna Williams’ Exposure Anxiety, which makes a lot of sense where Adam is concerned.

I fully believe after 12 years of being with Adam that seeking cooperation through engagement is our obligation, not his because he is still learning. He is a child who wants to learn, but we can’t do that by mere compliance. He complies when he is respected and engaged and also knows the rules (teaching boundaries respectfully will be our new challenge). I’ve started teaching three key concepts in various formats and in daily life to Adam – cooperation, patience and gratitude. In teaching Adam these concepts and ways to enact them in daily life, I also have to do so towards him. I’ll let you know how it goes.

Puberty will be challenging for Adam and for me. I am protective mother noticing the need and beginnings of separation. On the one hand it seems that Adam needs his structure and certain environments especially when he is feeling uncertain. On the other hand, he is truly becoming a teenager who is showing more signs of frustration and wanting to expand his world (this is different than bolting or escape but could be sometimes related). These may always be competing impulses in him, I don’t know. All I can tell is that they both exist within him. How do I give Adam boundaries and his own need for control over his own life now and ensure his safety? I’ll keep you posted on how this goes too.

That Loving, Fellowship Feeling

Filed Under (Adam, Family, Friendship, Inclusion, Joy, Living, school, Single Parenthood) by Estee on 05-08-2013

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Adam and Nolan lunch

This is Adam’s best friend. Aside from going back to camp this summer, which he is able to do with an assistant, this is the friend who Adam spends time with. We recognized it was a real, unscripted friendship when the two of them preferred to play without words, to roll around on the floor, or when Adam would lead his friend around the house to show him things. His friend is verbal and not autistic and seems to understand and have compassion for Adam, and I believe the feeling is mutual for Adam towards his friend.

There have been lots of events this past week, most importantly the decision to send him back to the school he attended two years ago, which is not an autism school, but a school for all kinds of wonderful kids. Adam had good friendships there; we could make adaptations in the way work was presented; he could show off his skills and he especially enjoyed the mentoring program when the older kids would teach him. There, he made lasting friendships that have stood the test of time – the same friends attend his camp, and they enjoy each other’s company. His typing stories is getting stronger this summer with our daily practice, and helping Adam with schedules and learning to be patient with me (I’m a single mom… I need his patience) is another important lesson he’s learning with success. Let’s just say, I’ve made these things my mission and I find when I attend to them carefully, we generally do well.

Here’s an example: Every weekend, he wants so badly to go to his grandparent’s house. There, he is soothed and served by my mother. My father gives him strong hugs and takes him on his long walks and subway rides. How could he not love the attention and understanding he receives there? (In fact, he loves them so much, I’m going to ask the TTC if they will take us on a special learning tour). If I don’t take him and I don’t have a plan, he had been getting quite distraught with me. I decided to let it be. I broke part of my foot on Friday and couldn’t do everything he asked. This prompted a teaching moment.

“Grandma’s house,” he demanded on Saturday, looking at me with determination in his eyes. I was a bit nervous he would bite his wrist if he got angry with me; he wears a chewy tube or heart around his neck so if he’s inclined to do so, he will choose that now instead.

“We can’t go today. We’ll go tomorrow,” I said, thinking whoops – that’s an abstract concept and I’m not sure if tomorrow could wait. What is tomorrow when we want it now? I tried making a calendar, and since he can read – I simply wrote in the plan for the days. We went through Saturday, then Sunday…

“Grandma’s house,” he said again emphatically.

“Not today. First we will eat lunch, then we will go for a drive,” I declared, thinking of my foot. Adam got out of the chair, he was sitting in, and I wondered what he was going to do next. Then, he walked towards the rotary phone I bought – to gain his interest in making telephone calls, since he seemed averse to talking on the phone. He picked up the receiver and began dialing. I quickly held up grandma and grandpa’s phone-number, just to make sure we weren’t calling Australia. He put his finger in each hole and dialed each number carefully. He began speaking into the phone, without my assistance.

“Hi,” he said quietly.

“Adam, may I listen?” I asked, knowing that my folks weren’t likely to be home. Sure enough it was the answering machine. “Okay, they’re not home,” I said to Adam. “Let’s call grandpa’s cell phone.” I held up the number for him to follow again and dial.

“Hello” he said into the receiver. Again, I did not know what was being said to Adam, or if anyone was even there. “I’m fine,” he said again. “I love you….can… I… go…to…your…house?” he asked softly, speaking each word deliberately.

“Adam,” I interjected. “May I please speak to grandpa?” I took the phone from Adam to ask my parents where they were and indeed, they were not going to be home. I asked if they would please tell Adam themselves (they were in the car on speaker phone).

“Tomorrow” I heard Adam say softly and he began to whine. “Bye.”

I was elated that Adam made his first phone call by himself. After that, we were able to follow through with the day without a hitch. I asked him if he wanted to go for ice cream, it went so well.

“What flavour do you want…raspberry?” I asked.

“No.”

“Lemon?”

“No.”

“How about chocolate?”

“No.” In fact, if you’ve ever watched Gumby,you might recall Mr.Nopey, from which Adam has earned one of his many nicknames; you’ll just about get the right intonation and speed of Adam’s replies.

I waited for a bit. Then Adam declared…”White!” I realized that someone told me he had tried lemon once and really liked it.

“I think white is lemon, Adam,” I said.

We drove to the frozen yoghurt shop and indeed, he loved lemon.

So today, with my broken foot, I sent Adam along with his friend to Canada’s Wonderland where they shared rides and won a couple of prizes. I’ve been thinking of the typing, the relationship we share when we do it together, preparing Adam the way he needs to be prepared, and Adam’s strong desire to connect. I think when I spend more time with Adam typing and sharing, and when he can spend more time in sincere relationships that aren’t always highly verbal and difficult for him, he is a happier kid. Then, as I finished my Master’s Research Paper (more or less) today, I was thinking of Larry’s line in the movie Wretches and Jabberer’s when he speaks to Tracy about their trip to Japan and Sri Lanka, and they’re in dialogue about how nice it was that they traveled together: “Larry loops twice on that loving fellowship feeling.” Indeed, there is something about the summer that triggers these feelings -perhaps it’s simply more time – and I’ve learned how important these feelings are…all year long.

My Pre Teen Is Born

Filed Under (Acceptance, Adam, Development, Single Parenthood) by Estee on 27-04-2012

It’s happening. Adam is growing and with it, a new attitude. Puberty is peeking through his ten-year-old countenance.

I realized this pre-pubescence more accutely yesterday when he emerged from school. Usually full of smiles at seeing me, he looked cross. “Daddy’s house!” he exclaimed. His dad and the nanny tell me that Adam often asks for mommy when I’m not around. On occasion, Adam will check to see where I am, and he seems reassured. It was new for me to hear this declaration. When he looked disappointed to see me, I felt a mix of rejection and giddiness at the same time. After all, Adam is a boy and I hoped there would come a time when he would want to be with the boys. A boy is supposed to want to identify with the males in his life. But what of me?

“Hi honey,” I laughed, bending down to kiss his cheek. Adam’s eyes were still serious and he didn’t lean in to my lips as he usually does. “Daddy’s house!” he said again.

“You don’t want mommy?” I asked, forcing myself to appear a confident mother. Adam was silent as the teacher and I chit-chatted as usual.

“I couldn’t believe it today,” she said, her eyes wide and proud. “It was like watching an adult Adam. He did everything that was asked of him.” She put his hand on Adam’s shoulder while he was listening and looking at my car. “At one point my sentences were so long, I thought he wouldn’t understand me, but he could follow everything.” I took in a long breath and half-smiled, grateful for her positive report and enthusiasm. I grabbed the handle of Adam’s small red rollaway suitcase he takes to school and handed it to him as he began walking away.

“Thanks so much,” I said to the teacher turning and waving, and then tuned in on Adam who was walking ahead of me to the car. “Hey Adam, do you want to call Daddy?”

“Yes,” he replied firmly.

We got in the car and I called his dad on the Bluetooth. “Adam said ‘daddy’s house’ when he got out of school,” I said, “so we’re calling you.” Adam listened to his father’s cheery ‘hey buddy’ voice, and Adam talked a little — phone conversations are difficult for Adam to respond to. Afterwards, he seemed content.

We arrived home and Adam washed his own hands and headed for the kitchen for his snack, all without my reminding. He had a piano lesson, and Grandma and Grandpa came for a visit. Every time I went downstairs to see how he was doing, though, he pointed to the door. “Go away!”

“Okay, okay!” I said, trying to be jolly but it was a put on. My kid doesn’t want me. What an ingrate…that little schnood! (a word of affection that was developed in my family years ago). My feathers were a little ruffled and I mumbled briefly. What did I do to him today? Nothing out of the ordinary happened. Is this what is to come? My thoughts were skipping all over. Never you mind, Adam. I’ve been here for you all along and no matter what you think, I’m always going to love you. Then I started Googling in search of what age boys start really wanting their fathers.

As much as we want our kids to want us in a divorced situation, I welcome Adam’s need for his dad and other members of his family. It’s a new kind of separation like watching a child graduate or leave the house for the first time. While I am celebrating Adam’s growing independence and associations, I feel that this breaking away is just the beginning, and I’m a little sad too.

Everyone always said to me while Adam grows up, “consider yourself lucky that your kid doesn’t talk back to you.” That was always difficult for me to reason, as I longed to hear Adam’s voice and more complex thoughts, or his yelling at me that he was going to visit his friends. Thanks to his typing and his growing verbal ability, this is slowly changing, but having him grow up is surprisingly challenging in a way I’ve neither experienced nor expected. Is it perhaps more challenging when we have to let more dependent children “go?” You’d think I’d be jumping for joy, and while I sort of am, I missed his need of me. All sorts of “separations” were running through my head — all good, natural and still, emotional.

I want Adam to feel safe to feel and express whatever he needs. To help Adam, I started talking about his dad at the dinner table, and he was very attentive.”Daddy is funny isn’t he, Adam,” I said. He looked me straight in the eye and smiled. “Yes both mom and dad really love you.” I kept talking about love while drawing raindrops and animals with Adam at the table after dinner.

At the end of the evening when everyone was gone, Adam looked in my face; his eyes regained their sparkle for me. Then, he leaned in to give me a kiss. We went through our usual wind-down routine in our quiet house — a shower, teeth-brushing, and I’ve helped Adam become more independent doing these basic things. He climbed into bed merrily in his p.j’s with the dogs on them, carrying a book on How To Draw Insects.

“Mockingbird,” he asked as he burrowed himself under the duvet. It’s a song I’ve been singing to him since he was a toddler. I turned off the lights, snuggled alongside him and started to sing softly.

He didn’t tell me to go away.

Movement Disturbance — not so easy

Filed Under (Anxiety, Autism and Intelligence, Movement Disturbance, Single Parenthood, Transitions) by Estee on 19-03-2012

Adam is going through another phase and it’s time for me to be very hands-on again — new routines that may help his body and anxiety. He’s entering the pre-teen phase, and discovering things that can get him into trouble. I’ve started a running routine with Adam which helps his body calm down. Adam likes to jog (see photo). Yet like the time when we moved homes and Adam started severe spasming, he is now getting physically stuck — his body won’t let him get beyond a repeated movement. I can hear Adam start to whimper and I’m right there. Last night, it quickly became a loud cry. His face looked distressed and it took me a while to get him out of his chair.

“Are you stuck?” I asked

“Yes!” he yelled. Adam is not always able to respond when he’s experiencing this. He looked into my eyes, his body all sweaty, cheeks reddening. He let me hug him one moment, and pushed me away the next. I wanted to cry with him.

“One, two, three, four…walking out the door we go.” I sang my usual Feist tune which helps Adam move. Sometimes I hear him using it himself, which is a good sign that he can somedays. We make it to the shower where he has a “help me” look in his eye. He cried hard and I held him close. My heart breaks when he’s like this. Sometimes I get scared and I have to leave the room. I have to collect myself so I can comfort him, which I managed to do last night. Many times Adam will need to take a toy from on room in order to move on to the next thing. This he will do when he’s calmer but I realized it was a way for him to manage transitions, so I encourage it.

The distress, though — is it the new teeth punching through his gums? The lack of routine from vacation (he usually loves his vacation)? Growing pains? Another issue he cannot yet tell me about? These are some of the things we must guess as parents when communication falls apart. Sometimes he can speak in full sentences. Other days he can barely say a word. Some days he can type independently, while other days, or even moments, he will do anything to avoid typing. Adam is a neurological roller coaster ride and I’m on it with him. We can see what he is able to do and how intelligent he is, when his body permits him. When it doesn’t, Adam will become upset and frustrated. He is not in control of it. This is not behavioural.

On the weekened when he was drumming, he showed another flash of brillance — jamming in rhythm. It lasted a few seconds. Then his body took off in another direction and I had to help him focus again. Martha Leary and David Hill wrote about autism and movement disturbance and I am going to revisit it. Lorna Wing wrote about autism and catatonia. Catatonia is usally later onset — late teens, so I’m not sure if what I’m seeing with Adam is catatonia right now. In thinking about autism and movement, I remembered Amanda Bagg’s video How to Boil Water the Easy Way (and she’s wearing the Joy of Autism: Redefining Ability and Quality of Life event T-shirt). I remembered this video in order to remind myself what Adam is going through and in trying hard to relate to his experience. This is meant to be respectfully comedic. Please be patient with it and watch the entire video to really understand:

Of course, I’ve made the usual calls to investigate ways to assist Adam, and I am always in doubt. Medications are another roller coaster ride — perhaps the monster coaster that I’ve been avoiding, but I also know that I need to find ways to assist Adam with this type of pain. As for me, I often think that while I’ve assisted other people in their journey as an activist and advocate, it is in part to also help myself. I learn so much from others. I’m doing this alone in my home. Being a single parent, at night especially, has taught me that for all the times I think I can’t do it, I manage to. For all the times I think I may want to give up, I don’t. The thought of not being with Adam hurts me more. Talking it out or writing about it is helpful and for all the dark days, a good sleep and a new dawn sheds a new perspective. Adam woke up this morning with a smile on his face again, asking for bread and mustard for breakfast. There is still joy in autism and my son. He’s a fabulous human being! Yet like any parent, I have heartache when I see him in distress.

Other References:

Tony Attwood: Autism and Movement Disturbance
Martha Leary and David Hill: Moving On: Autism and Movement Disturbance
Lorna Wing: Catatonia in Autism Spectrum Disorders

Are You My Mother?

Filed Under (Autism and Intelligence, Family, Single Parenthood) by Estee on 23-02-2012

“Mommy!” Adam looks into my eyes and says my name as if he’s reassuring himself. It’s as if he’s saying you’re my mommy, and that is that.

“Yes, Adam, I’m Mommy.” I say. He’s eyes are glued to mine until I answer him. After I do, he looks relieved and goes back to his business. The look reminds me of that P.D. Eastman story I used to read Adam over and over again when he was a baby, “Are You My Mother?”

I hear “Mommy” after he’s visited his dad’s house. What could he be thinking, I wonder? Is he confused, as many children are, of the other women in their father’s life? If Adam were a more verbal child, what would be the many questions he’d have of the divorce, and his dad returning to his first ex-wife with whom Adam shares half-siblings? I have experienced such younger “typical” children with many questions. I’ve often wondered if people just carry on as if it’s not confusing for Adam at all because they don’t believe that he understands, or at least has many questions that he can’t articulate? No matter how nice people are to Adam over the years, he will always have questions, and he has the right to have them answered. It’s always better to answer children with the facts rather than emotion or pretense, in ways appropriate to their age. I’m taking the inquisitive “are you my mother?” look he frequently gives me now as something much deeper. I’ve read him children’s books about divorce but I think Adam is beginning to have more questions.

The past few days, Adam has also had the flu. It’s all my fault. I caught a bad one and he got it from me. We’ve been down and out for a week now. I know Adam is really ill when he doesn’t move around much and when he’s not eating, of course. Yesterday, he spent the whole day with me sitting on the couch, and today will be the second day. We watched tv, he played with his iPad and rested. He’s body was close to mine — his way of comfort and reassurance. If I got up to do something, he would grab my arm to stay with him.

As a single mom, I don’t have anyone else to delegate all my responsibilities. Yet the feel of Adam’s overly warm body needing mine for comfort and security is more important to me than any bill or piece of paper sitting on my desk. Those things will have to wait. I could complain, but then I realize that I am the most important person in the world to him right now. I have been his rock, his “constant person.”

That’s right, Adam. I am! I am your mother!

Reflections On Our First Decade

Filed Under (Acceptance, Adam, Advocacy, autism, Autism and Employment, Autism and Intelligence, Autism and Learning, Autism Theories, Autistic Self Advocacy, Discrimination, Estee, Ethics, Family, Joy, Single Parenthood) by Estee on 11-01-2012

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.

The Path of Least Resistance

Filed Under (Joy, Parenting, Single Parenthood) by Estee on 06-04-2011

I’m a horrible mother. This thought entered my mind early Monday morning. Adam left for school. I leaned down and he smiled at me and kissed me goodbye, puckering his blushed lips, looking into my eyes. “Don’t forget to carry your lunch bag,” I urged, trying to teach him to become as independent and responsible for himself as possible. He grabbed the blue handle brusqley and walked out the front door in his spring jacket. At nearly nine years of age, he looks like a little man with a miniature brief case. He turns around, revealing a glimpse of soft skin. “I wuv you mummy, yes. B-bye.” I closed the door and headed to the window to wave the way I always do. Adam looked up at me as the car pulled away.

Adam’s birthday was a week away — a few days from now as I write this. It was March Break a couple of weeks ago and he was with his dad. We alternate that holiday every year and it was my time to do my own thing. Am I supposed to have fun? Am I supposed to fall in love again and rebuild my life? It’s so different being a single mother.

I panic, noting the date in my head. Which friends do I invite? Adam doesn’t get invited to very many play dates. Instead, we do programs and school. During programs he at least receives the attention and assistance he needs. There is structure. At least he is happy, but I’m missing him when he is in those programs. I still wish he had friends who came over to visit him in his own home. Adam and I are so dependent on each other for friendship.

Then there is our issue these days of him being terrified going to new homes. We have to work on that the way I said we would a few months ago. We have to visit friends on weekends, for ten minutes or so at a time, at least that’s my plan. We could work our way up to more time and voilà, Adam will be used to new homes. Why haven’t we done more of it? Parenting is tough work, period. It’s also important to enjoy our children. I think it has to be stated even more so when there is such pressure for us parents to be super-charged teachers or “warrior moms (and dads).” We need more balance in terms of what our roles should be and the supports we and our children deserve.

Right, there’s the PECS I have to print out. The team told me I have to label more around the house — they give me a lot of tasks.  More schedules. Safety rules to teach, the phone skills he needs to learn now. I’ve managed to at least put the PECS on the phone. It’s waiting to be programmed. There was that four page instruction list of OT recommendations for evenings in order to keep Adam organized and ready him for bed. There is the homework we do — at least I’m good at  that, piano practice. Adam is exhausted by the end of a long school day and likes to entertain himself on YouTube for a while. But we have so much work to do….

I’m exhausted by all this planning and coordinating of people. I’m guilty that I’m exhausted, some days, and wonder if I’m a good enough mom. I should be teaching him more on the iPad, his Vanguard — crap, I forgot I have to do that too and program it. Then there’s typing, reading books and comprehension questions I have to ask him every day. Reading an article in the Globe & Mail yesterday, Autism: Tracking a Decade of Treatments, and Dr. Cummings states that treatment includes looking “at the role of parents in working with their kids at home.” Holy *&^6. I’ve been doing this for nearly a decade and you want to lay on more?

The reality is, Adam comes home from school, eats his snack, likes to hang around me leisurely in my office or in the kitchen. We do homework, a bit of music and music comes easily to us. He sits beside me and we play duets and it feels like the path of least resistance when we are simply relaxed, doing stuff together. Later, has a shower and winds down for bed. I mean, how much time is there really in the day to be super autie mom? Heck, forget the autie part. There are some moms who home school and nurture genius. Maybe I’m just not one of them. Life has changed.

I try my best, even if some days I feel my best isn’t good enough. They are moms who run those PECS off every day at their computers. They are moms who crack the whip so their kids learn to type and publish books. I try to just keep things moving, negotiating with people in the background, but who are in the foreground of Adam’s life. For me, that’s a full time job right now. I’d guess that for all of us it is.

It hits me. I’m learning my limitations as a mother and as the person I am. I’m learning what I need to do and how to do it so that there is abudance of happiness, not stress, in my home. My laundry list of worries is part of my awakening.

I’m really good at the most important part of mothering Adam. That is, loving him. Lately he calls my name a whole lot more. So I guess he knows it. At least I know it too.

Party time.

“I Had A Feeling That I Belonged”

Filed Under (Family, Inspiration, Joy, Single Parenthood) by Estee on 07-02-2011

Everyone who goes through a divorce will attest, after a significant chunk of time, you can feel cast out, a little lost.

It will be a year since Adam and I moved into our new home on February 14, ironically, Valentine’s Day. As I prepared the house for him to move in, I purchased a sign that I placed on my mantel: “Friends and Family Gather Here.” I knew what was important to me. I knew I wanted to finally build my own place where Adam and I would always belong. This coming Valentine’s Day, although I hate the Hallmark cheese, I’ve got something really special to commemorate: creating love and a warm place to belong. This is a celebration.

People say that you have to live with intention. Well, I guess I did that. I make lists, I put my intentions out there a lot. I wanted to build tranquility, beauty and a happy home for Adam. After some difficult transitioning in the first few months (you can read those posts from a year ago), Adam adjusted. A bitter winter unfurled into spring and summer. Our friends came. Then, my big family on my mother’s side. It has meant so much to me, and I know, for Adam who beams when he sees people here.

Before I got married, I used to play in bands, work in art, write (I’ve always written) and paint. I’m back at it. Adam loves it. Our home is filled with simplicity and lots of music. As I learn to play the guitar again, he strums while I learn the chords. I’ve also taken up my piano playing and Adam played improvised with me for over a half hour last week, proud that he could create something with me. It was just the two of us in the basement, communicating in our way.

I’ve just learned how to play Fast Car by Tracy Chapman on the guitar. I love this song about clawing one’s way to a better life. Belonging is a big theme in my life. Ironically, it’s also a big issue for disabled people.

“Me myself I got nothing to prove.”

Another Lesson In Single Autism Mom Land

Filed Under (Single Parenthood) by Estee on 11-08-2010

We hate it when we see our children get sick. When we watch them suffer, all we say is that we wish we could suffer for them. Honestly, watching Adam be ill is one of the hardest things.  Yet I know what to do. I know how to take care of him. As a single mom who becomes ill herself I am more at a loss.

After that wonderful weekend in New York with my fellow autism bloggers, I seemed to be functioning fine. Then on Monday evening,  all of a sudden, I began to shiver uncontrollably. In the middle of one of Toronto’s hottest summers, I began layering myself with winter socks, sweaters  and six blankets. This began to happen when Adam came home from camp and from time spent with his dad and I hadn’t seen Adam for a few days!  I had to pull myself together long enough to get food on the table, and ready him for bed. I could hardly read the books and play the games I had planned for his homecoming. Adam’s face was beaming at seeing me and I felt like I was cheating him, even though I knew it couldn’t be helped.

After I got him to sleep, I went to my own bed, layering myself with more blankets and a heating pad, knowing full well I must have a raging fever.  Then it suddenly began to hurt when I was breathing in on my right side. I knew I was getting a kidney infection after having one when I was a kid. I have never in my life shivered like that and I knew I should probably go to the E.R. Yet with Adam sleeping, I had to consider if I could make it through the night until I could see my doctor in the morning. The shivering was so bad my muscles began to hurt.  I had to start considering my options.

I am an only child. I don’t have siblings to call on for assistance. I have friends who I would call if it really was my last option, as I’m the type who doesn’t like to ask for help unless it’s critical. Instead, I have parents — the loving grandparents of Adam who take him on long walks in our beloved city or some forest path in the country, for subway rides and to places I’m certain I’ve never been.  As long as they are here, they are always  ready to help Adam and I, always on call, and this is a gift I don’t take for granted. They were eager to come over but I waited a little bit until I could wait no more (because I am stubborn). Dad took me to the E.R. while my mother stayed at my home for Adam. Yet I wonder how I would have gotten to the hospital  if I did not have anyone to call in the night for help with Adam. If I was single without children, I would have just called a cab and made it to the hospital myself. It’s not like that when we have children. With autistic children, if this were the daytime, I would also need extra assistance because Adam would have difficulty playing quietly in a room for hours and hours.

It got me thinking about single parenthood and how we all need support. As single aut-moms or dads, we need extra support in times like these precisely because our autistic children need extra assistance as well. It got me thinking about our interdependence and community and how we need to be on call for others as much as we need others on call for us. I don’t know if it’s an only-child thing, but it’s difficult for me to ask for help.  I also wonder in all of this, if  Individualism may have gone too far, and it’s something that we all know as autistic people and parents of autstic people that we cannot afford.  No wo/man is an island, although we seem to think that we should be.

There are writings out there about how we can seek extra supports. Books like More Than A Mom, for parents with special needs children. There are some good resources out there that can help us with ideas. It’s definitely important to create a back-up plan as single parents, for it really does take a  community to raise a child, and we need our support systems organized and ready. In the meantime, I’ve not only learned another lesson in my new role as single parent, but I am humbled, if not grateful, that there are people willing to lend a helping hand.

A Single Mom’s View of Autism, Divorce Rates and Stigma in the Pursuit of Love

Filed Under (autism, Critical Disability Studies, Disability Finances/Benefits, Discrimination, Parenting, Single Parenthood) by Estee on 29-07-2010

“Before you break something apart, it helps to know how it hangs together.”

 — a quote from SEED magazine regarding art and science and the contributions art can make before distilling the neurological nature of being human.

It helps to know what makes a marriage or relationship hang together. The manner in which we build a union between two people can be pinpointed from the moment it begins. Over time, I’ve come to believe that strong foundations for a relationship are built on honesty, sharing, trust, communication, respect, personal character and commitment. These attributes become ever-more important when we decide to start a family. I might suggest, as a woman with some experience, that a serious review of some of these attributes in ourselves as well our partners, and an agreement of some kind, is of prime importance before starting a family.

Instead we get swept up, probably because most of us are young, in the idea of what a marriage should be instead of looking at the practicalities of construction. Naively, we come to believe that having a baby is romantic and naturally, all we want to do is proliferate the romance. In an age where we are encouraged, and should to some degree, go with the flow, we may have swung too far. Perhaps we do not consider our partners in construction carefully enough because it seems too “business-like.” Yet real life seems to be that fine balance between the two. As the saying goes, all we have at the end are the relationships we’ve built, and might I add, maintained. In a society that values Individualism, it seems to me that many of us have forgotten that it takes a community to not only raise a child, but to also sustain us as adults, so we better be paying attention to how and what we build. As Thoreau said, “build [those] castles in the sky…” but it helps to place the foundations under them. It behooves us to try our best to ensure they are strong.

Let me clarify here that I am a woman writing in retrospect as I am now a single mother of an autistic child. I’ve seen that when relationships fall apart, we blame it on other things. No matter what, external factors will impact a life and a marriage — illness, disability, death and other unfortunate occurrences. We hear it in the marriage vows (for better or for worse, in sickness and in health), yet it seems few of us care to consider the meaning of those words which, in my view, can apply to our friendships and other types of partnerships. I mean, no one can really scoff at those marriage vows even if one doesn’t believe in the institution. We all want someone to see us for who we are, and to love us until the end. Yet, sometimes the two people who came together with the best of intentions cannot endure the stress and do not function well as a team when challenged. In an era of extreme autism fascination and fear we can be ultimately challenged. As such, it is also assumed, and often written, that autism is a main cause of divorce. The unknowing, innocent autistic child is then targeted by society as a result, and it is yet one more reason added to an exhaustive list of why we must cure and change the autistic child as quickly as possible. Instead of considering that all children are a test — that in fact, all of life is one big test — we yet again blame the autism.

I have always found the idea of blaming the autistic child for the deterioration of marriage as something unfair to autistic people. Yet, when my own marriage ended, I couldn’t help but wonder if any of those ideas behind the eighty per-cent divorce rates and autism might even in some small way be true. There can be more stress because our children have atypical needs that are not easily accommodated in our communities. In North America, we are still in the process of legislating what the rights of disabled (including autistic) people must be. We have acknowledged that the rights of autistic people are about thirty years behind of how we regard and grant rights to people with other disabilities. In other words, there is still a journey ahead.

As a parent also living in an age when governments do not understand autism and the accommodations autistic people need to contribute as autistic people, there is more stress when we have to fight to get our kids into schools, obtain financial support, acquire respite help, augmentative communication devices, social skills and vocational training and later, appropriate housing accommodations, access to community colleges and universities with aides and supports that allow our adult children to continue to learn and contribute. By default, we’ve become activists, advocates by no choice of our own. Daily, in some way shape or form, we always seem to be negotiating prejudice in order to get our children and our families what they need. Yes, it can be exhausting in the beginning. I believe all parents need to pace themselves for like life, the journey is long.

I’ve heard that some spouses complain about mothers (let me clarify that the bulk of writings on the topic seem to address the mothers) who take on such a role. “If only the child was “normal,” then the mother would be able to attend to her husband more often. I’ve also heard single moms of more than one autistic child claim that their entire identities are entwined in autism, and as you can see from the laundry list above, it is with good reason. Further, some families that are mixed with typical and autistic children also seem to experience more stress because the autistic child is held up against the typical one and there might be some unhealthy comparisons. As a mother of only one child, I have to consider that some of my stress may be alleviated by the fact that I know of no other way to live. I have no other child to compare mine against. I consider this one of my many blessings.

It might be true that some husbands (and this can also apply to mothers, I do not wish to target husbands, so let me clarify this here even if I do state either “fathers” or “mothers”) do not care to participate in the intensive initial learning curve of raising an autistic child. It is true that some partners bail and leave the brunt of the work to the mother. It is true that in the first years after a diagnosis, and in our new age of autism fascination and fear, autism required a lot of reading, research and self-enquiry. Yet, life evolves, our children mature and we move beyond that “crisis” phase. One can only hope that our partners will hang on until we get there. Still, blaming the mother for the failed marriage is an old idea — we’re either as cold-as-ice- Bettelheim- Refrigerator-Mothers or we are terrible wives. Misogynistic ideas flagellate us and the ideas run so deep they are tough to beat. While there are single mothers truly struggling and are in need of respite, access to services and financial support, I also suggest that these are the caregivers who should be at the top of the list for such support. For after all, it is true that if a mother does not explore herself and her own needs, she will not be able to give herself to her family.

I also think there are all kinds of mothers, those with special needs or typical children. Some are the ones always carpooling, always talking about their children at social functions — forgive me please if you are one of them for it’s your right, but it’s just not my style. Although I spoke a lot about autism in the early years as I tried to figure it out for myself, and I often write about my son on my blog, I do not always wish to talk about him or about autism and I never wanted a bucket full of kids. In short, I’ve seen more women of typical children get so caught up in their motherhood roles that I find it so ironic that mothers of autistic children get blamed for failed marriages because we get so involved in our “autistic” children’s lives! Indirectly of course, the autism, or autistic child is also blamed. In all of my years I’ve tried to always enjoy my passions, even if I’ve had to sometimes put them on hold at various points in my life. Even while my autistic child is a huge source of happiness for me, I recognize that in order to be a good mother, I have to explore and live my own life. I believe that by being my non-super-mom (hence the lack of carpooling) very basic self, I am setting a good example for my son. Mothers of autistic children are also professors and other professionals with successful partnerships and marriages and others are struggling to care for the children on their own while trying to make ends meet. Like everyone, we are also a diverse community. No matter where we are at, finding the balance is an art we seem to always be working at.

A new study debunks the incorrect divorce rate and some of the assumptions that we have mustered that belong to the myth. Dr. Brian Freedman of the Kennedy Krieger Institute found that a child’s autism “had no effect on the family structure.” In fact, he found that 64 per cent of children with autism belong to a family with two married biological or adoptive parents compared to 65 per cent of children who do not have ASD. Freedman’s study acknowledges that parenting an autistic child may be more stressful and it may put pressure on the marriage, which he found in past studies. As I looked back to reference this, I found one executed in the Journal of Autism and Developmental Disorders (Vol. 19, No. 1, 1989): Brief Report: Psychological Effects of Parenting Stress on Parents of Autistic Children (Wolf, Noh, Fisman, Speechly). What was noteworthy to me in this study was an assumption that parents felt that their own personal goals were delayed or forfeited (Kohut, 1966), disappointments with delayed developmental milestones (Howard, 1978), worry regarding future self-sufficiency (Wing, 1985; Wolf & Goldberg, 1986), and the unpredictable, ambiguous nature of autism as important sources of life stress that impose physical and emotional strains on parents exceeding levels experienced by parents of normal children (Bristol & Schopler, 1984; Korn, Chess, & Fernandez, 1978). Freedman seems to have used these assumptions when citing that parents of autistic children suffer a greater amount of stress than parents of children with Down Syndrome or typical children; that mothers report more depression and fathers deal with stress by distancing themselves and becoming less involved with the family. (Source: Kennedy Krieger Institute).

Yet, in an analysis of the National Survey of Children’s Health, data showed that other factors can contribute to divorce, “such has having a child with particularly challenging behaviors with and without autism [bold mine]. For some families, the challenges of parenting a child with special needs may indeed result in straining the marriage to the breaking point.” Freedman wishes to conduct more longitudinal studies to find out how relationships can survive such stressors and what factors may enable the successful marriage. Alison Singer, founder of The Autism Science Foundation agrees that it would be helpful to find the “net stress reducers,” for families, noting also that the 80% divorce-rate myth may have added to our stress as parents and marriage partners.

It might help to add here that Canadian researcher Lonnie Zwaigenbaum in his paper A Qualitative Investigation of Changes in the Belief Systems of Families of Children With Autism or Down Syndrome (Child: Care, Health and Development, 2006,32: 353-369) concluded that families with autistic and Down syndrome children resulted in a reconstruction of values, expectations and actually added to a sense of overall happiness and joy. His team noted that most families believed that their children improved their quality of life. I will concur. Having an autistic child, even with the challenges, has brought me down to earth and made me appreciate many more aspects and people that are currently in my life. My son Adam has been my most profound teacher in helping me see not only the realities of life, but in living with them to the best possible degree.

Still, I thought it really important to discover why so many people believe that families with autistic children in them, are subject to higher divorce rates. They seem to be based in our beliefs and fears, whether they are real or not. We are told many negative things when we first hear the word autism and the idea of having a difficult marriage is not a welcome message. As a single parent, I also have to consider what of those negative messages permeate societal thoughts and the potential for future relationships as society (and potential partners within it) believes that life is so hard for us that we do not have time for the pursuit of happiness.

We learned the extraordinary lengths we would have to take to help or “cure” our children — the strain on our financial resources and time — but the future, even with such investments, looked uncertain. When I consider stress, I have to account for some of the images I have had in my own journey, particularly the early ones. Thoughts like: thwarted dreams, a curbed schedule, shiny white hospitals with fluorescent lights, and spare cots (as seen in the neglected institutions of the 1960’s) popped into my head as I lay putting my autistic son to bed, his hair still baby-soft and face so sweet. The images did not fit with my reality, yet, I wondered how these haunted thoughts would effect the way I dealt with my son. Those images collide against the perfect Hollywood glam of serial daters and spouses with their perfectly coiffed children in gleaming black limousines. Let me quickly add that you will find me often blaming Hollywood for our warped self-images.

By taking a serious look at these narratives and images, it is possible to come back down to reality and back away from feelings of doom. Not only do I know my marriage did not dissolve because of my autistic child, but I became interested in the underlying fears that may prohibit some people from believing that future relationships with autistic children are possible. In other words, I think there is a correlation between our idea that autistic families must have higher divorce rates because,

– we believe we suffer more stress because we feel we devote much more time to the autistic child than the neurotypical child, possibly without considering the issues that many typical children have that can also put a strain on marriages and the outcome of all children is uncertain;

– we have automatically concluded without further inquiry into our belief systems, that single parents of autistic children have it tougher and therefore have less time for current or future relationships (as compared to families with typical children);

– and that our historical view of the disabled as asexual non persons is inherited in how we view ourselves as parents and human beings.

The stigma facing the disabled community still lingers. We see a person with real physical or cognitive issues, and a slew of ideas and images cross our minds. I find it helps to always catch myself in these moments of thought and question the immediately. It’s not that most of us really know anything about the disabled person’s life, for many of us have never had a family member or lived with a disability. History continues to pulse through our veins and when we view disabled persons, we think of institutions, hardship and poverty — not the typical attractive traits we think of when exploring sexual relationships.

In autism in particular, we are all too familiar with the head-banging narrative. It was the first thing we envisioned when we heard the word AUTISM. Whether our children were diagnosed at the age of two, three, four or beyond, that very word altered our perspectives of both our children, and our futures. I can think of no image associated with a word more powerful in my lifetime. It takes so much time and self enquiry to unravel the fear and begin to find that balance again. In addition to unraveling and reconstructing our expectations for our children, we need time to discover what we need as parents to live a full and “balanced” life. As a newly single parent who has spent two years thinking hard about this, I can think of nothing as important as taking care of myself and having an important relationship (one can be happy being single — everyone has to find their own path, of course) as not only setting the right example for my autistic child, but for my own happiness which is as much as my right to have as it is my son’s.

It is said that the most successful people in life are the ones who are most adaptable. We are put to the test time and again. We try to build strong foundations and sometimes the end result doesn’t turn out the way we expect. So we keep trying. I’ve given myself some space and time to create a positive atmosphere and peace around myself and my son. This painful time has been precious and with every day comes an awareness that life is neither perfect nor predictable. We cannot predict the outcome of the autistic or the typical child, as much as we would like to think that we can and for that reason I believe things are meant to fall apart so we can rebuild them again with more wisdom and a healthier outlook. I share this story in hopes that we can all exchange our experiences and become a little wiser. Today, we are so fortunate to have the benefit of more autistic adults showing us what they need to contribute to society. We have more positive examples to live by and this by its very nature gives parents more hope. I find it quite relieving to see that there is a sort of “normal” path of autistic development. We are made more aware of the stigma that influences our thinking and can choose to move away from it.

The outcome of divorce and lack of support can fall on single parents with all kinds of children. Yes, autistic children need more support in a world that doesn’t value them as they are. In a recent conference called Autism, Ethics and Society, based in the U.K., the introduction to the sessions read: “Autism is a common [italics mine] neurodevelopmental condition that has dramatically captured attention in the last decade.” While there is much concern about further stigma regarding genetic testing and other scientific discoveries, there is comfort in common-ness, commune and community. Might we be coming to a new decade where autism isn’t as scary and we as parents receive more moral and practical support (like getting into schools), that ease the mental stress that seems to going along with both marriage and single parenting? I definitely believe that along with new people that will come into our lives, this is the new frontier for Adam and myself. At least it’s my castle in the sky. I’m in the process of rebuilding the foundation underneath it.

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A little postscript today: After writing this, I received a note from Adam’s camp counsellors describing him. It says, “Adam brings charm to the senior 24 group. Like the gentle Snorlax Pokeman, he maintains peace with everyone and shows a love for nature. If it was not for him, we would have never found all the golden eggs.” All I can say is….exactly.

We Go With The Flow

Filed Under (Development, Joy, Single Parenthood) by Estee on 19-07-2010

Adam and I are enjoying what Toronto has to offer. A lover of music, I’ve lugged him to the jazz festival and other performances in our great city. We play piano, sing a lot and I’ve been teaching Adam how to dance. He took it upon himself to dance on my feet. It’s something my dad had to teach me when I was a little girl. Adam just did that on his own. With all of this activity, one would imagine that child would sleep well.

Like many autistic folks, however, Adam doesn’t always need a lot of sleep. I, on the other hand, need my seven hours. He’s still so young, I am unable to teach him at this point to do work, go onto the computer and let me get what I need. In many ways, it can be like having an infant, still. If I left him to his own devices at this particular age, he would turn his room into a gymnasium, climbing all the furniture (which thankfully I bolted down).

It might have been the storm last night that woke him, I’ll grant him that. I heard him yelp. As Adam begins to talk more and find his “voice,” he is also becoming much LOUDER. In the middle of my daze at 2:38 this morning he came into my room and said, “Wake up! Let’s talk!”

My eyes groggy, I couldn’t help but smile, even though I wish this came at seven in the morning. “Adam quiet,” I said, not believing that I’d ask my previously non verbal child to be quiet! “It’s time to sleep,” I pleaded. To this he responded with laughter, like the gods.

I could have gotten really frustrated, the way I have in the past sometimes. I just told him to climb into my bed and I let him chatter away as I dozed beside him, knowing that at least a little rest is better than nothing at all. Occasionally I tried to persuade him with a “sleep,” word or two, and he would at least quiet down for a bit.

At six this morning I gave up trying. I turned on Nora Jones, made breakfast and dealt with my fatigue with a dance. Adam, still energetic and happy took his position.

Sleep or no sleep, I know I should not be complaining.

Our morning dance:

This morning’s song, Shoot the Moon, by Nora Jones:

Where’s My Mother?

Filed Under (Adam, Development, Single Parenthood) by Estee on 06-07-2010

In the sweltering heat, Adam has returned to the camp he has attended for several years now.

“Hey Adam!” the counselors greeted, eager to embrace him under a tent yesterday which did not quell the wall of heat in Toronto. Adam processed the swarm quietly, standing before the semi-circle of enthused pubescents taking his time to assess the environment and some new faces, let alone the emotional excitement and kindness before him. Sometimes it just takes some time before Adam is ready to jump into their arms with a like embrace.

Before yesterday, Adam and I spent the week together — that space and time between the end of school and the beginning of camp. Long, hot days needed to be filled because Adam doesn’t love to stay at home. He loves to go out and explore new places all the time. He likes to walk and walk, and if there is an intriguing pathway or staircase, he might convince me to go along with him. Sometimes I can convince him to come with me too, and so “well-behaved” is he with his now single mom who needs to get “stuff” done. I find myself, in my newer role, asking for his patience with me and he obliges generously. I realized that we have become quite a dynamic duo in our new circumstance, although I admit that being a single mother of an autistic child isn’t always easy in the sense of Adam’s differences and my need to always check my beliefs and expectations at the door.

It also occurred to me that my mother, in a different time and circumstance, spent a significant amount of time with me. She lugged me to the grocery store, her doctor’s appointments. Where-ever she went, I accompanied and I recall what an important life lesson this was. I got to see how my mom acted around the doctor and the dentist; how she interacted with the butcher, the neighbour, the banker, and how she negotiated with life.

In this day and age of programs — and don’t get me wrong, I believe children benefit by them — I not only thought about how children lack going outside to play the way we did when we were kids, but that I tend to get things done only when Adam is in his programs or in school. My parents didn’t have the benefit of such programs. Nor were they considered as necessary in the day-and-age of “go outside and play until the sun goes down.” I suppose our parents got things done when we were out of the house too, but I remember being more connected to their activities overall.

Certainly it’s not safe these days to let our children out all day long without supervision. The world is a changed place indeed. For my autistic boy, safety is of vital concern, friendships are not made easily, and he would wander off and get lost if left to his own devices. Adam’s playmates are aides and kids with aides, camp-mates and like children in music, art or sports programs. Sigh…the world today.

Yet last week, that dear week, I had Adam to myself. Adam accompanied me (almost) everywhere and didn’t complain, in fact, he seemed to enjoy every moment with me. When someone stepped in for a bit to see him, he took me by the hand to insist I come with. All parents know those days when the babysitter arrives and the child doesn’t want mom or dad to leave. My son Adam didn’t express that all too much when he was two and three-years-old. At eight, he is able to show it more.

And so, last week when I left to do some more grocery shopping on my own Adam asked his aide, “where’s my mother?” For a child only beginning to talk in sentences, and ones that are still very hard to come by, it’s quite a question. Perhaps he had been thinking that all along. In those earlier days, we parents may be inclined to think that just because our autistic children are not verbally articulate, that they are not wondering, thinking or understanding so many things the way a typical child might. Surely this sentence, relayed by his aide to me, was music to my ears, but I’ve never ignored the fact that I think Adam often wondered many things.

As I walked into the house carrying a load of groceries, overheated and glad to be home, I saw Adam at the end of the hallway in my kitchen, eating his snack looking at me, beaming from ear-to-ear.

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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.