Estée KlarThe Joy of Autism

I have serious jet lag. I returned on Saturday, after supper time. It was a journey of thirty hours. The route home was Colombo-Bankok-Beijing-Toronto. On the last day, I realized I caught my first Sri Lankan cold and I suffered all the way home, making the thirty hours feel like sixty. Seriously, you can’t tell the difference after the first twenty-four.

I returned home to my cherub. Adam was waiting for me and the transition from his father back to my home was a happy one. I was worried the little guy would be pissed with me for being gone twelve days. The opposite was true. I tried to avoid making face-to-face contact with Adam, since I had come down with a serious sniffle, muted by a continuous in-flight feed of Contact C. He would have none of that. Adam grabbed my face, our round fleshy cheeks squished together, and he continued to kiss mine all over. Ah well.

We are happily reunited and I am on the mend. I woke at midnight tonight and forced myself to say in bed until three this morning. There is a wisp of white snow on the ground and I gather today will be another gray one. I am recalling all the sights and sounds of my trip, especially the warm light and emerald colour of rice patty fields.

I will send my cherub off to school in a bit. Later, I will hopefully find some words and sentences that do justice to my first trip to Asia. In twelve whril-wind days, major flight time, and time zone changes, I still feel silenced by overwhelming differences. My experience is still blend of flickering images and sensory recollections. As I blend back into my daily life here, I realize it will take me a few more days to articulate what I’ve experienced. I know full well that I’ve only taken a small sip of the land of Serendib.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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I’m going to ramble about good feelings. Following the shock of last week — hearing that Adam’s class was going to be dismantled — I felt like I was in another hurricane. That short story ended quickly, though, as the school came through to accommodate Adam for next year. They too understood the tumult he has been through. For me, it was a wake up call to our future. It’s not that we don’t know something’s coming, right? It’s interesting how something has to happen to get us to the next level. The occurrence reminded me that it’s time to leave the past behind, and get back to learning the next phase of advocating for Adam’s needs. It’s also time for him to learn that he’s autistic and what’s involved in that so he can begin advocating for himself. It’s not that I don’t think that he knows he’s different. What he needs is a toolbox of self confidence and skills to be able to stand up to the people I stand up to now as a neurotypical person.

It’s another reason why I love Autistic Pride Day which is on June 18th. I imagine what positive messages we can give to our children while they are growing up (for there are otherwise too few) — that difference is neither good nor bad, it just is. We are all unique individuals with differing needs and strengths. It’s important to be proud of ourselves, even if we have our challenges. We are proud to be autistic, or family members of autistic people. I would like to help empower and enable Adam in this way. A walk next year (as there is little time to prepare this year), would be a wonderful, peaceful way to walk proud.

Change has blown in in so many ways. It is because of times like the school news that I need to celebrate Adam, myself and the people we love. We are losing his aide of seven years and are welcoming a new one into our lives. We’ve hired a new male aide worker on weekends who I hope will become a part of Adam’s life. His team is shape-shifting and I see Adam soon sitting around the table for part of our meetings and later, for all of them as he tells us what he wants to do with his life and how we can best support him. Sometimes all of these changes literally knock me off my feet they are so exhausting, which is why I take as much time as I can to beam. There is love all around and I don’t take it for granted. There is a person in our lives and lots of music and good feelings all around. I no longer feel I’m swimming way off in the deep ocean. I believe I am arriving at shore — or the ship I’ve been building is at least sturdy enough to lead us there.

The really simple things make me extremely happy. The pummels and disappointments — whether they be from our past or about school — make these moments even more special. I can tell we are settling as I can’t wait for Adam to come home from school. I used to be so tired and worried about Adam’s distress. Just last year he was spasming so much he needed an EEG. Now, he saunters into the house with his lunch bag, flicks off his shoes and runs down the hall to the kitchen where his snack awaits. After reminding him to wash his hands, he perches himself at the counter and noshes at red peppers or fruit. If that’s not enough, he’ll ask (lately) for popcorn with vinegar (yes, that’s right). He’ll get the popcorn himself and after learning that pressing too many buttons on the microwave actually locks it, he turns to me and asks, “Popcorn, puweeze.” He is not quite satisfied until I open the package and turn on the microwave. Then, he’ll go into the pantry and grap the large plastic jug of white vinegar. “Vinegar, puwezze.” He hands over the heavy jug so I can pour it on top (yep) on top. He moves back to the counter stool and gets the popcorn from the bottom of the bowl first so it’s soaked, and chews on one piece at a time

I can also tell we are settling by our routines. Adam nestles into my arm at the end of each day while I watch Peter Mansbridge on The National. Sorry, Peter, but you put my son nicely to sleep. Adam his happy to watch with me quietly for a while. Then his eyes begin fall shut slowly and when he’s breathing deeply, I carry him to his bed, even though he keeps getting heavier. As I pull the baby blue blanket right up to his chin, he is grinning with his eyes tightly closed. “Goodnight my sweetheart,” I say. I kiss him and leave the room, remembering myself at his age, just as happy when my mother or father did the same.

I feel like Jodie Foster in Little Man Tate. Sure, we are not as verbally articulate, but we are no less expressive. We understand each other. We have our many ways. Like them, Adam and I lie around and watch the clouds together; and I hold him tight when the lights are low and the house is quiet except for the whir of traffic outside.

Without disturbing too much privacy, I think there are only a few things I can share as Adam’s ally — simply because I need to express these good times — like his love of music, for one. Adam also has some cool dance moves. This is a combination of raising his arms up in the air to swaying them with the rest of his body side to side, to a full on rock on jump and hand flap — and let’s not forget his electric smile. Adam is increasingly adept at piano and tries his hand at guitar (I think he prefers guitar — no lessons involved). There is no question that he has artistic ability (see photo).

This could just be becoming the happiest time in our lives. That’s why the news of last week was so upsetting because it takes so long to find balance and when there are additional challenges with a child, the last thing one wants is more. I know there are more challenges ahead, but today I decide to take in the light breeze.

I was once told when Adam was first diagnosed that this was going to be a “marathon, not a sprint.” Well, after a few years now, I don’t just think it’s a marathon…it’s Ironman. All of the work is really important, especially in a world that still does not fully understand and accept autism, but it’s not everything. It’s not what Adam will remember or what will necessarily trigger his heart. He’s going to remember when I carried him to bed and pulled the blanket under his chin. He’s going to remember lounging out in the yard and watching and naming the clouds with me when I’m gone. I think the work that we do goes without saying, but it’s also important to stop and listen to the music, to experience love. It’s everything.

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Adam has a new teacher at school. Immediately, she ripped down the clutter on the walls that distracted Adam. She has Adam learning about money, in “taking circles” with the other children. Reports are Adam is doing well in school and wants to pay attention. Before this teacher, we were worried about Adam’s attention and even tried Ritalin for a couple of days. It just took two days and I couldn’t take watching my son transform into a person I didn’t recognize — his eyes glazed over and his legs twitched uncontrollably. Adam lost his joy and personality which seemed like much too big a sacrafice even though he was completing tasks like a robot on speed. I polled numerous parents who do have some success with this and asked how long it actually takes to get the meds “right.” Some parents said “years,” and “never,” because a child continues to grow.

I don’t have the stomach for it. That’s what I’ve learned as Adam’s parent. I look at some parents and see what levels of creativity they have in awe. I can’t muster the energy to build castles, a volcanic model… yet. Okay, I’m not that bad. I do lots of things with Adam. Mainly, I enjoy just being with him — going for walks, to the park, drives, to restaurants, and playing games here at home. I enjoy learning to play music again and Adam often plays the piano next to me — I like that and it comes naturally. In the summer, we enjoy swimming. I just don’t have the stomach for the endless trial and error to get Adam to become “normal.” In the quest for a cure, I have seen that Adam loses his essence. So it’s official: I can love him and have my limitations too.

In my journey, I’ve learned that other people have to be his teachers now. It is good for Adam to learn from others. I see him becoming more independent and communicative at home. I am really good at loving him, and well, being his parent. I get top marks for that, I think. So I’m thrilled that one teacher can make such a big difference — that Adam can pay attention without medication. It should make us all think, as parents, what we can do to help proliferate this need for great teachers and schools — to create lucrative enough opportunities for teachers to want to stay in the profession, and with our kids.

Sure, I don’t know what the future has in store. My ideas of it are always shifting. I’m just trying to have faith that everything will work out the way it is supposed to.

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On another note, I’ve been wanting to write that Adam had his ninth birthday party on Sunday. Most of the kids from Adam’s school have never attended a birthday party before. Like them, Adam rarely gets invited to parties. It is but one unfortunate fact of the autistic life that people need to know and understand. I try to create opportunities for socialization and had typical kids in with the group. I hired a company that brings snakes and an alligator in order for the kids to be engaged and kept a lot of structure, which was successful. The “special needs” kids were so grateful and polite. I heard a lot of thank you’s that day.

Later in the week, my mother sat in my kitchen. “That was the loveliest kids birthday party I’ve ever been to,” she said. “The kids were so nice.” Her face changed to a look of awe. “Usually you go to birthday parties with typical kids and they are all spoiled and complaining. These kids were so mature.” I felt eubuillant when she said that because I felt it too. If only everyone knew. If only everyone knew that the kids with challenges are not “behavioural” because they are spoiled, but because something in the moment is truly frustrating and difficult. If only they could have seen what my mother recognized.

Maybe we’d be invited to more parties.

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Adam brought home a large scale drawing he made with his teacher — about 3×3 feet. He loves animals and started drawing them. Then he starting adding features. He shared the coloured pens, asking his teacher to draw things, using all his own languge, and adding different characteristics.

In this massive drawing, for instance, is an icecream butterfly, a snake dragon with zebra stripes (again, I’m using the language he uses as he is talking more all the time now), a dragon horse, a zebra pig, a strawberry cat, a cookie elephant and lots lots more.

I am loving this — marveling at the picture and how Adam made his imaginary world come to life and how, perhaps, he might be experimenting with ideas. Now, I’m thinking of Adam as my little Hieronimus Bosch…junior.

Ah, that wonderful autie mind!

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Last week, The Weather Network announced that we were about to get a huge storm. The city prepared, remembering several years ago, when the army was called in. Last week, everyone prepared. Schools were shut down. I received an email from Adam’s school that there would be no school the following day, anticipating the oncoming emergency.This was going to be serious.

The next day, Adam and I went for a walk. The streets were quiet and I scoffed at what Torontonians think of as a weather emergency. “Weathertainment,” I’ve heard it called. To get an idea, check this out:

It snowed last night too. Today, Adam and I plan on taking the hills, facing the “danger” head on. Yes, we are going tobogganning. Remember those days? When we’d go out and play all day in the freezing cold and our parents didnt’ give a crap if we got frostbite or not; when we went to friend’s houses who were sick anyway? Ah…those were the days.

—-

Adam goes to Holland Bloorview for art classes. There, he gets to be surrounded in what I call a little piece of heaven, that place. The art studio is one of the most magnificent ones I’ve ever visited. The art projects are innovative.

I sit around the lobby while he takes his class, and I get to watch other people, talk to others. In wheelchairs, braces… people of all kinds, I feel more relaxed and human than any place else on earth. I study my books, think about my writing. I’m taking a memoir class with the wonderful person/writer, Beth Kaplan. Yet, I keep trying to focus on the scene…the scene….zoom in the on the SCENE, I think. I’m trying to tell too much story to soon…I rush. Story of my life. My mom said since I was a little girl, I always wanted to know what was going to happen to me. The wisdom of slowing down is just beginning to absorb. But then again, we can’t change our essential nature. Maybe all we can do is train it a bit.

Then, for one of those moments that sink me, I think I can’t do it. Just who do I think I am? A writer? Yes, she assures in one class. It’s part of a writer’s list of fears.

It’s time to pick up Adam. I gather all my clothes…all of them…the UGG boots I took off because they make my feet too hot, and my heavy shearling coat (for the Toronto weather), and big bag of books I’ve brought along. I’m weighed down as I shuffle towards the glass studio.Adam is wearing an old shirt as a smock and it’s covered in paint. He’s in the corner near the bright twenty-foot window, a malleate in his hand, pounding a large piece of clay. He then takes a little piece and puts it where he wants it to be, and then pounds again. I stand back and watch, and then approach when I think he has taken a break. He sees me and walks towards, smiling. I lead him back to the lump of clay. “What is it?” I ask.

“It’s art,” he says without hesitation.

It is. I wish I could silence my inner critic.

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We talk often in autism about a dissonance of skills and “uneven learning.” It’s an easy thing to notice or say, but it doesn’t seem that easy to accommodate. Not easy, because we still have the expectation that an autisitic person must respond typically.

Adam has had quite the transitional year. He has gone through parental separation, moved to a new home with me and started a new school where the expectation is that he sits at a desk. His sleep has worsened, and his avoidant behaviour in doing certain “tasks” has begun. And yet, my Adam is talking in full sentences more often, is telling me how he feels, and can play a mean “reciprocal” game of I Spy with me. He can draw well (if given the chance) with perspective that is more sophisticated than his same aged-peers, even if his motor planning, that is line, is not as sure and resolute.

I have to say that when someone talks to me about Adam’s “behaviour” I do think in the old-fashioned sense that he is not behaving “well,” as opposed to looking at what’s causing the behaviour. It still pops up from time to time, and I am concerned that implicating behaviour is a way to not only blame Adam, but put an expectation and onus on him that is not fair. That is but one legacy that ABA left behind, although I’m not commenting on some of the methods used by the practice as part of an overall pedagogy. I bribe him a lot to get things done.

Adam needs physicality, lots of movement, interesting content, and a chance to respond more by typing. He needs more preparation, I believe, to start his day, and a different kind of structure in it. What I mean is, by 2 p.m., the boy is tired. I am still trying to figure out what that structure should look like as I orchestrate new programs and activity in his life. Because, Adam is no longer a baby. He will be turning nine this April.

It seems to me that we are learning about how autistic children learn, or at least I’m learning everyday. My process of learning about Adam and trying to work with his team of teachers and supporters never ends. Sometimes, I sit and stare at the wall, I admit, and wonder why we still haven’t figured this out. Maybe I was secretly hoping we would have by now.

I’ve hit the books again. I’m watching Adam closely as he has trouble falling asleep at night. I watch my own responses to him when I feel tired and frustrated. And one thing that surprises me is that I still am not giving up. I don’t want to blame Adam for being autistic. I want so badly to support him and to have support. I am still trying to articulate what accommodation really means for him. I am constantly evolving my attitude, and behaviour, towards him.

Soon Adam will have an aide who will take him into the community, to help him be a part of it, make friends, take theatre classes and go skiing (he starts next week!). I hope to get him into Special Olympics and keep working with those who have helped us along the way. It is clear we don’t have all the answers yet. But if you have some success stories to share, we’d sure appreciate them.

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Adam tried to pull me out the door with him in the morning. Since I returned home from vacation or after weekends apart, he tugs at my hand. He is bundled in his heavy red winter coat for the minus twenty-something temperature we’ve been having in Toronto the past couple of days. I know he has been effected by my absence. With separation and divorce, all kids and parents must traverse this similar path of custody arrangements.

So, these absences are not entirely within my control, although even married, parents do have to leave their children for work, for travel, for one circumstance or another. Adam’s Christmas vacation is split between mom and dad. While I’m not with Adam, I want to build my life. I am trying to figure out if there is a way to refine the fine art of living life and parenting. I’ve concluded that the best way I can be Adam’s parent is to remain my simple self, and including him in all of it. Sure, I have to accommodate the way in which he can be included in it, but that’s a different post.

Once in a while I get a report from his aide or teacher that he has asked for mommy while I am away. I can’t tell you the wave of love and trememdous guilt that overcomes me when I get those reports, or lately, even a short email now from my son. Then, I tell myself that this is the test of our love: that we can miss each other and always return, the universe willing. Still, for a young boy, typical or autistic, a parent’s absense must feel like the end of the world. Adam can’t tell me the depth of feeling he must have, but I can imagine it. I can remember what it felt like when I was a child and I use those memories to help me in the way I treat Adam.

“Come with me,” he says as he grabs my hand. Then the words don’t come — he simply tugs. His cherub cheeks peek from behind his ample hood with a tuft of faux fur. His eyes begin to look distressed.

“I can’t come to school with you honey,” I implore. “I will see you in a few hours.” He tugs harder, my body leaning into the warm hallway, his boot already on the icy front step; I’m afraid he will literally tumble out the door. He tugs for as long as he can before I kneel down and face him.

“I love you. I’m proud of you and I will be here when you get home,” I reassure, rubbing the sides of his down-filled arms, caressing his cheek, and then kissing his small, pouted lips.

He lets go reluctantly, dragging his knapsack behind him on the driveway and climbs into the car. I stand at the window with pangs in my stomach — to let him know I am watching. I am also jubilent at the same time, remembering how my mother did the same thing (the apple doesn’t fall far from the tree). I wait in the window, like my mother did with my father and I, to let Adam know the depths of my love. I’m pretty sure he knows this innately, but still.

The car pulls away and he looks at me longingly through the backseat window. I wave thinking that this is, paradoxically, one of the best moments of our lives.

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About once a month Adam cannot sleep. It’s so regular, in fact, that I’ve come to call it our “monthly trip to Europe.” The time zone change would feel about the same.

So it was we had another one of those nights last night. It’s been a bit of a crazy week — I just returned from Costa Rica and am trying to pull myself back together. Adam also had some vacation time with me down south and then spent the rest of the time with his father. He returned to me on Monday and I was expecting him not to sleep on the first night of his return home — not the fourth.

Last night, we also played a game of I Spy. We used one of Adam’s books for this. For those of you who are not yet aware, Adam is not a fluent talker. I was quite surprised that we could play this game back and forth for about thirty minutes.

“I spy with my whittle eye something that dances,” he said in his tiny staccato voice, so soft like a whisper. While Adam has typed a few sophisticated sentences before, we’ve rarely had such interchanges, let alone ones where he’s asking me to guess the object by naming its attribute.

“Is it the ballerina?” I asked him, pointing to it.

“Ballerina, yes,” he replied.

Maybe his head was dancing for the rest of the night. Dreary eyed today, I’m still so very thrilled about the interchange.

A belated Happy New Year to everyone, by the way. I tried so hard not to blog while I was away.

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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.

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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.

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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.

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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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