Return Home From Sri Lanka

Filed Under (Adam, Estee, Travel) by Estee on 31-01-2012

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.

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.

Off To Sri Lanka Soon

Filed Under (Estee, Parenting) by Estee on 07-01-2012

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

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

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

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

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

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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.