In Retrospect

Filed Under (Uncategorized) by Estee on 28-04-2009

 

I’ve been reading the thousands of pages of Adam’s journals I’ve written and kept track of over the past seven years. It’s a lot of tracking. I’ve tracked everything from the structure of our days, the logs of his work and progress, his first “steps” in every aspect of his development, those early ABA charts, other progress reports, my to-do lists….I still survived on severe sleep deprivation (Adam never slept through the night), life obligations, taking care of four other step children (I always felt guilty at having to ask them to quiet down when Adam came around not knowing that Adam was autistic and extremely noise sensitive at the time), autism activism and advocacy, three of my own surgeries and three of Adam’s (ear and dental), and of course, my own struggle with accepting the various aspects of the journey. I have so much paper that I am quite surprised and fascinated that I look back on those old days as no big deal. Yet, one can say that in retrospect. I could tell parents all about acceptance and the journey, but each of us has to go through the years and experience ourselves. When I write like this, I have no idea if it fully sinks in to a “new” parent. There is reading, absorbing and then there is knowing. I can see it through my notes, all the queries, all the research I did, all the intensive time I spent observing and playing with Adam. I see who I was and who both Adam and I have become.

Other than pejorative referencing of autism as illness, and of course, dangerous therapies that risk a child’s health, well-being and life, I can discuss autism with so many parents with different attitudes, which is the gift of time. I meet parents who have taken a different route, who think differently than I do, and in most cases, it’s pretty much okay (again, unless they want to describe my son as of lesser value and do not accept him, then get out of the way).  

We are all on the same route taking different paths. Many of us see things differently. There is still work that needs to be done; questions on the nature of what it means to be human and a full acceptance of our children by and in every facet of society.  I do not think that our kids need to change themselves in unnatural ways (an autistic person will always be autistic) in order to fit in, for being a part of this world is a constant compromise, but one should never compromise one’s true nature. As a woman going through a divorce who has made enormous compromises, this resounds so strongly within me these days. Being a woman in this world somehow draws me closer to others who need that strong sense of acceptance and belonging. I know I write as a woman in a particular circumstance, but there are dads out there too who are going through the same journey. I do not want this post to sound this is for women-only. We can only belong when we first accept ourselves.

I think I’ve survived it all so far pretty well, maybe even more than “pretty-well.” Yes, I have feelings, and no, it’s really not easy. One doesn’t have to pretend to be strong in order to be strong. Strength comes from not being afraid to talk the truth — in not being ashamed of being sad, weak, in need of help, in finding the humour in things…

Divorce, cancer, autism, stigma, and I’m still standing. Adam is still happy through it all because mom doesn’t believe that anything less than fortitude, truth, and a positive attitude is warranted in this world. Mom believes that Adam is good enough as he is, and now, as a single person, that she is more than good enough as she is. She expects Adam to clean up after himself, go to school, continue learning and contributing to the world. I expect no less of myself — of fulfilling my own purpose. Everyone, no matter what challenge, can press on. We all have a purpose in life that needs to be fulfilled. It is our hope, our inspiration, and our difficult, yet still inspiring, mountain to climb.

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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.