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.
ESTÉE KLAR
TORONTO, ONTARIO, CANADA
Writer/Curator/Founder of The Autism Acceptance Project. Lecturer on autism & the media, and parenting. Graduate student Critical Disability Studies, York University. I like to write about our journey, musings, attitudes towards autism.
Here is to you Estee – its amazing how much you have been through and how you are so strong
That was just…wonderful.. “we can only belong when we first accept ourselves” How very true..I have learned more about myself and acceptance by raising all of my kids. Funny, I too look back on the very difficult early years with my boys-and see them as no big deal as well. I am a very different person now. . I have grown side by side with my children. They see me struggle and fail and succeed and grow, it gives them leeway to do the same. Yes, we all have a purpose in life-we all have value. Thanks for that post-it was something I needed to hear today.
Great site Estee. I was referred by a friend and have spent a good half hour reading some of your posts. Great work that you are doing. Keep it up.
Wow, sometimes we think we are the only ones going through constant struggle until someone brave like yourself Estee lays it all on the table for the world to see. I often wonder why we are choosen to do this , some days I feel I know but others I am not so nice to the point I have screamed out at the universe asking ” How much do you think I can handle? I am a positive person by nature but I openly admit like yourself that this can be extemely hard but looking back at it all I guess there is so much gradittude to have come through such an ordeal that it ends up being not such a big deal, but I think it is only because it was done in so much love. This love is the same as when a Mother gives birth and once she holds her child , the pain quickly goes away and through time it not so hard looking back on the actual labour. So we can look back and actually not remember the extent of the frustration and pain! Good thing!
I wish you success and you continue to reach out to the world in your own way.
Bravo Estée. All those records you kept over the years will be invaluable in remembering those precious years of Adam’s childhood.
Hello Estee. It is good to see that your site is up again. Reading your blog has been part of my routine. I agree with you that each family has to make their own journey. Whatever path we choose, as parents, we do it for the love of our child. I learned that to pave the way for our child to be accepted and included, we have to lead it. Recently, we attended a community dance. I took my child to the dance floor and we danced like the dance floor was ours. Half an hour later, our friends and acquaintances were vying to dance with him. I did not have to say a word. It was the most amazing thing. The look of happiness on his face was priceless. He didn’t need to say anything either.
Keep them coming, Estee and say Hello to Adam for me.
Warmest regards,
Marilen
I want to thank you. I find great comfort in your words. It is a welcomed relief to read your words that have been my thoughts and know that I am not alone. I will not let autism define my son. He is not autistic. He is an intelligent 6 year old boy that loves the ocean, swimming, playing with legos and giving hugs and kisses that happens to have autism.