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A Farewell; A New Beginning

Filed Under (Adam, Advocacy, Writing) by Estee on 28-10-2010

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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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.