In Praise of Support Workers

Filed Under (Transitions) by Estee on 15-02-2011

I am very sad this evening. It is the sadness of knowing that someone who was part of your daily life has meant so much to you — who has been the centre of our lives.

This person is Adam’s aide. She has never wanted to be named but is in the background of all my posts since 2005, obscured. She is called Adam’s “support worker” in an upcoming issue in Today’s Parent called The Joy of Autism. The March issue hits the stands February 21st.Today, Adam’s aide has given us notice that she will be ending her support of Adam in order to move on to something else — time to grow, move on, as does everything in life. Who knows if she’ll continue her work in this field — she thinks about doing other things now, and it’s all natural, all good.

Yet I sit here alone this Tuesday night. Adam is skiing this evening and knows not that his life is about to change… again. “He’s a duck in water,” says my mom on the telephone as I’m in the middle of writing this. “Wow…wait…wow…look at him go!” I hear others in the background. It’s only his second ski lesson.

He probably can’t remember being without his aide worker. She entered when Adam was 20 months old — just over a month after he was first diagnosed with autism. She has been with us on all the ups and downs of our journey. We have made decisions together, and she has implemented them on a daily basis. She helped me when I was going through cancer and divorce in order to provide extra support to keep Adam strong, while I was not.

It has been a hectic day, but not just for this reason. Another urgent matter helped me shove the news I received early this morning into the background of my day. Yet, when I returned home and all was quiet, and I read that article, the black and white print jumped out at me. She is all over those four pages; the “joy of autism,” the ride — me, Adam and his “support worker.” I am still crying, mascara channels down my cheeks.

Does it take this kind moment to realize how much you can love someone? It’s been eight years — I’d say that’s a good chunk of relationship. I’ve always appreciated her, but parting is such sweet sorrow.

To all you aides, shadows, support workers and therapists out there (there are so many names to call you) please know how much you are, and have been so utterly appreciated. How lucky we are to have such relationships.

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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.