He must go out into the world….

Filed Under (Adam, Autism and Learning, Communication, To Get To The Other Side) by Estee on 28-01-2010

Adam is almost eight years old. I can hardly believe how the time keeps marching by; how the year of separation from Adam’s father has also gone by. Soon, Adam and I will be living in our new house and rebuilding our lives.

Adam is changing and I reminisce from the early days — when he was diagnosed at 19 months of age, how I started this blog back in 2005. He is becoming more curious, more adept, stronger. He is always learning. He gets frustrated. He still cannot communicate with words very well. He must use a device. He does not understand, I believe, inherent dangers as he explores his new exciting world. Laundry chutes, small dark corners are inviting spaces for all little children. I teach as best I can with a firm “no,” a new rule that he can easily comprehend, and a stop sign posted to various areas of the house. It may not be “designer” but style makes no sense where safety is concerned.

Adam is also heading out into the world. Yes, he has his aides. But as a newly separated person who now must share time with Adam’s father with regards to Adam, I find myself during lonely nights thinking about how life is always about letting go: of fear, of things, of little children growing into bigger independent children (or quasi independent in our case). As Adam grows, I must learn to let him out into the world with others so he can learn more. It is a great challenge for any parent, and perhaps even more punctuated when one is a single parent. And as all things with our children as we watch them grow, it’s (delightfully) bittersweet. Adam would grow up resenting me if I held him back and did not let him explore. I have to let him do it in safe ways, in stages. When he grabs that sharp knife to cut a piece of fruit, I have to teach him with a dull knife (and with supervision of course). I have to let him explore dark spaces by creating safer dark spaces. I have to let him jump around the house, not on furniture where he may hurt his head, but on equipment set up for the task of jumping. In the case of Adam and his neurological needs, I also have to LET him be who he is and get the feedback he needs.

He needs to run, he needs to jump, explore, and yes, eat lemons. I would never be able to hold him back to change these activities because they don’t look like typical play. I need to provide him safe avenues to explore these things. Instead of viewing these things as “overwhelming” because they are not what all typical children necessarily do, I must learn new ways of helping him explore. While there are not as many programs and “how-to” books out there, common sense, time, and a deep breath help me figure it out.

It’s the same at school and we are lucky right now to have a school that allows Adam to explore safely, that allows aides, that allows us to bring in adaptive technologies and programs that help Adam learn in the way he can. But when people first meet him, I am starkly aware of how they will measure him — what “competency tests” to assess what he does and does not know that are delivered in a way that we take for granted, and perhaps that Adam would not be able to respond to. Far less effort (and money) is paid to adapting those tests so that he could respond — like visual options for answers, multiple choice. Adam is extremely visual and “performs” well when given this option. And I write this because I saw the movie NELL last night with Jodie Foster. I have been calling Adam — among many nicknames like boo boo bear, moo moo, Adiboo, Adamame… and Chickabee — the nickname Nell uses in the film. I must have picked it up a few years ago when I first saw it. I love the movie Nell because it reminds us that humans can create languages that perhaps not everyone understand easily and in the way we are used to, but how we create meaning.

And Adam communicates, indeed. He has a language that I’ve learned to, believe it or not, take for granted! But as he goes out into the world not everyone will know his language. He would be given those “competency tests,” and maybe even fail because they don’t measure in a way that addresses how he can express what he knows. So yes, my Adam now goes out further into the world. And yes, we have to teach him to communicate within it and learn the more common way of communicating. But I still believe he will and should always keep his mother tongue.

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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.