The never-ending labyrinth

Filed Under (Anxiety, Behaviours, Medications, Movement Disturbance, seizures, Sensory Differences) by Estee on 28-06-2013

Adam’s jerking has increased as it was a few years ago… when we did the EEG and they said he had no seizure activity. My own anxiety feels seismic, and I wonder when all of this can explode, get worse, or if all my calming strategies for Adam are working. I’ve spoken with his doctor almost every-day this week, his school, his OT – doing what I feel I must to get all the information. It may be information I’ve learned along the way, sometimes we see things differently or new things at different points in our lives. We’ve generally avoided many medications but over time, things can change. Although we will visit the neurologist, it’s not time to act yet…

I hope that camp again abates Adam’s jerking and the stress he must feel he’s under. His basement flood, the end of school, a new baby on his dad’s side of the family. Sometimes I think that Adam is the strongest, most “controlled” person I know! When I think of his body and how hard he works to get through his day, I just can’t believe his strength!

Every day I ask Adam how he’s feeling. He usually says “I’m fine” with the same tone. Sometimes I get a “good.” Since his allergies, turned viral croup turned jerking and biting (conflated with the other changes in his life) this has changed – “I’m feeling sick,” he says. At least he’s loving his chewy tubes! He knows I love him too…that’s a good place to start. I know he needs my counts to five, my voice to help him move more days than others. A weighted vest seems to help and holding things in his hands. And although everyone is working as fast as they can for him, his space in our basement is not yet complete. It’s the space where he can engage in a lot of sensory activity.

I’m feeling sick – I don’t take Adam’s words as gibberish. His words may be few, but they are powerful to me. So I am trying to help him knowing the labyrinth we must travel through yet again, knowing that for every medication that is recommended, we would be treating a symptom, and where my real anxiety begins. It is here where the term autism, and perhaps its reified status, falls short in helping medical conditions for autistic people. I guess I don’t believe in rushing in. There’s just too much complexity about Adam and how he feels about things that this needs lots of time. Autism is too broad a term and Adam can appear as if he has Tourettes or seizures or movement disturbance like Parkinsons or at times, catatonia… Gah! He would fit just about every profile, my little guy. Anxiety and heightened arousal (either positive or negative) may trigger Adam’s twitching or biting. Some days, just working on calming and ordering his body is work enough for him.

As I try to help Adam, and want to abate his pain as opposed to sedating my worry, I also try to finish a major research paper and am thinking of Larry’s quote from Wretches and Jabberers: “autism is not abnormality of brain but abnormality of experience.” Here, I question autism as a co-production of that experience, the way must describe it with language that is always half-formed, where normative views and experience may alter Larry’s meaning in the way we perceive it, and where real pain of such a different experience may be missed or ignored because of the label, and perhaps where Adam may not feel supported, accommodated or maybe, even respected. All of these things I have to write down and run through my head over and over again; and this needs good communication from everyone involved. In any event, it can feel like an isolating experience because I must deal with all of this mostly on my own – I take the responsibility and the worry on, perhaps as the stereotype goes, like mother’s do. But I realize that I have the the loving support of my parents and my partner, Adam’s aide worker, and the other team members in our lives that he really needs in order to live a good life. Parents and autistic people require lots of love, support, inclusion. This includes general acceptance of the way things are, as well as acceptance that some people, like my son,sometimes cannot participate in normate ways. Instead, he can always participate given our patience, accommodation, consideration and respect. As I think about how I felt about rabbit-holes today – of medicines and men, and to use Adam’s word, “catacombs” of our journey – I have talked myself out of feeling anxious and will continue plot along… just like Alice.

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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.