The Wisdom of Time
Filed Under (Uncategorized) by Estee on 05-05-2009
I’m in a Starbucks because my Internet is down at home. As I check in on my email, I listen to three newbie autism moms refer to their books and talk about anxiety and autism, schools and trying to make sense of it all. They are abuzz on caffeine and worry, their voices popping in and out of each other to get a word in edgewise on a new book they are reading.
They are talking about methods, what’s better, what’s not. For some of us older autism parents, this is old territory. I am listening to the mother I once was and ponder the one I am becoming as Adam grows, as I go through separation and divorce. The very fabric of our lives are changing in profound ways — in ways I am right now, too close to objectively comment on. Yet listening to new moms allows me to to consider how time changes us.
There would be nothing I could say or do to change the learning process they must go through. They are engaged and intent. They are Jenny McCarthy’s “warrior moms.” There is likely nothing that will stop them from trying to do what they can for their children. For some, it will be the anything and everything approach. It may be reading every book they can get their hands on. It may later or sooner be meeting autistic people, reading research, attending conferences….I can make a long list of to do’s that was a part of my journey. I have kept every list, every day diary, every journal I have, and every communication book on Adam since day one.
As soon as Adam was diagnosed, I began reading. He was so ill, I remember. We had our suspicions, Henry and I, and I booked several diagnostic appointments just prior to our Xmas holidays in 2003. Adam was 18 months old. We had traveled to Nassau and Florida and Max and Adam became very ill with a horrible flu. I also became very ill. I nursed and tried to help Adam as I also lay for days in my in-law’s more comfortable bedroom in Florida. I don’t think we got up for nearly a week. Adam ended up in emergency on intravenous. It was a nerve-wracking time. Still, this period began my intensive reading about autism. I started by finding books at our local bookstore and it went from there. I was hyper-vigilant and anxious. Life as we new it (or expected it) had suddenly changed, although Adam had not changed at all.
I’ll agree that early autism moms can become “warrior moms,” protective of our children and determined to get them “help.” I’ve learned to calm down. I’ve learned to respect Adam’s way of learning. I’ve learned that what I did and read and all the hard work was something that I would never and could never change. Yes, I’m on a much different path than Jenny and I’m one of her critics. Yet when she wrote “warrior mom,” there was something universal in that that I know every mom can relate to.
The more I’ve learned to accept life as it is, the more easily I can swim in it. When I hear a report on CNN about autism and amygdalas and brain size, the more I know this will be tempered by further science. Gary Taubes, as I quoted in my essay The Mismeasure of Autism noted that when it comes to science, it is the first claim that is likely to be wrong. While CNN is reporting a “finding” based on a theory, it is still not exclusive fact without further testing under different perspectives.
I would like to discuss the anxious parent — the neurotypicial parent (or a parent under the delusion that they are typical for everything is relative). We are the of earlier generations who had not gone to school with and played with disabled kids. They were rarely seen in our neighbourhoods. They were the kids who were sent away. Yet, because of parents like Adam’s mom and many millions of others, who will not accept exclusion, this is beginning to change.
What lens do we look at autism through and how might this change in the future as Adam’s generation is exposed and plays alongside other disabled children? This is the social science test that I am interested in. Let science undergo the test of time.
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.
Oh how I remember those early days…the anxiety and stress of not knowing. I look at my boys now-mainstreamed. I wonder if they are the true pioneers for change-that by just being there, in that enviornment..is it a step towards understanding and acceptance? I have to say-I was never a warrior mom-more like a WORRIER mom..(sigh) still am.
I could not agree with you more when my husband asked why would I put my Chase in a regular school with inclusion I simply knew in my heart that “hey the whole world is not abled, disabled, black, white, rich, middleclass, poor” why should I waste precious time having Chase grow and develop as if it were all or nothing my Chase needs to see the differences and others need to see the differences in him so that each can respect each other. I dont agree with Jenny M either however I read what she has to say, you have to know why you dont agree and figure out your path ” the best defense is a good offense.”
Autism really is a steep learning curve and there’s so much to take in that those women must have felt completely bombarded with information – poor things!
Dr. Wong,
I wouldn’t venture to call women “poor things,” but indeed, we spend an inordinate part of our lives sifting through information and THAT is a full time occupation, believe me. I am not happy that there is so much information that also a lot of it is unhelpful information, or information that can endanger the autistic person (chelation therapies, medical “treatments” that remain unfounded).
As for motherhood and women, I’ve got much to say on that. Women have never been treated equally for their work in the home. Now multiply that with a child with special needs and the work a parent must do to accommodate that child and work to break down barriers to inclusion in all programs…THAT is work. But it’s definitely worthwhile work.