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Saturday, May 9, 2020

Autism Mother Myths and Truths

If I picture, without taking time to think much, a typical autism mother...well, do it yourself.  Just form a quick picture in your head of what you'd think of when you think "autism mother".

It's a strange exercise, because despite being an autism mother myself for a long time now, what I picture doesn't look much like me.  I picture a warrior.  I picture a mother who would do anything, anything at all, to help her child---a mother who fights for her child on every level every day.  This mother works day and night to get her child everything that might possible help them.  She also is completely devoted at home to her child.  She cooks special diets, she fills each day with enriching activities, she is completely accepting of her child while somehow also completely determined to give her child what is needed to live a life as close to "normal" as possible.

That's not me.  It's not anyone, really, or it's very few people.  I've been trying to figure out where the image comes from, and I think it's mostly from books.  Autism mothering books don't seem to be quite the vogue they were for a while, but when they were (I think the heyday was the 1990's), they seemed to follow a formula.  Child is diagnosed.  Mother briefly is overwhelmed and horrified, although of course she knew from the start something was wrong and had to fight to get doctors to see it.  Mother decides on a course of action to "cure" child, and follows that course without rest.  There are some tough days, but then there's a miracle breakthrough.  And at book's end, the child is either completely non-autistic, or they are still a little autistic but only because that autism helps them to have some amazing talent.  Not every book is like that, but a very lot were, and I'm a devoted reader.  Before ever having Janey, I knew just what an autism mother was like, and strangely, all those years later, I still kind of have that stereotyped picture.

What are autism mothers really like?  They are, at least to start, the same as any other mothers.  They aren't specially chosen. 

I can speak best for myself.  I'm no warrior.  I back away from any fight I can, or even any disagreement.  I'm not good at doing anything without rest.  If I knew a way to "cure" Janey, I'd probably be a slacker and not really do it very well.  OF course, there isn't a way to cure her, and that would not be my goal at this point even if there was.  I didn't fight for Janey to be diagnosed.  I didn't want her to be.  I am sure I was in quite a bit of denial, back then, but by the time she was diagnosed, it didn't take a lot of fighting to diagnose her---it was pretty obvious to almost anyone what was up.

However, I would have to say there ARE some traits of autism mothers.  They are traits that we develop, from living the autism mother life.  We don't have them to start, but we have them after some years of raising out kids.

What are they?  Well, protectiveness is one.  We might not be warriors, but we are ever vigilant.  We know how vulnerable our kids are, and we are constantly, every minute of our life, prepared to do what it takes to keep them safe.

Ability to live in the moment is another trait.  We can have a day which most parents not living our lives would consider about the toughest day of their life, and wake up the next morning, and if things are better, we can enjoy the new day.  We've learned things can change on a dime.  I'm willing to bet as a whole we are dealing with less anxiety than most with the whole COVID-19 bit.  We know how to live with uncertainly and stress, for sure.

I'd say most of us have a pretty good sense of humor.  We can laugh at ourselves, and laugh with our kids.  We see life's absurdities, see how what so many people take so earnestly isn't really as important as they think. 

That goes along with the next trait---an appreciation of what's really important in life.  We have come to know that it's not education.  It's not money.  It's not a perfect house, a fancy vacation, an active social life or a high IQ. Our kids teach us that.  The important things in life are the very little things and the very big things.  It's coffee in the morning and a song everyone sings along with.  It's a meal that we all enjoy, it's a movie we've seen a hundred times but still like.  It's running around in the driveway and getting a good night's sleep.  And it's love---loving our kids, loving them exactly as they are, loving them after a day full of screaming or a day full of manic laughter, love filled with pride, love sometimes mixed with tears, but love over all else.

I have to say---the mothers I have met that are living this autism mother life with me (and the fathers too, but in honor of Mother's Day, today is for the mothers) are amazing people.  We have a bond forged by shared experiences, and I would venture to say every one of us is a better person because of our loved ones with autism.  Happy Mother's Day, with much love, to the autism mothers out there.

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