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.

Not Defined by Autism

There's a saying about autism that is very true---"If you've met one person with autism, you've met one person with autism"  I've been thinking lately how the word "autism" can mean very little, even when modified by the sometimes politically incorrect low or high functioning labels.  This fact was brought home to me strongly when I tried taking Janey to a vacation event run by the local autism agency.  It was an animal show---or I think it was, as we couldn't actually stay for it.  After a half hour free play time, which Janey tolerated because Tony came with me and stayed with her every second, all the kids were supposed to sit on the floor near the man showing the animals.  I was amazed that most of them did.  Janey, however, did not want to be there any longer, and showed that vividly by kicking me in the face.  I got the message and we left.  I felt extremely low for that ride home.  If Janey couldn't fit in in a crowd of kids with autism, where in heck would she EVER fit in?

After lots of thinking, I realized that was a harsh conclusion for me to come to.  Janey has a unique personality.  ALL kids have unique personalities.  But in picking "autism" as the word to describe Janey, only a little part of who she is gets highlighted.  She IS autistic---she's been evaluated at least three times and meets the criteria for that diagnoses.  But she's more....

Janey is VERY easily bored.  That fact came alive this vacation week.  Neither of her brothers were around, and Tony worked half days.  Although I did my damnest to keep her entertained, Janey hated this week.  Janey likes activity, movement, noise, excitement.  She doesn't need a lot of down time.

Janey has next to no patience.  If she asks to do something, and I don't do it immediately, she freaks out.  If she wants to snuggle, she wants to snuggle RIGHT NOW.  If she craves a walk to the ice cream store, it has to happen IMMEDIATELY.

Janey has a hair trigger.  This relates to the first two.  If Janey is bored, and if she wants to do something to relieve that boredom, and I don't do it immediately, she lashes out.  I was hit over and over and over during this vacation week, almost always because I wasn't doing what Janey wanted to do.

Those are three mostly negative facts of Janey's personality.  Here's some positive ones...

Janey enjoys being out and about.  She doesn't have a real craving for routine.  This is where the standard view of autism doesn't much serve Janey.  Her happiest day this vacation was when Tony and I took her for a long drive to parts of the state we hadn't seen before.  Just seeing the scenery, stopping here and there for a bite to eat or a run at a scenic turnout, resulted in a super day.  She did get mad at one point when she wanted her shoes off and that didn't happen immediately, but overall, the day was a dream compared to the other vacation days.

Janey is passionate and enthusiastic about things she likes.  If you have a view of kids with autism being self-contained, you aren't picturing Janey.  When music comes on that she likes, her excitement and joy are completely infectious.  She goes into a state of total happiness.  Last night, she discovered "The Pink Panther" on YouTube, and her hysteria over the antics she was seeing was something else again.  She can get excited beyond belief at pesto, at Chinese food, at TV shows, at seeing someone she loves.  She loves things hard.

Janey has a wonderful sense of humor.  She likes nothing better than the whole family being together laughing at something.  One way to get her out of a bad mood is to put on a funny show or movie we all like and laugh loudly at it.  She says things that I think are designed to crack people up, and she loves it when people laugh.  The other day, at the ice cream store, she got chocolate milk instead of her usual ice cream.  The clerk commented on that, and Janey said "I totally need a drink!"  The whole place fell apart laughing.  I swear Janey knew what she was doing.

I imagine that every parent of a child with autism could write something like I have just written---aspects of their child that define them, outside of the ones that autism dictates.  It's why what works for one child with autism might very much not work for another one.  It's why I have a hard time sometimes with advice that is general, advice about "what works for kids with autism" Janey's particular blend of attributes makes her who she is, not her autism.  She's a challenging kid----there's no question about that.  But I don't think it's her autism that makes her challenging, any more than it's her autism that makes her such a firecracker.  She's Janey.

Three Surprises in Ten Minutes

Janey has been tough lately.  She's been wearing us out, trying out patience, discouraging us a good deal.  Last night was no exception.  She was cranky, volatile, angry, and we were tired out of our minds.  And then, within a very short period of time, she surprised us with her unique and her quirky language three times, and left us laughing instead of crying.

The first incident stemmed from her love/hate relationship with "Little Bear".  Little Bear is one of the mildest TV shows you could ever watch, a sweet story of the adventures of a human-like bear, his family and various other animal friends.  We really don't get why Janey is so worked up by it.  She asks to watch it constantly.  When we put it on, she will watch about 5 minutes of it and then blow up, always.  She freaks out spectacularly and gently or not turns off the TV.  Last night followed that pattern.  She asked for it, we said as we always do "But that show makes you very upset!  Do you PROMISE not to hit the TV or scream if we put it on?"  Yes, we are suckers.  We know her promises are not sincere, but we give her another chance, over and over.  We put it on, and the same thing happened that always happens.  She screamed after a few minutes and slammed her hand into the TV to shut it off.  Tony told her to go to bed (it was close to bedtime) and said "I am not proud of you!"

That's when she surprised us.  She said back, in a voice familiar to parents of preteens everywhere "I am not proud of you either!"  We looked at each other astonished, and couldn't help starting to laugh.  It was so unexpected, but at the same time, so typical of a child her age.  I'd never heard her use the world "either" before, and she rarely responds to anything in that kind of sentence.  We were frankly delighted.

However, she was still supposed to stay in her bed.  We lay down with her, trying to get her to sleep. She faked being ready to sleep for a few minutes, and then surprised us the second time.  Using a sing-songy silly voice, she said "I have to go potty.  I want to make a stinky.  I need to make a poopy.  I want to have a....(imagine her going on and on for about 10 different words that are euphemisms for needing to use the bathroom)"  We had no idea she even knew some of those terms.  And we were fairly sure she didn't actually have to use the bathroom in that way, as she already had just a bit earlier, but she knows the one thing that will always allow her to get out of bed.  So I took her in, and of course, it was a ruse, but still...we again were shaking our heads and chuckling.

When she was back in bed, surprise number three came along.  She said, in a slow and careful voice "acetaminophen".  We had given her generic Tylenol over the weekend when she was banging her head and it appeared she had a headache, and she had learned the name somehow from our talking to each other.  We asked her if she wanted acetaminophen, and she said yes.  We were, again, shocked.  It's not an easy word, and not one she's heard a lot.

All three of these happenings illustrate what is so fascinating and at the same time frustrating about Janey.  She doesn't learn in traditional ways.  You can plug away at trying to teach her the most basic things for literally years, and she shows no sign of having learned them.  Or she learns them and then seems to forget them, like with writing her name.  But inside her head, there is so much going on, and when the time is just right, it comes out, giving us a tantalizing glimpse of a Janey we wish we could see more often.

A Facebook page

I joined a Facebook page (I guess I "liked" a Facebook page, so I get the posts from it, technically) today, http://www.facebook.com/AutismWithASideOfFries So far, I really like it, as it seems to concentrate on the lighter side of autism---lots of those little old-fashioned looking postcards Facebook does, or other memes (I learned that word from my boys!) about autism. It's great to be able to laugh at my life a little. It's something I think a lot of professionals working with autistic kids don't get (although those at Janey's school are mostly an exception---thanks for the times we laughed until almost crying, you guys!) I've read books that were so deadly serious that I finished them crying. Of course, autism is a serious thing. It's very, very serious, but at times, our kids and our lives in general can be very funny---sometimes black humor and sometimes just plain old funny. And it's not wrong to feel that way, I don't think. I loved something I saw on the new page, along the lines of God creating autism to offset the amount of boring people on earth. Janey is rarely boring. She's lots of things, but she's almost never boring. And the fellow mothers of kids with autism or other related issues I've met through this blog are some of the funniest folks I've ever met (yes, I'm talking about you guys, Michelle, Sara and the rest!) And so it's great to be able to, in the midst of the tantrums and the spills and the crying and the sometimes despair, laugh my head off from time to time.