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.

Happy Mother's Day---Autism Style!

I woke this morning feeling good, feeling hopeful after our good clinic visit, feeling like it was going to be a good Mother's Day.  I spent some time in bed reading, and then called my own mother.  We had a good brief chat, brief because Tony called me after a few minutes to get off the phone and help him with a "pull-up incident", the lovely kind that involves washing all the bedding and giving Janey an immediate shower.  We dealt with that, and then I decided to do dishes.  They had built up in the sink.  To make doing the dishes a treat, I put on my guilty pleasure Pandora station, my Barry Manilow station, which I have modified by using the thumbs up and thumbs down feature over the years until it plays only songs I love when I am in the mood for guilty pleasure songs.  I rocked out a bit to "Sometimes When We Touch", "Don't Give Up On Us Baby" and "I Wanna Make It With You", and then Tony and I had a cup of coffee, at least until Janey came in the room and we realized we must have missed something in our survey of the bed area, because she was again covered with...you get the picture.  So I gave her another shower, got her dressed again, and sat down with my now fairly cold coffee to write this.

And this morning so far, looking back on it, is a good slice of the Autism Mother life.  We get our fun where we can.  We enjoy the little moments, because we don't have the time or energy for big moments.  We take the days as they come, for the most part.

We are the mothers that will probably never get spontaneous cards or presents from our girls with autism.  We will get sweet cards the school makes up, or our husbands make up, but our girls are unlikely to go out and ever get us a present.  They might say "Happy Mother's Day!", if they are verbal and if they are prompted, but that's about it.  In many ways, being a mother to a child with autism is literally a thankless job.

However, we have our little moments.  We have the times our girls do something we never thought they would.  We have the moments when we look at them and think "What a beauty she is becoming"  We have the moments when we realize they are never going to scream at us that we are the worst mothers on earth, or demand to wear the latest styles, or run off to join a motorcycle gang.  They are going to be our girls for life, most likely, and while there are days (many days) that is incredibly hard, even tragic, there are other days, or maybe moments, when we can take comfort in that.

We aren't chosen.  We aren't saints.  We aren't heroes.  We are picked by chance.  We are members of an exclusive club, one most people would not join given the choice.  However, my years in this club have led me to feel we are, for whatever reason, a pretty cool crew of woman.  So here's to Michelle, to Sara, to Jamie, to Melanie, to Abby, to Rebecca, to Autumn, to Janelle, to Ewa, to Becky, to Claire, to Audrey, to Laura, to each and every one of you, every mother who is part of this club.  The happiest of Happy Mother's Day!  Grab a cup of coffee and let's have a toast to us!

The Mother's Day Card They Don't Make

If you stroll the aisles of your local card shop in search of a Mother's Day card, you will find almost anything you need.  My husband actually gave me a card this year from our cats.  Like that card, many of the cards are made to speak for kids that don't talk, or who aren't likely to pick out a card---which, truth be told, are most kids under the age of 20 or so.  Kids aren't extra known for planning ahead to make Mother's Day special.  That's more the work of husbands or teachers, and I appreciate all the work both those categories do to make sure I get some Mother's Day wishes.  However, the card that I've never found is one to give to the mother in your life that has a child with autism---a very specific card from our specifically special kids.  Here's some of what it would say, if it existed....

"Thank you for all the nights you stayed awake when everything in you wanted to sleep.  I don't know why I sometimes wake in the night, but you are there for me when I do."

"Thank you for changing diapers and pull-ups, and occasionally cleaning up from what happens when they aren't changed quickly enough.  Thank you for understanding that I'll be trained when I'm developmentally ready, not when my age says I should be"

"Thank you for finding your inner tiger to speak up for me when I can't.  Thank you for overcoming your fears and being an advocate for me"

"Thank you for focusing in on me when I am melting down in public, and ignoring the stares around me.  Thank you for finding the strength to keep taking me out"

"Thank you for having the courage to follow your instinct as to what will help me best, and thank you for having the flexibility to change course when what you thought would work isn't"

"Thank you for taking joy in my accomplishments.  Thank you for realizing that a triumph is a triumph, no matter what age it occurs at"

"Thank you for finding a way to communicate with me, however you can.  Thank you for knowing that talking in a conventional way isn't the only right kind of communication"

"Thank you for enduring my tantrums, my meltdowns, my crying, my manic laughter, my rituals.  Thank you for understanding I am doing the best I can"

"Thank you for seeing all the ways I am amazing.  Thank you for secretly thinking, as almost every mother thinks of almost every child, that I am one of of a kind, special in a way that no other child is"

"Thank you, most of all, for loving me---loving me with a love that is fierce and all-consuming and never-ending.  Thank you for being my mother"

And my own voice here---thank you to all the mothers of autistic children everywhere.  You are my sisters.  You are my heroes.  You are my strength.  You are amazing.  Thank you.

Mother's Day, autism parenting style

For some reason, I was dreading Mother's Day this year.  Maybe it's because it seems in its core to me a Hallmark holiday, a day to feel certain acceptable feelings and to celebrate in a fake way, to reward certain kinds of perfect mothers for their correct form of mothering.  I didn't sleep well last night, thinking about a multitude of things including that.

Then, this morning, for a little bit, I had a classic Mother's Day happy interlude.  For one of the first times, the boys had (with just a little Tony help) gotten me some very heartfelt presents---some Whole Foods pastries treats, some fantastic local caramels (worth a look at, here's the link!), a homemade fantastic card with even a authentic J from Janey, and most exciting, in an ironic and hysterical way, a Brooklyn Lantern!  I've gotten in tears of laughter every time I saw the informercial for it (another thing worth a look if you want!), especially the look of extreme delight the actress shows, and how she tried to eat spaghetti with a conventional flashlight under her chin.  I never expected to own my very own Brooklyn Lantern, good for 100,000 hours!  So we were all laughing and having a wonderful time.  You can almost guess what came next...

Yes, with the 4 of us all happy and having fun, Janey slipped into the kitchen, right next to where we are in our very small house, not even separated by a door.  All morning, she had been asking for Indian Chicken, which is chicken sauteed in a tomato sauce Tony buys in a jar.  I guess she got tired of waiting, and in our literally two minutes of not strictly having our eyes totally on her, she somehow opened the jar, which is not at all easy to open, and poured the sauce completely all over the kitchen.  On all kinds of things---cookbooks, Tony's shoes, clothes---just everyplace.  And there we had it---the Mother's Day spell broken. A huge cleanup, an exchange of talk about who should have been watching her, all that fun.  During that, she ran to our bed and got tomato sauce also all over all the bedding.

And that is Mother's Day, autism style.  Autism never, ever, ever, ever takes a break.  You can't let your guard down, not for 10 seconds.  You can't relax and just enjoy, assuming all is fine.  Every single moment has to involve autism.  Every damn minute.

I don't mean to be so negative.  It was still a great time, with the lantern laughter, with my great treats, with my card, with my fantastic kids and husband.  But I am tireder than ever.  It's never going to end.  I'm an autism mother.  I will always be an autism mother.  That is my life.  It's a crazy life.  It has great moments.  It has its rewards.  And I know that's the case for any kind of mothering.  Mothering isn't easy.  No-one said it was.  I have my own specific set of challenges, but I also have my own specific set of rewards.  But just for that two minutes, couldn't Janey not have spilled that sauce?

Happy Mother's Day

I want to send out Mother's Day wishes to anyone reading this, whether you are a mother of your own children or not. If you care about children, you deserve a day.

It's been a very nice Mother's Day. Tony and I often joke about how bad some of my past MDs have been! It seems like everything always went wrong, or everyone was in an extra bad mood, or someone was sick. Today, everyone was happy and healthy. William surprised the heck out of me with special cupcakes he bought on his own from Rosie's Bakery, with the most delicious frosting I have ever tasted. Freddy made me a card with an assortment of photos and sweet words. Janey was cheery and said "Happy Mother's Day!" with a little prompting. Tony made me some French Onion Soup and gave me a big break. I spent most of the day reading sci-fi short stories.

I've been feeling a little more positive about mothering and autism lately, which you probably can guess is directly related to Janey's extended good mood. Yesterday, we went to some lawn sales with her, and had a sit-down lunch at Burger King--as fancy as we usually try with her. Just Tony, Janey and me, and it felt nice. We enjoyed seeing her enjoy the food, we put the little crown on her, we all ate well and laughed and enjoyed ourselves. In the middle of the meal, I was struck by something---that this was a preview of the rest of our life. The boys will move on and out, and although they will always hopefully be a huge part of my life, they will have their own life. And the unit left will be the three of us. On most days, that scares me, but yesterday, for a moment, it felt good to think about. I could see it working.

I will be a mother forever, like every mother, but unlike most mothers, I will probably be a hands-on, child at home mother forever. It's overwhelming, but for today, for a present to myself, I am going to think of the bright side of it. I always wanted to be a mother, and I always will be one.