Susan's Blog

Thursday, March 15, 2012

The particular, peculiar joy of autism parenting

When Nat was 10, during a terrible time in his life, some good things happened, too. We met S and his family, and we started going to Special Olympics gymnastics. S was one of the boys on the team. “Team” is used very loosely here, by the way; these boys were all autistic and all bouncing off the walls. But Jocelyn, the coach, whipped them into shape — with the parents’ help.

By the time they’re 10, kids with profound autism — like Nat and S — have really conditioned their moms. S’s mom (L) brought visual aids to that coach. I sat the coach down and told her to keep it simple and repetitive. “Don’t teach them new stuff each time,” I said. Other moms and dads lent their expertise. And that is how the coach got these boys to the point where they won gold medals that summer, which in some ways had also been the blackest time of my life.

Parents of autistic kids are often a special breed. I’m not saying we’re better or anything. I just know that we have learned how to man up and do what we have to do. Sure, we want to get to the bottom of why our kid is smearing feces; but we are also the ones who have to clean it up. When you have children, you are humbled immediately by the fact that you are sometimes literally up to your wrists in shit.

So many autism moms I know started out like me, blinking in confusion and grief at first, that life had not gone according to the Plan. Then we  slowly climbed out of the pit and started dealing with it. Learning about these unusual children of ours. Loving them with a ferocity born out of a fear for them. A protective love that knows no bounds. These moms first became thick-skinned from dealing with the school system or insensitive or clueless doctors, from being stared at in the checkout line, from being told it is their fault. But then something breathtaking happens. These parents start to move beyond thick skin and competence: they become what they were once looking for.

I gave a talk tonight at an organization that was co-founded by S’s mom. That’s what autism moms do: they find more energy, always, out of nowhere. We aren’t only PTO chairs; we start non-profits. We sue major city school systems — and win. We deal with shit others never dream of: the shit of not understanding the child we love.  And I truly believe that out of that crucible we are forged into the strongest people on the planet.

There were tons of people in that library room tonight, and their kids were next door with a therapist who was teaching them community skills. Not just childcare: skill-building. That is how my friend is. No wasted moments! Everyone, every child felt welcome and understood. What would I have given to have had that kind of group when Nat was three! And now, there was my friend leading the group, introducing me and my books, and parents all around the room nodding their heads about what I was saying. That connection never grows stale for me.

And of course, the biggest connection of all:  our sons. When S saw me tonight, he started singing the Zorro song. His mom pointed out to me that’s because seeing me reminded S of Nat, who is always Zorro for Halloween. My heart flipped over when I realized that S had noticed me.

S and Nat are also in the same day program now. What must that be like, his mom L and I wonder, laughing. That kind of laughing is so familiar, the glee shared by two autism parents. Laughing with yashtikas, it’s called in Yiddish, literally “laughing with pins.” It’s the laughter of surviving and loving all the more for it.

I learned tonight from her that the two guys actually share a job coach at the CVS where they work. That they have a kind of competition, where they eye each other putting the soda bottles into the coolers. What is going on with those two?  Is it a bro kind of thing? L and I laugh and laugh because we are beyond thrilled about where our sons have gotten to. Sure, we had a hand in it, as did their dads, their teachers, therapists, etc. But our sons have gotten to this point where they are no longer simply “appropriate peers” for each other. These guys are coworkers. They know each other’s families. They really know each other. They get on each other’s nerves.

They’re friends.



You said, “These parents start to move beyond thick skin and competence: they become what they were once looking for.”

In life we all have to become what we’re looking for.

And thank you for the beautiful image of these two young men being coworkers, having a “bro” king of relationship. That makes me smile and hope.

— added by Dixie on Friday, March 16, 2012 at 7:54 am

I remember wondering if we’d ever have a conversation with Jared, and now we’re so much beyond that, with dramatic backslides every now and then. He’s charming, he’s funny, he likes to make clay sculptures for his friends. Our family likes the phrase “progress, not perfection”, it’s helped in dark times, and kept us humble in great times. Jared reaching out to others in ways we never thought he would, it’s enough to may your heart burst. Lisa

— added by Lisa on Friday, March 16, 2012 at 6:02 pm

I find the idea of “getting to the bottom” of why kids smear feces very funny indeed.

— added by Jill on Saturday, March 17, 2012 at 2:34 pm

Amazing post – thank you. Very inspirational and I related to it 100 percent!

— added by Stephanie on Saturday, March 17, 2012 at 4:52 pm

It’s great how they are really connected at this point. Parenting can be hard no matter what your situation, but I think that all parents do the best they can and look for advice wherever they can get it. I’ve discovered a great mom blog nyc in Young Urban Moms. I really love their stories and they have great tips and advice. The moms are really easy to relate to as well. You should check it out.

— added by Norma Fay on Monday, March 19, 2012 at 2:19 am

I’m a mom of three, two with autism. One is 8 and has severe autism; the other is 4 and high functioning. Love this post and can relate to it all!

— added by Tamie on Saturday, March 24, 2012 at 3:20 am