Sometimes people ask me if I have any good resources to share. And I look at them blankly and they explain helpfully, “You know, resources about autism? Websites or books?”
So, in no particular order, the following are my top seven resources for autism.
(I know I said ten resources in the title, but I’m striving for brevity with this blog and between the Richard Sherman thing and the post about grandparents and pictures from my vacation, I’ve really been going on and on lately. So, seven it is.)
It took me a year to figure out how to do a double-under. You know, when you jump rope and you have to make the rope pass twice under your feet in a single jump? A whole year, this took me.
Lately I’ve been getting up at 6:00 am to exercise because my Crossfit gym doesn’t understand that I also have elements of autism and am extremely rigid about my schedule, and they went and canceled the 7:00 am class I’d been taking forever.
It stinks. It really does. It stinks to get up when it’s dark and cold out and it stinks to have to go to bed early worrying about the workout the next day.
But once I’m there, I don’t have to think about anything more than a rope passing under my feet five, ten, fifteen times in a row. All I have to do is listen to the steady tick tick tick of it hitting the floor and the deep exhales of my own breath and the blood rushing in my ears.
And suddenly it doesn’t stink anymore.
A Good Babysitter
Obviously, it wasn’t easy to find the right sitter who could handle five kids at a time, one of whom stims and has a verbal tic and obsesses about the color of the water in the toilet. But now we have several, and they love him and he loves them and the kids get excited and it’s really great.
Joe and I have gone out every Saturday night since my oldest son was six months old. I can count on one hand the number of times we’ve missed our night out, and it was usually because I was in the hospital having another baby. And when we had a newborn, that little addition just came right along with us.
It’s expensive, and sometimes I don’t feel like going. There are nights when I just want to crawl into a pair of pajamas and lie on the couch with a big bowl of ice cream.
But my truth is this: there are moments I worry we will not make it. I worry that we are one huge Oreo disagreement away from it all crumbling—disintegrating like the chocolate cookie itself into a cup of cold milk.
Date night revives us. We eat and we laugh and we talk about all sorts of funny things. We talk about fear. And I look in his brown eyes and I think about how he’s just as handsome and interesting as the day I met him.
And—bonus!—he always picks up the check.
Sometimes, I eat my feelings.
This habit started a year ago, when Jack was in third grade and homework really overwhelmed us both. Every couple of days I would bake a pan of brownies. You know, for the kids. And as the homework wars raged on throughout the course of the afternoon, I would begin picking the edges off until all that was left was a floating island of chocolate in the middle of the pan.
I figure I deserve it after all those dumb double-unders.
Personally, I hate the word gut. It’s ugly. But mine has never steered me wrong. I started following it when Jack was about six months old, because it kept nagging at me and saying really annoying things like wow he isn’t doing things on time something is wrong. It would not be silenced, even with aforementioned brownies.
The gut thing is two-fold. Yes, I follow my gut, but I also discovered I have guts. One of the hardest things I ever did was at the local YMCA, when Jack screamed out those boys are really, really black as two college kids walked past us. I made myself catch up to them and call them back, shakily I made introductions and explained the intention behind Jack’s seemingly cruel comment.
This might sound weird, but after that experience I knew I had the courage to raise an unusual son in a usual world. I knew I had guts.
Now, I don’t mean pictures of my family hanging on the walls. I mean, who needs those? With the invention of the IPhone and digital photography, these kids have been taking selfies and posting them all over my screens for a year now.
No, I’m talking about a book here: Family Pictures by Sue Miller.
Right now you’re probably thinking A-ha! A Book! Finally, something I can sink my teeth into on this silly list of “resources”.
Except its fiction. It’s about a family with six kids, and the second son, Randall, has a severe form of autism. I first read it when I was in college and I’ve probably re-read it every year or so since.
It isn’t even so much about Randall, as much as how the entire family breaks down around him, in many ways because of him—because of the tremendous stress a kiddo with autism can place on a family. The parents disconnect. They divorce. The kids resent Randall. It’s kind of a mess and there really isn’t a happy ending. In some ways, it is my cautionary tale.
Great book though.
I have an entire laptop and several notebooks and scraps of paper next to my bed full of crap I’ve written. Most of it is just terrible. (Yes, even worse than this post.) But I keep doing it anyway.
Some people ask me where I find the time to write. And the truth is, I don’t know. That is, I didn’t know until I read Mary Beth Danielson’s article, Seventeen Minutes of Kayaking, a few months ago.
In her essay, Danielson talks about our need to honor our inconvenient passions; to pursue what lights us up from the inside out, and to chase what is rightfully ours.
She suggests that spending a few hours writing every week actually made the rest of her life with toddlers and babies and commitments work. Reading this, it dawned on me: writing helps me somehow fit the puzzle piece of Jack and autism and my family together.
Because to write about my son, first I have to really see him. And once I really see him, I want to write about him. I want to tell you about him.
The Other Small People Who Live With Me
Whenever I am thoroughly confused by something Jack is saying or screaming or doing, I automatically look to Joey, Charlie, Rose, or Henry to help me out.
They are savvy, let me tell you. They are like little Autism Whisperers. Over and over they draw him out and pull him close.
Like the time we were all eating steamed clams with lots of butter and I really wanted Jack to try one. After a few minutes Joey advised, “Mom, you need to let him touch one first. He has to feel it before he will eat it.”
Sure enough, once Jack cradled the clam shell in his palm and slid his finger around the edge, he popped a forkful into his mouth. “Huh. Slippery.”
(Ten-year old Joey just read that part and suggested he’s really a “medium” person. So, The Other Small and Medium People Who Live With Me.)
I am totally running over on word count here so I have to keep this part short. This is all I’ll say about Joe:
Yes, some days I worry we won’t make it, we won’t last. But I know I could not breathe without him, and maybe that’s enough.
He is my other perspective, my open window when the door is closed.
But he snores.
Before Jack, I never knew anyone who had autism. In fact, the only exposure I’d ever had with spectrum disorder came from the movie Rainman.
But now I live with someone who has autism. And every single day I learn from him.
When he was about three, it occurred to me that instead of plopping him in front of those Baby Einstein videos so I could scour the Internet to learn more about things like joint attention and pervasive developmental disorder, I would be better off watching and listening and hearing my own son.
Because, yes, Wikipedia told me that joint attention means shared focus of two individuals on an object and is achieved when one individual alerts another to an object by means of eye-gazing, pointing or other verbal or non-verbal indications.
But all I really needed to know was that when my neighbor walked his adorable little dog, Boots, past our window, and I pointed and said look Jack there’s Boots do you see him, Jack did not turn so much as a hair on his head to see what I was trying to show him.
Wikipedia didn’t tell me that one day, Jack would look. He would follow my pointed finger to the bright blue sky and repeat pwane sky pwane sky as a giant airplane flew over our heads. And that I would feel simply weightless with joy; like I could have floated right up to the sky myself and bounced on a fluffy white cloud.
Wikipedia doesn’t do that. Only Jack can.
I know, I know. Some list. Not even one website or support group or research article. (Give me some credit though, I did recommend a book. Plus I said seven but I actually did nine.)
But here’s the thing. If parenting and autism has taught me anything, it’s that I need to be whole so I can appreciate Jack’s wholeness—his rare smile and his quick hugs and the way he organizes the K-cups into neat rows for my morning coffee.
I need to read and write and laugh and live out loud. I need to be brave, and I need to eat the brownie if I feel like eating the brownie.
Most of all, I need to chase what is rightfully mine, and some days that’s nothing more than closing my eyes, taking a deep breath, and jumping the rope.