I really enjoyed meeting you this week. We had quite a bit of time together to talk when you drove me to the airport, since there was a lot traffic. I didn’t realize there was so much construction in Austin.
I liked hearing the stories of your childhood in Sudan, and how great herds of elephants crossed the land, and the way you and your brothers and your sisters had to dart across their path.
I especially liked the part where you told me about a big swimming hole in your village, and how you and your two brothers stood one day and watched while a baby elephant tried to swim out of the water, but kept sliding back in the slippery mud.
And the mother elephant, well, she just waited on the side, and watched her baby slide and swim and slide and swim. After about an hour, she reached in, and gently brought him to shore.
As we waited, bumper-to-bumper with cars ahead of us and cars behind us, I told you a little bit about me.
I told you I have five kids—four boys and one girl. My daughter’s name is Rose, like the flower.
I told you my son Jack has autism.
I told you how, where I live, it is autumn now, and the way the leaves on the trees are changing colors. In the late afternoon, the sun glows red and orange and yellow, and it’s glorious.
We laughed about politics and talked about the Texas weather and when there was a lull in the conversation, you looked at me in the rearview mirror and asked me a question.
Your boy. He will always have this autism?
Oh, yes. He will always have it.
Some people might get mad at a question like that, but I want you to know I didn’t. It was so innocent and pure and hopeful, it made me smile. In fact, I wanted to reach into your reservoir of hope, and take some for myself.
Sometimes I wish I could be innocent when it comes to autism, but I’m not.
I know all about the statistics and the gluten-free and the therapies.
I know how life can change in an instant, from a river of calm one moment, to a riptide of chaos the next.
I know many couples raising a child with autism get divorced, and I know many brothers and sisters of a child with autism become angry, and jealous, and defensive.
I’m not divorced yet. Oh sure, there have been days when it feels like my husband Joe and I are hanging on by a thread, but so far, we’ve always managed to find one another again.
My other kids aren’t too jealous. Oh, sure, 14-year old Joey sometimes wonders why he has do so much homework and has to go for extra help in math when Jack goes out to the movies and for lunch at his school.
I try to explain that Jack’s school is a combination of academics and life skills, and when Jack goes to the movies and for lunch, they are trying to teach him how to make change from a dollar and order from a menu.
Life skills. Man, I hate that phrase. I can’t exactly put my finger on why, because we all need life skills, and it’s good for kids to learn how to sew buttons on a shirt and ask the server in a restaurant for a refill of their water, but for some reason when I say the words out loud—my son goes to school to learn life skills—it makes him sound like a big dummy.
He’s no dummy, I promise you that. A child who can figure out every password on the computer and order $200 worth of DVD’s from Amazon is most definitely not dumb. He’s, well, he’s complicated.
You just have to pray. He will find his words.
If we’d had more time together, I would have told you I do pray. Boy, do I pray.
I don’t pray that he stops having autism—I mean, for a while I guess I did, when he was maybe three years old and I thought he would outgrow it. But now I know better.
Now, I just pray he’ll make some friends soon, or his body will adjust to the new combination of medication we’re trying. You know, things like that.
I wish we had more time together, so I could explain to you why Jack will always have autism. It isn’t something that heals itself with a little help, like a broken bone in a cast, or a cold that gets better with antibiotics.
My son doesn’t have the kind of autism you see on TV, like in that new show called The Good Doctor where a young man stands around with a quiet smile on his face and his eyes are all dreamy and he performs surgery on a liver by the side of the road.
Our autism is angry, and lonely, and it wears a frown. For now, anyway.
With our autism, I have to fill out a bajillion forms all the time. This week I had to go online and order Jack’s school picture. They wanted me to select which grade he’s in, which is very hard because technically he’s in 8th grade, but he’s in a special school. Also, he’s very, very young for his age.
I don’t think medical school is in our future, if you know what I’m saying. I mean, I guess anything is possible.
This is our autism. It is uncertain—unpredictable. It is knowing something in your heart but being too scared to say it out loud.
See, I have to tack on the phrase I guess anything is possible to almost everything I say about my son, or people will think I’m trying to sell him short, or minimize his potential, or ruin his dreams.
I’m not sure he’ll ever drive a car, but anything is possible!
I don’t think he’ll ever have a child, but anything is possible!
He may not graduate from high school, but anything is possible!
I always finish off the sentence with a stupid sing-song voice, like I’m trying to sprinkle glitter on top of rancid meat.
Listen, I know he’s a bright, interesting kid with a future no one can predict right now. But at the very same time, I know the reality of the child who lives with me, and I know that holding on to dreams too tightly is not always a good idea.
I looked over my shoulder, and you drove away. You gave me a small wave. I waved back at you.
I wanted to say thank you for asking. Thank you for listening. Mostly, thank you for telling me about the elephants.
The mama and her baby remind me of autism for some reason. Something about the swimming and the sliding.
Ohh Mama, I feel for you! Your words are so beautifully written. My toddler son is not like other kids, and it is so hard to think about whether he will ever do “normal” things that everyone else’s kids are doing. I completely know what you mean about not wanting to sell him short, but it’s also in our nature to be realistic and practical! The unknown is so scary! I’m trying to gracefully make my way through this situation that I never thought I’d be in. We should take it easy on ourselves I guess 🙂 You’re a great mom!!