Who would I be without him?
Last Wednesday, Joe and I took the kids to this pool club in our town.
It’s a casual place with a playground and gas grills and tennis and volleyball. All day long kids run in packs which dissolve and regroup as families come and go. They beg to try each other’s snacks and toss baseballs to each other on the dusty field and play a funny game called Dibble at the edge of the pool.
Jack doesn’t care about the groups of kids or their snacks or their games. He has never once played Dibble. What Jack wants is the diving board.
The entire time we’re there, he jumps off of it, swims to the side, climbs the ladder, and jumps again. He averages about four thousand million and twenty-two hundred jumps per visit, and if you think four thousand million and twenty-two hundred isn’t a real number, well, you’ve never met my son with autism.
(The other thing he likes to do is swing on the swings two thousand hundred times and then complain he doesn’t feel so well.)
The thing is, it’s painful to watch him on the diving board because he takes forever to actually jump. He walks to the edge and stands there, stimming and twitching and pacing while all the other kids pile up behind him.
“Jack! Jump! Now!”
“STOP. For TELLING ME. You made me. LOSE FOCUS.”
And then the whole process begins again—the pacing and the stimming and the twitching. He usually runs his hands over the length of his body once or twice before he finally—finally—takes the plunge and jumps into the water. Then he screams in a high-pitch voice that it is so cold he’s going to die, and he climbs out and gets right back in line.
On Wednesday I turned to my husband Joe and said, “I think I should go tell the lifeguard, you know, who Jack is.”
“Honey, I think he knows who Jack is by now.”
“How? It’s the first day of summer and we’ve only been here ten minutes.”
Then I followed Joe’s gaze to the diving board, where my son stood, rubbing and twitching.
“Yeah, I guess you’re right.”
When Jack was about two, I used to play this little game in my head where I asked myself what my life would be like if he wasn’t diagnosed with the spectrum disorder and he didn’t scream every time I turned on the vacuum and try to run out the door every time I left it unlocked.
I used to contemplate all the ways in which my life would be easier if my son were more, well, normal.
I could go to the grocery store without a stomach ache.
I could stop worrying about the way he only spoke ten words and the way he wouldn’t eat anything wet like yogurt and the way he balanced on his tippy-toes when he walked.
I could stop talking to specialists and trying to describe the way my little boy never pointed, never babbled, never did anything a two-year old should probably do.
I could breathe.
I could relax.
I could be happy.
I am not incredibly proud about this way of thinking, but for about six months I did it and there you have it. At some point, I realized it was sad and mean and weird. Mostly, it was unproductive, and I figured I might have more luck figuring out the boy in front of me if I stopped imaging the boy I thought I wanted.
In the past ten years, I haven’t looked back. He is who he is, and it is pointless to ruminate otherwise. I do, however, occasionally wonder what kind of person—what kind of mother—I would have been if he didn’t have autism.
Watching my tall son walk up and down the diving board while Joe dozed in the chair beside me, I wondered it again. Who would I be without this boy and his spectrum diagnosis?
Would I have a career?
Would I have five kids?
Would I still be married?
Would I know how to pray with abandon, or do Bikram yoga, or tell a social story?
Would I be rich because I wouldn’t have spent so much money on Redbox and ITunes?
Would I be well rested because I could sleep past 5:42 every morning and stop waking up in the middle of the night wondering what will happen after I die?
Would I stop trying to look into the future the way a fortune-teller looks into her crystal ball, trying to predict how it will all turn out for my Jack-a-boo, my Jack-Attack, my little-big boy who once upon a time was christened John?
Would I one day be an empty nester?
Would I worry about grades all the time, and rant and rave when my oldest son Joey brought home a B+ in algebra, telling him to study more—to work harder, to do more, to be better?
Would I think a person’s character is measured by a letter grade, his value determined by performance on a test or the length of his book reports?
Would I think marriage counseling was for the weak?
Would I know the real meaning of unconditional love?
Would I know what it feels like to long for the season’s change—for New Hampshire’s wintry days to lengthen into a green spring, and eventually summer? Oh, sure I would say I can’t wait for spring and won’t summer be great and all that. I would probably mean it, too.
But would I know the visceral need change; the need for the sun to shine more brightly and the dirty snow to melt and my boy to return to me once more from the depths of his besieging anxiety?
Would I understand the power of medicine? Or would I be one of those, let’s say, judge-y people who stopped listening the second someone mentioned giving their kiddo a pill every day?
Would I know how to root for the underdog?
Would I have had the perfect family?
Would I be happy?
I guess at the end of the day, it’s really hard to know who I would be without Jack. It’s hard to know just how much autism has or has not changed me as a mother, as a woman, as a person. But whatever lessons I’ve learned about marriage or report cards or yoga or prayer, I do know two things.
There is no such thing as perfect, and there is no such thing as normal.
I looked up at the diving board again. I shielded my eyes against the June sun and saw my boy climb up onto the long white platform. I watched him pace and turn and rub his nose. I heard the lifeguard shout out, “Come on, Jack! You can do it!”
I breathed in the warm summer air that was slightly tinged with chlorine and I relaxed back in the chair and I thought just one single thought.
I am happy.

June 20, 2016 @ 12:25 pm
Carrie, This is a wonderful post! Thanks for the wonderful reminders…
June 20, 2016 @ 1:51 pm
Carrie, I admire your candid admission to daydreaming about what life might’ve been like if Jack hadn’t been diagnosed on the autism spectrum. Just the fact that you can admit it shows how far you’ve come. Thanks for sharing your innermost thoughts with us. It makes us realize we’re all in this together.
June 20, 2016 @ 3:40 pm
Carrie, you are sharing every spectrum mom’s thoughts and putting it out there for others, making them feel less alone in this journey. That is a huge service to everyone! When I saw the picture of Jack on the swing it made me think about my son John, who still loves to swing at age 36. We have a glider in the porch which looks a little more appropriate and fulfills his need for movement. Raising a child with autism is not for sissies. We learn to have a tough skin in time and we will never stop worrying about what happens when we are no longer here for them. Believe me, it is a constant thought for someone my age. My mantra is to stop worrying about something I have no control over. Wish I could. Hang in there, you are doing an amazing job.
June 21, 2016 @ 7:52 pm
I’m obsessed with your writing. I am so glad I stumbled upon your site after friending you on Facebook… And look forward to your Monday writing. Our lives are very different, yet somehow I feel I relate to your posts. You are inspiring, talented, and I admire you. You are definitely making a difference in so many people’s lives.