I remember the day that a vortex of words swirled around my head as the world shifted under my feet. I felt the hair on the back of my neck rise. I felt the tears I didn’t want to acknowledge held back. And all I could think was, “Keep asking questions. You have to have more questions.” Because when you stop asking questions and they walk you to the door and you step into the sunshine, your world will be a completely different place.
Looking back as one always does, we beat ourselves up and ask, “Should we have seen it?” Our beautiful baby, Caleb, was as new as our experience being parents. He was tiny, he was perfect, he was ours. And for his first year while we lived in Mexico, strangers cooed over him and snuggled him up every day. They loved that he was Mexican by birth and that his eyes were bright blue, but they always remarked, “El es muy serio.” I would take tons of pictures just to get one of him smiling, and usually I would have to tickle him to get that. We used words like observant, intense and concentrating to describe him. It just never occurred to us that those were terms less commonly used with babies.
Once we moved back, I remarked to the doctor I had worried about his hearing because he never reacted to us calling his name. That he was completely terrified of the vacuum. That he loved his board books so much that he ate them — all of them — down to the spine. When he was upset, it would take over an hour to calm him down.
As the year rolled on, we noticed more. Caleb’s speech and walking were delayed. He could repeat movie lines but not individual words. He would repeat anything you said to him but never pointed and asked for things. His favorite toy was a cooler. He would go into tremors at loud noises but did not seem to feel pain when he hurt himself. He would run into furniture over and over again. Sometimes he would seem to lock up, and you would have to shake him to get his attention. And we would look these things up and convince ourselves he didn’t have all the symptoms of autism spectrum disorder (ASD), so we should just wait and see.
When he was 28 months old, we finally had our epiphany (or it had us). We went to a family gathering where there were oodles of kids, and since we didn’t know other children his age, we thought he would love it. But when he walked into the melee of boisterous, laughing children, he just laid his face down on the floor. We thought he must be sleepy, so we put him in a bedroom to nap. When we went to check on him, he was standing in a corner tracing on the window. We tried to take him back to the kids’ room, and he just laid his face down again. So I watched. And I finally realized he was actively avoiding other kids, he never answered to his name, he didn’t make eye contact, he didn’t “see” other people and he was completely isolated.
We called a pediatrician. She didn’t believe us, but thankfully, she did send us on to the Child Development Services Agency (CDSA). There, a team of amazingly gentle and caring people diagnosed Caleb as having mild-moderate autism and sensory processing disorder.
I somehow knew and yet was stunned at the same time. Terms like proprioceptive, vestibular, auditory processing, IEPs, occupational therapy and echolalia swirled around in my head trying to catch hold. And I was terrified. Would he graduate? Would he drive a car? Hold a job? Live on his own? And the burning question I still hold most important: Would he fall in love and have someone fall in love with him?
As a mom, could I do enough, could I understand, could I reach him? The world — and all the expectations you held in it for your child — changes at that moment and there is nothing you can do about it.
And the thing that no one tells you about is how lonely it is. How separate you feel from society because of the way it reacts to him, to you, to us. The stares, the nervous twitters, the extremely rude comments. Onlookers who judged you because your child had a meltdown in public and started hitting himself in the face. The parents who pull their children closer like your child is contagious. The people who say things like, “He doesn’t look autistic,” “He will grow out of it” and “I could tell. I knew there was something…” And then they realize they were about to tell you your child was “wrong.”
And the literal mother of all concepts that ASD is caused by something I ate, I did, or worse, that I didn’t do enough of. The friendships that dried up and invitations that disappeared. Him trying to understand the world and me struggling to help seemed unfair enough without everyone else’s uninformed opinions, indifference or disregard.
So I learned to speak out. To be comfortable sharing Caleb’s diagnosis and story. To be open about who he is and how difficult moments can be. To never, ever, ever judge someone else because our paths as parents and as families are difficult enough. To be a good listener and strong supporter of other families on the spectrum. To be honest enough to seek support when I need it.
Our journey has taught me so much about myself and so much about Caleb. It has taught me how to truly see my child as he is. That to reach him and to teach him, I have to meet him where he is.
And to think back to that day, I remember clearly how it felt when I stepped out of the CDSA with his small hand in mine and took a deep, dizzying breath. How I sat at the wheel afraid to leave, turning the car on but not over, and then hearing that small voice belting out “Sesame Street” disco songs. I looked into my rearview mirror at my beautiful, smiling child who wasn’t a diagnosis. He was just our son. And now, we knew we had a path to reach him. I smiled wide at him and turned the car over.
There are many excellent sites and resources for learning about autism. Here are a few that were helpful for my family:
If you know a family with a diagnosis, I feel the best thing you can do is give them opportunities to hug, to listen, to laugh, to cry and, most importantly, to share. With current autism spectrum disorder rates as high as one in 68 children, according to the CDC, I believe we all need to know how to support families already out there.
A version of this post first appeared on The Snap Mom.
The Mighty is asking the following: What’s one thing you thought on the day of your or a loved one’s diagnosis that you later completely changed your mind about? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.