Midway Mindset

Lessons Learned – It's Never Too Late to Take Flight

I had my third child, seven weeks early. There was no denying that three increasingly difficult pregnancies and pre-term labors meant that my birthing days were done. But, I always thought that someday I would adopt a child with special needs – an exceptional child that someone gave up on; a sweet soul who needed extra attention; a child deserving of extra love and support to make up for what was left out at birth or may have been lost along the way. What I didn’t realize was that, just like Dorothy in the Wizard of Oz, I didn’t need to look any further for my heart’s desire than my own backyard.

When my youngest son Alex was 22 months old, I sat in a speech therapist’s office. I had brought him there because, after knowing about 50 words, Alex had gradually stopped speaking. Though the pediatrician tried to assure me that it was nothing, I knew, as a mother knows, that it was something. It wasn’t just the loss of words that kept me awake at night. Alex walked in circles flapping his hands. High-pitched squeals gradually replaced his vocabulary. He stopped asking for help or showing any interest in sharing his world. He became a headbanger – any wall or object would do. He spent hours lining up objects instead of playing with them. In the car, the sound of our voices caused Alex to scream at the top of his lungs, his piercing cries forcing our stillness. Alex would then take a deep breath and sigh, his lip trembling as the tears dripped off his chin, relieved that the pain of our words had silenced.

I didn’t fully understand what I was seeing. And though I knew something wasn’t right, I didn’t know exactly what was so terribly wrong.

The speech therapist said the words that I didn’t have. Lots of awful, scary words. She said that Alex was surely autistic; that he was developmentally disabled; that he would likely never speak, nor would he ever go to a “regular” school or have a “real” life. She pointed to each behavior, every sleepless nightmare and convicted him, piece by piece.

“Look at this.”
“See that?”
“Watch this.”
“Oh, dear. How long has he been doing that?”

The qualities I held dear about the child I loved were suddenly on trial. And, being his only public defender present that day, I did what any public defender worth her weight would do. I hid in my car, looking at my sweet son sitting in his car seat, incessantly, happily, twirling the wheel of a truck.

I cried a lot while I watched him twirl, and then, I threw up in the bushes, hoping the speech therapist parked there the next morning. I remember the sun going down, my car, still in the parking lot. I didn’t know what to do, or where to go when your world is turned upside down. I felt like if I didn’t turn the key in the ignition, that nothing had changed. It started to get dark. I called my mom and dad. I couldn’t get the words out, yet they knew my universe had tilted. Come home, they said. Come home.

My husband at the time thought our son just needed time and love. If only miracles were that easy. We could give Alex time, and certainly, there was no shortage of love. But, our little boy needed a lot more than that. And from what I was speed-reading, he needed it quickly. The next few days are a blur of determination and panic. I cut through more bureaucratic bullshit each day than I could scrape off my shoes. Eight days later I had secured an appointment for a day-long evaluation with an agency that boasted “only” a six-month waiting list. The loudest, most repetitive voice wins. And though Alex couldn’t speak, I was speaking enough words for the both of us.

In the days leading up to his appointment, I started to see my son in the eyes of the evaluators. His behaviors became a checklist of symptoms.
I began to despair,

“Why MY son?” But, then I looked at strangers children in the waiting room on the day of Alex’s evaluation and prayed, “Please God, not them either.”

The news wasn’t good. There was a second opinion, and then a third.

By now, you’re probably wondering what was “wrong” with Alex. I was told that his development was disordered. (I could only think of my junk drawer when I heard this phrase. Everything was there, it was just a challenge to get to.) Some experts mentioned language and sensory integration problems. All of the experts concluded it was a form of autism. This 29-pound bundle of beautiful was only 22 months old old when they tried to take away his future with words I didn’t completely understand. And little Alex didn’t have the vocabulary to rebuild his tomorrows.

None of us really knows what time holds for our children after they’re born. We tend to think that once we’ve counted their fingers and toes that the cards have been dealt and we have a straight flush. I wish that were true.

But, when life cheats one of your kids out of something that you thought was their birthright, you are your own greatest hope. And you have to find the words.

Insurance wasn’t kind to autism at the time. Money was tight, and my husband was a non-believer. Denial often comes from a place of deep fear and love. But, it doesn’t sit for hours every day trying to teach the critical connection between words and objects. It doesn’t drive to physical therapy, occupational therapy, speech therapy and special needs preschool. It doesn’t pour every spare moment into reading and resources. My parents gave me $5,000 to cover the therapy, tools, and toys a young family and a head in the sand could not. I knew Alex was more than words and labels. And, I’d be damned if I’d let a stranger tell me what he couldn’t or wouldn’t ever do. Alex was in there. Somewhere.

With the advice of his therapists, he and I spent hours in his room each day, repeating the same activities. No distractions, no siblings. Identical routines. Rote behaviors, until he made that connection between words and objects, words and actions. We worked on eye contact, auditory processing, sensory integration…words that held little meaning to me just a few years before.

Two years later, Alex was speaking again – short phrases, but he’d come a long way. One of his favorite things to say was, “Mommy Do?” usually in the form of a question, when he needed help with something.

“Mommy Do?”

And, I would do.

One day he and I were playing with my daughter’s dollhouse. I was trying to sneak some reading from a pile of medical journals filled with autism studies a friend had lent me. I was paying him no attention. Alex tapped me on the shoulder with his sweet little hand. (For those that have loved an autistic child, he fucking tapped me on the shoulder! With his hand! Do you know how many years I had been waiting for this moment?) I looked up, my heart racing. Alex’s eyes looked into mine. He held my gaze for a moment (held… my… gaze…), smiled, and clearly said, “Mommy Do.” He wasn’t questioning IF I would do, he saw that I DID. What we had done together. He got it.

“Mommy, Do.”

I had dinner with Alex tonight. He turned 25 years old last week and recently graduated college. He’s an associate producer at the company I work at – the same job that I held when I began working there five years ago. He ordered a beer and we talked about my love life. Alex doesn’t really need me to do anything for him anymore and he looks me square in the eye when he tells me so. And, it’s more likely he’s doing for me these days.

I don’t know what the magic recipe was. We were blessed to live in an area with a plethora of resources and I had the time and energy to throw anything at the wall to see if it stuck. Some of it, I think, was luck of the draw. I don’t have the answers. I just know that I never gave up looking for them.

A few years ago, I ran into Alex’s best friend David from his special needs pre-school. He had been diagnosed with autism as well with similar behaviors, similar outlook as Alex. 18 years before they were virtually indistinguishable. David was now 21 years old, running down the grocery store aisle, flapping his hands, making high-pitched squeals. His mom looked on, hugged me, and asked me how Alex was doing. What progress had he made?

I watched David and knew his mom had used the same recipe as I did. For so many years, she had done and done and done. And, I had no words.

4 thoughts on “When Words Fail: My Son’s Autism

  1. Diane Wallace says:

    thanks for this. I sent it to a friend raising their autistic grandson. The school told me that Amy would never read from 1st grade on and to give up. I spent hours and time and today she has been to grad school and a professional copy writer on Madison Ave in NYC after working in LA. The mother’s do…


    1. I had no idea, Diane. If we all listened to what other people said our children would never do…I know you must be incredibly proud of her.


  2. Gary Lewis says:

    Wow! All I can say is wow. The more I learn about you, the more I admire you.


    1. Thank you. It’s been a journey!


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