When I Thought Our Diagnosis Was the End of the World


“Your son meets the criteria for Autism Spectrum Disorder.” 

Night of diagnosis Those were the words an evaluator had the nerve to tell me in my own living room on December 12, 2014 at 10:45 in the morning. I’d expected to hear those words for months but even so, my world came crashing down. The two evaluators explained that my then 22-month-old son now qualified for ABA or more hours of speech and occupational therapy through early intervention. Selfishly, in the back of my mind, I wondered how I was supposed to live with this for the rest of my life.

Would he ever speak? Would he be able to play team sports, have friends, get married and lead a fully independent life? Would we be able to do all the things we wanted to do with him? Would this diagnosis all of a sudden change who he is overnight? I couldn’t stop my head from running wild with irrational thoughts. I wanted to take my little boy and just hug him and never let him go.

The day after was the hardest day of my life to get out of bed. It was our first day of living our “new normal.” What would that Saturday morning bring? We got up that day and went about our day as usual — going to Target and then coming home for nap, lunch, etc. — all the while I was trying to hide my tears. From that day on, I began doing my research on ABA and other types of interventions we could do with him at home. I looked at adding more vitamins, going to a gluten-free diet and adding a probiotic. I immersed myself every waking moment in blogs, learning how experienced parents had made it through their first days, weeks and months. I allowed myself to cry and be sad about it, to mourn the childhood I’d dreamed of him having since I found out I was pregnant. I was mad, sad and determined. I knew the first two emotions would eventually subside. But our determination to ensure Michael would do everything any other child would do, would not. My husband and I promised we’d support each other and stand strong together instead of letting this break us down. We had our support system in place, but it wouldn’t be until about a month later when I began to realize that this lifelong diagnosis we’d just received was not the end — in many ways he was born again. 

After his diagnosis, there was a three-week transition period from early intervention to the new autism-based agency. We began to receive ABA almost immediately. We are very early into this, but in the two full weeks his new therapists have been working with him, he already has the hang of phase one of PECS, gives us high fives and looks for us to praise him. He sometimes joins us in clapping for him when he does a great job. He also can now follow simple directions — something we worked on for months prior. I know  we have a long and arduous road ahead of us, where things can change in the blink of an eye, but if I could go back to even one month ago, I would tell myself that an autism diagnosis certainly isn’t the end of the world — not even close.

Michael is going to have the awesome childhood I’d imagined for him and more important, he’s still the same loving, cuddly little boy he always has been. If possible, our love for him has grown. Through therapy and working at home with him, he’s going to be taught everything he needs to know but somehow, I believe he will end up teaching me more. 

Piggy Back Rides

Want to end the stigma around disability? Like us on Facebook.

And sign up for what we hope will be your favorite thing to read at night.

TOPICS
JOIN THE CONVERSATION

Related to Autism Spectrum Disorder

10 Inventions Revolutionizing the Lives of People With Disabilities

Robot-takeover aside, we’re all for more technology — especially tech that helps make life drastically better. Here are a few examples of incredible inventions making the lives of people with disabilities easier all over the world. 1. This piano that can be played with your eyes: Eye Play the Piano is a system that allows a person [...]

What I Wish I’d Known the Day My Twins Were Diagnosed With Autism

My twin sons were diagnosed with autism almost 12 years ago. If I could go back to that diagnosis day, I would tell myself this: The diagnosis won’t change your kids. They are the same wonderful children, but now they have a diagnosis. The diagnosis will open doors for therapy, respite and Medicaid-waiver programs. Autism will [...]

A Decade With Down Syndrome: What a Difference 10 Years Has Made

This past Saturday, we had an opportunity to see what a difference a decade makes from the day you receive the diagnosis that your child has Down syndrome. This past Saturday, our friends Jim and Mynique McDonnell threw a birthday party to celebrate their oldest child, Parker, turning 10. It was quite a celebration. Jim [...]

How My Son’s Life-Threatening Condition Made Me View Food Differently

Five years ago, I thought I was an expert about diets. A lifelong calorie counter, Weight Watchers attendee and portion controller, I figured I knew nearly everything there was to know about special ways of eating. Show me a food and I could tell you its nutritional information and three healthy ways to cook it. The [...]