Our autism journey began during a routine checkup when our son Miles was 3 ½ years old.
When the exam was over, and Miles looked good and healthy, the doctor asked if we had any concerns. My wife asked a simple question about Miles’ speech development. Yes, Miles spoke and answered questions, but he never asked questions and most people didn’t understand him. There was never conversational speech. She mentioned his uncanny ability to mimic and recite entire episodes of his favorite shows, unexplained meltdowns in the car and on shopping trips, and his amazing talent of writing and drawing in the exact fonts of original logos he saw.
The doctor mentioned “the spectrum” during the appointment and recommended testing through the county. My wife asked, “What spectrum?”
My wife didn’t leave the appointment with pamphlets, guides or referrals. She left stunned with the realization that there were medical terms for some of Miles’ behaviors. She had a million questions and no answers.
Within days, we Googled everything we could on Autism Spectrum Disorder (ASD) and asked many questions. Unhappy with the county testing experience, my wife was certain we should find specialists to evaluate Miles before letting the school district make decisions on his education. We are forever grateful for recommendations to see Dr. Christine Barry and Dr. Nancy Roizen at University Hospitals for initial testing and diagnosis.
Years of Applied Behavior Analysis (ABA) therapy, physical therapy (fine motor), intensive private speech therapy, in addition to school programs during preschool and elementary school, followed. These were intense, stressful years for Miles and our entire family, but critical components to his development and success in a typical school setting, which was our goal for him.
We celebrated progress, agonized over setbacks – Miles stopped walking down stairs, wouldn’t go on playground equipment, became a very restrictive eater, had severe meltdowns if we drove on certain roads, developed unexplained rashes and sensitivities to fabrics and odors, for example.
For me, once I learned of my son’s diagnosis, I quietly discussed it with some close friends. It’s not something that you share with everyone as you try to face the tidal wave of emotions and worries that wake you in the middle of the night. But a friend told me an encouraging story about someone she knew with a 6-year-old son with autism. We set up a lunch and I was amazed to learn how similar his son had been at Miles’ current age.
This friend cited several therapies with acronyms that I had never heard of before. He mentioned that Milestones Autism Resources had been a big help to him. Since we were definitely in need of help, I visited the Milestones website and couldn’t believe the amount of local resources and activities listed. When we learned Miles qualified for Extended School Year (ESY), we used Milestones’ guidance and enrolled our son in Friendship in Teams (FIT) Camp.
I will never forget the feeling I had as I walked out of the building, leaving Miles on his own with people he had never met before. I was worried, even a bit scared, that I would receive a call that he wouldn’t be able to make it through the day. But that call never came. The staff at the camp knew exactly how to work with him. I went from feeling alone to feeling like I was a part of a sub-culture – almost a movement – to help these children become all they could someday be. It was an amazing feeling of empowerment compared to the lack of control we had just experienced a short time earlier.
My first year at the Milestones Autism Conference was just as powerful.
Here was a large group of professionals and parents who spend their lives helping these children and young adults. In just days, I learned more than I did in the previous year of doing autism research on my own. I had contacts in every aspect of what Miles would need. It was exhausting, but rewarding and empowering, too. I know with certainty that Miles would not be as far along in his development had I not attended the conference. I also appreciated hearing different perspectives of how people approached their care. It helped me understand that the treatments that helped my son may not impact the next child in the same way. Each child is so different, there is no absolute right and wrong in terms of solutions. I also witnessed overwhelming love, not only from parents, but also from intervention specialists and a host of others who help parents and children.
Milestones was started by parents who wanted to help each other as well other families struggling with ASD. I have met countless parents who have shared so many important lessons that I would never have learned myself. It makes life so much easier to glean wisdom acquired by those who have faced the same issues.
Many parents feel alone in this journey, but Milestones helps connect us with the incredible supportive community we have here in Cleveland. You never have to feel alone if you have Milestones on your side.