by Marcia Hinds – Megan and Ryan’s Mom
It is not like I woke up one day and BAM my kid was better. Although Ryan is now an aerospace engineer, his recovery from autism was S-L-O-W. It took years. After two steps forward, he’d take one step back. Sometimes it was two steps forward, three steps back.
In the beginning of our autism nightmare, even I didn’t believe my son could get better or have any kind of life. Ryan had too many strange behaviors. Most times he acted like we weren’t there. I wanted some sign that he understood or heard anything we said. He gave us nothing. When I’d ask a doctor or teacher if kids with autism ever got better, their silence was my answer.
Back then, Ryan didn’t cry, he screamed. He made strange noises as he went from room to room turning on and off the lights over and over again. The worst was when he’d bite and squeeze his sister so hard she’d cry. Our family gave in to Ryan’s routines to prevent even more explosive behavior. That worked in the short run, but it didn’t really help him. Mostly, it just prolonged his stay on Autism Island.
The only reason I didn’t give up was so I could tell myself I had done everything possible when I had to put Ryan in a group home.
It was not one thing that helped Ryan recover. It was a combination of many little things that caused his immune system to function better. Treating Ryan’s compromised immune system just made it possible for him to learn what he couldn’t before.
Then the grueling work of catching him up on all he missed started. Our family using our own version of applied behavior therapy (ABA). In spite of my insistence that change needed to happen immediately, (preferably before lunch) the change in Ryan’s behavior was excruciatingly slow.
When our children grow two inches taller in height we don’t notice it, because we see them on a daily basis. It is kind of like that with autism. I sometimes didn’t see the change in him or any sign of improvement.
But, I never missed it when Ryan did something wrong. All it took was one good meltdown to forget everything he did right that day.
When my son was still in middle school, my dream that maybe someday he could hold a job at Mc Donald’s and live independently. I couldn’t imagine him getting through high school. When he was in high school, I couldn’t imagine him dealing with college. I never imagined his life as it is today. I never thought what he accomplished was possible. I tell parents not to judge their kids outcome by how awful they act right now.
I tried not look too far into the future. Instead I’d focus on changing things one behavior at a time. Yet, there were times I was hanging on by my fingernails. Sometimes I didn’t have a plan, and had no idea of what to do next. But I learned to trust my instincts and just keep going no matter how exhausting and emotionally draining autism was.
Regression is part of recovery too. It was hard to watch, and difficult to understand. Why did my kid act more autistic when we were doing all these medical treatments to make him less autistic? Regression is scary! My gut reaction was to stop any new prescription when it seemed like it was making things worse. But, eventually I came to understand that Ryan’s body needed time to adjust to the medication changes. Still I worried constantly. What if he kept going downhill? What if he didn’t come out of it this time? It is hard to keep at it, when you are Chicken Little and are sure the sky is falling. Also, it was impossible to tell if any deterioration in behavior resulted from a change in medication, a problem at school Ryan couldn’t tell me about, or if he was about to come down with some illness.
Back then I wish I had known God allows U-turns with autism treatment. Don’t panic when something isn’t working. Try something else. You don’t have to get it right on the first try. The important thing is to never give up until you find the answer for your child!
NOTE FROM MARCIA HINDS – Megan and Ryan’s mom:
Ryan became an aerospace engineer, because he received proper medical treatment combined with behavioral, and educational interventions. To preview my book, “I Know You’re In There – winning our war against autism”go to Amazon or my website www.autism-and-treatment.com
Contact info for Marcia:
Phone: 805 497-8202 Email: For help finding a doctor firstname.lastname@example.org
There is more info to help on my website.