Michael was my first baby and he was an easy one. He was fairly quiet, took very long naps and even at 12 months he could sit by himself and look through books for an hour at a time. He was a bit on the later side of crawling and walking, but these things came in due time. His words, however, did not. At 15 months, at 18 months, I was still waiting to hear his first words, to see him wave bye-bye, and to have him blow me a kiss. Despite my efforts to have more concrete answers and to have him evaluated for autism, which I was certain was a possibility, it took another full year to receive that diagnosis.
An Army move, a second baby, and a long waiting list to see a developmental pediatrician contributed to the delay in diagnosis for us and are just a few of the reasons why it can take so long for young children to be diagnosed and to be able to start appropriate treatment. I actually felt that the diagnosis was the easy part compared to the next steps. I wasn’t so much rocked by the news of his diagnosis as I was about what to do next. The team of specialists who diagnosed Mikey did not recommend a course of treatment for him. There was no guidance from the doctors about therapies that might help him. Instead we were handed some generic information about autism and a pamphlet about local social service programs – all of which were a two hour drive from where we lived. The huge volume of info on the Internet was totally overwhelming and let me to more questions than answers – there seemed to be a lot of quick-fix fad therapies out there.
And so the learning curve was huge about what to do for Mikey – about what was going to be the best use of our resources. I felt the intense pressure of time because I knew that intense, early intervention was the greatest hope for the best possible outcome for Mikey. It felt like his whole future depended on what I could do for him right then. We eventually discovered that ABA therapy, the gold standard of treatment for autism, and the one our Army health insurance covers (we are the lucky ones!!!) was not available in our area.
So we had to make some tough choices as a family and make some big changes to get Mikey the help he needed. My husband had to choose between pursing the jobs in the Army he really wanted and asking for an assignment that would offer Mikey the best treatment options. The kids and I moved ahead of time to his next duty station in order to begin treatment. But despite these any other difficulties, we were of course grateful to have the opportunities to get Mikey the help he needed. And now, six years later, I can definitely say that those choices and Mikey’s hard work has paid off. He is a talkative, compassionate, bright and happy child with a great sense of humor who I know has a whole lot of good things to offer this world.
We are excited about the upcoming LightUpColumbus for Autism event and can’t wait to run alongside everyone who is there to support autism awareness and all of those affected by autism. Be sure to look for Mikey who will be running and probably cheering on all the runners the loudest!