Thrown to the wolves.

After over a year’s worth of battles and struggles, on October 16^th, 2006 Andrew and Joel were diagnosed with moderate to severe autism. Hannah and I were so grateful to finally have a face for our nemesis. After swinging blindly at an unknown enemy we finally had some answers and the relief was overwhelming, but not as overwhelming as all the new questions that we faced. The doctor who performed the diagnosis visited with us for a few moments after he had seen both boys and handed us a nifty little copied article from TIME magazine about autism and little else. He offered no information on treatments or even what our next steps should be. I don’t blame the doctor for the lack of available information at the time. This was before news of the autism epidemic had reached the media so naturally the coverage and information was sparse. The magazine article covered the difference between the two primary methods of autism therapy which were ‘floor time’ and A.B.A (Applied Behavioral Analysis). In short, floor time is engaging in whatever activities the patient will allow in hopes to draw them out from within themselves and A.B.A. is interrupting the behaviors associated with autistic spectrum disorder and replacing them with typical social and emotional responses.

We were on a rollercoaster of emotion for the next few months. As far as we were aware, there were no local resources available for a family in our situation. Hannah remembers thinking, “There should be a book; something that tells us what to do next.” Nothing we were taught in school or elsewhere in life prepared us for the journey we were on. We felt like we finally had a purpose and a direction, but someone had just thrown us a trash bag full of puzzle pieces and told us to put it together. There was no picture to work from. We had no idea what the ideal picture of a child with autism looked like. There were no edge pieces, and any good puzzler knows to start with the corners. We felt as if there were no boundaries, nowhere to start. We had no point of reference and no knowledge of where or how to pursue one. As I’ve said before, as of five years ago autism was Rain Man as far I was concerned. The movie was my only point of reference, and not a very good once since the man the movie was based on didn’t actually have autism.

We had been working with a program call ECI (Early Childhood Intervention) where a therapist and something resembling a case worker would come to our house to work with the boys once a week. They were really sweet and helpful, but they didn’t have much more information on the subject than we did. Hannah started to research on the internet. It was all we knew to do. We found some pretty interesting treatment methods in those first few weeks and months.

When I look back at that chapter of our journey I’m a little perplexed by a few things. The ECI workers would commend Hannah and me in our efforts, but we felt like we were spinning our wheels. They asked if they could refer other parents with a new diagnosis to us for advice and encouragement. We were both flattered, but felt completely unqualified. We hadn’t accomplished anything. Our boys were still slipping further away, our marriage was strained, financially our life was a joke, and they thought we were an example? In reflection I think what may have been so commendable was our refusal to stay where we were. We refused to accept that our boys were lost. We refused to allow autism to steal our children any further from us. We had no idea how to fight it, but we were fighting. Fighting was all we could do to find any semblance of hope in the days that were darker than night.

Those first few weeks and months we were forced to face down some pretty harsh realities and we did it alone. Sure, there were family and friends around but by this point we had shut ourselves off from the world to a degree that those battles were ones that were waged within the privacy of our four walls. In some ways I think that emboldened us to fight just that much harder, but in other ways I know that we would have benefitted from more outside counsel and advice. Unfortunately the same thing that makes us perseverant also makes us stubborn. It’s often hard to walk the line between the two and more often than I’d like to admit we’ve fallen into selfish motivation for the life we’ve chosen to live and hidden behind a lie we called perseverance. We’re still facing the reality of our failures from those first days of our journey and hopefully we are learning from them.

Over time and across paths long since forgotten, we found answers. Each answer brought more questions, and each question set us on a quest for more answers. Years and what seems like an eternity later we have journeyed far together as a family. We’ve amassed resources and relationships that keep answers no more than a page turn, phone call or mouse-click away. It’s amazing to remember how clue-less we were back then and both encouraging and frightening to realize that one day we will look back at today and realize how clueless we are. Most of our answers came through the relationships that we built within the local special needs community. Doctors, treatment methods, therapy centers, books, articles, websites, and many other resources came from those who had direct experience with them and we slowly started to form our picture of what autism looked like in our family. Once we knew what it looked like, we started to picture how it could look. We actually started to dream again.