We didn’t know it then, but the day we drove those three hours down to the doctors office would forever change our lives & how we moved forward.
The first thing doctor #4 said to us when she walked in our room was “I feel like I know Aiden so well. I have spent hours reading through his chart & every report to test result this little one has”. Instantly we both felt a sense of relief to know that someone other then us that wanted to figure all of this out.
She went over all of the results of the EEG, talked about her thoughts on what she had read (previous reports, test results, etc) and said she wanted to know what our concerns were and what we had hoped to achieve at this appointment. What we wanted was answers & to know how to help Aiden. She spent more then two hours in our room playing with him, examining & observing him.
We did find out that day that the short & very quick episodes that he was having daily were ticks and that they were not always seizures. So to know that he only had a handful of seizures was comforting, but we still didn’t know what was causing the ticks. Her thought was to have Aiden tested for food allergies. By the end of that appointment, she said to us “has anyone talked to you about Aiden possibly having autism?”. Doctor #3 had mentioned it to us, on a friday at 4:30. What a way to start a weekend right! She was not making a diagnosis, but simply preparing us that it could be a road we would need to go down and explore. So it was back to the waiting game to see who could get Aiden in the quickest with the developmental pediatrician.
While we were waiting to hear where we would be going, we took matters into our own hands. Enough time had been lost between the time we met with doctor #2 and doctor #4. We couldn’t help but feel like the sand in the hour glass was starting to run out. Then the anger set it. If only doctor #2 had picked up on this, we could have started speech and occupational therapy a whole year earlier. At the same time being upset wasn’t going to change it so we had to do what we could to make up for lost time.
We were trying to soak up any and all information that we could on the subject of autism because we knew nothing and wanted to know what we could do to help Aiden. The first book I found and read was a real eye opening & amazing book. If you have not read “10 things every child with autism wishes you knew” then I suggest picking it up. It allowed us to begin to have an understanding of how Aiden processed this big crazy world that we live in. The more I read the more we began to understand & the more we were also trying to deal with the fact that our lives would all forever be different. Adam and I both handled Aiden’s initial diagnosis differently.
I wear my heart on my sleeve …. My first reaction was fear. Fear about how people would react to hearing his diagnosis, how other kids would treat him, who would be there to take care of him and fight for him if Adam and I couldn’t be.
I was angry because of the reaction we got when people found out about his diagnosis. No matter what people fear about the diagnosis of autism or say out of plain not knowing anything … you were not only talking about my son but also about every other precious child in this world who also had autism. I didn’t handle it in the best way when it happened. To be honest, even now I don’t handle it as eloquently as I wish I could. Autism is part of what makes Aiden who he is.
Answers at last …. I immediately had a new understanding of Aiden. Instead of spinning our wheels we now had a direction and concrete answers. I had a sense of relief to have an answer to help my son. I didn’t care what was wrong, we weren’t looking for a label or a magical moment just wanted a clear answer. It should not have taken this long, this many doctors, this many tests and this much wasted time to know what was going on. In that moment I had more respect for Rachel, for not giving up when they told us he was “normal” and fine. She kept fighting for him and was not going to rest until we knew what was really going on. To this day she has not stopped fighting for him and his needs, weather it’s the insurance company refusing to cover a bill or a service or the quality of the therapy he is receiving.
As you can see we both handled his diagnosis very differently, but so did many people in our lives. From some we got a much different reaction the either of us were expecting.
Stay tuned for Aiden’s story part 4