Years ago, when Aiden was diagnosed, I had been forewarned that he had many of the “red flags” of Autism. I prepared myself emotionally, to take it and just fight like heck for my child. When the psychologist arrived at my home, I had already accepted the diagnosis, or so I thought.
I have spent years transparently sharing Aiden’s journey with friends on social media, in hopes that it would raise awareness in the small community that I live in, as well as where I grew up. I know what autism is, it’s been a part of my life since I was a child. My brother has it.
But like everyone says, everyone on “the spectrum” is different. As Aiden grew up, I started to see HUGE progress. Everyone always says “Oh, he must be on the high functioning end of the spectrum.” and “I never would have guessed that he was autistic.” Aiden’s teachers and school staff have always praised his success and left me feeling like I wouldn’t have to worry.
Fellow autism moms nudged me to begin the process to obtain services that he couldn’t get without lengthy applications and waiting periods, but why would I have to? My son was doing GREAT! Just ask the CPSE chairperson! I’d smile and consider it, but the required information session just didn’t fit into our schedule. I didn’t feel like I needed to make it a priority, at the time.
Slowly, I began to see the services that other children were able to get after their parents completed the applications. These services would be helpful for Aiden, too! So, I finally scheduled this required “Front Door” information session. I couldn’t stay in denial any longer. I was not helping my son by dragging my feet. While he was making progress, he could make more progress, given the right support.
I sound like a pretty well rounded, prepared and seasoned autism mom at this point, right? WRONG! The session began and words like permanent, life-long disability, etc. slapped me in the face. The realization that my son belonged within this criteria was like a punch in the stomach. I found myself fighting back tears as I sat in a crowded room of mostly seasoned parents. They were asking questions about services for their adult children. There I was, thinking about my 4 year old and how long “permanent” and “life-long” were.
My thoughts swirled in my head, trying to picture him as an adult. Would he still need these services then? Autism SUCKS! There is no way to know what the future will hold, until you’ve seen it happen. Then, it happened, the tears started to fall. I could hear the woman reading from her PowerPoint slides, but it was all jumbled with fear, anxiety, anger and resentment. A sucker punch, straight to the teeth, I felt that feeling in the back of my throat, like my windpipe was crushed.
Quickly, I brought myself back to the presentation. I couldn’t miss anything, there was too much at stake here. I listened intently, mainly because I was so incredibly angry for allowing myself to feel this way. My child is one of the fortunate children on the spectrum. I should be thankful! I shouldn’t be thinking these thoughts. I was there for one reason, to gather information. If I’m a whiny mess, I’ve accomplished nothing.
I convinced myself to listen again. I asked the questions I had written down, and the meeting came to a close. Do you remember when I mentioned crying in my car in Truths of an Autism Mom? Oh, this was one of those times. I cried, I ate too many doughnuts to count and I drove home, in silence.
So many days, I focus on the good that has come from the countless hours of therapies and behavior modification. Today, I was crushed by the uncertainty of the future.
I’m sure other parents of children on the spectrum have felt this way before. What was the hardest part for you?