Friday, February 11, 2011

Autism - Alternative Lifestyle

Nick and Evyn at the Beach
Nicky will be okay if we take a break from "Autism's Schedule"  When Nicky started getting early intervention we never missed a session and if a therapist cancelled, I would really get upset, almost defensive and immediately I was all over them to make it up! I asked myself  "don't they get it..he needs to get better. He needs his therapy, all of it, every bit he can get!"

On some level I believed that if he missed a session, he might not get better. A missed session could change his outcome and it would be me who took his chance away. If I didn't do everything I could  do than I was not doing everything possible for him to recover, or have that moment I'd read about. You know, the one where the kids just suddenly connected, and snap out of it as a result of some intervention.

This is what happens when parents are left to fend for themselves to care for a child with an illness that has no cause or cure, you hold on to what ever you can.  So, Nicky was loaded up with therapy, the only thing proven to help and I was determined to get him every minute of it I could, because that was the only thing I could control. Therapy was the ONLY door to better, even if I didn't know what better intervention/therapy became our life.

Ten years into this journey I realize he's not the only one who has had therapy everyday, so has his sister and so have I. Looking back it's so clear that Autism takes center stage in ways you don't even notice. You just slowly slip into an alternative lifestyle, where life revolves around not the sun, but around Autism, 24/7.  Wow.  I'm not mad at me, I know my desire to help him drives me to do all I can and that's a good thing. I'm certain that if Nicky had not had intensive early intervention he would not be where he is today. At the same time, I really didn't notice how much I had grown accustomed to giving up.

Last weekend something changed, the fear of missing a session was gone, and I wanted to get away. I cancelled his therapy, without any guilt and took the kids for a 36 hour trip to the Beach. It was wonderful and for the first time I knew I had really accepted that Nick's autism isn't going to disappear, because we miss a session.


  1. Sometimes the best therapy is simply "living life" LOL I too spend my time thinking about and fighting for kayla's therapy. The there are days where we both need to get away. This weekend was a last minute camping trip something we had never done and it was awesome. We learned that she too can deal with spontaneous fun. Who needs a schedule LOL? Once back home she surprised me with showing me she new the names of all her shapes and new the words for them as wel as the words for the numbers 1-20. Today she syrpride me by having learned 8 sight words from her flash card that we strted showing her yesterday. All this after some R&R :)