Tuesday, September 15, 2009

Running the Race

Having a disabled child is not a's a marathon. You have to realize that the finish line is a very LONG ways away. Possibly, a lifetime away.

In the beginning, I tried to run this marathon as a sprint. All I could think about was what did I need to do to beat Autism. It was a quest, a drive, an obsession. I spent hours, days, weeks on the computer researching. I attended conferences, and checked out TONS of books from research libraries. I then planned therapies, changed DJ's diet, went to many doctors, and spent countless hours driving to and from Phoenix.

I held this pace for two and a half years. It was certainly worth it as my son has recovered a tremendous amount.
But......we still have so far to go.

The difference is now I work at a bit slower pace. Instead of driving to Phoenix every week, or spending endless weeks there, I now go up once a month. I have taken on teaching DJ much of the therapy at home using my OT, PT, and Speech therapists as consultants. The work is still there is just slower and more deliberate. The gains aren't as obvious short term. We are looking for much longer term skills that will help him function better in the real world.

For myself, I have learned to accept and cope. I work the programs that DJ wants to be involved in like AWANA and church preschool. This way, I can intercept for him when I need to. It's still unbelievably challenging and time consuming but I'm enjoying working with other children as well as my own son.

The major difference in my life today is my mindset. DJ and I have good days.....and bad days. Some days he is more "with it" than others. Either way, he's my son and I have learned to stop nit picking all his behavior. I have learned to let go. I will continue to do what I feel it takes to make DJ healthy and recover him but I will laugh, love, and relax a little along the way.

God has blessed my family with so many things.....I guess we can bare the burden because of the blessings. Autism has taught me that is the key to living.......finding joy in the journey. To find the joy sometimes you just have to let go the reigns........and just live.