As Autism Awareness Month wraps up, I feel a bit guilty about the bah humbug attitude I have had this year. Maybe it is because I have been at dealing with autism for over seven years, and I just don’t feel like getting in the “spirit of autism” this year.
In the beginning, I remember the rush each April would bring. I had never had a cause before, and it felt good to give back and to do something that mattered. I was going change the world, and I was going to do it all in one month! I helped at a booth at the mall, I gave a huge autism awareness cake to the school, I wrote articles for the school newsletters, wore my "Green Our Vaccines" shirt everywhere, posted all kinds of stuff on Facebook and even stood with a sign in an autism-related protest.
Now seven years later, quite frankly, I am tired of autism. I am tired of the fact that there are endless treatments to try for my daughter, and the guilt that goes along with picking and choosing which to try. If I try one new treatment, what if the other one was the one that was going to work for her? Usually we are doing so many treatments at the same time, how do I know which, if any, are really making the difference? When can I ever rest with the peace-of-mind that I have done everything I can do and just accept who she is?
The unknown of autism is the hardest part. Sometimes I think it would be easier if someone told me, “Lizzie has reached her potential. Accept this and move on with your life.” This hope that I cling to that some day she can be “normal” is draining me and makes it really hard to live in the now.
I was sitting in the special needs suite at church this past Sunday, and an eight old girl named Amy* came bouncing in with a huge smile on her face. She looked at everyone in the room and engaged them with her eye gaze and beautiful grin. Just as she was flashing her pearly whites at me, she unexpectedly reached her hand over and with a tight grip and a smirk on her face, grabbed another little girl’s pony tail and yanked her to the ground by her hair. Ouch! The little girl screamed in pain as her parents tried to console her. Amy was quickly escorted outside by her Dad and scolded.
It didn’t matter how long her Dad scolded Amy or how severely she was punished. It wasn’t going to sink in. I could tell by the look on his face that he knew this too and was just doing it for the sake of the injured little girl’s parents. Amy has a syndrome that keeps her from progressing, and her future is set. The experts know what caused her delays; it is in her genes and there is no hope for a cure. Her parents could do all therapy in the world and the chances of her ever being on her own are next to nothing.
As I watched this, I realized that somehow I had lost sight of the fact that all the therapy options are a gift! At least I have the hope that my daughter could be cured someday. I need to keep going not only for my daughter, but for all the other kids with autism and the families of kids with syndromes that won’t ever get better.
We are the lucky ones. Our kids have autism, and we have hope! Although this hope is sometimes piercing my heart like a double-edged sword, remembering Amy will help me to take the fight day-by-day and not give up. Will you join me?
*name has been changed to protect the identity
Julie Hornok has been married to her wonderful husband, Greg, for 14 years and is the mother of three children, Andrew, Lizzie and Noah. Lizzie was diagnosed with moderate autism at 2 years old and now, at age 9, is mainstreamed in school and enthusiastically enjoys relationships with friends and family. Julie feels blessed that her daughter has come so far and enjoys spending her free time helping moms with a new autism diagnosis and sharing the small bits of wisdom she has learned along the way. Julie also loves to give back to the community by putting together special needs events. Feel free to see Lizzie’s progress on video on her blog www.lizziehornok.blogspot.com.