This week I am putting aside my art to discuss something near and dear to my heart. It begins with a story:
About 7 years ago the kids and I participated in an Autism Walk at a nearby park. We had only just moved to the area and I was still trying to find my footing.
Many of you know that my oldest son has Autism. He was 7 at the time. The others were 4 and less than 1. By attempting the walk, I had hoped to meet people and gather some resources to help me better navigate “the system”.
But all I did was chase after N. while trying to keep the double stroller with the other two from getting stuck in snow banks.
While this was happening, a woman pulled up in a car. She told me that she knew that there was an Autism Walk going on and wanted to give some advice. She then proceeded to tell me about the difficulties with her teenage Autistic son. Her advice was a warning that the teenage years were extremely rough.
I thanked her (because that’s what I do) and watched her drive off. I’m sure she felt happy to give her advice to someone, but I felt terrible! The only thing I got out of that Walk was the knowledge that it was only going to get worse for my son.
Now that I am a seasoned Mom and have navigated “the system” for some time now, I can see that day for what it really was. I probably should not have attempted to do the walk without my husband (who was out of town) or another adult to assist me. Then I could have talked with others and gathered resources with less stress.
And. That woman was not giving advice- she was looking for help. It took 7 years for me to realize that.
Autism is not an easy pill to swallow. With it, we have traversed many hurdles. But, the teenage years aren’t necessarily horrible. They are actually kinda fun!
If you would have told me even a few years ago, I would have said, “But what about that woman who drove up to me at the Autism Walk?” That’s how much power she had over me and how much I had come to dread the teenage years!
N. is now 14. He is wonderful. That’s not to say there aren’t growing pains and some teenage angst going on. But what I’ve learned is that you’ve got to look past the disability and past the teenage angst. What he and any teenager needs, regardless of their disability, is love, patience, support, and kindness. It’s not always easy, but it doesn’t have to be hard.
I feel sorry for that woman. Who knows what her situation was? I can only guess. Perhaps her husband or partner just couldn’t take it anymore and left her to care for her son alone. (Some sources claim there is an 80% divorce rate among parents of autistic children.) Perhaps she was not getting the services she needed for her son, or perhaps she was just tired of the daily grind.
But I also feel sorry for that younger woman with the 3 kids trying to do the Autism Walk. She needed encouragement, not gloomy advice. I’m glad she could eventually find the support that she needed..we needed. (and found with the countless wonderful individuals that have assisted and advocated for our son over the years!)
April 2 is World Autism Awareness Day. It’s not just an awareness day for the 2 million affected individuals in the U.S. (and tens of millions worldwide), but for their parents, teachers, relatives, and friends. The message is this: There is hope. There is a network of people out there that have navigated “the system” and have walked the same path.
A good place to start is Autism Speaks. Included in their website are FAQs and resource guides. One resource that was added within the past few years is the 100 Day Tool Kit. It was created specifically for newly diagnosed families to make the best possible use of the 100 days following their child’s diagnosis. I wish it had been available to us back then, but I’m so glad it’s available to others!
Do you have a loved one in your circle of family or friends affected with Autism or showing possible signs of it? I ask you to please share this article with their caretakers if it may give them hope.
Have A Great Week!