Everyone is an expert in the blogosphere, well except me. That won’t stop me in 2013 because I’ve wanted to write about autism since my son was diagnosed at age two. It his hard to believe he is 14 years old. By now, you’d think I’d have the hang of raising a child with autism but I am still making mistakes. By blogging maybe other families with younger autistic children can learn from my missteps.
Yes, the HP Patch has already seen two previous autism blogs, however I will attempt to add another perspective on this growing epidemic. I refer to it as an epidemic because 1 in 90 children is diagnosed with Autism. At this astonishing rate, even if you don’t have a child with autism you probably know someone close to you who does have a child on the autism spectrum.
An autism diagnosis is devastating. Earlier on, while my friends still had aspirations of raising the first Jewish Female President of the United States I was frantically getting on waiting lists for the best Speech Therapist, Occupational Therapist, and Behavioral Therapist. During this period, I lost touch with my core group who I shared the same left-leaning politics, interests, and sense of humor and made new friends that I had nothing in common with but autism. All of a sudden I didn’t care if someone was a defense-of-marriage-act Republican, I just wanted to know if the gluten free diet they were feeding their kid with autism made any noticeable cognitive difference.
Over the years, my autism circle has expanded to the point where we have many things in common. I’ve also reconnected with my some of my high school and college friends. However, at times there is still some awkwardness with the parents of NTs (Neuro-Typicals...the politically correct term for “normal kids”). For example, as my friends are free to be spontaneous again, no longer scheduling sitters, I cannot make plans spur of the moment. I wish I could share the following autism etiquette with them in person but only have the nerve to put in a blog:
1. Please don’t tell me about the problems encountered bringing up a gifted child. It does not make me feel better.
2. Please don’t tell me that “it was meant to be”, “God’s plan”, “a gift”. I would sell my soul so that my son wasn’t challenged everyday by the barriers of autism.
3. Please don’t be fooled by the media’s representation of autism. It is not a quirky, fun label with a savant skill consolation prize.
In re-reading the above, I wish I could soften the tone and somehow convey the same message about autism. I know I am lucky to have a child who can talk to me, express love and bring me joy daily. I also know I am lucky to live in a community that has so many services for the developmentally disabled. It gives me such relief to see those with learning challenges safely maneuvering their way on our public transportation, stores and streets. Highland Park embodies the phrase It Takes a Village.
I don’t know if I am wasting my time attempting the Patch’s third autism blog. To paraphrase the Violent Femmes, the world needs another autism blogger like I need a hole in my head.
I will sign up for the Deerfield Patch so I get your blog. I am sure I will be all over the board on my blog since there are such highs and lows. I will try to balance it.
My least favorite are the people who say, "God only gives you what you can handle..." Are these people nuts? If that were true, God would be giving all these people the support they needed (financially, emotionally and vacationally - that's a new word I made up). But that's not what happens. Raising children is hard. And raising children with special needs is hard X 100. These parents are no different - they just rolled the genetic dice like we all did and that's how it landed.
I was motivated to write by your column. So really people should address their complaints to you.
I look forward to your blog posts, even though I don't walk in your shoes, I do understand the loneliness of a dx and the need to connect with others "like you." Education is key to understanding. And if someone new comes across your blog, I hope your experiences will help them to feel not so alone.
Thank you for sharing your heart felt, authentic feelings. I'm glad that you have this opportunity to enlighten the rest of us and to channel your voice of experience. Bonnie
Jill, where would you say your son is on the spectrum?
(Vicky, with this kind of topic, I declare a truce. You?)
Did you know I've written a few blogs since this original one including one this week called The New Scarlet Letter? I hope you'll check it out.
I think the kids in this area are very nice to the kids on the spectrum. Yes, I have therapist recommendations and I can put you in touch with other parents too for their recommendations. Feel free to email me at jcgoldstein@comcast.net