Wednesday, April 4, 2012

Autism Awareness Tidbit #4

Today's tidbit: Every child with ASD is completely unique.  There are many similarities with the condition across its spectrum.  With each unique child come unique parental responses.  Two examples come to mind: TV shows and support groups.

Well-meaning folk will tell you every show they watched that had anything to to with autism.  I know some people who LOVE the series Parenthood.  I watched the first season.  Beautifully and realistically written.  In order to emotionally survive, however, I could not invest in it.  Other parents of children with ASD love the show.  The show hits different people different ways.  When you HAVE a son named Max and you get him diagnosed...when you have to admit to friends and family that there's something wrong with your kid...watching the reenactment of that is not always a good time.  I am grateful that the show is getting a perspective across that is not always known to the general public.  It also took me some time to warm up to The Big Bang Theory.  At least that is a comedy.  We watch Sheldon, and we find in that actor comedic genius.  Not everyone sees their own son.  I joke that I live with Sheldon.  So many levels of that are not a joke.  Sheldon demonstrates the caricature of Asperger's.  It took me a bit to warm up the fact that America was getting a good laugh out of it.

Parent responses to support groups are another thing that is as unique as the child itself.  I was thrilled that there were support groups in my community.  My local society is fantastic and very active.  I am just at a point in my life where I feel like I am wading in the waters... I don't want to talk about being happy as I drown, or lucky to be in such nice cool water.  Because I am not one bit happy about autism.  I love my children, but I do not love this disease.  I get to watch as other children without it merge into social situations without a problem.  I get to hear about people who never have to think 10 steps ahead to prepare their children for life's unexpected stuff.  Yeah, I know.  There are other things that could be worse.  Yup, I got it.  But I still get to say that I am not OK with my kids being on the spectrum, and I don't necessarily want to sit and talk about it or be reminded of it more than I must.  My attitude shocks me as much as anyone.  I figured out not too long ago that everyone must choose their survival path.  We all have the same 24 hours to live...we all have to accept a certain mindset in order to do it.  I don't have to embrace things as other parents of children with ASD do.

3 comments:

Suzy said...

I get it, JoLynn; I get it. In fact, is was not until THIS year, after living with this diagnosis for 11 1/2 years that I was willing to even ENTERTAIN the idea of being in a support group with other parents of kids on the spectrum. However, for Kira to be a part of the Jr. High Social Skills Group at T.A.P., I am required to, at the same time, attend the parent support group with the other parents who's kids are with Kira.

We've only been involved for a little over a month, and I struggle, weekly, feeling like I hijack the meetings as I come in with copies of books and handouts regarding Paula Kluth coming to Peoria on April 28, the PUNS list, and whatever crosses my desk or computer in the weeks in between. I struggle with how to wear the mom hat and the educator hat all the time.

However, after our very rough night on Monday, I was glad I had other parents to ask questions about doctors, friendships, "typical" siblings, the pros and cons of medication, and more. My long-winded point is this, as different as are our kids on the spectrum, so are we as their parents. Just as they change and grow and have different wants and needs at different times in their lives, so do we.

I so appreciate your blog, especially this month, my friend. My life is better for knowing you, and you keep on liking and disliking different stuff than me, and we'll giggle as much as we can when we aren't too mad or tired.

I adore you.

jen31gifts said...

JoLynn it took me almost 3 years to talk to other ASD parents, even longer to talk to friends or new people I met about ASD. While I do meet with my ASD mom's for coffee every week we don't only talk about Autism we talk about other things.
Speaking for myself I have NOT embraced autism I hate it, I hate that my son struggles, I hate that he has changed schools so many times, I hate he was mainstreamed and the school decided they couldn't teach him.
What I can't do curl up in bed and be depressed. What I have excepted is I have to fight for him everyday and try to live a happy life and put more positive in the world than negative.
After deciding this I stopped going to "controlled" support groups for a while. I like my informal group of friends that don't only focus on autism but on what other things are happening in our lives.

Jen

JoLynn said...

Thanks, ladies. Empathy is a healer for me. I beat myself up for not having the "right" perspective, but I think those days are leaving me.