March 24, 2010

Kumbaya

Posted in My Take on Autism tagged , , , , , at 10:27 am by autismmommytherapist

Bitch, bitch, bitch.

No, I’m not referring to myself, although on many days and many occasions, this title is apt. Instead, I’m referring to a number of ongoing discussions within the autism community. There is a lot of kvetching going on in regards to different subsets within our little island of misfit toys, and I think it’s time we all played nicely with one another. I will begin by offering my personal, giant Kumbaya and best hug to anyone dealing with autism in their lives, no matter what you believe.

We have to start somewhere.

There are parents who feel that biomedical/alternative treatments have been instrumental in helping their children, and there are those who have selected a more traditional approach in trying to eradicate the symptoms of autism. Some parents believe we are doing our children a disservice by not embracing them entirely as they are, while others would go to great lengths to help their progeny shed their autism label. There are groups within the autism community who feel vaccines and/or environmental factors are to blame for their child’s disorder. Others are certain their family trees are replete with deeply organized, relatively anti-social individuals who were not stingy in passing down their DNA.

We’re all entitled to our beliefs, but the problem seems to lie both in how firmly entrenched we are within them, and our need to foist these beliefs on other families. Some of the discourse can get really nasty, reminiscent of some of the mean notes I saw passed in high school (yes, I’m old enough to have passed notes in high school). In my opinion, not all of these issues are so clearly defined, so patently black and white. There is room for enlightened discussion if we all just listen to one another.

Shades of gray my people, shades of gray.

I’ve checked out blogs written by mothers and fathers whose kids have other disabilities, such as Downs’ Syndrome, cerebral palsy, and Tourette syndrome. I am not discovering the vitriol, just sensing the support. Theirs seems to be a kinder, gentler world.

I know we all need to vent, and some of us are writing simply because we’re stuck in our homes. Clearly we have a lot to say, and much of it, despite its antagonistic nature, is thoughtful and illuminating. We parents of autistic children are, after all, not a dumb people.

There’s even a study to prove it.

This is all I’m saying. Many of us have embraced the theory of Applied Behavioral Analysis, whereby if we don’t like a behavior, we ignore it and engage in something else. Perhaps we can put a little more theory into practice. Maybe every minute we spend reprimanding each other we could spend a commensurate minute using a connection to get an adult with autism a job, sacrifice a few seconds to petition our state’s congressmen about insurance reform, or try to harass our director of special education to make certain our kids aren’t being instructed in classrooms the size of my walk-in closet.

Just think about it.

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18 Comments »

  1. jspd said,

    What a great post! We do all have to start somewhere.

  2. Katie Quimper said,

    Wow Kim! What a great blog! You are a fantastic writer and mother! I can’t wait to read more. I will tell my friends about your blog. It was great seeing you on your last visit to DC. I am looking forward to your future book. : ) Katie

    • Thanks Katie, any “passing on” I would appreciate (especially Michele and Molly, I don’t have their email addresses and keep forgetting to ask Karen). It was so great to see you in November, hope to be back down in a few months! Thanks for taking time to post, it really helps!

      Kim

  3. Kathy Milmore said,

    Hear, hear! So much more could be accomplished without the infighting. (I wish politicians in Washington could take that hint also!)

  4. Courtenay Adams said,

    Lots of going around in circles and spreading the poison does not help. It just makes everyone look bad and turns the important people –whose attention and help you need– off. It is wonderful that you are a voice of peace in the midst of the “kvetching.” Kumbaya, indeed!!!

  5. Cindy said,

    All excellent points. Just think of the “strength in numbers” there could be for progress if there was just a little more unity and respect.

  6. Elaine Stomber said,

    I’ve been wondering how the recent NJ cuts in school budgets is going to impact the quality of special education in our state…I’m worried about how these funding cuts will change the quality of education for special needs children like Justin and Zach. I try to be optimistic and can convince myself that my main-stream daughters will still manage to get the education they need from NJ public schools with one less librarian, nurse, class trip, or after school activity. But what’s the outlook for children in Special Ed. programs? It would be great to get your perspective on this, how about a new post?

    Congratulations on your blog! I used to think about autism every once in awhile, but since I’ve been reading your posts, it’s with me throughout the week. Keep up the good work!

    • It’s going to be very, very interesting, and will take some research, but that is a great blog idea. Glad to hear you’re thinking about autism, that’s part of what I’m trying to do. Thanks for taking the time to read and post, I appreciate it!

  7. misifusa said,

    I love how I continue to learn about so many things with your blogs…Keep up the great work?

  8. Loren McCue said,

    Hey Kim!!

    Sorry it took me so long to write! I think you’re writing is GREAT!! I love that I can keep up to date with Zach and Justin! Also, love the sense of humor you have when you describe your days, I know they are so very hectic, and I am impressed with your ability to deal and write this blog!! Hope you get to actually meet “Justin-ghost” soon!!! I love that Zach has an imaginary friend! Hope to talk to you soon! Look forward to reading more…

    Loren McCue

  9. Louise van der Meulen said,

    I thoroughly enjoy your blogs. I just watched Julie and Julia, and thought about you! Maybe you are ready for your second book….your life itself has enough material for a few books. Bianca also has her blog. She writes about her life in NYC by using poetry. I will see if I can find the link she sent me. Anyway, you are a wonderful writer! Love, Louise


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