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We’re Not in Kansas Anymore

15

February 18, 2011 by Marj Hatzell

So. About that show.

You know, THAT show? I don’t know that I want people to come here by googling it so I’m gonna link to it instead.

Here’s my take (In case you were dying to know. And I know you are all dying to know. Otherwise, why would you be here? It’s edge-of-the-seat kind of stuff around here, yo.):

I got through twenty minutes of it. That’s right. Twenty. As in ten plus ten. Four times five. Twenty minutes. Why? Because this show could have been so much more. SO MUCH MORE.

Here’s what it was:

  • negative
  • gloom and doom
  • scary
  • parents sobbing on television about how awful their life is
  • dark
  • not an accurate representation of how many parents feel
  • more sensational and less informational
  • a town hall debate that turned into school yard arguments, finger-pointing and blame laying.
  • A showcase of people who were talking in circles
  • an example of why more research needs to be done (highways? Vaccines? Who cares. How do I help my kid?)

What it wasn’t:

  • informational to the point where it helped us gain understanding and acceptance
  • an accurate portrayal of what a kid with autism can be
  • a way to show the world that we aren’t all miserable and some of us are very proactive in helping our children
  • calming parents’ fears
  • a way to let the world know that autism isn’t a thing to be afraid of.
  • A way to show them that, while challenging, is a life worth living.

I am very disappointed. I had so many issues with it, just in the first few minutes. The sad, melancholy music. The weeping mother and father. The kid doing stereotypical behaviors and crying. Where were the hugs and kisses? Where were the laughs? Where were the kids like mine, jumping on the trampoline without a care in the world? THOSE KIDS EXIST.

I take issue that they said it was, “A parent’s worst nightmare.” Um. Hello? I don’t know about you, but my kid is ALIVE. A parent’s worst nightmare is a terminally ill or dead child, not autism. Autism is not a death sentence! Yet that promotion of fear in autism still exists. And it makes me sad. Because these kids are inherently amazing, exquisitely beautiful. And Dr. Oz (darn, now the googlers will get here) had an opportunity to show the world that our kids are misunderstood. They HAVE an “emotional foundation”, Dr. Oz. They CAN feel. They may not do it like everyone else, but our kids are very special. You totally missed the mark in the name of ratings.

I’m not here to gloss over anything. I’ve never, ever professed that this is an easy life. I never said it was sunshine and rainbows. But I’ll be darned if I’m going to have another ignorant, ill-educated person watch a show like that and react to it and treat us with pity. UGH. Don’t need it. We’re happy, thankyouverymuch. And we’re never bored.

/end rant.

 

15 thoughts on “We’re Not in Kansas Anymore

  1. Penbleth says:

    I suppose the thing with Autism is that it is a spectrum and therefore there are kids (and adults) on that spectrum with a wide variety of symptoms and behaviours. My child has ASD combined with epilepsy and severe language and learning delay and very challenging behavioural problems. No, I don’t want pity, yes, I’m never bored but am I ALWAYS happy. No. Sometimes there seems little hope, when your horizons are your own four walls because of behaviour. When your child won’t even sit in the car for more than a few minutes without creating a scene.

    A spectrum.

    A spectrum of people and a spectrum of symptoms and a spectrum of days.

    I say all this and I haven’t seen the programme, most because I’m not American and it isn’t (as far as I know) on in the UK. I hate when people sensationalise and when they only show one side of the story to fit their own agenda but I know I was upset when 12 was first diagnosed and it took some getting used to.

    Anyway, sorry, long comment, you don’t need to publish. I don’t even know what my point was, except there is more than one side to Autism, which was also your point.

    Lynn

    • Exactly my point, actually.

      And, so you know, my two kids couldn’t be more different. There are frequent, horrible meltdowns. There are behaviors. We fear for our younger son’s safety on a daily basis. And yet? It’s ok. We can live with it. It’s HARD. It really is. It’s challenging. I share the good, the bad and the ugly here. People know that and expect to see it. But darn it? Even with my son’s self-injurious behavior, even with him being non-verbal, even with his extreme behavior and his constant eloping? I want people to see the good stuff. I want them to see what a beautiful, amazing child his is. I want them to see what I see.

      And that’s precisely why I write here. So they can see what I see in him, instead of what the rest of the world sees.

  2. Penbleth says:

    Oh yes, they are amazing children.

  3. Krista Dougherty says:

    I did not see THAT show, I do not have a child with Autism, but I do LOVE reading your blog, because of the simple fact that you inspire me!

    I just have to tell you, that you are 100% right, your child is alive and well and even though your daily and long term struggles are different than everyone else’s it shouldn’t be taken as doom and gloom! I truely believe that it is EVERY parents job/role to make their child live to 100% of THEIR potential. Your boys are amazing because of you! You (and your husband) do everything you possibly can for your boys to make sure they have what they need. Every child on this earth should be so blessed to have such wonderful parents.

    And well that Doctor guy…he’s an IDIOT!

  4. Great post! And my sentiments exactly! (I think I wrote ‘life’s not all sunshine’ either – great minds, we are, thinking alike…)

    But you are absolutely right – autism is NOT a death sentence. it is not “woe is me, wah wah wah.” and do NOT feel sorry for me or for my kid.

    That show was such a missed opportunity…But I wrote to him too. And gave him the WTF 😉

  5. Amanda says:

    I didn’t see the show, but I get tired of all the focus on the doom and gloom. It’s the same kind of thing that irks me about the media glossing over military life as if it’s all sunshine and rainbows. Like you said, autism isn’t doom and gloom. There are happy, healthy, carefree kids.

    You know what my one wish is? That there would be more promotion of the fact that autism is a spectrum. When people who aren’t familiar with autism hear the word, they think of a nonverbal child most often in my experience. They’re often shocked that my kids (whom they think need nothing more than good discipline and less coddling) are also on the spectrum.

  6. And that is why I so rarely watch anything on tv about it…its all sensationalized BS. Plus, I don’t want to make our lives about it…its just something
    that rears its ugly head now and then…doesn’t really define my son. Granted, he’s got Aspergers, but it has gotten easier in many ways
    now that he is getting older. FINALLY. Fewer tantrums, etc…Dr. O kind of freaks me out anyway. I dont know what it is about him, but he’s creepy.

  7. punkymama says:

    Thank you for just putting things in such great perceptive. When I am down and full of a wacked perspective I always come here……….

  8. Anonymous says:

    Well, you got through more of it than I did! I intended to give it a fair trial (since I also find the Dr. a bit creepy) but five minutes of the doom and gloom was all I could take. Having just gone through testing with my son last Monday, I was shocked at how few of the parents I could relate to. A parent’s worst nightmare? Umm, no. Isn’t it worse to not know where and how and when your kid is coming from? I’m not suggesting that having a diagnosis and a course of action makes life all roses and rainbows, but as a dear friend posted on my own blog, “…a labeled child is a treated child. A cared for child. A loved child.” Isn’t that the goal? To learn as much as we can so we can help point our kiddos in the right direction? To cheer them on as they make steps ahead and to be a nearby hand to help them up when they trip and fall? Isn’t that what ALL parenting is supposed to be about?

    Gah. I’m all spun up again just thinking about the show.

    On a personal note, reading your blog has been critical to my sanity since it was first suggested that we get our son tested. There is way too much handwringing and whimpering information out there about life with kids on the spectrum. Having this as a window into your completely “normal” life helps keep all that other noise in check. Thank you!

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