support groups and Einstein

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Yesterday I went to a support group hosted at the boys’ school for parents of kids on the autistic spectrum. And afterwards I came home, and reached out to friends, in need of post-support-group support.

I’ve avoided support groups in the past. I’m not in any online autism-based communities…and often I fear talking to parents of autistic kids about autism. I’m convinced that I am too introverted, too analytical and WAY too sensitive for support groups. What one parent finds supportive, I find offensive. One parent’s therapy choices can make me feel like I am not doing enough. One’s parents decisions on diet can make me feel terrible for my cookies-that-do-have-gluten.

The thing about support groups, is that everyone is walking in raw. We feel a LOT of things about our kids’ diagnoses and as we each elbow in, seeking the kinds of support we need, we can end up stepping on each other’s toes. Often without even knowing it. I feel baffled by the support-group model. I know that they can be tremendous sources of support, but I don’t get it. How can a group with diverse backgrounds, and diverse perspectives and diverse support needs end up successfully supporting each other? I don’t think: it’s not possible. I’m honestly curious about how it CAN work.

Yesterday at the meeting we were all given a pamphlet to read. And at the end of the pamphlet was the line “who knows? your child may be the next Einstein or Mozart or Van Gogh! They were all autistic!” And I am SO tired of that line. I don’t find that rationale supportive AT ALL. I find it downright offensive. Three years ago when I was mailed paperwork with Isaac’s IQ score and ranking of “borderline mentally retarded” my world view completely changed. I had NO idea how much I valued intelligence before. I had NO idea how narrow my range of “successful life” outcomes actually was. I had no idea that I secretly harbored a prejudice against people that weren’t “smart”. But seeing that paperwork made me face down those things and do the slow and painful process of reworking my world view and make steps closer to what really is true. And what is true? It’s simple. What’s true is: Everyone matters. Everyone is important. A successful life isn’t about income or career achievements or intelligence or power. A successful life is about giving and receiving love. A successful life is about authenticity. And so when people tell me that maybe one of my boys will be the next Einstein, I feel like that is the autistic-kid version of the same false message our culture screams at piercing volumes. You are important IF. You are valuable WHEN. Your autistic kid can too achieve our culture’s narrow view of success! Don’t give up hope!

And it’s all just a load of hogwash.

MOST autistic kids don’t grow up to be Einstein. And I just want that to be okay. I want it to be okay if my kids don’t get shipped off to MIT and become record-breaking-nobel-laurete-winning scientists. I want a broader range of outcomes to be acceptable. I want it to be okay that my kids be exactly who they are. Even if it doesn’t meet our culture’s standard of success. When I hear the Einstein-line, I feel a sense of panic. I feel like “that’s your standard? we have to achieve THAT?” And it feels like an unfair-pigeon-holing.

But…at the same time, I get it. I know why people say the line. I know it’s attempt at encouragement and no one is trying to hurt me. AND I know that weird people CAN achieve amazing things. But, ultimately, it’s a source of support I am against.

But…not everyone is. Which brings me back to the support group.

In our bumbling attempts at sharing and supporting yesterday there were a lot of those tired lines getting thrown around. And I’m sure they were genuine sources of support for some of the parents. But I’m also sure that they were NOT sources of support for everyone. So then…how does this work? How can we support each other? I’m not sure…but I’m definitely interested in finding out. And so, I’ll be returning next month…maybe with my guard up a little higher…and I plan to watch and see what happens. And maybe, at some point, I’ll find a new, unlikely source of support.

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Yesterday we had a lovely snowstorm that called for chocolate chip cookies. And I had no choice but to answer the call. The cookies were still warm when the boys got home from school, which made for chocolate smeared smiles while they shared stories of their day. And it made me think that my two cookie munchers might not be the next Einstein or Mozart or Van Gogh, but I can’t help but love exactly who they are. :)


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About robyn

I stopped teaching Kindergarten in 2005 to become the mom of two crazy boys here in Brooklyn. At first I thought being a stay at home mom meant that I needed to pour all my time and energy directly into my sons, but I realized somewhere along the way that being a rockstar mom meant not only taking good care of my boys, but also taking good care of myself. And taking good care of myself means pursuing something creative...just about everyday. I started Made In Brooklyn to motivate myself in my creative goals as well as share my work with others and perhaps inspire them in their own creative journeys.
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9 Responses to support groups and Einstein

  1. Jen says:

    Perfectly said Robyn! I think some (most) people expect way too much out of our kids these days, whether their “normal” or “special.”

    And yes, yesterday (even here in Manitoba Canada) called for Chocolate Chip cookies, except that ours had peanut butter in them. And you may have to post your recipes. I’m always looking for another good cookie recipe.

    • Robyn says:

      It’s true, Jen! Too much is expected of typically developing kids too. Yesterday a friend was telling me something she read…a piece of Japanese wisdom, I think? And it said “give it 70%!” And we talked about how refreshing that was! And wise even. When things are all systems go, you’ll be giving it 70%…but don’t burn out entirely with that 100% business. :) So different than our American (and maybe Canadian too?) mindset of “Give it your all!” ha!

  2. Debs14 says:

    Robyn, I have a feeling that your part in this support group is going to be giving support to others rather than them supporting you! You seem to have exactly the right attitude and mind set. The spectrum is so wide, how can there be one answer to coping or managing or understanding the hows and whys. We all hope that our children will know how to love and respect and will receive those things back from others. No one knows what the future will bring for any child. Some things will take longer to learn than others, some skills may never be learnt but one thing I know for sure is that your boys have one of the strongest mums in the universe fighting their corner. I look at some of the things that you show Andrew doing and I am positive that he is far more advanced than the average kid his age in his science and engineering projects. I think he has already found his strengths!
    It must be tough though with both boys with the same diagnosis, and I know that some of the social niceties do not come easily to those who are autistic, and the temper/frustration tantrums can be far more overwhelming. My husband’s cousin’s son is autistic and he can be quite a handful (to put it mildly!) so how you manage with double that – well, I am full of admiration. And you still find time for cookie cooking – wow!

    • Terri Deal says:

      I know exactly how you feel! I too have issues with the way some try to make Autism sound AMAZING because your kid could be a genius. Yes a lot of kids on the spectrum are but MOST are not, not that they don’t have their own unique talents etc. My Caitlyn can hear in perfect pitch and plays piano by ear and can tell you if any instrument is out of tune BUT she is no Mozart and I don’t expect her to be. I found that here anyway most support groups ended up being a big gripe fest: griping about teachers, school systems, Drs, therapists etc. At that time I didn’t want or need to hear so much negativity. Our church does have quite a few kids either on the spectrum or with other issues such as ADHD, OCD, Anxiety etc so a group of us moms started a monthly “Moms of Special Kids” prayer group where we get together, talk about the good things our kids have accomplished and yes talk about their struggles. I learn so much from these get togethers, mainly that I am not alone in the tantrums or whatever is going on that I can sometimes feel no one else is going through this. AND the best part is we pray for our kids, our marriages and for our kids who are “typical”! My advice: find some moms who maybe feel more like you do and form your own type of support group! We also have 2 family get togethers a year so that the husbands and other siblings can just hang out in a fun relaxed atmosphere! Next time I’m in NY I sooooo want to meet!!

      • Robyn says:

        Terri that is so interesting about Caitlyn and music! And VERY interesting how your experiences with support groups turn into gripe fests! This one is held at the school and moderated by a social worker…so I’m hoping she is able to direct the group into a good groove…but only time will tell. ;) And I definitely have a pretty broad support system of friends and family…so it’s not like I *need* this group…it’s more like: it would be nice if it worked out. :)

    • Robyn says:

      Yeah, Deb. I agree. There are probably as many perspectives on autism as there are people it affects.

      Thanks for being supportive! :) I really appreciate it!

  3. karen says:

    I rarely comment on blogs but I have to share with you that I read your blog religiously. It’s because of posts like today’s–so emotional, so eloquent. I can feel the love you have for your boys through your words and it’s very touching. It keeps me coming back for more…and your cookies look awesome!

  4. Ruth says:

    I read this post and then had to come away from the PC for a while.
    Neither The Brainy One nor I are “ready” for a support group, despite numerous professionals suggesting otherwise. And in all honesty, I couldn’t think of anything more hideous.
    I’m always interested in “has autism” versus “is autistic” when listening to others describing The Boy Child. We describe him as having autism; a deliberate choice of phrase as he is so much more than the actual condition. It doesn’t define him. But I suppose each of us finds our own ways to describe our children. I also say that he has additional needs, as opposed to special needs because, to me, it infers that “typical” children are somehow less special.
    Some “typical” children are super brainy and may rival Einstein in the future; most will not. Some children with autism are super brainy and may rival Einstein in the future, most will not. In our case, I think The Boy Child is bright, but not in the super-league category (perhaps he’ll surprise me!)
    And now I’m waffling, so I’m going to stop.