Wednesday, April 1, 2015

THANKS, MOM/THANKS, SON!

This was written for the “I Don’t Need a Cure Autism Flash Blog.” 

For those who “tweet,” please use these hashtags throughout the day on 4/2:
#idontneedacure, #WAAD

Here is a true story that illustrates how I am trying to raise my son to accept himself just as he is, and to make his own choices about how he might want to grow as a person. I was particularly moved to join the “I Don’t Need a Cure” gang because of having used these very words to my son (before hearing about the blog) just a few weeks ago:

My son G and I were hiking up a local, kid-friendly mountain with the rest of the Full Spectrums -- my Pardner and Z, my daughter. I noticed G’s extremely rosy red cheeks and I knew he was feeling drained.

I remembered having those same red cheeks. I remembered how, as a child, everything seemed harder for me – not just the social stuff (!), but physical stuff like biking or running. I would get very red and work very hard when other people just coasted along or put in a reasonable (non-grueling, -agonizing) effort...

I would try to tell grown-ups how hard I was trying, but they thought I was lazy or out of shape. I had what I now know was low muscle tone, and sensory processing differences that made it super-challenging for me to follow team play. I know it NOW because MY normal course of development resulted in higher, more “normal” muscle tone later in life, and I am now able to see very clearly that I truly was experiencing challenges on a different level than others. I think I am generally a “fit” person now, though team sports have remained out of my purview (perhaps that can be attributed to a complete lack of interest on my part).

I know many activities feel harder to my son than they do to most. While my nine-year old daughter virtually runs up the mountain without breaking a sweat, my 13 year-old son is as red as a beet, even though his general levels of fitness and activity are basically the same.

Perhaps the hardest thing for me as a child was feeling misunderstood. I’ve always accepted difference, even (mostly) in myself, but I’ve never been able to learn to countenance injustice. So I wanted to validate G’s experience, and help him feel understood, in part by sharing with him how he is “sometimes a lot like me as a kid.”

I told him that “Everything was harder for me, when I used to go on family bike rides or runs, or when – this was the worst! – my family would make me join in soccer games.”

I remembered how agonizing those times were – how exhausted I would be, how misunderstood and alien I would feel because I didn’t enjoy the “enjoyable” activities my family shared, and because I felt like they judged me for how I felt, both physically and emotionally…

“I would get super red cheeks, just like you do! I was kinda soft, and floppier and ganglier than I am now. I got stronger and stronger as I grew up. I think you will too.

“Growing up is a process, and everybody does it in their own way. I suspect that for you, like for me, it’ll take a little bit longer for some parts of your brain and body to get in their best shape.”

I explained that my red cheeks and difficulty keeping up came from low muscle tone, a physical difference sometimes associated with neurological differences that made all my muscles have to work harder. I added that it was tough for me growing up neurodivergent in a way that I don’t think it is for him because the people around him and understand and completely, unconditionally accept him.

I thought about how watching my child encounter similar experiences in a very different context has been healing for me, and how grateful I am to be able to show him some aspects of life as a happy, healthy, self-accepting (all relative terms of course!) neurodiverse adult.

We walked a little further in silence.

“Thanks for giving me asperger’s and low tone, mom,” he said, sounding sarcastic and resigned.

I took a deep breath. “Buddy…don’t you like me? Because I like myself. And I like you too – a lot! It’s not that I want you to be just like me, you are absolutely your own person. But the things that make me a little bit different make me who I am and it’s the same for you. You’ll grow up at your own pace.”

“Of course I like you, Mom,” he replied. “But I want to be strong.”

“If that’s what YOU want, you’ll have to work hard to be strong, maybe harder than other people. But you’ll get there,” I assured him. “I promise. You can do anything you set your mind to!

“And once you do get strong, you will never forget how it felt to try that hard and succeed. You’ll always feel compassion for people who are having a hard time and accept and understand people who are different. Those are really good things!

“I like us both just the way we are. We can grow, when we want to. We don’t need to be cured.”

Love,
Full Spectrum Mama



14 comments:

  1. I try so hard to be nonjudgmental and to help my son accept who he is, but I had totally missed this aspect of his challenge. He, too, is the rosy-cheeked kid, asking how much further we have to hike while his sister bounds up the mountain, and more often than I care to admit, I have responded with frustration instead of understanding. Thank you for helping me see this differently. I am so moved by this insight. -mf

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    1. Darling mf,
      Something tells me you've still treated your guy with incredible and extraordinary love and respect. Now you can just add in the understanding on this particular item ;)
      I certainly know from my experience that parents instinctively tend to think kids who present like this are being lame...Glad to be able to share that this is not the case!
      Much love,
      FSM

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  2. Wow, ouch. You handled that so well but I'm sure it was hard.

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    1. Thank you so much. I hope you're right! It's so hard as you know to walk that fine line between acknowledging challenges (and the sometimes-inevitable reactions of the allistic-dominated/-designed world) and accepting/celebrating ourselves as we are...
      And let's not even get into teenagers...
      Love,
      FSM

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  3. I have Asperger's but I've never had low muscle tone, just poor coordination.

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    1. Of course we are all different!
      That being said I have been known to trip or fall from a standing still position, as has my son ;)
      Love,
      FSM

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  4. I just read your 4/1 blog and wrote, "I Love how willing you are to make yourself vulnerable in an attempt both to help others and encourage yourself to move forward one step at a time. Your greatness is breathtaking." Love, D

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    1. Um ...that's my "Dad" writing and I think he's a little biased...but I'll take the love and support where I can get it ;)
      Much love,
      FSM

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  5. Loved this, we celebrate differences here too!

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  6. Stephanie Allen CristApril 25, 2015 at 3:58 AM

    Two things came to mind:

    When I was a child, I was terrible at sports. Up to the age of 12, I played with the neighborhood kids just fine; but, "organize" anything and I was out. (It probably helped that my big brother was more than happy to readjust the thinking of any of the neighborhood kids who would rather laugh at me than with me, which didn't go over nearly as well in school.) One "sport" I did play was Allen Ball. We used one of those over-sized plastic bats and kickball ball to play something vaguely resembling baseball. It was nearly impossible to miss and there were only four players, so it was a much easier game for me to get into, regardless of whether I was any good at it. School sports was such that it was hard to enjoy it if you weren't any good, but because you never got much of a chance to play.

    My middle son, Alex, was a big low-tone kid in his younger days. Now, he's the most physically fit of all of my kids. Part of the way this came to be is that working out in the weight room (a benefit of middle school) became one of his sensory breaks. Now he has washboard abs and muscles in places I never knew you could have muscles--all of it quite toned. Not only is he physically fitter, but getting that way was its own reward for him.

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  7. @ Stephanie:
    Thanks for your comment.
    I wish I'd had both the older brother/enforcer and the option of "Allen Ball;" sans both I was a sports-disastrophe throughout school...
    Nice to hear about Alex. G is definitely interested in getting "big muscles." I might suggest weight room breaks for him!
    Love,
    FSM

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  8. Oh my goodness this almost made me cry...it was my story...and now my son and I have had a similar conversation!!!
    thanks for writing this!

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  9. @Kmarie - your blog makes me cry all the time - so there! Glad to be in tune. Much love, FSM

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