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
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
ReplyDeleteDarling mf,
DeleteSomething 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
Wow, ouch. You handled that so well but I'm sure it was hard.
ReplyDeleteThank 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...
DeleteAnd let's not even get into teenagers...
Love,
FSM
I have Asperger's but I've never had low muscle tone, just poor coordination.
ReplyDeleteOf course we are all different!
DeleteThat being said I have been known to trip or fall from a standing still position, as has my son ;)
Love,
FSM
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
ReplyDeleteUm ...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 ;)
DeleteMuch love,
FSM
Loved this, we celebrate differences here too!
ReplyDeleteThanks + yay!
DeleteLove,
FSM
Two things came to mind:
ReplyDeleteWhen 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.
@ Stephanie:
ReplyDeleteThanks 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
Oh my goodness this almost made me cry...it was my story...and now my son and I have had a similar conversation!!!
ReplyDeletethanks for writing this!
@Kmarie - your blog makes me cry all the time - so there! Glad to be in tune. Much love, FSM
ReplyDelete