Quiet Day (#216)
Of Neurodiversity, Bows and Lyres (#218)

Ache (#217)

Heartache is something we Autismland travelers are over-familiar with as we get through our days loving our children even as we bottle up a loss that can't be erased. I mean the loss of raising a child whose differences can be both our greatest sources of joy and also the font of our worst pain, fear, and terror. Mom-NOS in her sadly beautiful piece on Stealth Grief got me thinking about autism's losses and autism's gold; about the bittersweet of mothering and fathering our "spectrum children" in all their otherworldly cuteness.
Mom-NOS's eloquent words were salve to the other, much more mundane, ache I have been feeling since Saturday: The headache of congestion and the ache when you realize your body has been overtaken with some kind of flu. One thing about living in Autismland is that, because we parents--aka our children's teachers, caretakers, therapists, coaches, chauffeurs--are so busy taking care of our kids 24/7 and even in our dreams, that taking care of ourselves can pretty much go on the back burner.

"You take care of them first and then you collapse," a secretary sighed to me as I pulled out the Kleenex and coughed. She had told me how, when her teenage daughter had had major surgery, she spent every moment in the hospital with her, only getting sick at the end when she knew her daughter was going to be all right.

Last week: IEP meeting, knee replacement surgery for both of Charlie's grandparents (who are still in the hospital, for rehab), nightmares, a mysterious illness in Charlie, a doctor's visit. A typical crazy week in Autismland, in many ways, but--as Mom-NOS relates--the stealth grief, the ache, catch up to you.

Life with Charlie requires me to be on red alert 24/7, in health and in sickness--and this pose of constant readiness served me when, as I walked down the hall to teach this afternoon, I saw the chairperson of my department and another professor. "We're here to observe you," I was told.

Autismland is all about finding yourself at a high point and then at the bottom of a ditch and, it is true, teaching Charlie to talk is an infinitely harder task than explaining classical Greek participles to a class of college students. When Charlie was in the first year of his Lovaas ABA program in St. Paul in 1999-2000, I always did at least one session per week and learned the value of being motivating and reinforcing in teaching. My usual practise in teaching an admittedly dry, difficult, and rather boring subject like classical Greek grammar is to be--as our ABA and VB therapists are for Charlie--as Fun As Possible: Make stupid jokes about how the Greek "alpha" looks like a fish. Point out that the Greek word for "two," duo, is just like the two members of the Dynamic Duo (who, my students reminded me, are Batman and Robin). I almost forgot the ache in my throat.
An ache of another kind bedeviled Charlie. He has been making good progress on his programs at school, though he clearly tires in the afternoon. He started off his home ABA session in a silly and mischievous mood, had a sudden stomachache, and was oddly distracted afterwards (though doing especially good on the one program that he has been struggling with). Rummaging in the refrigerator, he found a container of Pillsbury frosting that I had stowed away. When Charlie was in his old school, I always kept a secret stash of gluten-free cupcakes and frosting around in the event of a birthday party. I ought to have thrown out the frosting but just never had.

"Ice cream. Spoon, barn bowl!" Charlie said, full of language. "Honey, you'll get sick if you eat too much. Mom should have thrown it away." "I want!" said Charlie and burst into tears.

Heartache times 100.

"You can have one scoop." "Scoop!" "With a spoon." "Scoop! I want scoop! Spoon, I want spoon, give!" I panicked: Should I left him have more---and get on a sugar high---and another stomachache, and maybe a headache----"One scoop." I put the frosting into the garbage and dumped the bag outside. Charlie sat in his chair, winsome and resigned. "White noodles. Ocean, I want swimming, yes!"

At the pool, Charlie jumped in on his own and did four laps, two with a swim noodle, two without. I stood poolside and gently encouraged him, all the while thinking about how I had long wondered if we could ever get to this point, when he swam and I--sort of like the other mothers--stood on the sidelines and, if not reading a magazine, watched in my street clothes. (I was wearing my swimsuit, just in case.)

"Ache" is etymologically related to a Proto-German word, *akanan. Around 1700, the word's spelling was changed to ache based on a false etymology with a classical Greek word, akhos, "pain, distress." In other words, the spelling of "ache" was changed so it would look more like something that seemed right, but is actually not correct.

I have to wonder: Does the heartache of autism ever cause me to change what I have to say about Charlie so that it looks like something more appropriate, more acceptable? To embroider the truth about Charlie--the truth about autism--so that what I write here is (as in the recent controversy about James Frey's A Million Little Pieces ) not so much memoir, but fiction?

I like to think, it is precisely because of the ache that autism always leaves in my stomach and has etched upon my heart, I can never say anything but the truth about Charlie here. Anything less, or more, would be the ultimate disservice to my boy and to all of our kids, whose untold stories are worth millions and millions, worth heartache, headaches, and the pride I felt tonight to be a mom on the sidelines, watching her boy swimming, all on his own, all aches forgotten.



I do not have the words to convey how much your posts mean to me. They are heartwrenchingly beautiful...It is your truth that is making the difference. Thank you for your honesty...


Your question: "Does the heartache of autism ever cause me to change what I have to say about Charlie so that it looks like something more appropriate, more acceptable?" is something I think about a lot. In the end, we all choose how to frame autism, both for ourselves and for others. I believe that our realities and the words we choose to describe them reflect each other. You have never glossed over the intrinsic heartache of autism but you focus most on the joy of raising Charlie and that is just as it should be. Through your words you influence how I have chosen to frame autism for myself and I'm sure the same is true for many who read here. And all of us, together, will influence how the wide world will frame autism so it is all for the good.


Wow, that is one achingly beautiful post you've written, dear Kristina. And there is so much in it that I'll not respond to all you've raised at once . . . Anyway, I'm too teary-eyed now!

I just want to ask you, and the other autism parents out there, how *do* you take care of yourself/selves in all of this? On the 24/7 Autismland schedule, where/when is there any time for you?

I hope you're feeling completely better . . .

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