Autism Hearts Club (#230)
With February 14th on the horizon, some of my students were lamenting their “unattached” state last week. We were working our way through the Roman orator Cicero’s first speech against Lucius Catiline which–while an intricately crafted piece of Latin writing–can be dryer than the dryest toast. All of the students in this class are women and when mention was made of Valentine’s Day, the sighing started.
“I’ll be with my friends and we’re going to eat fried chicken and LOTS of chocolate and…..” one student announced.
“And a movie. Just not Sleepless in Seattle,” said another, slumping in her desk. “That would be rubbing it in too much.”
When was the time, that–the romance thing–was the cause of heartache and world-weariness? I’m happily married these ten years and mother of a lovely boy. I have a job I love. And I answer the question I so hated three years ago–”so what grade is your son in?”–without my heart racing, or any subdued anger.
“Charlie has autism. He goes to a private school, and he loves it, and he’s doing really well.”
All of those statements are true and the three of us have a good life. And yet.
There are those obvious and hidden costs of autism. There are autism’s weighty gifts, like Charlie’s deep love of the ocean and his terror at going back because he knows we’ll have eventually to leave.
Boyfriend-less college freshmen can use Valentine’s Day to indulge their sorrows in fried food and chocolate and companionship, and perhaps we autism parents and autism families need an Autism Hearts Club.
“Bittersweet” is a word that often sums up life with autism for me; the word encapsulates what I feel when I say “my son has autism.” And this is not to imply anything about autism as a “nightmare” or something we strive to “defeat” or to “cure” or to “rescue” or “recover” Charlie from. It is seeing your child hurting himself because he was not born withthe neurological make-up to talk as easily as many of us. It is the stare of some six-year-old girl and the too-quick whisper of her mother.
“Bittersweet” is glukupikron in ancient Greek, gluku being “sweet” and pikron “bitter.” That’s the word the Greek poet Sappho used to describe eros, love:
Eros once again limb-loosener [lusimelês] whirls me
sweetbitter, impossible to fight off, creature stealing up [trans. Anne Carson, LP, fr. 130]
Sappho is talking about love of the Valentine Day’s kind but, to me, her words apply equally to life in Autismland. What is my lovely boy Charlie but my heart’s delight, “creature stealing up” onto my back or, as very often today, into Jim’s lap?
In the face of the pure and true love of Charlie, even the Snow Queen’s limbs would loosen, and–what with the Nor’easter that dumped record snowfall up and down the East Coast this weekend–we awoke to a kingdom of two-feet-plus of snow this morning.
On such days Charlie is prone to cabin fever and there was a stretch of sorrowful, sorrow-filled crying this afternoon. But he was absolutely the peaceful easy-feeling boy all day. He woke chattering happily and asked for “cereal! rice milk! barn bowl, spoon!”—and sat, laughing, crunching away. He sat with me to do the first Edmark pre-reading lesson on his computer. He pulled on three layers and his snow boots and helped take a few swipes at the snow pile on the green and black cars as Jim shoveled. He called out “comm-pu-terrr!” with a huge grin and checked out some more reading exercises at Starfall. He talked to his grandfather on the phone and looked big-eyed at Jim and at me to pronounce his words right: “I waNNTT green apple. SSNNNNow.” Throughout the day, he kept running over to give Jim hugs and to sprawl in his lap. After snuggling up in his blanket near Jim’s desk, Charlie headed upstairs at my mention of “bedtime,” jumped on the big blue pillow in his therapy room and was asleep by 9pm.
Such an absolutely lovely boy is “impossible to fight off” and I’m thinking that I don’t need chocolate or champagne, or roses or diamonds, to indulge myself or assuage any ache in heart or mind or soul. An absolutely lovely day with Charlie is our deepest pleasure, our purest joy–why we do what we do–and well worth the stiff entrance fee we paid (not to mention the often pricey monthly dues) for membership in the Autism Hearts Club.
“It is the stare of some six-year-old girl and the too-quick whisper of her mother.”
What is the most polite way for the parent of the other child to handle this? I ask because I sincerely don’t know. I don’t like the whisper because it makes something shameful of Charlie, which he is not.
Would it be better for the other parents simply to ask you? Or to say outloud to her daughter “He has autism”. If she doesn’t know, would it be very insulting if she said “He is retarded” ?
These are issues I haven’t had to puzzle through, and I wondered if you had a preferred way of handling this sort of situation. I realize that you don’t speak for everybody; still you’d have a better sense of what might work than I would.
Kristina, that was so lovely…thank you for this post.
“What is the most polite way for the parent of the other child to handle this?” I can’t answer for Kristina, only myself. I would tell the child to ask the parent of the disabled child. Labeling a child retarded only objectifies the disabled child. I would be happy to explain my child’s disability and also his ability, since they go hand in hand.
Happy Valentines Day…one mom’s hug to another…
(Hubby is away so I get to spend a night alone with my other true love).
Cheers,
Estee
I want to clarify something – I’m not suggesting that “retarded” is acceptable. However, I suspect it’s what parents whisper to their children, both because of a parents lack of information and because of kids’ limited comprehension.
Agreed that one doesn’t want to objectify any child, and that one shouldn’t reduce a child to what they cannot (or can) do.
I’m just trying to figure if there is a short and elegant way to have this discussion – something like “Meat in a Box.” I’m not privy to the discourse that autistic parents use, so I wouldn’t know what that would be. For example, Kristina, if you were out without Charlie and wanted to approach a parent whose child was different in some way that you couldn’t identify, what might you say?
Again, sorry if I caused insult earlier.
Ennis: Your 1st comment has given me some much to think about and I’ll try respond in my next post. And, no insult about the mention of “retarded”—the word still exists in our vocabulary and I am sure on the playground, and must be dealt with.
In reponse to your 2nd question, I think I would try to make eye contact with that parent, send a smile their way, and say something about their child not specifically about the child’s perceived different—”How old is he?” “What a big guy!”–
Thank you again—–kc
Thanks for this post Kristina! You’ve put it beautifully (again!). Made me smile and tear up at the same time. Happy Valentine’s Day!
Ah yes! I so remember the grave laments of lovelessness long ago . . . you say it so well! From one member of the AHC to another, Happy V-day, for valentines and the victories we have every day!