July 31, 2013 by whirlyjoy
There’s this essay you’ve probably already come across if you’ve been involved in the world of disabilities for any length of time, called “Welcome to Holland.” If you haven’t seen it you should click here and go read it now – it’s very short, and powerful, written by the mother of a child with Down syndrome, and expresses admirable ideas that many find inspiring.
The basic outline is, when you’re planning for a child to be born it’s like planning a trip to Italy, but when your child is born with special needs, it’s like you get off the plane in Holland instead. Different language, different expectations – you feel lost at first and there’s a lot to learn. “But…,” the writer concludes, “if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.”
I first heard this essay at my very earliest autism support group meeting at Aida’s very first preschool. The social worker who was running the meeting read it aloud to our little group of shell-shocked parents. My own reaction to it was perfectly manifested by the mother who was sitting next to me, when she gripped my arm at the end of the reading and said: “Autism isn’t Holland! Autism is f***ing Beirut!”
(I heard or read somewhere years later about an identical response, word for word, from another autism parent in another place entirely, being subjected to the same uplifting story. Apparently the war zone parallel comes easily to those of us here on Battleground Autism.)
With Aida now almost 15, I have years of battleground experience. I would hesitate to say “victories” – progress is halting, uncertain, often backtracks, and is sometimes hard to even identify (when she learns to ask her questions using more and more specific words, but with the same obsessive-compulsive drive and frustration when the replies aren’t to her liking – well, there’s progress in there somewhere I know, but it doesn’t always feel like we’ve come very far…). Still, there are always moments that feel like something to celebrate. And sometimes things do feel a little more like Holland to me – even though I know Darfur is mostly lurking just around the corner.
Here’s what was surreal about waiting for our turn with the nurse at summer camp check-in this year: Aida was calm and composed and quiet. Oh, a few little stimmy moves here and there – in the photo you see her poking her chin with her pointer finger, one of her newer exploratory sensory habits, and doesn’t it create a very Normal overall impression?
[Note to any who might bristle at my normative use of Normal: please spare me any politically correct critiques and other well-meant uselessness. Normal means what it means – what we expect to see, what doesn’t shock us or cause a double-take – and I wield it freely in this way.
And in another plank to this sidebar: I personally would never in a million years have thought that I would want to help one of my children target “Normal” for her life, instead of fostering as much creative difference and freedom as possible in her thinking and choices. I have strong and slightly embarrassed recall of a journal entry written in the throes of pregnancy hormones, pontificating about how I would protect my soon-to-be-born baby from all the pressures to conform in this society of sheep and money-worshipers. Or some such equally original notion.
“First-world problem, Mom!” Mimi would call me out. In her case I have no idea if I’m succeeding at the whole fostering free-thinking thing or not – she and her mini-teen friends speak a jargon I can barely understand that may or may not be a vehicle for creativity; all I know is communicating with her can sometimes be as baffling as our cryptic sign-language efforts with Aida – evidence that learning Italian can be just as hard as deciphering Dutch.]
While we sat in our chairs waiting, Aida tapped me regularly to get my attention and ask me what time dinner was, and what she would be having? “I don’t know,” I signed to her over and over, “we can ask your counselor when we’re done checking in.” I finally dug a slip of paper out of my bag and wrote down this same information for her: “MOM DOES NOT KNOW WHAT IS FOR DINNER AT CAMP. MOM DOES NOT KNOW WHAT TIME DINNER IS AT CAMP.”
Our behavior specialist has given us this technique to prevent Aida from perseverating on the same questions over and over. “You write the information she wants on a card, and then just keep showing her the card instead of re-engaging in her questions!” she explained, with the kind of perky confidence in the success of these tools I’ve found to be the norm for behavior therapists everywhere. I figure they’d be less perky if they understood how rarely I’m able to be organized enough to have cards and pens in my bag – along with the spare cochlear implant batteries, sensory toys and chewies, healthy non-obsessive snacks and other necessaries of daily getting around.
Also, if the information you’re giving Aida is not in fact the information she wants, the technique is less effective. She took the paper from me. I saw her eyes scan the text and her mouth purse up in disgust, and then she tossed it onto the floor without a second glance.
Another of the teens waiting in our little corner was paying attention, though. He’d been watching Aida from his seat kneeling on the floor, a yard or so away, since we arrived. He was a slim, freckled boy with a mop of red hair, hugging a nippled green sensory ball snugly to his chest, occasionally lifting it to his mouth with an almost invisible flicking movement for a quick bit of pressure to his lips, before dropping it back down and holding it tightly again. When Aida tossed the bit of paper with my note on it, he took that in without moving at first; then slowly rocked his whole body forward, held otherwise completely immobile around the green ball, to bring his nose close to the paper. He may just as well have been trying to smell it as trying to read it – such is the world of sensory quirks. Then he rocked back into his kneeling position and fixed his eyes on Aida once again.
There’s been a certain amount of talk on our home behavior team about Aida’s “chewie” toys, and how to wean her from their frequent use. This is not one of my goals, currently – we hand her a chewie when she is otherwise chomping down firmly on the back of her hands, or gnawing at her knuckles until she draws blood, and to me the plastic toys are a definite step up – although I wish we could come up with a name that sounded less like a dog’s plaything. One brand has cleverly coined “chewelry,” but saying that is just too much of a mouthful; and besides, even though you can wear models such as those pictured here on your wrist or around your neck, let’s face it – once a long end of the plastic is being worked over inside your child’s mouth, with drool escaping to dribble down the coil and their chin, any fashion statement becomes lost in the overall look. To quote a friend of mine: “Nothing says ‘special needs’ like a chewie.”
Anyway, Aida is rather fastidious about her chewies and would never keep one on her body once it’s wet with her saliva. Instead she hands the dripping item to me or whoever her companion of the moment is, before wiping her hand off on her shirt with a slightly disgusted expression.
Aida is not one to go up to strangers and peer at them, but I know many kids on the spectrum who do, and we received a number of visitors to the corner where we were seated for that 20-minute stretch. More often than not, this visitor would be worrying at a chewie in some form or another, which put me right at ease. One girl was entirely representative in her approach – she came up close and looked at Aida (purple object extending from her mouth and moving rhythmically as she masticated), turned to me and put her face right up into mine, stopped chewing for a moment and gazed at me somberly in response to my “hi” and smile, and then wandered off again along the edges of the room.
More intense interaction can also happen, of course. One boy (blue chewie, and a Tigger doll being held by the tail in one hand) took the chair next to Aida’s, reached his free hand over, grabbed her forearm and began squeezing. I could see his knuckles whiten and the veins standing out on the back of his hand, even though you would never have guessed from Aida’s non-reaction that the pressure might be painful to her. (“How, if at all, does your child indicate if they are in pain or discomfort?”) I overcame my immediate instinct to try to wrench his hand free and extricate my daughter, since I knew what a losing proposition that could be – instead looking around for someone in charge of him to deal with the situation. Two camp counselors were there immediately, working together to coax him off and walk him away – he grabbed at her one more time as they moved past, but was soon ensconced between his two minders and being shuttled along to another activity.
What motivates this kind of behavior? Aida generally doesn’t stare in strangers’ faces, or clamp herself onto them. Her moves involve poking a finger into someone’s dimples as she walks past, or rubbing her palm along an exposed upper arm or – her favorite when she can reach one – a bald head. I used to believe she did these things out of pure sensory delight – and there’s no doubt that’s part of what she experiences. There’s also no doubt that she’s pretty oblivious to how the people at the receiving end of her attentions will respond.
But as she gets older and I see more of how she interacts with the world, and observe other kids on the spectrum with her, I’ve become convinced these pokes and caresses are also, for her, a connection initiated with another person on terms she can handle. Much like the red-headed boy sniffing her jettisoned note, the purple-chewie girl staring, the boy clenched to Tigger on one side and Aida on the other. These are all bits and pieces of the very strange language spoken in Holland.