July 22, 2013 by whirlyjoy
Yesterday I loaded Aida in the car with all her luggage to take her to what I guess has now officially, three years in, become an annual camp session. Ever since her July calendar went up, Aida has been happily signing “camp” to us (or “camp tomorrow” which we correct to “in two weeks” or “next week” as appropriate, while we wait for her sense of time to settle into better detail), and looking through the photos that are loaded into her iPad from her two previous sessions at Camp Stand By Me.
The drive is about two hours, and I’d arranged to use the first part of it to catch up with a phone call to the friend I’ll call Ms Supreme Frozen Margarita – in honor of our several escapades in Las Vegas together when our children were younger and we didn’t care where we got together as long as there was room service and swimming pools with cocktails – so I dialed her number as we took off towards I-5, Aida making the car shake by bouncing heavily with excitement in the back seat.
“We’re on our way to the emergency room!” chirped Margarita into the phone when she answered: her daughter with the uncontrolled seizure disorder had just seized in the grocery store, which experience she described with good humor and relative serenity because, as all my friends with extra drama in their lives due to their “special” children agree – what else are you going to do? “I’m just glad the other two were already dropped off at camp for the week, so I can hang out at the hospital as long as she needs to be there without worrying about them at home alone.”
Once, over dinner at the Bellagio, we discussed the fear that always lurks behind the seizures. About balancing her daughter’s need for regular activities like swimming and scootering, with what might happen if a seizure hits at those times. That’s also when I learned about SUDEP and their friends’ children from epilepsy groups who had simply gone to bed at night and not woken up in the morning; and about how many years it was after their own diagnosis when their daughter was an infant, before Margarita was able to sleep through the night herself without being kept awake in terror of this happening to them.
Preparing and packing for a special needs camper is a little different from putting together Mimi’s bags for her overnight camp a couple of weeks ago. For one thing, Mimi basically packed for herself, and most people would be familiar with the items on the packing list, from flashlight and bible to sunscreen and bug spray. Also, while I had to sign the usual releases for Mimi that always come with a twinge of anxiety – determinedly quashed – about what all could happen to her there that might require emergency care or transport – this is nothing to the 20 pages of forms that need to be completed for Aida to be left in the care of people who don’t know her at all for five nights.
Aida’s camp session is for children in need of extensive support (up to a one-to-one counselor to camper ratio) – not just for autism, but for all kinds of conditions – and you can tell from the forms they’ve developed over the years that they know what they’re doing. Some section headings and a few of the check-box choices from the paperwork tell it all:
“- Feeding: G-tube? Liquids only? Preferred flavors/textures?…
– Toileting: Colostomy bag? Bladder incontinence? Bowel incontinence? Nighttime incontinence? Full or partial assistance? Toileting schedule?…
– Communication: To communicate, does your child use: sounds? gestures? a picture or symbol communication system? signs? spoken language? How, if at all, does your child indicate if they are in pain or discomfort?… ”
There’s also a whole section on “behaviors” – which I sometimes think of as the “watch out!” category. Watch out! She bites when frustrated. Watch out! She’s waiting for her chance to go over the side of the boat into the water. Watch out! She can locate an unmonitored bag of Doritos using, I swear to God, x-ray vision, and inhale it upon contact. Watch out! She shrieks in long stretches at banshee volume for no apparent reason, and nothing will stop her.
A few years ago we had a meeting at home with a team from the state Department of Developmental Disabilities about Aida’s behaviors and the level of supervision she needs. “Does she have awareness of basic safety in the street and around strangers?” was one of the questions they asked. Mimi was in the room reading her book while the rest of us talked, and I could see her slight eye-roll at this. “Well, if someone drove up in a van and offered her a cookie to climb inside, she wouldn’t hesitate for a second,” I replied, by way of example. There was a moment of quiet while the case worker wrote this down. “The kidnappers would sure get more than they bargained for, though,” Mimi added calmly from her corner.
When I first moved back to the US in ’01 I was a completely inexperienced driver – I had a license acquired a few years previously that I had literally never used. There were just a few routes I needed back then, to get Aida to speech and occupational therapy, or to Children’s Hospital for assessments. Opa bravely drove them with me on practice runs as I white-knuckled my way along in the right lane; it took many weeks before I would vary my routes an iota to, say, pick up a gallon of milk on the way home. And as I became more experienced and braver in my driving endeavors, I was comforted by learning that a wrong turn could almost always be caught up and corrected just a block or two later.
Not so out there beyond the comforting city grid, so I got off the phone call when it was time to leave the freeway and start figuring out routes on the local highways and roads. Outside the city, the distances between indicators always seem unnaturally long and I become easily convinced I’m lost – even, to be honest, when there was no conceivable place I could have got off-track because there have been no turns or cross-streets since the last step in the directions. Kind of a road agoraphobia condition that causes me to stop and check Google Maps frequently for reassurance. Watching for, you know, bears and gun-wielding red-county Republicans along the way.
Aida soon broke into my concentration by tapping me on the shoulder, so I found a spot to pull over and turned around to see her signed question: “camp boat today?” she asked, with an enthusiastic grin on her face (no doubt enhanced by her fond hope of escaping from said boat into the water).
On our first drive to camp, in 2011, things were very different. Opa had come along for the ride, to keep me company and hold off the wild animals. Aida was dubious at best when we left home for something called “camp” that she had no real concept to match up with – and as we drove further from the familiar urban landscape, her anxiety grew even greater than mine. “I haven’t seen a McDonald’s or a donut shop in forever,” I could picture her thinking, behind her deeply suspicious expression and furrowed brow. “Mom said swimming but I know we’ve left all the pools far behind.” About an hour in, she entered a full-blown meltdown of screaming and crying, biting herself, hitting her head with her hands and banging her arms against the inside of the car – which kept on unabated, if anything getting worse as all signs of civilization were left further behind, until we parked an hour later in the gravel lot at the head of the camp location.
For the next hour, my full attention was focused on ushering Aida from the car through the check-in process, talking to the counselors and nurses over the sound of her screams, grabbing hold of her arms when she tried to bite her hands in frustration, taking advantage of any slight lull in her hysteria to repeat to her that there would be swimming and snacks and dinner – all things she loved – at camp. Taking courage and hope from the fact that she would sign these things back to me, so I knew she was “hearing” me even through her continued state of meltdown.
Once the formalities were taken care of, one of Aida’s cabin counselors – completely unfazed by her behavior, like all the fabulous staff at this camp – came with us to show her the cabin. I was hoping that when we made her bed for her, she would find it calming – perhaps climbing under the fitted sheets like she does at home when she’s feeling unsettled. And I was right – whether she’d simply worn herself out with two good hours of hysteria, or truly felt a sense of comfort, she slipped under the covers and pulled them up to her chin, as is her way, clutching the little card we’d written telling her that dinner would be at 6:15, and swimming would be tomorrow. And I grabbed the moment of calm to blow her a goodbye kiss (you don’t move in close to Aida in her distraught moods) and take off.
I’d completely forgotten about Opa during all this drama. He faithfully accompanied us through everything, doing his part to keep Aida safe and carrying some of the many bags of her bedding, pull-ups, medications, etc. Finally, when Aida’s shrieks were no longer punctuating every moment and we walked from the cabin to the car for the drive back to the city, he turned to me, white as a sheet, and said: “How do you get through that? I didn’t think we’d be able to leave her there!”
In that moment I realized just how far I’d come on this parenting path, because through all the pain of hearing Aida in such distress, through all the very real worry about leaving my daughter, with her limited ability to communicate and extreme anxiety, with a group of complete strangers (out in the woods!) – never once had it occurred to me to simply back out and take her home again. Like Margarita’s daughter who needs to swim and horseback-ride and cycle despite the dangers posed by her condition, Aida needs to be given the chance to grow and experience as much of life as she can. Sometimes, with her autism, “giving her the chance” involves forcing/coaxing/cajoling/bribing her into new experiences, which almost always happen with less than the ideal amount of mental preparation – particularly viewed from a culture that now has children’s books along the lines of Everyone Poops to help our little ones overcome even their most basic anxieties about growing up.
But – what else are you going to do? The alternative is unthinkable. The alternative is giving up on truly living.
Of course, leaving Aida might have turned out very badly. I leave to your imagination the several and awful ways in which it might have spiraled into disaster – my imagination dwelt extensively on all of them over the hours and days following that drop-off.
What I did find when I picked her up was beyond my wildest imagining – a calm, happy Aida who hugged all her counselors goodbye, showed pride and pleasure when we looked at the photos from that week together – and now shakes the car violently as we drive to camp, not with meltdown anxiety but with eager anticipation.