Hanging On

A few weeks ago, I drove out to Audrey's school to spend a few hours observing her there. This used to be a regular activity in my week, right up into her third grade year or so. I would watch how she was doing in the classroom, watch her teacher and other professionals interacting with her, and then compose my impressions ("Why the hell don't you have closed captioning on the videos being shown to deaf children? Duh!") into constructive suggestions ("I think the students would benefit from closed captioning; I know it would support Audrey's language learning.")

Over the years, I have found my school visits very stressful, but necessary. It was I who discovered, for example, that when they finally provided her with an FM system (a device that transmits the teacher's voice directly to her cochlear implant, to overcome the problems caused by the minor background noise of a preschool classroom), classroom staff was "using" it for weeks without having been told that it needed batteries.

Audrey can't tell me about her school day - not a single thing about it at all. So I need to be aware of what her days are like, what she is learning, and who she is with. I need to see that the people assigned to work with her are motivated and compassionate, and I need to know when anyone is hostile towards her, or incompetent. I need to see what is working for her in class, how and what she is learning. And mostly, I need to know that she is happy.

What's stressful about visiting school is not seeing and tallying up everything I think the staff could be doing differently - though I suspect this is how I have been perceived at times. It is that I cannot watch Audrey without being viscerally drawn into what she is experiencing and feeling. It's the bond you form with your infant, that helps you sense whether she is happy or hungry or uncomfortable or sick or tired - that intense "tuned-in" state of mind that wakes us at the first cry - and that tapers off as our kids grow older, and we start to interact with them in other ways. We watch them grow more independent and know that they don't need us there all the time.

For Margaux, I can look back and see some places where that bond was loosening: the first time she told me in words that she felt yucky (a few minutes before throwing up all over me); the day I dropped her at preschool and she said "Goodbye mommy!" without a second glance; the morning she hoisted her backpack and set off to walk to school by herself for the first time.

There has been no slackening of the bond with Audrey. There can be none, because she still needs me in those same ways she did as an infant - to know what is wrong with her when she has no words to tell me - and to know what is right and good for her, when she can't tell me and may not even know it for herself.

Lately, I've been exhausted. More exhausted than usual. More exhausted, in some ways, than during the five years that Audrey hardly ever slept through the night, and I was going zombie-like through my days, numb to most feelings whether of grief or elation, just trying to keep us all safe and fed and healthy. (And by "us all" I mean my girls; the question of my health and safety is pretty much reduced to "can I be there for them when they need me?")

I think this this bond with Audrey is stretching me thin. So thin it's like I can't find my own substance anymore, and just flap back and forth in the wind when I'm released for a few hours to my own devices.

It can't be sustained forever. I've only just begun admitting that to myself - and so far the admission ends right there, because what is the alternative? Who else will take this on, if I can't do it anymore?

And how can I love her, and not carry her through? What does that love look like?

Saying Please

There were only five of us at Audrey's team meeting today. The topic was AAC, which might stand for Augmentative Alternative Communication, or maybe Assisted Adaptive Communication, or perhaps a different mix of those A-words. You'd think I'd remember after more than six months of exposure, but I'm willing to swear I've heard all of these versions used by the experts.

I always take two Advil in the car, before heading in to the school. This is one of my best survival strategies for IEP meetings. Team discussions have often been contentious (to say the least), when I have to push and prod and pummel to get the school to provide the things Audrey needs (and is supposed to get, by law). A family advocate once told me it's a good idea to bring donuts or some other nice snack for all the teachers and other team members, to soften them up and create a pleasant atmosphere; but I've found that nothing beats a good, solid Advil base going in, to help me make sure things move in the right direction and I make it out in one piece.

Today we had Audrey's deaf ed classroom teacher, her Speech Language Pathologist, a district "AAC tech" expert, myself, and the vice principal of her school, who has to be there to sign off on anything that might cost money. Her individual aide and her OT were both out with the flu, which is why our ranks were so thin.

Since last May we've been meeting to assess what kind of AAC device could benefit Audrey. Right now she uses a little bit of sign language to tell us her wants, usually one word, sometimes two or three words together: "Car cookie restaurant", if she's not happy with the cookie in the cupboard at home, for example.

She can type lots of words, too, though she doesn't use that for communication yet; that's just her own personal thrilling exploration of how letters can get put together to make words, and the words are the same as the signs she already knows, and also they pattern in fascinating ways. "Bug bus," she will type, over and over. "Car cat coat boat."

So, here's the thing: We sit around, perched ridiculously (and painfully) on the little elementary school chairs, looking at all these devices that maybe she could learn to use. The reps from the companies who make them came out to some of the meetings, and showed us touch screens with obscure symbols and color coded buttons, and how, if you just tap-tap-tap like this it makes a sentence on the screen and you tap again and it talks. And really, the voices don't sound all fuzzy or mechanical nowadays, we could pick a girl's voice that maybe would be what Audrey's voice would have sounded like, if she'd ever spoken.

I have pictured Audrey learning to harness the amazing power of one of these devices, the power to speak. I've imagined her walking up to the counter in McDonald's and ordering her own "six McNugget happy meal please" (because, we can give her a polite veneer by programming that "please" at the end; and maybe it will help people overlook that she is compulsively licking the palms of her hands all the time, or flapping her hands and shrieking). Or at Starbucks, she could ask on her own for her all-time favorite "water with no ice in a grande paper cup. Please."

But I never got to the thing. Here's the thing: Can she learn this? Because, if she can't, or won't, we could pour years of effort into it, for no good reason. Effort that would be better spent on other things.

Just keeping the batteries charged and the device unharmed will require lots of work. I know this for a fact because I already do this with her cochlear implant, her FM system, and the AlphaSmart she types on. In fact, this is the single biggest reason that I never manage to have a camera on hand with charged batteries and space for new photos, no matter how important and irretrievable the event. I cling fondly to the belief that I would absolutely be creating photographic memories for my girls, if all my tech device recharging energies were not directed towards Audrey's special stuff.

"What would Audrey be trying to communicate, if she had more communication to use?" asked the district AAC tech guy (who seems to have some combined degree in linguistics and computer programming and to be just as removed from real-world possibilities as you'd expect from that blend).

And that is the thing once again, writ large: What is Audrey thinking? What goes on inside her head, that she can't get out to share with us?

In my life, this is one of the Great Mysteries, one I am compelled to ponder over and over again. It's right up there with the same Great Mystery question I ask of God, over and over: What were you thinking? I mean, really, what were you thinking?

And can't I change your mind?

"Please?"

Beyond Special

I tried a new activity for Audrey tonight. It is offered by the Parks and Rec "Special Programs" department. The brochure says: "It's time to burn off some energy!" They meet in a school gym, so I got very excited for Audrey about all the climbing, jumping, swinging and bouncing she'd be able to do - the physical stuff she loves at the playgrounds all summer, and sorely misses (and we for her) when the cold rains set in.

Audrey is too Special even for the Special Programs, of course. I know this, and knew I'd need to send her to the "free" evening with her $18-an-hour sitter, because no matter how inclusive people want to be, they are never inclusive enough for one-on-one supervision (plus sign language). I explained to the program manager that Audrey doesn't enjoy organized games, peer interactions, or circle activities, but would love the activities available in a gym if they were okay with her doing her own thing. She seemed to understand, on the phone.

So I duly filled out the four full pages of medical information - that the team doesn't even need, because Audrey is going with our sitter, but they require it for their files anyway - and headed over there tonight for our first session.

The gym is in an older school, with great murals everywhere and those bathrooms with the half-high stalls that leave little girls exposed to any adult who pokes their head through the doorway. Cheerful but shabby. One placid little girl with, it looks like, Downs syndrome, was rolling a ball back and forth with a counselor when I walked in.

I was excited to see a rock climbing wall, plus wooden and rope ladders along another stretch. "Audrey will love that!" I told the manager. "Oh, we can't use those," she replied. "They belong to the school." Uh oh. I got a familiar sinking feeling. Audrey was stuck in traffic with her sitter, but on her way - and I knew her first go-to when she got to the gym would be those climbing walls - and that the whole hour and a half could be taken up with blocking her from determined efforts to get up them. Or at least, the 20 minutes she'd keep trying before melting down and having to leave.

"She's really going to want to climb," I said.

"It's okay. I usually explain to the kids who want to climb that those toys don't belong to me, so we need to play with these toys." She pointed to a meager pile of balls, traffic cones and a hoop or two.

I had a brief hope that she was joking - but her serious expression doused that immediately.

No, it's NOT okay. Enough, already! Why, with a supposed epidemic of autism, are the special needs of severely autistic kids still almost completely unrecognized, even in programs that are supposed to be totally inclusive?! Damn it, you don't put a child with autism who loves to climb and jump and roam, in a gym where all the equipment for these activities is off limits! Blocked off with cute little handwritten signs. Ha!

All the other kids who showed up were apparently okay with the limits. They are the gentle, compliant type of "special" kids that the special programs like to get. A couple of walkers, a wheelchair (that Audrey tried to confiscate when she saw it because it was, frankly, the most exciting prop in the room without a "do not climb" sign taped to it); slow, plodding, sweet children who apparently believed an obstacle course made of traffic cones and a low balance beam is fun.

Audrey did sit in the middle of the balance beam and bounced for awhile - the most inclusive thing she tried, I'm very proud of her for it! Instead of making Audrey part of the obstacle course, I am told, which probably would have added to the excitement for everyone involved, all those sweet kids waited while aides tried to convince her to move out of the way. The mountain and Mohammed, I want to tell them. Figure it out!

***

If you're looking for a politically correct or inspiring account of living with adversity and loving my "special" angel, you're in the wrong blog. That stuff might seep out sometimes, but this is where I plan to be raw and angry when I need to, and not paper over all the hurting with platitudes.