October 9, 2012 by whirlyjoy
Whenever Aida performs her signature hand-flapping, where she holds her hands up on either side of her face and flicks her middle fingers out from under her thumbs in rapid synchronous movement, people who know she’s deaf but aren’t familiar with her ways invariably ask me: “What’s she saying? What does that sign mean?”
“Nothing,” I reply, “that’s just Aida doing her own thing.” Over the years, I’ve found this explanation to be the simplest shorthand answer to many a reaction or question about her. It’s always accurate – if there’s one definitive thing about Aida it’s that she’s very much into doing her own thing. It’s non-aggressive and easy to fall back on in stressful moments – so that, for example, the man at the mall whose paper coffee cup she picked up, gently sniffed at, and set down again, when he barks a startled “What’s wrong with her?” doesn’t get a nasty “She has autism, what’s your excuse?” in return. And it requires no further complex explanation if I’m not in the mood to give one – or if I’m not able to, since Aida’s quirks are frequently just as obscure to me as to everyone else.
Purposeful communication is a struggle for Aida, and her language skills have developed slowly over time. This is one of those “if you want to make God laugh, tell him your plans” situations: Opa had never spoken his native German to Eenie and me, growing up, not having foreseen the life of transatlantic moves we would eventually lead. We kids had to learn German much more painfully when we’d outgrown that fabulous window of elasticity our brains have for language in the first few years of life. Beginning at age 10, I studied with a Superman comic book in one hand (“Superman: Der Mann aus Stahl“) and a yellow vinyl Langenscheidt German-English dictionary in the other, so that my German vocabulary in those initial months tilted strongly towards mayhem and destruction.
When I have kids, I promised myself, as I leafed through the parchment-thin dictionary pages to learn that vernichten means to annihilate, I will raise them bilingually. They’ll have the freedom of movement around the world and the cultural openness and flexibility that an additional language can bring, without all the extra work I had to put in for it.
Aida was 20 months old when I finally managed to get her in to see an audiologist. I bypassed our pediatrician, who for several months had been dismissing my concerns about her delayed speech, increasing withdrawal and possible hearing difficulties. In May we had seen him for an appointment where I determinedly laid out my concerns a final time. I pushed Aida in her trendy, bright blue and yellow urban stroller the seven blocks to his office in the posh and family-oriented neighborhood of Paris we then lived in. “She’s still not talking,” I told him, and described how she’d stopped making eye contact, rarely looked up at the sound of her name, and spent hour after hour building the same tower of seven green rectangular blocks, knocking it down with the eighth block in the set, and then starting over again. Meanwhile, Aida ignored the two of us as well as every toy in the office and circled the edges of the room, opening drawers and cupboards and shutting them again, over and over. “Look at her exploring,” said this well-reputed French pediatrician, darling of the community of American mothers in Paris at that time, able to charge private rates above and beyond what the state medical system allows. “She’s much too bright to be deaf.”
I never doubted Aida’s intelligence, but this doctor was clearly an ignoramus. I began calling around to find someone who would actually test Aida’s hearing. And so, in the third week of June of that year, I watched a gruff French audiologist place an instrument briefly to each of Aida’s ears (while she sat and paid him no attention, as had become her baseline state), and announce to me “Madame, votre fille est sourde” – your daughter is deaf. The visit had taken all of ten minutes. I stopped in the restroom on the way out of his office to throw up – thinking it was a nervous reaction, not yet aware that I was simultaneously also just barely pregnant with Mimi.
Aida’s hearing impairment meant a shift from being a French-English bilingual family, to a family that uses signed and spoken language; and Aida herself, with the double whammy of the autism diagnosed a little more than a year later, has developed her limited language very slowly, beginning with a painstakingly taught “more” and then “help” around the time she turned five. When I look back at how far we’ve come, the amazement of it robs me of my breath – that we’ve made it to this point, that we’re still at it, that I’ve been able to stay on track without giving up (if you don’t count that exhausted moment every evening when I swear to myself I’m giving up).
Now, even with an expressive vocabulary of 100-plus words, most of my daughter’s interactions with the world are still “just Aida doing her own thing” – and a huge part of my job as her mother is to try to guess what the heck is going on inside that bright but screwy brain of hers.
Recently Aida and I consulted with a speech-language pathologist specialized in using assistive technology devices to help people with autism express themselves – like this app where the kids touch buttons on the screen and the iPad talks for them. I wanted to know why, even though Aida can easily read and type every word she uses fluently in sign language, she doesn’t naturally use these options to communicate with people who don’t know sign?
It turns out that from Aida’s quirky but very logical perspective, those poor people who can’t sign with her don’t have any language, so why should she waste her time trying to type things out for them?
This is what helping Aida communicate is all about: not just interpreting sign language between her and a hearing world, but building bridges between the world as she perceives it with her altered brain – and the world the rest of us experience.