When your kid gets a diagnosis like cerebral palsy or autism (or in my kid’s case, both), you get to know quite a few therapists. You might prefer to get to know two or three who would become surrogate aunts and uncles, but that isn’t our experience. That’s probably because 1) California’s state budget keeps getting slashed, so going into this career now is like starting tomorrow at Polaroid, leading to 2) wages aren’t terrific for this kind of work, and you’re usually paid hourly, and you often have to drive to the client’s (my) house, which is more tiresome than a Jason Statham movie marathon, 3) you may get frustrated that you don’t have more “aha!” moments with the kiddos. I hear ya loud and clear on #3.
Here are my impressions of Dar’s first few therapists. The stories you’re about to hear are true. The names have been changed to protect the insolent (me).
Marie – Dar’s first physical therapist was this reed-thin red-headed woman, perhaps in her 50s, who sounded very California-baked and liked to project that she knew everything about everything. Anytime I suggested that something was out of her experience she could barely contain herself correcting me. Her attitude toward Dar was very no-excuses, come-on-you-can-do-it. Which I liked a lot. I remember them playing with a lot of sizes of exercise balls and stepping up and stepping down little stairs. I recall a lot of mirror work and shoe work. The truth is that Marie was very good at her job, it’s just that Dar’s physical problems weren’t his biggest problems. I can’t quite forgive Marie for was telling me categorically that Dar did not have autism. This delayed us even trying to get the diagnosis for months.
Rebecca – Dar’s first occupational therapist, worked with Marie, about 20 years younger, very Jewish/knowledgeable/compassionate. Had nice thick brown curls – not unlike Dar. I remember a lot of eating. She would put him at a desk and force him to use his weak side – that’s his left side. He would scream and barely do it. (Dar’s CP isn’t all that severe, but his left hand is a bit like a limp Tyrannosaurus Rex’s.) Rebecca was very, very sweet and professional; I recall her saying “Oh I got this for Dar, it might help him.” Nice that she was thinking about him off time. She got pregnant and was wonderful enough to work right up until her birth; we liked her enough to work with her “substitute” for three months while we waited for her to return from maternity leave. But then…afterward…Rebecca quit the gig entirely. Not that the substitute was terrible, but we weren’t into going forward.
Sonia – I’m going to use Sonia’s real name because I have nothing but great things to say about her. We would go to her little studio, which was a small room with a massage table. She was certified, and a big believer, in Feldenkrais, which is more explained here: feldenkrais.com. Personally, I don’t believe in particular methods (e.g. bikram yoga), I believe in people, and I think Sonia would have been great with any set of techniques, but she certainly made Feldenkrais look outstanding. Basically, for fifty minutes, her hands almost never left Dar. Even as she “opened up” his arms and legs to receptive input – and receptive tickling – she would sing little songs and read little books (ok, little books are the only kind for 2-year-olds). Every moment was some sort of physical exertion that she was doing with Dar, right alongside him, and often with music. It was tremendous. It also wasn’t covered by our insurance, and though Sonia was generous with us and her rate, we eventually had to move on. The truth about all three of these people is that we might still be seeing them if DarMar’s CP was worse and if he didn’t have a more severe autism. As Marie said to me, in rehab, it’s hard to focus on more than one thing at a time.
Polly – One of the first therapists to come to our house, I truly believe she was too beautiful for the job. That sounds terrible, but her head wasn’t in it, and she was rather particular about way too many things. When she approached me about what I had to change in DarMar’s life, she had an odd attitude that combined fragility with a certain sense of entitlement. I can’t think of anything she really taught Dar; they just played with bubbles and blocks and books. I think she was the first arrangement that we ever really tried to get out of. She led to my theory that there’s an inverse relationship between quality of appearance and quality of therapist. Which was then disproven by…
L.L. – Her real initials, and known around the East Bay enough that she often came up in casual conversation about who could help us. (And, if you saw her photo on a dating website, you’d email her right away.) With all those recommendations, we plunked down $650 above and beyond our insurance (as a requirement for her to see Dar at all) for me to take classes in “The Hanen Program” with the group she runs at her office in Oakland. There I met other parents of other kids and we compared video of L.L. and our kids interacting. I probably did learn a useful thing or two from the “More Than Words” textbook – for example, ROCK (Repeat What You Say and Do, Offer Opportunities For Your Child to Take a Turn, Cue Your Child to Take His Turn, Keep it Fun! Keep it Going!), OWL (Observe, Wait and Listen), the four I’s (Include his interests, Intrude into his world, Imitate, and Interpret), etc. What I really got out of comparing Dar to other kids was thinking to myself silently, whoa, these kids may have an autism diagnosis (required to qualify for the program) but they say all kinds of things…quite unlike my little guy. I could barely, I can barely, apply these models to Dar because he wasn’t/isn’t interested in much and he imitates only through cajoling and rewards. My only beef with L.L. is that she eventually offloaded us to one of her employees, who didn’t quite match her energy level and enthusiasm. Frankly I don’t know how people like L.L. conjure it up every day – I guess they really love little kids, or maybe they believe in a world where people sound like “Free to Be You and Me,” or God knows. L.L. gave us some great exercises at home, like using the exercise ball at home and doing a lot of mirror work. And she did this thing where she would sing the “Jaws” song (not sure she even knew it that way, I think she called it “my shark song”) – “doo doo, DOO DOO” – as a warning that she was about to tickle Dar. I still use that! And it’s great, can’t imagine why I didn’t think of it sooner. The “doo doo” and my hands in a threatening claw like Jim Carrey’s in Liar Liar – still a great way to calm Dar down. For that alone I’m glad we met L.L.
Hannah – She had an NPR voice, meaning you had to strain to hear it, but the point of that tone is “let’s calm down and chat.” She was one of several therapists at this place near downtown Oakland that we qualified for shortly before Dar’s autism diagnosis; after the diagnosis, we qualified for more thorough and home-based therapy, so we left Hannah’s place after a few months. However, my memories of it are vivid, both because of Hannah and because it was the only parent-and-child-based place we’ve ever been. I’m often asked if I know other parents with kids on the spectrum, and yes, I do; this place was the crash course in meeting them. After an hour of play and various activities, the adults would meet for an hour of group therapy, and those were some of the goddamn craziest hours of my life. Obviously I can’t reveal specifics, but if you think you’ve seen a group of trauma victims, try a group of parents of 2-3 year-olds who are in the first year of dealing with the information that their kid has a lifelong debilitating condition. One mom was speculating about how to keep her daughter from being raped as a teenager. Another was talking about how every cent he earned would be needed to bribe future lower-level institutional workers to keep them from hurting his child. Another was talking about how badly she wanted a second child, but tears filled her eyes as she admitted her certainty that her husband would divorce her if the second kid was also special-needs. This was a space of heavy, ongoing mourning, “a club that nobody wants to join,” as one put it. And I shared many of my fears and dashed hopes with that group as well. And watching Dar in therapy with Hannah – as she very slowly, calmly told a small group of drooling, dim-eyed 2-year-olds to put on hats, to trade hats, to take off hats – a voice inside me said Have we been exiled to someplace Dante wrote about?
Anya – I’ll end this entry with someone who was fantastic, DarMar’s first consistent autism therapist who came to our house through Regional Center of the East Bay. She was like Marie in her won’t-take-no-for-an-answer-ness, but with much more down-to-earth-osity and dare I say it, a pleasant hippie vibe. I will call her the master of the redirect; the minute Dar would scream over something, she would just move it and put something else in its place. No nonsense, no tolerance for fuss, let’s just move on to another target, then. She gave Dar and us perhaps the greatest gift of Dar’s short life so far: thanks to her, when we say to Dar “Say ____” he knows we want him to say the word ____. He doesn’t always do it, but he always knows we want it, and he often tries. (His words usually sound like those of a sullen teenager, intoning the absolute minimum consonants and vowels, if those. Anya didn’t need to be taught to do “floor time”; she just automatically sat on the floor in Dar’s room and stayed at his level for 3 hours. Sometimes even 4 hours (depending on various levels of bureaucracy that I’m sparing you in this entry)! With her, he started looking at things we showed him, started looking when we said his name. Anya opened up Dar in a hundred ways; she unlocked him. Again, our only issue was saying goodbye; she decided to “retire” (she was probably 25), go backpacking in the southern hemisphere for six months, and then return to California and do something else. On one level I can’t blame these people for feeling burned out; they are giving much more to their job than, say, a character from Office Space. But we do miss Anya. And thank her every day.