Dar has been up since 5, mostly tee-tee-tee-ing. That means he stops and starts, walking around the house saying “tee-tee-teeeeee.” Nowadays, he’ll find the iPad, unplug it from its charger, and watch Sesame Street videos for hours. I get up, change myself, change him. Half the time, he rebels against being changed like I’ve got pliers in his teeth. The other half, he laughs about it as though I’m tickling him, even if I’m not. I walk him to the car; he won’t get into the car seat unless I help him. He’s five years old. We drive. Dar is almost entirely quiet in the car, with the exception of a few “mmm-mmm”s or “tee-tee-tee”s. In this, he’s the opposite of his brother. If anything, he stims with the dangling seat belt – not the ones that came with his car seat, but one that came with the car, protruding out of the car behind his shoulder.
On the way to speech therapy, I often stop at a café, because coffee. Even when I get a perfect space with full visibility from the counter, I resist the temptation to leave Dar locked in the car for five minutes. Instead, I bring him in with me. Sometimes he will walk blithely behind the counter, and I have to gently walk him away, making awkward smiles at people. At other times, the people in line in front of me watch as this little brown-haired 5-year-old pushes ahead of them in line. Dar often touches the little snacks that the café sells near the register. Usually, he just likes the feel of the plastic wrapper. Sometimes, he will insist that I buy him a cookie. He does this by handing it to me and saying “ah-tah,” which is pretty much his term for “I want,” and then I respond with “What?” and if he’s lucky, he says “ka-ka.” If I hear that, and I haven’t yet ordered, I get him the cookie. I parcel it out to him in bites, every bite a separate request. Besides his need to work on communication, I do this because otherwise he will try to stuff the entire thing into his mouth all at once, which looks darn silly.
We arrive at Alta Bates’ Herrick campus, near the corner of Shattuck and Haste. I help Dar out of the car and hold his hand as we walk into the building. Walking with him, we look like something in the middle between a happy father-son outing and a Dad drrrrragggggging his kid somewhere. Dar is not planting his feet, but he tends to walk a little in back of me anyway, no matter how slow I go. At least he lets me hold his hand…usually. At Alta Bates, I ask him if he wants to take the elevator or the stairs (one flight). He never knows what I mean. If there’s no wait, we take the elevator.
If his therapist, DeeAnn, is late, that’s when Dar gets upset. He just screams in the hall. I sing songs and show him the hospital’s two children’s books. Sometimes works, sometimes not so much. Because it’s an 8am session, DeeAnn is often a few minutes late. Gives me time to sign us in, on the other side of the building, where people in wheelchairs look at us like we’re a six-wheeled tricycle that just rolled into town.
DeeAnn shows up and says “Hi Dar!” Dar usually says nothing, sometimes says “ah” – that’s as close as he gets to “hi.” Then they do exercises, after a fashion. If Dar is in a resistant mood, the only exercise is asking him to calm down. DeeAnn has a mirror on her wall that is about the size of a standard bathroom mirror, but mounted so that most of her kiddos can see themselves in it. On Dar’s bad days, he seems to be infuriated every time he sees his screaming reflection. On Dar’s good days, he laughs to see himself smiling. Kind of a chicken-and-egg thing. DeeAnn is used to this with her other kids, so she has a brown-paper cover that she uses to conceal the mirror when necessary.
So what do they do? She holds up cards and asks him to distinguish between the pictured items. Sometimes he connects quite well, sometimes we can’t tell if it’s a coincidence, sometimes he fails, sometimes he screams. If it’s going well, DeeAnn may put the cards on a table…Dar’s better at choosing between two cards held up in two hands than he is between two cards on a surface. She asks things like “who is this?” “where is that?” and tries to tease out answers…succeeding perhaps 2 out of 10 times.
DeeAnn demands that Dar “mand” for everything – in our world, that means he has to intelligibly ask for what he wants. Typically, Dar won’t proactively ask for anything – though he’s getting better at saying “all done” without prompting. (Mixed blessing, that.) So DeeAnn presents choices – balls or dolls, bubbles or food (fake food), that sort of thing. She asks him about the photos she has on the wall. He will stim with some item he’s brought in (say, an Iron Man doll), and she’ll turn that into an exercise…if he complies. She keeps a clipboard where she check-ticks expressive utterances and receptive understandings. Some days it fills up; some days it doesn’t. She ends by asking him if he wants a sticker; he never does. If she puts it on him, he pushes it off like an unwanted spider.
DeeAnn always wants to know what we’re doing at home and at school. I don’t mind that, exactly, but I wish we’d do it over email or text or something…we can get into these five-minute digressions, and I don’t feel that’s fair to the 50 minutes Dar sees her every week. We actually qualify for two such sessions per week (well, 100 a year), but owing to budget cuts everywhere, Alta Bates has trimmed its staff, which isn’t easy on us. We might comb the Bay Area for other places where we’d qualify, but without saying so directly, Dar has made it fairly clear to us that he is about at his limit, therapy-wise…that to push him any further might result in more backlashes.
Therapy ends, we walk back to the car, I drive him to school, we arrive around 9:05, I have to stop at the office to get a tardy slip (they can’t just have it ready every Wednesday), I get it, I bring Dar to class, I hand Dar and the slip to his aide, I say “bye-bye” to Dar and he says “bah-bah,” and Dar goes about his Wednesday school day.
DeeAnn is about to produce her annual report on Dar. DeeAnn had also been giving therapy to the kid of a friend of ours…until she recently dropped him, apparently saying something to the effect that she couldn’t do any more for him. This wasn’t a case of him “graduating”; this was a case where he wasn’t making enough progress to qualify. I suppose Dar somehow maintains a middle ground with her, not bad enough to be thrown out, not good enough to graduate…I honestly wonder how he does it. I barely see progress, but perhaps I’m too close to the situation. Well, perhaps I will look back on this blog post and say – hey remember how little hope there was then? WOW, things have improved. (Sigh.) Maybe.