Every week here at Waaaambulance Wednesday, often before I prepare the blog post for you kind readers, I awaken to a crystal clear reminder of Dar’s condition in the form of his weekly 8 a.m. speech therapy appointment with Dee. This week seemed particularly illustrative, even symbolic, of all of Dar’s hopes and challenges.
At 7:54, we arrive on the second floor and Dar pulls my hand to Dee’s door. This makes me happy: he knows where we’re going. I tell him to knock, but his light taps barely make a noise. I knock to no reply. Well, we’re five minutes early. Dar makes slight screams of frustration. I actually like that too; he wants to be in session! Knowing how quickly the frustration can escalate, I hurriedly redirect him to a walk. We go further than we ever have down the corridor, find a couch, find the string-bead thing that raises and lowers shades, and Dar is all set with a new stim. I take him back to Dee’s door at 8, but she’s late. Dar follows the maintenance lady, and I have to do my own maintenance that Dar doesn’t put her cleaning supplies in his mouth. Dee comes at 8:06.
In her office, Dar pulls on Dee’s hand, and she points to his iPad, saying, “use your talker.” Dar starts his program; in its main menu his hand hovers over “session” (which he uses for his daily home session). Then his hand moves to “session with Dee,” he presses it, and in the new menu he presses “people” and then “gummi bears.” I’m impressed. He knew how to manipulate the tree of options and go right to his favorite two things in Dee’s office, dolls and candy. As he sits and settles, she lets him have both.
Last week, Dee asked about books that he likes; when I mentioned Dr. Seuss, she pulled out “Green Eggs and Ham,” and we went through it, only for her to conclude that the book didn’t really have enough “real” things to help his vocabulary. Thus today I proudly presented a book that Dar likes that includes a lot more “real” things that Dar can use, for example a human body with indicated head, hand, arm, leg, etc. Dee looks at me skeptically: “but he already can point to those on himself.” I say “but it’s more of a work in progress on another person.” She says he doesn’t need that. Oh, my bad, then. I say, well, another thing he does well at home is choose the correct letter in a field of four. She shrugs.
Whistling what I consider a new or at least revived tune, Dee says that we need to focus on “practical” vocabulary for Dar, things that he can use in everyday life. Oh, okay, I say. She pulls out her picture cards. She puts pairs of cards in front of him. She says, “point to the computer.” He does. Two new cards. “Point to the shower.” He does. This continues with eight more pairs of cards. Dar is 10-0! I’m hella impressed. He finally fails on the 11th one, but this is Dar not knowing the difference between a door and a book, a lot harder with picture cards than it would be in real life. A few minutes later, she uses the same cards to ask him, “what is this?” He says “puh-tuh” for “potty.” He says “keee” for “keys.” He says “tuh-buh” for “toothbrush.” I’m impressed! His “TV” is terrible, just like it is at home, but she manages to fashion it with judicious use of gummi bears.
Dee runs out of gummi bears; I hand her $2 in cash, as is our drill. After Dar is frustrated by not receiving rewards for a few correct answers, he stands and screams. Dee puts the iPad in front of him again, and he chooses “take a walk,” as expected. They walk to the vending machine, they come back with more gummi bears, Dee gives me 25 cents of change. Dar is back in his chair. I wipe his nose with a tissue.
Now Dee wants Dar to demonstrate acuity with dolls and furniture. She wants him to ask each time he wants a new doll or blanket or table; she wants him to put the daddy in a chair. He isn’t so good at it, and he gets frustrated. He screams and smacks the table. After another failure, he hits his own iPad hard enough that I briefly worry that he may have cracked the screen. I say to Dee, “this is what they’re seeing in school.” Dar’s recent penchant for violence – some self-directed, some adult-directed – will be addressed in a future post. Frankly, we’re freaking out about it, but I want to see some work on it before I report back to you.
In session with Dee, Dar stands and cries. He paces, screaming. At first, Dee tries to get him to touch the “feelings” menu of the screen and choose “I feel” and then “sad.” Or at least “I feel” and then “frustrated.” When Dar gets that menu, he presses “I feel” and then “happy” because that’s his usual, and he’s trying to get the talker out of his face post haste. Since that doesn’t work, and Dar is still screaming, Dee decides to ignore him and chat me up. I say, “did you see anything start this? I always get asked about that.” Dee says, “My other kids that are like him, as soon as something isn’t working, as soon as they get something wrong, that can spin them off into a world of anger and frustration.” Right.
Dar never quite returns to the winning streak that he used to begin session. With enough ultra-easy questions and gummi bears, Dar whimpers his way back to some semblance of regular session. But we don’t get much more done. We wrap up with bubbles, an easy way for Dar to succeed, since “buh-buh” is something he’s never lost. Unlike so many other words.
So it’s a good news-bad news day, like most of them. Maybe we’re treading water. But the week before, Dee asked me to confirm that Dar has “mental retardation” – her words – and I demurred. I said truly that no doctor has diagnosed him with that – or anything else new – in years. Wifey and I discussed it later; the term “mentally retarded,” if applied to Dar, might disqualify him for services, so wifey gave me some specifics to say to Dee today. I wound up not using or needing any of them; Dee doesn’t seem predisposed to dropping him from her calendar. That’s the good news. The bad news is that Dar continues to desperately need her, us, everyone else in his life, as well as the kindness of strangers.