2 July 2001
So yes, my hands were shaking, but I kept my voice calm and matter of fact. I got the guy’s name. I wrote it down. I asked why our request had been denied. He looked it up on the computer. He sounded puzzled. "There’s no reason written down here. Can I call you back? I want to talk to my supervisor."
He called ten minutes later with the reason: "We just don’t. We never approve an extension of speech therapy. It’s not our policy." I got the name of the department head and got off the phone.
How dare they tell me my little boy doesn’t deserve to learn to talk? How dare they discriminate against autism? That’s what it amounts to, this assumption that anyone can speak after just thirty two appointments. Maybe you can relearn to talk in that amount of time as you reconnect the synapses after a stroke or a head injury, but learning to form the words in the first place? Learning to make a connection that comes so easily to most everyone else? That’s patently absurd.
I told Laura what had transpired. She got on the phone with the department head, reported back to me the next step: writing to the Benefits Appeals Committee, which meets monthly. She said she’d draft a letter, show it to me the next day at our session. In the meantime, I called a fellow mom who said she did the same with an insurance company and they rolled over and played dead (ie: granted the extension), that most people simply say "Oh, my sessions have run out. Oh well," and go away. She gave me a lawyer’s name. I called him and left a message.
This felt doable. Scary but doable. Especially because Laura, on the phone, was so very sweet, so very accommodating. She knew we don’t have money to keep going if we have no assurance we’ll get reimbursed. She said she’d thought about having us come for free for now, but was worried she might grow to resent Damian. She said she wanted to work it out, though, and not to worry. And by the way, don’t worry about writing a check tomorrow, it’s my birthday gift to Damian.
I was overwhelmed. I was touched. I stopped at a florist to pick up a bouquet of flowers. I picked out two Casablanca lilies -- I love their white boldness -- and a bunch of red and purple flowers and the guy wrapped it all up while Damian ran around the brick floor and touched the various displays of bright blossoms with a gentle finger. The guy, a portly gray haired florist with a dour face, handed me a single orange flower which he’d enclosed in a small vial of water. It was for Damian, he said.
So Damian walked out of the store holding his flower carefully as I juggled my bouquet-plus-camera-plus-bag. He held and admired the flower all the way to Laura’s. He scootched up into the chair in Laura’s waiting room, still clutching the orange blossom.
Laura opened the door. She spotted my big bouquet (it was hard to miss) and said "Oh, you didn’t have to!" and "This is perfect! I’m having a dinner party tonight, now I don’t have to buy flowers." Which seemed somehow beside the point and a little off-putting, as if she wanted to push away the warmth of the gesture, keep it at arm’s length.
Damian slid off the chair and trotted to where Laura stood in the doorway. She said "Hi, Damian!" He solemnly presented her with the flower. He’d been holding it the entire way with the idea of giving her a flower too. I wanted to melt into a puddle of proud mommy goo.
They went inside to talk and play while I sat and pondered. I called my Regional Center guy (at Laura’s suggestion) and asked him if the RC could cover her services until the school district funding kicks in for a new speech therapist sometime later this summer. He said he thought so. It won’t be much, less than half her rate, but it’s better than the money draining out of our not-so-full pockets. Laura’s covered and we’re off the hook, and oh what a relief it is.
Or so I thought. When we talked after the session, Laura said it was good that they can pay her something, and she’ll figure out what more she’ll need from us. And, by the way, where’s my check?
It turned out we got our wires crossed. Either that, or she decided she was being too generous. She gave Damian the session for free, but not the previous three sessions. The check would have covered all four, so I assumed no check = four free sessions. Apparently not.
And the "what more I’ll need from you to make me comfortable" made me feel, well, used. She charges a fairly hefty fee and her husband’s a shrink, she’s clearly keeping the hounds at bay. And she seems to love working with Damian. I think she gets a charge out of how very well he’s been doing. She also knows we’re broke right now and that Dan’s going to be out of work until (gulp) October. And yet she wants more money from us? I don’t know how I feel about this. It would have felt okay before the phone conversation the day before, but the idea that she was seriously contemplating charging us nothing up front and now was going to charge us on top of getting money from the Regional Center? It starts to feel like she’s more interested in the money than in Damian.
Something else: she’d written that letter to the insurance company. That was fast. That’s terrific. But. As she handed me my copy, she told me she’d faxed it to the insurance company first thing in the morning. That’s not terrific. That is, in fact, pretty damned lousy. It precludes my getting together a kickass appeal, with her letter as part of the arsenal but not the whole shebang. It means that if I want to gather said arsenal, I have a very limited window to do so: until the next meeting of the committee. It is, in other words, very uncool. I believe it comes from arrogance, as if this appeal is entirely up to her and I’m just a bystander. If she wins, I’ll be delighted, but if I can’t get this lawyer to call me back quickly (and thus far I can’t), and I can’t proceed with an intelligent plan of attack soon enough and the committee meets and looks at her single one-and-a-half-page letter and makes their decision based on that and decides "no, we don’t want to change our policy just on one woman’s non-legal say-so," then I am, to put it bluntly, screwed. Rather, Damian’s screwed. The next step involves legal fees and court dates and frankly, we’re broker than broke already. This is not a realistic option. Screwed.
Or maybe not. I’ve had this feeling all along this road that everything Damian needs comes to him just as it should. The truly lovely principal of Damian’s disaster-of-a-preschool gave me Laura’s name. Laura started with him right away (she’s now got a waiting list). She turned us on to Greenspan and Floor Time.
When Dr. Red told us about the two possible special needs preschools for him, I called one. They were full until September, and besides, their approach wasn’t strictly DIR (a/k/a Floor Time). And when I met them (we had an evaluation for a social group -- an autistic Mommy and Me), I found their approach odd and not quite right for my little boy. The other school, however, was a different story. They use a full-on DIR approach and when I called, they told me there was ONE SPOT OPEN in the class he’d join. We visited immediately and fell in love with the place. We took the spot the next week. Damian loves it there.
When I called two places for occupational therapy, one said "no slots open till at least July" and the other said "Let me recommend the woman I work with." That woman was Heidi, who had just moved to LA, who still had a few slots open, who could see him starting that week. Heidi, who has been a revelation.
When I called around to get Floor Time therapy, I discovered that every single place in town has six month waiting lists. Every place except the one closest to our house, the one the Regional Center has the best relationship with, the one whose Floor Time Coordinator has a child in the same special needs preschool that Damian now attends. And when she set us up with the therapists, the first one she chose was Gamma, the one she likes the best of all her therapists, the one she uses for her own son. Gamma, who is a trained occupational therapist, who had instant rapport with Damian, who is brilliant with him.
I can’t shake the feeling that Damian’s been blessed on this journey. He gets what he needs when he needs it. It literally drops into our laps. So maybe this mess with the insurance company is telling us that it’s time to move on.
Laura was important in the first few months. She led us to Floor Time. We would have found it eventually ourselves, but how much better to start off with the right kind of treatment. She also got Damian over his no-communicative-speech hump and the freaky whispering, to boot. I don’t know if someone less experienced could have done it. It took every weapon at her command, and she’s got a lot of weapons. She’s very very good at what she does. But now he’s past that particular set of hurdles. Now, maybe, he needs someone a little more flexible, a little more intuitive, and yes, a little less focused on money.
It may be hard to get the school district to go for one-on-one sessions. I fully expect the speech pathologist who assessed Damian to tell us she’ll only recommend group speech therapy. She made it abundantly clear during the assessment that this is all she recommends. I therefore fully expect to take this to mediation and to bring an advocate along, one who specializes in this, one who can say "this is ludicrous, to expect a three year old with social issues to get enough past his discomfort and wandering attention to be able to focus on what the therapist is doing with the other kids." Hell, I’ll say it myself, during the IEP (Individual Education Plan) meeting next week. So will Dan. They’ll hear it in stereo. But if that doesn’t work, we’re ready for the next step.
We’re ready to find the next right person for Damian. If that turns out to still be Laura because the insurance company whines and lowers its head and shows us its tender belly like the dog of an organization it is, then that’s the way it was meant to be and she does indeed have more to offer him. If it turns out Damian needs someone else, we’ll get the school district to pay for it, one way or another. And I hope he finds the person who can be for him what Heidi is and what Gamma is. Someone with the magic touch, someone who has an instant rapport with him. Someone who can help him go beyond his comfort zone and bring that delighted gleam to his eyes.
current log / Damian essay archive / other essays archive / what's all this, then?
copyright 2001 Tamar