Damian's discombobulated December
17 December 2001
This is hard. Really fucking hard.

I thought it would get easier, but it hasn’t, not so far. I thought when Damian’s services were all in place, it would be smooth sailing. I’d have all this time for myself, time to write, time to work on the house, maybe even time to have a bit of a social life. I thought I would be able to stop worrying about him, or at least not so much. I thought I’d be able to entrust him into the care of trained professionals and back off a little.

It hasn’t worked that way. Oh, he has plenty of therapists working with him now. Too many. He’s in a special needs school with a main teacher and three teaching assistants for a class of nine kids. He’s got a speech therapist, three occupational therapists (one he sees during school hours, the other two in outside gyms), and a fluctuating total of four to six floor time therapists. It’s almost absurd how many people are involved in this little guy’s life.

Believe it or not, it’s not enough. But it’s not the quantity that’s the problem, it’s the quality.

If you’ve been following this journal in the past year, you have a sense of the amazing progress my little boy has made. It’s been a steady climb with occasional glorious spurts. It’s been heartwarming and breath-stopping and a huge fucking relief.

But it’s far from over. He’s still got a long way to go. He’s not able to make friends his own age. He can’t even play with them yet without a huge amount of support. His imaginative play skills are coming up but not full force, not yet. And his words are wonderful, his vocabulary continues to amaze me, but the thoughts he expresses are still so concrete, not yet about emotion and abstraction. Not yet.

We want him to soar, but in some ways he’s still tethered to the ground. If he keeps progressing along this trajectory, he will learn to fly, I’m still certain of that. But the key words here are "if he keeps progressing."

Three weeks ago he stopped progressing. Worse, he started regressing.

I would pick him up after school, ask him a simple question, see him fumble for a word he should know cold. Feed him choices, "Do you want to stay in the yard or go to the car?" and watch him repeat the phrase he wanted: "stay in the yard." Just like he was four months ago. Not the boy I know now, who would have said, should have said, the moment we walked out of the schoolhouse door, "I want to stay here! I want to play in the sand yard!" But his words were temporarily gone.

One afternoon, I stood in the grocery store aisle and asked him to look at me before I’d give him another dried mango. He couldn’t do it. He tried, oh he tried. But he couldn’t.

One evening, Dan watched Damian sit on the floor in his room and push Play-doh through a press. Over and over and over. Same damned hardening ball of red clay. Dan tried to engage him with a Little People figure. Damian turned his back.

What the hell was going on? Where was my little boy?

Sometimes he regresses a bit when he’s getting sick. Usually, he gets more sensory seeking: he’ll start head-butting me a lot or burrowing into the cushy guardrail on his bed or wanting to play the steamroller game (Mommy lies on the bed, Damian rolls over and off Mommy, shouting "I’m a steamroller rolling Mommy flat!"). He retreats into an earlier state. We all do that when we’re sick, we become little whiny children who need coddling.

Was he getting sick this month? He had little appetite, loose stools, a lot of gas. Yeah, maybe he was. We kept him home from school to see if it helped. He slept late into the morning, cuddled in my lap for an hour waking up slowly, then bounced off to play a game of tag. Um, no. Not sick.

Sometimes he regresses a bit -- usually in one area -- just before a development spurt. It’s as if his brain has to reshuffle and rebalance before the new information can be used. Was that it? We waited for a development spurt. And waited. And waited. Usually it’s a matter of a few days, a week at most. This time it lasted weeks with no sign it was getting better.

So. He wasn’t sick. Wasn’t about to astound us with some new skill. There’s only one other answer: stress. But why? Dan’s settled into his new-old job. He comes home at a reasonable hour nearly every night now. We’re a happier family. The horrendous pressing weight of impending financial doom has lifted and we can breathe again. If anything, Damian should be thriving. Could it be a kind of "things are better, now I can fall apart" thing? I know I do that. But a child? Seemed unlikely. Especially as days turned into weeks.

What else can cause a child stress? School. Therapies.

He had two new therapists. One started working with him two weeks ago. I’ll call her Sally. She’s a solid woman with a long blonde braid. There’s something comfortable about her, but also maybe a little distant. She was supposed to see him at school on Mondays and Fridays after class.

The other started at the end of October. I’ll call her Bonnie. She’s thin, with short red hair and a thoughtful way about her. Very talkative, a worrier. Her affect is a bit flat, though, in a reserved Midwestern sort of way. She was supposed to see him Friday afternoons and Saturday mornings.

Was either the stress-giving culprit?

Sally started working with Damian on a Friday. When I picked him up, they were playing together with a ball chute. He seemed to be having fun. No surprise, he loves balls and motion. As I talked to Sally, Damian found a peanut-shaped therapy ball and started rolling on it. Sensory seeking. A sign that he wasn’t at ease.

He threw a fit when I told him it was time to leave. He started hitting me, which he only does when he’s at the end of his rope. I chalked it up to a tired boy and wrangled him to the car.

When I picked him up that next Monday, he had another fit. This time he wanted me to carry him to the car. My back was hurting. I said no. He got mad. Hit me. A virtual replay of Friday’s emotional fragility. Tired again? Or something else?

We got to the car. He said, in this sad little plaintive voice, "I want to sit on Mommy’s lap." So I sat cross legged on the sidewalk and cuddled my sensitive child until he felt secure enough to collapse into his car seat. He was asleep within minutes. Simple exhaustion? Or stress-related fatigue?

I worry about Sally. I’m loathe to jump to conclusions (well, no I’m not but I should be), but something’s throwing him off after he’s been with her. He spends Thursdays after school with another floor time therapist, Robin. Even when he’s exhausted or coming down with a cold, he still enjoys being with her and walks to the car chattering away, holding my hand. He feels secure with her and has from the beginning. Sally? Not so much.

I haven’t been able to get much from her when I ask her impressions of him in and out of his classroom. She doesn’t ask me any questions, either. She keeps deflecting, saying that’s what the monthly clinic meeting is for. Yes, but she’s not going to be at the clinic meeting. Don’t we need to talk too? I’m used to a dialogue with the people working with my child. It’s a crucial piece of the ongoing puzzle-sorting we all do. Doesn’t she need to know how I perceive him, what I think he needs? Everyone else has asked. Not her.

She did say one thing the last time I picked him up, last Friday: she told me that he’s warming up to her. Apparently the first three sessions, he spent much of the time lying down in the sand raking the sand into patterns. She joined him, so they were raking together, which is an appropriate response. But the fact that he felt the need to do something so perseverative, so repetitive and mindless, tells me volumes about his comfort level with Sally. She only told me this by way of saying, "He didn’t do it this time, isn’t that great?" They only tell you the good stuff, these therapists and teachers. I’ve started to become adept at reading between the lines.

I told the floor time director I didn’t think it was working out with Sally. We have a scheduling conflict on Mondays, for one thing (convenient, that), but I was blunt: Damian doesn’t respond well to her. He’s a wreck after he’s seen her. She said she’ll make the switch.

Problem solved? Lose Sally and downshift Damian’s stress level? That sounds so simple, too good to be true.

It was. There was still Bonnie.

Two weeks ago or so, on a Friday, Bonnie came into my office at the end of a session with Damian and told me that he doesn’t warm up to her until the last ten minutes of a two hour session. She was hoping to extend that a little bit at a time; said maybe it’ll be fifteen minutes next week and twenty the next...

Huh? That doesn’t sound like my child, I thought but didn’t say. I did say, "Are you sure?" and "Have you tried revving him up with a good game of tag or a trampoline romp?" She said she had. It didn’t work.

What was going on? I liked Bonnie. She was imaginative and experienced with preschoolers and I thought she could help guide Damian into the wonderful world of imaginative play. But something wasn’t right here.

Dan wandered into Damian’s room during Bonnie’s Saturday floor time hours. He had come to take photographs for Damian’s still-nightly slide show but ended up on the floor with the two of them for the whole two hours, trying to show Bonnie how to help Damian play interactively and not shut down. He said she tended to direct the action, didn’t follow his lead. No wonder he was closing up.

Imagine you’re just learning to speak Spanish, and this older, wiser person has asked you to talk to her in Spanish. She knows you know little. She knows you lack confidence. You very tentatively ask, "Como esta?" <how are you?> but instead of the "Estoy bien, y usted?" <I’m fine, and you?> response you expect, the other person says (in Spanish), "What time are you taking that airplane to Madrid, and where is the fish?" You’d turn mute, wouldn’t you? Well, that was essentially what Bonnie was doing. Damian would make a tentative overture and she’d railroad over it without realizing what she was doing. Shutting him down.

When she showed up the next Friday, she immediately started peppering Damian with questions: "How was your day at school? What are you doing with that stick?" I cringed. I’d talked to her about this already, how important it is that we step back and don’t make him feel so on the spot. I said it again: "Don’t do that. Don’t ask him questions."

Later I peered out the kitchen window. Damian was racing around the back yard "raking" (read: scattering) leaves. Bonnie was running alongside, trying to get in his way, trying to join his play. He kept turning away. What was going on here?

We talked. She asked me to join her the next morning so she could learn from me. I agreed. It became painfully clear to me that Bonnie didn’t know how to do Damian-style floor time. She didn’t know how to keep from directing the action. She wasn’t flexible enough to go with the flow. Damian’s flow, that is.

So I did. We ran to the guest room, jumped on the trampoline together. We sat on the trampoline and "fished" for things in the "water." Damian became a boat in the water, sliding forward on his butt on the wood floor and exclaiming, "I’m a boat swimming in the water!"

A fuzzy teddy bear flagged the boat, saying it couldn’t swim. Damian Boat rescued Teddy, gave him a ride. Bonnie became a boat too, rowing alongside Damian Boat, who then (his idea) headed out to sea (the kitchen).

I stood back. Bonnie looked like she was in the flow now. What would she do next? Follow him, maybe, be two boats in the wild kitchen ocean, maybe survive a storm, get knocked ashore in the dining room? He loves that sort of physical play. That’s what I would have done. Following his lead, building on his ideas.

Not Bonnie. She grabbed a beach ball, tried to toss it to Damian. I guess it was supposed to be a boat passenger? I don’t know. Damian didn’t either. He was already halfway out the door to the kitchen when she threw it. He stopped in his tracks. Abruptly stood up. Strode back through the guest room, past Bonnie and me, into the bedroom. Alone. Isolated. Cutting her off. An extreme reaction? Assuredly. But he’s three years old. He’s still in blunt mode.

It was clear in that moment. Bonnie couldn’t do it. No matter how much Dan or I explained, she just didn’t get it. I think she’s probably very good with the right child. Just not with our child.

Floor time is not an easy job. You can’t learn the tools and then apply them across the board. Every child is different, and the same child can be radically different month to month. Gamma has been working with Damian since June. At first, she could be very demanding with him. Insistent. Keeping him on task. Keeping him focussed on her and the interaction. She brought his joint attention, his ability to stay engaged, way up. Now, though, he needs something different from her. Fortunately, she’s flexible enough to change. And, maybe more importantly, she’s spent enough time around us to respect the hell out of us as parents. She will therefore take whatever I tell her to heart. Bonnie won’t. Sally won’t. They still see me as "the mom," ie: the pain in the butt who wants to chew their ears off and lives in denial about her son’s real abilities. Yes, I chew ears off. That’s part of your job description, guys. Listen to the moms. We know our children. And no, I’m not in denial. You want to peg my boy as "an autistic child who therefore acts like X and Y" and I say no and again, no. He’s not just a shut-down autistic boy. He’s my boy and he’s not terribly autistic, either. If he shuts you out, there’s a reason.

Bonnie’s gone. Her absence seems to help Damian’s equilibrium. Sally will probably be gone soon. Maybe that will help too.

I wish I could say that was the end of the story, that it solved Damian’s stress and insecurity and we all started sleeping better. But it’s less than half the battle. Stay tuned for the rest of the story.

Well, no, not the rest. That continues to unfold and will for the next few years, I suspect. But the other two pieces we think belong in this particular puzzle, the puzzle of what made Damian so uncomfortable this month? That part I can fill in, and soon.

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copyright 2001 Tamar