22 March 2001
You know the feeling of paralysis that comes over you when you should be somewhere, but you played hooky to go somewhere else, only the elsewhere got up and left? No? I do. I sat in the car caught betwixt and between. What’s better for Damian? For me? How can I know? When did life get so complicated, the smallest decisions so fraught? (A month and a half ago, that’s when.)
I finally got out of the car and led Damian through the now empty house smelling of fresh paint and floor polish to the back yard and the playgroup that wasn’t. Damian spotted a rusted-through toy sit-on car on the porch.
But Max got there first. "No, mine!"
Kids are funny. I’m sure he’s ignored that car for months, it’s become part of the bumps and knobs of the porch. But when another child showed interest, it suddenly became the most important object for miles. He had to rush over and symbolically pee on it to mark his turf.
Damian, of course, backed away immediately. It may be a long time before he can handle confrontation. The first time he says to another kid, "No, mine!" or "But I wanted it!" I’ll cry and smile and cry some more.
When Damian backed away from Max and his prized car, I thought "What am I doing here? I don’t know if this class will be any better for my shy autistic boy than where he is now. Can this be right to throw him in with all these so-strong personalities?" But toddlers have strong personalities everywhere. It’s one of their main ingredients. Mud, sand, juice, giggles, skinned knees and perversity. Mix ‘em up and you have yourself one feisty young person. How do I know this? I have one of my own. He may have neurological issues, but he’s a healthy little guy emotionally, where it counts.
We stayed. I stood in the back yard watching Damian get frustrated at the lack of toys (they all migrated to Melissa and Terri's new house). He started running back and forth along a pathway, following the line of stones. We used to call this cute. Now we call it stimming (self-stimulation). Now when we see him running in tight circles, we pull him into a game of ring-around-the-rosy, bringing him back to earth. Reconnecting.
Grace watched Damian’s concentration as he traced and retraced his steps along the path and called it patterning. She has a high functioning autistic cousin, it turns out. She knew what I was talking about. She’s one of the only people I’ve told who didn’t say "Damian? Autistic? But that’s impossible." She knows it comes in different flavors. She did say "That must so hard for you to deal with." She also said, "I think you’ll like this teacher, I think it’ll be a good situation for Damian."
With that, we left. No, I didn’t walk off in a huff. I just got perturbed watching Damian stim and knowing it wasn’t the right place or time to dive into his world, not standing with another mom on a sunny morning in an empty yard. So I took him to school.
Which felt odd too, walking into the place I didn’t expect to see, the place I’ve already decided to leave. It’s a little like sleeping with a guy after you’ve decided to ditch him, only you haven’t told him yet. I was pretending to have an ongoing relationship with the school but secretly I was starting to date other schools on the side.
When we arrived at the classroom, they were in the middle of snack time. Tyson threw herself on Damian in a big bear hug. I guided him to sit down at a table; Michael proclaimed to me, "My mommy said we should be nice to Damian and help him be happy." What do you do with that? I said, "That’s very sweet." Which it is. In its way.
In a few minutes, it was yard time. All the kids went trotting down the hall in clumps of two and three. Damian too, first holding my hand but then he let go and galloped off in the group. For a moment he looked like he belonged there.
The yard, though, is an overwhelming place for Damian. The kids used to go to the little yard, and then the side yard. He can handle both of those, but now they go to the "big yard." The jungle gym is larger, too scary for him, there are far fewer interesting side toys, and -- worst of all -- kids from several classes merge into one loud chaotic bundle of energy. I cringe for Damian every time Miriam says "we’re going to the big yard today," and she says it more and more often as the kids prepare for their next stage of preschool evolution.
So I stuck close to Damian. I helped him ride a tricycle (he can even pedal a little now, though he tends to go backward), I helped him clamber into the sandbox. I watched Miriam gossip with another teacher and went up to her. "If you have a minute, maybe you could play with Damian." To give her credit, she did try. She went over to him. He was tracing the lines of a slinky looking ladder contraption. She tried to get him to climb up, but he wasn’t having any. I could have told her as much. She gave up quickly and left him to his own devices.
I saw the principal. I couldn’t help myself, I hailed her. I didn’t mean to, I didn’t intend to break it off in a public place, or to break up without a fallback boyfriend -- I mean, school. I didn’t mean to do it. But I did it. We sat at a picnic table among the chaos of children and I said, "I’ve been soul searching all week -- Dan and I both have -- and we’ve decided to pull Damian out of here."
She was lovely, she said "I wish it could have worked out, I wish we could have made accommodations for him, but I understand." And she gave me a big hug, as well as her pledge to give back the five months unused tuition. I told her we might as well round out the month, have him quit as of the end of March. A three month trial. Three months from innocence to knowledge. Knowledge is good even when it’s painful.
Time to move on. I don’t know how the next few months will pan out; I don’t know how long it will take to get him into a good program or whether the little school-in-a-back-yard will be suitable. I don’t know much of anything right now except that Dan’s starting a pilot in a week and a half (therefore probably working late and possibly working weekends), adding to my stress level, but that my mother will be here in a month and then Dan will be on hiatus and HOME HOME HOME! for at least three months starting the second week of May. So I know no matter what, help is on the way.
Mostly, I know one thing: it’s time for a change. Time to get out of that school. It’s a good place, a nurturing place. For a neuro-typical kid. Not for Damian.
I felt so free after talking to the principal, I felt like tap dancing on the jungle gym. Instead, I slid down the side-by-side slide holding hands with Damian.
I found Miriam to give her the news. I said, "You’re a great teacher but you just don’t have the time to spend with Damian, not with the other wild ones in the class." I was feeling magnanimous. She agreed with me far too quickly, said she has to keep her eye on Tyson all the time. Not five minutes earlier, she was in the sandbox with Tyson and Gabriel. Tyson raised her shovel in the air. Miriam said, "you’re not going to hit him, are you?" and Tyson put the shovel down sheepishly. I believe Miriam. To a point. She does have a lot to contend with. But she seems far more interested in dealing with Tyson than with Damian. One is the known, the other the unknown.
We’re so out of there.
The kids migrated to the little yard to make way for the kindergarten gang. Damian loves that yard: everything is close to the ground and he doesn’t have to fret about scary heights and unstable-feeling mesh flooring. So he was happy clambering through tunnels and sliding down slides. Nora, the assistant teacher, watched him and said, "He’s so much more comfortable now than he was. He’s really enjoying himself." It felt so odd to then say "We’re leaving after next week." But the truth is, he’s doing so much better because we’ve been doing lots of floor time, not because he’s magically adjusted to school. So he’ll do better with more floor time, not more mainstream schooling.
Janice arrived to collect Gabriel for Dance and Jingle. It’s a Mommy and Me style music class that meets in an empty classroom on Mondays. Janice pulls Gaby out of class half an hour early on Mondays to go dance and -- well, jingle. She always invites me along. This time I said yes.
Damian loved it. He started drumming right away, and kept on drumming -- in perfect rhythm with the music -- through the first part of the class. He shook pom-poms with abandon and whispered "pom", and he tossed fuzzy balls into a parachute and giggled as they bounced. He had a great time. Laughing, attentive, completely involved. He was more engaged than half the kids there, his face more animated, his demeanor more upbeat. I sat there feeling so very good. Warm inside, proud and pleased. My heart opened and let me breathe. You don’t know how bad you feel until you start feeling better.
The teacher went around the room at one point, asking each child to tell her the color of their pom-pom. Gabriel said his was blue, then reconsidered and called it yellow. Apparently everything’s blue until proven otherwise. When she got to us, I quickly told her Damian wasn’t going to answer, she nodded and moved on.
After class, I snagged her. I said "I’d love to keep coming on Mondays. But there’s something you should know. Damian is high functioning autistic." Her reaction was just perfect. She said it’s a great class for autistic kids. It seems she’s got spectrum kids in almost every class; Mondays were the only day she didn’t. I said, "And now you do." She said she always knows immediately when an autistic child walks in the door. Except this time. She never would have guessed if I hadn’t told her. That felt exceptionally good, though there’s no reason it should. Does it really matter how obvious his issues are? It shouldn’t. But in a way maybe it does. Maybe it makes the outlook more positive, the future a little more known.
As we stood and talked, I felt like I’d come home. Just next door, the kids were all saying goodbye to Miriam and Nora and hello to mommies and nannies in a room I no longer find welcoming. In this room right now, though, I felt accepted, my child and me both.
Another mother lingered as we talked. She asked questions about how we knew. The teacher asked questions about treatment approaches. I described floor time and the teacher said "it makes so much sense!" I illustrated for them. Damian had gotten hold of a bungie and was running the hook along the length of the cord. I used the other hook to grapple his hook, with an "Uh oh!" and a smile in my voice. He had to fight me for his hook. Then I twined the loop around his torso so he had to get untangled. He grinned at me and did his best to figure out the puzzle of body parts and stretchy rope.
They both commented on how engaged he was. How, again, they’d never have known. How extremely high functioning he is. And again, I felt good. Instead of looking at Damian sideways and perceiving him as different and other, they were looking at him with respect and appreciation for how much he’s got going for him.
The teacher welcomed us to the group. The mom was interested in a play date. When I walked outside, back into the March sun, I heard Janice saying to the teacher, "And if any parent can handle it, she can." Which gave me a glow.
This is a difficult time in our lives. The most difficult. Starting out on this journey, hoping with clenched fists and whispered prayers for the outcome to be as sunny as the brightest day in this tropical paradise, but not knowing. Just not knowing. And therefore sometimes so scared. So overwhelmed.
Monday felt like a step forward. Saying goodbye to the pretence that it’s all going to magically get better on its own, saying hello to full on engagement in our new life. Even if we’re not yet sure what that life will look like.
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copyright 2001 Tamar