20 May 2003
At the party. Damian is so quiet. So shy. Not shy, no, this is a manifestation of his autism. Withdrawal in a group of children. Have we come so few steps forward in the past two years that we still need to coax him to play with balls at a birthday party, still need to cajole words out of him as he stands stock still and waits for the ordeal to be over? This isn’t my boy, certainly not the kid we see at home. But I don’t know where that one went.
In the playground now. Dan thinks the swing may help Damian recover his equilibrium. Damian thinks the swing is a very bad idea. Even though we bribe him with birthday cake. No swing, no way. Not high, not low, not fast, not slow. I’m getting flashbacks. Two years ago, Damian was terrified of swings. These days he loves them. But not today. Not even on Mommy’s lap. So okay, kiddo. We’ll go straight home. No chocolate cake or ice cream for you. It’s called a threat and it’s evil and awful and god, we’re doing this over a ride on a swing, what kind of horrible parents are we? But he allows me to pick him up and put him on my lap on the dreaded swing and within a minute he’s smiling and laughing and demanding we go higher still. And then he boots me off and goes sailing up into the sky solo, a reorganized, reconstituted child.
Back in the party room. His voice is back, though soft. He asks the hosts for his own piece of cake. He eats quietly, plays a tiny bit, but assents with relief when we ask if he’s ready to go. So withdrawn. Shut down, shut off, self-protective. And it’s a damned party. This is supposed to be fun, not a torture chamber. How can he ever go to kindergarten, how can he cope with twenty noisy kids during free play, during group shout-out-the-answer time, during recess when they’re clambering on the jungle gym and tossing balls into the hoop with élan and ease? How far has he come? Because right now it doesn’t feel far at all, not nearly enough.
On the walk home. Damian runs ahead of us, laughing and chattering about how he’s a butterfly, the wind, a tornado, I don’t remember what, but I remember the transformation. Butterfly emerging from his chrysalis. Cocooned in fear among strange children. Flying free away from there. Is he doomed, then, to a double life? Quiet and withdrawn, barely functional and certainly not himself when he’s around strangers in a situation that overwhelms but then chatty and witty, exuberant and imaginative in private? Some people are like that, I guess. Maybe that’s okay. Maybe. But why does my throat constrict?
At home. We regroup. Watch a lot of TV. Cuddle. Play, but low key. No time to push, this is healing time. Maybe with a firmer base, with a stronger sense of security, this fear will melt over time. But we give him that, surely. Us and his dozens of therapists too. (Not dozens? Surely you miscount. It feels like veritable hordes of friendly, gently pushy adults surrounding and supporting this one still-young child.) What’s the answer? What’s the secret? What will it take to help Damian shed the fear that seems at times to come into his body through his pores, to invade his blood and nerves and bones? It’s a mix of the psychological and the physiological, this sensory overwhelm that sets his body off balance and his mind into shut down mode. But how much can we do to help him get over this? How malleable is the human brain? How do you vanquish an invisible, intangible enemy and free a child from its clutches?
Still at home. I talk on the phone with my cousin, who was supposed to bring her son D. to the birthday party today, but with a house filled with extended family, four children all needing naps, she decided caution was in order and stayed home. But we want to see her brother (in from out of town) and meet his three year old son. We plan to come for dinner.
I picture Damian in a room filled with children. One known, yes, but two unknown boys. Is this a mistake? It doesn’t matter. Sometimes you need to do something for yourself, regardless of the emotional consequences for someone you love.
We pull the car up outside my cousin’s house. Damian and I have been coming here once a week lately. Kahuna supervises a weekly play date between the boys, one of our two weekly floor-time play dates that have replaced Damian’s hours of purgatory at the Afternoon Preschool. The play dates have been going well, but this is the first time Damian will see D. without Kahuna facilitating. And to add two more kids to the mix? After the morning we had? I’m not optimistic.
As Damian rings the bell, we hear D. inside shouting with pleasure. My cousin opens the door and gives us hugs. Damian runs off in search of his friend. Will he stop, stock still, at the sight of the group? Will he do a quick-change retreat into his snail shell? Or will it be okay?
It’s more than okay. It’s fucking great. Damian wades into the rowdy group in the family room and joins in the fun with absolutely no hesitation. Later, the parents of one of the boys comment on how well Damian and D play together. This is before they know a thing about his diagnosis. Even for regular kids, they’re saying, this is noteworthy. The kids play upstairs, downstairs, in the yard. They have dinner together. Late at night, while their parents all eat, they sit in the family room and watch Wallace and Gromit on DVD. We hear loud shouts. Someone worries, but I don’t. I recognize my kid’s voice. He’s excited about the action on TV, talking back to the screen. The other boys join in. When we peek in to check on them, we see Damian and D on the couch. Side by side, leaning against each other. Friends.
The tension that tied my stomach in knots, reflected emotion from Damian’s anxiety, it’s gone now. Replaced by a warm glow that radiates out, embracing the room, the house, the world. Yes, he really has come a long way. Yes, he’s on the right track. Yes, he’s in good shape.
But the morning was no fever dream. It was real. As was Friday’s visit to a preschool. Damian ran up the jungle gym alongside the other kids, but later inside the school he collapsed on the floor, curled into a tight ball with his forehead mashed against the carpet, seeking support and grounding. It was too much for him, this new environment with its chaos of children. Just as it was Saturday morning at the birthday party.
On Friday he ended up in my lap, pressed against me in a tight, sustaining hug. Proprioceptive input. Hug strong and get pressure and love all in one. Then two little boys came into the room. They saw Damian on my lap and ran over to say hi. (This is a very friendly place). He turned his head away. (Oh, man.) They thought it was a game. They ran around to my other side to find him. Laughed when they found him. He smiled too but turned away again, intentionally or inadvertently continuing the game. By the third time they scooted to the other side to find his smiling face, Damian was definitely enjoying the interaction, though still far from his usual sunny self. A tentative opening up.
So which was the real child? The withdrawn boy at the birthday party in the morning or the sociable one who galloped into the late afternoon light of a family room? The latter, I think. But his sensory over-sensitivities, his overall anxiety, his issues, all that get in the way and turn him back into a caterpillar when we least expect it. Even after two years on this road. Even after so much progress.
It saddens me. I still wish for a magic pill that could make him all better but no, it’s a matter of hard work and hope. Lots of hope. After all, that evening get-together? Wasn’t two kids playing together but three and sometimes four, and two were strangers. Maybe it still requires the right confluence of circumstances for Damian to be truly comfortable, but the net continues to widen, the definition of what those circumstances are grows exponentially.
Sometimes when I think about the child he was two years ago, it feels like a dream someone else told me. That child couldn’t be the same boy who turns to me now in the middle of a busy store and says “I love you, Mommy,” who says after an evening with our current house guest, “Can I say goodnight to Julia?” and runs off to say goodnight and hug this semi-stranger. But it is the very same person. Same DNA. Same smell. Same long fingers and toes, same curve to his nose and cleft in his chin. Same wide eyes, taking in the world. He just talks about it all now. Talks and engages so much more than he ever could back then. He’s the same and he isn’t. And so, too, I hope I’ll look back on this weekend and say “Oh, how he’s grown since then.”
Onward ho.
For a glimpse of the boy I see at home, take a peek at today's photoblog entry.
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copyright 2003 Tamar