Swap-N-Play, the fabulous sharing and playing space in our neighborhood, had it's third year and hosted a massive birthday party to celebrate. Simon spends a lot of time there; it's his substitute for the socialization of preschool and a big, well stocked place to get his home occupational therapy. Usually, when he goes, it's during a mellow time, when most kids are in school.
This, though, was an EVENT. Swappers, past and present, were showing up in droves, potluck food, excited kids, and rainbow clothes in tow. Every room, even the often calm library, was full of kids, the nap room converted to a photo booth. As Simon shouted to us during the night "people are running everywhere!"
And through it all, Simon participated, talked to kids, and truly had fun. This four year old has had major improvements in dealing with children recently, and with that, a lot of food, his headphones, and a plan, we had a good night.
We started this morning when we were writing his daily list on his dry erase board. "Make Coffee," I wrote, because I can't do anything else with him until I'm caffeinated, and he likes to help. "Breakfast, vitamins, brush teeth, playtime," we continued. I wrote lunch and quite time, then paused. I told him we had something to do that afternoon, and explained the party. He was excited, as any four year old would be about throwing things and eating cake, until I told him the plan. Every so often, every fifteen minutes or so, we'd go find a quiet place and take a break. He was distressed, but when it came down to the choice between going with breaks or staying home, he accepted the breaks. "Swap N Play Birthday Party," I wrote, and in parenthesis, "with breaks."
Fifteen or so minutes after we arrived, I told him it was time for a break. He whined a little, not wanting to stop and not wanting to head down the dim hallway, but once we were sitting down there, he let me squeeze him and give him "hand hugs," and he willingly pressed hard against the wall with his feet and hands. At my instruction, he bolted to the trampoline and jumped the prescribed twenty times.
The second break Simon whined some more when I told him he had to wear his headphones, but his growing self-awareness must have kicked in, and he put them on and did what I asked. He took them off after his 20 jumps on the trampoline and carried them in my hand, just in case. "Just in case" came when the music started. Simon bolted into the middle of the circle, dancing his wild dance in front of all the politely, properly seated children. I pulled him aside and put my hands by his eyes like blinders, told him he had to stay on the carpet square. He jumped from one to another getting too close to the woman's guitar, and I offered him his headphones. He declined. I offered again, he accepted.
He still wiggled, he grabbed my hands when I tried to follow the snow dance motions, while the other kids and parents danced along as directed. But he stayed on his carpet circle. Until he asked to take them off, when he jumped into the middle again and screamed when everyone lifted wiggling fingers into the air. The rest of the night went by with breaks, headphones, cheese, and cake. Simon kept his headphones on, almost completely willingly, and he ran, dodging kids and sliding in front of adults.
We left, shortly after cake, and aside from a brief tussle over brushing teeth, he kindly and happily went to bed, with far less whining, kicking, hitting, and screaming, than usual. I'm exhausted, I didn't talk to anyone all night, and barely enjoyed my cake, but this night was a wonderful, exciting, fabulous, success. The list, the effort, the OT, the intervention, the money, the stress, the exhaustion - all of it - was proven worth it tonight. My son had a good night at a big event full of kids, and that is truly worth it all.
Jan 6, 2012
“Hello. How old are you?” has become Simon’s standard greeting for other kids around his size. What’s remarkable about this is that Simon has a standard greeting for kids. My son, who stood with arms out when any child approached him during an evaluation, greets kids in an effort to truly connect and play.
For me, it’s just further confirmation that his issues are not autism, but really truly solely sensory. He didn’t hold his hand out in defense because he didn’t want to play with another kid, because he couldn’t read them, or didn’t know how to interact. He held his hand out in defense because the gym was busy, loud, and bright. Any more sensory input from a child talking, touching, or even being too close to his body would have been overwhelming.
As Simon has matured and we’ve learned how to help him cope with and avoid sensory overload, his mind and emotions have calmed enough to let his charming little social self come through. With the immediate press of input aside, his mind has the capacity to practice talking to kids, saying hello, waiting for a response, and responding back. He got a boy he’d never seen in a playground in California to talk to him, tell him his age, and start to play a game. My sappy self got a little weepy seeing my boy instigate a friendship.
Of course, he still yells, and he even kicked a kid for the first time recently, when the boy bumped with something on a day Simon couldn’t take any more input, but day to day, overall, he’s changing and progressing socially as his sensory issues are managed and begin to resolve within his little neurological system.
Yes, it’s delayed, and yes, it may not be the most common method of saying hello, but I find a lot of victory in that little “how old are you.”
The end of November and beginning of December were a difficult time for me. With work stress, special-needs kid stress, financial stress, and the stress of some serious problems of a few really dear friends, my body started to shut down. I’ve always believed that I have a particularly strong emotion-body connection, and it makes sense with the overall sensitivity issues of SPD. My brain is wired such that I feel everything more than most other people.
My general body pain ratcheted up to an unbearable level. I visited a few doctors a few times in a month, I stopped sleeping well because of the pain disturbance, and my fatigue increased as my sleep went to pieces and pain sucked my energy dry. I fell asleep on the bus. I fell asleep at the dinner table. I left my husband, who had been home all day with Simon, had made us dinner, and had to begin his own work, to get our cranky son to bed after dinner as I slumped under the covers. I started throwing up a few times a week for no physical reason. My emotions shut my body down.
Then, we went to the beach. A wonderful colleague of mine owns a gorgeous beach house actually on the beach in Manzanita, and generously let us stay there at no charge during a weekend the house didn’t rent. We took off as soon as we could after work on a Friday and spent the entire weekend lounging, letting Simon watch TV while we slept in, and delighting in our son’s extra-sensory joy of the coast.
My pain decreased to baseline and I felt rested for the first time in months. I stayed up long enough to spend time with my own spouse and had enough energy to enjoy it. I didn’t get sick or feel even remotely nauseated. We walked slowly across the sand, with fresh air, unseasonably warm weather and blue skies giving all three of us consistent, calm, refreshing sensory input. This weekend in mid December gave me everything I needed to get a break from the crush of stress that shut me down physically. I’m still tired and in pain, but I have a little kick of energy and hope enough to press on in my own sensitivities and difficulties to find a real plan or resolution. Perhaps someday soon I’ll even stay awake for the entire bus ride to work.