My partner and I have four kids between us; two of his, two of mine. These last weeks of school have been a pure hell of driving, rushing to dance recitals, helping kids study for exams, counselling kids through exam meltdowns, dropping kids off for end-of-year sport parties and packing for end-of-year overnights.
Every morning for two weeks, I have woken up and braced myself for the day, reminding myself that it is June, a month that, next to September, every parents just hopes to survive. The list of special end-of-year events feels endless and almost un-doable.
Our 15-year-old special-needs daughter Kili has less on her plate, and her opportunities to attend parties are few and far between. So you can understand why on Saturday night, while having already attended two dance recitals Friday night, ferrying kids around the city all of Saturday, and knowing I would need to rise at 6 a.m. Sunday morning for my son's triathlon, I offered to drive Kili to a teen dance she had been invited to.
We didn't want Kili to miss her first chance at enjoying a real teen dance. The dance was part of a day called Operation TrackShoes, a chance for children, teens and youth from around the province to enjoy a full weekend of athletic play and competition.
That day Kili ran the 50m and initially leapt out ahead, and then she decided to stop, turn around and wave at the other competitors, run backward awhile and then finish with her dad running beside her. She wasn't the fastest on Saturday but when she came home with her dad, she proudly wore her nine ribbons, whose colours had nothing to do with winning, but indicated which colours the kids and young adults liked best.
Apparently Kili liked blue a lot, which made me assume she had won every race. As a competitive athlete, I couldn't help but be a little interested in how fast she ran, how much she had shot putted, and how high she jumped.
High jump was her favorite event, although she couldn't quite get the concept of jumping over, it seemed more fun to just run through the bar full speed and then leap into that nice cushy crash mat. I questioned Patch on why he didn't coach Kilee to jump over the bar, I wondered why she hadn't entered the swimming in the afternoon because with her strength and swim technique she would be sure to garner a medal. I made a mental note to begin to plan next years lessons to include a competitive swim program for Kili.
And so, a few hours later, Kili wore a pretty flowered shirt and her favorite shorts and we left for the dance. When we got their athletes and coaches were just finishing dinner so we made use of the time of the time for Kili to get comfortable in the loud room of kids and adults. I felt a little uncomfortable because I hadn't attended the day and every kid seemed to be part of a team with coaches except for a few new kids like Kili. A few minutes later though, I recognized a couple familiar faces from Kili's class and we sat together until the music started.
The DJ announced the music would start and their was great cheering and hoopla, and then something amazing happened. Every single teenager in the room, every single one, leapt out of their chair and ran, wheeled, jumped onto the dance floor. Within a few seconds, every seat in the house was empty and everyone was dancing and singing and jumping around. I have never seen anything like it.
There wasn't an ounce of self-consciousness in the whole room put together, as some kids got so excited that they screamed out loud, Kili suddenly flung her arms up and squealed while parents got into the boogie with kids that needed some extra help.
The first dance was ABBA's "Dancing Queen," Kili's favorite music ever, so right then and there I started crying. My heart grew two sizes in that instant; I was filled with the love and energy in that room. I had so much fun as I danced with Kili and the "twins" Scott and Neil who both had down syndrome, and were amongst the most happening and least self-conscious boys their age. They did the fish, the wave, the lawnmower, the sprinkler, all with huge smiles on their faces.
Two dances in, a young man joined our little dance group and started spinning on the floor. The only child I had every seen do this before was Kili so it surprised and delighted me to see that this was actually a hip dance move. Kili watched in amazement as well, and then she got right on the floor beside him and started to spin at high speeds.
And right then I got it, this had nothing to do with who was the best runner, and who was athletic and autistic, or a great swimmer and downs syndrome. This was about joy, pure and simple.
The organizers of Operation TrackShoes offered an opportunity for people with intellectual disabilities to play, to run and jump and dance and connect with a community of people who embraced them without judgment or fear of proper appearances. These teens and adults live everyday in a world where they don't "fit in" not because of anything that they are doing, but because of our own discomfort with looking different, acting differently, speaking too loudly.
These young people have the real gift, the gift of expressing themselves authentically, without a self-censoring process that sifts out so much of the joy. We are the ones who have the disability, the inability to express ourselves authentically in our life, the attachment to fitting in that is so near and deep inside us that we rarely can let go of it.
Just look at the daily gossip television shows, and current events to see how desperately we are all working to look and act the same. Originality, creativity and authenticity are being eroded by a huge wave of homogenous thinking, acting and appearing.
On Saturday night I couldn't help but wonder: How often does our need to not stand out prevent us from experiencing joy.
These kids won't be the ones straightening their hair, getting their teeth whitened, and wearing expensive designer jeans. They will never fit into society's idea of "normal" because the energy normally spent on conformity is redirected to more important activities, like expressing love, joy and happiness.
When you have a special needs child, you stand out the minute you walk into the book stores or your local coffee shop, but before long, you stop caring, You know you have been chosen to travel a special journey with your child and however difficult and wonderful this journey is, it is a journey of a lifetime.
Today I stopped complaining about pace and lost swimsuits and too many hours spent driving kids; today, through Kili, I remembered that there is joy in every experience, if we just get up when the music begins and start dancing.