Yesterday was a pretty tough day for my son. He’d been looking forward to the country-wide Special Olympics bowling event for weeks. His excitement was mostly about riding the school bus and seeing “friends” with whom he could play his wordless hand-clapping game. His expectations and the reality were so very, very far apart.
Don’t get me wrong; we love Special Olympics and all that it has opened up for Nikolas. It gives him an opportunity to learn new skills, to experience new situations, and to practice some of the very important listening and participation skills which challenge him greatly on a daily basis. I appreciate that he can participate in whatever manner meets his needs dictated by his physical limitations in both motor and visual processing and coordination. Frankly, I also love that Nik is often not the most obviously impaired child present – as it so often feels when we are at the park or even within Nik’s own wonderful classroom setting.
So, why was it such a tough day, you ask? Simple, really…
Take approximately 200 kids, each with an accompanying teacher, paraprofessional and/or nurse, add a family member for every other kid present, the staff and volunteers from Special Olympics, the requisite number of bus drivers to transport those children and school professionals from four different school districts and pack them all into a 32-lane bowling alley for three and a half hours. I don’t have many sensory issues of my own, nor do I have any impairments which make it exceptionally challenging for me to process visual and auditory input like Nik does, but I can tell you that my brain was still buzzing from the tension more than six hours after the event was over.
Nik didn’t even make it through the first of two full games before he was spent. He went from a bubbly and exuberant boy when they first started, to a child who could not even pull himself together after the first five frames of the first game. He simply shut down. DONE. No amount of coaxing or cajoling would work. In fact, it made it worse.
If I had the benefit of today’s hindsight yesterday, I would have simply taken Nik home. It was shades of our Special Olympics soccer experience of a year ago when Nik was so utterly overwhelmed by the sheer volume – both in terms of people and noise, that he could do no more than throw himself on the ground and wail his outrage and frustration. Yesterday was deceptive in that he did not throw himself on the ground, but he made it crystal clear he was not going to bowl any more. Instead, we spent hours walking up and down and taking some breaks to sit and drink some soup or nibble at his bagel.
Given how crummy he feels right now between his infected ears and sore throat? It’s a miracle he didn’t throw himself on the ground and weep and rail at the world; I’m not so sure I wouldn’t have in his situation. Progress.
But at what cost? I watched as my beautiful boy flitted from place to place like a hummingbird –unable to fully alight and be comfortable or content for more than a flash before the compulsion to move on took hold. We walked and wandered. We tried to eat lunch and sing songs in the semi-quiet rooms near the back of the bowling alley. Still, it was all too much. I could see the perseverations rising like flood waters and I felt helpless to figure out where and how to draw the line. I wanted to hang in until the end so that Nik could get the ribbon for which he had worked so damn hard. He may not have finished his event, but he gave it his all and I was proud of him. I wanted him to hear the crowd celebrate his achievement, too.
As the awards were being given out, Nik’s para, Ms. M, and I realized that something was wrong; Nik’s entire group had been given their medals and ribbons and were making their way toward their school groups. There we stood, confused. I know Nik didn’t understand the ramifications of what was happening, but Ms. M and I both did. I felt hot tears prick my eyelids. Ms. M adores Nik like he was her own son; she asked me to stay with Nik and strode off like a mama bear on a mission.
Ms. M returned triumphant but disgruntled. When Nik hadn’t finished his first game, a volunteer removed his name from the roster. On paper, it was as if my boy had never shown up, had never given every ounce of heart and energy he had. As Nik sat slumped against my shoulder and my heart was, figuratively speaking, on the floor wailing in frustration and outrage, Ms. M. simply made it right. (It’s one of very many reasons I am so grateful she is working with Nik!)
When the announcer called Nik up to get his ribbon, Nik was all smiles and fist-bumps with the police officer who gave him his ribbon. I, on the other hand was all sniffles and quiet tears. The oversight in such a setting where it’s all about inclusion, left me rattled.
My boy works so hard to make his way in a world which neither understands him nor fully embraces him for how he is right here, right now. As far as I’m concerned, he deserves a ribbon every day.
Emotional crisis averted, we made our way to the opposite end of the bowling alley to find Nik’s teacher and the three classmates who had participated in a different division. It was like watching a family reunion; Nik suddenly sprang to life and bubbled over with joy at seeing his friends. They were also over stimulated and tired from the long morning. One of the boys can get very physical when he is in that state and I worried when Nik grabbed his hands to start to clap with him. I admonished Nik to use his “words” (his speech device) to ask the boy if he wanted to clap.
The way Nik spelled everything out was as if it were one long, breathless request. “Marcusclapplease.” Marcus has always made me slightly uncomfortable because he is so much older and bigger than Nik and has no concept of personal space. He also has a very flat affect so it’s hard to tell what he’s feeling or thinking at any moment. I watched, somewhat leery, as he put his hands up for Nik to clap.
Marcus pulled his hands away very suddenly and mumbled “clap done.” Nik persisted and Marcus tensed. I knew Ms. M and Ms. C (the teacher) were watching and ready to intervene, yet they didn’t seem at all anxious about what Marcus might do. Marcus reached out and put both of his hands on Nik’s shoulders and slowly pulled him to his chest. I held my breath as I watched in awe; Marcus slowly bent his head down and, with a tenderness I could not have imagined he could express, kissed the top of Nik’s head in the most affectionate and brotherly gesture I have ever seen. So simple, yet so profound.
The sting of the three-plus difficult hours which had come before this moment suddenly melted away. This…connection; this was the real prize for my son who gives his all every single day. This was what he came for.