Accessibility, Cerebral Palsy, Love, Music, Our Son, Parenthood, Photos, Sebastian's Achievements, Technology, Toronto

No Autographs Please

Yesterday was a big day. For Sebastian. For me.

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My stomach was in knots as I drove to Sebastian’s school for a lunch time Parent Council meeting that I’d be leaving early to pick up Sebastian. He was invited to perform the VMI (virtual music instrument – drums) with his music therapy teacher and another young lady. They would perform during an important event in front of at least 50 people. Other classes from Sebastian’s school as well as therapists, staff, and clients at the hospital would be in the audience. Gord Bamford, a Canadian country music star, was presenting the hospital with a cheque for $10,000 for the Music and Arts department. He would also sing a few songs.

Sebastian was so happy to see me when I picked him up. He was very excited to perform. Once we entered the atrium he was a bit overwhelmed by the busyness and sudden attention. He loves attention but was having trouble placing everyone. Once the clapping and loud voices on the mic started it got a bit much for him. I knew he might have air in is tummy since he had recently finished lunch but there wasn’t much I could do with Lula in the carrier. His music teacher was amazing. She talked with him and did some warm up singing. We went for a little walk where we could still hear the music but it wasn’t too loud. (Lula signed and said ‘more’ after each song). We spoke to a few friends on the way and Sebastian gained the new nickname ‘Animal’ (from The Muppets). And then it was time for Sebastian to take the stage.

I had my phone ready to take a video and camera taking photos. Tallula was against my chest in the carrier because it was her naptime and she was over tired. She was also impossible to keep in one place and for that I am thankful, but I needed to know that she wasn’t going to wander off while Sebastian was rockin’ the drums on stage.

The way to VMI works: it connects virtually with Sebastian’s limbs. He can see himself on the big computer screen with different coloured shapes on his hands, arms, legs and sometimes feet which are the ‘drums’. When he moves with intention the drum beat sounds. So his teacher sings a beautiful and funny song which Sebastian knows and loves and when she pauses he beats the drum using his body. Sometimes he vocalizes (sings) too. He is so alive when he’s playing music. He loves listening and dancing to music but when he’s playing with his teacher his whole self just opens up and so much happiness and love pours out into the world around him. As he played I fought back tears of joy and love and pride.

Afterwards there was no sign of the discomfort (at the loud clapping, etc.). Sebastian seemed to be in his element. He was happy to have folks come up and praise his performance after watching Gord Bamford give it a try.

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Sebastian, you rock the party.

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