Every year I try to do something different. I’ve answered questions. I’ve shared facts, stories and photos. I’ve worn green and asked you to do the same. I’ve celebrated Sebastian and other kids like him. I’ve tried to create an understanding of what cerebral palsy is and what it isn’t. How it affects our lives and how it doesn’t. I’ve asked you what you want to know and possibly shared things that you didn’t.
On March 20th, 2009, I first told the world that Sebastian has cerebral palsy. I used World CP Day as a coming out of sorts. Living oceans from family and friends it was the best way I knew how to reach everyone. Looking back now I realize why I had the whole family dress up in green when we were visiting friends in DC last week. This year the date is March 25, but I was working on memory! And sometimes the days all run together anyways.
Today I just wanted to get everyone dressed and ready for the day. I realized after I sent Seb off on the bus in his super hero blue shirt, that today was the day meant for the CP green. What does it all mean anyways? These awareness days? For me it’s a day to hopefully reach out and help others learn or understand something or even give them the opportunity to ask questions. Since that day in 2009, I’ve set up a Facebook page dedicated to Sebastian’s adventures. I do this to help others see that despite his disability, he engages in the world around him and lives a full and happy life that is not without setbacks and challenges. Individuals with CP range in ability which means the side effects of their CP also range. As with any disability, every individual is unique. It’s a day where I take the time to reflect about how cerebral palsy affects our lives and how it doesn’t. It’s a day when I make the time to at least share a family photo and, if I’m lucky, a couple stories or thoughts to go along with it.
Tallula is starting to understand how her brother enages in the world around him in his own way. She knows that he kicks his legs when he’s excited or upset. She knows that he doesn’t talk like we do but can tell her yes or no using his smile for yes and eyes up for no. She asks him questions and gives him the chance to answer. Like siblings do, she doesn’t always want to share or include him but sometimes she pines for him while he’s still at school and can’t wait to sit with him when he gets home to watch cartoons and eat peanut butter together (late afternoon snack). They adore each other. Sebastian laughs at her dramatic outbursts and we all have dance parties together. Tallula loves to go to soccer with her ‘bruva’ where he kicks the ball while being guided in his walker and others cheer him on as he kicks a goal. Tallula kicks the ball back to her brother or plays with a friend who is there for his sibling. She runs ahead at the playground to play on the things she enjoys, like the slide or in the sandbox, always making new friends. If we are lucky there will be an adapted swing next to a toddler swing so they can swing together.
Recently we were at a park while on holiday in Washington DC. I was holding Sebastian up to walk behind Tallula on the play structure. After we zoomed to the bottom of the slide – Sebastian on my lap and Tallula in a slide next to us – we turned around to head back up the structure when we were stopped by a little girl, Sebastian’s age, also playing. ‘Hi’, she said. I said ‘hi’ back and she said ‘I wasn’t talking to you, I was talking to your son.’ She asked if he could walk and I said ‘with my help’ and she asked if I would help him. ‘Yes!’ I said. She then invited him to play tag, immediately tagging him so he was it. Sebastian was all smiles and even laughing as we raced around. He had the best time ever. She asked why he couldn’t understand her and I told her that he could, but he couldn’t talk like we can. ‘Ok’ she said. She was happy to play with him regardless. It was the first time that a child has approached Sebastian rather then me on his behalf and it was AWESOME.
I want there to be more kids like her. Unafraid to approach Sebastian to say hello and invite him to play. That’s why I tell you all of the things he can do and can understand. That’s why I share his stories, both triumphs and pitfalls. I want you to share them too. Because without kids like Sebastian in your children’s classroom or on the playground, children will take longer to approach kids like him. So, parents, friends, and family have to be an active part of the solution, inclusion.
Wearing green in just a start. Inviting someone with a disability to play, that’s the goal.