When you have a child with a disability, you quickly realize the world is not built for us all. This is especially true for playgrounds—the everyday, yet magical place that is supposed to bring joy and foster imagination. So I have to add "a playground Parker can actually play on" to my growing list of challenges I never imagined having before Parker. The List is exhausting. For example:
Fighting insurance to cover Parker's medical procedures and equipment is exhausting.
Taking Parker to a store or restaurant or park or stadium or pretty much anywhere that isn't Parker-friendly is exhausting.
Trying to find before and after school care for Parker is not only exhausting, it's impossible.
Pouring my energy into KIF1A.ORG to support our growing community and advance critical research to discover treatment for Parker and the other 200 kids (and even a few adults) living with the same rare disorder is exhausting.
Similar to my last post, I'm not telling you this to complain or be Debbie Downer. I'm actually a stubbornly optimistic person. I'm sharing an excerpt from The List so you understand just how shocked and grateful I am to have a whole community take on a major problem on The List.
Before I continue, I have to tell you about Mr. Nick. This is Mr. Nick hanging out with Parker (who was camera shy that day):
Mr. Nick is the reason we decided to send Parker to kindergarten this year. With a July birthday and developmental delay, we were planning to have Parker wait a year until he went to "big boy school." But then the school held a meeting to talk with us about our plans for Parker and Mr. Nick was there. Mr. Nick told us about spending time with Parker at his early childhood special education class (as seen in the photo). After hearing a few stories, it is clear that Parker and Mr. Nick had an instant connection. I immediately like Mr. Nick. Then Mr. Nick asked me about Parker's favorite books, took notes, and told me he was going to shop over the summer so his classroom would be stocked with books that Parker enjoyed. At this point it's obvious that Mr. Nick is beyond kind and enjoys being buddies with Parker. But then he starts talking about his vision for Parker, about his teaching style that builds on strengths, about helping Parker break down barriers, about how important it is to create an inclusive culture at school. We were now thrilled to be sending Parker to kindergarten.
Then the unexpected happen. Over the summer, Nick suffered a heart attack and he was gone. Honestly, I barely knew Nick and I was devastated. I was far from the only one. You can read this article to get a glimpse of the impact he had on the people around him.
Nick's family and friends turned their grief into their own relentless drive to realize his dream: build an inclusive playground for children at McBride Elementary. Nick's parents, Gil and Mary Kay, have been incredible advocates and leaders of the #BeLikeNick team. And they've become good buddies with Parker, too. Can't you see the love in these photos??
The team hosted a 5K Fun Run/Walk and a pickleball tournament and has rallied the Springfield community around Nick's dream. Last week, the team announced they met their first big fundraising goal, raising almost $42,000 in just over two months. The playground is estimated to cost at least $350,000. It turns out, building an inclusive world is not only exhausting, it's expensive. A lot of the expense will come from creating a smooth rubber base for the surface of the playground and accessible paths. You simply cannot build an inclusive playground on an island of wood chips or shredded tires! With this accessible design, kids who use wheelchairs or walkers can actually reach and navigate the playground. Regardless of whether or not they walk, run or wheel to the playground, kids of all abilities will be able to play together on ramps, swings, slides and all kinds of inclusive equipment.
I am forever grateful for Nick, the #BeLikeNick team and Springfield community for taking on this challenge and dreaming big. This is not just about an inclusive playground. It's about building a community that embraces children of all abilities and strengths.
To support the #BeLikeNick dream, donate at https://www.supportsps.org/.