Meet Casey Bowler, the mayor of Rainier CrossFit.
Casey was born with Fragile X. Fragile X affects 1 in 4,000 males and 1 in 8,000 females and is inherited. It occurs when a single gene, FMR1, the “long arm” of the X chromosome, shuts down and fails to produce a protein called FMRP, which is vital to brain development. You can read more about Fragile X and support organizations like FRAXA here.
I started going to Rainier CrossFit in 2013 and it was one of the best decisions of my life. It was within the walls of my gym that I met then 13 year old Casey. It’s also where I met his parents, Kurtis and Laurie Bowler, who also happened to own the gym. I was incredibly intimidated trying out a CrossFit gym, but by day two, when Kurtis and Laurie remembered my name, I knew I was home.
Casey is now 17 and I have learned a lot about Fragile X over the past four years. Fragile X encompasses so much more than the science behind chromosomes failing to produce proteins. It’s through Laurie sharing her story of being a mom of a child with a developmental delay that you truly learn about Fragile X. And it’s through Laurie that I learned about the limitations that Casey will face in the future – limitations that don’t need to exist.
If you are a parent, what do you dream about for your children’s future? Do you imagine sitting in the audience at their high school or college graduation, cheering them on as they cross the stage? Do you think about shedding tears at their wedding? Do you imagine the thrill of the birth of your first grandchild? Do you think about your children taking care of you when you are no longer able to care for yourself?
What do you do dream about if you have a child with Fragile X or another developmental disability? Laurie has so many dreams for Casey, which she discusses in the Rainier CrossFit blog.
My dreams for Casey are the same as every other parent– we want our young adults to have friends who are good influences, meaningful employment, pride in their work, achievement, success, goals, hope, fun, and community. We want them to belong and flourish and be fulfilled. What I want for Casey is no different than what you want for your kids.
Kurtis and Laurie can keep Casey in school until he is 22 years old. Once he turns 22, Casey will be eligible for roughly 10 hours of state funded support, with about four of those hours being administrative time with a “job coach,” leaving approximately six hours a week to….do….something. Like so many other parents of children with developmental disabilities know, children like Casey need and crave routine, and six hours of something each week still leaves 34 more hours in a standard work week to find something to do. Unfortunately, Casey will not be able to independently do things like collect grocery carts, stock shelves, answer phones or file papers.
…what awaits Casey on his 22nd birthday is isolation. He will have spent upwards of 19 years in a self contained classroom (because as loud as we demand mainstream education it doesn’t happen). He’ll eat some cake and then *poof* his transportation, his place, his friends, his job, and his community will dissolve. He’ll be left at home, in his room, with his iPad, and nothing else.
A little over a year ago, Laurie read an article in Rolling Stone, called Luke’s Best Chance: One Man’s Fight for his Autistic Son.
His son is just a little older than Casey, and it was like we were sharing the same, rarely traveled, very bumpy road. Paul Solotaroff’s writing is dense and chewy, I need to steel myself with a full glass of wine and a new box of Kleenex before I dive into one of his pieces. This one was no different, but after I finished I looked at Kurtis and said, “I want to buy a farm.”
In November 2016, Kurtis and Laurie traveled from Washington to Massachusetts to visit Gateway Farm, a piece of The Shared Living Collaborative. For two days, they spent time walking through the barns, fields, workshops and dance studios. They met dozens of men and women, all of whom were Casey in some way and all who had been matched with job tasks that not only fit their ability but also provided a challenge. These individuals were surrounded by friends, getting paid for the work they were doing and understanding the link between their effort and their paycheck. This farm is a place where society’s invisible are now visible. This farm gave them the routine and structure needed to succeed each day. For parents who may not have been able to dream for their children – it provided a future.
There was just one problem. The Shared Living Collaborative is in Massachusetts and the Bowlers live in Washington. Well, as Paul Solotaroff’s words spoke to Laurie, it was time to buy a farm. I’ve known Laurie for four years now, and when she says something, she makes it happen.
Washington, say hello to The NorthStar Neighborhood. Welcome to the farm!
The NorthStar Neighborhood will be a place of meaningful employment, pride, friendship, and community for intellectually and developmentally disabled adults in the east Pierce County region. The goal of “The Farm” is to employ a workforce not otherwise employed by area businesses, develop skills associated with agriculture, provide meaningful and fulfilling work experiences, and to provide social interaction and community with peers in a supported setting.
The NorthStar Neighborhood is in the process of seeking capital to buy a farm and begin the process of building the dream. If you are interested in getting involved and being a part of this incredible movement you can in two ways:
Buy the Farm Event
2K, 5K or 10 mile run through the beautiful trails of the Tehaleh neighborhood in Bonney Lake
You can register for the Buy the Farm event through Eventbrite here.
Go Fund Me
Help The NorthStar Neighborhood raise $150,000 in capital to begin the process of buying the farm.
You can donate money here.
Awesome job sharing Casey’s story!!