Last week, Kurtis, Sam, and I were in Boston looking at a farm.
No, we’re not moving. (But that’s the first question everyone asks.)
We were there to look at Gateway Farm, a piece of The Shared Living Collaborative. Gateway Farm is a horse farm, with chickens, ducks, goats, miniature donkeys and a pony or two. And it’s entire workforce is adults with developmental disabilities. Can you start to guess where I’m going with this?
Casey was born in 2000. Within a few days, we knew something was up. Newborns are supposed to love being swaddled, held, and are supposed to lock eyes with you and make you fall into all sorts of hormonal induced gushy over the top infatuation. We got nuthin’. We got eye contact avoidance, screaming if you swaddled him, arching backwards if you held him, couldn’t suck to save his life (quite literally). It was 3 years before we had a Fragile X diagnosis.
On my very first day as a mom, I failed Casey for first time. I couldn’t feed him. I couldn’t hold him. I couldn’t comfort him, I couldn’t meet his needs. I have 17 years of failure under my belt, which is why “failing” isn’t so scary to me. I am a practiced professional. I was also the first in a long line. Therapists have failed him. His schools have failed him. So much failure.
But Casey has always been my “why”. He’s the reason for most of what I do. There isn’t a day that goes by where we don’t ask “What’s the best thing for Casey?” You could call him my guidance system. My true north. My Polaris.
Just over a year ago, I read an article in Rolling Stone called Luke’s Best Chance: One Man’s Fight for his Autistic Son. It was the latest installment following a dad of an son with Fragile X. His first article came out in 2003, shortly after Casey was diagnosed. 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 said “I want to buy a farm”. I forwarded the article to Kurtis, who managed it a little drier-eyed than I did, and he agreed “This does make you want to buy a farm” We laughed at an otherwise ludicrous idea, finished our wine, and went on about being CrossFit gym owners.
I’ve been a fan of FRAXA since Casey’s diagnosis. When the results of genetic testing were in, the developmental pediatrician gave us nothing, the internet in it’s infancy didn’t have much more information. There were two organizations I could call, and the first one offered to “send me some brochures”. I called the second one, and a lady answered the phone, her name was Katie, and she was the mom of a son with Fragile X and I don’t remember exactly what she said that day but I recall hanging up with a sense that the grey cloud surrounding me might just be letting in a little more light.
10 years of events have allowed us to send over $125,000 to Katie’s Foundation, FRAXA, in our pursuit of a cure for Fragile X. So imagine my surprise when she happened to mention the very farm I’d read about was the location of her son’s day program.
I’m pretty hard-headed but I heard the universe loud and clear on this one. To many arrows pointing all to the same place, and Casey leading the way. I needed to visit that farm.
Part of the problem is this: Casey is part of the school district until he’s 22. Once he reaches that milestone, there’s nothing for him. If, by some chance at 22 he’s far more capable than he is now, he’d be eligible for some job training and maybe some employment. Right now, Casey spends 32.5 hours a week in school-related activities- be it on the bus, in the classroom, shredding papers, or baking cookies. Once he hits 22, he’s eligible for 10 hours of state funded support – but up to 4 of those hours are admin time for his “job coach” so he may get 6 hours a week of something. Six hours a week isn’t enough to establish the routine that Casey craves, needs, or is required for him to be successful. He cannot independently collect grocery carts at Fred Meyer. He cannot stock shelves at Costco. He cannot answer phones or file papers in an office. There are thousands of disabled adults who can, and there are job placement services to help them find just the right fit. Casey is lower functioning and will need more help than what is currently offered.
So right now, 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.
I have spent the better part of this year trying to, as best I can, normalize Casey’s high school experience. That means I take him to school and drop him off at the front doors. He’s free to meander to class as quickly or as slowly as he chooses. We took him off his beloved bus because the routine wasn’t consistent enough for him to succeed. Everyday, he can (and does) choose to buy his lunch with hundreds of other kids. He swims at the Y. I drag him to the outlet stores and make him try on new shoes. He asks for pizza everyday. So why should I fight so hard for a “normal” high school experience if all I have to look forward to is anything but normal the day after his 22nd birthday? 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. His will look different, though. Because I will engineer it, shape it, micromanage it, and construct it.
Remember I have failed before. And failure can do one of two things — crush us or turn us into mama bear. Welcome to my den.
So back to Boston – we step out of the car and enter an old farmhouse turned break room/ conference room/ offices. We spend two days walking through barns and fields and workshops and dance studios. We meet dozens of men and women happily engaged in various work and social activities. Each of these ‘guys’ is a Casey in a way. Some disability makes their life far harder than mine or yours, but each individual has been matched with a series of job tasks that fit yet challenge their abilities. They are surrounded by friends. They complain when it’s their day to clean the bathroom. The get paid for their work, and they understand the link between effort and their paycheck. They look forward to Wednesday nights when the social activities range from bowling to dancing to movies. Some of them are dating. All of them are smiling.
We visited the Shared Living Collaborative to get a better idea of what we’d like to build here. To get ideas on exactly what we will have in place for Casey the day after his 22nd birthday. There currently aren’t any day programs like this around here. There are programs that share the idea, but they are residential, meaning they provide housing AND daily activities for the residents. For our guys who live at home (or in adult family homes (think adult foster care) their daily activities are entirely the responsibility of their family, host or biological. The lack of day programs is at the top of a lot of to-do lists. Our DDA knows we’re lacking. Parents are acutely aware of the need. Case workers and teachers are sickened at the thought of isolation that awaits our kids.
So here’s where were at. We are looking for a farm to buy. We need investors and grants and loans (and maybe the lottery) to make it happen. We need to incorporate a business and then file for non-profit status. We will need to gather parents and lobby Olympia to fund our program. We will need to convince the state powers that be that a place where a group of developmentally disabled adults can gather and work together is a GOOD thing because they don’t currently believe it, provide it, or fund it. We need to convince people of our mission. To provide meaningful employment, social opportunities, and community for our adults with disabilities. To combat isolation.
We need a place.
We need funding.
We need the right people on our side.
I’m certain I will fail again. Probably more times than I can count. But I will succeed, too. Because Casey depends on it.
Welcome to the NorthStar Neighborhood.