So, in case this isn’t super clear in other universes, families who have developmentally disabled kids have to ask for everything.
We ask that our children not be on the school bus longer than nondisabled kids. We ask that our sons and daughters be allowed to try the same sports, experience the same joys, have the same social opportunities as those that kids who weren’t born with whatever disorder they have.
When asking nicely doesn’t work, there’s legal action involved. You may have noticed news stories about lawsuits here, there and everywhere.
Seriously, we even had to ask the government that our children be allowed to save up money to cover housing, education and transportation expenses. You know, like most of the rest of us do without anyone’s permission.
The ABLE Act, championed by U.S. Rep. Cathy McMorris Rodgers, R-Wash., — a member of “special needs” parents club — allows for tax-free savings accounts that allows developmentally disabled people to stash away money for their education and care without dinging their government benefits.
We ask that our kids be given the chance to work real jobs, as much as possible. Not only to “pay their way,” but for all the other things having a job brings. New skills, confidence, pride and a chance to be a player on the main stage of a community.
In my own family, Martha Stewart Jr.’s new job as a prep cook for a downtown Walla Walla restaurant has been cause for rejoicing. A business owner stepped up to take a chance on her, and Martha has been working hard to reward that decision.
We don’t do all this requesting to be greedy, or because we think our kids are more entitled than your kids, but because it’s the only way we can try to balance a really wobbly world for our disabled family members.
Last month, however, Whitman College gave us something we didn’t ask for. It gave us 2016 graduate Jeremy Nolan.
Jeremy, 22, arrived at Whitman from Vista, Calif., looking for a place not too far from, and definitely not too close to, home.
Jeremy wanted a small school that would allow him to interact with the surrounding community as he worked toward a pre-med degree.
That was his plan. Attend Whitman, do the requisite chemistry and biology classes and head back out to medical school.
But a couple of things happened. First, the science classes turned out not to be Jeremy’s cup of tea. Second, he took that community engagement thing seriously and got involved in Whitman Buddies.
The Buddies program runs at both Whitman and Walla Walla University, and pairs developmentally disabled (we have GOT to find a more fitting label) adults with college students during the school year They meet up in groups about once a month and enjoy activities including karaoke, treasure hunts, dances and art projects.
Jeremy had packed many years of experience of working with kids with disabilities in his college kit. In fifth grade his best friend was Jerry, a boy living with muscular dystrophy. Jerry sat on the sidelines (‘scuse me while I seethe for a moment on Jerry’s behalf) during recess and it was Jeremy who stayed with him. Happily so.
That, Jeremy explained, put him on the path for Buddies and beyond.
In Walla Walla, the more the young man worked with kids like mine, the more he began realizing being a doctor wasn’t his jam.
“You can learn about any disability in a classroom, but having a chance to work with and interact with the disabled, it humanizes it. And gives you a knowledge of what the families go through,” Jeremy said.
That right there is going to get this guy cookies in the mail from parents for the rest of his life.
In Whitman Buddies, Jeremy was first paired with a young man named Jacob Ruchart. Anyone who knows Jacob — his local fan base is wide — knows he has a “large personality,” as Jeremy termed it. And that comes with challenges, allowing Jeremy to hone his nascent skills.
And fun, he added. “He just wins over your heart,” Jeremy said of his Buddy. “He had a big impact on me wanting to work with developmentally disabled kids.”
Jeremy became the Buddies leader the next year, allowing him to see beyond the immediate gratification of making a guy like Jacob happy for an afternoon.
The job requires leadership, recruiting and vetting skills, and an ability to work with college and agency officials.
And that led Jeremy to apply for a para-educator job with the Walla Walla School District. He landed in the autism classroom at Edison Elementary, where his perspective widened even more.
And thus Jeremy graduated from Whitman College on May 21, not as a pre-med student, but with a taste for education, like his teacher parents. And he took Jacob bowling one more time that same weekend.
Jeremy soon heads to Mexico for a year on a Fulbright Scholarship. There he’ll teach English 25 hours a week. In the other 15 work hours, Jeremy will set up a Buddies-type program for families there who have fewer resources than Americans do and perhaps don’t know what they could be asking for.
The stigma of having a family member with a developmental disability is strong in Mexico — “It’s my hope I can start to challenge that stigma,” Jeremy said.
Kids like ours just got a fighter for the cause. Jeremy is going to help unwobble their worlds, however he can.
We didn’t even have to ask.