Learning the Ben Language
If you had asked me 15 years ago how I would feel about putting my son Ben in adult foster care, I would have said, positively, “No Way!” Ten years ago, when that decision became a necessity, I just cried. How would the staff know Ben's needs? His speech is almost non-existent, and his needs are so great. Who could ever take care of him like we do?
Today, I marvel at the freedom Ben enjoys and the incredible supports that make his adult life full of accomplishments, relationships, and meaning. He has many choices. I’ve watched the staff’s respect for Ben, as an adult, and have appreciated all the ways they make his life orderly and rewarding. Because of his increasingly dangerous behaviors, a behavioral home became the only option for his care. I would hardly know behavioral homes exist if it weren’t for Ben. Because of Ben’s diagnosis and needs, I’ve been privileged to meet the best of people—quiet, servant-hearted people with a passion and a need for employment—who make Ben’s life great. Now, 10 years after placement, I have to say what a tremendous blessing MOKA, the non–profit agency that operates Ben’s home, has been to our family, and primarily to Ben. It takes so many people to make one MOKA behavioral home run efficiently: a house manager, first, second, and third shift house aides who wash bodies, dishes, and clothes, and keep track of doctors, school, work, and haircuts—even noting which hairdresser is best.
These professionals spend time listening to the days’ stories, distracting residents from negative behaviors (learning and employing Gentle Teaching techniques), encouraging healthy decisions, planning outings, and providing a safe, homey environment for my son, not to mention so many others in West Michigan. I traveled around the country for seven years in my work, having many opportunities to meet with mothers of special needs individuals, in one-on-one settings. Michigan’s service to developmentally delayed or physically challenged individuals outshines most of the states in many services. That speaks to the caliber of people at MOKA, the faith and hard work that planned and grew such organizations, and the generosity that keeps caring corporations and foundations like MOKA operating today.
Eric (Ben’s home manager) is a “hands on” manager, spending time with the men while making sure staff has the freedom to do special things with the guys. He even includes staff and their families on special occasions. Eric always refers to the home as “their home." He works at making it “home” and keeps it running efficiently. There’s usually extra money in Ben’s account. He receives $44/month spending money from his SSI payment for special things that I know Ben would enjoy, and Eric and his team allow lots of room for personal preferences. If it’s important to Ben, they will do whatever they can to facilitate it: winter bowling outings, shopping, worship experiences, picking out a favorite video, placing a fire pit in the back yard, juggling work relationships and schedules, making sure TVs are working—all these things so that Ben and the other men keep making choices, building relationships, sharing places, developing skills, and contributing to the community they live in.
Ben and his housemates have gone camping every year, but this year was a special Whitecaps game instead. They spent a night at a hotel, checking out the Jazz Festival and arts festival the next day. I receive warm assurances of the staff’s affection for Ben; some come in the form of a text message, including a picture of Ben at a special outing, or playing with puppies, or just Ben—smiling. That extra thoughtfulness means the difference between anxiety and joy. I could not have imagined such great relationships—for Ben or for me, his mom. After watching Eric manage the resources at Ben’s home for 10 years, I have noticed that he takes great pride in strict, daily adherence to the budget. But I’m impressed with the quality of meals and events. He leads his team in being careful with the resources they receive, recognizing it as a trust from a generous community. I’ve come to pick up Ben on occasion and wished I could stay for supper when I saw what they were serving!
Ben has to have specially prepared food, and the team does a good job of making it palatable… and consistent. Ben is reminded to spend time on his stationary bike or walk around the block. All of the staff is onboard with learning new signs, keeping Ben learning, and helping him communicate. The team helps him through his bipolar outbursts and use Gentle Teaching therapy in response to his fits to help calm Ben. Staff prioritizes the personal program goals for each man, fitting them into practical areas at home for continued emotional, spiritual, mental, and physical health.
Eric has hired incredibly loyal staff—persons of quality and longevity—who respect and come to love the individuals they serve. I really didn’t believe anyone would be able to understand Ben’s needs because he’s severely developmentally delayed, with very little speech. Most of his communication is accomplished through his form of signing and gestures to get his point across. One of Eric’s comments at a person-centered planning meeting was a verbal reaffirmation of something I’ve witnessed; he said he’d added a “new” language to his resume. The “Ben” language! He and Ben’s staff truly understand what he needs, and that has helped me relax with their care. One time, when Ben’s home still housed six men, Eric told me he never takes all six men out in the community at once—out of respect for them. Eric does not let them become a spectacle—he treats them with dignity. He is always conscious of enhancing their reputation in the community, and I fully trust that they’ll only take Ben places where it’s safe for him and where he is comfortable. I can think of one time when that was not the case, and it was remedied immediately. That kind of care and respect for Ben earns our trust as parents.
Witnessing the camaraderie, sibling rivalries, and tender moments between staff and the men is so validating. It was the right—the very best—move for Ben. Seeing their very relaxed action photos framed and on the walls reminds me that Ben is an adult now … that he has his job, his home, his work, and his life to live. Thanks to people who believe in the MOKA philosophy of freedom, my husband and I and our other children are gratefully living our own lives as well!