Our son, Kevin’s, education entitlement is over. Now what do we do?? As Kevin’s parents, the “what do we do?” question was thunderous and unrelenting – and we faced it this year.
Most of the year, we were frustrated and overwhelmed. The fact that all the other parents with special needs kids who were “graduating” were too – was not comforting. Our frustration was born out of attending informational seminars put on by the state on “aging out.” The result of the seminars? The unrelenting thoughts multiplied: “how could we continue to work to pay the bills with nothing meaningful for Kevin to do?” “How could Kevin have something he enjoyed given his autism?” The worries haunted us as we sought ‘something’ for Kevin post graduation.
Yes, there was a modicum of support. And no, it wasn’t easy to get the support. Conditions needed to be met to access that support, reams of paperwork needed filling out to get the small monthly budget to help with our son’s next phase of life.
The process in and of itself was as full-time job—and we both worked full-time!
Often we were given contradictory information about the process itself, and honestly it felt like we were being pushed off a cliff, left to flounder and figure it out—some how, some way.
Adding to the foggy landscape of aging out: it wasn’t the school districts job to assist, give pointers or advise us. Kevin’s brother went off to college and new adventures but we feared Kevin wouldn’t get to realize his opportunity for growth.
It was surreal attending our son’s exit IEP meeting. We spent 15 years planning his school years and we were now faced with “what’s next?” We realized for years we had an intense focus on school, and now Kevin had his entire life to live! We listened carefully to the teachers/counselors at the exit IEP as they told us of Kevin’s accomplishments: the skills he’s acquired and how well he’s done over the years. However, none of Kevin’s progress changed his autism. He couldn’t do things without supervision.
We had visited adult day programs. We couldn’t imagine any benefit to Kevin. Yes, he’d be ‘occupied’ with something, but that wasn’t the same as being offered enrichment. Most troubling to us was the isolation and lack of community interaction. Yet, the haunting thought continued: “how are we going to be able to work and pay the bills?”
The knots in our stomachs grew during the IEP meeting as the school staff also spoke of Kevin’s deficits. Kevin’s skills and independence are not sufficient to work (even at disability friendly businesses) and he is too functional to be sitting in a workshop adult day program all day.
We did not want the “adult day program” for Kevin. Kevin would be bored and unwanted behaviors would be the result.
A friend mentioned Ability 2 Work/Baker’s Treat to us. She sent us a notice about a talk Karen Monroy was giving at the café on “aging-out” and how to stay sane. It sounded too good to be true. We went. We listened to a wide-ranging presentation by Karen. That nagging feeling we had that the information we were being provided by the seminars wasn’t everything we needed to know crystalized.
We left that night feeling validated about being scared about what we faced. We were not the only ones in these shoes. These were the same shoes Karen was in with her son just the year before. She talked about the unstable support system: it’s history of instability and changes and encouraged us to make our own way and be independent as possible of ‘the system.’ She said that essentially we were on a brand new frontier for the differently-abled (we loved that term!) – we were either going to find a situation where Kevin could thrive or we were going to settle for Kevin simply surviving. We didn’t want to settle, Kevin deserves better – so we became pioneers.
Karen certainly considered herself a pioneer. It had never occurred to us we needed to become pioneers—but it was clear now. After viewing the adult day programs offerings, it became so clear—we wanted Kevin to thrive, not survive.
Relief washed over us as we began to see that there were other possibilities than the “programs” we saw.
For the first time in years the dread we felt at the prospect of Kevin graduating, began to morph into excitement. Kevin would live and work IN THE COMMUNITY. He would be included. His contribution would be valued and he would continue to be supported in the social, emotional, behavioral and technical skills to be an adult, and to be an employee.
Since that night’s presentation, we investigated and researched Ability 2 Work. /Baker’s Treat. There is nothing like it, but for us we had other considerations.
It’s not close to our home, there are time commitments to the endeavor we’d have to meet and we would have to rearrange our work schedules to enroll Kevin. OK? So what? What is that compared to Kevin having the opportunity to thrive?
Ability 2 Work/Baker’s Treat is something different and wonderful and it’s what we want for Kevin. Knowing he’d be in a place getting real job training along with behavioral, social and emotional support is a dream come true-one we didn’t even know was possible. We decided it was the answer to “what’s next.”
Kevin proudly puts on his “uniform” and is very happy to go to his job at Ability 2 Work/Baker’s Treat. He has already made progress on long entrenched behaviors: impulses, voice control, expression of frustrations—and we get to see what he does while there! Each week we are sent video segments of his day. It used to be we’d ask, “what did you do today Kevin?” and Kevin would say, “I don’t know.” Interaction is difficult for Kevin like it is for so many with autism. Not only is Ability 2 Work /Baker’s Treat the right choice for Kevin, it’s the thriving choice and it gives us the ability to know what skill sets Kevin is working on so we can continue to expand them at home and interact with him in meaningful ways.
For any parent of a differently-abled child who feels overwhelmed and frustrated like we did, we’d advise you to become a pioneer. Your life will change when your child ages out—but it can be exciting and beneficial change.