As ‘we’ move ever so clearly along a path designed to maximize Ben’s potential as an independent member of our community, the places of agreeing to disagree become more and more apparent. The ‘we’ I refer to is the collective amalgam of all the voices and all the forces that contribute to this design, ‘we’ his parents, ‘we’ his peers and community, and ‘we’ the educational institutions responsible for providing a free appropriate public education in the least restrictive setting. Which is of course where the rubber hits the road of any path chosen for him at this particular time in his development. It is about charting a course that Ben can effectively engage his wheels with and truly move forward in a way that serves his right to be an independent and social being in the world. To this, laws have been created to provide ‘special education’ for persons like Ben. The public educational institutions of this country have created spaces within their systems to accommodate this and for the most part in good faith, do the best they can. And also like all public institutions that must serve a wide spectrum of constituents, educational systems get created that simply cannot serve the needs of all, and those in special education are no exception….
Today, I stand before a fork in the road. I watch my son in his dawning self awareness and in the emergence of an intelligent and motivated interest in being part of something bigger than himself. He demonstrates a capability and willingness to engage and excel not unlike his typically developing peers, and as he has consistently done through his involvement and advancement through sports all these years. But the school system, in my eyes, has failed him here. He simply has not excelled educationally given the system that is in place, when all the signs of promise for him to do so were there in elementary school. We have always advocated for Ben to have an opportunity to learn alongside all his peers, understanding that at a young age, he was already demonstrating an ability to be socially engaged and motivated which is undoubtably the strongest partner in public school education. The irony is that we live in a university town that prides itself on being all about education first. And so the question becomes, education for who? Where and how does Ben get to be the hugely creative and intelligent social being that he is within this system? Where does that really get to happen in a large regional school that can at best either offer him a fragmented day to day experience by ‘inclusion’, or a closed and limited single classroom experience with peers that may not have the same level of skills and motivation? It is a system that works very well for so many, but not for everyone, and certainly not for Ben. When a large regional system simply does not have the resources to provide the kind of coordination necessary for someone with Ben’s significant disabilities, then either scenario becomes inappropriate and restrictive, and simply cannot fulfill spirit and intent of the law that mandates appropriate education in a least restrictive setting for all students.
I am cursed with seeing all sides of this very big issue and so standing at the fork in the road is simply heartbreaking right now. It ends up being all about who will pay and who will be responsible. There is nothing fair about this fight for either party involved, because neither one of us want to be here, but we are here nonetheless. As his mother and advocate, I see the out of district placement to a full immersion program I am advocating for as the only way for Ben to have a chance at engaging his powerful wheels on a more appropriate path in a least restrictive setting of true peers. And in doing so the huge gap between the ways of perceiving ‘education for who? gets exposed…
I am trying to find a way to see this in a larger context. The image that comes to me is of a wonderful sculpture just outside of Red Hook & Rhinebeck New York where route 199 diverges with route 308.
It is a place we always smile at when we get there, at the obviously literal, blatantly larger than life size fork stuck in the ground at the place that the path divides. I think of all the times I choose one way to go, which brings me around to the Kingston bridge and back on my way. And then how sometimes I choose the other way and it also brings me around to the Kingston bridge and back on my way. Two different ways to get to the same place I am imagining. I would be remiss if I did not consider that this might be a possibility for Ben. I know I need to trust that whatever path Ben lands on, it will be the one that is supposed to take him to his imagined future. ..
And…I still have to choose which way appears to be obviously best for him now. Because now is all we have….