It has been difficult to find families who want to work on a new revolutionary way to provide a full life for their adult children with autism, perhaps because we have been looking for adults that are just beginning the transition process. The children are still in school and the parents are satisfied with what they are doing and receiving for services; having worked to get it right, they are making progress and perhaps even seeing the positive changes that can come with maturity and stability.
The nightmare experience of seeing all that progress disappear into the maw that is adult services has not yet occurred.
Last week I attended an invigorating “brainstorming” session about planning the future of the autism programming for the new agency that I am working with for Lily’s new life. I was amazed to be invited and even more astounded that “Families” was the first on everyone’s list of values. So often in my three and a half-year experience with the adult system the parents are ignored or “yessed” in meetings. The attitude is one of “us” and “them”. How refreshing and encouraging to meet this very sincere group that I hope soon to be an even more active member of.
Today, looking out over the shining blue of the bay with the puffy clouds and the dappled sand, I wonder whether the first English, French and Viking settlers to these shores thought about the physical beauty surrounding them as they pulled in their nets and laid out the fish to dry in the sun.
Were they too busy working to survive to be awestruck by the colors of the sunrise after so many days of rain and fog?
Did the wildflowers blowing in the breeze ease the ache of their backs as they gathered wood for the winter and plowed and seeded the garden?
Here in the Northeastern United States, with long, cold winters of bleak landscape and hungry wildlife, we treasure the few short weeks of spring and summer, hoarding days spent fishing, gardening, hiking and sailing, or perhaps simply sitting on a rock, gazing out at the beauty.
We know what man has done to nature as well; we have the contrast of the cities and industrial pollution versus the sea, woods and farms and appreciate all the more what we still have seeing it next to the examples of destruction.
The First People, or Native Americans or Indians or whatever you wish to call them in your culture, appreciated the sustaining value of the natural world around them and protecting it has prominence in their religions and way of life. They knew this truth without need to compare with the absence of nature; it puzzles me sometimes why we seem to need to miss something after it is already gone.
Missing our school experience that treated our daughter as a whole person, and having the experience of seeing her regress under a program that sees her as flawed and broken, to be managed like unwanted refuse, we have become acutely aware of the destruction around us and wish to reclaim and rebuild her world to more closely resemble what we had before.
We will build a new world based on the rights that Americans hold to be self-evident, a revolutionary new world, dedicated to the rights of ALL people to happiness and freedom.
Perhaps we need to look for our families amongst those who have seen the future, instead of those who are have not yet experienced the destruction.