Supplied by Dr. Sheryl R. Grassie
In the winter of 2004, when my son Seth (who has severe autism) was just six years old, I began to realize that his living at home was not a long-term viability. Meeting his needs was creating an almost unbearable stress level for the rest of the family as we constantly lived with violent eruptions, very little sleep and the extreme caretaking necessary to ensure Seth’s safety. In addition, it became clear that our home environment was not suited for Seth’s autism needs. As a family we worked hard to keep our home life quiet, routine and predictable, but to manage autism everything needs to be kept EXTREMELY quiet, routine and predictable in an almost militaristic fashion. This is nearly impossible within the average household, especially if there are other “typical” children in the family.
Further, I noticed that the natural noise and unpredictability of home life continually exacerbated Seth’s condition, causing him severe pain and constant upset. A doorbell ringing, a dog barking, airplanes, leaf blowers and household appliances would set him off, and try as I might I could not adequately control the environment. I began to question why there wasn’t a setting that worked to control these factors, a more autism friendly environment where my son wouldn’t suffer?
I began to investigate the availability of out-of-home options for children with severe disabilities. What I found was a current cultural backlash predicated on the deinstitutionalization process of the 1970’s that has left many states, including Minnesota, with very few out-of-home placement options. Deinstitutionalization, coupled with legal mandates for mainstreaming children with disabilities such as Least Restrictive Environment (LRE), have set precedents for limiting out-of-home residential options. The current acceptable model for out-of-home placement is a four-person group home and these are very limited in availability. Further, the four-person group home very closely mimics “normal” home life, which does not adequately service severe autism.
During my quest I have researched and found a number of facilities around the country that service this targeted population. On September 11, 2006, I sent my son to live at the closest center, Chileda, in LaCrosse, Wisc. Chileda (http://www.chileda.org) is comparable to many other centers around the country with residences, a school and recreational facilities all housed on a single campus that limit the resident’s transitions into the community. This campus model maintains a structured sensory environment to accommodate severe autism. This seemed ideal to me, with one exception, it was three hours away. I wanted a Chileda close to home.
So began the work of understanding legislation, looking at funding, finding the support of various social service providers and non-profits and contacting legislators. As part of this process I returned to school and completed a doctoral degree in Educational Leadership with a focus on severe autism. During my research process I met a number of other families with children with severe autism who were struggling with the same concerns over appropriate housing as I was. A core group coalesced in March of 2009, and formed The End of the Spectrum, a non-profit organization with the goal of researching and developing appropriate residential housing. Housing that could supportively maintain our children long term, something that could meet the environmental and sensory needs of severe autism and other severe developmental disabilities.