If you want to go quickly, go alone. If you want to go far, go together. - African Proverb
June 14, 2021
The next big task for our steering committee (fancy word for incredibly desperate, exhausted parents) was to develop a program philosophy – a plan for happiness. A plan that would not only provide necessities (food, water, shelter, air, etc.), but fulfillment as well. Yes, we set the bar high, but isn’t this what we are all looking for? Fortunately, those who went before us secured avenues to access the necessities. But once you get beyond the necessities, what makes a person happy?
Based on our experiences while raising our children, we all agreed that FULL COMMUNITY INCLUSION was paramount to success. We had seen what this had done for our children in school and throughout their childhoods. The doors it had opened in their lives would not allow us to ignore its importance. Experience in our own lives and the body of research on the subject supported our theory that being a part of the community all day, everyday could not be compromised. Both the community and the individuals with disabilities benefit. While autism is manifest differently in each person, all individuals with autism struggle with communication, social skills and repetitive interests and behaviors. Due to the nature of the disability, isolation is the enemy. In isolation these challenges become insurmountable and dominate life leading to a host of other issues.
Without community interaction, these individuals only have to communicate with a few people. These people learn to “read” the individual the way an old, married couple can understand each other without words. Communication for individuals with autism can be a lot like learning a second language for neurotypical individuals. It is hard, takes a lot of work and if you don’t use it, you lose it. Take away the need for this skill and it will wither and die. Keep the need in place and the skill will continue to slowly grow. Similarly, the need for appropriate social skills or control over obsessive behaviors is greatly decreased in a segregated environment. If I know I won’t be leaving the house, I might wear my PJs all day. But I won’t violate the social norm of wearing appropriate clothes to work. It took my son years to learn that he had to wear clothes (at least shorts) when he was outside of his room at home and keep his clothes on in public. While periodic nudity for a 2-year-old does not prevent a lot of social interaction, periodic nudity for a 20-year-old can get you isolated from the community in jail.
It became our core belief that our sons and daughters needed to live, work, eat and sleep in their community EVERYDAY. Not only to give our sons and daughters the quality of life that they deserve, but also to maintain their hard-won social and communication skill.