This is a guest post by Pat Kemp, Executive Vice President – Marketing, Corporate Relations and Development at Autism Speaks and the father of a young man with autism.
Tears were pouring down my cheeks as I was typing my 5 sentence letter to my son explaining to him that he was being asked to leave of my house and would not be living with me anymore. See, Ryan is not just any child; he is a special needs child who functions on the low end of the autism spectrum. He is nonverbal and very vulnerable. However, according to my attorney, Ryan could not live me after he was 18 if I wanted him to be eligible for housing and other subsidies. It was time for him to learn how to ‘live on his own’. How sad, yet I wrote and signed and dated it because it was how the ‘system’ worked. I still needed him protected in a safe and secure environment. So we went house hunting.
Ryan’s first home after ‘declaring his independence’ was a house that I was able to rent in his name at OATS (Offering Alternative Therapies with Smiles). OATS is a 55 acre horse farm in northern Oakland County that provides horseback riding therapies for individuals with special needs. Ryan had been a participant in the program there since it opened up in the late 90’s, so he was familiar with the surroundings. Plus, the entire property was fenced in so I at least could feel that he was safe. This worked out for a couple of years until I found a house to rent on a lake (Ryan loves the water) in Davisburg. The landlord has a daughter with Aspergers and lives next door, so he understands the situation.
I moved Ryan into his new home in Davisburg and put a sign on the front door that says “Ryan’s Party Place”. It is his private bachelor pad with athlete pictures on the walls, a pinball machine, an air hockey machine, etc. He visits my place once or twice a week and we stay in contact so I know he is safe and he knows I care about him. We call it that he needs some ‘Dad time’. I also need my ‘Ryan time.’
The next challenge was to get Ryan a job and teach him how to communicate better on his own. First things first, time to get a job. Ryan loves the outdoors. He and I have volunteered for many years to feed the horses and clean the stalls at OATS on Sunday mornings. I knew he had the skills to do this job, but OATS is a 501(c) 3 charity so I didn’t want to ask for Ryan to get a paying job there. After many months we secured a janitorial services job 8 hours/week at The Palace of Auburn Hills. Since Ryan loves the Pistons, I thought it would be a natural for him. So far, so good. He has his good days and his not so good days. He gets to wear a special shirt with his name badge on it which he likes a lot. He also gets to eat lunch at the employee cafeteria which he really enjoys.
Communication is a longer term project. For Ryan to really function independently, his communication skills need to improve exponentially. I bought him an iPad and we are programming that now. We have met with communication specialists and have ideas that we want to work on. Yet, like many children with special needs, Ryan inevitably surfaces another problem that needs to be addressed. Most recently it was an incredible need for O.T. which we are working on with specialists. Who knows what tomorrow will bring. Hopefully sunshine. Ryan likes sunshine. One thing I learned to accept a long time ago is that autism is like running a marathon, it isn’t a sprint. Patience, focus, persistence and advocacy are the keys to providing our children a brighter future than today. There are never ending needs for services for these individuals. We, as parents and advocates of individuals with special needs, need to stick together and fight for their rights. What I have also learned is that it is not important whether Ryan lives with me or not. I wasn’t giving him enough credit that he was ready to live on his own. However, I will never forget how difficult it was for me to sign that letter 9 years ago. My tears are still wet on my cheeks, but at the end of the day, I think I made the right decision.