THE ABILITY TO MATTER
June 7, 2021
When most people meet Edward Cullen his animal magnetism draws them in, but when I met this fictional character from the Twilight Series, all I could think about was my son with autism. Why would a mind-reading, compassionate, loving immortal with super human strength and unending self-control make me think of autism? Two words – Adult Services. The dreaded cliff that parents walk off of when their son or daughter with autism ages out of school services. Not only could Edward Cullen be an amazing caretaker, HE COULD MAKE ME IMMORTAL. The immorality plan – the dream of every parent. I could be around to take care of my son forever. I would always be young, never age or get sick and always be there to make sure everything was just right. Like Edward Cullen himself, it is a beautiful dream.
Ability Matters was born out of the cold, hard reality that immortality (and the vampires who possess it) do not exist. Someday we will all age, get sick, grow old and, yes, even die. The cruelty of it can be almost insurmountable when you love a young adult who can’t communicate effectively, can’t live independently and will never provide for himself. The can’ts seem never ending and impossible to overcome in a way that can be debilitating. Ability Matters exists because a group of parents got past the trauma and started looking for adult services. I was one of them and my son was 14 years old. By the time he was 18, we still stood empty handed having found nothing. However, in the process, we had to define what we wanted. Why was each program so inappropriate for our soon-to-be adult child? What would a good program for our sons or daughters look like? Finally, we opened our own agency and began to build our new dream – appropriate adult programming for individuals with developmental and behavior needs. Programming that would allow them to have the ABILITY to MATTER in their community.