Spencer’s Story – The First Day of the Rest of Your Life
by Tobin Trevarthen
I am a father of a special needs son who became an adult in June. An adult by government definition is 22. The Individuals with Disabilities Education Act (IDEA) mandates a free and appropriate education for special needs individuals through age 22.
While we prepped for this day since our son was diagnosed with Infantile Spasms at six months of age, we now find ourselves facing the reality of what to do now that his structured life has come to an end. His school bus doesn’t come anymore. His teachers, aides and transition life skills are officially over. And, his long term living situation is also now a harsh reality we must come to grips with – does he live with us the rest of his life or do we find him an environment where he can live as normal a life as possible?
We have gone through all the wills, conservatorships, trusts and future looking preparations that one must deal with in our situation.
An article in the NYT in 2011, pegged almost 60% of adults with special needs services (article mainly focused on autistic infliction) now live with their families. The numbers are growing exponentially as those diagnosed on the spectrum today are now 1 in 68. Are we as a society prepared for this wave of people who will require support and assistance as they age?
So, here we are. We have arrived at that chasm. My wife and I have explored every adult living option possible since our son was 14. I personally joined the board of an organization – Sunflower Hill – whose mission is to create a living community for Adults with Special Needs. Sunflower Hill is two years into the process and making great progress, yet it will likely take a few more years to gain the land and build the community we envision. But, we are committed to solving our respective issues as a united group of parents who face the same life journey.
My wife and I did find a wonderful day program for our son to begin his post school life that started this last week. That said, the program treats our son like an adult who can make his own decisions and find his way to the program. That requires that he can make an appropriate decision and can find his way to the program across town. Thankfully, he is on the higher functioning end of the spectrum, but he still lacks the reasoning skills necessary to navigate the nuances thrown at him.
He desperately wants to be like everyone else (sic normal). He wants to make his own way. We have multiple options of getting our son to the program: Bart (SF version of the subway), a county bus with connections, a cab or one of us driving him to and from his program. The conflict of letting go and wondering if he will catch the right train or the right bus and get off at the right location gnaws at us. In addition, will he be able to push the button to cross the street of a busy highway, while navigating drivers and cars who are not aware of the situation.
My wife conducted multiple test runs with him on the bus scenario over the first three days and then dropped him off at the bus stop for day four so he could fly solo. She waited at the other end. The bus schedule got messed up due to traffic issues. He had a new driver, who was not concerned about babysitting our son to pull the chord. He missed his stop, but realized it and pulled the chord for the next stop (which was okay, but an even busier intersection).
We are cautiously proud of his determination to make this work, but like all parents who are letting go…we freak out by the “outlier scenarios” that will require him to think on his feet. The irony is, this fear could go for any normal teenager who is looking at their phone vs. paying attention to the situation. But, for adults with special needs, a large does of empathy and compassion are required to help nudge them along to get to their destination.
After last week’s experience, I reached out to see if there was a way to create a unique service for people like my son. A safe alternative to mass transportation that could align with the “routine” driven make up of people like my son. I was made aware of a service being tested in Chicago and soon to be LA for people with disabilities. I inquired about extending this to our area.
I share this journey, because I have met many people in my shoes who are also facing this reality or will be in short order. All we have are each other and our stories to help us to move forward. If you have ever seen the movie Groundhog Day, I believe we are writing the sequel.