Albert Einstein once said, “I never worry about the future. It comes soon enough.” Some believe Einstein, with his quirky genius, was somewhere on the autism spectrum. It seems to have worked out okay for him. Many events have converged recently, making me think in a more serious and cautious way about our family’s future. I was brought up to live “one day at a time” and, being prone to anxiety, that’s what I’ve always tried to do. That doesn’t mean we don’t set goals or make financial preparations for the kids, but I’ve never obsessively planned much of anything.
One question that comes up a lot with my friends and family members concerns Robert’s future. The consensus in our family is that John and certainly Joe will likely (hopefully) be able to live happy, productive and independent lives. Whether that will happen for Robert is not so clear. I’ve always tended to believe he would rely on us, at least to some degree, for the rest of his life. And when the question is posed, “What about Robert?” I usually respond glibly, “I don’t know, but he can live with us (his Dad and I) forever if he wants to.” I don’t want to shortchange him and the progress he has made by saying there’s no hope he’ll live independently, nor do I want to live in denial that this may be a lifetime thing. That’s what I’ve always thought of as a “worst case scenario” and it didn’t sound so bad.
About a week ago, I got an email from the son of one of our very good ‘online’ friends. We’d never met Randy in person, but had spoken frequently and become close over the past six years. Randy passed away suddenly at the age of 57 in February, leaving behind two sons and a wife. Both sons are on the autism spectrum and Jonathan, age 25, is an incredibly talented bassist. He is speaking out more about autism and Asperger’s Syndrome and was recently featured in a documentary called “On the Spectrum,” which I have posted about previously. His father Randy and mother Lyn are also interviewed.
Randy was incredibly proud of his sons and was always so gracious and encouraging about our own situation. Jonathan told me his dad was proud of my blog and that I was writing about the issues that affect so many parents of kids with special needs. My heart is breaking for his family right now and all I can offer is to tell them what a wonderful person he was and how proud he was of all of them. My sincere hope is that Jonathan will continue his incredible music career and also that he will continue to speak out for people with autism and Asperger’s, lending his own unique and insightful perspective to the conversation. Another friend of Randy’s wrote a beautiful blog note about Randy here.
Having children will make most parents think about their own mortality. Here you have a human being (or beings!) entirely dependent on you for their every want and need. It is an awesome and terrifying experience. But at 38, obligatory life insurance policy aside, I haven’t seriously considered my own mortality and how it could affect my family. What would happen to my kids, especially Robert, if I wasn’t around? Or my husband? These issues are faced by thousands of families with special needs kids. And there are so many adults with special needs who have aging parents. These parents are trying desperately to arrange care in the event it is needed and relying on the good intentions and work ethic of near strangers to care for their loved ones. And while I believe in my heart that most people are good people doing the best they can, we’ve all heard the horrifying stories of abuse from those who aren’t. It would break my heart a hundred times over for someone to neglect, injure or hurt my sons. It’s happened before on a very mild scale and I quite nearly went ballistic, narrowly avoiding a lawsuit against the school and extracting myriad promises from the district where it happened.
I feel such a sense of urgency to bring autism awareness to people now. Not just for the pre-schoolers or the high-schoolers, but also for the adults who rely not just on their families but on society to protect them from harm. Every single person with autism has something to contribute and deserves safety, dignity and understanding. I’ve seen signs that people are learning and progressing – since our family has been in Florida, every person, without exception, has smiled kindly at my son (and me) during one of his “autistic moments” in public. I know it’s not like that everywhere and maybe we’ve just been lucky. But it’s definitely a start.
Love to the Chase Family and Peace.
Filed under: autism | Tagged: autism, autism awareness
