Please read this article written by the father of an Autistic child. It is sincere and succinct; verbalizing the anguish, trepidation and fear that most parents on the Spectrum share. I can only add that, as difficult as it is to face these questions now, it will only be that much harder if you put them off for another day. There are many professionals in the field of estate planning that have expertise with dealing with families with Special Needs children. You may also want to contact your school district’s Special Education department, or state developmental disability service office (DDSO) to see if any adult transitioning seminars are available, to learn about what you need to do to prepare for the future.
You can’t stop the future from arriving; you can only be prepared for it.
Facing Autism‘s Hard Questions
By Larry Blumenthal
When you have a child with autism, you try not to dwell on a couple of heart-wrenching topics. But there is no place to hide when your child brings them up on his own.
My son Clay, who is 16, doesn’t communicate through speech, but over the past two years, he has been learning to type with support. It has been a revelation. His typing has confirmed that he can read and do math, and it has released his silly sense of humor. It has also allowed him to request the garlic naan when we get takeout from our favorite Indian restaurant, and to suggest that we rescue a puppy-mill golden retriever last Christmas – the only gift he wanted.
Typing has given voice to Clay’s joy and frustrations, as well as the innate intelligence that lies beneath his squawky, gawky exterior.
So I suppose we shouldn’t have been surprised when, during a recent session with his typing teacher, he jumped right into the dreaded topics.
“I think i am feeling a little worried about my future and what a life for me will be like,” he typed when the teacher asked him what was on his mind.
That’s Dreaded Topic No. 1: Clay has four more years in the school system before he is on his own. What kind of productive life can he expect at that point?
This is a smart kid who wants to contribute. At the same time, he struggles to dress himself every day, he can’t prepare his own meals, he will never drive, and he will likely need a one-on-one aide for the rest of his days.
Ready to grow up
We know from talking to other parents of children with special needs that we are not alone. Many are struggling with the same dilemmas, the same limited options, and the same desire to help their kids achieve meaningful adult lives.
My wife and I are working on some ideas that could harness our son’s love of the outdoors and farm animals. While we haven’t found anything just yet, there is time, and we are feeling confident that we can piece together a solution – which is what we told him in reply to his typed concern.
“yes,” he typed. “I get excited to think about a real life and being helpful in animals lives … then I feel just useful … ready to grow up but … ”
Here came Dreaded Topic No. 2:
“… worried about what will happen when I am alone and you are too old to take care of me.”
My son types on an iPad app that vocalizes the sentences when he hits the “speak” button. I was listening to what he had typed from across the room when I realized that the teacher and my wife were in tears.
This is the toughest question of all: Who will take care of Clay when my wife and I no longer can?
Like a mouse
My 83-year-old father has been in and out of the hospital over the past two months, fighting an infection that hit him out of the blue in the middle of the night. As I watch his family and friends rally around him – visiting when we can, bringing him milkshakes and burgers to get him to eat, sitting at his bedside to keep him company, cooking meals for my mom – I keep wondering about my son. Who will sit by his bedside when he isn’t feeling well? Who will bring him garlic naan to cheer him up? Who will be his family when we are gone?
Age sneaks up on you like a mouse with socks on, one tiny step at a time. One day you are playing kickball on a grassy field at recess, the chatter of your friends ringing in your ears. The next, you find yourself buying a magnifying makeup mirror so you can see well enough to trim the hairs growing out of your ears. All the while, you develop an increasingly stiff back, don ever-thicker glasses, and begin to groan involuntarily every time you stand up.
Time and age will catch up to my son as well someday. We will do what we can to make sure he will not be alone. His older brother will be there, as well.
The sound of the iPad snapped me out of my reverie. The little guy had more to say.
“Get ahold of yourself,” he typed to his mom and teacher as they piled up the tissues. “I was just asking a question.”
Yes, but it was quite a question. And I wish I had an answer.
Larry Blumenthal is the executive producer for health at Philly.com. He lives in Bucks County and chronicles his son’s journey at lifewithclay.com.