It’s said that it’s easier to talk to a stranger than it is to someone you know. Perhaps that’s why a man I met briefly at a work appointment opened up to me about his son. He had just found out his six-year-old boy had autism. The news was devastating to him, and it hit him like it would most parents. No matter how optimistic or organized you are, no one is prepared to raise a child with a disability. As parents, we have wonderful plans and expectations for our kids; they are shiny dreams filled with hope and possibilities. Any disability is hard to digest, and the larger and more complicated the disability—the more unknown it is—the scarier it can be. For a family, this type of diagnosis is a game changer.
The man spoke at length regarding his son, about how he and his wife had suspected that something was wrong for quite some time. After all, his son was six and wasn’t talking, wasn’t potty-trained, and wasn’t playing with his toys appropriately. Still, hearing the actual diagnosis hit him like a sledgehammer.
“I sat down right there and cried—and I’m not the sort of man that cries,” he explained. The life he imagined for his young son and his family disappeared in an instant. It was replaced with the cold hard fact that his child could be with him and his wife as a dependent for life. At the very least, they would be managing and directing his life for years to come.
He told me how confusing it was to figure out the next steps, and how stressed he was about finding the best services available to them. The daycare his son was in was owned by friends of the family, and they told them they would need to find somewhere else for their son to go. (Being in the midst of a pandemic, I thought about how this makes their start even more troublesome.)
Of course having just met me, he had no idea that I was the father of a multi-disabled son who was turning 31. I knew his story all too well, and could relate deeply to his feelings and fears. Although every child and family is unique, I decided to reveal my son’s disabilities and offer what I had learned as a parent.
“You are now his advocate,” I said. “Make friends with your Community Centered Board (CCB) representative and make them an ally. Contact the school he will be starting and ask the CCB to join you at the IEP (Individual Education Program) meetings. Find out what programs are available and confide in families who have a child with similar disabilities. Don’t be afraid to ask for help.” I dumped all of this advice on him and then realized that I was only telling him about the “business” of being a parent of a child with special needs. I could see he was really overwhelmed.
I thought of my son Matt and how he loves his afternoon Dragon Fruit Iced Tea from Starbucks. The joy he gets from swimming lessons and horse therapy. Matt and I love the Jurassic Park movies; we bonded over dinosaurs. He was young and dove in my lap the first time they appeared on screen. Matt still loves them; he has charts and dinosaur models all over his room.
Although the business part—the advocate side of being a parent—is necessary, it is not where you need to live. “But the most important thing,” I quickly added, “is that I learned to never forget the great adventure it is, and will be, being his father. By far, being my son’s dad has been one of the most extraordinary experiences of my life.” I also remembered what someone who had a much older disabled child when my son was very young told me. “What I thought was my biggest tragedy turned into one of my greatest loves.” That is where you want to live, that is the place you want to make your home.