I recently had a discussion with a friend who also has a child with a visual impairment. Her child is an adult now, but I find that we still have much in common. While talking, she asked me a question that I hadn’t thought much about, but now can’t get off my mind.
She was wondering if it was harder for me to get the diagnosis that my son was blind…or if learning that he was autistic was more difficult. Immediately, I could say that his diagnosis of Autism was harder to take, but it took me a minute to articulate the “why.” What I quickly realized was that the reason the autism diagnosis was hard to hear, was because it’s mostly about the future.
When Eddie was diagnosed as blind, he was four months old. He had some minor medical problems at birth, so I really wasn’t focused on the future. I was worried about the day-to-day, and getting him healthy. Hearing that my infant was blind didn’t change much at the time. Eddie was acting just like an infant, blind or not, and that didn’t change with the diagnosis.
As he became healthier, and started receiving early childhood services (physical therapy, occupational therapy, vision, etc.), I was repeatedly hearing about the good things he was doing and the progress he was making. I began learning about adults with visual impairments, and the fear factor melted away.
I met people like George Abbott, who was the Vice President at the Hadley School for the Blind, and now works for AFB. I read the “Kernel Books” from the National Federation of the Blind, edited by their President Marc Maurer. I also met Mike May, the President and CEO of Sendero Group. Most importantly, I met a college freshman who could read braille faster than I’ve ever read print. All of these people were visually impaired, and they were rock stars. That was the future I saw for my son.
So, when he was five, and he was diagnosed with autism, that future disappeared. They told me that he was autistic, and that he was developmentally delayed in all areas, which wasn’t news to me. The Eddie that wasn’t officially autistic the day before, was the same Eddie that now had a new label. Present day Eddie was the same. What wasn’t the same, was the Eddie I had pictured as an adult.
That, I think, is why the second diagnosis was so much harder. It was mostly about the future. I had to grieve the loss of this amazing adult who happened to be blind…and find a way to replace that image with another amazing adult, who happened to be blind, and also autistic, and would likely always struggle in some way. I know, I know…it wasn’t the worst news possible, and he will continue to make me proud. However, disclaimers aside, I’ve found that autism and the implications of such a diagnosis, is a very hard pill to swallow.
Since that day, Eddie also was diagnosed with cerebral palsy, and as a result of that, we were told he would never walk independently. That was another future we grieved. The future of an Eddie on his own two feet was replaced with an Eddie, as an adult, in a wheelchair. Again, not the end of the world, but a grief we still encountered, and had to find our way through.
As you may know if you have read my other postings, Eddie does walk. We were told that he didn’t actually have cerebral palsy, and we unnecessarily spent months saddened by an inaccurate label. However, this is simply our life. There is grief, and it is mostly about a future imagined that we discover will not be realized. However, there is also joy, when the future turns out better than we had hoped, and greater than others expected.
What I want to tell people, is that when I am sad in relation to Eddie, it isn’t about today. Today is often a blessing, and I know what it looks like, and I am happy to have the family I do. When I’m sad…it is mostly about the future. It’s a future full of obstacles, and unknown outcomes, and unpredictable labels. Frankly, it is scary. However, what I try to remember is disability or not… isn’t that true for us all?