When we parents worry about our children with disabilities, like autism, we often experience a sense of loss, a bittersweet realization that our child will miss out on what they consider a "normal" childhood experiences. I felt the same thing. I wanted to understand why I felt this to be true and why it made me sad.
"My child will miss out."
Is that true? It's true that my child will not experience things that other kids do. He already has. His peers went to daycare, pre-K and elementary school. They've had kindergarten graduation, grandparents' day and moms visiting the class to read books. They've had good teachers and bad teachers. They've been on field trips. They play sports on a team. They've gone over to friends' houses for playdates and sleepovers. They ride bikes and scooters. They've seen Star Wars. My child has not experienced those things.
He will not experience the things I did growing up, either. No memories of a first-grade teacher like mine who wanted to be an astronaut, even though she walked with a cane. No friends he can look at and say "Dear Lord, we've been friends since elementary school." No chasing after an ice cream truck or playing kickball in the yard. No tree-climbing or bike races.
So it is true that he won't experience the same things. Why does that make me feel sad? It's because my entire frame of reference is wrong. Consider it this way: I grew up in Florida. I remember areas outside the city that were rolling hills of orange groves. Orange tree after orange tree. Dark green leaves, bright orange dots, the fragrance of orange blossoms. I loved that smell. Now, when I drive back to visit I say, "See those hills where all those houses are? There used to be orange trees there." It's sad, poignant -- for me. But someone growing up there now never knew the orange groves. They grow up in those rolling hills of houses and say, "See, that house there? My grandmother lives there. I used to rollerblade down that hill. It's awesome."
When I try to imagine how my child feels about life, I take my childhood and try to imagine my life minus those experiences. But that's a fallacy. Anytime I try to subtract my experiences, I will feel a sense of loss. That same sadness happens when I imagine what I think is a "normal" childhood, an ideal childhood, that comes with a list of all the experiences a child needs for a great childhood. Karate, Valentines, music lessons, ballet, team sports, schoolmates, formal dances, first car, spring break, college visits. Any missed experience means that I have to cross that item off his list. A missed experience means a less-than-ideal childhood. Always. It's a flawed paradigm for any child.
Children with a disability do not have a life "minus." They have a life, period. It's their life. It's not some other child's life, their parent's life or their peers' life. It's their life.
A complete childhood has nothing to do with specific experiences. A complete childhood does have certain qualities: connectedness, optimism, playfulness, a passion for things that interest them, a feeling of proficiency at things they want to do and a feeling of being loved wholeheartedly for who they are right now. That's the list that matters.