How do you write about the happy life you hope for your child to have when you have a hard time picturing it yourself?
For 18 years, I’ve dreaded the yearly ritual of writing a “vision statement” for an Individualized Education Plan, or I.E.P., for our son, Ethan. He has autism and, as any parent of a child with significant special needs knows, the yearly team meeting to develop the I.E.P. can be emotional and fraught. For us it has felt, at times, like an annual adjustment of expectations downward. In theory, the vision statement is a lovely idea — an opportunity for parents to articulate the optimistic future they envision for their child five years down the road. In reality, as Ethan grew up and his limitations — cognitive and behavioral — became clearer, I found it harder every year to write the short paragraph. We came to see he couldn’t live independently, get married, work in a job without support — but if those are the givens, what does a hopeful future look like?
This year, as Ethan turned 21 and completed his final year in the school system, he shocked us by writing his own vision statement. Reading his words made me realize how wrong I’d been for years, trying to articulate what my son’s future should look like.