Reprinted from the NYTimes – written by
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.
While Ethan was still in elementary school, our vision statements included the same wish list I imagine every parent of a child with autism probably has: better communication, fewer meltdowns, more independence. When he was 12, I got more pragmatic, “We wonder if Ethan’s love of farm machinery might one day become an employment opportunity.” At 13, after a successful stint in the middle school chorus, I wrote, “Ethan would like a future in music, perhaps as a professional singer?” At that point Ethan was still working on using a Kleenex to blow his nose. A future as a singer was far-fetched, I knew, but I wrote it as a way of saying: Ethan does have abilities. We’re serious about developing them.
This is the great challenge parents face in these yearly meetings: You’re fighting for teachers to help your child work toward a future that, with every year, feels as if it’s growing narrower and bleaker. When it’s clear he’ll never understand money well enough to make change, you cross off the possibility of working in any retail job. When he can’t stop rubbing his nose or touching his mouth at work, all food service opportunities dissolve as well. When his self-talk disturbs the nursing home residents where he genuinely likes volunteering, another door closes.