Letting Jillian Define Jillian

I was asked this week to speak to a local book club, whose members had read An Uncomplicated Life and wanted to pick my brain. I rarely pass on an opportunity for a free beer, and never on a chance to talk about Jillian and the unique joy of our special needs kids.

The conversation turned to expectations. Someone asked, “Did you shield Jillian more than your son, because of her disability?”

Never. Not once.

A few months into married life, Jillian is back working five days a week in the athletic department at Northern Kentucky University, and next week will attend her cousin’s wedding. In between, she and Ryan clean their apartment, plan and fix meals, pay their bills, go to work and have Date Night on weekends.

A lot like the rest of us, in other words.

Isn’t that the point?

The whole reason for agitating the school system and rattling society’s cages is to allow our kids to define themselves. Same as any other kid. Everything Kerry and I ever did on Jillian’s behalf was with that intent in mind. We don’t put limits on our “typical” children. Why would we do that our special-needs children?

Raising any child is hard work. Raising a child with a disability is just a different kind of hard work.

We never asked Why? We wondered Why Not?

We might have worried that Jillian wouldn’t have a social life. We never worried about where she was at 2 AM on a Saturday morning. Even when she did have a social life. We fretted over her academics. We didn’t fret that she wouldn’t devote all available effort to the task. She never underachieved.

My mother once observed that Jillian would come the closest of all her grandchildren to reaching her fullest potential. Isn’t that all we ask of anyone?

So, no we never shielded Jillian. We never used her Down syndrome as a crutch, or an excuse. We expected society to see her as an equal. Because of that, we expected Jillian to live up to society’s demands. It was a lot of pressure to put on a child. Jillian bore the weight beautifully.

So can everyone else’s children.

Expect. Don’t Accept.

Thanks for reading.

#downsyndrome #downsyndromeawareness #downsyndromewedding

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