Let Me Share With You

Just because our children have different needs and abilities does not mean we don't like to talk and brag about them. We can't usually talk about the after school activities, the football games, the parties, the sleepovers, or the dances our children attend. We don't often talk about the shopping trips with our daughters or our trips to the movies or the local theme park. And, we don't often talk about the future - what colleges are children are applying for, the type of husband or wife we hope our child will choose, or the number of grandchildren we long for.

Rather, the subjects on which we can speak involve g-tubes and traches, therapy visits and doctor appointments, impacted bowels and catheter sizes, special needs trusts, school struggles and court cases.

In other words, we speak about things most people aren't interested in hearing.

It may make them uncomfortable. I know my co-worker doesn't want to hear why I have to scrub my bathroom three times a week. They may not know what to say or how to contribute to our stories. They may even think we complain too much or make too big a deal out of things.

With a few rare exceptions, they don't 'get it.' They can't imagine living the life we special needs parents live, and they can't imagine having a child for whom end-of-life planning happens before the child is 5 years old.

But it doesn't lessen our need to talk and share. What can I do to make these non-special-needs parents and caregivers be comfortable when hearing about my life and the life of my children?