Q18: Life With Charley – Graduation Day

Sherry brings up the issue of feeling alone and connecting – or not – with other parents.

I started writing about Charley so long ago that I don’t remember when. Back then it was my way of coping with the isolation of raising a special needs child. I learned long ago that special needs parents often feel as if they are going it alone. 

You would think that there’s some instant connection between special needs parents, but that’s not always the case. Surprisingly, and I hate to say this, I’ve found parents of special needs kids to be more aloof than open, and that makes for a smaller support system of those trying to figure it out. Oh, there are organized groups and associations. Meeting another parent of a special needs child randomly in public, however, sometimes results in hit-or-miss verbiage, casual morale boosts, and limited kinship. I can’t remember the last time I met a parent of another young adult with Down syndrome that resulted in the exchange of phone numbers or future meet-ups. I don’t mean to criticize or imply that this is the way it always is, it’s just that this is the way it has been for Brad and me.

She also faces the sensitive topic of bathroom habits.

And that brings us to our friends. The ones who want to commiserate with us. It’s not that our friends don’t want to understand, to comfort us, to identify with us, but they can’t. How could they possibly? While their children were potty trained as toddlers, we were still chasing ours around the house with toilet paper at eighteen years of age.  Pp. 290 – 291


Have you felt isolated and alone as a parent?  Have you had similar issues with finding support?

Are there things you just can’t explain to your friends who have “typical” children?

How did you feel reading about Charley’s bathroom issues?

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