Standing up for my Grandchild with Special Needs

Posted in ChicagoNow, November 13, 2013 (cartoon by Marcia Liss)

Why didn’t I speak up? A friend with a grandchild near the age of my grandchild with special needs was talking to me about an upcoming outing with her grandchild. She described in great detail the fun outing, concluding with, “but you couldn’t take your grandchild there – it would be too challenging for her.”

Another time, an acquaintance was bashing including children with special needs in regular classes. She went on and on about how it was so disruptive and unfair. I seethed inside but felt it would be “impolite” to embarrass her by saying I had a grandchild who was included and occasionally disruptive.

Then there was the time in the ice cream store. My granddaughter loves chocolate ice cream with a passion and was flapping her hands and talking too loudly for the patron at the next table. The man stared at us with disapproval written all over his face. If I could have read his mind, I'm sure he was thinking, "What wrong with that kid and why doesn't her grandmother make her behave." We finished our treat quickly and left. I guess I could have said something to this stranger, but what?

I know it’s not that I am ashamed of having a grandchild with special needs. I love her more than life itself. It’s more like I almost don’t know where to start in the moment. It’s only after the fact that I think of what I wished I had said. So here’s my chance to speak up to my friends, acquaintances, well-meaning relatives, and strangers I encounter along the way.

Laurie’s list of don’ts:

Don’t feel sorry for me. I feel so lucky to have this child in my life and I am proud to be her grandmother. I need your empathy and understanding but not your pity.
Don’t talk about my grandchild in front of her as if she can’t hear or understand. She understands far more than she can express.
Don’t tell me you can imagine just how I feel. You can’t unless you have walked in my shoes.
Don’t bombard me with something you heard about for children like her or tell me “so and so’s child” has the same thing and she … Yes, you can assume her parents know about treatment options and the latest research. And every child has a unique set of needs.
Don’t stare disapprovingly at my grandchild when she behaves differently in public. Yes, she has special needs but she is still entitled to go out in public. You can be certain I am doing everything possible not to disturb you while trying to give her some of the normative experiences of childhood. It's a tough balancing act.
Don’t criticize the choices my children make for dealing with my grandchild’s issue. Please respect and support their choices. They are doing the best they can.
Don’t tell me, “I don’t know how you do it.” I’m no hero. People face greater challenges than mine with dignity and grace.
Don’t say you wish we could get our grandkids together but your grandchild doesn’t know how to play with mine. Just ask me for suggestions. Teach your grandchild a valuable life lesson.

I’m a polite woman unlikely to say anything to make you feel uncomfortable. Please return my kindness by not saying things that make me uncomfortable or angry. Don’t put me in the position of having to defend my grandchild or her parents. Otherwise, I may be forced to ask you, “Why would you say that?”