What Not to Say to Parents of Kids with Special NeedsEllen Seidman
Over the years, I’ve dealt with all sorts of reactions to my son, Max. He had a stroke at birth (yes, babies can have strokes) that resulted in cerebral palsy. As a result, he has limited speech and a lot of trouble using his hands. But in many ways, he’s still a kid like any other kid – he loves to ride his mini tractor, eat chocolate ice-cream, watch SpongeBob SquarePants, tease his little sister. Other people don’t see him as being like other kids, though, as I know from the remarks I’ve heard. Please don’t take any of the following the wrong way; I’m being brutally honest about what hurts, offends or gets to me (nor am I claiming how I feel is true of all moms of kids of special needs). These are the things I’d prefer that people didn’t say:
OK, I realize that when you tell me this, it’s coming from a good place. It’s what people say when they’re otherwise at a loss for words, and I know that because I’ve said the words myself. But this is what I hear when you remark “I’m sorry”: “I am sorry that you have a tragedy on your hands.” Trust me, my child is no tragedy. He is a joy. Would I prefer that Max didn’t have a stroke? Of course. But he did, and he’s coming along. And I’ve accepted what happened to him, for the most part. So please, don’t be sorry. We’re both doing fine. Also, please try to avoid tilting your head and looking at me sympathetically with The Pity Stare. I am not pathetic.
“It’s great that he has such a good personality!”
The unsaid part of that sentence is “because otherwise, he wouldn’t have much going for him,” but, actually, Max is a bright and curious child who can understand most of what you say. While I agree that he is not the least bit personality-impaired, by all means, mention something about his smarts or his accomplishments. Or simply say, “Wow, he must get his brilliance from you.”
“I don’t know how you do it.”
Well, I didn’t have a choice in the matter, so I’m just going about life the best I can. But really, how do any moms juggle it all? I’m not that much different from anyone else. I may have to help Max spoon food into his mouth, and he’s not yet toilet-trained, and I have to take him up and down stairs and assist him with any number of other things. But really, it’s all a part of being a mom, and it makes me uncomfortable when you put me on a pedestal. I definitely don’t deserve Mother Teresa-hood. Would Mother Teresa have ever slacked on doing a child’s therapeutic exercises? Would Mother Teresa have ever lost patience with a child who is not able to speak? Would Mother Teresa have ever let a kid eat four chocolate puddings for breakfast? I don’t think so. Max is a kid like other kids; I am a mom like other moms – not perfect, but doing the best I can.
“He looks so normal!”
Again, I understand you’re trying to make me feel better. But telling me how great it is that Max seems like other kids implies that the best possible thing for him is to be “normal.” Thing is, he is his own kind of normal. I have no desire for Max to “pass” for a typical kid. It’s better not to say anything and just let my child be who he is.
Not a good way to describe something that’s bugging you when you’re around the parent of a kid who has mental retardation. Listen, I’m not up here on a soapbox; over the years, I’ve used the word “retard.” It’s something teens say all the time. But there’s a big campaign right now to get people to quit saying the r-word, because, bottom line, it’s derogatory, demeaning and downright offensive to people who have mental disabilities. Please, think twice before you use it.
“Is he autistic?”
I understand that you’re curious about Max, who isn’t really able to talk. When I notice other kids who have issues with verbal communication, I also wonder what’s up with them. Key word: wonder. If you’re a nosy stranger playing Guess The Disability, I am just not going to engage. Once, when a mom at a mall playground came up to me and asked, “Is he deaf?” I said, “Well, he’s from Pluto, and he has a special transmitter inside of his head that sends his thoughts back to the mother ship.” She gave me a dirty look and walked away. See? There’s no way I was chosen to do this job.
P.S.: Here are a few things I love to hear:
“He rides that bike so well!”
I’m psyched to hear compliments about Max’s abilities, because he deserves the props. Every single day he defies those doom-saying doctors at the hospital where he was born.
“He’s improved so much!”
This I can never get enough of, because I’m around Max all the time (you know, being his mother and all), so I don’t always see the progress. But when friends who haven’t seen him for a while notice that he’s saying more words or walking really well, I suddenly – and happily – see it too.
“Can I babysit?”
P.P.S Are there comments people have made that have rubbed you the wrong way? I’d love to hear your thoughts.