In my time blogging about raising a child with special needs, I’ve received a good number of emails. There are several recurring themes to these emails: some about assistive technology, some about looking for specific resources or online communities, and several from friends and family members whose loved ones have recently had a child diagnosed with special needs. In this last group of emails, people often express their love and concern for the parents of the newly diagnosed child and ask me “What should I say to them?”
Another writer answers that question this week in her article “5 Things That You Can Say To The Parent Of A Child With Special Needs.” Disconcerting, though, is the fact that although I am indeed “the parent of a child with special needs” I would not be jazzed about receiving some of these suggested comments. Let me explain why, and then I’ll offer my own thoughts on what to say.
First, don’t tell me “I’m sorry.” Like, ever. “I’m sorry” leaves a disturbing amount to interpretation. Are you sorry that my kid is lying on the ground and throwing a fit? Ok, but maybe “we’ve all been there” would be more clear. Are you sorry that I’ve spent so much time in therapy this week, or that we had 2 doctor’s appointments yesterday, or that I’m stretched so thin that we can’t get together? Maybe “I’m sorry that things are so hectic for you right now” would fit. Are you sorry that my kid has special needs? Well, you can keep that to yourself. To me, “I’m sorry” comes across as “I’m sorry that your kid is the way that she is.” or “I’m sorry that you are burdened by your child.” As I hear it, it’s an insult to my child (and a pretty bad one at that). I don’t want your sympathy, and Maya is not a circumstance to feel bad for, she is a lovely little girl.
Second, please don’t ask for her diagnosis. It’s not appropriate to ask about other people’s medical information. Asking for a diagnosis is not making small talk, or breaking the ice----it’s asking about her private medical business. If you want to make conversation that acknowledges her challenges or “break the ice” you could ask about something specific, I guess, like “Is it hard for her to climb those stairs?” or “How long has she been using her communication device?” If I want to share information about her diagnosis, I will----if not, asking makes things a little awkward. (PS-If you’re new here, Maya doesn’t have a diagnosis, which is particularly fun to explain to bold strangers. One time, in response to hearing that Maya didn’t have a diagnosis (after she asked), a woman asked me if I had ever taken her to a doctor. A woman I had never met asked me this. While I was eating in a diner. With my family. Seriously.)
Now, possibly disregard everything that I just said . . . because while all of the above rings true for me, it might not for others.
Undoubtedly, there are some SN parents who would appreciate “I’m sorry” and would enjoy being asked about a diagnosis. (If you’re in doubt, see the little conversation on our Facebook page last night.) I would hate those comments, but some would love those comments, while some just want to be left alone (ok, that’s often me as well, given my anti-social tendencies. I’m working on it.) and others are so happy to be out talking to other adults that they don’t care what the conversation is even about. So . . . I guess we’re all different? Who would have thought!
The bottom line is that there are no universal things to say . . . parents of kids with SN are as diverse as any other group of adults (parents of kids with brown hair, parents of kids who wear shoes, etc). Our commonality (and, to be fair, it’s not one to be underestimated) is that we have a lot on our plates . . . we are short on time and long on stress, we struggle with more than our fair share of emotional turmoil, we are usually fighting several battles at once, and we are worried for our children and their futures. But everyone responds to these stressors, and to fear of the unknown, very differently. Some people want reassurance (this will all be ok), some want sympathy (this is terrible, isn’t it?). Some people want to talk about the issues (tell me about the diagnosis), and some want to ignore them (isn’t the weather lovely today?).
For those of you who have come here through a search engine because you’re actually trying to find the right thing to say, I offer this: just love the kids. Nothing meant more to me (and continues to mean more) than friends, family, and coworkers doting on my kid. All parents enjoy seeing others care about their kids, but for me (and, I imagine, for many other SN parents) the ideas of acceptance, inclusion, respect, and love are especially loaded.
For those of you who are just wondering what to say to the random SN parent that you might bump into at the playground, I would go with something simple. You know, like “Hi”.