I have three children with visible special needs, and so I have become somewhat used to fielding questions from the general public. For the most part, my interactions have been positive, and I am more than willing to deflect a rude or too personal question. Just because someone asks, doesn’t mean I have to answer. But I can also remember back to when I was new to the whole special needs and adoption game. I don’t want to brush off questions if they could help someone better understand my children. A lot has to do with how the questions are asked.
Here’s my list of ways people can ask questions without annoying me or insulting my child while doing so.
1. Think about why you want to know.
Is it just idle curiosity? Chances are I won’t indulge you. The reason is idle curiosity questioners are not truly interested in knowing the answer and doing something with that information to make themselves a better person. No, they’re just nosy and my family has happened to pique their interest. Once they can figure out how to slot us into their worldview, they will be off, with little to no difference to themselves. My family and my children are not here for nosy people’s entertainment. So, if you are asking me about my children with no other purpose, then don’t expect me to answer.
2. Please don’t ask me about my family when my children are around.
I’m happy to talk about our experience with these special needs. I’m happy to discuss adoption. What I’m not happy to do is to discuss these things when my children are listening. They are already highly aware that they are different and our family is different. I will not discuss these differences, thus highlighting them even further, in their presence.
3. Share your concern.
Probably the most common question I’m asked is whether my children’s special needs hurt them. One daughter has difficulty walking, while two other daughters have facial differences that can be surprising until you get used to them. (That process takes a surprisingly short period of time, by the way.) When people see these differences, they tend to assume that my children experience pain. Since this is a question out of concern, I am happy (out of earshot) to assure people that my children are not in pain. By alleviating people’s concern for the well-being of my children, it allows them to begin interacting with the child and not the need.
4. Ask me how to interact with my children.
Some people (and this would certainly have been me earlier in my life) feel a bit lost when interacting with children who are different. Because they do not want to insult or do something wrong, they often err on the other side. There is a happy middle ground. I am more than happy to assure people that my mobility challenged daughter is pretty darn typical as long as you are not challenging her to a footrace. No kid gloves are needed with her. I am also happy to explain how my other two, more delayed, daughters interact with the world. I can give you ways to interact with them that will enable them to participate in the exchange, and conversely give you tips as to what to avoid. Because this makes my children’s lives better, I am more than happy to do this. Need I add again, out of earshot of my children?
5. Ask me for information about their medical conditions.
I will give you general information about cerebral palsy or linear nevus sebaceous syndrome. One I’m sure you’ve heard of, the other I’m sure you haven’t. I am happy to be an advocate for people who have these conditions. I am happy to share what the general challenges are and how life is completely normal in other ways. Don’t expect me to share private medical information about my children, though. That falls under item #1.
6. Always put the person first.
I know that some disparage what they call political correctness these days, but really, I don’t see what the problem is with using language that puts people first. My children are first and foremost children, human beings who just happen to have medical conditions that impact their daily lives and happen to be noticeable. My children are not defined by their diagnoses. Even if you make a mistake in terminology here and there, if you are making an attempt to put the person first, you can’t go too far wrong. To that end, there are also certain terms and phrases which should never be used. If you happen to use them in my hearing, you will not forget why they should not be used. I promise. Among the most egregious are: cripple, retard(ed), and spas/spaz. Just. Don’t. Do. It. You can also skip the question, “What’s wrong with them?” as well as the comment, “Did you get a discount?” As with the previously mentioned terms, conversations will happen, just not the one you expected.
In Summary . . .
With all that, it can seem to be a treacherous endeavor to approach me to ask a question. Here’s the short, cheat-sheet version: First, make sure my children are not in earshot. Ask me if I mind if you can ask a question about my child’s special need. It is also great if you add why you would like to know. (For example, you want to know my child better . . . or you have some connections with that special need . . . or you have been thinking about what it is like to parent a child with a special need.) It helps to move you from the first category to another one. Be content with the information I’ve given you. If you feel as though I’m being vague, I probably am, with intent.
Finally, be aware that for the most part, parents of children with special needs are really not that much different from other parents. We have good days and bad days. Our children have good days and bad days. Some days we have a lot of extra energy to educate others, and some days we don’t. If a parent looks particularly frazzled, right then is probably not the time to ask your question. Offer to carry something, buy them a cup of coffee, or just smile and go on your way. Because when it comes right down to it, even though most parents with special needs children are good at advocating and educating, we long for a day when our children and our families are not really seen as anything different than a family whose members do not have visible special needs. That is why we educate. To help create a world where that education isn’t necessary.