A few days ago Parents magazine posted an article on its website called “7 Things Not to Say to Parents of Kids with Special Needs.” This feature came from Ellen Seidman’s blog To the Max, where she writes about raising her son who has cerebral palsy. While she clearly states in this article her frustration with people who say awkward things to her about her child, I can summarize her suggestions into three basic areas. [Her article can be accessed by clicking HERE.] First, she does not want pity for her child or herself, and I can relate to her feelings on that matter. However, I think people sometimes confuse pity and sympathy, and others aren’t certain what to say to show that they care about the parent who is dealing with a special needs child. Another comment she thinks is improper is asking about what skills a child has mastered, for example, whether the child is walking yet. Again, I suspect that people are trying to express interest but don’t know how to show this in ways other than by making remarks that may be construed as judgmental or just plain nosy. Then in the next three items, she gives examples of remarks that focus upon the child’s appearance when people say that the child looks “cute,” “normal,” or happy. While she views these comments as negative, I value that someone is trying to find the positives in the situation and be complimentary, albeit in perhaps a less than articulate way. Finally, she lists the following remark as taboo: “You are a saint.” She asserts that she is just like any other mom, trying to help her child. The thing is, parents of special needs children do have different challenges than other parents, although not worthy of sainthood, but certainly buoyed by compliments that recognize the job we are doing in raising our children. When people have said kind things to me about my parenting, I appreciate their comments, which give me support and encouragement. Although I admire Ms. Seidman for expressing her feelings candidly about comments she finds hurtful, I realize that I see things slightly differently as a special needs parent than she does, maybe because I’ve been in this game of Chutes and Ladders longer than she has.
Even though I tend to be overly sensitive to people’s remarks, even to the point of being somewhat paranoid and assuming that people don’t like me unless they openly declare admiration and affection, I guess I try to assume that people have good intentions. Because I have been blessed with people who have shown thoughtfulness and concern for how autism has impacted us, I would take a different approach and suggest things to say that would be positive and reflect the support they are trying to show. My list of “What to Say to Parents of Kids with Special Needs” would include the following:
1. Focus on the positive with a genuine compliment for the child, such as, “He has a great smile.” or “He is so smart.” or “He’s really a great kid.” All of these examples were said to us about Alex, and as a mom, they filled me with pride.
2. Ask about the child’s interests and activities, just the way you would about any person you wanted to know better. For example, the questions “What is he interested in lately?” and“ What does he like to do?” treat the child as typical and allow the questioner to know more about the child’s personality.
3. Express support for the parents by commenting on their strengths. Parenting is often a thankless job, and parenting a special needs child adds extra responsibilities to that load. Comments like “You are wonderful with him.” and “You’re doing a great job.” lift parents’ spirits. I appreciate kind words and have been blessed by great friends and family who reassure me often. In other words, if you have something nice to say, I encourage you to say it.
This article regarding what not to say came as I have been mulling Alex’s schooling lately. This past week Ed and I have been in situations where we were asked questions about Alex and whether he was going to college now that he’s 19. When Ed was buying an anniversary card for me a couple of weeks ago, the clerk asked him how long we’d been married, how many kids we had, and how old they were. Even though his native New Yorker personality makes him bristle at personal questions from strangers, he’s been in the Midwest long enough to be nice about answering them anyway. He told the clerk we’ve been married 23 years and have a 19-year-old son. The clerk then asked where our son was going to college, and Ed told her that he’s not going to college, to which she replied, “Oh, he probably will eventually,” not knowing Alex has autism. Similarly, I saw an old friend who moved away several years ago but was back in town for a visit with family last week. Although she knows Alex has autism, she asked if he is going to college, commenting on how smart he is, and I told her no. In both of these situations, people were trying to be nice, so neither Ed nor I were offended by their questions but appreciated their interest. In contrast, I found numerous comments in response to the Parents online article reflected a needless hostility. Parents of special needs children resented questions and remarks from people who didn’t understand, and people who did not have special needs children accused the parents of being overly sensitive. What was intended to bring people together created a rift, which is sad. However, I do believe that most people are good at heart, and while people need to choose their words carefully, we also need to listen carefully to the true meaning behind those words. In talking about any child—special needs or not—I hope people focus upon the good, making their remarks truly remarkable.
“Some people make cutting remarks, but the words of the wise bring healing.” Proverbs 12:18