Sunday, July 24, 2011

Suggested Remarks

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


farmwifetwo said...

I have learned over the last 12yrs and 10yrs (since I've doing this twice on different ends of the spectrum) is that most people are kind and mean NOTHING rude when they make a verbal 'faux pas' and I just smile and let it go.

I answer their questions patiently since the best way to make a difference is by teaching one person at a time. I don't whine about my fate, I will admit it is difficult at times and I don't apologise for choices I make.

The one that gets me the most is those that send you emails or ask you in public "do you know who Temple Grandin is", "did you know about the diets".... that actually irritates me. Makes me think that they truly think I cannot be bothered to learn all I can about autism and deal with it in a manner that fits our family best.

As for the "I don't know how you do it?" "You're a good parent" comments, I simply reply with a smile and change the subject.

Since I too have no idea at times what to say to people when something negative happens... I'm willing to cut people a little slack when trying to find a way to talk to me about my children. I'd rather they talk to us and learn, than ignore us and make assumptions.

Jane Y said...

Pam, thank you for another thoughtful piece. Though I do not have a special needs child, I frequently encounter a similar situation with my "obviously" adopted son. It's amazing what total strangers will say in front of your child! However, I, like you, tend to believe most have only the best of intentions and simply haven't thought of how their question/comment comes out. I always try to respond in as positive and open a way as is appropriate, in part to model for my son how to handle awkward questions and to let him see that he has nothing about which to feel embarassed or ashamed. Besides, I would much rather have an open question that I can gently reshape than a whisper behind my son's back.

Pam Byrne said...

Hi Farmwifetwo,

I think you're right about using these experiences to teach others about autism. If we want people to understand autism, we should be willing to share what we know.

I think when people bring up Temple Grandin, special diets, etc., they're trying to show an interest, but I can see how that would annoy you after raising two on the spectrum. My friends will share research or articles about autism they've found, often prefacing it with, "You probably already know/have seen this...," which I appreciate. For me, this shows a concern for Alex and me. :)

Thanks for your comments and sharing your insights. :)

Take care,

Pam Byrne said...

Hi Jane,
You have brought up several excellent points and explained them eloquently. (Our VU English profs would be proud!) You are absolutely right about your first priority, which is your son's feelings and never wanting him to feel embarrassed. I think being open about our situations--adoption and autism--makes our sons realize that being different is all right, especially when they have parents who love them so dearly. :)