Five Things Not to Say to a Special Needs Parent

If you don't have something nice to say, duct tape your mouth.

"Kids may not remember what you say. Or what you do. But they will remember how you make them feel."

A few years ago, while attending a bullying seminar at a parenting conference, I heard that quote from the presenter. I couldn't help but agree. I, for example, have forgotten so much from my childhood, but remember vividly the rare occasions when I was yelled at in school. In third grade, for example, my teacher called me a hypocrite for making someone laugh when I was supposed to be helping her with her work. At the time, I had no idea what that word meant (I didn't learn it til 10th grade vocabulary), but I did remember how it made me feel — embarrassed, ashamed, and humiliated.

Most of us have felt that way at one time or another in our lives (though the kids from Jersey Shore seem to be immune). Unfortunately, some people experience it more than others, such as special needs parents. When our children are acting out or exhibiting some of their quirks publicly, it's not uncommon for people to say things that sometimes leave us feeling humilated, angry, and above all, sad.

Of course, sometimes people don't mean to hurt us. They may be uncomfortable and nervous and say the wrong thing. I'm guilty of that when I attend wakes. When I go through the receiving lines, I never quite know what to say when a family member expresses their thanks to me for attending. A few times, I've said, "I wouldn't miss this wake for the world." Afterward, I thought, "Oh God! I just told them I take pleasure in death. They think I'm sick."

There are, however, people who say harsh things because they are judging us. I asked special needs parents to share what they feel are the worst things people can say to them, and came back with these 5 No-Nos.

1) "I don't know how you do it." While this may seem like an innocent comment, it drives us crazy when people say this particularly in times of crisis when we are most vulnerable.

"I had to put my daughter in the hospital. Her depression was so bad."

"Oh Patty, I don't know how you do it."

We "do it" because we don't have a choice. The only alternative would be to curl up into a ball and give up. Where would that put our children?

2) "Give me your kid for a week and I'll whip him in to shape." There are many reasons why people should never say this. The biggest one is that given the stress many special needs parents are under and the fact that we aren't used to people wanting to take our kids, we are likely to take you up on your offer.  So if you make this request, be prepared to get this response: "OK great, I'm free at 5:00 and will drop her off then." We also might peel out in your driveway in case you change your mind. 

People who say things like this often remark,"Your child just needs discipline." Believe us, if discipline were the answer, we would all run boot camps. We would love to think our childrens' struggles were a result of our parenting mistakes. We can control those.

3) "You poor thing." The one thing that special needs parents can't stand more than anything (besides being tagged on a perfect kid's Facebook report card) is pity. We don't want you to feel sorry for us; we want you to be compassionate. Compassion and pity are quite different. Compassion says to a person, "I feel your pain, let me take some of it away from you. Pity, on the other hand, says, "Wow! Your life stinks! I wouldn't want to be you!"

The fact is, our lives with our special needs kids don't stink. Are they challenging? Yes. Are there times we think about drinking a box of wine at 9:00 a.m.? You betcha. Are there days when we think we can't stand another moment of watching our kids' struggle to be accepted? Plenty. But there are also days when we experience joys that other parents never understand—like when our kids hit major milestones in their lives, such as  getting invited to a party or making a friend, or using the potty for the first time—at age 8.

4) "I'm so lucky, my kids are healthy." When people say this, it makes it sound like our kids have some terrible disease. It might surprise some people that most special needs parents actually think they are blessed to have the children they have. My special needs children have enriched my life in so many ways. They've given me the gift of compassion, taught me unconditional love, made me less judgmental, and helped me appreciate the family and friends who have supported them. Sounds pretty healthy to me.

5) "If that were my kid, he'd be different." It's so easy today to make judgments about people based on the way they look or the way they act. It's a lot more difficult to stop and think about what it would be like to walk in someone else's shoes. Someone who makes this type of comment obviously doesn't have the ability to do that. The best response to this statement is this: "No, If that were your kid, you'd be different." So until you walk in my size 9 wide shoes, shut up!

These are just a few things that special needs parents have to hear on a daily basis. If you're a parent of adopted special needs children, you might hear even worse things. Some parents have been on the receiving ends of these harsh comments:

"At least, she's not your real child."

"Did you know he had special needs when you adopted him?"

"Did you try to return them?"

What you could say.

So now that I've shared what we don't want you to say, what should you say? Here are some great suggestions:

  • Sometimes it's better to listen than to speak. Many special needs parents just want someone who will listen objectively, and not judge.
  • Don't be afraid to ask specific questions that can help educate you, such as "Can you tell me more about autism?" Avoid questions, such as "What's wrong with him? Or what's her problem?"
  • If the child is present, don't talk as though the child isn't there. That makes the child feel ashamed.
  • Remember the difference between compassion and pity.
  • Ask how you can help. You'll score major points with that one. For added points, you may want to offer to adopt our kids. Just kidding!

Tell us—how does this make you feel?

If you don't have a special needs child, are you afraid to say the wrong thing? If you do have a special needs child, tell us what you wish others would say or do?