If the physical differences your child has because of the condition of SA/CRS appear to cause bullying or staring, there are 5 things that parents can do to help a child cope with uncomfortable situations.
1.) Model the options listed below. Your child learns from you how to respond to people who are rude or who say inappropriate things.
2.) Talk to your child about the options listed below and practice them together. Let your child know that it is possible to gain control in a situation that seems intimidating.
3.) Involve your child in activities with other children and adults who have physical disabilities such as summer camps, disability sports leagues, and pen pal connections. These experiences build self esteem. Just as you did not want to feel as if you were all alone when you received the diagnosis about your child, your child does not want to feel all alone in living with a physical disability.
4.) Avoid using negative language when talking about your child’s disability. Growing up hearing descriptions of yourself that include words like “suffers from”, “limited”, “can’t”, and “dependent on” may be cause a child to have a “broken” self image. Focus on what your child can do. The challenges we all face in life help make us good problem solvers, and the world really needs good problem solvers.
5.) Let your child know that all kids get teased for one reason or another. There are options for responding that are good to know and use. You and your child do have options. You don’t just have to be at the mercy of the people confronting you.
Options to deal with bullying:
Option 1: Initiate friendly conversation
Let’s say a kid is staring rudely. You have the option to just break the ice and say ‘hi, what’s your name?” Sometimes the kid will run away, and sometimes the kid will respond back. I’ve actually made a couple of good friends just by being friendly.
Option 2: Educate
You don’t have to explain anything to anybody if you don’t want to, but if you want to raise people’s awareness, you can. Let’s say someone walks up and says, “Hey, you don’t have any legs”. You can respond and say, “That’s right. I have a birth condition called caudal regression syndrome. It means part of my spine is missing and my legs are really small. Do you have any other questions?”
Option 3: Deflect
Let’s say a person comes up and says, “Man, it must be so hard to be handicapped”. You can say, well-let me show you how hard it is-let’s do some push ups. I bet I can do more than you can. Ready, set, go!” (by the way, I can do 50 push ups, easy) The point here is to sort of change the focus, and hopefully the perspective. If you don’t want to challenge-you can just say something like. “Hey, that’s a cool shirt you have. Where did you get it?” Or, you can make a joke-’legs!-oh my gosh, I must have lost them!” I better go look for them, bye.” It gets people off the subject of your poor, sad (yeah-I’m being sarcastic here) life.
Option 4: Challenge
Let’s say someone comes up to you and says , “Ew, you look gross”. You can respond by saying, “and you act gross- didn’t anyone ever teach you how to interact with other people in an appropriate way. Man, you are going to have a hard time in life if you don’t develop some better social skills.”
Option 5: Leave
You don’t have to hang around and put up with these people. My mom and I once just left a store because a couple of kids kept following up around with gaping stares, and we just got tired of it. We tried telling them that we didn’t appreciate it and they needed to stop. That didn’t work. If we had been able to find their parents, we would have dealt with it-but their parents were not supervising them closely and not easily found.
Having a tool box full of answers ready to respond to the most ridiculous comments and questions puts you in control of the situation and lessens the frustration. Another thing my mom did she called a reality check. I was complaining that ‘everyone’ stared. So, we got a camera and she told me we would go for a walk at the mall and I had to take a picture of anyone who stared at me. Well, I learned that really almost nobody stared. I couldn’t even get one decent photo. I had exaggerated the staring problem in my own head. Sure, some people do stare, but most people don’t. Try not to get all caught up in these frustrations.