My son has CP and is very tiny for 3 yrs old. He gets a lot of stares. I usually just smile, but some people point and are just rude. Has anyone delt with this, and what do you do?
Thanks! Julie

I so feel for you rude people really really get my goat.

I dont really know what to suggest to you Julie and i know others on the board will have a smart answer for you.

My way would be to kill them with kindness but unless they start a converstion with you its hard to get an opening.

My mother has a great line in what we call here
the "drop dead raised eyebrow look"

Unfortunately we cant ligislate for other peoples inconsiderate behaviour therefore I would be tempted to ignore them unless they upset my child and then they can watch out.

Big Hugs Julie

Anne

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Julie, I'd like to ask your advice along this thread. I have a son with Aspergers, so I do know how rude people can be, and I don't want to be like that, yet I would like to be a "nice stranger". I'm never sure if I would offend or not. If I see someone in a wheelchair w/CP or similar, is it OK to smile, say hi and try to talk to them? I was at a museum recently on a busy day and this little boy was in the wheelchair, kind of in his own world, sucking on a cloth - I'm sure that was a sensory issue, as my son has that also, just not severe in that everyone sees it. I looked at him and smiled. But I never want to intrude. What would you as a parent find acceptable? Should I just not do or say anything at all? A lot of people just look away because they don't want to stare rudely, but to me, that would make the child feel invisible or that they were bad to look at. It's not that I'm curious, I think that it's more that I would like to make the little person happy with a smile and greeting, and I'm trying to teach my children to make others, especially those less fortunate, happy and included. Knowing how isolating this can be for a parent, I would also like to talk with the parent (she seemed really nice in this case), and let her know that I can relate even a little.

As far as the stares and pointing, what if you smiled and said, "Would you like to say hi?" and see their reaction. At least they would know they were noticed.

I would love for people to treat him like person. Marcus loves when people talk to him and say hi. He smiles and does a little wave.
I wonder the same thing. I will see a child in a wheel chair and want to bond with the other person.
Marcus has low tone CP called hypotonia. We just found out he has water on his brain. He was born at 28 weeks and he is still very small and quite thin for being 3 years old. I have had people come up to me and ask me if I am feeding him enough. This BREAKS my heart, because it is such a constant struggle to keep weight on him I am still up every 3 hours giving him a bottle. He is not able to eat solids, so peole ask me why he still has a bottle.He has the potential to asperate and swallow issues. When people ask questions they are not nice, they ask in a way that I am not doing what i can for him. I would love for someone to come up to us and just be nice. I don't think it is a lot to ask. Why are people so "all knowing" I would love for one of those people to walk a day in our shoes. I am sorry, it has been a very difficult 3 years, in and out of doctors. We JUST got the CP diagnosis. I wish I had a comeback for some of the rude remarks, but I tend to take it on and just want to cry. I guess I need to toughen up for Marcus. My baby can't walk, crawl, and can only sit up for minutes at a time. He can not speak, and is learning some sign language. It is very hard because I feel alone. When people are rude it breaks my heart. Thanks for caring, and any advice would be appreciated.

http://www.babycenter.com/dilemma/ba...t/1266324.html

Try that link, it has other moms discusing the same thing. Also I would look up Cerebral palsy - teens. Usually kids that have gone through it have the best answers. Parents can only imagine how their child must feel. Someone with CP can help your son better than anyone else.

I know Many mom's I have meet through my autism groups have used cards similar to business cards. On them it says I am not rude or spoiled, I have Autism, I can not control my emotions. Please be paitient with me. Or something similar. You could do something like that with your son. I can't imagine that people can be that rude. Like it is there business anyway.

Hang in there, You are going to have to have a tough skin on the outside. But, Just know you have us to lean on when it gets too rough.
Big Hugs!
Mitzi

Hi Julie,
My son also has CP and was born at 27 weeks. He is 8 now. When he was younger we did lie about his age and chop off 6 months to a year so that the complete strangers would not comment on his size or lack of milestones. Now he has grown to a pretty normal size, he is about average in school size-wise. People can be pretty rude, intentionally or not, and as a parent it cuts like a knife through the heart.

Now, DH has been known to say to people who stare TOO long "Take a picture it lasts longer" and stuff like that. But he can be pretty aggressive which is not my style.

Last week we went to Miami Beach, which is near us but ritzy enough to feel like a vacation for the day. So we wheel DS down to the beach and then we want to take some pics, maybe for a Christmas card or something. Now, Dh is trying to get DS out of the wheelchair, and for some reason we had a couple of people eyeing us. Well, Ds gets out and stands (he can walk, just not for distances) Anyhow, DH yells at the top of his voice "OMG!He's healed ! Praise the Lord! My poor crippled son is walking! He's walking!" on and on...I was dying of laughter and so was DS, and my youngest DS too. People were looking like they didn't know if he was serious or what and then just moved on.

Now that DH is older he will say "What you lookin' at?" or something equally snarky. Now mind you he does not do this to any old person that looks at him, just people that he feels, I guess, have gone too far. Also, people will ask him what's wrong with him, or other questions on that line, and he sometimes answers, other times he says "I don't want to discuss that with you." He talks like a little adult, which also disarms people a bit.

I work at DS' school and sometimes I just feel like crying when I see kids copy his gait or stare. I remind myself they are kids. But with adults I do have less patience. Sometimes I just walk away now if I get a rude question/comment, and pretend I don't hear. I would suggest that you take a position on how you can respond to a variety of situations, so you are prepared.

And, also, I really try to focus myself and DS and our whole family on the good things that come along with the package...like I LOVE disabled parking, we have met lots of nice people through therapies and doctors, etc that have enriched our lives, we got to learn how to take good care of our son in the NICU before we took him home (I probably would have diapered his head if he had been born at term. The nurses taught me EVERYTHING)... keep a positive core in your family and the negativity and rudeness of others will bounce off you.

Sorry this was so LONG!

Liz

Thank you! I am so glad a special needs section was started!!

Hi. Your post to Julie+6 left me with a question. You mentioned how the kids in school copy your child's gait, etc., and that you remind yourself that they are kids. I'm a pretty direct person, so I have a question: Personally, I would stop the kids, take them aside and just nicely, politely, explain how that can make a person feel. Even if the physical body is not working like others, our children still have feelings and a brain that works. They may thing it's not noticed by the child; that they are safe. I would ask them how they would feel if they were in an accident where they couldn't talk or move, but those around them were talking about them. Try to put themselves in the less fortunate child's shoes. We never know what could happen to us. I know it's seems frightening, but it is. I simply am tired of bullies and kids who ridicule getting treated with velvet gloves. It is usually through ignorance they do this, and they need educating. Your thoughts (and others, including typical children's parents?)?

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My dd Lily is not quite 3, and she actually had a tracheostomy for 18 months. Let me tell you, we got a LOT of stares and questions from people. The thing that I think bothered me the most were the pitying looks people would give us. Or the ignorant comments about how all of our troubles would be gone once the trach came out. I tend to be pretty patient though, and I would respond to people very honestly and matter-of-factly. I had a grandpa at the park ask me what the "apparatus" in my child's neck was. So, I told him she has a trach tube that stints her airway open because the cartilage in her airway is very soft and collapses easily. She's had the trach out for almost a year now, but due to her airway issues, she still sounds really croupy when she coughs, and boy, do I get looks from other people when we're out, and she coughs like that! I don't think I've ever had anyone come up to me and question my parenting skills or be out-and-out-rude, like you've had, but most people are just curious, so I briefly explain, and sometimes we'll have really nice conversation, and sometimes that's that.

Probably the funniest thing that happened though, was one time at church I was putting some formula in her g-tube using a syringe (we were at the potluck downstairs in the fellowship hall), and a kid who was probably about 10 or 12 was sitting across from me. He asked what I was doing, and I explained that she'd been very sick as a baby and didn't really know how to eat food yet, so this was how she ate, and he just totally seriously said, "COOL!" It was hysterical!!

That kid and his attitude are also cool. That was what I was afraid of, on my previous post on this thread. If I talk to the kids in the wheelchairs, I don't want the moms to think it's out of pity, but more out of wanting to include them, maybe make their day not so lonely, and try to show my kids how to act. That is why I'm asking those parents who have visibly non-typical kids how I should approach their child. In no way do I want to offend. My little guy doesn't know yet that he is a Special Needs child, but I, too, don't want him pitied. Yet, I'm leaning toward him letting his classmates know so they're not so quick to judge him. We're not ready yet, but I think the day will come.

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