Hi. My dss is 9yo. and has cerebral palsy pretty bad. He cannot walk, talk or see. When we are out in public around or around people who dont know him, people are always polite, and want to meet him. I think that is wonderful, but I always feel like I have to explain. They think he may answer them, or look at them, or respond to them, and he dont. I guess I was just wondering if you guys knew of a way I could 'explain', without having to explain. I know people want to be nice, and thats great, but they always ask questions, and sometimes it seems awkward. Do any of you understand what I mean?

By Bobbie~moderatr on Sunday, October 3, 2004 - 12:33 am:

I sure do understand. I am going to bump this to the top so the other mom's will get a chance to reply.

As far as suggestions I would just leave it simple. Most people don't fully understand the depths of a condition unless they have lived it. I would probably just tell them, "This is (dss name), He has CP and he really loves to meet new people." If they ask questions give simply answers but let them lead you as to your replies. Most will probably just be happy with the response of his condition. Hope someone else has better advice... Big hugs to you.

By Karen~moderator on Sunday, October 3, 2004 - 09:59 am:

Good suggestion, Bobbie, and you might add this: "He cannot answer you, but he hears you and knows you are here."

By Kaye on Monday, October 4, 2004 - 09:47 am:

i don't know the right answer here, but just a couple of thoughts. How does your son really feel? do you think he enjoys meeting people, or is he indifferent? Does your son understand what people say around him? If so you need to be careful what you say. In general I am against labeling a child with his disablity, I don't introduce myself as Hi I am Kim and I am an unorganized slob..LOL. Certainly there is a time and a place that a label is needed, but I think I would just say, this is my son chris, he isn't able to greet you, but would love to be greeted. Yes people probably want to know "what is wrong", but nosey people can cope. I am one of those people and I will sometime ask, really just out of curiosity but sometimes because I feel like I can help out more by understanding their battle more (for example I have a very good friend whose child has cp also, she is completely tube fed, physically has the abilities of a 5-6 month old, she is almost 9, we have been through alot with her, so I do get what you are going through). The other thing I think people want to hear is , you can't catch this, as a society we are smarter than that, but still I guess we worry that you never know what caused it. Good luck and I hope you get some better advice!

By Cakekisses324 on Monday, October 4, 2004 - 08:56 pm:

Thanks guys.

By Melanie on Friday, October 15, 2004 - 12:06 pm:

My son plays football. The other day I was chatting with the mom of one of his teammates and her younger son walked up to her. I smiled at him and said hi and his mom said with a big, proud smile, "He's nonverbal, but he's the most loving boy in the world". That's it. I still don't know what his diagnosis is, but it doesn't matter. She gave me the information she needed to and there was no need to go further with it. I think Bobbie and Karen's combined suggestion is perfect.

By Marcia on Saturday, October 16, 2004 - 12:03 pm:

I have lots of kids with special needs. One uses a wheelchair and is non verbal, one has global delays and is non verbal, and my sweet Angel Sonja had severe cp, was tube fed, etc.
I always welcome people who come up to them to chat, because they can't initiate the contact themselves. Most adults are polite, and don't ask questions. Kids always ask why they can't walk, talk, etc, and I just explain that their muscles aren't strong enough, so they get to use chairs to move around. That's always enough info for kids.
If people are rude and ask the dreaded "what's wrong with her" question, I simply say something like "she looks fine to me". Or "what does she have?", which I feel is none of their business, "a family and lots of friends who love her", or something else along the same line.
When people stare and say nothing at all, I make sure it's obvious that my child is enjoying her life. Positive role modelling is the best any of us can do.
A big thing to remember, is never talk about your child as if she/he isn't there. Always include the child in the conversation, whether or not the child can speak. When people ask if she can understand, I tell them that I assume she can.
I truly believe that everyone should be treated with the same respect, no matter what their needs are.
LOL Kim the slob. That's me to a t!!!!