Children with Deformities

Hello
My daughter who is now almost five was diagnosed with Poland Syndrome at the age of two. She is missing her pectoral muscle on the left side. She is very active and only when she wears sleevless shirts can you even notice her chest.
My daughter will probably need plactic reconstructive surgery when she goes through puberty. We see a plastic surgeon yearly and have been told she will probably not have a developes breast. Hang in there with your Son. For a child going through all that is very hard.

Please, please, please don't put off talking to a counselor. If he's mentioned you being better off without him even once it's too many. A kid his age shouldn't even be close to thoughts like that. Unfortunately, peer pressure can be a huge problem and he's starting to worry about things he shouldn't have to. Most kids are too soon these days. Keep stressing how much you love him and can't imagine your life without him.

E. -
You know I agree with another person that talking to a counselor would be a good idea. However I know he has a specific diagnosis, but has he been around other physically challenged children outside of a hospital or therapy setting? If you live near a large city there are so many support groups and not only children and their parents but adults who have made it through the pre-teen and teenage years. Give him encouragement through others success and that you as a family will always be there for each other and if he can do all those activies as a child, what won't he be able to do as a young adult in the not so distant future.

See if there is a program in your area where he can volunteer with special needs kids. (i.e. special olympics, big brothers).. Or volunteering with older people, or a food bank, or a soup kitchen .. anywhere someone needs his help - not related to school.. kids his age are CRUEL.

It's amazing, though, how much taking the focus off of SELF makes one so much less self-conscious.

BTW - is he in boyscouts? That's another thing that may help him considerably.

I have a 16 years old boy, who's ,missing 3 right side ribs and both pectoral muscles. Plays baseball and golf, about 2 years ago he asked for the very first time about corrective surgery, we went to our family therapist and he accepted this body the way god made it.

So the sooner you seek help the better.

I work with special needs children inside a regular pre-k classroom in Del-Valle ISD. I think counseling would be a great idea. Be sure you find someone who specializes in pre-teens . Also, be sure you find someone who does counseling and does not just want to medicate your child. He does need some extra support if he is saying the things he is saying about costing you too much money and you being better off without him. Good luck. J. K.

Hi E.! I just read this and it sounds to me like you are an awesome mother. I would not just let this slide. I would definitely get him to talk to someone. He is entering the teen years soon and it might get harder for him. Just keep telling him what a blessing he is and keeping loving him like you do. A counselor is a great idea. Sorry, I don't mean to sound like I am telling you what to do...Good luck and please update us!

ok, the first thing I suggest you do is address his worries about the money. Why is he so worried about it? Ask him if he wants the surgeries. Does he absolutely have to have them? Does HE feel he can comfortably live without them? If he feels that he is comfortably living an active life as he is...why try to make him any different?

Your son is smart. Sit down and talk with him about the entire situation. Since this is his body, he should be involved with the decision making about it. If you treat him like an equal in this matter, he'll feel that he has more control over his life. This will give him comfort when he's feeling insecure.

I am blind in my right eye and don't have much control over which way it goes. All of my life when I talk to someone, they look around behind them thinking I'm looking elsewhere. This hasn't stopped me from living a full life. My depth perception is out of whack, but I still played sports. I still drive a car. I have kids and go to college. Granted, my physical defect may not be as extreme as your son's...but I still haven't let it stop me from doing anything. If your son can do everything he wants to do...don't change him.

I wish you all the best of luck.

Love, Light, & Laughter...
K. L.

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(((HUGS))))

You sound like a great mom. My advice is to meet with a children's counselor/psychologist to get some insight on the best way to help him. (I'm not necessarily saying he needs to get counseling, but you need some assistance on what to say.)

I would never say anything about how much his condition costs, truthfully he shouldn't be aware that it is expensive but I'm sure he is a smart 11 year old and can figure it out. Tell him you love him often.

His comments about the family being "better off without him" should be taken very seriously. Although he probably is not, it could be a sign of feeling suicidal. I would talk to the counselor about this. It might even be a good idea for him to sign a contract saying he would never hurt himself without talking to you or a trusted adult first.

I'm sure you already know this, but there is this website: http://groups.msn.com/PolandsSyndromesupportwelcome/_home...
(and I'm sure others) for support for parents with children with Poland's syndrome. There's a "teen talk" area too. You might also look on cafemom. Maybe start a group if there isn't one.

There might even be a summer camp out there for teens with this condition.

(((HUGS))) Hope this helps!!!

I would definately get him into counseling immediately!

Why does he think he's costing you a lot of money? Are you or your husband stressed about the finances and is he seeing this or is he the sensitive type? Either way I would get him in to see someone right away. Waiting could be detrimental.