Hello and help . My son is two months old and has PFFD and FD.Our specialist and therapist are both with Children's Hospital in Denver. Our family is doing fairly well emotionally, but my head is swirling from the medical terminology. I also have lots of questions on care, specialists,therapy, what to expect the first years as he grows and some ideas on how to deal with the looks and questions from strangers. Due to my job I deal with the public alot and my children are with me most of the time. Any help will be greatly apprectiated and thank you in advance.
Re: Hello and Help
http://www.pffd.org/node/74
Self -esteem
As the mother of four I have always tried to build my kids self-esteem. Like using the 100 words to praise a child . But to me building up a kid with pffd has been the most challengeing . My three year old is one of the brightest kids I've ever known and thats not just because she's mine but I truly feel that these kids that have pffd have adapted coping skills at really early stages. I have just begun to really talk to Ginny about how God made her just a little more special than most kids after she questioned me about a friend of ours that has lost his arm in a motorcylce accident. When we went to the doctor the other day her 16year old brother could not understand why the doctor said Ginny needed a prosthetic brace. She looked at him and said "It's okay , you know God made me a little special like that" from the mouths of babes!
re: Self -esteem
One thing we've said to our daughter is "Some people need glasses to see better, you don't need glasses, but you need a lift to run faster."
Personal Disclosure
As you interact with the public and receive questions/comments and "looks", you will be the example for your child of how such issues should be handled. I think one of the most important factors is setting the example of the amount of personal disclosure of information that should be given. Some children and even adults will discuss their "labels" and medical information at length with complete strangers.
Also note that people in some areas of the country such as California (especially the Bay area), Miami and NYC typically ask no questions at all. While the slightest change from typical can draw a crowd in the grocery store in some parts of the Midwest.
It has been my experience that children just want to know how it happened and that it won't happen to them and if it hurts. Kids are very practical..a few questions answered briefly and they are typically satisfied. Plus they often become the authority with other kids and keep the questions from being repeatedly asked by everyone on the playground.
Adults on the other hand are typically being nosey...some need to know that something went terribly wrong (ie. mom took drugs) so they know it won't happen to their child. Of course, these are adults who are strangers. This is the fellow shopper or the receptionist at the dentist office. Adults will say the most awful things so I would strongly suggest short answers. Some adults simply want to give an encouraging word, but even their encouraging words can have negative meanings.
Adults who stare are just too cowardly to ask questions and adults who ask questions generally have a fragile sense of life so handle them with care.