Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 There's something I've been tossing around in my head for a while, and I thougth I'd share it with this group and see what other ideas emerge. Background: My son was diagnosed as celiac at age 4, 3 months after I was. He'd already seen the diet, heard me ask the question and accepted it pretty well. Time passed, and things weren't handled well by his school, and he had different food at parties, etc - all the usual stuff celiac kids face. He began to really dislike the diet's restrictions. About a year ago, he joined a swim team. At the first practise, the coach told the kids there'd be a treat after the lesson. My first thought was " Oh great, more junk food can't eat " So while the kids were towelling off, I approached the coach and said that had some food " allergies " and could he tell me what the treat was? The coach asked what the allergies were, and I began my careful explanation of he can't eat things with wheat, or baked goods, or some kinds of candy... The coach interrupted: " You mean he's celiac? So am I. " I just about fell out of my sneakers with joy! Getting to the point: having an (young) adult outside the family who is celiac in his life has really helped my son's perspective on celiac, and it had become a type of emotional support for him that a parent just can't give. It has helped him develop a very positive perspective on food and sharing - now every time I bake, Joh wants to make sure we take some for Coach. I would wish similar support for other celiac kids, especially the newly diagnosed. Has R.O.C.K. ever considered putting together some sort of mentoring program specifically designed as a support system for kids? Would there be some way to link kids together, either through R.O.C.K. events or an online buddy system? Ideas? Comments? Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 I was just going to post to the list to see if anyone had any kids that are close to my kids ages that would like to be online buddies! Since we are brand new at this, and my kids are still in the bargaining stages, I thought it would be a good idea to find someone else in their shoes. We are in a small town, and there is NO ONE else for them to talk with that is in their shoes. Put it this way, I went to the health food store (hole in the wall that it is!) yesterday just to see what they have, and explained what was going on in our little world, and he had never heard of it before. (!!) So, anyway! If anyone has any kids that would like to talk to a DD who's 15, and a DS who's 12 please let me know! Margie RIn South Central PA...on the Mason Dixon Line There's something I've been tossing around in my head for a while, and I thougth I'd share it with this group and see what other ideas emerge. Background: My son was diagnosed as celiac at age 4, 3 months after I was. He'd already seen the diet, heard me ask the question and accepted it pretty well. Time passed, and things weren't handled well by his school, and he had different food at parties, etc - all the usual stuff celiac kids face. He began to really dislike the diet's restrictions. About a year ago, he joined a swim team. At the first practise, the coach told the kids there'd be a treat after the lesson. My first thought was "Oh great, more junk food can't eat" So while the kids were towelling off, I approached the coach and said that had some food "allergies" and could he tell me what the treat was? The coach asked what the allergies were, and I began my careful explanation of he can't eat things with wheat, or baked goods, or some kinds of candy... The coach interrupted: "You mean he's celiac? So am I." I just about fell out of my sneakers with joy! Getting to the point: having an (young) adult outside the family who is celiac in his life has really helped my son's perspective on celiac, and it had become a type of emotional support for him that a parent just can't give. It has helped him develop a very positive perspective on food and sharing - now every time I bake, Joh wants to make sure we take some for Coach. I would wish similar support for other celiac kids, especially the newly diagnosed. Has R.O.C.K. ever considered putting together some sort of mentoring program specifically designed as a support system for kids? Would there be some way to link kids together, either through R.O.C.K. events or an online buddy system? Ideas? Comments? Maureen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2006 Report Share Posted February 1, 2006 > > So, anyway! If anyone has any kids that would like to talk to a DD > who's 15, and a DS who's 12 please let me know! > > margie---i have 3 girls that are newly diagnosed. one will be 11 this month, and the other 2 are 14 1/2 year old twins. we live in a small town in southern idaho. we don't know any other kids with celiac. they have a friend who's mother has celiac, and she is a friend of mine, so i knew some about celiac before i knew my kids had it. i would love for my girls to talk to someone else that is dealing with the same thing. i am really worried about one of the twins---she isn't eating much and seems to be depressed. all three girls are like toothpicks. christine Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 2, 2006 Report Share Posted February 2, 2006 I think it is a great idea! When I was younger (maybe 12-16), my gastroenterologist would refer newly diagnosed patients to me. It was sort of like mentoring. We would give tips and recipes. But i think it would be great to have a mentoring program in place!! If you can do it, I would love to be a part of the prgram. ~ in NH > > There's something I've been tossing around in my head for a while, and > I thougth I'd share it with this group and see what other ideas emerge. > > Background: My son was diagnosed as celiac at age 4, 3 months after I > was. He'd already seen the diet, heard me ask the question and > accepted it pretty well. > > Time passed, and things weren't handled well by his school, and he had > different food at parties, etc - all the usual stuff celiac kids face. > He began to really dislike the diet's restrictions. > > About a year ago, he joined a swim team. At the first practise, the > coach told the kids there'd be a treat after the lesson. My first > thought was " Oh great, more junk food can't eat " So while the > kids were towelling off, I approached the coach and said that had > some food " allergies " and could he tell me what the treat was? The > coach asked what the allergies were, and I began my careful > explanation of he can't eat things with wheat, or baked goods, or some > kinds of candy... The coach interrupted: " You mean he's celiac? So am > I. " I just about fell out of my sneakers with joy! > > Getting to the point: having an (young) adult outside the family who > is celiac in his life has really helped my son's perspective on > celiac, and it had become a type of emotional support for him that a > parent just can't give. It has helped him develop a very positive > perspective on food and sharing - now every time I bake, Joh wants to > make sure we take some for Coach. > > I would wish similar support for other celiac kids, especially the > newly diagnosed. > > Has R.O.C.K. ever considered putting together some sort of mentoring > program specifically designed as a support system for kids? Would > there be some way to link kids together, either through R.O.C.K. > events or an online buddy system? > > Ideas? Comments? > > > Maureen > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.