Mentoring for celiac kids

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

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

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

February 1, 2006

Way to go coach!!! He sounds like a keeper and I think your idea is great.

Mentoring for celiac kids

> 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

>

February 1, 2006