Re: emotional changes & Camp Barnabas

[Guest guest]

Hi ,

basically as i can see it this camp is the adults equavilent to the may conference. How many people here think that the conference is invaluable?! Although the camp isnt just made up of kids with PSC or even liver disease they will all have things in common - pain, fatigue, thoughts of their future etc..

I recently have been going to an expert patient prog here in the UK. although we all had different medical probs the amount of other things we had in common was amazing it really has helped me no end - yes ok i'm not 9 but im still a young one and have had this disease since i was 17. Plus he'll be able to have some indepence from home and have loads of fun - what could be better!!

I think the camp is a fab idea. mayb you should see what Nick thinks?Best wishes

[Guest guest]

,

I feel for you watching the changes in your son. The changes in my

daughter's personality in the year before diagnosis with UC were

incredibly painful. She went from being a little girl (4 years old at

the time) who barely noticed when I left her at the babysitter or

daycare - and who was as likely to cry when I picked her up as when I

dropped her off - to a clinging child who never wanted to be out of my

sight because she couldn't trust anyone else to make sure she made it

to the bathroom before her bowels let loose. We were very close to

sending her to kindergarten in diapers - but the emotional change was

almost as painful to watch as dealing with the medical issues.

I haven't had any experience with Camp Barnabas - but personally think

it would be a good idea. Our kids are different, and no one wants to

be different. A place like Camp Barnabas sounds like an ideal

opportunity to give your son a place where he isn't different - and

where the kids can commiserate with peers about what it is like out

there in the real world. , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Monday, March 30, 2009 10:57:09 AMSubject: emotional changes & Camp Barnabas

Hello everyone,

I have a question for you all. My son, Nick, 9years old who struggled with symptoms and problems since last fall was diagnosed with liver disease in 1/09. Since this time he has changed. But he is obviously having a bit of emotional changes.

Anyway, his teacher mentioned Camp Barnabas here in MO. Summer camp with different weeks geared towards kids with different issues. They make summer camp available to kids who would not be able to go to other summers camps without special modifications being made. They are on line and have a week for kids with chronic illness in July. Anyone have thoughts or experiences with this issue or Camp Barnabas?

[Guest guest]

,

I feel for you watching the changes in your son. The changes in my

daughter's personality in the year before diagnosis with UC were

incredibly painful. She went from being a little girl (4 years old at

the time) who barely noticed when I left her at the babysitter or

daycare - and who was as likely to cry when I picked her up as when I

dropped her off - to a clinging child who never wanted to be out of my

sight because she couldn't trust anyone else to make sure she made it

to the bathroom before her bowels let loose. We were very close to

sending her to kindergarten in diapers - but the emotional change was

almost as painful to watch as dealing with the medical issues.

I haven't had any experience with Camp Barnabas - but personally think

it would be a good idea. Our kids are different, and no one wants to

be different. A place like Camp Barnabas sounds like an ideal

opportunity to give your son a place where he isn't different - and

where the kids can commiserate with peers about what it is like out

there in the real world. , Mom to 18 yo daughter UC 6/95, PSC 3/09To: Sent: Monday, March 30, 2009 10:57:09 AMSubject: emotional changes & Camp Barnabas

Hello everyone,

I have a question for you all. My son, Nick, 9years old who struggled with symptoms and problems since last fall was diagnosed with liver disease in 1/09. Since this time he has changed. But he is obviously having a bit of emotional changes.

Anyway, his teacher mentioned Camp Barnabas here in MO. Summer camp with different weeks geared towards kids with different issues. They make summer camp available to kids who would not be able to go to other summers camps without special modifications being made. They are on line and have a week for kids with chronic illness in July. Anyone have thoughts or experiences with this issue or Camp Barnabas?

[Guest guest]

I have never been to Camp Barnabas but do know several young people and adults who have volunteered there. These counselors (and in one case a cook) have loved their time there and most go back again the next year to help.

I beleive it was featured on Extreme makeover a little while ago so many of the facilities are new which is nice.

I had UC when I was 11 til I had my colon removed in KC at age 17. The camp would have been helpful for me to deal with issues I didn't even know I had.

Blessings,

Barby - KS

UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07, married 29 years , 5 sons, ;2 daughters in law, 2 granddaughters, 1 grandson; 1 golden retriever

[Guest guest]

I have never been to Camp Barnabas but do know several young people and adults who have volunteered there. These counselors (and in one case a cook) have loved their time there and most go back again the next year to help.

I beleive it was featured on Extreme makeover a little while ago so many of the facilities are new which is nice.

I had UC when I was 11 til I had my colon removed in KC at age 17. The camp would have been helpful for me to deal with issues I didn't even know I had.

Blessings,

Barby - KS

UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07, married 29 years , 5 sons, ;2 daughters in law, 2 granddaughters, 1 grandson; 1 golden retriever

[Guest guest]

I have never been to Camp Barnabas but do know several young people and adults who have volunteered there. These counselors (and in one case a cook) have loved their time there and most go back again the next year to help.

I beleive it was featured on Extreme makeover a little while ago so many of the facilities are new which is nice.

I had UC when I was 11 til I had my colon removed in KC at age 17. The camp would have been helpful for me to deal with issues I didn't even know I had.

Blessings,

Barby - KS

UC - 1965, ileostomy - 1972, BCIR (continent pouch) 1994, PSC - 1995, arthritis 2007, tx 11.29.07, married 29 years , 5 sons, ;2 daughters in law, 2 granddaughters, 1 grandson; 1 golden retriever

[Guest guest]

,

 

I am sure the camp must deal with many such cases. I would contact them and find out how they deal with them, stories of how it has effected kids and what they suggest for answering your husband's fears.

 

Ian 

Hello everyone,

 

I have a question for you all. My son, Nick, 9years old who struggled with symptoms and problems since last fall was diagnosed with liver disease in 1/09. Since this time he has changed. He was not a strong student at the beginning of the year, but since the illness and missing school he has lost confidence in his ability. His teacher is great, and just conferenced again with us about these issues. He is moody, overly emotional, tears up but does not cry often, and is doing poorly in school. He has a best friend who is a great little buddy. They hang out a lot. But he is obviously having a bit of emotional changes.

 

Anyway, his teacher mentioned Camp Barnabas here in MO. Summer camp with different weeks geared towards kids with different issues. They make summer camp available to kids who would not be able to go to other summers camps without special modifications being made. They are on line and have  a week for kids with chronic illness in July. They also have a siblings program that our older son who is 14 could go to. Siblings have some interaction, but not all the time. Scholarship possibilities also available.

 

The problem is when I spoke to my husband about the camp he thought I was jumping the gun. He thought maybe Nick would go and see all the other sick kids and suddenly label himself as " sick " or think he is as bad off as some of the others might be. I was thinking this would show Nick that there are a lot of kids out with health issues just like him, and show him how they can, and want to get out, and try hard, and have fun to. I thought it would be fun for him to get out and do some things that he might otherwise be able to do this summer  b/c of his enlarged spleen and such.

 

I haven't even mentioned it to the kids, and my husband hasn't had a chance to look at the web site yet, but I was wanting to get some other opinions about this. Anyone have thoughts or experiences with this issue or Camp Barnabas?

 

Thanks so much,

in MO.

son, Nick (9) liver disease 09

 

 

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

,

 

I am sure the camp must deal with many such cases. I would contact them and find out how they deal with them, stories of how it has effected kids and what they suggest for answering your husband's fears.

 

Ian 

Hello everyone,

 

I have a question for you all. My son, Nick, 9years old who struggled with symptoms and problems since last fall was diagnosed with liver disease in 1/09. Since this time he has changed. He was not a strong student at the beginning of the year, but since the illness and missing school he has lost confidence in his ability. His teacher is great, and just conferenced again with us about these issues. He is moody, overly emotional, tears up but does not cry often, and is doing poorly in school. He has a best friend who is a great little buddy. They hang out a lot. But he is obviously having a bit of emotional changes.

 

Anyway, his teacher mentioned Camp Barnabas here in MO. Summer camp with different weeks geared towards kids with different issues. They make summer camp available to kids who would not be able to go to other summers camps without special modifications being made. They are on line and have  a week for kids with chronic illness in July. They also have a siblings program that our older son who is 14 could go to. Siblings have some interaction, but not all the time. Scholarship possibilities also available.

 

The problem is when I spoke to my husband about the camp he thought I was jumping the gun. He thought maybe Nick would go and see all the other sick kids and suddenly label himself as " sick " or think he is as bad off as some of the others might be. I was thinking this would show Nick that there are a lot of kids out with health issues just like him, and show him how they can, and want to get out, and try hard, and have fun to. I thought it would be fun for him to get out and do some things that he might otherwise be able to do this summer  b/c of his enlarged spleen and such.

 

I haven't even mentioned it to the kids, and my husband hasn't had a chance to look at the web site yet, but I was wanting to get some other opinions about this. Anyone have thoughts or experiences with this issue or Camp Barnabas?

 

Thanks so much,

in MO.

son, Nick (9) liver disease 09

 

 

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

,

 

I am sure the camp must deal with many such cases. I would contact them and find out how they deal with them, stories of how it has effected kids and what they suggest for answering your husband's fears.

 

Ian 

Hello everyone,

 

I have a question for you all. My son, Nick, 9years old who struggled with symptoms and problems since last fall was diagnosed with liver disease in 1/09. Since this time he has changed. He was not a strong student at the beginning of the year, but since the illness and missing school he has lost confidence in his ability. His teacher is great, and just conferenced again with us about these issues. He is moody, overly emotional, tears up but does not cry often, and is doing poorly in school. He has a best friend who is a great little buddy. They hang out a lot. But he is obviously having a bit of emotional changes.

 

Anyway, his teacher mentioned Camp Barnabas here in MO. Summer camp with different weeks geared towards kids with different issues. They make summer camp available to kids who would not be able to go to other summers camps without special modifications being made. They are on line and have  a week for kids with chronic illness in July. They also have a siblings program that our older son who is 14 could go to. Siblings have some interaction, but not all the time. Scholarship possibilities also available.

 

The problem is when I spoke to my husband about the camp he thought I was jumping the gun. He thought maybe Nick would go and see all the other sick kids and suddenly label himself as " sick " or think he is as bad off as some of the others might be. I was thinking this would show Nick that there are a lot of kids out with health issues just like him, and show him how they can, and want to get out, and try hard, and have fun to. I thought it would be fun for him to get out and do some things that he might otherwise be able to do this summer  b/c of his enlarged spleen and such.

 

I haven't even mentioned it to the kids, and my husband hasn't had a chance to look at the web site yet, but I was wanting to get some other opinions about this. Anyone have thoughts or experiences with this issue or Camp Barnabas?

 

Thanks so much,

in MO.

son, Nick (9) liver disease 09

 

 

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com

[Guest guest]

I work at a camp for kids with physical disabilities every summer and the kids there always say that camp is the only place where they feel NORMAL. Every camper has issues of some sort and the focus is on what they can do, and to find a way for them to participate in every activity they are interested in. The kids do not feel self-conscious about needing help to move around or having to take meds or any other medical issues. When they talk about their problems they all have a common frame of reference, so they understand what each other is going through. Kids need that kind of support just like everyone else.

A good camp will give your child new experiences, new skills, new friends, an a new way to look at their illness. With the internet many kids develop active friendships that expand their lives. Nick can learn that being "sick" does not define who he is.

One other benefit is the rest of the family can have a break from being caretakers. Other children can enjoy more attention from their parents, and parents can plan activities that might be too stressful for the challenged child, or have some time to just relax.

If your son wants to try it, I say-Go For It!

Take Care

MizKit

emotional changes & Camp Barnabas

Hello everyone,

I have a question for you all. My son, Nick, 9years old who struggled with symptoms and problems since last fall was diagnosed with liver disease in 1/09. Since this time he has changed. He was not a strong student at the beginning of the year, but since the illness and missing school he has lost confidence in his ability. His teacher is great, and just conferenced again with us about these issues. He is moody, overly emotional, tears up but does not cry often, and is doing poorly in school. He has a best friend who is a great little buddy. They hang out a lot. But he is obviously having a bit of emotional changes.

Anyway, his teacher mentioned Camp Barnabas here in MO. Summer camp with different weeks geared towards kids with different issues. They make summer camp available to kids who would not be able to go to other summers camps without special modifications being made. They are on line and have a week for kids with chronic illness in July. They also have a siblings program that our older son who is 14 could go to. Siblings have some interaction, but not all the time. Scholarship possibilities also available.

The problem is when I spoke to my husband about the camp he thought I was jumping the gun. He thought maybe Nick would go and see all the other sick kids and suddenly label himself as "sick" or think he is as bad off as some of the others might be. I was thinking this would show Nick that there are a lot of kids out with health issues just like him, and show him how they can, and want to get out, and try hard, and have fun to. I thought it would be fun for him to get out and do some things that he might otherwise be able to do this summer b/c of his enlarged spleen and such.

I haven't even mentioned it to the kids, and my husband hasn't had a chance to look at the web site yet, but I was wanting to get some other opinions about this. Anyone have thoughts or experiences with this issue or Camp Barnabas?

Thanks so much,

in MO.

son, Nick (9) liver disease 09

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[Guest guest]

I work at a camp for kids with physical disabilities every summer and the kids there always say that camp is the only place where they feel NORMAL. Every camper has issues of some sort and the focus is on what they can do, and to find a way for them to participate in every activity they are interested in. The kids do not feel self-conscious about needing help to move around or having to take meds or any other medical issues. When they talk about their problems they all have a common frame of reference, so they understand what each other is going through. Kids need that kind of support just like everyone else.

A good camp will give your child new experiences, new skills, new friends, an a new way to look at their illness. With the internet many kids develop active friendships that expand their lives. Nick can learn that being "sick" does not define who he is.

One other benefit is the rest of the family can have a break from being caretakers. Other children can enjoy more attention from their parents, and parents can plan activities that might be too stressful for the challenged child, or have some time to just relax.

If your son wants to try it, I say-Go For It!

Take Care

MizKit

emotional changes & Camp Barnabas

Hello everyone,

I have a question for you all. My son, Nick, 9years old who struggled with symptoms and problems since last fall was diagnosed with liver disease in 1/09. Since this time he has changed. He was not a strong student at the beginning of the year, but since the illness and missing school he has lost confidence in his ability. His teacher is great, and just conferenced again with us about these issues. He is moody, overly emotional, tears up but does not cry often, and is doing poorly in school. He has a best friend who is a great little buddy. They hang out a lot. But he is obviously having a bit of emotional changes.

Anyway, his teacher mentioned Camp Barnabas here in MO. Summer camp with different weeks geared towards kids with different issues. They make summer camp available to kids who would not be able to go to other summers camps without special modifications being made. They are on line and have a week for kids with chronic illness in July. They also have a siblings program that our older son who is 14 could go to. Siblings have some interaction, but not all the time. Scholarship possibilities also available.

The problem is when I spoke to my husband about the camp he thought I was jumping the gun. He thought maybe Nick would go and see all the other sick kids and suddenly label himself as "sick" or think he is as bad off as some of the others might be. I was thinking this would show Nick that there are a lot of kids out with health issues just like him, and show him how they can, and want to get out, and try hard, and have fun to. I thought it would be fun for him to get out and do some things that he might otherwise be able to do this summer b/c of his enlarged spleen and such.

I haven't even mentioned it to the kids, and my husband hasn't had a chance to look at the web site yet, but I was wanting to get some other opinions about this. Anyone have thoughts or experiences with this issue or Camp Barnabas?

Thanks so much,

in MO.

son, Nick (9) liver disease 09

Need a job? Find employment help in your area.

[Guest guest]

I work at a camp for kids with physical disabilities every summer and the kids there always say that camp is the only place where they feel NORMAL. Every camper has issues of some sort and the focus is on what they can do, and to find a way for them to participate in every activity they are interested in. The kids do not feel self-conscious about needing help to move around or having to take meds or any other medical issues. When they talk about their problems they all have a common frame of reference, so they understand what each other is going through. Kids need that kind of support just like everyone else.

A good camp will give your child new experiences, new skills, new friends, an a new way to look at their illness. With the internet many kids develop active friendships that expand their lives. Nick can learn that being "sick" does not define who he is.

One other benefit is the rest of the family can have a break from being caretakers. Other children can enjoy more attention from their parents, and parents can plan activities that might be too stressful for the challenged child, or have some time to just relax.

If your son wants to try it, I say-Go For It!

Take Care

MizKit

emotional changes & Camp Barnabas

Hello everyone,

I have a question for you all. My son, Nick, 9years old who struggled with symptoms and problems since last fall was diagnosed with liver disease in 1/09. Since this time he has changed. He was not a strong student at the beginning of the year, but since the illness and missing school he has lost confidence in his ability. His teacher is great, and just conferenced again with us about these issues. He is moody, overly emotional, tears up but does not cry often, and is doing poorly in school. He has a best friend who is a great little buddy. They hang out a lot. But he is obviously having a bit of emotional changes.

Anyway, his teacher mentioned Camp Barnabas here in MO. Summer camp with different weeks geared towards kids with different issues. They make summer camp available to kids who would not be able to go to other summers camps without special modifications being made. They are on line and have a week for kids with chronic illness in July. They also have a siblings program that our older son who is 14 could go to. Siblings have some interaction, but not all the time. Scholarship possibilities also available.

The problem is when I spoke to my husband about the camp he thought I was jumping the gun. He thought maybe Nick would go and see all the other sick kids and suddenly label himself as "sick" or think he is as bad off as some of the others might be. I was thinking this would show Nick that there are a lot of kids out with health issues just like him, and show him how they can, and want to get out, and try hard, and have fun to. I thought it would be fun for him to get out and do some things that he might otherwise be able to do this summer b/c of his enlarged spleen and such.

I haven't even mentioned it to the kids, and my husband hasn't had a chance to look at the web site yet, but I was wanting to get some other opinions about this. Anyone have thoughts or experiences with this issue or Camp Barnabas?

Thanks so much,

in MO.

son, Nick (9) liver disease 09

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[Guest guest]

,

Hi. I hope this message finds you well.

I think what you're suggesting sounds like a great idea if your boys are up for

it. You mentioned that there was a possible objection about the camp making

your son feel more like an outcast or a sick kid. I can understand where that

fear comes from, but I can also tell you that I would guess nothing would be

further from the truth. I don't know if this will make sense or not, and

clearly I'm not a 9 year old boy (although most of them are taller than me...)

Anyhow, before I attended my first PSC Partners Conference, I felt that it was

going to make me feel worse, that I'd have to come face to face with how

horrible everything is and that I'd feel more miserable and even more sick from

having to spend three days doing nothing but talking about it and hearing about

it and being surrounded by and living with the reality(ies) of being a PSCer.

Fast forward to the conference and I found I couldn't be more wrong. The

conference gave me a chance to meet people who are going through the same things

I do. We could share, we could commiserate, we could laugh and cry and we could

(and did) bond in ways that simply aren't possible with people who don't truly

know the kinds of things we deal with on a day to day basis. I'm now one of the

biggest supporters of people attending conferences. I would encourage everyone

and anyone to do it.

I would think camp would give your son(s) the same kind of opportunity. They

may have to face some hard truths, but they just might come out stronger,

feeling more emotionally secure and happier for the experience. What a gift to

give to a little boy, to let him know he's not all alone out there in the world

and despite the things that make him different he can do anything, including go

to camp, make friends and live his life on his terms.

Whatever you do decide, I'm sure it will be the best decision for your family.

If your boys do decide to attend the camps though, will you let us know how it

worked out?

Best of luck to you in whatever decision you make!

Sandi in VA/Rochester