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Crohn's Disease Forum » Support Forum » Partners, Family, Friends & Caregivers » Supporting my son to understand my disease


07-15-2012, 12:31 AM   #1
Earthsoul
 
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Supporting my son to understand my disease

I want to help my 5 year old son to understand why is mummy is sick so often so I am going to get together (with his assistance) a crohns awareness scrapbook. Does anyone else have any ideas on helping him understand but also cope with his emotions around having a poorly mum!
07-15-2012, 12:44 AM   #2
Jennifer
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This may or may not help but I'll throw it out there. My parents have 4 kids and 2 have Crohn's. So the roles are reversed here but it may still apply. We had family counseling so everyone understood what was going on and so everyone had a safe place to talk if they had something on their mind but didn't want to say it at home. Having the therapist there helped us say what we needed/wanted to say or ask. Looking back on it (I was 9 at the time and am 30 now) I believe it was helpful.
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07-15-2012, 01:01 AM   #3
DustyKat
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Hi Earthsoul,

There is a wonderful children's book about Crohn's called Toilet Paper Flowers. This is quote describing the book...

Julia, who suffers from Crohn’s disease, explains living with this chronic and sometimes debilitating illness to her new friend. Because she uses the bathroom so often, Julia creates flowers using toilet paper. By sharing her flower creations, Julia gains support and understanding from her friend. Toilet Paper Flowers has an introduction for parents, web resources, explanations of the disease and treatments, glossary, and instructions for making the flowers. This book offers hope and validates feelings of children struggling with Crohn’s disease, as well as educating siblings and friends unfamiliar with this chronic illness.

http://www.amazon.com/Toilet-Paper-F.../dp/0929173473
...perhaps this book would be a good way to introduce information about your illness to your son.

Here is a link to an article entitled...UNDERSTANDING THE IMPACT OF
INFLAMMATORY BOWEL DISEASE ON PARENTS AND THEIR CHILDREN...

http://www.york.ac.uk/inst/spru/pubs...weldisease.pdf

It is quite lengthy but interesting. If you scroll down to page 52 there is a section about talking to children and how parent's dealt with that and the outcomes.

Also have a look at the sticky in the Parent's with kids forum...Must Read Valuable Resources for Parents...I know most won't be applicable to your situation, as in it is for kids with IBD, but there my well be something contained within the links that will be useful plus you may be able to turn it around to fit what you need. I say that because I don't remember a lot of what has been posted!

http://www.crohnsforum.com/showthread.php?t=35679

Good luck hun, and bless your little boy......with a Mum as fab as you I'm sure he will be just fine.

Dusty. xxx
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07-15-2012, 01:14 AM   #4
Earthsoul
 
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thanks for the swift replies!
I am going to look at the links as soon as I can!
I was being sick the other day, my partner was out working late (he is a farmer and they were cutting hay), and my little boy shut himself in the front room so he couldn't hear me vomiting, it kind of hit me then that he is not able to deal with it.
He is such a kind little boy, when I have been in bed feeling rough he has said lovely things and been really caring, playing quietly next to the bed or cuddling up to me.
I guess I want him to understand what is going on so it helps him cope better.
I think counselling is a good idea but it is difficult to get in my area (very rural!!).
We are watching ice age together right now
07-15-2012, 02:28 AM   #5
Jennifer
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Hearing your mom vomit is hard at any age, especially when you don't know why. My mom used to vomit every morning for years but even she didn't know why. Her doctors I guess blew it off saying it was because of the medication she was on. Even anti nausea meds didn't help. About a year ago she was finally diagnosed with type 2 diabetes. Once she was on the right meds, followed a diabetic diet and increased her exercise, she stopped vomiting. Her blood sugar was over 400. Dunno how long it was that high but its now at a normal level thankfully.

She still vomits from time to time but its not as scary as it was before because now we know why, its caused by the meds for her diabetes now. :P Anti nausea meds usually help now though.

Once your son has a better understanding of why you're vomiting he should be able to cope with it better. I also hope that you're getting the right help to get your symptoms under control so YOU can start feeling better.
07-15-2012, 04:03 AM   #6
Cross-stitch gal
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I wonder about the possibility of some sort of group for kids of parents with IBD. Sometimes if you get little ones together things will come out about fears that you normally wouldn't hear of them saying to an adult. It'd be wonderful if someone might know of something like that...

You've given me another idea what to write my local congressman about Already planning on asking about easier access to bathrooms within the US. Will see what she might be able to get going for us...
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07-15-2012, 04:32 AM   #7
Earthsoul
 
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so happy I have given you an idea!!!!! makes me smile, anything that makes changes for the best has to be good!!!!
07-15-2012, 04:42 AM   #8
Cross-stitch gal
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Always have wanted to help children. Originally wanted to go into counseling for kids but couldn't pass the classes in college. Would love to run on this, but probably a better idea to see about how to get something like this going first.

However, it could be by volunteer. Maybe one or two of us with this challenge willing to be in there to answer questions they might have. Along with maybe a local doctor/GI to help explain what happens and why. Would also be good to have some actual children in there as well with the same challenges us adults face...
07-15-2012, 04:59 AM   #9
Earthsoul
 
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I have bought the book mentioned and we are both drawing, colouring, printing and sticking!!!
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