how to tell children

amanda in CA · Post by **amanda in CA** » Thu Jan 13, 2005 4:15 am

Hi, Blake will soon be 4 years old and he is at the 'why' stage with everything. Recently he saw a dead squirrel at the roadside and asked what had happened to it. I saw this as a good time to introduce the concept of death albeit in a very vague sense drawing an analogy with machines and how they can get broken or worn out and no longer work. He sees me doing dialysis with the cycler and I have explained this by telling him that mummy 'can't make wee-wee properly so the dialysis does it for me'. Now he has started asking why I can't make wee-wee, and I am not too sure how to progress with explaining it to him. I obviously don't want to go into too much depth at this stage, or frighten him in any way, but I also don't want everything to come out in one brutal way when he is older. I would prefer him to gather the facts gradually so it doesn't one day come as one huge shock. I would be grateful for the advice of anyone else who has been through this and how you dealt with it with your children. thanks in advance your your help, Amanda

George · Post by **George** » Thu Jan 13, 2005 8:32 am

Hi Amanda, I was lucky in the fact that my children were all grown up when my kidneys decided to go to sleep. But I am sure the 'common sense approach' that you have already shown to have will see you and your son through. Just be open and answer as truely as posible. Hiding the truth will not really protect them, it will make it harder for them as their expectancies will be higher than they should be. Children are much more resilliant to lifes problems than we give them credit for.

debbie · Post by **debbie** » Thu Jan 13, 2005 3:05 pm

Hi,
I can remember having this with my daughter... I explained pretty much the same way as you but described the machine as a special blood washing machine. I also worked in school with 5-7 yr olds who would ask what my fistula is, I thought I'd explained it well until a friend said her son thought I peed out of my arm

Mike · Post by **Mike** » Thu Jan 13, 2005 3:55 pm

I have a hard enough time trying to explain what renal failure means to adults let alone children

Bruce · Post by **Bruce** » Thu Jan 13, 2005 4:21 pm

I've always believed in being honest with children, but at the same time trying not to confuse them. Often they just want a simple one-sentence statement to answer the specific question in their brain--which may not be the same question as what they have asked. Children often need just a little information to satisfy them, and you have to be able to "read" your own kids to know how much and what to tell them. Best of luck. --Bruce

gary in bc · Post by **gary in bc** » Thu Jan 13, 2005 5:39 pm

Hi
Kids are funny in that they all interpert things differently. I thought my 4 year old nephew had a resonable grasp of peritoneal after watching me do exchanges until we were in the checkout line at the supermaket where he promptly told everyone around him I had two penises and asked me to show everyone.

gary

wing · Post by **wing** » Thu Jan 13, 2005 5:50 pm

My sister explained it to her kids in a similar way to how you are progressing.
She told them that she couldn't make wee properly so she needed the machine to help her with that.
Then when the "Why's?" came along, she just explained that her kidneys didn't work properly and that in most people, it's the kidneys that make wee.
Simple, straighforward answers seemed to satisfy them - for a time! - then more questions would come up. Bit by bit, as they got older, the explanations became more explicit until they had no more questions and a fairly comprehensive knowledge of the anatomy and physiology of the renal system!! (It took many years to get to that stage I have to say).
As others have said, children are very accepting of situations that would concern adults. The more laid back and matter of fact you are about your situation (even if you don't feel like that really!), the more matter of fact and unstressed your child will be.
You never know, you may stir up an early interest in things scientific!

bluemoon · Post by **bluemoon** » Sat Jan 15, 2005 10:09 am

I found this web site excellent help:
www.winstonswish.org.uk

Its sort of aimed at people who have died (dont let that put you off!!!) it really did help us when telling the kids.

Lorna · Post by **Lorna** » Sat Jan 15, 2005 10:38 am

Hi Amanda
I started dialysis (apd/ccpd) just a few months before my daughter turned 3, and we explained to her as much as we thought she would understand at that age. Basically, she knew mummy was ill, and I was getting special medicine from the machine, through the tube in my tummy, to make me feel better. She loved help set up the machine, and seemed quite happy with the explanation at the time. I was transplanted only a few months later, and again we explained what was going on, in terms we thought a 3 year old would understand. I personally think you have to tell kids as much as you think they will take in, and in language they understand, it's the unknown that frightens them. I think we've done a pretty good job with our now 6 year old daughter - at christmas time, she asked if she could have a donor card to help sick people get better if she died!!
Best wishes,
Lorna
xxx

JMan · Post by **JMan** » Sun Jan 16, 2005 6:57 pm

Mike you are sooo right! LOL

Have to say my nephew (now a teenager but 6ish at the time) handled me being on haemodialysis with reasonable aplomb (I know.. strange words so early in the evening

). Better in fact than his dad who turns grey at the sight of blood.

Lots of Q's of how the machine worked & 'what does this button do?' etc.. but other than that no problems:)

Rachel in NY · Post by **Rachel in NY** » Tue Jan 18, 2005 2:35 pm

Children at a young age are very adaptable. They are missing the 'gross factor' that comes with older children. At some point when my bedroom looked like a nursing home or a hospital (take your pick) my neice loved it. She loved my room with the 'lots of fun toys'. Toys? no. But boxes of bandages and packets of guazes? yes. She'd stack boxes, make towers, and do all sorts of things with my medical supplies. She enjoyed my room the most - and thought it was the coolest thing. And the icing on the cake was when I'd give her stuff for her dolls or stuffed animals. She was abt 3 at the time, and it was the coolest thing to hear her say "can u check the bood shugah (sugar) of my beaw (bear)." Another postiive aspect out of this was that she never feared 'shots' at the dr.'s office. She knew they pinched, but somehow suffered in silence and understood that I do 'em all the time, she sees me doing them, so its not a scary/fearful thing.

Young children don't get shocked. hehehe - not to long ago my neice (now 5.5) didnt' want to eat her dinner, and her mom got a bit frustrated, and it ended with my neice saying "i don't want to eat. i want a long string in my tummy like Rachel" (feeding tube). My sister was the one who was shocked then. My neice accepted it as something normal.

So what I'm aiming at - is that kids see/know as much as they want to, and interpret it as they wish. As they get a little older, they may want to know less. But give them as much info as they want. Don't hide information thinking 'they're too young to know', bc that can backfire amazingly.

I had an aunt who was extremely ill, and when I asked what was going on with her, nobody told me she had cancer and was going to die any day. I was told she had a 'stomach problem' or something. I don't even remember. Point is, I used to hover around the house tryping to pick up bits and peices of conversation, and I kept 'hearing things', and hearing was even worse then not knowing. So I wasn't protected by not knowing. It made it worse. I shoule have been told exactly what was going on, bc I've ASKED.

And that's really the only bit of advice I can give. If they ask, give. A little at first, but if they want more, give them more. Being vague is a parents/older persons love of life, but it is NOT how children want to hear things

Rachel

Elaine · Post by **Elaine** » Wed Jan 19, 2005 9:02 am

Hiya right from when Rachael was diagnosed aged 2 1/2 we as parents and family have always been open & honest with Rachael about her kideny disease problems etc. For us it seems to have 'worked' for the better. We have always explained what is happening to Rachael with hospital admissions operations treatments visits etc.

Sometimes it can seem soo upsetting as parents to have to explain really sad things and outcomes etc for the future. But im sure it has gained lots of trust for all of us especially Rachael and a 'closeness' that she feels able to ask what maybe troubling her or what is gonna happen etc. The outcome is a very mature young lady who is developing in confidence to help make her own choices with our help advice information and above all suppport and love.

Rachaels sisters even helped us with her dialysis @ home and felt part-of a team to assist Rachaels medical treatments. Yeh as Rachel and others' have said kids are soo resiliant and I personally feel it is betetr to be as open & honest as is possible. Depending on their ages how to explian information both good and bad experiences.

I was worried when they came to see Rachael on haemodialyis in hospital
feeling protective etc however to be able to see their sister improving from her peritonitis and getting 'bak to her usual self' was soo rewarding.
If u saw the pictures of all of us on boxing day dressed up colourful wigs n hats n flashing lights etc u would see that we are making the best outta such difficuilt circumstances.

Rachael was even awarded a beautiful glass teardrop to honour her courage through adversity and illness 18mnths ago @ school donated by a family who sadly lost their daughter to cancer and wanted other children to benefit from their grief through recongnition of their illnessa nd bravery too.That was a specioal day seeing Rachael being presented with the glass teardop @ school assembley with all kids applauding & cherring her despite only able to attend school 10hrs in whole school year then.At first Rachael was reluctant to attend, but the experience was truley amazing and the atmosphere the school kids gave cherring and clapping out in the ceremony was truley memorable. Although many did not fully understand the extent of Rachaels experiences of illness the love & support shone through all the kids that day.

We will never forget that experience

........

just some of our own experiences how resiliant kids are

best wishes Elaine XXXXXX

Kidney Patient Guide