resources for telling young children about diagnosis

[ralsip]

Was just curious if anyone had any resources or tips on how to handle telling small kids. Was diagnosed a little over two weeks ago and got confirmation this week. Have two boys, 12 and 7. Part of me wants to tell them about this as it will mean lots of changes (selling our house which is not handicap accessible in any way) etc. I also spend a lot of my time imagining these conversations and I really want to get them behind me and move on with our lives as best we can but maybe I'm being selfish. Would appreciate any suggestions.

 

[ottawa girl]

Welcome and so so sorry about your diagnosis.

In addition to ALS society publications, please check out " hope loves company" web site. Specifically designed for children of PALS. Their book ' the stars that shine' is written for children and explains the disease. I believe it's available on ama zon as well.

You will also get reliable information here. It's OK to be selfish - but you sound the opposite of that!

 

[affected]

That site is just beautiful, thanks for sharing that Elaine!

ralsip I'm so sorry to hear of your diagnosis, but so glad you have joined up here with us, the place no one wants to be, but the place that is so often our lifeline.

I can't advise on telling young children, ours are all grown, though we are a new relationship and marriage and both have grown children. His children already lost their mother, so it's tough on all the family.

What I would say is that asking here is wise - think this through while you are still in the awful first month or 2 of shock and gather good information. That way you will feel some control over at least this. I know it was very hard for my husband to tell his children, even though we all knew in the last few months before diagnosis that this was something serious, just by the symptoms and progression.

Do your children know much about you being unwell already?

Sometimes it helps too if there is another family member the children look up to that can follow it up with them, so they have someone else to ask questions of or say their feelings. It would be normal that they may not want to show you all their feelings.

 

[ralsip]

Thanks so much for the information. My oldest has stared seeing a psychologist for anxiety issues before this so we spent some time with him discussing how to talk to them. So far they just know some weakness in hands but only because we've mentioned it.

 

[Barbie]

if your symptoms are very mild and not really noticeable to them, It would not be so bad to wait for a while to talk with them. BUT, if you become noticeably weak and fall or your speech is failing, you will need to tell them dad is not well.

we didn't tell our kids at first--they didn't realize any thing was wrong for a while. the first year after his diagnosis he progressed at a fast pace, and we didn't really tell the kids anything more than he was sick. was not the best idea--they did not say anything at the time, but it was scary for them they told me later, when they didn't understand what was going on. It is important to be honest, but you don't need to tell them more than they need to know at the time. 7 is very young, but the 12 yo is right on that cusp and you will probably need to be more forthcoming with him/her. any thing you tell him he can look on the internet for more info and scare himself to death.

I think telling your kids is the hardest thing...

PS be careful about what you said in front of them, and papers you leave laying around and websites you leave open on you computer. if they (especially the 12 yo) is worried and starts to snoop, you don't what them to find out like that.

 

[AfraidButNotAlone]

Canadian ALS society has some good resources

 

[Tx Daddy's Girl]

Are you a vet? I know they will make your house accessible up to $65k.

My daughter is 7 and seeing her Papa deteriorate is horrible on her. She is a worrier anyway but we are Christians and she knows that people go to Heaven. She had a dog die a few years back and we told her only God could make her dog better so she says only God can make her Papa better. In your situation, I'd say sooner rather than later. You will need to make adaptations. Include them in the process, let them help you. Maybe see a therapist. Our therapist told us to only answer her questions, but not go further. If she asked "is Papa sick" we'd answer "yes" and not anything else unless she asked. Let them lead you. Also, don't give too much information. Just say Moms not feeling well and might not act like herself, or mom might drop some things. Use your gut, you will know what to say when, I promise, it's crazy because I struggled with this and I let God lead me and He did.

 

[ralsip]

Thanks again for the information. We told the oldest but wouldn't tell him the name to keep him from reading on internet. Going to see a psychologist he had been seeing for other things as he said he had other questions. Took it pretty but seems better after a coule do days.

I am not a vet but I'm glad to hear they have those benefits.

 

[AfraidButNotAlone]

Our kids all know something is going on. We haven't named it either, but are preparing them. They help out with lots of stuff now!

 

[pearshoot]

my children are grown....my opinion only...once told get them involved in doing simple things to help in care, with praise in doing so...not items they must do all the time....PALS in our support group has grandson, 11, that willingly does his ROM everyday....Maybe being included in the care team as it advances would be important to them but please don't force it.