talking to my kids

[Kristina1]

We have held off on saying anything to my kids after my initial provisional diagnosis. My diagnosis was confirmed today. We want to at least initiate a conversation with our older two, who are ages 6 and 8. We don't want to scare them but they have noticed some of the little changes and accommodations I am using.

Any advice or resources on how to talk to young kids about this? I tried the link in the sticky and it is no longer a working link.

Our initial thought was to simply tell them as things go along, rather than telling them what WILL happen in the future. We also were not planning on telling them that this is a fatal disease because I feel like that could be really traumatic for them to hear and if I am lucky enough to progress slowly it's something we could discuss as they get older and more mature.

Advice? Resources?

 

[Nikki J]

Sorry about the broken link. Some people have found this site helpful. https://www.als.ca/about-als/resources/for-youth/

 

[Atsugi]

Kristina, I'm sure you are absolutely right. Tell them only what they can process now.

We told our kids, 13 and 15 that mom's foot was sick.
Later, we told them mom's leg was sick.
All along, we involved them. They crushed meds, used the Hoyer Lift, operated the breathing machines.

Of course, for your younger kids, maybe try to ask them to help mom, help dad to help mom--we need you to clean up dishes so mom can rest...

 

[KW1234]

I have been reading a book, Rowing without Oars, which is about a young mother with ALS. She talks alot about how her kids process her disease as it progresses. I had to put it down for a few days here and there as it is hard to read through tears. You might find it helpful. My kids are older and live all over the world. I sent them an email explaining what I had and several links. I also told them how they could best support me and they have been awesome.

 

[Firefighter58]

Hi Kristina,
I agree with Mike, why over burden them now? Gradually tell them what you are comfortable with and being kids they will soon pick up what they want to know on their own.
Al

 

[gooseberry]

Counseling can also help as things progress

 

[Trixie80]

I read a blog
Speed for sarah
Written by a young mom with ALS

 

[Jennanne]

Hi Kristina,

Our girls are 14 and 11 and my husband was just diagnosed in December. We told them Jon's diagnosis in January.... Jon is bulbar so he initially presented with speech issues, quickly followed by difficulty walking. By the time we told them they knew "something" wasn't right. They wanted to know right away if he was going to get better and if he was going to get worse. After we answered them honestly they wanted to know when he would get worse. This part, the unknown was easier and where we are living right now.

We told them it's day to day and the best thing we can do now is to have them stay involved in activities (they are both competitive swimmers) and help Dad when he needs it. They have been amazing,.... when he was having trouble pulling his legs up to tie his shoes I would stare at him doumbfounded and our 11 year old was the one who pulled the chair over to rest his knee on. Kids are amazing and resilient, our motto has been to keep their lives as normal as possible and to just keep it on a day to day basis. Hugs to you and your family!

Sincerely,
Jenn

 

[Firefighter58]

We told our grand kids very little, but being fifteen and sixteen in high school they soon knew more about the disease then I do.
Al

 

[diagnosed2016]

Our kids are small- 3 & 4, all we've told them is that Daddy has a sore leg. They are too small to understand any big picture things or to even process what it means to die, so I will adjust what I tell them as things progress further. I plan to consult a therapist to help prepare them and make sure they have proper support to understand what's going on. I also don't want to burden them before necessary