Talking to the kids

[mommy2boysNC]

Advice please on now to discuss ALS with my 7 year old? He's having a tough time. Sometimes he is open to talking about it for 2 minutes and sometimes he is like a locked door. Certainly back off, not wanting to push him.

How'd you guys do it? It's his grandfather who has ALS.

 

[ottawa girl]

Check out the web www. Hopelovescompany . Com

AMazing work being done to help children affected by ALS

 

[vickim]

Kids are resilient, they understand more than you think. They can pickup on your emotions, so when having a honest discussion about your dad, show strength and love.

When my dad had his voicebox removed due to agent orange I simply told them what was going to happen and that grandpa would talk with a cervox and sound like a robot. They excepted it very well.

That was 20 years ago, now I have had to explain my mom having open heart surgery and even though they are older they still look to me and I remained calm and reassuring when I told them.

The calmer you are the better they will take it. You can explain things alittle at a time, but do it honestly. Don't sugar coat it, don't scare them and don't tell them graphic details. Kiss (keep it simple). Have them ask grandpa questions if they need to and if he is reassuring and calm all the better.

I wish you peace.

 

[mommy2boysNC]

It breaks my heart to see how its effecting him, because he definately understands a lot, enough to confuse and scare him. The emotional maturity isn't there yet though. My 5 year old is very resilient.

Thanks for that link!

 

[mommy2boysNC]

Knowing the progression is worsening, I was trying to come up with a game plan on how to prepare them for the changes and the inevitable. When my mom died, he would even look at her picture for a few months.

 

[marypat]

i'll try and attach a pdf file. if it doesnt go thru pm me and ill send it to you that way. its a very good basic book and you can order it as well.

 

[skipper66]

Thank you Marypat,
I looked it up on the internet and will be printing it off. Very nice activity book for kids. My kids have had trouble dealing with their grandpa (my dad) having ALS. They have all responded in different ways. One became quiet and withdrawn and grades started to go down in school. Youngest cried alot and would pull his hair out. The hair pulling stopped after we started explaining things as best we could to him. He's 9. Our daughter 15 started having anger outbursts.
My kids were used to seeing their grandpa almost everyday. He even used to before he started having falls and symptoms even drove them to school. Then he got sick and moved to Dallas for several months. Their hearts just broke. He is now back for at least the time being at his own home. The kids spend as much of their free time as possible with him. They like to small tasks when they can to help him.

 

[rosec]

I think kids are capable of understanding when we talk to them in a way they understand.
My husband was diagnosed three years ago. Since that time, whenever friends or family come to visit, many of them bring their children along. So we have had kids from about 4 years old to teenagers visit us. (Our own kids are in their early twenties now.) When they come they sit and listen or talk to our children. The little ones sometimes get really curious, and when he was still able to talk, my husband will answer their questions honestly in an age appropriate manner. About an year ago the 11 year-old daughter of a friend interviewed my husband for a school project.

 

[Barbie]

Every kid will respond differently. I have 4 and all reacted differently to their dad's illness. At 7, he is aware but probably still believes he can wish it away or pretend it doesnt exist. I think the best that you can do is be open and honest with him but keep the discussion on his level and at his speed. don't try to force the issue. let him have as much normal as possible--fun and laughing and playing. I would not discuss that grandpa is going to die unless he asks directly. I would say granpa is not going to get better but he is still grandpa and still loves you. grandpa could help by spending time with your son and and maybe try to show him he is still the same guy. let you son practice reading to him, or ride on the wheelchair with him or race him in the wheelchair! it may seem silly, but try to remember that it is part of their family story now and it can make them more compassionate and loving and stronger adults if they are able to interact with their Gpa and deal with the changes.