Strange Situation

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New member
Apr 1, 2007
My ex-husband just got diagnosed with ALS, and I just found out this last week. We have a 10 year old son that lives primarily with me but sees his dad very often. I have a couple of concerns: 1) how do you tell a 10 year old that their parent has ALS? How much info is too much without lying? 2) being that I'm the ex-wife (he is remarried), I'm concerned about prying too much, but on the other hand, I feel like I need to be kept in the loop since this concerns my son.

I guess, I just feel like I'm in a very strange position. Does anyone have any general advice for me? It's such a recent thing and I haven't really had a chance to process it like I should.

Any advice would be truly appreciated!

I really think you need to tell your son about his dad. It might be best if all of you can be together when this happens so everyone knows what was said and all questions can be answered. It is better to tell him the truth now, it will be harder later.

Talk to your EX and set a plan, I personally think the sooner you do this the better.

Good luck and God bless!
I think your husband should tell him Kids are stronger than you think and the less you tell him the more productive it will be I wouldnt go into alot of detail and as the disease proggresses than talk some more But that an opinion i hope it helps Pat
Talking to kids

We initally told our kids (14 & 12) about their Dad's condition in very general terms. He was already walking with a drastic limp when he was diagnosed, so they knew something was wrong. So we explained how the brain was sending messages to Dad's nerves, but the disease was intercepting the message so it didn't reach his muscles. Then we sort of left it at "One day Daddy will probably be in a wheelchair, but we're going to do everything we can to keep him as healthy as we can." After that initial discussion, we have tackled issues as they came up....the walker, the wheelchair, Me having to feed him, the feeding tube, etc...just an honest explanation each time something new faces us. I'm sure their little minds are racing, but usually they are content with the information given. I pray that they come out of this OK!

So I guess our outlook has been to provide information as it was needed as opposed to revealing the dreadfulness of this disease from the outset.

I think you've gotten very good advice so far but I want to alert you that most 10-year-olds have access to the internet and google. If you give him the name of the disease (and you should, IMO) he's going to be able to do his own research to find out the dire prognosis. If you think an internet search is a possibility make sure you tell him the basics of what he'll find out before he discovers it alone in front of a computer screen.

Thanks so much for that reminder. I've got a pretty good handle on him with regard to computer usage. I will just tell him that if he does want to research it, we need to do that together.

Everyone has had such wonderful advice. I truly appreciate it.

God bless all of you and the situations each of you are in.
Just my opinion so take it with a grain of salt:

ALS is a very different kind of illness - with devestating effects and prognosis. There isn't a pretty side to it at all and I think sugar coating it will only cause bitter feelings- even in a young child- in the end. Try to be as honest as you possibly can with your son.

I wholeheartly encourage you to learn as much as you can about the illness, then set up a time to meet privately with your ex-husband and his wife and talk about : 1. what you can do to help them both 2. what he envisions that this diagnosis will mean for his son and 3. how he feels that your son should be told. This meeting is to gather information and to come to an agreement on how to approach this life problem.

Then a second meeting should be set up either with just you and your ex or with you and your ex and his wife (however they feel most comfortable) to tell your son together. The emphasis on that meeting should be strictly you son and his needs for reassurance that he will always be cared for and that he is loved.

Hope this is helpful, and not too pushy.
Hi there,

I have two boys ages 12 and 15, a little older than your son. I have had them along with me through my mum's entire ordeal with ALS. I know that this is different from your situation. It can be very difficult at times, but, I have found that being honest about this disease and helping them to understand it has eased things. I am careful to point out the changes that are symptoms of this disease and not something that they are doing (my mum has extreme laughter and crying) and I let them know the answers to their questions with the truth only. I did not give them hope for some type of miracle cure. I know this sounds brutal.. but, kids really can cope with more than we give them credit for and I felt if I led them down the "hope" path that they would end up angry and hurt. I would say that our best coping skill thus far.. is to help them keep up with the "normal" things in everyday life. It's been difficult for me to find that balance but I can see how very important it is for their everyday life. ALS is our reality but so is skateboarding and school and working and car pooling and sleepovers etc... I have noticed that they are much more willing to spend quality time with their grandmother because they have a life outside of ALS. My boys have sadness and anger and they are often confused by this experience.. but that's all a part of it and I don't deny them their feelings. However you choose to deal with this.. I am sure that you will find what works best for your son and his father. We are all so very different. I also found that the article "All for Kids" from the ALS Canada website was extremely insightful and instructive.

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