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Telling the Kids

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mrsmason

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Dec 26, 2011
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CALS
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Any advice on telling my kids about their dad's illness would be greatly appreciated. My husband was diagnosed with bulbar ALS in May 2011 and we have two daughters, ages 3 and 5. The girls know that their dad is "sick" but that is all we have told them.
 

Al

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Look at the bottom of this page. There are related topics. You can also use the search feature up above.

AL.
 

HelenL

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You guys are up late...

Don't tell the kids anything more than they need to know right now, and age appropriate to them. It took me a while to tell my kids and they were 11, 13 and 16 at the time. My daughter (oldest) knew before her younger brothers did, I was honest with them... to a point. I told my boys that my legs weren't going to get better, that it was neurological, etc. But I didn't say ALS to them until about a year later. I didn't want them finding out from others, but I didn't want them to go online either.

Kids aren't stupid, they know something is wrong, but do not need full details until absolutely necessary. Include them in helping out when appropriate, and use your video camera! Bank his voice if you still can, have him type letters to them for future events in their lives if you want to (I still haven't)... and live for today!
 

heymom05

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Only answer the immediate question. You are doing great. Just one day at a time
 

Felica

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My grandchildren are 9 and 4 they know memaw is sick. They have heard ALS. We answer questions as they come. They love to help take care of memaw I found out this weekend Dalton who in nine looked it up on the Internet. All he said to me was. We will keep praying and fighting memaw. I love you. They both will just walk up and put there little arms around me and hug tight that is the best therapy I get. Let them help with daddy. Make memories now that will last a lifetime. And take lots of pictures.
Hugging you
Felica
 

Katie C

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Your kids are very little.. I think just a little at a time is good... take things as they come up. They know daddy is sick. That's important because Daddy will have good and bad days. They aren't going to understand much beyond that anyway. Putting the name ALS on it is probably even fine because they're not really going to know what that is but they'll feel like they "know." I'd say just try to keep their lives as normal possible for a long as possible.
 

Barbie

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I think you are right at that age to tell them just that daddy is sick but it wouldbe good to tell them the name so as they get older they understand more and can put a name to what was happening. Ejoy every day with him and with them, and take lots of pictures. Things will not get better than today. if they ask questions, just be honest but age appropriate--save the bad stuff for other adults.

Hang in there--your plate is full and your heart is heavy now. stay strong.
 

Jason's Dream

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I wrote this in another thread. Hope this helps:

I'm not sure how much help this will be, since my son is only 3.

We never hid our emotions from him. I read somewhere that in showing our emotions, it showed him, its okay to be sad, and its okay to cry.

We told him that Dadda was very sick. Beyond that we didn't go into much detail for his young age, but he knew something was up. He missed and couldn't understand why Dadda couldn't hold his train or play trains with him anymore, and we always had to remind him to be gentle with Dadda, as Dadda has a big booboo and so Dadda hurts.

The morning that Jason passed (he passed that evening). It was apparent that he was really close to death, and so I sat him down in a chair, and began to speak with him. I told him that "You know that Dadda is really sick. Well, you know how you listen with Angie's (the nurse) stethascope to Dadda's heart? Well, sometime soon, Dadda will stop breathing, Dadda's heart will stop beating, and Dadda will die. Dadda will then go to live in Heaven with God (yes, I told him what Jason wanted him to hear). Its okay to be sad, its okay to cry, and its okay to ask questions." This was alot for him to process and he merely answered "I wanna go see Grandma now."

Right after he passed, William (our son) came into the room, and again I sat down to talk with him. "You remember me telling you about sometime soon, Dadda would stop breathing, his heart would stop beating and he would die and go to be in Heaven with God?" He nodded yes. "Well, Dadda died sweetheart, and Dadda is now in Heaven with God." (william)" In Heaven with God?" (me) "Yes sweetheart". (william) "Oh." So for a few minutes afterwards, he told people that Dadda was very sick but that he was with God. So we corrected him, "No, Dadda is not sick hon, Dadda died." So then we had him in the other room, while the funeral people took Jason out of the house, and afterwards, William went back there then came back in the other room, a bit strongly "Where's Dadda? I want my Dadda? I want my Dadda back!" I had him come sit with me and explained to him. "You remember that Dadda died? Well, when someone dies, two people from a funeral home come and take Dadda, to the funeral home and clean him up and put him in a big bed (since he had never seen, nor ever heard the word "Casket", I used big bed, then later explained that word when we were at the funeral home) for our friends and family to come and say Goodbye to Dadda and that they love us and are here for us. Its okay to be sad and its okay to cry." At this he did shed a few tears on my shoulder and rubbed his eyes, then he got down.

The next day my father flew in from out of town, was sitting in a chair, and William came up to him, put his hand on his shoulder and said "My Dadda's Dead". I took William to the Doc's office, on the way from the Doc's office to the pharmacy, while we were driving, William said "Where's my Dadda?" (me) "Remember, Dadda died, and now is in Heaven with God." (William) "But I just want my Dadda back! I just want my Dadda back!" (me) "I know sweetheart. I do too. That is why we are sad, because we miss Dadda, and its okay to be sad."

Then the following week, his SS teacher told me that William told her "My Dadda's in Heaven."

The day before the viewing, I took Wlliam to the funeral home (without the casket, flowers, or the people) and explained what would happen the next day. Then the day of the viewing, I explained what was in the next room (remembering our talk from the day before), and then took him in there to see his Dadda. We had his trains and stuffed animals, and toys in the nursery (off of the room where Jason was laying in his caket) as well as videos with a small tv. I let him know that I would be here beside Dadda, so if he wanted to see me or Dadda he could be in here, or if he wanted to play with his toys, that Grandma (my mom) would be in there with Katie (our daughter), and then let him come and go as he pleased. I wanted him to do what was comfortable to him, and had talked this over with the funeral home prior to this day concerning all this.

The day of the funeral, I explained what would go on, the fact that Grandma and Grandpa would be sitting up front with me, and again, he could come and go as he pleased, my friends would watch the back of the room and be there for him and take care of Katie, and if he wanted to be up with us, he could. I didn't want to push something he might not be ready for, at his young age. At one point during the service, he came up, and checked to make sure we were all sitting there, then went back to play. It was comforting to see we were still there, like a security blanket. When it was just Wlliam, Katie, and I in the funeral home with Jason (right before they closed the casket lid, and wheeled him out to the pall bearers), William got up on a chair, put his head on Dadda, then asked to help close the lid. When they started to wheel the casket out, true to form, William ran up and grabbed a handle and helped "carry" Dadda out. It was like he was helping Dadda one last time, like he had done daily while Dadda was alive (Each morning that the nurse aid would come to give Jason his bath, he would come in and ask to help, and would be given a wrung out wash cloth that he would help "wash" Dadda's feet.).

He refers now to Dadda having a new body in Heaven, that Dadda's body is at the "tent" (cemetary where I have told him that was where Dadda's body was going to be put into the ground).

His appetite has dwindled, but it has picked up some.

Tonight, at the dinner table, he said "I miss Dadda". I told him I missed Dadda too, and he said "but its okay to be sad." Yes, Sweetheart, its okay to be sad. We have then referred to things Jason liked, foodwise, etc.. and that, this is how we are keeping him alive in our hearts, by our memories.

I am soo glad to hear him talking about his Dadda, and letting it out. I know it will take time, and we will continue to always talk about what hurts the most for me, but I know I need to, for his sake.

Not sure this helped, but I hope so.
 

HelenL

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You are certainly wise beyond your years, your kids are lucky to have you and have had your Jason for their Dad. Beautifully done...
 

joni51

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Sep 8, 2010
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Becca, like I said ..you are going to be just fine:)
 

VoiceforLinda

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AZ
Becca,
Your children are blessed to have you as their mom.
Linda
 
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vzandt

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You are a very smart lady:)
 

Atsugi

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PRESCHOOLERS can get through anything if they are loved.

In my limited experience, it seems to me that PRESCHOOLERS have only one main function in life: to enjoy a good life of fun, learning, exploring and growing.

For a Young Child in an ALS family (YALS), I see three stages of growth:
1. Living Life in Your ALS Family: Enjoying and exploring life, learning, and growing while one parent is getting sicker.
2. The Passing: Coping and communicating during and immediately after a parent’s passing.
3. Living Life in Your New Family: Adapting to enjoy life as a child of a newly adjusted, hopefully stronger, family.

The normal day to day life of ANY young child is all about adjusting, adapting, learning to navigate through life. Everything is new all the time. They haven’t yet settled on a concept of a “normal” life yet.

So the first stage is very different for a YALS versus a CALS. While we CALS must “adjust” to the life, the Young Child--having no point of reference and having never developed any concept of what is a “normal” life--will not need to adjust, per se, but will instead, learn to live life, just like any other child would. Young Children don’t really need to “adjust” to ALS like we adults do.

So I think the answer to helping our youngest children through ALS is much like helping them through sex or driving a car or going off to war: you Don’t, really. They are not involved in sex or cars or war, and aren’t really “adjusting” to ALS, either.

In that sense, during this particular stage of the disease, it’s not really a difficult adjustment for the kids.
A. They’ll follow your lead, as always.
B. They’ll be affected by your emotions, of course. (Think about that.)
C. They’ll try to emulate you, which is what they do, anyway. That’s no different than any other kid, with or without a terminally ill parent.

As much as this is a really big deal for us adults, a preschooler doesn't really have any special problem adjusting to this stage of life.

Of course, later, during the Passing event, there will need to be a special emphasis on communicating and coping, but at this stage. You don’t need to do anything special with your kids—just guide them through day-to-day life like you would normally, answering their questions—as you normally would—with only as much information as needed to satisfy that moment’s curiosity.

As always, just be there for them. Hug them lots, as always. Pay attention to their questions, play with them in their silly games, and praise their naive observations lavishly, as you always would.

Anyway, that's my instant, gut response to your question. Take it if it feels right to you.
 

Miss

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Apr 11, 2010
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Folks, Mrs. Mason is gone. She never checked back in after those first few posts.
 

Atsugi

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But TELLING THE KIDS is a timeless thread.
 
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