What to tell young children?

[Christina39]

Dear Friends-
I was diagnosed with ALS officially this past Thursday. We have 4 young children. Our oldest is 7. Just wondering if anyone with young children can share any tips on how to minimize the impact on children. Thank you.

 

[Madison1943]

Yeah, my sadistic daughter-in-law found out I had ALS and told my 3 grandchildren as soon as they got home from school. They cried and cried. I would rather my son told them, and there was no reason for them to know at that point, anyway. Or I could have told them gently when they visited. But you can't control other people. Heck, I can't even control myself!

Carol

 

[abbas child]

Christina, I did a search (word in white on the blue bar) and this thread was going yesterday. You might want to see others. I searched "tell kids".
https://www.alsforums.com/forum/people-als-pals/14238-just-found-out-now-what.html#post153234
Love,
Ann

 

[KC2U2]

Christina, I am so sorry that you have reason to be here in the forums with us. My thoughts and prayers go out to you and your family. I'd say that you know your children best and know how to communicate with them so follow your instincts. There isn't a big hurry, give yourself time to adjust and get a handle on your own emotions, the first few weeks are so hard. Come back often, you'll get great support and help here.

 

[Judith]

Christina, I am so sorry you are facing such a dilemma. I will be praying for you.

Judy

 

[Zaphoon]

I'm very sorry to hear of your diagnosis, Christina. I'd make it very simple when it comes to telling such young children. I'd tell them that the doctors say that Mommy is sick. If the children have questions, they will ask soon enough. They may ask, "When will you get better, Mommy?" If it were me, I'd tell them that the doctors are looking for a way to make me better but haven't found it yet. Ask them to pray for you. A child's prayer can do more than words can tell.

 

[Miss]

Oh Christina, I am so sorry you are here. Zaphoon has a good idea. My heart goes out to you and your family.

 

[TedH5]

I have 3 children, ages 12, 10 and 7. My advice to you is honest but appropriate. I wrote about this recently on another thread but you rkids are not going to understand if you tell them that most ALS patients do not survice more then 5 years. That concept is something they will not be able to understand. So do not keep them in the dark but I would not get into the morality asxpects of the disease at this time. Think of it much like if they started asking you about the birds and the bees at this age, I am sure you would be honest but age appropriate. I hope this helps.

I am sorry for your diagnosis. Stay strong and keep the faith!

 

[shelleynshaggy]

My girls are 6 and 3. I try to keep it simple and honest. Daddy's muscles act funny and he forgets things is what they tell me. They will ask their questions as they come. At first we did not use the term "sick" as he has progressed we do. The kids are much more observant then I gave them credit for. My 6 yr old tells people we do the ALS walk to help daddy's doctors to find a way to make him better. They don't need to know statistics or expected life spans. Focus on making memories - that is what they need.

I also use every person my children come in contact with as my "team." Be honest with teachers, babysitters, close friends and close parents of their friends. Let them know what is going on - they will often see your child express things before you do. I often ask my 6 year old if there are any questions she has. Use any alone time to your advantage. But they will always know more then you realize.

The day Jim stopped driving my 6 yr old looks at me and says "mommy why are you always driving?"

The 1st day we visited their great-grandparents after they moved in with Jim's Aunt she asks "mommy why do grandma and grandpa live with Aunt Mary now?" Our jaws hit the ground - no one had said a word to the kids. I asked how she knew that - "I put all the clues together and they always go home long before now!"

Kids are amazing. I also have both of them visiting a psychologist as a pre-emptive strike. Not much they can do with a 3 yr old - but she learns from the actions and reactions of her older sister

 

[flower]

hello christina i am so sorry for your diagnosis everyone is giving you excellent advice my kids are grown but my grandkids are young
their decided to wait to tell them,but kids are very smart they are now 4-9. i have bulbar type als and i wish i had made more movies with them before i became unable to talk or had the breath to play with them again welcome to forum the people i have met on here are very nice and helpful

 

[kelly]

Gosh...I am so sorry to hear about your diagnosis. Our boys were 2 and 4 when my hubby was diagnosed. They are now 7 and 9....hard to believe. I guess my best advice is to keep as much normalcy as possible in a chaotic situation. Normalcy can be having them stay in school activities..have playdates.....things are just different. i tell the boys all the time...this is our "normal". My hubby is living with ALS.......and our goal is to remain hopeful. I am honest when they ask me questions..but just take things with baby steps. I have never told them that their Dad is dying....because I do not want them to be scared. They understand that there is no cure ..but that scientists are working hard all over the world searching for a cure. I focus on being happy that we are all together each and every day. It is a tough journey for sure. Stay strong....there is no rule book.
Hugs..and warm thoughts..your way

 

[Christina39]

Thank you all for responding...very helpful. I appreciate you all. Thanks again

 

[Lavender Lady]

Christina, My heart goes out to you. I have boys ages 11 and 13 at home and a 31 yr. old son and a 3 1/2 yr old grandson. When we got the final diagnosis we told the boys about the disease but not about the fatality of it. We are in family counseling and have since told them that this is fatal. They cried alot but we have moved on. It has been hard on all of us but we keep pushing forward.

Life gives us lemons and we have to make lemonaide. It is a bitter sweet.

I will pray for you that God gives you wisdom in telling your children.

Bless you,

 

[arkallen]

Hello Christina,

I am sorry to hear of your diagnosis; it's still so soon and I guess there is an awful lot going through your mind. I have six children and to very young grand children. Although my diagnosis is no longer confirmed, there was a time when it was definite and I had to tell my children. There has been such excellent advice already posted on this thread! Two things have helped us: the first is probably appropriate only to older children; but ours were quick to embrace the idea that although our time together might be shortened much more than we ever immagined, we still have time left, and we will live it well. This has helped us immensley. The second thought concerns my youngest daughter who is ten, with Down Syndrome. She can't comprehend my decline really; but she does grieve and even resent the way the disease is taking me out of her world little by little. I have made it one of my chief goals to find ways to stay with her, to stay close.

I do hope that you are gainging strength, and seeing the road ahead with some confidence.