how approach telling nine-year-old of a parent's serious disease

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perplexed

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Hi everyone.
Any advice on how to approach this with a nine-year-old daughter who is the happiest person on earth? My husband hasn't yet been diagnosed yet and I base info with children on a need-to-know basis, but I'm trying to prepare myself for our lives changing forever and for our daughter not to experience happiness again for a long time. As you all know better than I, this is very hard.
Thank you for all your help,
E.
 

brooksea

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Please! Take one day at a time.

My son will be 9 this year. In my opinion, explaining symptoms is better than telling a child someone is going to die of a particular illness or disease. That would really be an injustice.

Although my son knows that his father has ALS, he does not know every detail of what will happen as the disease progresses, and neither do we for that matter. We are thankful that my husband has passed the two year mark from diagnosed.

At first it was hard to make him understand that his Daddy could no longer do certain things, such as run or go on a long bike ride. But that's OK, we just found other things for them to do together. Also, keeping your kid busy with sports, music, or dance helps.

I try to involve my son in the "care" of my husband by explaining why it is important that my husband be helped to do certain things. I think this helps my son understand on his level about what is happening to his Daddy's body. For example, my son has reminded his Dad to use his BiPap and to drink his "smoothie." He knows the BiPap helps him to breathe and the smoothies help him gain weight.

If I see someone with a disability in a wheelchair or scooter, I take that opportunity to explain that his Daddy may need to use one too, but we don't know for sure. Our son has been to the ALS Clinic where he was perplexed as to why a man could not say Hi to him. That was the time to tell him about what ALS can do to your speech, but that there is a computer that can speak for the person.

I always try to spin a positive on any questions he may have. At first I was petrified myself about my husband having ALS and what I was going to do about our lives and our family. But I've found that all the worrying in the world doesn't change one dog-gone thing.

The ALS Association is supposed to have resources to help children understand ALS, but I've found that our local chapter is very lacking in this regard. Other ALSAs may handle it better. We were sent a book about a boy that had cancer and his dream was to see a baseball game (Lou Gehrig). That was a load of nonsense that had no relation to "daddy having ALS." There is a workbook that is supposed to be helpful, but I didn't feel it was right for our situation. If you like I will try to find the link for you if you feel a workbook would be helpful for your daughter. It used to cost $25.00.

Anyway, when the shock wears off you will not be so overwhelmed about how to tell your child. You will then be able to give out info in bits and pieces only when it is necessary.

It is a good idea to let other people in your child's life know about the parent's diagnosed so that they can be aware in case something is bothering the child.

If you have any questions about how my son is handling all this, just ask. I'm not an expert :wink:, but so far so good.

(the above is just my opinion and others may have different ideas)
 

perplexed

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You're a doll

Everything you write is so helpful and on target. Thank you so much. I will write more later.
E
 

Al

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Hi perplexed. www.als.ca is the web page for the ALS Society of Canada. They have a new section on the site for kids and young adults. Click on the childrens button on the left side of the page for als411. There is also information for adults to use as well.

AL.
 

brendapals

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Jul 6, 2008
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E,
My boys are 18,15 and 8. It was scary having to tell them I had ALS, but when I finally just "got it all out", it was so much better.
Kids are very resilient-I'm sure I misspelled that-and mine have adjusted to our "new normal".
Our 8 yr old asks me every single time I cough a little bit "are you ok"-He is just a doll.
talk to you soon,
brenda
 
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