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How do you tell children about ALS or other diseases?
Do you have young children in your life that you had to explain that your or a loved one has ALS?
How old were they and how did you explain ALS? Did they have questions? Did you use resources or a children’s book to help?
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4 Replies
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Interesting enough are adults who don’t know what it is either. My grandchildren are told I’m ‘sick’ but you can’t quite see it. I’m a year in and still walking with a cane. But yesterday I got a haircut and asked the stylist to hold the chair as I departed. I told her thanks and that I have ALS. She looked at me blankly. Had no idea. Every pusher at the airport also has never heard of it. I always reply I’m glad you are not familiar due to I thought about it all my life. My dad died of it when I was 5. So my grandchildren are kept in the dark a little (they are 10 and under) and we will answer questions as they come.
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I have a 4 almost 5 year old granddaughter and a19 month old grandson. With the 4 year old we describe my ALS as Grandma ‘s muscles are getting weaker and there are a lot of things she can’t do anymore. We emphasize that I still love her and we still find things we can do together. She remembers that I used to read to her but now I can’t. I recorded some children’s stories before my voice was gone so she can remember my voice. I use my digital voice to talk to her . We are very open about my feeding tube and she wanted to help her mom with my feeding yesterday.
The grandson and I are alike , we both drool, can’t be understood clearly and for a while we both had walkers until he learned to walk. We find nonverbal games to play like hiding a toy under a napkin. He loves to crawl up on my electric scooter and beep the horn.
We found 2 books we use: “But She Can Still Love ” by Amalia Flecksteiner and “And Love Speaks ” by J L Blair. We went to our public library, gave them a list of books and requested that they get some children’s books on ALS, and they did. There are other books ” Walk Like a Penguin ” and “When the Stars Come Out”.
We try to be open but age appropriate but not mention death just yet.
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You made me think of losing my voice its the first thing that its attacking thank you for sharing
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I’m curious as to what our members think about this recent news? Will it be of help, would you consider having your children watch an animated film as part of your discussion with them?
https://alsnewstoday.com/news/short-film-luki-lights-illuminates-als-diagnosis-young-people/
alsnewstoday.com
Short film 'LUKi & The Lights' illuminates ALS diagnosis for young...
The animated film, which debuts March 22 at Cinema Village, New York, aims to help children cope with the complexities of the disease.
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