Are there any online groups for teenagers who have a parent with ALS?

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I had a dream that my ALS was just a bad dream! Come on Neil, please wake up!
 
J, I had the same question about dealing with teenagers. Mine are 15 & 14. My hubby is in early stages right now so even though my kids know the story it hasn't hit home yet as they don't see a change. Other than he fumbles with his hands and gets tired easily. I've been looking for something that they can relate to as well.

I do believe they will need a something that caters to there age. As we all know and have been through, it's a hard transition let alone having to deal with this shitty disease. I'll keep searching and asking my chapter as well as friends. Private FB for KALS to join or a KALS forum where they can talk there own language.
Blessings Alana
 
Thank you for the responses. I will try Kids Konnected, also -- as a hospice nurse, I thought to myself before I even entered my Google search, "They're probably going to be mainly for cancer." But maybe even some of the cancer groups are open to kids of parents with other life-altering illnesses. Won't hurt to try...

I also found "griefnet.org" which has support groups for kids and teens "facing any major loss." I e-mailed the founder of the group to find out if the groups focus on kids/teens who have experienced the death of a loved one, or whether it has a broader focus on grief in general and coping with change and loss. She said it's open to kids facing any kind of loss, and that the kids tend not to post a lot but are kind and supportive when others do. I have a feeling that most of the kids have probably lost a parent or loved one, but have not yet actually taken the step of joining so that I can check it out further. An option, anyway.
 
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