Support groups for children?

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Active member
Sep 28, 2006
Loved one DX
San Jose
Hey Everyone,

I was wondering if anyone knows of any support groups for children of PALS. We have four daughters, aged 10-19, and I know they could use someone to talk to about this. Especially other children of PALS. I know it would be a great help to them. My husband has ALS, diagnosed 10 months ago, and they have been champions at helping to care for him. He has an intercom system and a bell, and when they hear either, they run right to him. I know this is hard on them, and will definitely affect them in ways we have yet to understand, so any help anyone could give me would be wonderful! Blessings, Teej
Hi Teej. Have you contacted the local ALSA or MDA office to see if they have any groups. I haven't heard anyone talking of any here. What may be a problem is that older people with grown children are usually the ones diagnosed with ALS. I can't believe the number of under 40 people coming here with a diagnosis in the last year. I hope you can find a group. If you do find any can you let us know. AL.
I checked with our local ALS group out of UCSF in San Francisco, but they don't have any groups for kids. I guess that's probably true...people as young as my husband are not as commonly diagnosed with this. I didn't see any even close to his age at the walk we participated in a few weeks ago. My husbands name is Jay, and we won for best name for "Jaywalkers"...ha ha...for anyone who hasn't participated in the walks to benefit research, they are really a blast!

Perhaps this support group for kids issue, is a need I can address. To start a group like this, would I just ask my local ALS chapter and see if they will let me facilitate it? I hate to think of other children in the same position as mine... I even asked Carri Wedemeyer (daughter of Charlie) and she said she has never heard of one either.... I have been wanting to do something to help other families battling this...maybe this is what I am supposed to do...Thanks Al! God Bless, Teej
The hospice in our area has lots of programs for kids of all ages whose parents are very ill. They include counseling, workshops, teen retreats, programs for the children's school and church, etc. Of course few of the children attending these programs will have a parent with ALS but some of the needs would be the same and all hospices are very familiar with ALS.
this is an old thread but i figured it may help out someone. our local ALSA gave me some info from canada. she said that the ALSA out of canada has a good program for kids. it has lots of info. hope this helps. you can look it up online or have your local chapter look into it for you.
That is a really good idea! Let me know what i can do to help, I am in N.C. but i can help, just send me a message or reply....... We need to have a support group for children around here too.....
Support for kids

We found ART THERAPY classes for our young children. 6, 8, & 10. It is through a Hospice in town and I believe we discovered it from Palliative Care. My 6 & 8 year old kids love going as it is not too intense... just one on one with the therapist. My 10 year old isn't interested. But I would strongly recommend it for anyone with kids under 10.

Great suggestion, tim.. We keep forgetting that Hospice is a great resource for all sorts of things! Cindy

How did you inform your children of your wife's als and how did they respond? I think will be having to deal with this in the near future.
Talking to kids

Our approach was definitely gradual.... We called the school and did everything in our power to keep them "safe" from the truth. Then as we came to grips with Gail's diagnosis we talked about the changes that were occurring. We have never gone into the future too much because how can we explain what we don't know ourselves? We also quickly realized that kids perception of time is way different than ours. Our 6 year old told me "it has been like 40 days since I was a baby" - So giving a timeline for Mommy's life is not something we ever discuss - once again how can we explain what we really don't know ourselves?

After a few months we labeled Gails disease as ALS - just so they knew the name if someone else mentioned it. We have read the book - "Grandpa, What is ALS?" with them and the younger kids have gone to Art Therapy. We have talked about the fact that some people live long and others die early. We talked about some of the reasons why people die early. And we confirmed with them that Mommy's ALS is getting worse and that people with ALS don't get better.

I hate talking about it and always want to make the conversation disappear. But Gail makes me deal with it and deal with the conversation when it comes up. It has been 18 months since her diagnosis.... I am getting better.


Thank you. I know it is very difficult for the CALS as well as the PALS. I dread the idea of having to tell my daughter. Yet, what can we do but place our hope in God's hand?
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