Just throwing this out there..............I called ALS Clinic and asked if there were any kind of support group for kids. She said no. She said they were more than welcome to attend the adult support groups.............I dont think so ! Do you think if we started a forum for kids/siblings of ALSers we would get any involvement. Please let me know your thoughts. There is just not anywhere my kids can go except a private therapist......the Forum would perhaps be like ours................a place to vent and get those feelings out..........................Cate
- Status
indigosd
Very helpful member
- Joined
- Jun 22, 2009
- Messages
- 1,805
- Reason
- Lost a loved one
- Diagnosis
- 07/2009
- Country
- oz
- State
- oz
- City
- RURAL
Cate, how old are your children? Our son is 13 1/2 and we have the same issue. I guess I would NOT want him to be on this forum. Too much information and then I would lose my lifeline as I would have to go back into my Matthew's Momma role if you know what I mean! [He doesn't know about the MONKEY'S!] What would you think if I asked Kinga, Michele and Jodi if they would start a facebook cause for our kids to meet online? They could monitor it so it would be factual and safe. Our children are also falling through the cracks...
Thank you for posting this! hugs, Kay Marie
Thank you for posting this! hugs, Kay Marie
I am so glad you liked the idea...................my chilldren are 14 and 11 . At least we have resources with our "peers". They have nothing ! Please ask Kinga and I was going to ask , I believe , David?, from this site if we can format the same way. I would not mind making sure it was kid friendly at all times and just for kids at all times. I would love to give these kids a place to connect . Keep sending your thoughts ! Cate If Kinga wants to email me that is not a problem at all..............
indigosd
Very helpful member
- Joined
- Jun 22, 2009
- Messages
- 1,805
- Reason
- Lost a loved one
- Diagnosis
- 07/2009
- Country
- oz
- State
- oz
- City
- RURAL
I truly would not want them to have access to our forum...we would have to be so careful and censure our thoughts and feelings. I am emailing Kinga and asking her if she would or could take this on! We will find someone that will. OUR KIDS need to have other kids that are on the same journey to talk to! hugs and hold on, we will find a way! hugs
ValRunk
Active member
- Joined
- Mar 27, 2010
- Messages
- 47
- Reason
- DX UMND/PLS
- Diagnosis
- 09/2009
- Country
- US
- State
- NE
- City
- Scottsbluff
I think that's a GREAT idea! Do you think we could do something, also, for PLS? My daughter is 11, and I was just thinking about how much to tell her now . . . how much she could handle!
Oh NO my friend , make no mistake....................they are not having access to "OUR FORUM". This is my home away from home ! I just was going to format it similiar to this and that is all ! This is OURS and the new one will be THEIRS !
I will be more than happy to take this on ! I just would like some ideas. Like I said perhaps Kinga could email me as well. Facebook sounds kid friendly ! And yes, it should be open to kids with families of MND , any and all !
I just checked out Proboards ......................looks good ! I will do more research on it as well............but now, before anything else , we need a name for our teen forum.................any suggestions ?
tajmom
Distinguished member
- Joined
- Apr 4, 2009
- Messages
- 138
- Reason
- PALS
- Diagnosis
- 09/2008
- Country
- US
- State
- VA
- City
- Fairfax
And here's the link: KALS | Facebook
indigosd
Very helpful member
- Joined
- Jun 22, 2009
- Messages
- 1,805
- Reason
- Lost a loved one
- Diagnosis
- 07/2009
- Country
- oz
- State
- oz
- City
- RURAL
Let's think about it and get something really COOL! Please no access to this forum at all and how will it be monitored? I also would like it to only allow children and that there is a process of approval-not just a open site that anyone can access immediately. There are some really bad people out here in cyberspace. That is why I thought that Kinga or Michele would be a good resource-they are young and hip, they are not actively involved as a CALS, computer savy and I know for Matthew at least, it isn't his momma :] I am the ONLY support that he has at this point but I know that he doesn't share everything with me in an effort to protect me. I will bet that your children do the same.
- Status
