Comments on: A port in the storm http://www.5minutesforspecialneeds.com/429/a-port-in-the-storm/ Support. insight. and inspiration for parents of children with special needs Thu, 09 Feb 2012 11:16:27 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Julie @ A Celebration Of Our Journey http://www.5minutesforspecialneeds.com/429/a-port-in-the-storm/comment-page-1/#comment-3053 Julie @ A Celebration Of Our Journey Mon, 06 Oct 2008 11:09:11 +0000 http://www.5minutesforspecialneeds.com/?p=429#comment-3053 I love this place. I love this place.

]]> By: Finding Normal http://www.5minutesforspecialneeds.com/429/a-port-in-the-storm/comment-page-1/#comment-3042 Finding Normal Mon, 06 Oct 2008 01:13:18 +0000 http://www.5minutesforspecialneeds.com/?p=429#comment-3042 I belong to a trisomy 9 forum online. It's so rare, and our doctors are all clueless. These other parents provide some insight into Addison's possible future medical and developmental issues. It's such a rare trisomy, and we have members from all over the world. It does help me feel more "normal". Another huge part of my support system is our therapists, PT especially. She's a special needs mama, and it's nice to be able to talk mic-key buttons and sleep studies with someone in person who understands. Blogland has given me an even bigger support network. I would someday like to help start a local support group, but I have no idea how to even go about that. I belong to a trisomy 9 forum online. It’s so rare, and our doctors are all clueless. These other parents provide some insight into Addison’s possible future medical and developmental issues. It’s such a rare trisomy, and we have members from all over the world. It does help me feel more “normal”.
Another huge part of my support system is our therapists, PT especially. She’s a special needs mama, and it’s nice to be able to talk mic-key buttons and sleep studies with someone in person who understands.
Blogland has given me an even bigger support network.
I would someday like to help start a local support group, but I have no idea how to even go about that.

]]> By: PeytonsMom http://www.5minutesforspecialneeds.com/429/a-port-in-the-storm/comment-page-1/#comment-3041 PeytonsMom Mon, 06 Oct 2008 01:09:05 +0000 http://www.5minutesforspecialneeds.com/?p=429#comment-3041 @Heidi http://www.curesearch.org/for_community/ - Cure Search has great resources for your teacher friend to learn more about cancer, not only the physical aspects, but the psycho-social and neuro-psych effects. It also has articles on supporting the student at school, but also for the teachers of any siblings, because they too are finding their lives in a whirlwind of change. I hope that might help. If she'd like more information, she could contact a social worker or child life specialist at the hospital for ideas on how to better support the family. I know they would love to help however they can. @Heidi

http://www.curesearch.org/for_community/ – Cure Search has great resources for your teacher friend to learn more about cancer, not only the physical aspects, but the psycho-social and neuro-psych effects. It also has articles on supporting the student at school, but also for the teachers of any siblings, because they too are finding their lives in a whirlwind of change. I hope that might help.

If she’d like more information, she could contact a social worker or child life specialist at the hospital for ideas on how to better support the family. I know they would love to help however they can.

]]> By: PeytonsMom http://www.5minutesforspecialneeds.com/429/a-port-in-the-storm/comment-page-1/#comment-3040 PeytonsMom Mon, 06 Oct 2008 01:02:18 +0000 http://www.5minutesforspecialneeds.com/?p=429#comment-3040 @Rickismom I don't judge anyone's way of coping, but when you do have those people in a support group who live beyond positivity in a place where they refuse to acknowledge the fears and the anxiety, they take away the safe place for the others who need to feel validated in those feelings. @Rickismom
I don’t judge anyone’s way of coping, but when you do have those people in a support group who live beyond positivity in a place where they refuse to acknowledge the fears and the anxiety, they take away the safe place for the others who need to feel validated in those feelings.

]]> By: Heidi http://www.5minutesforspecialneeds.com/429/a-port-in-the-storm/comment-page-1/#comment-3027 Heidi Sun, 05 Oct 2008 22:25:08 +0000 http://www.5minutesforspecialneeds.com/?p=429#comment-3027 How interesting that they have "camps." For us, there is a Foundation with a newsletter, blogs and a listserv for CdLS. All are very helpful. There is a conference every other year also and I have heard that these are fantastic. What support services would you suggest for teachers? My friend is a teacher who's former student is undergoing cancer treatments right now. It is a small school so the teachers and other students are affected too. They are trying to be helpful by sending the little girl cards, etc, but I thought there must be someplace for them the learn and get support. How interesting that they have “camps.” For us, there is a Foundation with a newsletter, blogs and a listserv for CdLS. All are very helpful. There is a conference every other year also and I have heard that these are fantastic.

What support services would you suggest for teachers? My friend is a teacher who’s former student is undergoing cancer treatments right now. It is a small school so the teachers and other students are affected too. They are trying to be helpful by sending the little girl cards, etc, but I thought there must be someplace for them the learn and get support.

]]> By: Rickismom http://www.5minutesforspecialneeds.com/429/a-port-in-the-storm/comment-page-1/#comment-3025 Rickismom Sun, 05 Oct 2008 21:37:49 +0000 http://www.5minutesforspecialneeds.com/?p=429#comment-3025 "that I could spill it out…the good, bad and ugly…and heads would nod, they would get where I was coming from because they’d been there and back already. It healed a raw, gaping wound inside of me." That's why I started a support group (for parents of children with DS)in my city. But sometimes I have a problem of "too rosey" moms, scaring the new moms off (who think the "too rosey" moms are NUTS! “that I could spill it out…the good, bad and ugly…and heads would nod, they would get where I was coming from because they’d been there and back already. It healed a raw, gaping wound inside of me.”

That’s why I started a support group (for parents of children with DS)in my city. But sometimes I have a problem of “too rosey” moms, scaring the new moms off (who think the “too rosey” moms are NUTS!

]]> By: Barbara http://www.5minutesforspecialneeds.com/429/a-port-in-the-storm/comment-page-1/#comment-3023 Barbara Sun, 05 Oct 2008 20:23:11 +0000 http://www.5minutesforspecialneeds.com/?p=429#comment-3023 "one great big, unlimited support group" Exactly. “one great big, unlimited support group”

Exactly.

]]> By: LauraJ http://www.5minutesforspecialneeds.com/429/a-port-in-the-storm/comment-page-1/#comment-3019 LauraJ Sun, 05 Oct 2008 18:46:25 +0000 http://www.5minutesforspecialneeds.com/?p=429#comment-3019 I've written a post in answer to your question. I’ve written a post in answer to your question.

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