tag:blogger.com,1999:blog-401303964563152307.post7752650573589201247..comments2024-03-28T21:36:55.157-04:00Comments on Love That Max : This girl's small act of kindness toward my son was actually giganticEllen Seidmanhttp://www.blogger.com/profile/01433429847255621203noreply@blogger.comBlogger16125tag:blogger.com,1999:blog-401303964563152307.post-5488028877901957772015-04-03T14:42:39.402-04:002015-04-03T14:42:39.402-04:00Ugh now you made me cry! Yay for Sadie abd yay for...Ugh now you made me cry! Yay for Sadie abd yay for max :)Anonymoushttps://www.blogger.com/profile/17312836542709163886noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-65052253270413393572015-04-03T07:33:39.930-04:002015-04-03T07:33:39.930-04:00I have CP - right side hemiplegia , I'm an ad...I have CP - right side hemiplegia , I'm an adult now but I remember those small acts of kindness from childhood and through to today and they really touch my heart. The small acts of kindness generally involve people having an instinctive awareness about how to assist me in a situation that is very quick and in the moment, and then politely offering that assistance and that person seeing it as NO BIG DEAL and being completely non judgemental about it.<br />Examples - <br />1.Boy I hardly knew who was sitting in a car with me as I was putting my seat belt on ( my right hand doesn't do much in the way of fine motor skills) and this boy leaned over and held the seat belt clamp still for me- which made it easier for me to put the belt on with one hand .<br />2.Kids at school holding the ruler for me as I ruled margins on a page (one girl volunteered to rule all the margins in my exercise book for me - I was so grateful)<br />3.And also in high school - I realised I had been drippling a bit (I sometimes dripple on my right side when I'm tired) anyway I had been drippling a bit in class at high school and I looked over at a friend who I realised would have seen and I said "oh I have been drippling did you see that"- just to make light of it. And this friend said oh yes you do that sometimes- she said it in a no big deal doesn't matter non judgemental way . I just appreciated that it was no big deal to her. Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-32618592253486460672015-04-02T21:09:39.039-04:002015-04-02T21:09:39.039-04:00Kate, thanks for sharing your perspective, and I t...Kate, thanks for sharing your perspective, and I totally see where you are coming from. From my perspective, as a mom, it pains me to see Max being excluded by peers, and so this girl reaching out to help him was a welcome thing. Especially because the drool can be alienating. And Sadie only meant well, obviously. But you are right, the best thing for Max would be for him to do this for himself one day. He lacks that awareness right now, and it's something to be nurtured in him. Again, I appreciate your making me consider this. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-87675081422702979842015-04-02T20:20:06.380-04:002015-04-02T20:20:06.380-04:00Speaking from the perspective of someone with a de...Speaking from the perspective of someone with a developmental disability, this story kind of weirds me out. Sadie performed a personal task, reached into Max's space, without asking him. That's a violation of his personal boundaries to me. People think it is okay to violate the space of disabled people because they think they are helping them, but I think all kids should be taught that their body belongs to them, only them, and that they don't touch another person outside their family without that person's express permission.Katehttps://www.blogger.com/profile/12098857809058503748noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-20410077854449145132015-04-02T16:56:36.765-04:002015-04-02T16:56:36.765-04:00That's one of those special talismans you hold...That's one of those special talismans you hold onto during a rough day. I am so happy this happened and you saw it. This is the good stuff. Anonymoushttps://www.blogger.com/profile/11013016107158933369noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-65270691108540322332015-04-02T12:20:30.847-04:002015-04-02T12:20:30.847-04:00Yes, she is and yes, they are. Yes, she is and yes, they are. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-24591055494455022382015-04-02T12:20:17.846-04:002015-04-02T12:20:17.846-04:00SO glad to hear this has worked for your Max! Last...SO glad to hear this has worked for your Max! Last spring, I took Max to see an ENT who works with kids with special needs. He talked about surgery to reverse his salivary glands (not remove any). I'm planning to try non-invasive options first before we'd go that route. Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-72559296420636817542015-04-02T12:18:17.683-04:002015-04-02T12:18:17.683-04:00Thanks, Courtney. Yes, he's had Botox injectio...Thanks, Courtney. Yes, he's had Botox injections in his left hand, which was helpful with loosening them up. When we tried Botox in his salivary glands, though, it didn't have any effect. Perhaps it is worth trying again, I appreciate the reminder!Ellen Seidmanhttps://www.blogger.com/profile/01433429847255621203noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-20528861979836881502015-04-02T11:25:35.721-04:002015-04-02T11:25:35.721-04:00Have you considered surgery to remove salivary gla...Have you considered surgery to remove salivary glands? We did that for our Max (CP with spastic quadriplegia) about a year ago, and it's given us a huge increase in quality of life. He's much younger than your Max, though (he's just short of 5), and it might not be as well received at an older age. Plus, the scars on his neck from the surgery are still quite noticeable. We've been able to ditch his bandanas, though, and don't have to worry about the soaked shirts smelling of saliva.<br /><br />Kennoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-74436596825439665882015-04-02T10:52:55.637-04:002015-04-02T10:52:55.637-04:00Didn't see that coming. Actually brought a tea...Didn't see that coming. Actually brought a tear to this old lugs eye. What a great kid.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-57918389949473897462015-04-02T10:30:42.139-04:002015-04-02T10:30:42.139-04:00LOVE!LOVE!Anonymoushttps://www.blogger.com/profile/02627528571447977873noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-32029620893788576862015-04-02T09:23:35.135-04:002015-04-02T09:23:35.135-04:00That is indeed so nice....n Max looks so handsome ...That is indeed so nice....n Max looks so handsome pallavinoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-58879653352988983342015-04-02T09:01:54.319-04:002015-04-02T09:01:54.319-04:00Sounds like Sadie is a wonderful girl!
You may als...Sounds like Sadie is a wonderful girl!<br />You may also want to talk to Max's doctors about Botox injections for the drooling. I believe I remember reading he had Botox in the past for his spasticity. Botox is great because it stays in the salivary glands, it does not spread through the body and cause side effects. I'm a PA at a neurology practice and we have quite a few adult CP patients that receive Botox injections for sialorrhea and it is very effective for them. Courtney Kennedyhttps://www.blogger.com/profile/07144532202512465441noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-38713171681241936532015-04-02T08:45:17.694-04:002015-04-02T08:45:17.694-04:00Aww I love it. You're so right. It's not...Aww I love it. You're so right. It's not about 1 time grand gestures. (Even though those are nice). But really, it's about good attitudes and genuine respect and the way we treat each other everyday. Deeniehttp://www.lifeonthejtrain.wordpress.comnoreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-28979433290267195442015-04-02T08:38:08.089-04:002015-04-02T08:38:08.089-04:00Menschy kid, raised right. (And I've always lo...Menschy kid, raised right. (And I've always loved the name Sadie...)Marjoriehttps://www.blogger.com/profile/08086300075775926044noreply@blogger.comtag:blogger.com,1999:blog-401303964563152307.post-67171464369637151012015-04-02T06:49:00.757-04:002015-04-02T06:49:00.757-04:00Sadie sounds like a wonderful girl raised by wonde...Sadie sounds like a wonderful girl raised by wonderful parents.Kathrynnoreply@blogger.com