Guest guest Posted March 26, 2001 Report Share Posted March 26, 2001 Hi Aimee, So, 11 seems to be the magic number? I think that's right on target : ) There is another girl here in Maui that has systemic JRA. She's a year older than . Starting this year they're both in the same school. I had hoped that they might become really good friends and hang out together but ... Josh says she's very shy and quiet, they are in different classes and have lunch at different times, and he'd rather hang out with the guys. The children here with JRA do go away for 3 days each year, to a special camp on Oahu. really enjoys that and looks forward to it each year. He calls those kids his JRA Friends. Aside from that, and the days the doctors fly over here to Maui every month for the JRA clinic, the children don't get together formally. Josh does have other friends who take meds regularly, though. One for asthma, one for ADHD. He hasn't seemed to think that taking meds makes him different in a bad way. When he sleeps over at a friend's house, he gladly carries his pill box with him. When his friends ask questions about the meds, he talks to them about it with no reservations. He has a close-knit group of about 10 best friends in our neighborhood. They've all grown up together and Josh has never gotten any slack from having JRA or needing to take medicine for it. They've always been really supportive. Well, Josh is now standing over my shoulder as I type. He wants to get online! I guess I better say goodbye, for now. Thanks for your message, Georgina Georgina, Looks like you have lots of company on this issue! I know this is typical with any teen who has a chronic illness. I am a hospital social worker and have seen many pregnant, diabetic teens who would almost rather die than admit that they will always need medicine. Thay don't want to be different from everyone else and they feel cheated of a " normal life " . I have a son with ADHD. He is thirteen and hates taking medicine. noncompliance is a big problem with that disease because ADHD kids don't see that their behavior is a problem for everyone else!!! Anyway... the point is that he takes his meds mostly because there are other kids in school who have ADHD too. Its that " peer " thing. Does Josh have any friends, e-mail pals, or anyone who he could pal with that has JRA? That might make him feel more normal. I'm dreading that with Karl. He will be eleven in a few months and that is when the noncompliance stuff begins in earnest. Aimee Moles Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 10, 2001 Report Share Posted July 10, 2001 You could eat however you like when you go out to dinner, but as you mentioned, you will pay for it later with bodily pain. Just mention to your hosts that you have very specific dietary needs and although the meal looks great, you just can't eat everything presented. When I first started this diet, I was AMAZED at the many people who tried to " graciously " sabotage my food lists with avoids. I just remained FIRM but polite, and they got the idea. Now whenever I go out to friends for dinner, they have prepared something just for me (like, a plain steak and a good green salad with nothing on it and plain steamed broccoli -- which I can eat by itself) and I bring my own condiments. Aloha CB Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 11, 2001 Report Share Posted July 11, 2001 I very much agree with Cheryl's note. For me this works best: I educate my environment. It's a tough job, you are something like a black sheep or maybe even a cuckoo first, but you will be amazed how quickly they will accustom to your needs. For me it's a comlete success with my mother-in-law, my brother and our friends where we might turn up for an invitation. When we go out, I choose restaurants where I can explain what I want. There are quite a few places that work for me. Good luck. Rose Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 Amen to that,CB.After your mail " Digest number 682 " ,I don´t think theres many dare serve you potatoes or pork. And after eating out twice this week and having to stay very close to the bathroom today(can´t run,my body´s not obeying orders again)I agree entirely with you. Regards, . RE: Re: Compliance > > CB > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 In a message dated 3/8/2003 8:02:34 PM Eastern Standard Time, pastmidvale@... writes: > Daddy, Daddy, Where are you? repeated at least 4 > times before I was able to rush to Elie's side where he grinned at me and > said " Daddy, not you, eat with me " . The attention we got would have led > you > to think the child had been abandoned at curbside. We were 10 feet way. > > So much for not drawing attention to oneself. LOLOL Sara!!!! Well, Maddie has no verbal words, but is quite clear when she wants one of us over the other.....it's called a shove....LOL Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2003 Report Share Posted March 11, 2003 Trisha wiggles her fingers at us if she want us to come over. lol. We had Trisha's IEP meeting today, it actually went very smooth. We decided to keep her in where she is for another year but begin transitioning her to the middle school over the next school term. They will start the transistioning in Sept. hoping to get her ready for the following year. She does not like to be around older kids too much so we are hoping that slowly adjusting her to the transition will help when the time comes, if not then we will look for alternative schooling. I have a request that maybe hard to fill, but her teacher asked if I had a picture of a bookbag being unpacked. It seems Trisha is being stubborn about unpacking the bookbag and they want to include that on her picture schedule. I have looked and looked and can't find a pic of a bookbag that is either opened or looks like it's being unpacked/packed. If anyone has suggestions please let me know. Thanks, Carol April is Autism Awareness Month Trishasmom She isn't typical, She's Trisha! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 12, 2003 Report Share Posted March 12, 2003 In a message dated 3/11/2003 4:06:35 PM Eastern Standard Time, Csvillars@... writes: > It seems Trisha is being stubborn about > unpacking the bookbag and they want to include that on her picture > schedule. > I have looked and looked and can't find a pic of a bookbag that is either > opened or looks like it's being unpacked/packed. If anyone has suggestions > > please let me know. Carol, Take a picture of her actual book bag and laminate it. We use real pics all the time (CVS must think I'm nuts with all the pics they develop). Donna Quote Link to comment Share on other sites More sharing options...
Guest guest Posted November 16, 2009 Report Share Posted November 16, 2009 What is this compliance about? Never heard this before. Thanks for all the wonderful info. I'm getting more and more confident that Matt is going to be ok!! Quote Link to comment Share on other sites More sharing options...
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