Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hey Jody, There were a few good messages a few days to a week ago from Debby B and Leah I think and even though it was Canadian might have some good information for you... I'll look back and see if I can find them for you too. Once Jodi Z gets back on she may have some good information too beings how that is her line of work too. I just registered Noah for Junior Kindergarten a couple of weeks ago ... so hard to believe, they grow (well ... get older) so quickly. Dawna Matt 13, 11, 8, Noah 3 RSS > > Hi > We have just started the long daunting task of getting Liam enrolled > for school next year. > It is early but I think we are going to need the time to get > everything in place. > I need as much info as I can get from those who have done this. > Australia is going to be different from America in funding etc, but > Im hoping the basic info to give out will be the same. > Liam will need to be tube fed at the moment he has 3 feeds a day > through his pump, so he would need at least 2 at school. > He is also still in Nappies(diapers) due to his chronic constipation > problems and inability to control his bowel, this may be rectified > with further diagnosis this year but I still have to plan for it. > I am finding it very difficult to put together info for the school. > I would like to use the Magic information but most of it is for > parents and the whole phenotype/ genotype thing at the beginning is > just confusing. Does anyone have a concise facts only description of > RSS? > What other issues need to be brought up?? > Hope someone gets what Im looking for here? > Any letters to schools or good resources would be appreciated. > Maybe this is something we could start a file on. > Thanks > Jody > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hi Jody, Speak to le, this is the area that she specialises in. (I'll send you her phone number.) Whilst I have no experience in the feeding and constipation issues Liam will face next year, I have plenty of experience with the physical problems an RSS child faces when starting school. I seem to have spent 's school life fighting for his rights in schools In Australia, the funding in government schools for a special needs child FAR outranks anything that a private school can offer. What you need to be doing now, is getting an assessment done by the Dept of Educations' area school councillor for your region. Her/she will assess Liam's needs and recommend any accommodations necessary. had this assessment done 12 months before he started school and the Educ Dept was EXCELLENT. Everything was in place for him the day he started school. Hint: If the Dept is not aware of any recommendations by September of this year, nothing will be in place for January 07 enrolments. You are very wise to be starting this process now. ne > > Hi > We have just started the long daunting task of getting Liam enrolled > for school next year. > It is early but I think we are going to need the time to get > everything in place. > I need as much info as I can get from those who have done this. > Australia is going to be different from America in funding etc, but > Im hoping the basic info to give out will be the same. > Liam will need to be tube fed at the moment he has 3 feeds a day > through his pump, so he would need at least 2 at school. > He is also still in Nappies(diapers) due to his chronic constipation > problems and inability to control his bowel, this may be rectified > with further diagnosis this year but I still have to plan for it. > I am finding it very difficult to put together info for the school. > I would like to use the Magic information but most of it is for > parents and the whole phenotype/ genotype thing at the beginning is > just confusing. Does anyone have a concise facts only description of > RSS? > What other issues need to be brought up?? > Hope someone gets what Im looking for here? > Any letters to schools or good resources would be appreciated. > Maybe this is something we could start a file on. > Thanks > Jody > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hi again Jody ... look at Debby's message post #54274... it might be of some help. Dawna > > Hi > We have just started the long daunting task of getting Liam enrolled > for school next year. > It is early but I think we are going to need the time to get > everything in place. > I need as much info as I can get from those who have done this. > Australia is going to be different from America in funding etc, but > Im hoping the basic info to give out will be the same. > Liam will need to be tube fed at the moment he has 3 feeds a day > through his pump, so he would need at least 2 at school. > He is also still in Nappies(diapers) due to his chronic constipation > problems and inability to control his bowel, this may be rectified > with further diagnosis this year but I still have to plan for it. > I am finding it very difficult to put together info for the school. > I would like to use the Magic information but most of it is for > parents and the whole phenotype/ genotype thing at the beginning is > just confusing. Does anyone have a concise facts only description of > RSS? > What other issues need to be brought up?? > Hope someone gets what Im looking for here? > Any letters to schools or good resources would be appreciated. > Maybe this is something we could start a file on. > Thanks > Jody > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hi Jodi - I really wish I could help but this is the very problem that we're having with in his junior kindergarten year. Just last week I posted looking for help with IEP suggestions. The school and we are at a complete loss as to what to say and do about needs (size aside). I have yet to find a really consise document that explains to others the nature of RSS and the possible behaviours, needs and 'problems' that might be exhibited. Recognizing that despite the commonalities our kids can have very different needs (Will is not on a feeding tube) Debbie B. responded to my query with some great ideas that maybe you could benefit from (it was 1-2 weeks ago). Hopefully any info that comes your way today will hopefully serve us as well. Thanks for the great question. Charlene, mom to , Ontario > > Hi > We have just started the long daunting task of getting Liam enrolled > for school next year. > It is early but I think we are going to need the time to get > everything in place. > I need as much info as I can get from those who have done this. > Australia is going to be different from America in funding etc, but > Im hoping the basic info to give out will be the same. > Liam will need to be tube fed at the moment he has 3 feeds a day > through his pump, so he would need at least 2 at school. > He is also still in Nappies(diapers) due to his chronic constipation > problems and inability to control his bowel, this may be rectified > with further diagnosis this year but I still have to plan for it. > I am finding it very difficult to put together info for the school. > I would like to use the Magic information but most of it is for > parents and the whole phenotype/ genotype thing at the beginning is > just confusing. Does anyone have a concise facts only description of > RSS? > What other issues need to be brought up?? > Hope someone gets what Im looking for here? > Any letters to schools or good resources would be appreciated. > Maybe this is something we could start a file on. > Thanks > Jody > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 17, 2006 Report Share Posted February 17, 2006 Hey Guys! I'll answer as best as I can. > Hi > We have just started the long daunting task of getting Liam enrolled > for school next year. > It is early but I think we are going to need the time to get > everything in place. > I need as much info as I can get from those who have done this. > Australia is going to be different from America in funding etc, but > Im hoping the basic info to give out will be the same. > Liam will need to be tube fed at the moment he has 3 feeds a day > through his pump, so he would need at least 2 at school. In America, your son would qualify for an Individual Education Plan based on 'Other Health Issue, aka: O.H.I. clause. You need a school that has a full time nurse who can handle the pump and/or bolus feeds. You need to have at the school anything needed that would help Liam in a blood sugar crash, or g-tube mishap. Extra bandages, soothing cream for the stoma, etc. I carry snacks in my purse and Connor's spare Mic-Key button set in the car with me " just in case. " You need to provide the school with a change of clothes and any necessary nappy supplies. We call them " Pull-ups " in America. > He is also still in Nappies(diapers) due to his chronic constipation problems and inability to control his bowel, this may be rectified with further diagnosis this year but I still have to plan for it. > I am finding it very difficult to put together info for the school. > I would like to use the Magic information but most of it is for > parents and the whole phenotype/ genotype thing at the beginning is > just confusing. Does anyone have a concise facts only description of > RSS? Liam needs to be tested to see where he is developmentally. This is usually done by the school with a range of Speech Therapist's, Occupational Therapists, Physical Therapists and Educational Specialists. Depending on his " ceiling of learning, " an IEP would be drawn up for him emphasizing the area's that needed extra help. The specialists will target fine motor, gross motor, speech articulation, reasoning, logic, use of language, socialization skills and cognitive skills. My concise def.of RSS: -Silver Syndrome is essentially, Pituitary Insufficency. Although the RSS child produces growth hormone, the body does not respond adequately and needs an extra boost of this hormone to grow at a normal rate. Recent research indicates that there is an interuption in the endocrine system that is not fully understood. The Pituitary Gland is the master gland in the body. If it is compromised, than every system in the body is affected. RSS most commonly affects the endocrine, skeletal, digestive, and reproductive systems. In regards to the digestive system, RSS is accompanied by severe gut motility issues, innate anorexia, dysphagia, GERD and hypoglycemia. Not all children with RSS will have every one of these symptoms and so a case by case scenario needs to be in place for education. The skeletal system of an RSS child can have body asymmetry in the arms, legs, head and torso. Scoliosis and Kyphosis can also be present in the RSS child. Depending on the severity of the case of RSS in the child, an educational setting will need the following: 1. A physical enviornment that enables the child to sit and move about normally (i.e. chairs & tables that are size appropriate, a stool by the drinking fountain, a personal aide if scoliosis, Kyphosis and body asymmetry are restricting their mobility and they need extra help to transfer on and off the potty or ambulate. 2. Instruction of the teacher and aides in what a Hypo-g crash looks like in your child and how to treat it. 3. A nurse who can administer his bolus feeds, or hook him up to a pump based on his feeding schedule. 4. The presence of food, or snacks at the child's desk as needed to keep hypo-g at bay. 5. Instructions to treat Liam by his age...not his size. People want to cuddle and coddle our kids. Nice, but they also need to learn independence. > What other issues need to be brought up?? In the blue pamphlet, the section titled " What Can I expect Regarding My Child's Cognitive Abilities? " Share that with them. It includes the info on ADD with our RSS kids. If Liam is prone to any of these things, it will come out in the tests or in the classroom enviornment. > Hope someone gets what Im looking for here? I get what you're looking for. However, I'm approaching this with an American slant. I hope your Aussie conversion goes well and that Liam starts the wonderful journey of learning with his peers. > Any letters to schools or good resources would be appreciated. I.E.P.'s are just that. Individual plans based on the needs of the child. You really have to tailor it to fit your child. Bravo to you for starting as early as you are. It nomrally takes 3 months here in the states if the system is running smoothly (hah hah hah!) Our poor teachers are underpaid and over worked. But they have passion for teaching. Good Luck My Dear! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Hi Jody, Just catching up on lots of messages and saw your message about starting school. Tyler's been at school for nearly 2 years now. We really only had the feeding issue to deal with, so I can't help out with the other questions. Tyler has about the same number of feeds per day as Liam, but we manage to give him only one feed at school (Tyler has a whole can in about 5 minutes ... you may have to do two feeds if Liam can't have a whole can in one session). We give him a tube feed for breakfast at our house. Then, at least an hour before lunch, the school nurse gives him a tube feed of one can. At his old school, there was no nurse, so a couple of people from the office were trained to do it, and they had no trouble even though they have no medical training. He has lunch at school, but he doesn't really eat that much. I don't think he's too full from the tubefeed - just hard to get him to eat. We have chosen not to have anyone help him eat lunch since he likes to talk to his friends and hang out with the other kids plus he's fine for energy at school. He can then have a can after school. Since moving, we changed formulas b/c we now have to pay for it ourselves. We found a formula that's less expensive than pediasure and it gives him 350 calories per can instead of 237. We love it, and the doctor says it's fine for him - not sure how it would be for younger children or what Dr. H would say about it. ALSO: When Tyler first turned 5 and went to school, we gave a talk to all the children and some of the parents to explain his feeding tube. This worked well. He didn't show the kids his tube at that time, but was happy to show it to kids on the playground. They're so young and curious at that age, and he never had any problems. HOWEVER: We moved when he was 6 1/2. At his new school, we debated whether or not to give the same sort of talk to his new classmates. By this stage, Tyler was firmly against bringing any attention to it. I thought we should do it, but I decided to go with his decision b/c he was pretty determined. He has been absolutely fine. His friends definitely know about it b/c lots of them have seen it if he changes shirts. I don't know if other kids are aware of it, but no one gives him any hassles. Hope you guys are well. BTW - one of Tyler's best friends here is Cameron - born in Australia / Australian mum/American dad. They have a great time talking about Qantas and what they do on their long plane trips. (mum to Tyler - about 117 cms, 17 kgs, just turned 7) > > Hi > We have just started the long daunting task of getting Liam enrolled > for school next year. > It is early but I think we are going to need the time to get > everything in place. > I need as much info as I can get from those who have done this. > Australia is going to be different from America in funding etc, but > Im hoping the basic info to give out will be the same. > Liam will need to be tube fed at the moment he has 3 feeds a day > through his pump, so he would need at least 2 at school. > He is also still in Nappies(diapers) due to his chronic constipation > problems and inability to control his bowel, this may be rectified > with further diagnosis this year but I still have to plan for it. > I am finding it very difficult to put together info for the school. > I would like to use the Magic information but most of it is for > parents and the whole phenotype/ genotype thing at the beginning is > just confusing. Does anyone have a concise facts only description of > RSS? > What other issues need to be brought up?? > Hope someone gets what Im looking for here? > Any letters to schools or good resources would be appreciated. > Maybe this is something we could start a file on. > Thanks > Jody > Quote Link to comment Share on other sites More sharing options...
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