Guest guest Posted May 15, 2000 Report Share Posted May 15, 2000 Hi Ellen, I know all to well what you mean on the behavior. We are always going through some sort of battle, but only if we try and introduce something out of Cody's comfort zone. How is Bekah at transitions? Ugh, I dread the summer back to school transition....!!! He's a wonderful kid, and just gleems with happiness! Thanks Again! Intro I thought I had already subscribed to this list, but I did not send information about my son! I have a 7 year old MDS, he attends regular class, and is doing very well. His name is Cody. We live in Texas. I look forward to getting more information from others on Education, routine, so on... Misty Brown Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com And please don't forget to check the message board frequently...it's a great way to meet others who are affected by MDS, who are not on our mailing list! http://www.insidetheweb.com/mbs.cgi/mb778401************************************************* Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 3, 2001 Report Share Posted July 3, 2001 Dear , Welcome! I wish you best for you in your practice and hopefully you will learn a lot from this group. Sincerely, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2002 Report Share Posted March 7, 2002 Hi Kirsty, I agree with you that children with MDS are capable in learning. is 9 years old, has 50% downs and goes to mainstream school in the UK. She is doing very well in most areas of the national curriculum. The headteacher of the school has always taken a particular interest in and her development in school and has been very supportive. We had a private chat with the teacher last night at school about how well she was doing in certain subjects and what she was struggling with etc is now working towards a level 3 in literacy, which is average in her class, something we never thought possible. She is improving daily with comprehension and has a reading age on average between ages 8-9. All this is because of the help from the school. does however struggle with numbers.Working at level 2, at present she is on number bonds to 20 eg; (15 + 5=20) or (15-5 = 10) and times tables eg 1x 5=5. As long as she can cope day to day with money and simple maths, I'm not at all worried whether she gets to be Einstein ! Socially fits in well in school with both peers and teachers. She has a support helper in class for 15 hours a week, but we (us and the school) are working to ease this off as the support gives more independence. She understands that all children may need some help in school so she doesnt feel any different. Mainstream school has given her the chance to prove to the school that she can "fit in" although, to be honest, they don't really know what to expect of her because of people's (and teacher's) lack of knowledge of mds and it's consequences.(I work in school as a one to one helper with a special needs boy age 7, so i have knowledge of this) I think you are spot on when you say "It is hard when MDS children are a minority. You will know when it is right and don't let anyone tell you otherwise". You are the ones who devote your time to your children and understand them more than anyone else. You know what they can do and what they can't do. We treat at home the same as any of our other children, perhaps giving her a little bit more time and attention than the other's had. By being a part of this wonderful group, we have loved to hear the stories of how our kids do so well and we share the downside when kids and parents have problems. Some of the stories give us such encouragement. Anyway just thought I'd share how I felt with everybody. Judy (Mum to 9yrs mds) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 8, 2004 Report Share Posted July 8, 2004 Hello to all of you I may have posted once before, not sure, but here I go again. My name is Kerry--I am married to , age 51, stage 3 grade 4 cirrhosis from hepc. He has been through combo treatment once, for 24 weeks only because of his genotype (3a). Virus was clear at 3 months but came back after treatment. At this time, he is very fatigued and is losing muscle mass/weight. He does not have jaundice, ascites or edema yet. He has lots of digestive problems which I hear can be a part of this disease. We do not have insurance. At this point, his platelets are 91, WBC's are 3.7 We are waiting on the arrival of neupogen from the drug company, at which point the clinic dr is going to retreat him with pegasys for 48 weeks. He needs to get a transplant but again, no insurance and we do not qualify for medicaid because he is still working full time. We saw a disability lawyer a few days ago and we are filing for that. He really needs to be at home and get some rest. We have a little boy, 4 years old. I am scared. Thanks for reading this. Quote Link to comment Share on other sites More sharing options...
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