Guest guest Posted May 16, 2004 Report Share Posted May 16, 2004 Nikki, I just wanted to respond because parts of your story remind me of what we went thru! I was barely 20 when I had , but he was my second baby~ I had them 11 mos apart! whew! had other problems that were diagnosed first, a bowel disease because he was unable to have a bowel movement at all, and required surgery. Over the following months it was so apparent to my husband and I that there was some developmental delay~ we even joked about it being Down Syndrome half a dozen times~ but we couldn't get anyone to listen to us!! Finally was diagnosed at 16 mos old. 's bloodwork showed 50% of the cells tested to have the trisomy 21. Now we actually walked out of that office that day, being told that because he was mosaic, he would be higher functioning... It really gave me such false hope and false security. I didn't work too hard with him, I didn't teach him sign...by your sons age, he was such an angry, frustrated lil guy!! He could understand everything we said, we couldnt understand anything he needed! didn't talk until approximately 4-5 years old. is 11 now, and in a special ed 5th grade class. A year and a half or so, he had to be changed to a severely handicapped class, because he was not progressing enough to stay in a special day class. He's a good kid behaviorally, and socially... but academically, he's still functioning on a K-1st grade level. So, you're not alone in having a child who isn't as " high functioning " as some others, or as some others think they should be~ Every child is unique though! Glad you found us! Angel Mom to 11, Mosaic Down Syndrome/Hirschsprung's Disease Lance 15, Tyler 12, 9, Jaeda 8 and Shayne 1 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 17, 2004 Report Share Posted May 17, 2004 Hi nicole, I live in the baltimore maryland area. Kaitee is seven and attends the public school system... Kaitee has just started talking in sentences the last year, and has actually become pretty understandable in the last couple months. Been thru that frustrating period too!!! She started in the early intervention program with the school when she was fifteen months, and received all her therapies thru the school since then. She receives speech three times a week, Ot once per week, pt twice per week and works in a special education setting with three other kids her age five days per week, participating in gym, music, computer lab and art with her regular class. The teachers are really awesome with her, and work with her well. She is about 24 months behind in language reading skills compared to the children in her special education classes, and farther behind in math . Our goal this year was to improve her socialization skills, and they have worked hard at finding ways to give Kaitee a chance to interact with the other kids her age. The behavior manager specialist handles all of Kaitees office referrals, and when I say all I mean she probably gets sent to the office more then anywhere else at this time... but they see improvement, and she has shown desire to attend school so things are working. they have worked out a even better program for her next year.. to where we can accomplish her remaining with her peers during socialization periods of school, and working one on one during her education hours.. which means a lot to me to know they care enough to try something new to this school. Debbi Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 18, 2004 Report Share Posted May 18, 2004 Nikki, Welcome to our Family! I am so glad that you found us! Any time you ever have a question or concern regarding Collin, please feel free to post it here! Please check out our website www.imdsa.com You will find lots of information about our organization there and by clicking the links provided you can discover how to join IMDSA. By joining, you will receive our information packet, our quarterly newsletter MOSAIC WORLD, and great discounts to IMDSA functions! We are planning our first MDS awareness convention on June 18-20,2004 at the Virginia Commonwealth University where ongoing MDS research is being conducted in Richmond,VA. You can find out all about the convention on our site. I would highly recommend that you attend Dr. Mac's workshop during the conference. Dr. Mac has great techniques to urge your child's communication. I, personally, used these techniques when my son was younger and we had fantastic results. If you have any questions or ever need anything, please contact me! Sincerely, Kristy Colvin IMDSA President MOM to Arron 23, 19, Tim 18 TOMARROW!(MDS), Stevan 17, and Garrett 8 IMDSA PO Box 1052 lin,TX 77856 www.imdsa.com Walton wrote: Ok I was asked to tell more about me so I will try. my name is everyone calls me nikki though. Collin will be 4 on may 24, and was diagnosed with mds when he was 3 weeks old so far they don't know how this is going to affect him. so far Collin is about 24 months behind, He still doesn't talk but a hand full of words and gets frustrated when he cant get some thing out. We tried to teach him signs so that he could communicate and he knows them but wont use them most of the time. Its frustrating for me because no one can tell me how this disorder will affect him and I am the type of person that wants to know everything now. I am working on that. Collin is my only child as I am only 23. I am glad god gave him to me. Even though at times I wonder what his plain for Collin is. from what I have read about mosaic downs Collin seems to be more affected then most. Collin is getting SSI benefits as he has from birth so that I could get the help I needed, I.e. the pt, ot, spt and all of the other therapist that he has worked with. I didn't like having to do that but in land if you want some of the services that are given to the disabled you have to apply for and receive SSI. That's all I can think of for now I guess you will learn more about me as I post stuff. Nikki the mother of Collin (age 3) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 19, 2004 Report Share Posted May 19, 2004 I dont know of any MDS meetings...you can contact the Parent Place in polis and see what they come up with. Your son is also old enough for the special olympics... they have a great program for the kids.. and you might meet others thru this. Debbi Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.