Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 > > > Date: 2004/04/09 Fri AM 11:01:58 CDT > To: <MosaicDS > > Subject: Re: Welcome Aileen & ! > > ^^^^^^Aileen. I don't mind the lengthy messages. I know that once you meet someone, you have a million and one questions to ask. Zackary was about 14 months before he could hold his cup, he crawled at around the same time. He walked fairly quickly after that, I think he was about 22 months. He could say dada at around 16 months. I was so frustrated because I was the one doing everything and he said daddy first. I know what you mean about seeing around other " normal " kids. I forget that Zack has MDS unless I see him around other kids. He can do everything physically for a 10 year old(ride a bike, jump rope, and he hits a ball better than his older brother), but his speech is very bad. From all my research, I thought that MDS kids were be higher functioning than children with Trisomy 21. But, not so with Zack. It is very frustrating because he sometimes doesn't know how to answer simple questions(What did you have for lunch, where are your tennis shoes). I have a good friend that has a child with Trisomy 21 and he can identify colors, shapes, days of the week. We live in a very rural area and the choices for schools are difficult because I have to work and transportation is only provided to the public school, which is sufficient, but I know Zack could do better if I was in a different situation. I'm the one apologizing for the lengthy message now!!!!! Once I start talking(typing) I don't know when to stop. I hope you have a great Easter. I will be offline until Monday. . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 9, 2004 Report Share Posted April 9, 2004 I think that everyone must have us confused with someone else.....my name is Krystia and my daughter's name is Midori. expresstax@... wrote: > > > Date: 2004/04/08 Thu PM 12:11:14 CDT > To: MosaicDS > Subject: Welcome Aileen & ! > > ^^^^Hello Aileen. My name is and I have a 10 year old son, Zackary, with MDS. I can totally understand how frustrating it is to go to therapy all the time. When Zack was young, our world revolved around therapy, doctor visits, and trying to cope. I also, got divorced when Zack was one. My husband wasn't able to deal with having a child with a disability.(most men can't, notice I said most, not all). I wish I could tell you that it gets alot easier as they get older. The challenges change. Soon you'll be chasing her around, then school starts, then sports or girl scouts, .... I do believe that it got easier for me. I am not sure if I just became better at coping or if life is easier as the children get older. Do you have any other children? I have discovered that Zack's little sister is able to communicate with him and teach him things better than I can. I am so glad that I am able to talk to other parents. It seems to make me feel that the things that I worry about are not so silly. THANKS. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 11, 2004 Report Share Posted April 11, 2004 Aileen, I am very glad that you are here with us, and that you now have the resources that you need to help your daughter. I will look back through my records and see if I find your application. (I have gotten so many in the past few weeks, that I can not remember who all have applied) But, I wanted you to know, that our membership dues are $25.00, not $40.00. So, please go to our website www.imdsa.com and re-look over the site, perhaps you are thinking of a Ds group. I am sorry that you wont be able to come to the convention. We are looking into making video tapes for those that can not attend. Although you wont have the same experience as being there, at least you could see what the speakers have to say. Kristy Aileen Schwarz wrote: Dear Kristy, Thank you so much for the wonderful welcome! I have been welcomed by a lot of people so far via email. What a terrific organization you must have! I am excited about getting to know everyone and possibly making some new friends in the process. I wish I could attend that convention in VA, but it's kind of a long journey for me, I live in CO. I have joined the IMDSA (I'm pretty sure that's the one), but I have yet to send in the $40. Thank you again for the welcome, and look forward to chatting with you and everyone else more soon. Aileen Schwarz Welcome Aileen & ! Dear Aileen and , Welcome to our family! I am so glad that you found us! Here you will find a loving family with open arms always willing to help! If you have any questions or need any advice, this is the place to go! I remember those frustrating moments with my own son, now 17. He was a late walker and a late talker, but now, he is doing wonderfully and most of the time, I have to ask him to quit talking! lol Is scheduled to begin Speech Therapy? And, does she receive Occupational Therapy? It seems to me that 2x a month for PT is not a whole lot. Perhaps they can increase that? Please concider joining IMDSA at www.imdsa.com . By joining, you will receive our parent packet full of MDS information and inspirations, our quarterly newsletter, MOSAIC WORLD, and great discounts to IMDSA functions! We are currently planning our MDS awareness convention to be held on June 18-20,2004 at the Virginia Commonwealth University in Richmond,VA where the ongoing MDS research is being conducted. We will have a variety of speakers all touching topics that pertain to your child. If you have any questions, or need any thing, please do not hessitate to contact me. Sincerely, Kristy Colvin IMDSA President IMDSA PO Box 1052 lin,TX 77856 USA www.imdsa.com The only handicap a person has are the people around them! Mom to Arron 22, 19, Tim 17 (MDS), Stevan 16, and Garrett 7 wrote: Yet another new family!!!! She wrote: My name is Aileen. My daughter, was diagnosed with Mosaic Down's Syndrome when she was 3 months old. She is now 1 year and still cannot crawl, walk or say anything. She is in physical therapy 2x a month, working on her gross motor skills. Frustrating as it is, we still work with her. I had to leave her father when she was just 4 months old because of abuse. We have a much better life now, and all my time is focused on her and her well-being. I read some of the stories on the website, and I must say how blessed I am that has almost no health problems. her only problem is her thyroid, but she is medicated for that. She also needs glasses, but not for a while. The stories those people told about feeding tubes and things of that nature broke my heart. is special, I think. I'm happy there is a website designed for people like me. Thank you for the opportunity to share and gain the knowledge I need to help my child. Aileen Schwarz Won't you please consider adding your personal story on the MDS website today? http://www.mosaicdownsyndrome.com ************************************************* Become a member of IMDSA at http://www.imdsa.com ************************************************* MDS MESSAGE BOARD - http://www.mosaicdownsyndrome.com/discus ************************************************* Quote Link to comment Share on other sites More sharing options...
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