Guest guest Posted August 19, 2009 Report Share Posted August 19, 2009 Hello Ava! and welcome!! Casey T. Morton IMDSA NewsLetter Editor ________________________________ To: mosaicds Sent: Wednesday, August 19, 2009 6:56:18 AM Subject: Welcome new family! Hi Everyone We have a new family joining us today. Here is what they had to say...... My daughter Ava, 2 1/2, is in the process of getting her genetic testing. The geneticist seems states that mostly every thing is pointing at MDS so we are going for further testing. Welcome to our family! I am so glad you have joined us. Please tell us more about you and Ava. What is your name? Please feel free to ask any questions you have here. We will all be very happy to share our experiences. When do you go for the testing? Kristy-Mom to Arron 27, 24, Tim 23 MDS, Stevan 22 and Garrett 13 Kristy Colvin IMDSA President ~~~~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~~~ ~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa. org http://www.mosaicmo ments.today. com Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 18, 2010 Report Share Posted April 18, 2010 HI Mitch and Missy, What state are you from? Is Lainy on an IEP right now? If not, I would think that she would benefit from having one in place. In order for you to get your daughter the services that she will need, there needs to be some type of label like speech delay, or learning disability along with her diagnoses of mDs. I would recommend that you request for a full evaluation in ALL areas! The school will do their evaluations and then by those you will see where she is at, compared to the " typical kids " . Don't be afraid to ask questions like, what are the other kids her age reading level and what is her reading level? Just remember whenever you request anything from the school ALWAYS do it in writing and keep a copy for yourself. You can even do it by e-mail, which might be the easiest way of keeping a " paper trail " . As I like to always say " if is it's not in writing then it NEVER happened " Another thing to keep in mind is that no matter what if the school comes back and says well we don't have enough money (budget) , staff, room, or not enough time, you say ok thanks, can you please give me a prior written notice of why you can't give my child services for whatever reason they tried to give you. MONEY, STAFF, ROOM, and TIME are NOT our problems. If you have any more questions please feel free to ask. You are always welcome to call me too. Good luck!! Hellard IMDSA President brandy@... ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org > Hi everyone! We have a new family joining us today. Her is what she > had to say... > > My daughter was diagnosed with MDS at birth in 2003. She met every > milestone. > We started seeing slight problems in Kindergarten. We don't > know enough > about what to expect from MDS in the coming years. > > Welcome to our group! Please tell us more about you and your > daughter. What are your names? What are the slight problems that she > is having? Does the school know that she has mDs? Did she ever > received services like..OT, PT, or speech? > > Just know that you are not alone, there are a lot of great people on > this e-group that will be here to give you great advice, and support. > > Hellard > > IMDSA President > > brandy@... > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > International Mosaic Down Syndrome Association > > PH: > > Toll Free: 1-888-MDS-LINK > > http://www.imdsa.org > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 When you do get a full evaluation, the report should contain information about where she is performing compared to her similar age peers. The big question in determining if a child will qualify for services is this, " Does the child's disability have an adverse effect on his/her educational performance? " The committee has to address this question. Also, a detailed statement from her doctor stating her medical condition will be useful in the evaluation process. A piece of advice, though. If you get your doctor to write a statement, make sure s/he says something more definitive than, " Lainy ____________ has mosaic Down syndrome and could benefit from an IEP. " LOL! MOST kids could BENEFIT from an IEP! The question is whether their disability has an adverse effect on their educational performance. One other thing. If you request a full evaluation this late in the school year, be prepared for the possibility that it will not be completed until sometime next fall. Legally, the school has 60 school days to complete an evaluation from the time permission was obtained in a formal meeting. Right now, schools are gearing up for state testing, final exams, end of the year " business. " Plus, an evaluation takes a long time and there are probably already a string of students ahead of your daughter to be tested. Sixty school days is quite a long time, so be patient. GOOD LUCK! A. Special Educator Simon Kenton HS 11132 Madison Pk. Independence, KY 41051 (859)960-0224 cynthia.jones@... ________________________________ From: MosaicDS on behalf of Hellard Sent: Sun 4/18/2010 11:38 AM To: MosaicDS Subject: Re: Welcome New family! HI Mitch and Missy, What state are you from? Is Lainy on an IEP right now? If not, I would think that she would benefit from having one in place. In order for you to get your daughter the services that she will need, there needs to be some type of label like speech delay, or learning disability along with her diagnoses of mDs. I would recommend that you request for a full evaluation in ALL areas! The school will do their evaluations and then by those you will see where she is at, compared to the " typical kids " . Don't be afraid to ask questions like, what are the other kids her age reading level and what is her reading level? Just remember whenever you request anything from the school ALWAYS do it in writing and keep a copy for yourself. You can even do it by e-mail, which might be the easiest way of keeping a " paper trail " . As I like to always say " if is it's not in writing then it NEVER happened " Another thing to keep in mind is that no matter what if the school comes back and says well we don't have enough money (budget) , staff, room, or not enough time, you say ok thanks, can you please give me a prior written notice of why you can't give my child services for whatever reason they tried to give you. MONEY, STAFF, ROOM, and TIME are NOT our problems. If you have any more questions please feel free to ask. You are always welcome to call me too. Good luck!! Hellard IMDSA President brandy@... <mailto:brandy%40imdsa.org> ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org <http://www.imdsa.org/> > Hi everyone! We have a new family joining us today. Her is what she > had to say... > > My daughter was diagnosed with MDS at birth in 2003. She met every > milestone. > We started seeing slight problems in Kindergarten. We don't > know enough > about what to expect from MDS in the coming years. > > Welcome to our group! Please tell us more about you and your > daughter. What are your names? What are the slight problems that she > is having? Does the school know that she has mDs? Did she ever > received services like..OT, PT, or speech? > > Just know that you are not alone, there are a lot of great people on > this e-group that will be here to give you great advice, and support. > > Hellard > > IMDSA President > > brandy@... <mailto:brandy%40imdsa.org> > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > International Mosaic Down Syndrome Association > > PH: > > Toll Free: 1-888-MDS-LINK > > http://www.imdsa.org <http://www.imdsa.org/> > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 19, 2010 Report Share Posted April 19, 2010 Mitch and Missy, (11) has MDS, and her school wanted to put her in a life skills classroom rather than a 'regular' classroom because she had issues with focus and dis-tractability. She would take forever to walk down the hall because she was looking at all the items hanging on the walls, she could not finish a worksheet because a bird would be singing outside the window. I had her evaluated by a neurologist and yes she had ADD too - one little tiny pill (less medicine than the synthroid she takes) she is on the smallest does of anti-ADD meds but it did the trick she is back on track and catching up to where she would have been. She is 1 year behind in reading and 2 years behind in Math - but I will get her there. It just takes time and effort. Darlene On Sun, Apr 18, 2010 at 6:10 PM, , - Kenton County < cynthia.jones@...> wrote: > > > When you do get a full evaluation, the report should contain information > about where she is performing compared to her similar age peers. The big > question in determining if a child will qualify for services is this, " Does > the child's disability have an adverse effect on his/her educational > performance? " The committee has to address this question. Also, a detailed > statement from her doctor stating her medical condition will be useful in > the evaluation process. A piece of advice, though. If you get your doctor to > write a statement, make sure s/he says something more definitive than, > " Lainy ____________ has mosaic Down syndrome and could benefit from an IEP. " > LOL! MOST kids could BENEFIT from an IEP! The question is whether their > disability has an adverse effect on their educational performance. One other > thing. If you request a full evaluation this late in the school year, be > prepared for the possibility that it will not be completed until sometime > next fall. Legally, the school has 60 school days to complete an evaluation > from the time permission was obtained in a formal meeting. Right now, > schools are gearing up for state testing, final exams, end of the year > " business. " Plus, an evaluation takes a long time and there are probably > already a string of students ahead of your daughter to be tested. Sixty > school days is quite a long time, so be patient. GOOD LUCK! > > A. > Special Educator > Simon Kenton HS > 11132 Madison Pk. > Independence, KY 41051 > (859)960-0224 > cynthia.jones@... <cynthia.jones%40kenton.kyschools.us> > > ________________________________ > > From: MosaicDS <MosaicDS%40yahoogroups.com> on behalf of > Hellard > Sent: Sun 4/18/2010 11:38 AM > To: MosaicDS <MosaicDS%40yahoogroups.com> > > Subject: Re: Welcome New family! > > HI Mitch and Missy, > > What state are you from? Is Lainy on an IEP right now? If not, I would > think that she would benefit from having one in place. > > In order for you to get your daughter the services that she will need, > there needs to be some type of label like speech delay, or learning > disability along with her diagnoses of mDs. > > I would recommend that you request for a full evaluation in ALL areas! The > school will do their evaluations and then by those you will see where she is > at, compared to the " typical kids " . Don't be afraid to ask questions like, > what are the other kids her age reading level and what is her reading level? > > > Just remember whenever you request anything from the school ALWAYS do it in > writing and keep a copy for yourself. You can even do it by e-mail, which > might be the easiest way of keeping a " paper trail " . As I like to always say > " if is it's not in writing then it NEVER happened " > > Another thing to keep in mind is that no matter what if the school comes > back and says well we don't have enough money (budget) , staff, room, or not > enough time, you say ok thanks, can you please give me a prior written > notice of why you can't give my child services for whatever reason they > tried to give you. MONEY, STAFF, ROOM, and TIME are NOT our problems. If you > have any more questions please feel free to ask. You are always welcome to > call me too. Good luck!! > > Hellard > > IMDSA President > > brandy@... <brandy%40imdsa.org> <mailto:brandy%40imdsa.org<brandy%2540imdsa.org>> > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > International Mosaic Down Syndrome Association > > PH: > > Toll Free: 1-888-MDS-LINK > > http://www.imdsa.org <http://www.imdsa.org/> > > > > > Hi everyone! We have a new family joining us today. Her is what she > > had to say... > > > > My daughter was diagnosed with MDS at birth in 2003. She met every > > milestone. > > We started seeing slight problems in Kindergarten. We don't > > know enough > > about what to expect from MDS in the coming years. > > > > Welcome to our group! Please tell us more about you and your > > daughter. What are your names? What are the slight problems that she > > is having? Does the school know that she has mDs? Did she ever > > received services like..OT, PT, or speech? > > > > Just know that you are not alone, there are a lot of great people on > > this e-group that will be here to give you great advice, and support. > > > > Hellard > > > > IMDSA President > > > > brandy@... <brandy%40imdsa.org> <mailto:brandy%40imdsa.org<brandy%2540imdsa.org>> > > > > > ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ > > > > International Mosaic Down Syndrome Association > > > > PH: > > > > Toll Free: 1-888-MDS-LINK > > > > http://www.imdsa.org <http://www.imdsa.org/> > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Hi ! My name is Tacia and I also have a 4 month old daughter. Her name is Olivia and she was diagnosed with MDS at birth. She is an absolute joy, just had her 4 month check-up and all is well! Where do you live? We live in Northern California, near San Francisco. How is Natalia doing? Always nice to see more parents of infants here. Welcome! Tacia, Mom to Olivia 4 months Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 HI TACIA!! I'M IN SOUTHERN CALIFORNIA, THANKS GOD NATALIA IS DOING JUST FINE. JUST HAS HER 4 MONTH CHECK-UP AND EVERYTHING IS GOING WELL.SHE WAS BORN HEALTHY ,WITH NO OTHER ISSUES REALATED TO MDS!!SHE;S DOING REALLY GOOD,HAS GREAT MUSCLE TONE AND SHE'S ALSO A JOY!!SEND MWE PICS OF OLIVIA AND WILL ALSO SEND YOU OF NATALIA! > > Hi ! > > My name is Tacia and I also have a 4 month old daughter. Her name is Olivia and > she was diagnosed with MDS at birth. She is an absolute joy, just had her 4 > month check-up and all is well! Where do you live? We live in Northern > California, near San Francisco. How is Natalia doing? Always nice to see more > parents of infants here. Welcome! > > Tacia, Mom to Olivia 4 months > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 6, 2012 Report Share Posted April 6, 2012 Hi everyone! We have a new family joining us today, and here is what they had to say... Here is a basic bit of information. Our 9 month old child was just diagnosed with 23% MDS on March 21st(yes, I know the irony in the date we got the results back). We have been in a tail spin since trying to gather information and get everything in line. We are trying to find some support within a community setting to at the moment just gather information on what this diagnosis means to our child and to our family. Thanks Kim I hope this is enough to be able to join in the group until I can get a feeling of being safe to share more. I hope you understand but in the internet world I am fairly careful on what to share until I know it is safe. Thanks Kim Welcome Kim! Please tell us where your from? I'm so glad to hear that your genetic's doctor recommended us to you! That let's us know that we are doing our part by continuing to spread awareness about mosaic Down syndrome! My name is and I'm the president of IMDSA. My husband and I have 4 kids and we live in Ohio. Two boys 12 and 8, and twin girls that are 5 years old. Adde one of the twins has mDs. Please feel free to ask any questions that you may have. We all want you to know that you are not alone in this journey! Hellard President International Mosaic Down syndrome Association (IMDSA) P.0. Box 354~ Trenton ~ OH ~ 45067 1-888-MDS-LINK ~ 1- ~ (FAX) 1- http://imdsa.org Quote Link to comment Share on other sites More sharing options...
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