Guest guest Posted May 8, 2011 Report Share Posted May 8, 2011 Darlene, I think we all beat ourselves up from time to time worrying about what we could have done different. I always worried because had and still has difficulty with her academics. But what I have learned now(she is now in 10th grade in a lifeskills class) is that she did learn things and retain them. Her teacher tells me all the time how remembers things she learned in previous years. was just tested and academically she is still around 2nd and 3rd grade. She is 17 years old and it makes me sad to hear that. But she is so with it when it comes to life and she has a great sense of humor. She is interested in so many things and she is involved in so many things. I too was resistant to the life skills class but her class is more then counting change and cooking. Both of which she will need more then any history lesson when it comes to being independent. She is learning how to speak for herself. They take many trips to local businesses to see how they run which to me is also more important. She goes once a week to Petco to work during the school day. She participates in elective classes with regular kids, chorus and now she is taking an interior decorating class which she loves. She is in the Make a wish club with all regular kids and goes to the meetings herself during lunch. They just held a car wash to raise money for a trip to the circus. There are also mentors which come into the class to do things with the kids and included them in activities. After school I have her involved with a group called Pathways for exceptional children. She is in a program that teaches job skills. She is also now in a Rock Band with some of the kids in high school that play instruments. She sings not well but she loves it. She also does bowling through this group. j The life skills class is in our high school in town the same school her brother and sister went to. I would not let anyone bully me or talk to me like that. I have never felt intimidated in any of her iep meetings. I know what I wanted for her and never really got a hard time. You know your daughter and what you want for her. Just let them know that. It took a long time for me to finally be happy with her schooling. I know she would not have done well in regular classes for academics. Sorry this is so long. Here is the web site for pathways. If you contact the president her name is Melinda Jennis she is wonderful and very knowledgeable about IEPs and getting service for kids. www.pathwayskids.org Jeanne Re: Re: speech issues Eleni - I think - (and this is MY OPINION) - that what matters MOST in our child's ognitive ability is how YOU treat your child and what YOUR expectations are I was just insulted by the Special Education Administrator during 's EP - she told me " What do you think your daughter is getting out of Science nd Social Studies (the two 'typical' classes she is included in) - I was LOORED!! I was at a loss for words and now that I have time to process it nd can articulate it - I will tell her and anyone else. has been in he Science Fair for three years and she participates and completes every ctivity that the rest of the class does in Social Studies. She goes with s on vacations to our National Parks and learns about the Liberty Bell, Ben ranklin, Anaheim, and burg. We are going to see the Alamo this ummer and she will learn about that - so WHAT DO I THINK SHE IS GETTING OUT F SCIENCE AND SOCIAL STUDIES - * " AN EDUCATION* " - I wish I had the presense f mind to say this while I was in that meeting - but I have a follow-up eeting in 3 weeks and I WILL tell her. I did not do everything right - I was wrong in so many ways and is aying for it now - I should have worried about her speech when she was not alking at 3 - My son did not talk until 4 and I assumed that would peak like - What I did not know is once started talking, he ever stopped and did not have a chance to practice her sounds ecause was ALWAYS talking. did not speak until 2nd grade so he teachers assumed she was MR and NEVER taught her anything - they did not est her until 2nd grade!! I should have done something - I don't know what should have done - but I should have been trying to elicit speech from er. Now, her speech is not perfect but she gets her point across... She ost two years of school and she is two years behind - and they want to emove her from her included class (AGAIN) and put her in Life Skills to earn to count change, cook and tie her shoes - Well guess what she already nows how to tie her shoes, and I am teaching her how to cook and I will each her how to count change. Sorry, I went on a rant - I am feeling the pressure as my meeting is drawing ear and I MUST keep in her neighborhood school (with her friends) - will not remove her and isolate her. Darlene n Fri, May 6, 2011 at 10:50 PM, hvarvaras wrote: > I get what your saying. But, then is it safe to say That it doesn't make a difference either if The child has 100% trisomy 21 or mosaic as far As cognitive ability? That some kids who have Mosaic can have a lower iq than kids with DS? Is it all really based on how the genes expressed Themselves and not so much the label or percentages? Eleni > > > > > > > > > > > > I took Isabella today for another speech evaluation. I have not > > been thrilled > > > > > > with the speech therapy she has been getting at Children's > > Hospital. I took her > > > > > > to a private practice and this women spent about 45 minutes with > > Isabella and > > > > > > hit the nail right on the head. She saw what I have been trying to > > convey to > > > > > > her other therapist for a few years. She said Belle has a split > > speech. She > > > > > > talks very clearly and completely typical of that of a four year > > old when > > > > > > playing with her toys. The problem comes in when people ask her > > questions or > > > > > > she tries to tell a person a story she has great difficulty with > > word > > > > > > retrieval. She felt very confident that with the appropriate > > speech therapy > > > > > > Belle problems can be corrected. I honestly left there and just > > felt so > > > > > > thankful to God that I had met her. I will let all of you know > > more when I have > > > > > > the written evaluation in hand. > > > > > > > > > > > > > > > > > > Sue > > > > > > Isabella 4 years mds and xxx > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2011 Report Share Posted May 8, 2011 They tried to move to the High School the last few months of 8th grade. I told them that I didn't want her to miss the activities of 8th grade and she would be upset at leaving before she knew she should. She ended up finishing the middle school. It was because the middle school didn't have a life skills class and the academices were hard for her causing her to act out. j I agree with what you said about grammer school. It was easier to keep her there, we actually had her repeat 5th grade instead of moving to the middle school so she could mature a little more. Worked out great for her. You live in Pennsylvania right. I live in New Jersey. Jeanne Re: Re: speech issues > > Eleni - > I think - (and this is MY OPINION) - that what matters MOST in our child's > ognitive ability is how YOU treat your child and what YOUR expectations are > I was just insulted by the Special Education Administrator during 's > EP - she told me " What do you think your daughter is getting out of Science > nd Social Studies (the two 'typical' classes she is included in) - I was > LOORED!! I was at a loss for words and now that I have time to process it > nd can articulate it - I will tell her and anyone else. has been in > he Science Fair for three years and she participates and completes every > ctivity that the rest of the class does in Social Studies. She goes with > s on vacations to our National Parks and learns about the Liberty Bell, Ben > ranklin, Anaheim, and burg. We are going to see the Alamo this > ummer and she will learn about that - so WHAT DO I THINK SHE IS GETTING OUT > F SCIENCE AND SOCIAL STUDIES - * " AN EDUCATION* " - I wish I had the presense > f mind to say this while I was in that meeting - but I have a follow-up > eeting in 3 weeks and I WILL tell her. > I did not do everything right - I was wrong in so many ways and is > aying for it now - I should have worried about her speech when she was not > alking at 3 - My son did not talk until 4 and I assumed that would > peak like - What I did not know is once started talking, he > ever stopped and did not have a chance to practice her sounds > ecause was ALWAYS talking. did not speak until 2nd grade so > he teachers assumed she was MR and NEVER taught her anything - they did not > est her until 2nd grade!! I should have done something - I don't know what > should have done - but I should have been trying to elicit speech from > er. Now, her speech is not perfect but she gets her point across... She > ost two years of school and she is two years behind - and they want to > emove her from her included class (AGAIN) and put her in Life Skills to > earn to count change, cook and tie her shoes - Well guess what she already > nows how to tie her shoes, and I am teaching her how to cook and I will > each her how to count change. > Sorry, I went on a rant - I am feeling the pressure as my meeting is > drawing > ear and I MUST keep in her neighborhood school (with her friends) - > will not remove her and isolate her. > Darlene > > n Fri, May 6, 2011 at 10:50 PM, hvarvaras wrote: > > > > I get what your saying. But, then is it safe to say > That it doesn't make a difference either if > The child has 100% trisomy 21 or mosaic as far > As cognitive ability? That some kids who have > Mosaic can have a lower iq than kids with DS? > Is it all really based on how the genes expressed > Themselves and not so much the label or percentages? > > Eleni > > > > > > > > > > > > > > > > I took Isabella today for another speech evaluation. I have not > > > been thrilled > > > > > > > with the speech therapy she has been getting at Children's > > > Hospital. I took her > > > > > > > to a private practice and this women spent about 45 minutes > with > > > Isabella and > > > > > > > hit the nail right on the head. She saw what I have been trying > to > > > convey to > > > > > > > her other therapist for a few years. She said Belle has a split > > > speech. She > > > > > > > talks very clearly and completely typical of that of a four > year > > > old when > > > > > > > playing with her toys. The problem comes in when people ask her > > > questions or > > > > > > > she tries to tell a person a story she has great difficulty > with > > > word > > > > > > > retrieval. She felt very confident that with the appropriate > > > speech therapy > > > > > > > Belle problems can be corrected. I honestly left there and just > > > felt so > > > > > > > thankful to God that I had met her. I will let all of you know > > > more when I have > > > > > > > the written evaluation in hand. > > > > > > > > > > > > > > > > > > > > > Sue > > > > > > > Isabella 4 years mds and xxx > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 8, 2011 Report Share Posted May 8, 2011 Jeanne - Happy Mother's Day to you too!! Darlene P. S. - next summer I will have ulcers thinking about Middle School vs retention - but that is NEXT year - off to church ;-) > > > > I also couldn't decide whether to hold her back or not. For the same reason > the kids were the ones she was with since kindergarten. The only thing was > that in my town there are 5 elementary schools that would all go into the > middle school. So there would be alot more kids she didn't know no matter > when she went. Middle school here is 6,7, and 8th. Middle school for her was > not that great. They had her in a special ed class but the work was still > too difficult for her and there were alot of behavior problems. High school > has been great. She loves it. > > Happy Mothers Day! > > > Jeanne > > Re: Re: speech issues > > > > > > Eleni - > > > I think - (and this is MY OPINION) - that what matters MOST in our > > child's > > > ognitive ability is how YOU treat your child and what YOUR expectations > > are > > > I was just insulted by the Special Education Administrator during > > 's > > > EP - she told me " What do you think your daughter is getting out of > > Science > > > nd Social Studies (the two 'typical' classes she is included in) - I > was > > > LOORED!! I was at a loss for words and now that I have time to process > it > > > nd can articulate it - I will tell her and anyone else. has been > > in > > > he Science Fair for three years and she participates and completes > every > > > ctivity that the rest of the class does in Social Studies. She goes > with > > > s on vacations to our National Parks and learns about the Liberty Bell, > > Ben > > > ranklin, Anaheim, and burg. We are going to see the Alamo this > > > ummer and she will learn about that - so WHAT DO I THINK SHE IS GETTING > > OUT > > > F SCIENCE AND SOCIAL STUDIES - * " AN EDUCATION* " - I wish I had the > > presense > > > f mind to say this while I was in that meeting - but I have a follow-up > > > eeting in 3 weeks and I WILL tell her. > > > I did not do everything right - I was wrong in so many ways and > is > > > aying for it now - I should have worried about her speech when she was > > not > > > alking at 3 - My son did not talk until 4 and I assumed that > would > > > peak like - What I did not know is once started talking, he > > > ever stopped and did not have a chance to practice her sounds > > > ecause was ALWAYS talking. did not speak until 2nd grade > so > > > he teachers assumed she was MR and NEVER taught her anything - they did > > not > > > est her until 2nd grade!! I should have done something - I don't know > > what > > > should have done - but I should have been trying to elicit speech from > > > er. Now, her speech is not perfect but she gets her point across... She > > > ost two years of school and she is two years behind - and they want to > > > emove her from her included class (AGAIN) and put her in Life Skills to > > > earn to count change, cook and tie her shoes - Well guess what she > > already > > > nows how to tie her shoes, and I am teaching her how to cook and I will > > > each her how to count change. > > > Sorry, I went on a rant - I am feeling the pressure as my meeting is > > > drawing > > > ear and I MUST keep in her neighborhood school (with her > friends) > > - > > > will not remove her and isolate her. > > > Darlene > > > > > > n Fri, May 6, 2011 at 10:50 PM, hvarvaras > > wrote: > > > > > > > > > > I get what your saying. But, then is it safe to say > > > That it doesn't make a difference either if > > > The child has 100% trisomy 21 or mosaic as far > > > As cognitive ability? That some kids who have > > > Mosaic can have a lower iq than kids with DS? > > > Is it all really based on how the genes expressed > > > Themselves and not so much the label or percentages? > > > > > > Eleni > > > > > > > > > > > > > > > > > > > > > > > > I took Isabella today for another speech evaluation. I have > > not > > > > > been thrilled > > > > > > > > > with the speech therapy she has been getting at Children's > > > > > Hospital. I took her > > > > > > > > > to a private practice and this women spent about 45 minutes > > > with > > > > > Isabella and > > > > > > > > > hit the nail right on the head. She saw what I have been > > trying > > > to > > > > > convey to > > > > > > > > > her other therapist for a few years. She said Belle has a > > split > > > > > speech. She > > > > > > > > > talks very clearly and completely typical of that of a four > > > year > > > > > old when > > > > > > > > > playing with her toys. The problem comes in when people ask > > her > > > > > questions or > > > > > > > > > she tries to tell a person a story she has great difficulty > > > with > > > > > word > > > > > > > > > retrieval. She felt very confident that with the > appropriate > > > > > speech therapy > > > > > > > > > Belle problems can be corrected. I honestly left there and > > just > > > > > felt so > > > > > > > > > thankful to God that I had met her. I will let all of you > > know > > > > > more when I have > > > > > > > > > the written evaluation in hand. > > > > > > > > > > > > > > > > > > > > > > > > > > > Sue > > > > > > > > > Isabella 4 years mds and xxx > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 9, 2011 Report Share Posted May 9, 2011 Aisha, Happy Mothers Day to you also. You have said what I think all the time. It doesn't matter to me what my daughters percentage is. I stopped thinking about it along time ago. She is happy and she amazes me everyday. She is so with it when it comes to life and she is funny and has a sense of humor. j Jeanne Re: speech issues Unfortunately, research proves this is incorrect. Research shows that individuals with MDS have an avergae of 30 points higher IQ than those with trisomy 21 DS. This is probably due to the amounts of trisomic cells in the brain. That said, there is no way to tell (other than time)if the trisomic cells in your child have settled in the brain moreso than other parts of the body. BUT doing a skin cell test along with a blood cell test will give you a general idea of where your child stands. I have high expectations for my child, not because he has MDS, but because he is my child. I had these high expectations from birth when he was misdiagnosed with Trisomy 21. My expectations really did not change for him when he was rediagnosed with mosaicism. I still have the same general expectations. It was crucial for treating my child's down syndrome to know exactly which type of Down syndrome he has. I think some people are still wondering and waivering about this, or they are simply stating it does not matter. I beg to differ that it does matter. Why? Because at the last conference in 2009, Dr Roper explained how they were discovering differences in the trisomic cell versus the cell without trisomy; he found there were significant differences in the neural crest of the cells. So, why would this matter? Because if all the cells do not act the same, then you have distinctly different conditions. One neural cell acts one way, and the other acts the other way. When one has mosaicism, one has cells actiing both ways. This could be consequential or this could be beneficial. Researchers are uncovering much more information about these differences which wil inevitably lead to different knowledge and different treatments along the way. Like I said before, had I known that my son had MDS for the first 3 and a half years of his life, then the doctors would not have been *waiting* that whole time for him to *catch up* on his speech; speech delays are common with Trisomy 21 and not so much with MDS or other forms of DS. I often use this example when explaining why it is very important to be diagnosed with any medical condition correctly: If you are diagnosed with a heart condition...let's say a AV defect. You certainly would not want doctors to treat you for Tetralogy of Fallot or Myocardial Infarction, would you? You would be mistreated, if that were the case. In addition, you would not want your heart specialist to say, " It does not matter. All heart conditions are the same. " <--- (Because) that is not true either. You would seriously be in big trouble then. Even though there are many similarities in all forms of Down syndrome, the hard cold facts are they are the same. No one should ever say that they are. I think the IMDSA was created because there needed to be more information about this rare form of down syndrome (mosaicism) and we were not getting enough of the facts. Whether anyone wants to admit it or not, our kids with MDS are not typical kids with Down syndrome. We are more alike than different, but there is a difference. And we need to learn all about those differences...as much as we can. This is why the IMDSA holds these research and awareness conferences because researchers are actively discovering ways we are similar and what is really different about our mosaicism. With better information, we can be more effectively treated for our condition. Without this *awareness* and vital *research* on the differences and similarities, our kids will continue to mislabeled and mistreated. I do not know about the rest of this group, but I do not want my child mislabeled or mistreated any more than he has already been mislabeled and mistreated. I am not one for labels in the first place, but now that my son has a *label*, I want to know as much as I can about it so I can help him overcome any obstacles in his way. I think we all want this for all children. Can you imagine where my child would be (at almost 8 years-old) if doctors and speech therapists were still *waiting* on his speech delays to improve? I can. We would be in a HUGE mess, worse than where we already are from waiting the first time. Research and Awareness of Mosaic Down Syndrome is important. TenEyck > > > > > > > > > > > > > > I took Isabella today for another speech evaluation. I have not > > > been thrilled > > > > > > > with the speech therapy she has been getting at Children's > > > Hospital. I took her > > > > > > > to a private practice and this women spent about 45 minutes with > > > Isabella and > > > > > > > hit the nail right on the head. She saw what I have been trying to > > > convey to > > > > > > > her other therapist for a few years. She said Belle has a split > > > speech. She > > > > > > > talks very clearly and completely typical of that of a four year > > > old when > > > > > > > playing with her toys. The problem comes in when people ask her > > > questions or > > > > > > > she tries to tell a person a story she has great difficulty with > > > word > > > > > > > retrieval. She felt very confident that with the appropriate > > > speech therapy > > > > > > > Belle problems can be corrected. I honestly left there and just > > > felt so > > > > > > > thankful to God that I had met her. I will let all of you know > > > more when I have > > > > > > > the written evaluation in hand. > > > > > > > > > > > > > > > > > > > > > Sue > > > > > > > Isabella 4 years mds and xxx > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
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