Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 Have you tried www.SuperDuperCatalog.com <http://www.superdupercatalog.com/>?? Darlene > Hi Everybody, > > I just e-mailed Kristy about this but I thought I would ask all of you > since many of your children are older than Vinny (11 months on the > 9th) I'm looking for bean/sand bags for Vinny to play with. We've > been having problems with transfering from one hand to the other but > when he was at his OT evaluatiion he picked up the bags(that were very > heavy) and transfered them from one hand to the other with no problem > (making me look like a liar). The therapist thought because it was > heavy he was able to do it because of his low muscle tone(which I still > don't get, the kid is stronger that his 5 yr old brother)some how he > realized the toy was in his had. They say that if a toy is light it > doesn't regester that their holding it, which baffles me because he > plys with toys all the time. Do you have and suggestions for me? By > the way, I don't want to make them, I don't have the time or the > patience! > On another note, while he was at this OT evaluation the therapist told > me that she thought he would have a lifetime problem of not being able > to let go of things on que. She said that it would not register in his > brain fast enough and he was going to be delayed. Let me just say that > this woman was very assertive with my baby and there were a few times > that I wanted to lunge(I hope I spelled that right) because she was > being so rough with Vinny, she even left a few red marks on him. > Through the past 10 months I've notice that everything that these > idiots have said about my son has been VERY false so I was wondering if > anybody has every heard of the diagnosis. > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 5, 2008 Report Share Posted December 5, 2008 The answer to your question.... ARE YOU KIDDING ME???????? This is stupid and if I were you (especially after the red marks) I would see if you could find another therapist. I know this is not an easy feat, but obviously this therapist doesn't have a clue about MDS, Ds or disabilities for that matter. GRRRR..... sorry.... I am mad right along with you...... Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org http://www.mosaicmoments.today.com Subject: Bean Bags To: MosaicDS Date: Friday, December 5, 2008, 11:59 AM Hi Everybody, I just e-mailed Kristy about this but I thought I would ask all of you since many of your children are older than Vinny (11 months on the 9th) I'm looking for bean/sand bags for Vinny to play with. We've been having problems with transfering from one hand to the other but when he was at his OT evaluatiion he picked up the bags(that were very heavy) and transfered them from one hand to the other with no problem (making me look like a liar). The therapist thought because it was heavy he was able to do it because of his low muscle tone(which I still don't get, the kid is stronger that his 5 yr old brother)some how he realized the toy was in his had. They say that if a toy is light it doesn't regester that their holding it, which baffles me because he plys with toys all the time. Do you have and suggestions for me? By the way, I don't want to make them, I don't have the time or the patience! On another note, while he was at this OT evaluation the therapist told me that she thought he would have a lifetime problem of not being able to let go of things on que. She said that it would not register in his brain fast enough and he was going to be delayed. Let me just say that this woman was very assertive with my baby and there were a few times that I wanted to lunge(I hope I spelled that right) because she was being so rough with Vinny, she even left a few red marks on him. Through the past 10 months I've notice that everything that these idiots have said about my son has been VERY false so I was wondering if anybody has every heard of the diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2008 Report Share Posted December 6, 2008 Hi , Kristy is right! You need a new therapist. As far as the heavy bags of beans, rice etc... That is for a child like my son who has SID. They have a hard time registering things because of SID. Everything that they do comes in scrambled and it takes their brain longer to process things. And this is not for ever for a child that has SID. can now transition easily without heavy bean bags, and knows when to let go now too! He just turned 6. YOU CAN " T FIX STUPID! From: MosaicDS [mailto:MosaicDS ] On Behalf Of Kristy Colvin Sent: Friday, December 05, 2008 1:28 PM To: MosaicDS Subject: Re: Bean Bags The answer to your question.... ARE YOU KIDDING ME???????? This is stupid and if I were you (especially after the red marks) I would see if you could find another therapist. I know this is not an easy feat, but obviously this therapist doesn't have a clue about MDS, Ds or disabilities for that matter. GRRRR..... sorry.... I am mad right along with you...... Kristy Colvin IMDSA President ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~ International Mosaic Down Syndrome Association PH: Toll Free: 1-888-MDS-LINK http://www.imdsa.org http://www.mosaicmoments.today.com From: gseda217 <gseda217@... <mailto:gseda217%40comcast.net> > Subject: Bean Bags To: MosaicDS <mailto:MosaicDS%40yahoogroups.com> Date: Friday, December 5, 2008, 11:59 AM Hi Everybody, I just e-mailed Kristy about this but I thought I would ask all of you since many of your children are older than Vinny (11 months on the 9th) I'm looking for bean/sand bags for Vinny to play with. We've been having problems with transfering from one hand to the other but when he was at his OT evaluatiion he picked up the bags(that were very heavy) and transfered them from one hand to the other with no problem (making me look like a liar). The therapist thought because it was heavy he was able to do it because of his low muscle tone(which I still don't get, the kid is stronger that his 5 yr old brother)some how he realized the toy was in his had. They say that if a toy is light it doesn't regester that their holding it, which baffles me because he plys with toys all the time. Do you have and suggestions for me? By the way, I don't want to make them, I don't have the time or the patience! On another note, while he was at this OT evaluation the therapist told me that she thought he would have a lifetime problem of not being able to let go of things on que. She said that it would not register in his brain fast enough and he was going to be delayed. Let me just say that this woman was very assertive with my baby and there were a few times that I wanted to lunge(I hope I spelled that right) because she was being so rough with Vinny, she even left a few red marks on him. Through the past 10 months I've notice that everything that these idiots have said about my son has been VERY false so I was wondering if anybody has every heard of the diagnosis. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2008 Report Share Posted December 6, 2008 Your story brought back an unpleasant memory for me! Zoe's OT in the spring was more aggressive than I was comfortable with. I also found red marks left from some ball work she was doing. Then my nanny was present at one session and told me that she jerked Zoe too hard on the ball and scared her. Which of course scared me b/c they are too young at this age to know if there is any instability in the cervical spine yet. It made me concerned that this OT wasn't aware of those precautions. I took action right away and found a new OT. She is wonderful- best decision. Remember to follow your instincts b/c you are Vinny's best advocate! Suzanne mom to Zoe (16 mo MDS) > > > > > > Subject: Bean Bags > To: MosaicDS > Date: Friday, December 5, 2008, 11:59 AM > > > > > > > Hi Everybody, > > I just e-mailed Kristy about this but I thought I would ask all of you > since many of your children are older than Vinny (11 months on the > 9th) I'm looking for bean/sand bags for Vinny to play with. We've > been having problems with transfering from one hand to the other but > when he was at his OT evaluatiion he picked up the bags(that were very > heavy) and transfered them from one hand to the other with no problem > (making me look like a liar). The therapist thought because it was > heavy he was able to do it because of his low muscle tone(which I still > don't get, the kid is stronger that his 5 yr old brother)some how he > realized the toy was in his had. They say that if a toy is light it > doesn't regester that their holding it, which baffles me because he > plys with toys all the time. Do you have and suggestions for me? By > the way, I don't want to make them, I don't have the time or the > patience! > On another note, while he was at this OT evaluation the therapist told > me that she thought he would have a lifetime problem of not being able > to let go of things on que. She said that it would not register in his > brain fast enough and he was going to be delayed. Let me just say that > this woman was very assertive with my baby and there were a few times > that I wanted to lunge(I hope I spelled that right) because she was > being so rough with Vinny, she even left a few red marks on him. > Through the past 10 months I've notice that everything that these > idiots have said about my son has been VERY false so I was wondering if > anybody has every heard of the diagnosis. > > > > > > > > > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2008 Report Share Posted December 6, 2008 Dear , Some people (therapists) just assume that with a certain diagnosis comes a certain set a characteristics. They then conduct their therapy with a " tunnel vision approach " so to speak. This, in my opinion, is very dangerous. It just does not give our children a chance at their own success. We recently relocated to a new area and had to find a new speech therapist. The first one we went to, was just terrible. She said things like " these kids can be that way " and such. She did not care to be educated on the details of MDS and now that I think about it again, seemed a bit rough as well. When we informed her of our last speech therapists both suspecting Apraxia, her comment was, " do you think so..you don't think it's just cognitive? There is enough people in this world that will stereo type our children and treat them a certain way just because of their diagnosis; we certainly do not need to have the people that are supposed to be teaching them, nurturing them, assisting them in being everything they aspire to be, to ALSO be treating them that way! Sorry you have to go through this L (mom to Aiden) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 6, 2008 Report Share Posted December 6, 2008 For 5 years, we kept getting a wrong diagnosis of " developmental delay " because the doctors kept writing simply " Down Syndrome " as a primary diagnosis on my son's records, which in itself was not true. Every doctor or therapist who saw my son would just reply to me that he was developmentally delayed in his speech due to the DS when I questioned his speech patterns. When I would remind them all that he did not have Trisomy 21, but rather he has MDS, they would just look at me dumbfounded. Many asked what MDS was. One doctor even said what is 50% when I said he has MDS 50%. Finally, I did enough research on speech developmental delays and other speech problems that I realized my son was not progressing in an orderly sequence with speech. Armed with that information, I trotted to the doctor to discuss this and that is when we started getting a correct diagnosis of Apraxia of Speech. Point is, people, therapists, and doctors will label your child based on wrong conceptions. When everyone, including " myself and my own family " thought my son had Trisomy 21,the diagnosis and comments were all wrong in compliance with that. Now that he has a MDS diagnosis, the tables are turned. Now with the Apraxia diagnosis, they no longer think he is cognitively impaired because with Apraxia, there is rarely any cognitive impairment at all. Usually kids with Apraxia are really smart. As far as th " rough therapist " , I think I would have mentioned, as soon as I saw the red marks or the therapist begin to be too rough either one, to the therapist my observations. Of course, I am very blunt and outspoken anyways, but I would have cared less what any therapist would have said to me or thought for me standing up for my child. I probably would have said something like, " You're being too rough with Charlie Hart and we do not play that rough. There are red marks on his arms. " If it persisted past that, then I would have picked up my son and said, " I think we need to go because this is a little rough for my tastes. " I would have mentioned at the front desk that we are leaving because I felt the therapist was out of line. > > Dear , > > Some people (therapists) just assume that with a certain diagnosis comes a > certain set a characteristics. They then conduct their therapy with a > " tunnel vision approach " so to speak. This, in my opinion, is very > dangerous. It just does not give our children a chance at their own > success. We recently relocated to a new area and had to find a new speech > therapist. The first one we went to, was just terrible. She said things > like " these kids can be that way " and such. She did not care to be educated > on the details of MDS and now that I think about it again, seemed a bit > rough as well. When we informed her of our last speech therapists both > suspecting Apraxia, her comment was, " do you think so..you don't think it's > just cognitive? There is enough people in this world that will stereo type > our children and treat them a certain way just because of their diagnosis; > we certainly do not need to have the people that are supposed to be teaching > them, nurturing them, assisting them in being everything they aspire to be, > to ALSO be treating them that way! Sorry you have to go through this L > > (mom to Aiden) > > > > 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.