Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Thats to bad he is having trouble in school. However I have been dealing with CPSE for 4 years now with my daughter (not mito). I would not have signed off on the 504 as it will be hard to get it back. You can get yourself a parent addvocate and push for it again. with my daughter she has fatigue issues (looking in to having her tested for mito) they finally agreed to give her 2 times more time then normal for testing and eventually she will get a computer. the big thing is she doesn't sweat so its a medical emergency so becasue of that we have a full time aide. My friend who simply has a ADHD child was having problems with him concetrating and settling I told her to fight for a aide and she did she got a aide that takes care of her son and another child. her son went form F's to A's. I would suggest u fight to get him back on 504 plan and don't let them back u down on a aide. Also if u don't agree with any decisions being made then u stand up and say I request arbitrationa nd walk out. Then they know u r serious. there is NEVER a reason that a child with any medical history should be negativly punished and have a fun field trip taken away from him. I hope this helps and now I am fuming mad over this. I don't understand why ppl have to think they are doctors at school, isn't this what are taxes go for??????? mom to Caeden 31 mos mito myopothy >From: hilandgang@... >Reply-To: Mito >To: Mito >Subject: need suggestions/modifications...LONG vent >Date: Tue, 20 Apr 2004 12:59:43 EDT > >Hi All, > >Guess it's time for my annual grievance post. Seems like every April >something tragic goes on with my family...maybe i'll start skipping April >altogether?! For those of you who don't know me, my name is ruth and i'm >the mom to two >beautiful treasures, both of whom are mito affected. My daughter is 6 now, >and my son just turned 9...which means i've been with this group for 6 >years >now! WOW! Anyway, i digress... > >Last April, my son was diagnosed with probable mito disorder, showing up as >a >mild form of muscular dystrophy. Up until age 6 1/2 he had been fairly >symptom free. At 6 1/2, i started seeing muscle incoordination, fatigue, >and >getting allllllllll these reports from school that he was inattentive, >unfocused, >had bad handwriting, wouldn't finish work in class, etc. We went the route >of >ADHD, but the meds had no affect. Last December, i had a rude awakening as >to >his limited motor abilities during a horrible experience with a tae kwon do >test. Finally, last April i took him to the muscle clinic at Denver >childrens >where they told me the difficulty focusing, inattentiveness, etc was due to >FATIGUE! Made SOOOO much more sense, even though i really didn't want it >to be >mito...at least i had an answer that made sense. So we got him on a 504 >plan >at school for time modifications, decreased work load, even allowing the >teacher to scribe when Mitch was too tired. > >WE've kind of had the same issues this year at school, but the 504 seemed >to >be helping. Teacher has complained all year that he doesn't use his class >time. he will refuse to do the work in class, then give up a recess or >come in >early to finish it then. I thought that seemed reasonable on Mitch's part >, >and that it was a decision he was making consciously. He knew the work >needed >to be done but couldn't/wouldn't/didn't get it done when everyone else in >class >did. I thought that was what modifications were for...to allow for a >different learning style. 2 weeks ago we had a parent conference at the >end of which >the 504 team comes trooping in, all saying how they don't feel he needs the >modifications any more. I was willing to try to let him go without the >mod's, >b/c he HATES being seen as " different " . he would rather eat hot lava than >admit to being fatigued in class, or use the scribing, etc. So i signed >off on >the 504, with the proviso that IF it didn't work out that we would >re-evaluate. > > >Fast forward to yesterday. My kid come home with a note that says he has >lost his field trip (set for 5-3) because he got 6 check marks against his >name...in the past 2 weeks since conference. Of course after i took some >time to >calm down, i asked my son what had happened. he told me he was not getting >his >work done in class again and that even though he would give up his recess >to >get the work done, he still got check marks. when i asked him WHY he >didn't >get it done in class, he said " i'm too tired " . So i went to the school >today >and was promptly told by the teacher that she doesn't think he IS tired. >she >siad he tells her he doesn't know why he doesn't do the work, just that he >doesn't want to. She essentially told me my kid was lazy...said he's not >doing his >best. Okay, besides the incredible " I DON'T GET IT " factor there, i really >take offense to my kid being seen as lazy. > >Now to the meat of this very long story (sorry). Of course i need to meet >again with the 504 team...yay my favorite thing to do. Those of you with >higher >functioning kiddos, HOW in the world do you get the teachers, staff, >whomEVER >to understand the nature of this beast? I told her today that he is able >to >perform the work...INCONSISTENTLY. She didn't even respond to that. What >modifications work for your kids, especially to address the fatigue issue? >Does >ANY one else have a kid that just can't won't get started with his work?? >I >feel like i'm going crazy here.... > >ruth >mom to Mitch (9) and Lexi (6), both mito affected and my treasures _________________________________________________________________ Stop worrying about overloading your inbox - get MSN Hotmail Extra Storage! http://join.msn.com/?pgmarket=en-us&page=hotmail/es2&ST=1/go/onm00200362ave/dire\ ct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 21, 2004 Report Share Posted April 21, 2004 Thats to bad he is having trouble in school. However I have been dealing with CPSE for 4 years now with my daughter (not mito). I would not have signed off on the 504 as it will be hard to get it back. You can get yourself a parent addvocate and push for it again. with my daughter she has fatigue issues (looking in to having her tested for mito) they finally agreed to give her 2 times more time then normal for testing and eventually she will get a computer. the big thing is she doesn't sweat so its a medical emergency so becasue of that we have a full time aide. My friend who simply has a ADHD child was having problems with him concetrating and settling I told her to fight for a aide and she did she got a aide that takes care of her son and another child. her son went form F's to A's. I would suggest u fight to get him back on 504 plan and don't let them back u down on a aide. Also if u don't agree with any decisions being made then u stand up and say I request arbitrationa nd walk out. Then they know u r serious. there is NEVER a reason that a child with any medical history should be negativly punished and have a fun field trip taken away from him. I hope this helps and now I am fuming mad over this. I don't understand why ppl have to think they are doctors at school, isn't this what are taxes go for??????? mom to Caeden 31 mos mito myopothy >From: hilandgang@... >Reply-To: Mito >To: Mito >Subject: need suggestions/modifications...LONG vent >Date: Tue, 20 Apr 2004 12:59:43 EDT > >Hi All, > >Guess it's time for my annual grievance post. Seems like every April >something tragic goes on with my family...maybe i'll start skipping April >altogether?! For those of you who don't know me, my name is ruth and i'm >the mom to two >beautiful treasures, both of whom are mito affected. My daughter is 6 now, >and my son just turned 9...which means i've been with this group for 6 >years >now! WOW! Anyway, i digress... > >Last April, my son was diagnosed with probable mito disorder, showing up as >a >mild form of muscular dystrophy. Up until age 6 1/2 he had been fairly >symptom free. At 6 1/2, i started seeing muscle incoordination, fatigue, >and >getting allllllllll these reports from school that he was inattentive, >unfocused, >had bad handwriting, wouldn't finish work in class, etc. We went the route >of >ADHD, but the meds had no affect. Last December, i had a rude awakening as >to >his limited motor abilities during a horrible experience with a tae kwon do >test. Finally, last April i took him to the muscle clinic at Denver >childrens >where they told me the difficulty focusing, inattentiveness, etc was due to >FATIGUE! Made SOOOO much more sense, even though i really didn't want it >to be >mito...at least i had an answer that made sense. So we got him on a 504 >plan >at school for time modifications, decreased work load, even allowing the >teacher to scribe when Mitch was too tired. > >WE've kind of had the same issues this year at school, but the 504 seemed >to >be helping. Teacher has complained all year that he doesn't use his class >time. he will refuse to do the work in class, then give up a recess or >come in >early to finish it then. I thought that seemed reasonable on Mitch's part >, >and that it was a decision he was making consciously. He knew the work >needed >to be done but couldn't/wouldn't/didn't get it done when everyone else in >class >did. I thought that was what modifications were for...to allow for a >different learning style. 2 weeks ago we had a parent conference at the >end of which >the 504 team comes trooping in, all saying how they don't feel he needs the >modifications any more. I was willing to try to let him go without the >mod's, >b/c he HATES being seen as " different " . he would rather eat hot lava than >admit to being fatigued in class, or use the scribing, etc. So i signed >off on >the 504, with the proviso that IF it didn't work out that we would >re-evaluate. > > >Fast forward to yesterday. My kid come home with a note that says he has >lost his field trip (set for 5-3) because he got 6 check marks against his >name...in the past 2 weeks since conference. Of course after i took some >time to >calm down, i asked my son what had happened. he told me he was not getting >his >work done in class again and that even though he would give up his recess >to >get the work done, he still got check marks. when i asked him WHY he >didn't >get it done in class, he said " i'm too tired " . So i went to the school >today >and was promptly told by the teacher that she doesn't think he IS tired. >she >siad he tells her he doesn't know why he doesn't do the work, just that he >doesn't want to. She essentially told me my kid was lazy...said he's not >doing his >best. Okay, besides the incredible " I DON'T GET IT " factor there, i really >take offense to my kid being seen as lazy. > >Now to the meat of this very long story (sorry). Of course i need to meet >again with the 504 team...yay my favorite thing to do. Those of you with >higher >functioning kiddos, HOW in the world do you get the teachers, staff, >whomEVER >to understand the nature of this beast? I told her today that he is able >to >perform the work...INCONSISTENTLY. She didn't even respond to that. What >modifications work for your kids, especially to address the fatigue issue? >Does >ANY one else have a kid that just can't won't get started with his work?? >I >feel like i'm going crazy here.... > >ruth >mom to Mitch (9) and Lexi (6), both mito affected and my treasures _________________________________________________________________ Stop worrying about overloading your inbox - get MSN Hotmail Extra Storage! http://join.msn.com/?pgmarket=en-us&page=hotmail/es2&ST=1/go/onm00200362ave/dire\ ct/01/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 23, 2004 Report Share Posted April 23, 2004 Ruth, O.K. I hope I can help you in this situation. It sounds like Mitch is in the 3rd grade? I am a Mito Mom to 3, but also a third grade teacher. I can see and understand from the teachers point of view if Mitch is not working during class but rather waits until recess to do his work, that would be very frustrating in the context of the mainstream classroom for the teacher. For my own kiddos, we have trouble with the severe fatigue issues, however, their fatigue is consistent in that if they are tired, they are tired all day. That is why we attend school only half days with the older two. From the perspective of the teacher I can fully understand how she may think that he is demonstrating manipulative behaviors. I will work when I want to work kind of thing rather than when he has been asked to work, Imagine if all students did that, if he in fact is saving it to his recess times and is able to work and finish at recess time. My own son went through this as come to find out, he was trying to avoid the recess thing for several reasons, but one being he didn't feel like he could play like the other kids and still feel well. So he would not work during class, get "benched by the teacher" so he "Had" to do his work at recess. Solved the social misfit situation he felt he was in. It drove his teacher nuts. Here is something to consider from the teachers point of view as well. If your son needs to be in the classroom every recess due to lack of working, that is really a lot to expect of the teacher on a daily basis, because by law, she is intittled to a break, Most teachers will meet the need of a child as best they can, but she too needs time to use the restroom, take care of office issues and just take a break from 20 to 30 children. Could you go all day without a potty break? Could you call parents back, do your office paperwork and prepare for the class if you had a student who kept you in every recess? I think your honest answer would have to be no. Sometimes as parents we forget that our child is not the only issue going on. His teacher may be just as frustrated and feel very unsupported by you the parent and maybe even the district. If I might suggest something to you. I would call back the Team, ask that the 504 be reinstated, that an aide be assigned to your child to meet his unconventional patterns of learning in order to help better support him and his teacher. If his teacher feels that you understand a little bit about her predicament you might get a little further with her as well. I know when I as a teacher am expected rather than appreciated for the above and beyond that some children require I tend to get a little ruffled myself. I always try to remember how hard it is to do my three Mito kidos by myself at home. It is even more difficult for a person who is not Mito knowledge with 20 to 30 other children they are responsible for to do my Mito kiddo at school and meet their needs. That is why I have fought to keep their aides to support the classroom teacher. Just a thought. Don't let the district railroad you into doing what is in their best interest financially or otherwise. The way I see my role as Mito Mommy is to make sure that my child has everything he/she needs in order to be successful in the mainstream classroom. Part of that success is a teacher who is not being pushed way beyond her physical abilities to meet that need at the expense of herself or other children in the class. Special children require just that special care and attention and most teachers are willing to do what they can with in reason. To be honest, asking this teacher to allow him to be in at each reassesses to finish his work he should be doing during class, denying this teacher her break time and prep time for the rest of the class, falls outside of reasonable expectations for that teacher in my opinion. I would be happy to help you brainstorm some ideas as to what you could suggest, but I guess I am suggesting here to go a little easy on the teacher here. I hope this was of some help to your situation. The most important thing is that Mitch get a good education, and that he learn to do his best when he is feeling up to it and that there is support for him when he may not be feeling up to his best. Hugs and good luck, big hugs to you, O When the door of happiness closes, another opens, but often times we spend so much time looking at the closed door, we don't see the open door. Look for the open doors! O and crew - Kira,, and Krisalynn Mitochondrial Myopathy-MIDS Maternally Inherited Dysautonomia- NVD ( Nuro Vascular Dystrophy) and dad Enrique Visit our web page: WWW. caringbridge.org/ca/mitooggo Help support my sister in her new business at : Come and see what's NEW! http://www.youravon.com/elleenmiller Your AVON representative (Sign in passcode: ElleensAVON if you are signing in for the first time :-) Quote Link to comment Share on other sites More sharing options...
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