Guest guest Posted February 26, 2002 Report Share Posted February 26, 2002 Hello, My first grade daughter with mito is struggling with fatigue. By 1:00pm she is too exhausted to think and some days struggles just staying awake through the day. How do you deal with the fatigue without harming the child's education? My daughter is mainstreamed but on an adapted curriculum. She does Math and Reading at a Kindergarten level but participates fully in all other class activities. She really does not belong in a special education class and her team feels that this would harm her. If I take her out of school at 1:00pm, she'll miss out on the subjects that she loves (music, science, library, gym, art, computers). The biggest problem is that Math is scheduled for 2:00pm when her brain and body is about fried. However, Math is scheduled at 2:00pm because reading is scheduled in the morning. The theory is that the kids need a big break between reading and math because both are so " brain intensive " . Flipping the schedule so that Math in in the morning on some days is just as distrubing for the kids. Do I put her in special classes so that she gets reading and math back to back while her mind is still sharp? If I do this, she'll miss out on some of the fun activities that get fit in between reading and lunch time like science or social studies. There just seems to be no answer if she is to stay mainstreamed. How do you guys deal with this? Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2002 Report Share Posted February 27, 2002 Have you tried CoEnzyme Q10? It has great results with improved energy, mobility and speech. It may make some children aggressive and then the dose can be lowered to meet the individual child's needs. You should consult your doctor to see if this is right for your situation and to find out where you can get professional medical CoQ10. Good Luck! -- In Mito@y..., " supermitomom " <info@h...> wrote: > Hello, > > My first grade daughter with mito is struggling with fatigue. > > By 1:00pm she is too exhausted to think and some days struggles just > staying awake through the day. > > How do you deal with the fatigue without harming the child's > education? > > My daughter is mainstreamed but on an adapted curriculum. She does > Math and Reading at a Kindergarten level but participates fully in all > other class activities. > > She really does not belong in a special education class and her team > feels that this would harm her. > > If I take her out of school at 1:00pm, she'll miss out on the subjects > that she loves (music, science, library, gym, art, computers). The > biggest problem is that Math is scheduled for 2:00pm when her brain > and body is about fried. However, Math is scheduled at 2:00pm because > reading is scheduled in the morning. The theory is that the kids need > a big break between reading and math because both are so " brain > intensive " . Flipping the schedule so that Math in in the morning on > some days is just as distrubing for the kids. > > Do I put her in special classes so that she gets reading and math back > to back while her mind is still sharp? If I do this, she'll miss out > on some of the fun activities that get fit in between reading and > lunch time like science or social studies. > > There just seems to be no answer if she is to stay mainstreamed. > > How do you guys deal with this? > > Thanks. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 Hi, Yes, we used CoQ10, Carnitor, Vitamin C...all of that. I didn't think it helped so I stopped using it. corpflygirl wrote: Have you tried CoEnzyme Q10? It has great results with improved energy, mobility and speech. It may make some children aggressive and then the dose can be lowered to meet the individual child's needs. You should consult your doctor to see if this is right for your situation and to find out where you can get professional medical CoQ10. Good Luck! -- In Mito@y..., "supermitomom" <info@h...> wrote: > Hello, > > My first grade daughter with mito is struggling with fatigue. > > By 1:00pm she is too exhausted to think and some days struggles just > staying awake through the day. > > How do you deal with the fatigue without harming the child's > education? > > My daughter is mainstreamed but on an adapted curriculum. She does > Math and Reading at a Kindergarten level but participates fully in all > other class activities. > > She really does not belong in a special education class and her team > feels that this would harm her. > > If I take her out of school at 1:00pm, she'll miss out on the subjects > that she loves (music, science, library, gym, art, computers). The > biggest problem is that Math is scheduled for 2:00pm when her brain > and body is about fried. However, Math is scheduled at 2:00pm because > reading is scheduled in the morning. The theory is that the kids need > a big break between reading and math because both are so "brain > intensive". Flipping the schedule so that Math in in the morning on > some days is just as distrubing for the kids. > > Do I put her in special classes so that she gets reading and math back > to back while her mind is still sharp? If I do this, she'll miss out > on some of the fun activities that get fit in between reading and > lunch time like science or social studies. > > There just seems to be no answer if she is to stay mainstreamed. > > How do you guys deal with this? > > Thanks. Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 Hi- in response to your issues of fatigue in your daughter while in school... My son is also in a mainstreamed class in first grade, and the daily schedule of his class sounds very similar to your daughter's class. We have found that our son does well by going to class 2 mornings and 2 afternoons a week, and staying home on Wednesdays to rest up. We also have a tutor come to the house (provided by the school) twice a week to work one-on-one with him to help him keep up with the work. This allows him to participate in a classroom with his typical peers, while respecting his energy demands. He gets reading on the 2 mornings he's in class, and math on the 2 afternoons. Because he has some sensory issues, it allows his learning at home to be more effective than in class when he works at home with the tutor in a much less distracting environment. We've done a lot of trial and error with our son, and even tried homeschooling him ourselves for kindergarten. The current schedule we've worked out also allows him to stay later on those days he's scheduled to come home at noon if he is exhibiting a " strong " energy day. And if it is a short week due to a holiday, we simply send him in on Wednesday so that he still gets his four days. The key of course is getting the school to understand the unique need for scheduling flexibility for a child with Mitochondrial Disease. He still misses a lot of education, and our goal is to work with the school to try and design a better class schedule next year that meets his needs while not unduly affecting the rest of the class. (For example, reading in the late morning, followed by an early lunch, and then math right after lunch and recess. This allows a break in between reading and math for all the students, but doesn't space it out so much throughout the day that our son is exhausted by the late afternoon. Also, if he is having a low energy morning, we can send him in a bit late and he won't miss out on reading.) I'd love to correspond with you re: your daughter and the success (and challenges!) you're having with her education- my son is very similar to her (it sounds like) in his level of cognitive abilities. My e-mail address is Rykenzie@.... Hope this is somewhat helpful! -Debbie Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 if only our school system could get to that place of understanding... deb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 Hi Deb, Trust me, this took a lot of educating the team. Each year, I provide the team with a medical "resume" of my daughter's issues, why they exist and what we do about them. I also provide fact sheets about Mitochondial disease that I have written as well as the MDA Mitochondrial fact sheets. It also helps that Alycia has had the same aide for two years and this aide has come to know Alycia very well both in personality and health. The aide can see that Alycia's stamina level is steadily declining to the point that it is impeding her education and perhaps risking her health. She is actually the person who has got me motivated to find a solution...and fast. Go to the MDA site and look up the Mitochondrial fact sheets. It might help to have your team read this information. Thanks, Lori VisibleWorship@... wrote: if only our school system could get to that place of understanding... deb Please contact mito-owner with any problems or questions. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 I am sorry to hear that. I have read that if you are not deficient in the enzyme that you will not see the effects of the supplement. Keep searching. You will have to find what works best for your situation. Best of luck to you. Lori Downs-Hesperus Web Design wrote: Hi,Yes, we used CoQ10, Carnitor, Vitamin C...all of that. I didn't thinkit helped so I stopped using it.corpflygirl wrote:> Have you tried CoEnzyme Q10? It has great results with improved> energy, mobility and speech. It may make some children aggressive> and then the dose can be lowered to meet the individual child's> needs. You should consult your doctor to see if this is right for> your situation and to find out where you can get professional medical> CoQ10. Good Luck!>>>> -- In Mito@y..., "supermitomom" wrote:> > Hello,> >> > My first grade daughter with mito is struggling with fatigue.> >> > By 1:00pm she is too exhausted to think and some days struggles just>> > staying awake through the day.> >> > How do you deal with the fatigue without harming the child's> > education?> >> > My daughter is mainstreamed but on an adapted curriculum. She does> > Math and Reading at a Kindergarten level but participates fully in> all> > other class activities.> >> > She really does not belong in a special education class and her team>> > feels that this would harm her.> >> > If I take her out of school at 1:00pm, she'll miss out on the> subjects> > that she loves (music, science, library, gym, art, computers). The> > biggest problem is that Math is scheduled for 2:00pm when her brain> > and body is about fried. However, Math is scheduled at 2:00pm> because> > reading is scheduled in the morning. The theory is that the kids> need> > a big break between reading and math because both are so "brain> > intensive". Flipping the schedule so that Math in in the morning on>> > some days is just as distrubing for the kids.> >> > Do I put her in special classes so that she gets reading and math> back> > to back while her mind is still sharp? If I do this, she'll miss> out> > on some of the fun activities that get fit in between reading and> > lunch time like science or social studies.> >> > There just seems to be no answer if she is to stay mainstreamed.> >> > How do you guys deal with this?> >> > Thanks.>>>> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2002 Report Share Posted February 28, 2002 I am sorry to hear that. I have read that if you are not deficient in the enzyme that you will not see the effects of the supplement. Keep searching. You will have to find what works best for your situation. Best of luck to you. Lori Downs-Hesperus Web Design wrote: Hi,Yes, we used CoQ10, Carnitor, Vitamin C...all of that. I didn't thinkit helped so I stopped using it.corpflygirl wrote:> Have you tried CoEnzyme Q10? It has great results with improved> energy, mobility and speech. It may make some children aggressive> and then the dose can be lowered to meet the individual child's> needs. You should consult your doctor to see if this is right for> your situation and to find out where you can get professional medical> CoQ10. Good Luck!>>>> -- In Mito@y..., "supermitomom" wrote:> > Hello,> >> > My first grade daughter with mito is struggling with fatigue.> >> > By 1:00pm she is too exhausted to think and some days struggles just>> > staying awake through the day.> >> > How do you deal with the fatigue without harming the child's> > education?> >> > My daughter is mainstreamed but on an adapted curriculum. She does> > Math and Reading at a Kindergarten level but participates fully in> all> > other class activities.> >> > She really does not belong in a special education class and her team>> > feels that this would harm her.> >> > If I take her out of school at 1:00pm, she'll miss out on the> subjects> > that she loves (music, science, library, gym, art, computers). The> > biggest problem is that Math is scheduled for 2:00pm when her brain> > and body is about fried. However, Math is scheduled at 2:00pm> because> > reading is scheduled in the morning. The theory is that the kids> need> > a big break between reading and math because both are so "brain> > intensive". Flipping the schedule so that Math in in the morning on>> > some days is just as distrubing for the kids.> >> > Do I put her in special classes so that she gets reading and math> back> > to back while her mind is still sharp? If I do this, she'll miss> out> > on some of the fun activities that get fit in between reading and> > lunch time like science or social studies.> >> > There just seems to be no answer if she is to stay mainstreamed.> >> > How do you guys deal with this?> >> > Thanks.>>>> Quote Link to comment Share on other sites More sharing options...
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