Comments on: GSD Vs. Small School Districts http://www.starchwars.com/2007/04/gsd-vs-small-school-districts/ Glycogen Storage Disease Wed, 20 Jul 2011 15:08:47 +0000 hourly 1 http://wordpress.org/?v=3.2.1 By: Uncle Will http://www.starchwars.com/2007/04/gsd-vs-small-school-districts/comment-page-1/#comment-12 Uncle Will Fri, 13 Apr 2007 17:09:27 +0000 http://starchwars.com/control/lib/blog/2007/04/05/gsd-vs-small-school-districts/#comment-12 Sounds like you have legitimate cause for concern. It also sounds like the school district IS being adversarial. Fortunately you have some very robust federal law backing you up. I'll do more research re:Mark this weekend and I'll talk to the director of the Special Education Legal Clinic where I work on Monday. That said, I would try to foster an attitude of partnership and understanding with the School, even while asserting your rights. After all, even if you win they're still responsible for caring for your kids. Love, W Sounds like you have legitimate cause for concern. It also sounds like the school district IS being adversarial. Fortunately you have some very robust federal law backing you up. I’ll do more research re:Mark this weekend and I’ll talk to the director of the Special Education Legal Clinic where I work on Monday.

That said, I would try to foster an attitude of partnership and understanding with the School, even while asserting your rights. After all, even if you win they’re still responsible for caring for your kids.

Love,
W

]]> By: Bonnieanne http://www.starchwars.com/2007/04/gsd-vs-small-school-districts/comment-page-1/#comment-11 Bonnieanne Thu, 12 Apr 2007 15:27:06 +0000 http://starchwars.com/control/lib/blog/2007/04/05/gsd-vs-small-school-districts/#comment-11 Knowing your Four year old personally, I do not think you are over reacting. With your other boys with GSD the school now has a percentage, whether they like it or not. They need to be aware of this. He's five, so soon he will be able to take responsibilty for himself, but not just yet, for varying personality reasons. But the school needs to be aware, even if nothing is to be expected of them. It is a life or death situation for him, and they need to understand it the best that they can. I'm sure you already have a paper or something that they can hang in the class room - warning signs of low blood sugar, what needs to be done when - so that even when a substitute is there, he/she can be aware. Making sure they understand is not being pushy. It's being safe. You're not demanding that they care for him - you've sent someone when you've had to to give him cornstarch, but it IS their responsibility to keep him safe, just like it is their responsibility to keep everyother kid safe. Knowing your Four year old personally, I do not think you are over reacting. With your other boys with GSD the school now has a percentage, whether they like it or not. They need to be aware of this. He’s five, so soon he will be able to take responsibilty for himself, but not just yet, for varying personality reasons. But the school needs to be aware, even if nothing is to be expected of them. It is a life or death situation for him, and they need to understand it the best that they can. I’m sure you already have a paper or something that they can hang in the class room – warning signs of low blood sugar, what needs to be done when – so that even when a substitute is there, he/she can be aware.
Making sure they understand is not being pushy. It’s being safe. You’re not demanding that they care for him – you’ve sent someone when you’ve had to to give him cornstarch, but it IS their responsibility to keep him safe, just like it is their responsibility to keep everyother kid safe.

]]> By: Aunt Leslie http://www.starchwars.com/2007/04/gsd-vs-small-school-districts/comment-page-1/#comment-10 Aunt Leslie Mon, 09 Apr 2007 14:12:53 +0000 http://starchwars.com/control/lib/blog/2007/04/05/gsd-vs-small-school-districts/#comment-10 I want the boys to be safe at school. In my opinion the school is acting in an adversarial way and does not have the best intrest of your children in mind. It's getting better (no one is talking about getting them off of tubes or denying the need for keeping them away from sugar)but they still don't understand. I think that as a GSD mom you may be unaware of what is diffrent between how you care for your children and how mothers of typical children care for them. You watch them all the time for signs of low blood sugar. You watch the clock 24-7 for tube feedings. You watch what goes into their mouths vigilantly ALL THE TIME. What worries me is that in schools the kid who is screaming loudest gets the attention and the danger signs your boys have are silent. If two kids are fighting on the playground who would notice if one went to sleep under a tree because his bloodsugar dropped? In the busy life of a preschool teacher, will she even know if the nurse isn't there or remember to call you if a feeding is missed? Food is an everyday event, regardless of what the principal may say, and a kid eating snack with the rest doesn't make a sound. I want the boys to be safe at school. In my opinion the school is acting in an adversarial way and does not have the best intrest of your children in mind. It’s getting better (no one is talking about getting them off of tubes or denying the need for keeping them away from sugar)but they still don’t understand. I think that as a GSD mom you may be unaware of what is diffrent between how you care for your children and how mothers of typical children care for them. You watch them all the time for signs of low blood sugar. You watch the clock 24-7 for tube feedings. You watch what goes into their mouths vigilantly ALL THE TIME. What worries me is that in schools the kid who is screaming loudest gets the attention and the danger signs your boys have are silent. If two kids are fighting on the playground who would notice if one went to sleep under a tree because his bloodsugar dropped? In the busy life of a preschool teacher, will she even know if the nurse isn’t there or remember to call you if a feeding is missed? Food is an everyday event, regardless of what the principal may say, and a kid eating snack with the rest doesn’t make a sound.

]]> By: BMW http://www.starchwars.com/2007/04/gsd-vs-small-school-districts/comment-page-1/#comment-9 BMW Mon, 09 Apr 2007 04:32:15 +0000 http://starchwars.com/control/lib/blog/2007/04/05/gsd-vs-small-school-districts/#comment-9 I agree with you that the child should be taught to be independent as soon as possible. I hope that more people will share their experiences to help broaden the perspective of what would be the best approach for each individual case. I imagine each circumstance is unique based on circumstance and the flavor of GSD that the child has. Thanks for the great post. I agree with you that the child should be taught to be independent as soon as possible. I hope that more people will share their experiences to help broaden the perspective of what would be the best approach for each individual case. I imagine each circumstance is unique based on circumstance and the flavor of GSD that the child has. Thanks for the great post.

]]> By: Jen http://www.starchwars.com/2007/04/gsd-vs-small-school-districts/comment-page-1/#comment-8 Jen Sat, 07 Apr 2007 03:34:04 +0000 http://starchwars.com/control/lib/blog/2007/04/05/gsd-vs-small-school-districts/#comment-8 Please don't take this the wrong way, this is just my opinion. I do think you are being a little hard an the school system. i'm 29y/o 1b when i was in kindergarten the public school would not even allow me to attened due to the GSD so my parents sent me to a small chatholic school but the deal was ( now remember cornstarch was not yet invented) my mother had to come to my school luckly it was 2 blocks away every hour to give me my dextrose and water, for a few months till they had enough faith in me. i had a cooking timer on my desk and i set it every hour when it rang no matter what i was doing i would pour out my 6oz and drink. it was my responsibility not the teacher or the nurse..The nurse would call my mom if there was a problem and yes sometimes their were. I'm a big advocate of talking with and giving the child this responsibility yes i know he is 5. does he give himself the cs or do u. he is old enough to assit if not do it himself with supervision at first. never under estimate us. If you tell him and explain to him why things are bad for him he has to make the dicision not to eat bad foods..someone can't watch what he eats forever and u can't pass the blame on someone else plus it's not fair to the other children in the class. We unfortnatly have to accomidate ourselves into the world not the world to us.Beceause as adults we know that is not how the world is. Please don’t take this the wrong way, this is just my opinion. I do think you are being a little hard an the school system. i’m 29y/o 1b when i was in kindergarten the public school would not even allow me to attened due to the GSD so my parents sent me to a small chatholic school but the deal was ( now remember cornstarch was not yet invented) my mother had to come to my school luckly it was 2 blocks away every hour to give me my dextrose and water, for a few months till they had enough faith in me. i had a cooking timer on my desk and i set it every hour when it rang no matter what i was doing i would pour out my 6oz and drink. it was my responsibility not the teacher or the nurse..The nurse would call my mom if there was a problem and yes sometimes their were. I’m a big advocate of talking with and giving the child this responsibility yes i know he is 5. does he give himself the cs or do u. he is old enough to assit if not do it himself with supervision at first. never under estimate us. If you tell him and explain to him why things are bad for him he has to make the dicision not to eat bad foods..someone can’t watch what he eats forever and u can’t pass the blame on someone else plus it’s not fair to the other children in the class. We unfortnatly have to accomidate ourselves into the world not the world to us.Beceause as adults we know that is not how the world is.

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