Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Dear and Barbara, The good news is that the weather has cooled down so I can work with them about the heat problem. and Pete do go out in the heat but spending all day in a hot room is scary. Two years ago I fought with the system to move 's seat from the far back of the station wagon to a window seat, they fought with me for 4 days or so it was hell. I kept telling them that it was to hot for her and I drove her myself to school . I told them it could kill her but they thought I was just saying that to get her seat moved . I got letter from doctors and still they had to think of it, then I told them they would have to pay for transpotation . But why do we have to fight so hard ,I hate this . We have so many choices that we have to make . Nothing in their lifesare simply. I should not be . spend all this time on this junk. I can't change class rooms because her teacher that I spent time with has a different group of kids and they told me that it would not be good to have her in her class. I was thinking that even though they think that isn't ready to be with the normal kids (what ever that is) It was verbal agreement that she would. We have to start some where. Thank you and Barbara for taking time to write me back. Vange Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Vange, You may call for an ARC metting anytime you want one,the school must comply. Do not go alone,take a friend or another parent.My sister goes with me,she doesn't say anything but takes THE BEST notes.Have a list of the things you want,you won't get every thing,so make sure you have a few things that you are willing to do without in order to get the things you REALLY want.Also don't forget the tape recorder,put it in the middle of the table,so that nothing will be missed.This will also be made part of the IEP,so that anything that is agreed on should be done. At AShley 's ARC's it is nothing to have 10-15 other people.That used to really intimidate me,until I finally realized I AM THE EXPERT WHEN IT COMES TO THIS CHILD!!!!! One thing that I started doing that helped me (sounds silly)I started sitting at the head of the table.That way I am facing everyone at once,and they have to turn in their chair to talk to each other.My sister usually sits to my right,if I miss something, she can easily get my attention. Remember the old saying, " THE SQUEAKIE WHEEL GETS THE GREASE " ,it's true. Good Luck, Ray,Mom to PS I did have a book of parent do's and don'ts of ARC meetings,if I can find it I will let you know. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 Mel, Do you have PowerPoint? I just did a presentation for our local chapter of the UMDF on " You, your child and your child's education " . I am a school board member and former teacher. I could email the presentation to you. There is a section in it about children with medical issues as well as information on how to deal with the school system. It doesn't have to be so hard - not if everyone works together. Is the placement in writing on the IEP? They cannot move your child into a class other than what is stated on the IEP without your permission. Let me know. ML -- Lou Micheaels marilou@... Home: Fax: Pager: Reply-To: Mitoegroups Date: Mon, 4 Sep 2000 22:03:59 -0400 To: <Mitoegroups> Subject: SCHOOL DAY BLUES My Groups </mygroups> | Mito Main Page </group/Mito> | Start a new group! <http://click./1/8150/15/_/368657/_/968119294/> Dear and Barbara, The good news is that the weather has cooled down so I can work with them about the heat problem. and Pete do go out in the heat but spending all day in a hot room is scary. Two years ago I fought with the system to move 's seat from the far back of the station wagon to a window seat, they fought with me for 4 days or so it was hell. I kept telling them that it was to hot for her and I drove her myself to school . I told them it could kill her but they thought I was just saying that to get her seat moved . I got letter from doctors and still they had to think of it, then I told them they would have to pay for transpotation . But why do we have to fight so hard ,I hate this . We have so many choices that we have to make . Nothing in their lifesare simply. I should not be . spend all this time on this junk. I can't change class rooms because her teacher that I spent time with has a different group of kids and they told me that it would not be good to have her in her class. I was thinking that even though they think that isn't ready to be with the normal kids (what ever that is) It was verbal agreement that she would. We have to start some where. Thank you and Barbara for taking time to write me back. Vange Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 5, 2000 Report Share Posted September 5, 2000 My daughter also has heat issues - she can tolerate a little bit, but an 80 degree room would give her heatstroke, depending on the activity. When this school district changed the school year to begin in August and end in June, they realized they would have to accommodate her heat issues and put a computer room air conditioner ($5-10k) in her room to cool it. She also gets preferential treatment on the bus - she gets picked up last and dropped off first, although so far this year she's been close to heatstroke a couple of times when the bus took 30 minutes to get home. Thankfully, we live in Denver and the temps are going back down now quickly...she'll tolerate it went he outside tems get into the 70's Kathy Cell kgt@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 Thank you so much , The teacher and I are tring to work out thing first before we have a meeting. re:school day blues > > Vange, > You may call for an ARC metting anytime you want one,the school must > comply. > Do not go alone,take a friend or another parent.My sister goes with > me,she doesn't say anything but takes THE BEST notes.Have a list of > the things you want,you won't get every thing,so make sure you have a > few things that you are willing to do without in order to get the > things you REALLY want.Also don't forget the tape recorder,put it in > the middle of the table,so that nothing will be missed.This will also > be made part of the IEP,so that anything that is agreed on should be > done. > At AShley 's ARC's it is nothing to have 10-15 other > people.That used to really intimidate me,until I finally realized I > AM THE EXPERT WHEN IT COMES TO THIS CHILD!!!!! > One thing that I started doing that helped me (sounds silly)I started > sitting at the head of the table.That way I am facing everyone at > once,and they have to turn in their chair to talk to each other.My > sister usually sits to my right,if I miss something, she can easily > get my attention. > Remember the old saying, " THE SQUEAKIE WHEEL GETS THE GREASE " ,it's > true. > Good Luck, > Ray,Mom to > > PS I did have a book of parent do's and don'ts of ARC meetings,if I > can find it I will let you know. > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 What is ARC meeting is like IEP re:school day blues > > Vange, > You may call for an ARC metting anytime you want one,the school must > comply. > Do not go alone,take a friend or another parent.My sister goes with > me,she doesn't say anything but takes THE BEST notes.Have a list of > the things you want,you won't get every thing,so make sure you have a > few things that you are willing to do without in order to get the > things you REALLY want.Also don't forget the tape recorder,put it in > the middle of the table,so that nothing will be missed.This will also > be made part of the IEP,so that anything that is agreed on should be > done. > At AShley 's ARC's it is nothing to have 10-15 other > people.That used to really intimidate me,until I finally realized I > AM THE EXPERT WHEN IT COMES TO THIS CHILD!!!!! > One thing that I started doing that helped me (sounds silly)I started > sitting at the head of the table.That way I am facing everyone at > once,and they have to turn in their chair to talk to each other.My > sister usually sits to my right,if I miss something, she can easily > get my attention. > Remember the old saying, " THE SQUEAKIE WHEEL GETS THE GREASE " ,it's > true. > Good Luck, > Ray,Mom to > > PS I did have a book of parent do's and don'ts of ARC meetings,if I > can find it I will let you know. > > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 6, 2000 Report Share Posted September 6, 2000 Jeannine, ARC stands for Admissions and Release Committee.Anyone who is providing any service to the child should be a member of the committee,but it can also be others who know the child and who can make recomendations and help decide what service is needed.Family and friends included.The committee should reach a consensus before anything new is started or before anything is changed.If something is decided that you disagree with you need to write your objection and have it attached to the IEP. 's meetings have included people from the Ky Dept.for the Blind, Ky School for the Blind, Voc. Rehab, Deaf/Blind Project and others who have a special knowledge of her disability.These people can make recomendations for services,special equipment and let you as well as the school know of things that are available. Hope this helps. , Mom to Re: re:school day blues > > Ray wrote: > > > You may call for an ARC metting anytime you want one,the school must > > comply. > > What is an ARC meeting? > > Thanks, > Jeannine > > > > Brought to you by www.imdn.org - an on-line support group for those affected by mitochondrial disease. > Quote Link to comment Share on other sites More sharing options...
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