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So, I'm just wondering if sometime someone could posta copy of these

Papers of which you speak? The Paper of Restriction and '504'.

We don't have these things in place in Australia, but I'm working on

it. LOL

BTW- Bayly's OT recommended that he use textas instead of pencils for

school, because he doesn't have to press as hard to colour-in. That

works well, when it works...last year in Early Starters he had a relief

teacher who has written in his book, scolding him for not using pencils!

Good idea for ALL teachers to be aware of the child's needs, at all

times, right?! He's going into Kindergaretn this year. Our kids are

all on summer holidays at the moment.

Jo

Bayly, 5, extended oligo

>

> Go to the School Counselor and let her know what is going on. Contact

the Dr > for a Paper of Restriction for P.E. at least for a time

being. I would > suggest instead of P.E. have your child do Health

reports for the grade.

> Ask the Counselor about the 504 plan and you want to have a

meeting with > all Teacher's and Staff who is in contact with your

child. If you need more > help please feel free to ask.

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A little info on Section 504 of the rehabilitation act:

http://www.schwablearning.org/articles.aspx?r=777

I would assume a paper might be a prescription or note written by the doctor

or physical therapist to officialy declare that the child needs restrictive

PE.

In my case, I had doctors notes for awhile, than eventualy it was

permanently added to my IEP (Individualized Educational Plan). Basicaly all

of these things had to come into play because of discrimination against

people with disabilities. First. most were denied education,

institutionalized and such.. than as more rights were fought for, these laws

came into play to get kids with special needs 'mainstreamed' in with kids

without special needs but still allow them to have the accomodations they

need to put them on equal ground with all other kids. Complicated.. yes...

lol...

A little about IEP's : http://www.schwablearning.org/articles.aspx?r=73

Someone can have section 504 or an IEP used for their child but most kids

with JRA only are not really elgible for a IEP or do not need that sort of

intensive plan. 504 is better for kids who need some accomodation though

maybe not as extensive as what an IEP may cover. IEP's mostly cover kids

with learning, mental disabilities or who have both physical and mental

impairments. You can get covered under OHI as I was which means Other Health

Impaired. The reason I ended up with an IEP is because my needs were not met

early on in school and I ended up being left behind although that wasn't

very obvious. It was something we didn't find out for a long time. Long

story but in the end, the IEP ended up being what I needed due to the

unusual circumstances in my case.

Anyways, hope these links and tidbits of info help you understand a little

more about the craziness about special education in the US.

Izzie

On Jan 6, 2008 10:47 PM, Jo & Grant <joking70@...> wrote:

> So, I'm just wondering if sometime someone could posta copy of these

> Papers of which you speak? The Paper of Restriction and '504'.

> We don't have these things in place in Australia, but I'm working on

> it. LOL

>

> BTW- Bayly's OT recommended that he use textas instead of pencils for

> school, because he doesn't have to press as hard to colour-in. That

> works well, when it works...last year in Early Starters he had a relief

> teacher who has written in his book, scolding him for not using pencils!

>

> Good idea for ALL teachers to be aware of the child's needs, at all

> times, right?! He's going into Kindergaretn this year. Our kids are

> all on summer holidays at the moment.

>

> Jo

> Bayly, 5, extended oligo

>

>

> >

> > Go to the School Counselor and let her know what is going on. Contact

> the Dr > for a Paper of Restriction for P.E. at least for a time

> being. I would > suggest instead of P.E. have your child do Health

> reports for the grade.

> > Ask the Counselor about the 504 plan and you want to have a

> meeting with > all Teacher's and Staff who is in contact with your

> child. If you need more > help please feel free to ask.

>

>

>

--

" Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI-

Silver and Cold).

my Flight in life is a metamorphosis of growth and this flutter of wings is

within me awaiting to find a space to find it's flow...

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Jo,

I find it disturbing that there are no laws in place protecting the children for

504 and IEP's and the schools - it certainly makes it easier on the parent and

the child by affording specific rights. I know Issadora gave you a website.

Another website (searchable) I have found quite helpful is: www.wrightslaw.com

Another resource is a previous edition of Kgat:

http://www.arthritis.org/media/JA/FTP/KGAT/2003/KGAT_JanFeb03.pdf

The have an article on 504 aimed at kids with arthritis.

Hope this helps. I just don't get it when teachers aren't helpful...these kids

have enough they have to overcome. I guess you will have to be a pioneer here.

BTW - what are textas?

Hope things get worked out for Bayley's kindergarten as this is such an

important and (should be) fun time for little ones.

(, 17, poly, cvid, migraines)

Jo & Grant <joking70@...> wrote: So, I'm

just wondering if sometime someone could posta copy of these

Papers of which you speak? The Paper of Restriction and '504'.

We don't have these things in place in Australia, but I'm working on

it. LOL

BTW- Bayly's OT recommended that he use textas instead of pencils for

school, because he doesn't have to press as hard to colour-in. That

works well, when it works...last year in Early Starters he had a relief

teacher who has written in his book, scolding him for not using pencils!

Good idea for ALL teachers to be aware of the child's needs, at all

times, right?! He's going into Kindergaretn this year. Our kids are

all on summer holidays at the moment.

Jo

Bayly, 5, extended oligo

>

> Go to the School Counselor and let her know what is going on. Contact

the Dr > for a Paper of Restriction for P.E. at least for a time

being. I would > suggest instead of P.E. have your child do Health

reports for the grade.

> Ask the Counselor about the 504 plan and you want to have a

meeting with > all Teacher's and Staff who is in contact with your

child. If you need more > help please feel free to ask.

---------------------------------

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  • 2 months later...
Guest guest

my son has letters form his dr. stating what he has and that he is to be

dismissed from school up to three days at a time depending on how sever the

episode is. if it gets to bad for you. check into a 504 for your child this will

protect the child from your 10 day limit on missing school and school work.

this form is very hard to get in the upper grades so if you need one it best to

start soon as possible, these kids are considered cronicly ill children even

though they are in great health between episodes. it hard for people to

understand an invisible illness. and the schools often like to pretend there is

no

such form but it is real. even if you have to go to the school board and get

the form. if our kids had migraines the form is easy to get because everyone

knows what a migraine is. so good luck protect protect protect your childs

furture.

**************

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Guest guest

my son has letters form his dr. stating what he has and that he is to be

dismissed from school up to three days at a time depending on how sever the

episode is. if it gets to bad for you. check into a 504 for your child this will

protect the child from your 10 day limit on missing school and school work.

this form is very hard to get in the upper grades so if you need one it best to

start soon as possible, these kids are considered cronicly ill children even

though they are in great health between episodes. it hard for people to

understand an invisible illness. and the schools often like to pretend there is

no

such form but it is real. even if you have to go to the school board and get

the form. if our kids had migraines the form is easy to get because everyone

knows what a migraine is. so good luck protect protect protect your childs

furture.

**************

It's Tax Time! Get tips, forms, and advice on AOL Money & amp;

Finance.

(http://money.aol.com/tax?NCID=aolprf00030000000001)

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Guest guest

My son also started preschool last august. He has missed at least 3 to 4

days a month since then. I too was scared of the 10 day rule, and immediately

went to the doctor and got a note from her stating what he has, that it is

upredictable, and will fever WHENEVER, and can last HOWEVER long. It also

stated that there was nothing contaigous and he COULD attend, if he felt up to

it. This was good enough for the PRESCHOOL. We will see what kindergarten

brings this July when we start!

We are scheduled for a T & A on April 4th, so PRAYERS from everyone that he

stays healthy for that and that it STOPS THESE DREADED FEVERS!

, best of luck!

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Guest guest

My son also started preschool last august. He has missed at least 3 to 4

days a month since then. I too was scared of the 10 day rule, and immediately

went to the doctor and got a note from her stating what he has, that it is

upredictable, and will fever WHENEVER, and can last HOWEVER long. It also

stated that there was nothing contaigous and he COULD attend, if he felt up to

it. This was good enough for the PRESCHOOL. We will see what kindergarten

brings this July when we start!

We are scheduled for a T & A on April 4th, so PRAYERS from everyone that he

stays healthy for that and that it STOPS THESE DREADED FEVERS!

, best of luck!

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Guest guest

My son also started preschool last august. He has missed at least 3 to 4

days a month since then. I too was scared of the 10 day rule, and immediately

went to the doctor and got a note from her stating what he has, that it is

upredictable, and will fever WHENEVER, and can last HOWEVER long. It also

stated that there was nothing contaigous and he COULD attend, if he felt up to

it. This was good enough for the PRESCHOOL. We will see what kindergarten

brings this July when we start!

We are scheduled for a T & A on April 4th, so PRAYERS from everyone that he

stays healthy for that and that it STOPS THESE DREADED FEVERS!

, best of luck!

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Guest guest

We also recently got a 504 for our daughter to protect her from the

absences. Our process went quite smoothly. It also helped to have a

diagnosis from our doctor and information ready for the school. As I

am sure you will most likely discover, they will not have heard of

and will need information about it. I hope your school is as

good as ours has been with us through this whole process. There is

also a document in the file section that we used to help create our

504. It gave us a great place to start.

Kami

Melaina age 6

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The great thing about our school is that it is small and there is

another little girl there that has HIDS so they are aware of what

Charish is going though. They know about fever syndromes so I am not

worried about that. What gets me is that there is this little girl that

has this and then my daughter comes in just a year later with fevers

and they treat her like she is going to make everyone sick and they

know already that she wont. They got a note from the doctor Tuesday

saying she can come back to school and as long as she feels like it she

can stay that she is not contagious. I gave them this note and then one

of the teachers tell me that she doesnt think that the note will work.

I was so mad. They had this other little girl in the same class last

year and knew what she went though. I dont see how people can treat

kids that are so sick so badly. She gets to school and crys to stay and

they send her home. Once she got to go back yesterday she cryed becasue

she didnt think that they wanted her there. My heart just broke she is

in Pre-K and they should not treat her this way. I so hope next year is

better. My then we should have a confermed diagnois. She is scheduled

to go to Vanderbilt sometime this month they havent called me with the

date yet. I am so hoping that it is when school is out for spring break.

I hope all goes well. I am not sure what to expect and that scares me

the most with her going again to Vandi. She goes once a year now for

heart test and I know what she will go though then. Please keep us in

your prayers.

Becca

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The great thing about our school is that it is small and there is

another little girl there that has HIDS so they are aware of what

Charish is going though. They know about fever syndromes so I am not

worried about that. What gets me is that there is this little girl that

has this and then my daughter comes in just a year later with fevers

and they treat her like she is going to make everyone sick and they

know already that she wont. They got a note from the doctor Tuesday

saying she can come back to school and as long as she feels like it she

can stay that she is not contagious. I gave them this note and then one

of the teachers tell me that she doesnt think that the note will work.

I was so mad. They had this other little girl in the same class last

year and knew what she went though. I dont see how people can treat

kids that are so sick so badly. She gets to school and crys to stay and

they send her home. Once she got to go back yesterday she cryed becasue

she didnt think that they wanted her there. My heart just broke she is

in Pre-K and they should not treat her this way. I so hope next year is

better. My then we should have a confermed diagnois. She is scheduled

to go to Vanderbilt sometime this month they havent called me with the

date yet. I am so hoping that it is when school is out for spring break.

I hope all goes well. I am not sure what to expect and that scares me

the most with her going again to Vandi. She goes once a year now for

heart test and I know what she will go though then. Please keep us in

your prayers.

Becca

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Guest guest

The great thing about our school is that it is small and there is

another little girl there that has HIDS so they are aware of what

Charish is going though. They know about fever syndromes so I am not

worried about that. What gets me is that there is this little girl that

has this and then my daughter comes in just a year later with fevers

and they treat her like she is going to make everyone sick and they

know already that she wont. They got a note from the doctor Tuesday

saying she can come back to school and as long as she feels like it she

can stay that she is not contagious. I gave them this note and then one

of the teachers tell me that she doesnt think that the note will work.

I was so mad. They had this other little girl in the same class last

year and knew what she went though. I dont see how people can treat

kids that are so sick so badly. She gets to school and crys to stay and

they send her home. Once she got to go back yesterday she cryed becasue

she didnt think that they wanted her there. My heart just broke she is

in Pre-K and they should not treat her this way. I so hope next year is

better. My then we should have a confermed diagnois. She is scheduled

to go to Vanderbilt sometime this month they havent called me with the

date yet. I am so hoping that it is when school is out for spring break.

I hope all goes well. I am not sure what to expect and that scares me

the most with her going again to Vandi. She goes once a year now for

heart test and I know what she will go though then. Please keep us in

your prayers.

Becca

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Guest guest

One dose of Prednisone would be enough to get my son back on track. So,

next year when she gets the fever and you can get an appt to verify that her

ears are clear and there's nothing else going on, then one to two doses

should be enough. Also, I have the same concerns for my son. We've had him

on Cimetidine since last April and his fevers are now non-existant. He

still had the episodes w/o the high fever for a while but now he hasn't had

an episode since November. I am not sure how long he'll have to take it but

I am thrilled with the results. We see a Rheumatologist and he monitors the

progress.

Hang in there,

in Ruckersville Va

Jerrett age 3 and has been fevering since 12wks old.

Jenna age 6 and Jensen age 2 are fine.

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  • 11 months later...

Boring, boring, boring.. don't you think?

First,,, what do they want Nick to get out of these assignments? Is it writing

practice, learning through repetition, or busy work? Or what?

I think what I would do is figure out a different way for him to do all that

work.. like making flash cards to practice... or fun worksheets or word searches

or... whatever.. something more interesting than copying the notes.

Perhaps making headlines and a few facts that go with them and have him match

them.. using a model or not, whatever his ability is.

What do YOU.. as his mother feel? Is it beneficial for him to do this? Could

it be made more interesting? Or cut down? Or is it just a power struggle with

him?

I have a tendency to redo homework a lot and they realize that I know his level

and ability and interests and usually follow my lead. It hasn't always been

that way, but we've gotten there through trial and error.

I think the big thing was that I let them know that we weren't trying to get him

OUT of doing work, just trying to make it more meaningful and fun for all.

I hope this helps.. perhaps it's not even what you were looking for, but it's

what came to mind when I read your post.

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I agree, it sounds very boring and copying notes seem pointless to him. What

is the point of him taking the notes, to understand the subject matter

better? I would make it more interesting- could he put the notes in simple

picture

form? Such as cartoon boxes. Then he could retell the notes using pictures

instead of rewriting the words. Could he use graphic organizers instead of

writing the notes? Such as a venn diagram, pro/con list, a web, etc. He

shouldn't be sitting there for hours doing homework. You might also have to

dangle

the carrot, what is important to him that he would get to do if he does his

work at school or is cooperative at home. I would also encourage the teacher to

reward him some how. Such as- completes his work for the week in class, he

gets 15 minutes of computer time on Fridays. Hope this helps.

Teacher and mom, Jen

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  • 10 months later...

I'm wondering if anyone out there has a checklist or interview questions that

they use when working with their child's school to select an aide that they

would be willing to share.

Also, could parents share their child's level of disability or type of in-school

assistance they need in correlation to how much time and what type of training

you do with aides? Also, how much does your child participate in the training.

Any other tips from students and parents for good outcomes with aides?

Thank you,

Alana

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I was put through the every other kid treatment until it nearly killed me half

home schooling can be a happy medium.

Matty Stepanik went to public school three days a week and thrived.

It can be the best of both worlds but it all depends on each individual

Another friend who's daughter has brittles bones disorder [severe forms have

respiratory issues as bad as SMA] had to throw in the towel and completely home

school after the school kept ignoring the kid getting assaulted on the

playground, had a broken bone ignored by the nurse, was refused a service dog

and had an assistant who was keeping her child from inteacting socially with her

peers.

It's a child by situation by child decision.

> >

> > I know I don't post often and I apologize for that. I do read the posts and

say prayers for those that need it and rejoice with the milestones and good

news.

> >  

> > So I am posting now in regards to Aschdon going back to school next year. My

husband and I have been homeschooling him for this school year and it has been

going great. I wouldn't say he is caught back up from the lack of care he had in

school last year but he has made great strides. (for those of you that don't

know, Aschdon had a horrible year last year. We found out too late that his one

on one aid was doing his school work for  him, so instead of teaching him like

she was suppose when he was home bound she would do the work and turn it in.

Aschdon ended up being at a 3.5 grade level at the end of 4th due to this.)

> >  This being said, he is so lonely. His friends are in so many activities and

such that he doesn't get to spend any time with them. I know education is

important but I feel for his emotional well being his friends are just as

important. We love having him home but we want to be able to help him grow apart

from us as well. Learn to rely and trust others again (last year ruined alot of

that, he has a very difficult time with others caring for him now). I want him

to experience dances, and the other classes the school has them do that we don't

do at home.

> >  

> > So I guess what I am asking, for those of you that send your kids to school,

I need ideas on how to get the proper kind of one on one help for my son. I need

some one that can care for his hygienically, nutrition, education, and be an

advocate for my son. I am going to be writing a letter to the principle, the

special education teacher and the nurse. Plus I would like to be able to have a

letter to give to the teachers and the students to take home (even though it is

a small community and alot of people know Aschdon I feel parents need to be

educated because alot of them are afraid to have their kids come over to our

house and Aschdon is never able to go to theirs). Aschdon is going to be going

into the 6th grade. That is what we are going to register him as. We have the

understanding that he will probably be pulled out for math and English classes

but there is no reason he cant do all of the other classes with his classmates

that he has gone to school

> > with since preschool.

> > I appreciate any kind of feed back, shared letters, ideas that are offered.

> > Kenya

> >

> >

> >

> >

> >

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Work with the school to interview the aide?! What a quaint notion!

Our school solicits no input from us as parents. The principal doesn't know who

's aide will be until the week before school starts each year. The Special

Education Office tells us they have no control over the process and cannot give

us any guidance or take our input into consideration. Labor Union rules

entirely dictate the process. Every year, a list of assignments (kids in need

of aides) is provided to the Union that represents non-teaching staff. They

offer them to a pool of their members who are allowed to pick the most desirable

jobs based upon seniority. If your kid is perceived as an easy " assignment, "

you will probably get the most experienced and capable one-on-one aide that the

school can offer. If your kid is difficult (like autistic or emotionally

disabled), you will get the least capable aide who is new to the job. Most of

our aides are 40-something stay-at-home moms who are coming back to work because

their own kids are now older. There is no training provided to them by the

school or the Union. Many of the aides show up for work the first day and have

no idea what they will need to do for their assigned child.

I have been told that is considered a somewhat easy assignment because she

is fairly independent. She does not need a nurse aide (no trach or anything).

It's basically taking her to the bathroom and carrying and opening her books.

But, her aide must be able to do some heavy lifting, so is not a 100% easy

job. Last year, the aide who picked was a 62-year old 5-foot woman with

arthritis. From the beginning, it was obvious that she was not capable of doing

some of the required tasks. She did not even have the strength to operate the

Hoyer lift. We spoke with the Special Education Office who said they could do

nothing because this aide had the most seniority in the Union and she could pick

whichever job she wanted regardless of her ability to perform the expected

duties. We had several meetings with the Principal, but after many promises

were made the Principal finally said she had no control over the selection of

aides. We sent a letter to the school board, and received a nice phone call one

evening from the school board President. He basically told us that the board

had no power to alter the Union contracts that had been negotiated, and the

contract stipulated that these decisions are made based upon seniority.

Fortunately for us, the old aide decided to retire in November. Of course, no

one told us of this change. just showed up at school one day and suddenly

had a new aide. I'm sure someone must have known that the old aide was retiring

ahead of time, but it didn't occur to anyone to tell the parents or the child.

The new aide can at least do the job so we have no big complaints right now.

We've learned to expect the unexpected and fortunately has kept a very

good attitude. She has learned how to survive in a big bureaucracy with no

accountability.

>

> I'm wondering if anyone out there has a checklist or interview questions that

they use when working with their child's school to select an aide that they

would be willing to share.

>

> Also, could parents share their child's level of disability or type of

in-school assistance they need in correlation to how much time and what type of

training you do with aides? Also, how much does your child participate in the

training.

>

> Any other tips from students and parents for good outcomes with aides?

>

> Thank you,

> Alana

>

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  • 6 months later...
Guest guest

So this points out the reason for the language of the law. Some chiro colleges don't include this training in their curriculum like WSCC/UWS. W. Snell,

D.C. Director, Solutions Sports & Spine, Inc at Hawthorne Wellness Center

3942 SE Hawthorne Blvd. Portland, OR 97214 Ph. 503-235-5484 Fax 503-235-3956

drpsnell.chiroweb.comwww.fixyourownback.comMember,

American College of Sports MedicineAssoc. Member, International Society of Clinical Rehabilitation Specialists From: docpartmanndc@...Date: Thu, 5 Aug 2010 17:56:30 -0700Subject: School

scott, so where do we getr the clinical training in cardio., etc. john partmann dc coos bay

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  • 4 months later...

I have a question for all of you if you dont mind my son greatly struggles in

math has not yet been dx with aspergers but instead with adhd, his self esteem

is very low and I feel that teachers is not making it any better These are some

of the things she tells my son(well one ofthem other things like it. if you

could read this and tell me what you think

Zack,

With much support, use of a calculator, and 1:1 step-by-step instruction as how

to do the concepts on the test you did receive 23.5 out of 30. I am glad that

you did attend school on December 22 so that your Unit 4 test could be completed

before break. --

Voight

Highlander Way Middle School

voightm@...

517-548-6252

We believe at Highlander Way the 3 R's- Rigor,Respect and Responsibility

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What are you bothered about? It sounds like she laid out the facts about supports he needed for the test and then gave his score, which was a 78. Are you concerned with the amount of support he needs to be successful or something else? Are those supports already included in his IEP?

From: <amandabeneteau@...> Sent: Tue, January 4, 2011 6:29:19 AMSubject: ( ) school

I have a question for all of you if you dont mind my son greatly struggles in math has not yet been dx with aspergers but instead with adhd, his self esteem is very low and I feel that teachers is not making it any better These are some of the things she tells my son(well one ofthem other things like it. if you could read this and tell me what you thinkZack,With much support, use of a calculator, and 1:1 step-by-step instruction as how to do the concepts on the test you did receive 23.5 out of 30. I am glad that you did attend school on December 22 so that your Unit 4 test could be completed before break. -- VoightHighlander Way Middle Schoolvoightm@...517-548-6252We believe at Highlander Way the 3 R's- Rigor,Respect and

Responsibility

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That was sent to my son and Im bothered that she had to include he needed much support and a calculator to succeed tthe message seems very insulting to me

From: MacAllister <smacalli@...>Subject: Re: ( ) school Date: Tuesday, January 4, 2011, 2:53 PM

What are you bothered about? It sounds like she laid out the facts about supports he needed for the test and then gave his score, which was a 78. Are you concerned with the amount of support he needs to be successful or something else? Are those supports already included in his IEP?

From: <amandabeneteau@...> Sent: Tue, January 4, 2011 6:29:19 AMSubject: ( ) school

I have a question for all of you if you dont mind my son greatly struggles in math has not yet been dx with aspergers but instead with adhd, his self esteem is very low and I feel that teachers is not making it any better These are some of the things she tells my son(well one ofthem other things like it. if you could read this and tell me what you thinkZack,With much support, use of a calculator, and 1:1 step-by-step instruction as how to do the concepts on the test you did receive 23.5 out of 30. I am glad that you did attend school on December 22 so that your Unit 4 test could be completed before break. -- VoightHighlander Way Middle Schoolvoightm@...517-548-6252We believe at Highlander Way the 3 R's- Rigor,Respect and

Responsibility

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So she's depressing him by laying out how much support he had to have. SIGH!

Do you feel comfortable talking to her? Or not mind irritating her? ;) You

could meet with her and point out how she doesn't need to add comments like

that. Unless for some reason she'd doing it as a paper trail for herself, his

records.... But why do that?

Had he been absent lately or does he take his workload slower than the rest of

the class, relating to that comment about attending on Dec. 22?

I know I got irritated because my son has a dysgraphia diagnosis and didn't need

the " write neater " comments he occasionally got from some teachers. He was

writing as neat as he could!

Quick thoughts,

>

> I have a question for all of you if you dont mind my son greatly struggles in

math has not yet been dx with aspergers but instead with adhd, his self esteem

is very low and I feel that teachers is not making it any better These are some

of the things she tells my son(well one ofthem other things like it. if you

could read this and tell me what you think

>

> Zack,

> With much support, use of a calculator, and 1:1 step-by-step instruction as

how to do the concepts on the test you did receive 23.5 out of 30. I am glad

that you did attend school on December 22 so that your Unit 4 test could be

completed before break. --

>

> Voight

> Highlander Way Middle School

> voightm@...

> 517-548-6252

> We believe at Highlander Way the 3 R's- Rigor,Respect and Responsibility

>

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