school issues

[Guest guest]

Hello My name is and many times my Jen has been

in situations that I wish I could change, but I am not

the one with the jra in my knees and ankles and wrists

and eye, I tell my Jen she has to make decisions on

your own. She needs to be her own advocate, she has to

be the one to know her limitations. Jen has been given

plenty of opportunity and she has either uses them or

not. I just make sure as parent that I follow up on

paperwork. for an example if my daughter is to tired

to run in gym she can choose to walk, or sit out. It

can not be held against her, we have doctors notes.

What I hope I am saying is let your daughter decide

what she wants. she will be the one who might not have

a good day. I hope i was not to outspoken but having a

12 year tell me what she wants is very important to me

Thanks for listening

mary Chesney

--- rebpick1artist <rebpick1artist@...> wrote:

> Here is the problem: Elaney has a homeroom teacher

> in an outer portable

> building. When it gets cold out she will have to go

> in a warm building,

> out in the cold, into warm then back again. All the

> kids will need to

> do this since the building is just to small.

> However, since Elaney's

> homeroom teacher is outside that means she will have

> to do it more

> often. I want to change her homeroom teacher BEFORE

> school starts, but

> Elaney doesn't want me to. Should I let her keep the

> teacher and wait

> and see what happens? By then it will be harder to

> change teachers. I

> don't know what to do and school starts in 3 days.

> By the way, Elaney

> has an IEP but none of this was considered at the

> last meeting because

> the schedules were not out yet.--- &

> Elaney(12 poly)

>

>

>

>

>

__________________________________________________

[Guest guest]

Hi, welcome to the group!

I'm guessing that the school still has to go through the same process

for the IEP, even if there is a 504 Plan.

So your son passed 7th grade? (You mentioned all the F's, was that

just later in the year but his grades averaged " passing " for the year?)

What kind of accommodations are in the 504 Plan?

We had one set up in 6th grade when my son's OCD began (he's now in

12th grade). He would have failed if not for the accommodations/mods

we had in the Plan. Since you're shooting for an IEP, I guess you can

skip complaining about the 504 not being followed, but the

school/teachers *do* have to follow it; if not getting answers there,

I'd go over their heads to the school system's 504 administrator.

What are some of his OC issues giving him trouble with his

schoolwork? My son couldn't even pick up a pencil sometimes, avoided

reading...list goes on! I did the writing for him at home for work

brought home/homework and read aloud his chapters, etc. Whew, tough

years for me too, but we got through them, things slowly improved.

single mom, 3 sons

, 17, with OCD, dysgraphia and Aspergers(autism-mild)

>

> Hi I'm new to the group...My 13 y/o son w/OCD,ADHD has a 504 in

> place but it is not being followed...the 504 was set up last

year...I

> asked for academic testing & an IEP this year...the Sp ed dept.

[Guest guest]

Thank You for answering...my son's issues are many...mostly he

organizing his papers books etc.... & has to have two or four of

everything...pencils papers notebooks...even numbers are key..has to

count alot...even steps so they are all " right " ...sometimes he has

to touch certain things a certain number of times & if he

thinks " past " the number he has to start all over again...or count

to that number again....like instead of 4 if he thinks about 5 he'll

count to 104 or 1004 etc... he calls these things he has to

do " habits " He did pass 7th grade because he went to summer

school....(I called the school to see if he was on the failing list

& they said he was not...got his report card 10 days after summer

school started & called the school VERY upset!!So he did go but had

to catch up...which was tough...but he did do it & he wasn't happy

about going but was very satified that he " did it " meaning passing

7th grade.) he did really well.....maybe b/c of the small group

setting?? The 504 has never been followed...it was put in place on

12-5?-05 or there about...it has modifications for smaller groups-

preferential seating-allowing more time-educational aide to help him

get necessary books/items for classes & to take his homework folder

from him & make sure it gets turned in....also memory upgrade for

his laptop...so he can record teachers instruction while he does

his " habits " ...so he can play it back when he is thru with " habits "

so he knows what he is supposed to be doing...which is very

important b/c when he doesn't know what to do he ends up distracting

the class & getting 10 minute break for it...it's hard to watch him

fail & see how he feels about that as well as the things he does &

can't control & know that what I am doing isn't doing enough but I

don't know what else to do...I have tried to talk to the " head of

special ed " & she says it takes time to get these things in

place....I refuse to go another year like last year....so I asked

for an IEP at the begining of this school year...I also have an ed

advocate meeting coming up Friday....so maybe that will be

helpful....I hate the waiting game....

> >

> > Hi I'm new to the group...My 13 y/o son w/OCD,ADHD has a 504

in

> > place but it is not being followed...the 504 was set up last

> year...I

> > asked for academic testing & an IEP this year...the Sp ed dept.

>

[Guest guest]

A referral meeting is a requirement to start the special ed process.

Basically, you'll state what you're seeing and why you feel he needs evaluation.

They'll have input from teachers. Then, they'll decided exactly what testing

to

do, i.e. educational, psych eval, etc... It's not a quick process. You'll

need to wait for appointments, but at least you'll get the ball rolling. Also,

don't just assume he has a learning disability - there could be other

causes. A 504 is not usually put in place for a learning disability, but

rather to

allow for modifications without spec ed services involvement.

You son is at a tough age - my son wasn't classified until the end of 7th

grade and had been under a 504 plan prior to that, which obviously was not

enough. He was classified as OHI (other health impaired) and no learning

disability was found upon testing - he also failed the 7th grade.

Just organize your thoughts prior to the meeting - tell them exactly what

you've noticed, let them know you want to work TOGETHER to make this a

successful year for your son.

Good luck!

In a message dated 9/11/2006 6:52:09 PM Central Standard Time,

siriuslives689@... writes:

It seems silly to me to

have a referral meeting when we already know he has learning

disabilities.disabilities.<WBR>..which is the reaso

[Guest guest]

Schools are like prison. There is a procedure. I am not aware of how things

are done in Maine as far as the laws of following the IEP but as far as getting

the teachers attention the way it works is first you go to the teacher, no

response, go to the principal, no response, go to the board, no response get a

lawyer.

They have a referral stage is federal procedure. Since all of this is

classified under the global unit of Special Ed, the teacher is required to have

all of this documented. I realize its mainly a waste of time. Look at it as a

consultation when you all ready know your kid needs braces.

Ethyl <brufan@...> wrote:

Hi I'm new to the group...My 13 y/o son w/OCD,ADHD has a 504 in

place but it is not being followed...the 504 was set up last year...I

asked for academic testing & an IEP this year...the Sp ed dept.

notified me of a " Referral Meeting " on Monday the 18th...does anyone

know how the education dept works in Maine?? It seems silly to me to

have a referral meeting when we already know he has learning

disabilities...which is the reason for the 504...Last year he finished

the 7th grade with 5 F's...I want him to have a productive year this

year & I am trying to get the school teacher etc on the same page but

so far no luck...teachers he has this year haven't answered two e-

mails I sent them so far...All suggestion appreciated!!

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

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[Guest guest]

thanks!

<@...> wrote: In the FILES section of the group

is a great write-up for OCD and

schools. It'd be good to print out and then if you see something that

particularly pertains to your child, highlight it!

" Children with OCD-The Role of School Personnel "

Lots of good info in the FILES section of this group!

Our list archives, bookmarks, files, and chat feature may be accessed at:

/ .

Our list advisors are Gail B. , Ed.D., Tamar Chansky, Ph.D.(

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louisharkins@... .

[Guest guest]

,

I don't know whether to be really bummed, or want to knock someone's teeth

in!! Where is the sensitivity? What are parents teaching their children these

days? How horrible that a third grader would be so bold as to announce that to

the whole class. How is she supposed to respond? " It was either this or die! "

?????

In Mo's school they teach " character development " so most of those comments,

while probably thought, aren't usually said out loud. It shouldn't be up to you

to teach her whole class some basic manners and compassion for another human

being. They will quickly learn that Olivia can hold her own. I just wish she

didn't have to fight for every inch. School is supposed to be fun. I totally

get her just wanting to be Olivia. Mo is the same way. We're hoping being in

band with her whole class will help this year. They just leave her out. Like

she's not even there. I tell her though, you say " HI " to everyone. You smile.

You let them know you are still there. Even just today I told her that even if

no one talks to her, there is ONE person (Jesus) who is always at her side and

thinks she is the absolute best.

I will be praying something good comes from this. My heart breaks for your

girl because I understand. Those kids don't know how blessed they are with

their health. They probably have their own problems anyway, everyone has

problems. The school needs to get on this if they plan to integrate other kids

with needs more critical and obvious than Olivia's. I love ya girl. Wish I

could be there with you. Hug your girl for me. She really is amazing. Tell

her that every day.

Shellie

heather@... wrote:

Here we again!

Olivia started school yesterday, and already she is running into problems.

Prior, to her starting school this year, she informed me that she did NOT

want me to talk to the class about her situation. She wants to be known

as Olivia, not Olivia with scoliosis. While I respect her feelings on

this 100%, I came to the conclusion that this approach was not a good one.

Olivia has no special needs, and you can barely even tell that she

suffers from scoliosis. My issue is, if we dont inform the children of

her back issues, they may not be sensitive to her very minimal needs.

Which would be not to knock her down, or hit her back. Thats it. I fear

that by not discussing these 2 issues with the children, I am not only

doing a disservice to Olivia, but also the other children. Imagine, that

one of them accidentaly knocked her down causing the rods to dislodge or

break her ribs......Not only would Olivia feel horrible, but the child

responsible would also be devistated.....So, I made the decision last

night, that I would talk to her classmates on Thurs.

I mentioned this to her teachers this a.m., and apparently one of them

discussed this briefly with the class this a.m. Right after the

discussion, some little boy in the class stated that Olivia walks funny

and that she sticks her butt out when she walks! (his exact words)

Anyway, I am on my way to her class again in a few minutes to discuss this

with the teachers. This needs to be addressed immediately, so things dont

spiral out of control.

Thanks for listening. I needed to vent! Please share with me any ideas

that you may have on how to properly handle this. This is all new to me

and I want to deal with this appropriately.

Thanks for any input.

Trying not to overreact...

HRH

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[Guest guest]

,

I have lots of thoughts about this... hopefully I can

consolodate my thoughts so they are understandable.

Braydon and I have always given and " show and tell "

presentation to his class at the beginning of the

school year (this is AFTER we've met with any/all

teachers/administrator in a 504 meeting so the

teachers/adults are well aware of his condition(s)).

We bring xrays, photos and any " visual aids " that are

necessary (age appropriate) to help the kids

understand why they can't touch/push/hit Braydon in

the back. When they can SEE (via the visual aids)

what we're lecturing about, it makes more sense to

them and the remember better (there will always be

some kids who forget).

After we talk about why its important to give Braydon

his personal space (and discussing what personal space

means) we talk about the MANY things he CAN do. We

let them ask questions about him and what he can and

can't do (no, tackle soccer is not an option). So

many things she/they CAN do.

Braydon usually feels confident enough that he will

take his shirt off and show the kids his back. They

think the scars are cool. I think this is the biggest

" seller " for the kids - seeing that his back isn't

straight and symmetrical like everyone else's. For

girls, I'm sure this is a more sensitive subject.

We also talk to the teacher before the " show and tell "

session about code words or things that the other kids

may feel are " special privileges. For example, we

worked out a way for Braydon to be able to go to the

restroom whenever he needed to (neurogenic bladder)

without getting permission. We also came up with a

plan to help kids avoid being behind him most the

time. He is the " sweep " . He is to be last in line

for anything - leaving the classroom for PE, recess,

lunch, assemblies, etc. To avoid the negativity of

being last, he is given some " responsibilities " with

being the sweep. He turns out the light in the

classroom, closes the door, makes sure no one is

behind him, etc. Whatever the age appropriate

assignment should be. Being the sweep became a

natural thing for him and his classmates. It was just

the way the class was. This avoided anyone pushing

him in the back in lunch line, or coming in from

recess (when they have to funnel/push through the

doorways).

We started this when Braydon was in 1st grade. From

that time on, he had a group of girls who tried to

" mother " him, especially when they were outside or

away from the classroom. He hated it, but they made

sure no one came near him LOL. It was only

occasionally they would do this, but it kind of

helped, actually.

We can't put our kids in bubble wrap. They are going

to have experiences in life that we don't like.

However, there are ways to make life a little less

stressful and a little less dangerous for our

seemingly fragile kids. Braydon has had very few

negative experiences in school. I think by stressing

differences (we're all different - some people need

shots everyday (diabetics), some people wear glasses,

some people are in a wheelchair, etc.) it helps them

see how much LIKE them she is. I would ask everyone

with blue eyes to raise their hand. Everyone with

black hair... everyone who has had a broken bone...

everyone who wears glasses... etc. You can customize

the questions to the class. Point out that not

everyone raises their hands for every question.

Everyone is different. That's what makes life fun and

exciting. etc. etc. etc.

I'm done rambling, I promise. I know you'll do great.

The biggest thing is to not panic. Olivia picks up

on your emotions (you know all this). Let her know

that you will support her 100% and you will help her

have a fantastic year, because she deserves it.

Let us know how things go.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

________________________________________________________________________________\

____

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[Guest guest]

Carmell,

As usually you have great ideas. I shouldn't write when I'm emotional!!!

Can't wait to hear how it turns out for Olivia. Tell Braydon hello from us.

Shellie

Carmell Burns wrote:

,

I have lots of thoughts about this... hopefully I can

consolodate my thoughts so they are understandable.

Braydon and I have always given and " show and tell "

presentation to his class at the beginning of the

school year (this is AFTER we've met with any/all

teachers/administrator in a 504 meeting so the

teachers/adults are well aware of his condition(s)).

We bring xrays, photos and any " visual aids " that are

necessary (age appropriate) to help the kids

understand why they can't touch/push/hit Braydon in

the back. When they can SEE (via the visual aids)

what we're lecturing about, it makes more sense to

them and the remember better (there will always be

some kids who forget).

After we talk about why its important to give Braydon

his personal space (and discussing what personal space

means) we talk about the MANY things he CAN do. We

let them ask questions about him and what he can and

can't do (no, tackle soccer is not an option). So

many things she/they CAN do.

Braydon usually feels confident enough that he will

take his shirt off and show the kids his back. They

think the scars are cool. I think this is the biggest

" seller " for the kids - seeing that his back isn't

straight and symmetrical like everyone else's. For

girls, I'm sure this is a more sensitive subject.

We also talk to the teacher before the " show and tell "

session about code words or things that the other kids

may feel are " special privileges. For example, we

worked out a way for Braydon to be able to go to the

restroom whenever he needed to (neurogenic bladder)

without getting permission. We also came up with a

plan to help kids avoid being behind him most the

time. He is the " sweep " . He is to be last in line

for anything - leaving the classroom for PE, recess,

lunch, assemblies, etc. To avoid the negativity of

being last, he is given some " responsibilities " with

being the sweep. He turns out the light in the

classroom, closes the door, makes sure no one is

behind him, etc. Whatever the age appropriate

assignment should be. Being the sweep became a

natural thing for him and his classmates. It was just

the way the class was. This avoided anyone pushing

him in the back in lunch line, or coming in from

recess (when they have to funnel/push through the

doorways).

We started this when Braydon was in 1st grade. From

that time on, he had a group of girls who tried to

" mother " him, especially when they were outside or

away from the classroom. He hated it, but they made

sure no one came near him LOL. It was only

occasionally they would do this, but it kind of

helped, actually.

We can't put our kids in bubble wrap. They are going

to have experiences in life that we don't like.

However, there are ways to make life a little less

stressful and a little less dangerous for our

seemingly fragile kids. Braydon has had very few

negative experiences in school. I think by stressing

differences (we're all different - some people need

shots everyday (diabetics), some people wear glasses,

some people are in a wheelchair, etc.) it helps them

see how much LIKE them she is. I would ask everyone

with blue eyes to raise their hand. Everyone with

black hair... everyone who has had a broken bone...

everyone who wears glasses... etc. You can customize

the questions to the class. Point out that not

everyone raises their hands for every question.

Everyone is different. That's what makes life fun and

exciting. etc. etc. etc.

I'm done rambling, I promise. I know you'll do great.

The biggest thing is to not panic. Olivia picks up

on your emotions (you know all this). Let her know

that you will support her 100% and you will help her

have a fantastic year, because she deserves it.

Let us know how things go.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

__________________________________________________________

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FareChase.

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

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when.

[Guest guest]

Thanks Carmell, Shellie, Sandi & everyone that responded.

In the past (K thru 3rd grade) I have also met with the teachers,

priciple, school nurse, etc....Anyone directly involved in her care, to

discuss her minimal needs and make sure they are informed.

This year was different. Olivia was adamant that I do not give any sort

of classroom presentation, and that I dont make a big deal over her

condition. I tried to respect these wishes, but 2 days into it, I knew

this was not the best approach.

I wish she could brag about her scars, but that just wont happen. She is

very self conscience about her scars and has already expressed wanting to

cover them with tatoos! Yikes!

She just wants to be a normal little girl. She doesnt even want me to use

the word scoliosis, and in a way, I cant say that I blame her. Scoliosis

is a big, scarey word to people of her age. She prefers that I say that

she has a curve in her back. She wants me to avaid the word scoliosis

altogether.

My thoughts on the presentation, which I will give tomorrow, is completely

different from last year. I think I will mention to the class that most

of us do have some degree of curvature in our backs. Some people have a

little curves, some big, some high, some low, some have 2 curves, some

even 3! And, try to celebrate our differences by using that example. I

will also use the word surgery, instead of scoliosis. (I think...)

I am going back and forth with this whole thing! I dont want Olivia to be

ashamed of her scoliosis, and in some ways by not using the word, I may be

giving her a bad message. I wish she was at the age where she could be

proud of the obstacles she has overcome, and would realize how wonderful

she is doing, considering what she has been through. I certainly dont

want her to think that scoliosis is something to hide or be ashamed

of....But, I am trying to put myself in her shoes, while being realistic,

too.

I need more input from you guys! Please help. Do you think that by not

mentioning the word scoliosis, I am doing her and everyone, including " the

cause " a disservice.

??

H.

> ,

>

> I have lots of thoughts about this... hopefully I can

> consolodate my thoughts so they are understandable.

>

> Braydon and I have always given and " show and tell "

> presentation to his class at the beginning of the

> school year (this is AFTER we've met with any/all

> teachers/administrator in a 504 meeting so the

> teachers/adults are well aware of his condition(s)).

> We bring xrays, photos and any " visual aids " that are

> necessary (age appropriate) to help the kids

> understand why they can't touch/push/hit Braydon in

> the back. When they can SEE (via the visual aids)

> what we're lecturing about, it makes more sense to

> them and the remember better (there will always be

> some kids who forget).

>

> After we talk about why its important to give Braydon

> his personal space (and discussing what personal space

> means) we talk about the MANY things he CAN do. We

> let them ask questions about him and what he can and

> can't do (no, tackle soccer is not an option). So

> many things she/they CAN do.

>

> Braydon usually feels confident enough that he will

> take his shirt off and show the kids his back. They

> think the scars are cool. I think this is the biggest

> " seller " for the kids - seeing that his back isn't

> straight and symmetrical like everyone else's. For

> girls, I'm sure this is a more sensitive subject.

>

> We also talk to the teacher before the " show and tell "

> session about code words or things that the other kids

> may feel are " special privileges. For example, we

> worked out a way for Braydon to be able to go to the

> restroom whenever he needed to (neurogenic bladder)

> without getting permission. We also came up with a

> plan to help kids avoid being behind him most the

> time. He is the " sweep " . He is to be last in line

> for anything - leaving the classroom for PE, recess,

> lunch, assemblies, etc. To avoid the negativity of

> being last, he is given some " responsibilities " with

> being the sweep. He turns out the light in the

> classroom, closes the door, makes sure no one is

> behind him, etc. Whatever the age appropriate

> assignment should be. Being the sweep became a

> natural thing for him and his classmates. It was just

> the way the class was. This avoided anyone pushing

> him in the back in lunch line, or coming in from

> recess (when they have to funnel/push through the

> doorways).

>

> We started this when Braydon was in 1st grade. From

> that time on, he had a group of girls who tried to

> " mother " him, especially when they were outside or

> away from the classroom. He hated it, but they made

> sure no one came near him LOL. It was only

> occasionally they would do this, but it kind of

> helped, actually.

>

> We can't put our kids in bubble wrap. They are going

> to have experiences in life that we don't like.

> However, there are ways to make life a little less

> stressful and a little less dangerous for our

> seemingly fragile kids. Braydon has had very few

> negative experiences in school. I think by stressing

> differences (we're all different - some people need

> shots everyday (diabetics), some people wear glasses,

> some people are in a wheelchair, etc.) it helps them

> see how much LIKE them she is. I would ask everyone

> with blue eyes to raise their hand. Everyone with

> black hair... everyone who has had a broken bone...

> everyone who wears glasses... etc. You can customize

> the questions to the class. Point out that not

> everyone raises their hands for every question.

> Everyone is different. That's what makes life fun and

> exciting. etc. etc. etc.

>

> I'm done rambling, I promise. I know you'll do great.

> The biggest thing is to not panic. Olivia picks up

> on your emotions (you know all this). Let her know

> that you will support her 100% and you will help her

> have a fantastic year, because she deserves it.

>

> Let us know how things go.

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

> Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR

> patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib

> anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal

> stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter

> in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant

> surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot

> with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

> discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA,

> etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

>

________________________________________________________________________________\

____

> Looking for a deal? Find great prices on flights and hotels with Yahoo!

> FareChase.

> http://farechase.yahoo.com/

>

[Guest guest]

Well, let me tell you my perspective. When we say " scoliosis " people

assume something totally different (and less urgent). So, we don't

use the word either.

I think it's best to give the most information in the shortest amount

of time and let them ask questions if they have any.

I would say whatever terms you and Olivia are comfortable with. If

that is " surgery " - it's absolutely true. As long as you are open and

honest, which you are, it will go well. I think it's great that

you're getting Olivia's input on it. I'm sure it's hard for her to be

the center of attention and maybe she's a little embarrassed, but in

the end I hope that the kids will embrace her and understand a little

more about what she's going through.

It's scary when you don't understand, especially for children. It's

easier to make fun of differences and children don't have that filter

that (most!) adults have and speak what is on their mind. Would

Olivia feel more comfortable if she wasn't in the room? Or maybe

she'd rather tell them about it herself or answer a few questions from

her peers? That way she's participating in the discussion versus

being talked about while she's in the room?

Another thought is to get down to the same level - sit together in the

grass if it's nice outside, or on the floor, if possible. It helps

them not feel so intimidated and helps you to relate.

Hope that helps a little. Let us know how it goes

We'll be thinking of you,

Sandi

[Guest guest]

Well, let me tell you my perspective. When we say " scoliosis " people

assume something totally different (and less urgent). So, we don't

use the word either.

I think it's best to give the most information in the shortest amount

of time and let them ask questions if they have any.

I would say whatever terms you and Olivia are comfortable with. If

that is " surgery " - it's absolutely true. As long as you are open and

honest, which you are, it will go well. I think it's great that

you're getting Olivia's input on it. I'm sure it's hard for her to be

the center of attention and maybe she's a little embarrassed, but in

the end I hope that the kids will embrace her and understand a little

more about what she's going through.

It's scary when you don't understand, especially for children. It's

easier to make fun of differences and children don't have that filter

that (most!) adults have and speak what is on their mind. Would

Olivia feel more comfortable if she wasn't in the room? Or maybe

she'd rather tell them about it herself or answer a few questions from

her peers? That way she's participating in the discussion versus

being talked about while she's in the room?

Another thought is to get down to the same level - sit together in the

grass if it's nice outside, or on the floor, if possible. It helps

them not feel so intimidated and helps you to relate.

Hope that helps a little. Let us know how it goes

We'll be thinking of you,

Sandi

[Guest guest]

I've been meaning to reply to this . Ugh. She's at that age where being

different really is hard on a kid. I used to do similar things when I worked in

special ed for my student who was totally blind. In his case, I usually did it

without him being there because I knew the kids would feel much more free to ask

questions that they would never ask if he was sitting in the room. It really

enabled me to explain things fully to them - you'd be surprised at the strange

misconceptions kids have (also why I don't think that kid meant her butt

sticking out to be a malicious comment). Unfortunately, I don't think Olivia

would let you handle it that way though.

I think explaining it as a curve is a good way to go. I don't think not saying

the word scoliosis is a disservice...most kids would understand a curve better

than scoliosis anyway. I would definitely meet with the teachers privately

though and stress how dangerous it would be for her to fall or be knocked down.

Noelle (12-2-01)

Ian (8-15-04)

Re: school issues

Thanks Carmell, Shellie, Sandi & everyone that responded.

In the past (K thru 3rd grade) I have also met with the teachers,

priciple, school nurse, etc....Anyone directly involved in her care, to

discuss her minimal needs and make sure they are informed.

This year was different. Olivia was adamant that I do not give any sort

of classroom presentation, and that I dont make a big deal over her

condition. I tried to respect these wishes, but 2 days into it, I knew

this was not the best approach.

I wish she could brag about her scars, but that just wont happen. She is

very self conscience about her scars and has already expressed wanting to

cover them with tatoos! Yikes!

She just wants to be a normal little girl. She doesnt even want me to use

the word scoliosis, and in a way, I cant say that I blame her. Scoliosis

is a big, scarey word to people of her age. She prefers that I say that

she has a curve in her back. She wants me to avaid the word scoliosis

altogether.

My thoughts on the presentation, which I will give tomorrow, is completely

different from last year. I think I will mention to the class that most

of us do have some degree of curvature in our backs. Some people have a

little curves, some big, some high, some low, some have 2 curves, some

even 3! And, try to celebrate our differences by using that example. I

will also use the word surgery, instead of scoliosis. (I think...)

I am going back and forth with this whole thing! I dont want Olivia to be

ashamed of her scoliosis, and in some ways by not using the word, I may be

giving her a bad message. I wish she was at the age where she could be

proud of the obstacles she has overcome, and would realize how wonderful

she is doing, considering what she has been through. I certainly dont

want her to think that scoliosis is something to hide or be ashamed

of....But, I am trying to put myself in her shoes, while being realistic,

too.

I need more input from you guys! Please help. Do you think that by not

mentioning the word scoliosis, I am doing her and everyone, including " the

cause " a disservice.

??

H.

> ,

>

> I have lots of thoughts about this... hopefully I can

> consolodate my thoughts so they are understandable.

>

> Braydon and I have always given and " show and tell "

> presentation to his class at the beginning of the

> school year (this is AFTER we've met with any/all

> teachers/administrator in a 504 meeting so the

> teachers/adults are well aware of his condition(s)).

> We bring xrays, photos and any " visual aids " that are

> necessary (age appropriate) to help the kids

> understand why they can't touch/push/hit Braydon in

> the back. When they can SEE (via the visual aids)

> what we're lecturing about, it makes more sense to

> them and the remember better (there will always be

> some kids who forget).

>

> After we talk about why its important to give Braydon

> his personal space (and discussing what personal space

> means) we talk about the MANY things he CAN do. We

> let them ask questions about him and what he can and

> can't do (no, tackle soccer is not an option). So

> many things she/they CAN do.

>

> Braydon usually feels confident enough that he will

> take his shirt off and show the kids his back. They

> think the scars are cool. I think this is the biggest

> " seller " for the kids - seeing that his back isn't

> straight and symmetrical like everyone else's. For

> girls, I'm sure this is a more sensitive subject.

>

> We also talk to the teacher before the " show and tell "

> session about code words or things that the other kids

> may feel are " special privileges. For example, we

> worked out a way for Braydon to be able to go to the

> restroom whenever he needed to (neurogenic bladder)

> without getting permission. We also came up with a

> plan to help kids avoid being behind him most the

> time. He is the " sweep " . He is to be last in line

> for anything - leaving the classroom for PE, recess,

> lunch, assemblies, etc. To avoid the negativity of

> being last, he is given some " responsibilities " with

> being the sweep. He turns out the light in the

> classroom, closes the door, makes sure no one is

> behind him, etc. Whatever the age appropriate

> assignment should be. Being the sweep became a

> natural thing for him and his classmates. It was just

> the way the class was. This avoided anyone pushing

> him in the back in lunch line, or coming in from

> recess (when they have to funnel/push through the

> doorways).

>

> We started this when Braydon was in 1st grade. From

> that time on, he had a group of girls who tried to

> " mother " him, especially when they were outside or

> away from the classroom. He hated it, but they made

> sure no one came near him LOL. It was only

> occasionally they would do this, but it kind of

> helped, actually.

>

> We can't put our kids in bubble wrap. They are going

> to have experiences in life that we don't like.

> However, there are ways to make life a little less

> stressful and a little less dangerous for our

> seemingly fragile kids. Braydon has had very few

> negative experiences in school. I think by stressing

> differences (we're all different - some people need

> shots everyday (diabetics), some people wear glasses,

> some people are in a wheelchair, etc.) it helps them

> see how much LIKE them she is. I would ask everyone

> with blue eyes to raise their hand. Everyone with

> black hair... everyone who has had a broken bone...

> everyone who wears glasses... etc. You can customize

> the questions to the class. Point out that not

> everyone raises their hands for every question.

> Everyone is different. That's what makes life fun and

> exciting. etc. etc. etc.

>

> I'm done rambling, I promise. I know you'll do great.

> The biggest thing is to not panic. Olivia picks up

> on your emotions (you know all this). Let her know

> that you will support her 100% and you will help her

> have a fantastic year, because she deserves it.

>

> Let us know how things go.

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

> Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR

> patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib

> anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal

> stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter

> in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant

> surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot

> with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

> discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA,

> etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

> __________________________________________________________

> Looking for a deal? Find great prices on flights and hotels with Yahoo!

> FareChase.

> http://farechase.yahoo.com/

>

[Guest guest]

I've been meaning to reply to this . Ugh. She's at that age where being

different really is hard on a kid. I used to do similar things when I worked in

special ed for my student who was totally blind. In his case, I usually did it

without him being there because I knew the kids would feel much more free to ask

questions that they would never ask if he was sitting in the room. It really

enabled me to explain things fully to them - you'd be surprised at the strange

misconceptions kids have (also why I don't think that kid meant her butt

sticking out to be a malicious comment). Unfortunately, I don't think Olivia

would let you handle it that way though.

I think explaining it as a curve is a good way to go. I don't think not saying

the word scoliosis is a disservice...most kids would understand a curve better

than scoliosis anyway. I would definitely meet with the teachers privately

though and stress how dangerous it would be for her to fall or be knocked down.

Noelle (12-2-01)

Ian (8-15-04)

Re: school issues

Thanks Carmell, Shellie, Sandi & everyone that responded.

In the past (K thru 3rd grade) I have also met with the teachers,

priciple, school nurse, etc....Anyone directly involved in her care, to

discuss her minimal needs and make sure they are informed.

This year was different. Olivia was adamant that I do not give any sort

of classroom presentation, and that I dont make a big deal over her

condition. I tried to respect these wishes, but 2 days into it, I knew

this was not the best approach.

I wish she could brag about her scars, but that just wont happen. She is

very self conscience about her scars and has already expressed wanting to

cover them with tatoos! Yikes!

She just wants to be a normal little girl. She doesnt even want me to use

the word scoliosis, and in a way, I cant say that I blame her. Scoliosis

is a big, scarey word to people of her age. She prefers that I say that

she has a curve in her back. She wants me to avaid the word scoliosis

altogether.

My thoughts on the presentation, which I will give tomorrow, is completely

different from last year. I think I will mention to the class that most

of us do have some degree of curvature in our backs. Some people have a

little curves, some big, some high, some low, some have 2 curves, some

even 3! And, try to celebrate our differences by using that example. I

will also use the word surgery, instead of scoliosis. (I think...)

I am going back and forth with this whole thing! I dont want Olivia to be

ashamed of her scoliosis, and in some ways by not using the word, I may be

giving her a bad message. I wish she was at the age where she could be

proud of the obstacles she has overcome, and would realize how wonderful

she is doing, considering what she has been through. I certainly dont

want her to think that scoliosis is something to hide or be ashamed

of....But, I am trying to put myself in her shoes, while being realistic,

too.

I need more input from you guys! Please help. Do you think that by not

mentioning the word scoliosis, I am doing her and everyone, including " the

cause " a disservice.

??

H.

> ,

>

> I have lots of thoughts about this... hopefully I can

> consolodate my thoughts so they are understandable.

>

> Braydon and I have always given and " show and tell "

> presentation to his class at the beginning of the

> school year (this is AFTER we've met with any/all

> teachers/administrator in a 504 meeting so the

> teachers/adults are well aware of his condition(s)).

> We bring xrays, photos and any " visual aids " that are

> necessary (age appropriate) to help the kids

> understand why they can't touch/push/hit Braydon in

> the back. When they can SEE (via the visual aids)

> what we're lecturing about, it makes more sense to

> them and the remember better (there will always be

> some kids who forget).

>

> After we talk about why its important to give Braydon

> his personal space (and discussing what personal space

> means) we talk about the MANY things he CAN do. We

> let them ask questions about him and what he can and

> can't do (no, tackle soccer is not an option). So

> many things she/they CAN do.

>

> Braydon usually feels confident enough that he will

> take his shirt off and show the kids his back. They

> think the scars are cool. I think this is the biggest

> " seller " for the kids - seeing that his back isn't

> straight and symmetrical like everyone else's. For

> girls, I'm sure this is a more sensitive subject.

>

> We also talk to the teacher before the " show and tell "

> session about code words or things that the other kids

> may feel are " special privileges. For example, we

> worked out a way for Braydon to be able to go to the

> restroom whenever he needed to (neurogenic bladder)

> without getting permission. We also came up with a

> plan to help kids avoid being behind him most the

> time. He is the " sweep " . He is to be last in line

> for anything - leaving the classroom for PE, recess,

> lunch, assemblies, etc. To avoid the negativity of

> being last, he is given some " responsibilities " with

> being the sweep. He turns out the light in the

> classroom, closes the door, makes sure no one is

> behind him, etc. Whatever the age appropriate

> assignment should be. Being the sweep became a

> natural thing for him and his classmates. It was just

> the way the class was. This avoided anyone pushing

> him in the back in lunch line, or coming in from

> recess (when they have to funnel/push through the

> doorways).

>

> We started this when Braydon was in 1st grade. From

> that time on, he had a group of girls who tried to

> " mother " him, especially when they were outside or

> away from the classroom. He hated it, but they made

> sure no one came near him LOL. It was only

> occasionally they would do this, but it kind of

> helped, actually.

>

> We can't put our kids in bubble wrap. They are going

> to have experiences in life that we don't like.

> However, there are ways to make life a little less

> stressful and a little less dangerous for our

> seemingly fragile kids. Braydon has had very few

> negative experiences in school. I think by stressing

> differences (we're all different - some people need

> shots everyday (diabetics), some people wear glasses,

> some people are in a wheelchair, etc.) it helps them

> see how much LIKE them she is. I would ask everyone

> with blue eyes to raise their hand. Everyone with

> black hair... everyone who has had a broken bone...

> everyone who wears glasses... etc. You can customize

> the questions to the class. Point out that not

> everyone raises their hands for every question.

> Everyone is different. That's what makes life fun and

> exciting. etc. etc. etc.

>

> I'm done rambling, I promise. I know you'll do great.

> The biggest thing is to not panic. Olivia picks up

> on your emotions (you know all this). Let her know

> that you will support her 100% and you will help her

> have a fantastic year, because she deserves it.

>

> Let us know how things go.

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

> Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR

> patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib

> anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal

> stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter

> in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant

> surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot

> with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

> discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA,

> etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

> __________________________________________________________

> Looking for a deal? Find great prices on flights and hotels with Yahoo!

> FareChase.

> http://farechase.yahoo.com/

>

[Guest guest]

Sandi,

You are so right! When we say scoliosis, I have had comments such as, " Oh,

that's nothing serious then. "

Noelle (12-2-01)

Ian (8-15-04)

Re: school issues

Well, let me tell you my perspective. When we say " scoliosis " people

assume something totally different (and less urgent). So, we don't

use the word either.

I think it's best to give the most information in the shortest amount

of time and let them ask questions if they have any.

I would say whatever terms you and Olivia are comfortable with. If

that is " surgery " - it's absolutely true. As long as you are open and

honest, which you are, it will go well. I think it's great that

you're getting Olivia's input on it. I'm sure it's hard for her to be

the center of attention and maybe she's a little embarrassed, but in

the end I hope that the kids will embrace her and understand a little

more about what she's going through.

It's scary when you don't understand, especially for children. It's

easier to make fun of differences and children don't have that filter

that (most!) adults have and speak what is on their mind. Would

Olivia feel more comfortable if she wasn't in the room? Or maybe

she'd rather tell them about it herself or answer a few questions from

her peers? That way she's participating in the discussion versus

being talked about while she's in the room?

Another thought is to get down to the same level - sit together in the

grass if it's nice outside, or on the floor, if possible. It helps

them not feel so intimidated and helps you to relate.

Hope that helps a little. Let us know how it goes

We'll be thinking of you,

Sandi

[Guest guest]

Sandi,

You are so right! When we say scoliosis, I have had comments such as, " Oh,

that's nothing serious then. "

Noelle (12-2-01)

Ian (8-15-04)

Re: school issues

Well, let me tell you my perspective. When we say " scoliosis " people

assume something totally different (and less urgent). So, we don't

use the word either.

I think it's best to give the most information in the shortest amount

of time and let them ask questions if they have any.

I would say whatever terms you and Olivia are comfortable with. If

that is " surgery " - it's absolutely true. As long as you are open and

honest, which you are, it will go well. I think it's great that

you're getting Olivia's input on it. I'm sure it's hard for her to be

the center of attention and maybe she's a little embarrassed, but in

the end I hope that the kids will embrace her and understand a little

more about what she's going through.

It's scary when you don't understand, especially for children. It's

easier to make fun of differences and children don't have that filter

that (most!) adults have and speak what is on their mind. Would

Olivia feel more comfortable if she wasn't in the room? Or maybe

she'd rather tell them about it herself or answer a few questions from

her peers? That way she's participating in the discussion versus

being talked about while she's in the room?

Another thought is to get down to the same level - sit together in the

grass if it's nice outside, or on the floor, if possible. It helps

them not feel so intimidated and helps you to relate.

Hope that helps a little. Let us know how it goes

We'll be thinking of you,

Sandi

[Guest guest]

Sandi,

You are so right! When we say scoliosis, I have had comments such as, " Oh,

that's nothing serious then. "

Noelle (12-2-01)

Ian (8-15-04)

Re: school issues

Well, let me tell you my perspective. When we say " scoliosis " people

assume something totally different (and less urgent). So, we don't

use the word either.

I think it's best to give the most information in the shortest amount

of time and let them ask questions if they have any.

I would say whatever terms you and Olivia are comfortable with. If

that is " surgery " - it's absolutely true. As long as you are open and

honest, which you are, it will go well. I think it's great that

you're getting Olivia's input on it. I'm sure it's hard for her to be

the center of attention and maybe she's a little embarrassed, but in

the end I hope that the kids will embrace her and understand a little

more about what she's going through.

It's scary when you don't understand, especially for children. It's

easier to make fun of differences and children don't have that filter

that (most!) adults have and speak what is on their mind. Would

Olivia feel more comfortable if she wasn't in the room? Or maybe

she'd rather tell them about it herself or answer a few questions from

her peers? That way she's participating in the discussion versus

being talked about while she's in the room?

Another thought is to get down to the same level - sit together in the

grass if it's nice outside, or on the floor, if possible. It helps

them not feel so intimidated and helps you to relate.

Hope that helps a little. Let us know how it goes

We'll be thinking of you,

Sandi

[Guest guest]

,

You know I really have to wonder about that school!

You are doing the right thing - I know Liv just wants to be Olivia, and not

" that girl with scoliosis " and I am totally behind her on that!

It pisses me off when kids are so thoughtless and that they haven't been

taught to have some character and instead of being obnoxious, they should be

friendly. Of course, considering what you have told us in the past about that

school I don't think the teachers have either.

I know Olivia will hold her head high and deal with it, but she shouldn't have

to. I don't think you are wrong in talking to her teacher at least, but the

teacher shouldn't make a big deal about it either if it isn't warranted. I am

sending big hugs and prayers that the staff in that school wise up or Shellie

and I may have to come with our steel toed books and kick some academic butts

into shape!

Love ya,

Gail and

heather@... wrote:

Here we again!

Olivia started school yesterday, and already she is running into problems.

Prior, to her starting school this year, she informed me that she did NOT

want me to talk to the class about her situation. She wants to be known

as Olivia, not Olivia with scoliosis. While I respect her feelings on

this 100%, I came to the conclusion that this approach was not a good one.

Olivia has no special needs, and you can barely even tell that she

suffers from scoliosis. My issue is, if we dont inform the children of

her back issues, they may not be sensitive to her very minimal needs.

Which would be not to knock her down, or hit her back. Thats it. I fear

that by not discussing these 2 issues with the children, I am not only

doing a disservice to Olivia, but also the other children. Imagine, that

one of them accidentaly knocked her down causing the rods to dislodge or

break her ribs......Not only would Olivia feel horrible, but the child

responsible would also be devistated.....So, I made the decision last

night, that I would talk to her classmates on Thurs.

I mentioned this to her teachers this a.m., and apparently one of them

discussed this briefly with the class this a.m. Right after the

discussion, some little boy in the class stated that Olivia walks funny

and that she sticks her butt out when she walks! (his exact words)

Anyway, I am on my way to her class again in a few minutes to discuss this

with the teachers. This needs to be addressed immediately, so things dont

spiral out of control.

Thanks for listening. I needed to vent! Please share with me any ideas

that you may have on how to properly handle this. This is all new to me

and I want to deal with this appropriately.

Thanks for any input.

Trying not to overreact...

HRH

[Guest guest]

,

You know I really have to wonder about that school!

You are doing the right thing - I know Liv just wants to be Olivia, and not

" that girl with scoliosis " and I am totally behind her on that!

It pisses me off when kids are so thoughtless and that they haven't been

taught to have some character and instead of being obnoxious, they should be

friendly. Of course, considering what you have told us in the past about that

school I don't think the teachers have either.

I know Olivia will hold her head high and deal with it, but she shouldn't have

to. I don't think you are wrong in talking to her teacher at least, but the

teacher shouldn't make a big deal about it either if it isn't warranted. I am

sending big hugs and prayers that the staff in that school wise up or Shellie

and I may have to come with our steel toed books and kick some academic butts

into shape!

Love ya,

Gail and

heather@... wrote:

Here we again!

Olivia started school yesterday, and already she is running into problems.

Prior, to her starting school this year, she informed me that she did NOT

want me to talk to the class about her situation. She wants to be known

as Olivia, not Olivia with scoliosis. While I respect her feelings on

this 100%, I came to the conclusion that this approach was not a good one.

Olivia has no special needs, and you can barely even tell that she

suffers from scoliosis. My issue is, if we dont inform the children of

her back issues, they may not be sensitive to her very minimal needs.

Which would be not to knock her down, or hit her back. Thats it. I fear

that by not discussing these 2 issues with the children, I am not only

doing a disservice to Olivia, but also the other children. Imagine, that

one of them accidentaly knocked her down causing the rods to dislodge or

break her ribs......Not only would Olivia feel horrible, but the child

responsible would also be devistated.....So, I made the decision last

night, that I would talk to her classmates on Thurs.

I mentioned this to her teachers this a.m., and apparently one of them

discussed this briefly with the class this a.m. Right after the

discussion, some little boy in the class stated that Olivia walks funny

and that she sticks her butt out when she walks! (his exact words)

Anyway, I am on my way to her class again in a few minutes to discuss this

with the teachers. This needs to be addressed immediately, so things dont

spiral out of control.

Thanks for listening. I needed to vent! Please share with me any ideas

that you may have on how to properly handle this. This is all new to me

and I want to deal with this appropriately.

Thanks for any input.

Trying not to overreact...

HRH

[Guest guest]

Hi, !

First and foremost, I'd like to thank you for all your hard, hard work in

organizing not one, but TWO ETPs this month! What an accomplishment! I've been

marginally involved in setting up much smaller presentations than these in the

past and I know what a huge undertaking it is. Thanks for your dedication and

love! And may I add, that in just the few months that we (Matson, Steph and

families) have been involved, I've seen so much help being shared. I wish the

docs could and would sit down and read these postings once in awhile to see

exactly what the concerns and worries are of the parents involved. Based on the

posts that I read religiously, how much help and the many hints you and the

other moms/dads have given one another during these trials with infantile

scoliosis is just awesome! Thank God for the Internet and thank God for you

all!

Anyway, I wanted to say that after reading your first posting regarding

Olivia's new school year, and having spent the first 10 or so years in the

elementary school setting and the second half in the high school setting, I

thought I might have an idea or two on how to approach the situation. However,

after reading Carmell's , Shellie's and Sandi's advice, I don't think there's

anything I can add. They all have some wonderful ideas and and it's nice for

you to be able to pick and choose what might work for you and Olivia. I do

think the " visual aids " is a great idea for third graders, as they are still so

" hands-on. " Maybe not having Olivia there also might be a good idea for both her

and the other children, but that has to be decided by you and Olivia. My only

additional thought would be the possibility of sending a note home to the

parents of children in her class, so they, too, could stress the importance of

not being physical around Olivia. This would most likely

have to be approved by the administration, but I can't imagine any principal

not seeing the benefits of doing this.

I hope you know that there are a lot of people wishing you the very best

tomorrow as you do what is needed for Olivia. Being a mom is hard work, but

knowing you are doing the best for your little angel is the best reward one can

have. And of course, those little hugs and kisses, too!!! My prayers will be

with you!

Gwen

Matson's Nana

heather@... wrote:

Thanks Carmell, Shellie, Sandi & everyone that responded.

In the past (K thru 3rd grade) I have also met with the teachers,

priciple, school nurse, etc....Anyone directly involved in her care, to

discuss her minimal needs and make sure they are informed.

This year was different. Olivia was adamant that I do not give any sort

of classroom presentation, and that I dont make a big deal over her

condition. I tried to respect these wishes, but 2 days into it, I knew

this was not the best approach.

I wish she could brag about her scars, but that just wont happen. She is

very self conscience about her scars and has already expressed wanting to

cover them with tatoos! Yikes!

She just wants to be a normal little girl. She doesnt even want me to use

the word scoliosis, and in a way, I cant say that I blame her. Scoliosis

is a big, scarey word to people of her age. She prefers that I say that

she has a curve in her back. She wants me to avaid the word scoliosis

altogether.

My thoughts on the presentation, which I will give tomorrow, is completely

different from last year. I think I will mention to the class that most

of us do have some degree of curvature in our backs. Some people have a

little curves, some big, some high, some low, some have 2 curves, some

even 3! And, try to celebrate our differences by using that example. I

will also use the word surgery, instead of scoliosis. (I think...)

I am going back and forth with this whole thing! I dont want Olivia to be

ashamed of her scoliosis, and in some ways by not using the word, I may be

giving her a bad message. I wish she was at the age where she could be

proud of the obstacles she has overcome, and would realize how wonderful

she is doing, considering what she has been through. I certainly dont

want her to think that scoliosis is something to hide or be ashamed

of....But, I am trying to put myself in her shoes, while being realistic,

too.

I need more input from you guys! Please help. Do you think that by not

mentioning the word scoliosis, I am doing her and everyone, including " the

cause " a disservice.

??

H.

> ,

>

> I have lots of thoughts about this... hopefully I can

> consolodate my thoughts so they are understandable.

>

> Braydon and I have always given and " show and tell "

> presentation to his class at the beginning of the

> school year (this is AFTER we've met with any/all

> teachers/administrator in a 504 meeting so the

> teachers/adults are well aware of his condition(s)).

> We bring xrays, photos and any " visual aids " that are

> necessary (age appropriate) to help the kids

> understand why they can't touch/push/hit Braydon in

> the back. When they can SEE (via the visual aids)

> what we're lecturing about, it makes more sense to

> them and the remember better (there will always be

> some kids who forget).

>

> After we talk about why its important to give Braydon

> his personal space (and discussing what personal space

> means) we talk about the MANY things he CAN do. We

> let them ask questions about him and what he can and

> can't do (no, tackle soccer is not an option). So

> many things she/they CAN do.

>

> Braydon usually feels confident enough that he will

> take his shirt off and show the kids his back. They

> think the scars are cool. I think this is the biggest

> " seller " for the kids - seeing that his back isn't

> straight and symmetrical like everyone else's. For

> girls, I'm sure this is a more sensitive subject.

>

> We also talk to the teacher before the " show and tell "

> session about code words or things that the other kids

> may feel are " special privileges. For example, we

> worked out a way for Braydon to be able to go to the

> restroom whenever he needed to (neurogenic bladder)

> without getting permission. We also came up with a

> plan to help kids avoid being behind him most the

> time. He is the " sweep " . He is to be last in line

> for anything - leaving the classroom for PE, recess,

> lunch, assemblies, etc. To avoid the negativity of

> being last, he is given some " responsibilities " with

> being the sweep. He turns out the light in the

> classroom, closes the door, makes sure no one is

> behind him, etc. Whatever the age appropriate

> assignment should be. Being the sweep became a

> natural thing for him and his classmates. It was just

> the way the class was. This avoided anyone pushing

> him in the back in lunch line, or coming in from

> recess (when they have to funnel/push through the

> doorways).

>

> We started this when Braydon was in 1st grade. From

> that time on, he had a group of girls who tried to

> " mother " him, especially when they were outside or

> away from the classroom. He hated it, but they made

> sure no one came near him LOL. It was only

> occasionally they would do this, but it kind of

> helped, actually.

>

> We can't put our kids in bubble wrap. They are going

> to have experiences in life that we don't like.

> However, there are ways to make life a little less

> stressful and a little less dangerous for our

> seemingly fragile kids. Braydon has had very few

> negative experiences in school. I think by stressing

> differences (we're all different - some people need

> shots everyday (diabetics), some people wear glasses,

> some people are in a wheelchair, etc.) it helps them

> see how much LIKE them she is. I would ask everyone

> with blue eyes to raise their hand. Everyone with

> black hair... everyone who has had a broken bone...

> everyone who wears glasses... etc. You can customize

> the questions to the class. Point out that not

> everyone raises their hands for every question.

> Everyone is different. That's what makes life fun and

> exciting. etc. etc. etc.

>

> I'm done rambling, I promise. I know you'll do great.

> The biggest thing is to not panic. Olivia picks up

> on your emotions (you know all this). Let her know

> that you will support her 100% and you will help her

> have a fantastic year, because she deserves it.

>

> Let us know how things go.

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

> Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR

> patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib

> anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal

> stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter

> in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant

> surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot

> with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

> discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA,

> etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

> __________________________________________________________

> Looking for a deal? Find great prices on flights and hotels with Yahoo!

> FareChase.

> http://farechase.yahoo.com/

>

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

Choose the right car based on your needs. Check out Yahoo! Autos new Car Finder

tool.

[Guest guest]

,

I know this is hard for you.

Although I can relate to Sandi and as far as people not taking

Infantile Scoliosis as something so serious I do NOT agree to leave the word

out.

That is what our children have...........Infantile " Scoliosis " .......right?

I know Olivia is at a hard age where children are at times mean, but I think not

saying " scoliosis " is in a way telling her it is a " bad " word. Plus the

children need to hear it, know it and understand it. Who better than you to

explain it.

It may just be me, but I would have to go against what she wants.

I made a promise to myself that (and his brother)would always be totally

aware and comfortable about having " SCOLIOSIS " . And everything that comes

along with it. Including calling it what it is and explaining to total strangers

what my son has.

I don't mean to sound harsh, but feel very strong about this.

These are and will be very strong children we all have.

Good luck I know you will figure it all out and do what you feel is best for

Olivia.

You always do.

Let us know how it goes,

Tasha

heather@... wrote: Thanks

Carmell, Shellie, Sandi & everyone that responded.

In the past (K thru 3rd grade) I have also met with the teachers,

priciple, school nurse, etc....Anyone directly involved in her care, to

discuss her minimal needs and make sure they are informed.

This year was different. Olivia was adamant that I do not give any sort

of classroom presentation, and that I dont make a big deal over her

condition. I tried to respect these wishes, but 2 days into it, I knew

this was not the best approach.

I wish she could brag about her scars, but that just wont happen. She is

very self conscience about her scars and has already expressed wanting to

cover them with tatoos! Yikes!

She just wants to be a normal little girl. She doesnt even want me to use

the word scoliosis, and in a way, I cant say that I blame her. Scoliosis

is a big, scarey word to people of her age. She prefers that I say that

she has a curve in her back. She wants me to avaid the word scoliosis

altogether.

My thoughts on the presentation, which I will give tomorrow, is completely

different from last year. I think I will mention to the class that most

of us do have some degree of curvature in our backs. Some people have a

little curves, some big, some high, some low, some have 2 curves, some

even 3! And, try to celebrate our differences by using that example. I

will also use the word surgery, instead of scoliosis. (I think...)

I am going back and forth with this whole thing! I dont want Olivia to be

ashamed of her scoliosis, and in some ways by not using the word, I may be

giving her a bad message. I wish she was at the age where she could be

proud of the obstacles she has overcome, and would realize how wonderful

she is doing, considering what she has been through. I certainly dont

want her to think that scoliosis is something to hide or be ashamed

of....But, I am trying to put myself in her shoes, while being realistic,

too.

I need more input from you guys! Please help. Do you think that by not

mentioning the word scoliosis, I am doing her and everyone, including " the

cause " a disservice.

??

H.

> ,

>

> I have lots of thoughts about this... hopefully I can

> consolodate my thoughts so they are understandable.

>

> Braydon and I have always given and " show and tell "

> presentation to his class at the beginning of the

> school year (this is AFTER we've met with any/all

> teachers/administrator in a 504 meeting so the

> teachers/adults are well aware of his condition(s)).

> We bring xrays, photos and any " visual aids " that are

> necessary (age appropriate) to help the kids

> understand why they can't touch/push/hit Braydon in

> the back. When they can SEE (via the visual aids)

> what we're lecturing about, it makes more sense to

> them and the remember better (there will always be

> some kids who forget).

>

> After we talk about why its important to give Braydon

> his personal space (and discussing what personal space

> means) we talk about the MANY things he CAN do. We

> let them ask questions about him and what he can and

> can't do (no, tackle soccer is not an option). So

> many things she/they CAN do.

>

> Braydon usually feels confident enough that he will

> take his shirt off and show the kids his back. They

> think the scars are cool. I think this is the biggest

> " seller " for the kids - seeing that his back isn't

> straight and symmetrical like everyone else's. For

> girls, I'm sure this is a more sensitive subject.

>

> We also talk to the teacher before the " show and tell "

> session about code words or things that the other kids

> may feel are " special privileges. For example, we

> worked out a way for Braydon to be able to go to the

> restroom whenever he needed to (neurogenic bladder)

> without getting permission. We also came up with a

> plan to help kids avoid being behind him most the

> time. He is the " sweep " . He is to be last in line

> for anything - leaving the classroom for PE, recess,

> lunch, assemblies, etc. To avoid the negativity of

> being last, he is given some " responsibilities " with

> being the sweep. He turns out the light in the

> classroom, closes the door, makes sure no one is

> behind him, etc. Whatever the age appropriate

> assignment should be. Being the sweep became a

> natural thing for him and his classmates. It was just

> the way the class was. This avoided anyone pushing

> him in the back in lunch line, or coming in from

> recess (when they have to funnel/push through the

> doorways).

>

> We started this when Braydon was in 1st grade. From

> that time on, he had a group of girls who tried to

> " mother " him, especially when they were outside or

> away from the classroom. He hated it, but they made

> sure no one came near him LOL. It was only

> occasionally they would do this, but it kind of

> helped, actually.

>

> We can't put our kids in bubble wrap. They are going

> to have experiences in life that we don't like.

> However, there are ways to make life a little less

> stressful and a little less dangerous for our

> seemingly fragile kids. Braydon has had very few

> negative experiences in school. I think by stressing

> differences (we're all different - some people need

> shots everyday (diabetics), some people wear glasses,

> some people are in a wheelchair, etc.) it helps them

> see how much LIKE them she is. I would ask everyone

> with blue eyes to raise their hand. Everyone with

> black hair... everyone who has had a broken bone...

> everyone who wears glasses... etc. You can customize

> the questions to the class. Point out that not

> everyone raises their hands for every question.

> Everyone is different. That's what makes life fun and

> exciting. etc. etc. etc.

>

> I'm done rambling, I promise. I know you'll do great.

> The biggest thing is to not panic. Olivia picks up

> on your emotions (you know all this). Let her know

> that you will support her 100% and you will help her

> have a fantastic year, because she deserves it.

>

> Let us know how things go.

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

> Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR

> patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib

> anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal

> stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter

> in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant

> surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot

> with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

> discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA,

> etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

> __________________________________________________________

> Looking for a deal? Find great prices on flights and hotels with Yahoo!

> FareChase.

> http://farechase.yahoo.com/

>

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

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news,

photos & more.

[Guest guest]

,

I know this is hard for you.

Although I can relate to Sandi and as far as people not taking

Infantile Scoliosis as something so serious I do NOT agree to leave the word

out.

That is what our children have...........Infantile " Scoliosis " .......right?

I know Olivia is at a hard age where children are at times mean, but I think not

saying " scoliosis " is in a way telling her it is a " bad " word. Plus the

children need to hear it, know it and understand it. Who better than you to

explain it.

It may just be me, but I would have to go against what she wants.

I made a promise to myself that (and his brother)would always be totally

aware and comfortable about having " SCOLIOSIS " . And everything that comes

along with it. Including calling it what it is and explaining to total strangers

what my son has.

I don't mean to sound harsh, but feel very strong about this.

These are and will be very strong children we all have.

Good luck I know you will figure it all out and do what you feel is best for

Olivia.

You always do.

Let us know how it goes,

Tasha

heather@... wrote: Thanks

Carmell, Shellie, Sandi & everyone that responded.

In the past (K thru 3rd grade) I have also met with the teachers,

priciple, school nurse, etc....Anyone directly involved in her care, to

discuss her minimal needs and make sure they are informed.

This year was different. Olivia was adamant that I do not give any sort

of classroom presentation, and that I dont make a big deal over her

condition. I tried to respect these wishes, but 2 days into it, I knew

this was not the best approach.

I wish she could brag about her scars, but that just wont happen. She is

very self conscience about her scars and has already expressed wanting to

cover them with tatoos! Yikes!

She just wants to be a normal little girl. She doesnt even want me to use

the word scoliosis, and in a way, I cant say that I blame her. Scoliosis

is a big, scarey word to people of her age. She prefers that I say that

she has a curve in her back. She wants me to avaid the word scoliosis

altogether.

My thoughts on the presentation, which I will give tomorrow, is completely

different from last year. I think I will mention to the class that most

of us do have some degree of curvature in our backs. Some people have a

little curves, some big, some high, some low, some have 2 curves, some

even 3! And, try to celebrate our differences by using that example. I

will also use the word surgery, instead of scoliosis. (I think...)

I am going back and forth with this whole thing! I dont want Olivia to be

ashamed of her scoliosis, and in some ways by not using the word, I may be

giving her a bad message. I wish she was at the age where she could be

proud of the obstacles she has overcome, and would realize how wonderful

she is doing, considering what she has been through. I certainly dont

want her to think that scoliosis is something to hide or be ashamed

of....But, I am trying to put myself in her shoes, while being realistic,

too.

I need more input from you guys! Please help. Do you think that by not

mentioning the word scoliosis, I am doing her and everyone, including " the

cause " a disservice.

??

H.

> ,

>

> I have lots of thoughts about this... hopefully I can

> consolodate my thoughts so they are understandable.

>

> Braydon and I have always given and " show and tell "

> presentation to his class at the beginning of the

> school year (this is AFTER we've met with any/all

> teachers/administrator in a 504 meeting so the

> teachers/adults are well aware of his condition(s)).

> We bring xrays, photos and any " visual aids " that are

> necessary (age appropriate) to help the kids

> understand why they can't touch/push/hit Braydon in

> the back. When they can SEE (via the visual aids)

> what we're lecturing about, it makes more sense to

> them and the remember better (there will always be

> some kids who forget).

>

> After we talk about why its important to give Braydon

> his personal space (and discussing what personal space

> means) we talk about the MANY things he CAN do. We

> let them ask questions about him and what he can and

> can't do (no, tackle soccer is not an option). So

> many things she/they CAN do.

>

> Braydon usually feels confident enough that he will

> take his shirt off and show the kids his back. They

> think the scars are cool. I think this is the biggest

> " seller " for the kids - seeing that his back isn't

> straight and symmetrical like everyone else's. For

> girls, I'm sure this is a more sensitive subject.

>

> We also talk to the teacher before the " show and tell "

> session about code words or things that the other kids

> may feel are " special privileges. For example, we

> worked out a way for Braydon to be able to go to the

> restroom whenever he needed to (neurogenic bladder)

> without getting permission. We also came up with a

> plan to help kids avoid being behind him most the

> time. He is the " sweep " . He is to be last in line

> for anything - leaving the classroom for PE, recess,

> lunch, assemblies, etc. To avoid the negativity of

> being last, he is given some " responsibilities " with

> being the sweep. He turns out the light in the

> classroom, closes the door, makes sure no one is

> behind him, etc. Whatever the age appropriate

> assignment should be. Being the sweep became a

> natural thing for him and his classmates. It was just

> the way the class was. This avoided anyone pushing

> him in the back in lunch line, or coming in from

> recess (when they have to funnel/push through the

> doorways).

>

> We started this when Braydon was in 1st grade. From

> that time on, he had a group of girls who tried to

> " mother " him, especially when they were outside or

> away from the classroom. He hated it, but they made

> sure no one came near him LOL. It was only

> occasionally they would do this, but it kind of

> helped, actually.

>

> We can't put our kids in bubble wrap. They are going

> to have experiences in life that we don't like.

> However, there are ways to make life a little less

> stressful and a little less dangerous for our

> seemingly fragile kids. Braydon has had very few

> negative experiences in school. I think by stressing

> differences (we're all different - some people need

> shots everyday (diabetics), some people wear glasses,

> some people are in a wheelchair, etc.) it helps them

> see how much LIKE them she is. I would ask everyone

> with blue eyes to raise their hand. Everyone with

> black hair... everyone who has had a broken bone...

> everyone who wears glasses... etc. You can customize

> the questions to the class. Point out that not

> everyone raises their hands for every question.

> Everyone is different. That's what makes life fun and

> exciting. etc. etc. etc.

>

> I'm done rambling, I promise. I know you'll do great.

> The biggest thing is to not panic. Olivia picks up

> on your emotions (you know all this). Let her know

> that you will support her 100% and you will help her

> have a fantastic year, because she deserves it.

>

> Let us know how things go.

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

> Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR

> patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib

> anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal

> stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter

> in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant

> surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot

> with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

> discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA,

> etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

> __________________________________________________________

> Looking for a deal? Find great prices on flights and hotels with Yahoo!

> FareChase.

> http://farechase.yahoo.com/

>

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

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news,

photos & more.

[Guest guest]

This is a toughie, you want to respect Olivia's feelings as it is her body you

are discussing, but I think you would be doing a disservice to her classmates

not to use the word scoliosis. That is what she has. Maybe if you show a list of

" celebrities " with scoliosis that would make it easier for them to understand

that she can do anything they can do! This one even tells what these people do.

Now the only name the kids might know is Yo-Yo Ma and that is because he was on

an episode of " Arthur " , but there are gymnasts, football players, swimmers etc.

http://www.scoliosis-world.com/famous_people_with_scoliosis.htm (who knew Kurt

Cobain had scoliosis?)

http://www.drdonnica.com/celebrities/00006339.htm This one is about a

professional pool player.

heather@... wrote:

Thanks Carmell, Shellie, Sandi & everyone that responded.

In the past (K thru 3rd grade) I have also met with the teachers,

priciple, school nurse, etc....Anyone directly involved in her care, to

discuss her minimal needs and make sure they are informed.

This year was different. Olivia was adamant that I do not give any sort

of classroom presentation, and that I dont make a big deal over her

condition. I tried to respect these wishes, but 2 days into it, I knew

this was not the best approach.

I wish she could brag about her scars, but that just wont happen. She is

very self conscience about her scars and has already expressed wanting to

cover them with tatoos! Yikes!

She just wants to be a normal little girl. She doesnt even want me to use

the word scoliosis, and in a way, I cant say that I blame her. Scoliosis

is a big, scarey word to people of her age. She prefers that I say that

she has a curve in her back. She wants me to avaid the word scoliosis

altogether.

My thoughts on the presentation, which I will give tomorrow, is completely

different from last year. I think I will mention to the class that most

of us do have some degree of curvature in our backs. Some people have a

little curves, some big, some high, some low, some have 2 curves, some

even 3! And, try to celebrate our differences by using that example. I

will also use the word surgery, instead of scoliosis. (I think...)

I am going back and forth with this whole thing! I dont want Olivia to be

ashamed of her scoliosis, and in some ways by not using the word, I may be

giving her a bad message. I wish she was at the age where she could be

proud of the obstacles she has overcome, and would realize how wonderful

she is doing, considering what she has been through. I certainly dont

want her to think that scoliosis is something to hide or be ashamed

of....But, I am trying to put myself in her shoes, while being realistic,

too.

I need more input from you guys! Please help. Do you think that by not

mentioning the word scoliosis, I am doing her and everyone, including " the

cause " a disservice.

??

H.

> ,

>

> I have lots of thoughts about this... hopefully I can

> consolodate my thoughts so they are understandable.

>

> Braydon and I have always given and " show and tell "

> presentation to his class at the beginning of the

> school year (this is AFTER we've met with any/all

> teachers/administrator in a 504 meeting so the

> teachers/adults are well aware of his condition(s)).

> We bring xrays, photos and any " visual aids " that are

> necessary (age appropriate) to help the kids

> understand why they can't touch/push/hit Braydon in

> the back. When they can SEE (via the visual aids)

> what we're lecturing about, it makes more sense to

> them and the remember better (there will always be

> some kids who forget).

>

> After we talk about why its important to give Braydon

> his personal space (and discussing what personal space

> means) we talk about the MANY things he CAN do. We

> let them ask questions about him and what he can and

> can't do (no, tackle soccer is not an option). So

> many things she/they CAN do.

>

> Braydon usually feels confident enough that he will

> take his shirt off and show the kids his back. They

> think the scars are cool. I think this is the biggest

> " seller " for the kids - seeing that his back isn't

> straight and symmetrical like everyone else's. For

> girls, I'm sure this is a more sensitive subject.

>

> We also talk to the teacher before the " show and tell "

> session about code words or things that the other kids

> may feel are " special privileges. For example, we

> worked out a way for Braydon to be able to go to the

> restroom whenever he needed to (neurogenic bladder)

> without getting permission. We also came up with a

> plan to help kids avoid being behind him most the

> time. He is the " sweep " . He is to be last in line

> for anything - leaving the classroom for PE, recess,

> lunch, assemblies, etc. To avoid the negativity of

> being last, he is given some " responsibilities " with

> being the sweep. He turns out the light in the

> classroom, closes the door, makes sure no one is

> behind him, etc. Whatever the age appropriate

> assignment should be. Being the sweep became a

> natural thing for him and his classmates. It was just

> the way the class was. This avoided anyone pushing

> him in the back in lunch line, or coming in from

> recess (when they have to funnel/push through the

> doorways).

>

> We started this when Braydon was in 1st grade. From

> that time on, he had a group of girls who tried to

> " mother " him, especially when they were outside or

> away from the classroom. He hated it, but they made

> sure no one came near him LOL. It was only

> occasionally they would do this, but it kind of

> helped, actually.

>

> We can't put our kids in bubble wrap. They are going

> to have experiences in life that we don't like.

> However, there are ways to make life a little less

> stressful and a little less dangerous for our

> seemingly fragile kids. Braydon has had very few

> negative experiences in school. I think by stressing

> differences (we're all different - some people need

> shots everyday (diabetics), some people wear glasses,

> some people are in a wheelchair, etc.) it helps them

> see how much LIKE them she is. I would ask everyone

> with blue eyes to raise their hand. Everyone with

> black hair... everyone who has had a broken bone...

> everyone who wears glasses... etc. You can customize

> the questions to the class. Point out that not

> everyone raises their hands for every question.

> Everyone is different. That's what makes life fun and

> exciting. etc. etc. etc.

>

> I'm done rambling, I promise. I know you'll do great.

> The biggest thing is to not panic. Olivia picks up

> on your emotions (you know all this). Let her know

> that you will support her 100% and you will help her

> have a fantastic year, because she deserves it.

>

> Let us know how things go.

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

> Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR

> patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib

> anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal

> stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter

> in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant

> surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot

> with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

> discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA,

> etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

>

________________________________________________________________________________\

____

> Looking for a deal? Find great prices on flights and hotels with Yahoo!

> FareChase.

> http://farechase.yahoo.com/

>

[Guest guest]

This is a toughie, you want to respect Olivia's feelings as it is her body you

are discussing, but I think you would be doing a disservice to her classmates

not to use the word scoliosis. That is what she has. Maybe if you show a list of

" celebrities " with scoliosis that would make it easier for them to understand

that she can do anything they can do! This one even tells what these people do.

Now the only name the kids might know is Yo-Yo Ma and that is because he was on

an episode of " Arthur " , but there are gymnasts, football players, swimmers etc.

http://www.scoliosis-world.com/famous_people_with_scoliosis.htm (who knew Kurt

Cobain had scoliosis?)

http://www.drdonnica.com/celebrities/00006339.htm This one is about a

professional pool player.

heather@... wrote:

Thanks Carmell, Shellie, Sandi & everyone that responded.

In the past (K thru 3rd grade) I have also met with the teachers,

priciple, school nurse, etc....Anyone directly involved in her care, to

discuss her minimal needs and make sure they are informed.

This year was different. Olivia was adamant that I do not give any sort

of classroom presentation, and that I dont make a big deal over her

condition. I tried to respect these wishes, but 2 days into it, I knew

this was not the best approach.

I wish she could brag about her scars, but that just wont happen. She is

very self conscience about her scars and has already expressed wanting to

cover them with tatoos! Yikes!

She just wants to be a normal little girl. She doesnt even want me to use

the word scoliosis, and in a way, I cant say that I blame her. Scoliosis

is a big, scarey word to people of her age. She prefers that I say that

she has a curve in her back. She wants me to avaid the word scoliosis

altogether.

My thoughts on the presentation, which I will give tomorrow, is completely

different from last year. I think I will mention to the class that most

of us do have some degree of curvature in our backs. Some people have a

little curves, some big, some high, some low, some have 2 curves, some

even 3! And, try to celebrate our differences by using that example. I

will also use the word surgery, instead of scoliosis. (I think...)

I am going back and forth with this whole thing! I dont want Olivia to be

ashamed of her scoliosis, and in some ways by not using the word, I may be

giving her a bad message. I wish she was at the age where she could be

proud of the obstacles she has overcome, and would realize how wonderful

she is doing, considering what she has been through. I certainly dont

want her to think that scoliosis is something to hide or be ashamed

of....But, I am trying to put myself in her shoes, while being realistic,

too.

I need more input from you guys! Please help. Do you think that by not

mentioning the word scoliosis, I am doing her and everyone, including " the

cause " a disservice.

??

H.

> ,

>

> I have lots of thoughts about this... hopefully I can

> consolodate my thoughts so they are understandable.

>

> Braydon and I have always given and " show and tell "

> presentation to his class at the beginning of the

> school year (this is AFTER we've met with any/all

> teachers/administrator in a 504 meeting so the

> teachers/adults are well aware of his condition(s)).

> We bring xrays, photos and any " visual aids " that are

> necessary (age appropriate) to help the kids

> understand why they can't touch/push/hit Braydon in

> the back. When they can SEE (via the visual aids)

> what we're lecturing about, it makes more sense to

> them and the remember better (there will always be

> some kids who forget).

>

> After we talk about why its important to give Braydon

> his personal space (and discussing what personal space

> means) we talk about the MANY things he CAN do. We

> let them ask questions about him and what he can and

> can't do (no, tackle soccer is not an option). So

> many things she/they CAN do.

>

> Braydon usually feels confident enough that he will

> take his shirt off and show the kids his back. They

> think the scars are cool. I think this is the biggest

> " seller " for the kids - seeing that his back isn't

> straight and symmetrical like everyone else's. For

> girls, I'm sure this is a more sensitive subject.

>

> We also talk to the teacher before the " show and tell "

> session about code words or things that the other kids

> may feel are " special privileges. For example, we

> worked out a way for Braydon to be able to go to the

> restroom whenever he needed to (neurogenic bladder)

> without getting permission. We also came up with a

> plan to help kids avoid being behind him most the

> time. He is the " sweep " . He is to be last in line

> for anything - leaving the classroom for PE, recess,

> lunch, assemblies, etc. To avoid the negativity of

> being last, he is given some " responsibilities " with

> being the sweep. He turns out the light in the

> classroom, closes the door, makes sure no one is

> behind him, etc. Whatever the age appropriate

> assignment should be. Being the sweep became a

> natural thing for him and his classmates. It was just

> the way the class was. This avoided anyone pushing

> him in the back in lunch line, or coming in from

> recess (when they have to funnel/push through the

> doorways).

>

> We started this when Braydon was in 1st grade. From

> that time on, he had a group of girls who tried to

> " mother " him, especially when they were outside or

> away from the classroom. He hated it, but they made

> sure no one came near him LOL. It was only

> occasionally they would do this, but it kind of

> helped, actually.

>

> We can't put our kids in bubble wrap. They are going

> to have experiences in life that we don't like.

> However, there are ways to make life a little less

> stressful and a little less dangerous for our

> seemingly fragile kids. Braydon has had very few

> negative experiences in school. I think by stressing

> differences (we're all different - some people need

> shots everyday (diabetics), some people wear glasses,

> some people are in a wheelchair, etc.) it helps them

> see how much LIKE them she is. I would ask everyone

> with blue eyes to raise their hand. Everyone with

> black hair... everyone who has had a broken bone...

> everyone who wears glasses... etc. You can customize

> the questions to the class. Point out that not

> everyone raises their hands for every question.

> Everyone is different. That's what makes life fun and

> exciting. etc. etc. etc.

>

> I'm done rambling, I promise. I know you'll do great.

> The biggest thing is to not panic. Olivia picks up

> on your emotions (you know all this). Let her know

> that you will support her 100% and you will help her

> have a fantastic year, because she deserves it.

>

> Let us know how things go.

> Carmell

>

>

>

>

> Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

> Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR

> patient #137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib

> anomalies, missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal

> stenosis, chronic constipation, horseshoe (cross-fused) kidney, dbl ureter

> in left kidney, ureterocele (excized 6/95), kidney reflux (reimplant

> surgery 1/97), neurogenic bladder, dysplastic right leg w/right clubfoot

> with 8 toes (repaired 2/96, 3/96, 1/97, 3/04), tibial torsion, 4cm length

> discrepancy-wears 3cm lift, valgus deformity, GERD, Gastroparesis, SUA,

> etc. http://carmellb-ivil.tripod.com/myfamily/

>

> Congenital scoliosis support group

> http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

>

>

>

>

________________________________________________________________________________\

____

> Looking for a deal? Find great prices on flights and hotels with Yahoo!

> FareChase.

> http://farechase.yahoo.com/

>

[Guest guest]

,

You'll do great. When we did Braydon's show-and-tell

presentations (that word sounds much more formal than

the actual event, but you know) we didn't say

scoliosis. We talked about him having back surgery,

and that his back was curved, and that his back needs

more surgery to stay healthy, etc - just like you've

suggested. Scoliosis means nothing to most people,

and its such a broad/generic term anyway.

Does Olivia have a 504 plan? If not, I STRONGLY

suggest you get one. It is a FEDERAL law that all

public schools must provide equal education for anyone

with physical needs. This helped so much. Every

teacher, counselor, school nurse, and administrator

who would ever be in contact with her during the

school day needs to attend this meeting. We used to

do 504 mtgs without Braydon there, but the last one we

did, Braydon came to the meeting. The teachers were

able to ask HIM what he thinks would be helpful in

their classroom - ie, if he needs to have a desk on

the BACK row of the class, near the door, for an early

out; if he would prefer sitting in the front of the

class; if he needs a pillow on the back of his chair;

if he needs to stand at the back of the room to

stretch his back during lecture times; if he needs to

kneel instead of sit cross-legged in the back of the

group during story time; what would be a good code for

using the bathroom; etc. Because HE made those

choices, he felt more confident and more in control of

something about his body. We also showed the 504

group his xrays. For Braydon, this was a good thing.

A 504 plan only works well when the administration and

teachers are fully supportive of it. Hopefully your

school understands how they work and what kids need to

have a successful and positive experience in school.

Good luck. If I think of anything else, I'll let you

know. Everyone else has had great ideas too. Good

work everyone.

Carmell

Mom to Kara, idiopathic scoliosis and hypothyroidism, Blake 17, GERD, and

Braydon 12, VACTERL-congenital scoliosis (fusion surgery 5/96), VEPTR patient

#137 (implant 8/01), Thoracic Insufficiency Syndrome (TIS), rib anomalies,

missing coccyx, fatty filum/TC (released 4/99 & 12/06), anal stenosis, chronic

constipation, horseshoe (cross-fused) kidney, dbl ureter in left kidney,

ureterocele (excized 6/95), kidney reflux (reimplant surgery 1/97), neurogenic

bladder, dysplastic right leg w/right clubfoot with 8 toes (repaired 2/96, 3/96,

1/97, 3/04), tibial torsion, 4cm length discrepancy-wears 3cm lift, valgus

deformity, GERD, Gastroparesis, SUA, etc.

http://carmellb-ivil.tripod.com/myfamily/

Congenital scoliosis support group

http://health.groups.yahoo.com/group/CongenitalScoliosisSupport/

________________________________________________________________________________\

____

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