Re: Re: School Letter / Handout-- Debby hay girl

[Guest guest]

debby

you have a way with words. i had some of the same though not taking anything

from you but i did not think in suck leanth

here is a funny to add my son is 7 and this year at school he needs snacks at

school two time a day i though he would go to the lunch room of office and do

it. but his teacher gave him his snack in the classroom i bet some parents will

be talking now

but i left the teacher and princible with lots of info for why and he has a 504

for it so hopfully it will blow over

cara mom to jacob

" Debby B. " wrote:

Leah

Thanks for the quick explanation of OI. I do remember, as I said, you

explaining it in Chicago, but my mind got left there I think! LOL

Now in between watching the Olympics (how nice we are doing slightly better

now eh?) I was thinking about your letter. Being a teacher and a parent I

was wondering if you might consider skipping the RSS part of your letter. In

other words don't overload the parents with information. Olivia is an

absolutely adorable child but if she has a huge list of various medical

conditions sent home in a letter to parents it may overwhelm many of the

less educated (if you know what I mean). I think the OI is crucial. Oh

before I go further, is the school OK with you sending home a letter? They

would probably be a good source for guidance.

OK so as I was saying, I would stick to the OI. There are really no crucial

medical issues with the RSS and if you wanted to explain why she eats

frequently, I would just leave it under the OI " to help her grow bigger " . No

one plans to submit your letter to a medical authority for verification, so

I would just make it simple.

One thing (thinking as a parent) you might add in the letter is something

like " I would so love to be invited to your birthday parties, please don't

be afraid to invite me, my mom can/will come as well so you don't need to be

considered " . I'm just thinking that as a parent I might be afraid to have a

child with such needs come over without fully understanding the implications

of OI and for the sheer thought of how awful I would feel if something did

happen to the child. But if, as a parent, I knew in advance that this was OK

or that a parent would be there to take responsibility I would certainly

welcome her (again I'm thinking of this as one parent having a bunch of 4-5

year olds running around---I'm not saying that I wouldn't want Olivia to my

home, I can handle all of that with my eyes closed, but I'm just thinking

generally........does that make sense?).

I would start with a rough draft and write everything out that you can think

of that you would want in the letter. And then start to fine tune it (fewer

words, simpler explanations etc.) until you get to a good final copy. You

could always post it here for us to pick at! LOL

Now as for worrying about the negative part of this.............the

kids/parents centering her out. I guess the first thing to remember is her

safety comes first. This needs to be done ( just curious, did your husband's

parents do anything like that? you might have a good source of " been

there/done that " information from them)...........anyway, you need to make

people aware of Olivia's safety needs first and foremost. Besides I think it

would be much more beneficial, socially, for everyone to be fully aware and

then it's not like it's a big secret where staff run at a kid yelling " put

her down " and no explanation is given. If it did happen, others would say

" oh yeh, it's because........... " and it wouldn't be so upsetting. I feel

like I'm rambling here.

Also, if anything, having the parents knowledgeable at this stage would help

make everyone more comfortable. I think the birthday party example is a good

one for this too. Finally, are they going to point her out/stare at her?

Well Leah in all honesty that's going to happen whether you do anything or

not. First she is so beautiful they are going to look and yes, she is very

tiny.........I remember when Adam was in JK (and he attended the school I

taught at) I had a few parents come to me and say " gee it must be nice to

get free day care for your 2 year old because you work here " . I was livid I

went nuts and even got Adam's birth certificate out for one nasty parent to

prove he was " of age " to be in the kindergarten.........his teacher told me

all the parents talked about how small he was on a daily basis as they all

stood around outside. It is going to happen, but if these people are " in the

know " it might not be such a big deal or it will blow over quickly.

Anyway, thought I'd give you my rambling thoughts. Back to the Olympics (see

if I can send telepathic urgings for our athletes to get more medals! LOL)

Debby

Re: School Letter / Handout-- Debby

>

> Hi Debby,

> OI is the Brittle Bone Disease. Their bones can break from little

> or no cause. Jostling in a crowd could break arms, a fall could

> mean a skull fracture (any bone can break with a fall), pulling

> could dislocate any joint, etc. For example my husband broke his

> arm rolling over in the crib and broke both legs when he tripped

> over a pillow. Pretty much anything can cause a break with any

> child but with OI the kids are just that much more fragile, getting

> her foot stepped on could break bones in her foot. We really want

> to stress that Olivia is not to be picked up since she's been having

> rib and vertebra fractures, either of these could lead to a

> catastrophic injury. On the other hand we don't want her to be

> ostrasized (sp) or the kids scared of her... this is where we are

> on the fence. One good thing is that Olivia has been to the school

> twice a day for 4 years dropping off and picking up so she's

> already very well known and a celebrity of sorts since the kids are

> very drawn to her but they aren't educated on her issues.

> We're really concentrating on " self awarness " this year with her.

> The aide will help Olivia make decisions about waiting for the rush

> of kids to clear the entry before she goes outside, etc.

>

> Hope this explains it a bit better, if not let me know!

> Leah

>

>

>

>

>

> > >

> > > Hello to all,

> > >

> > > We're in a bit of a quandry right now as to weather or not

> send a

> > > handout home with the kids in Olivia's school. While it will

> have

> > > RSS in it and the reason why she's small, it will also contain

> info

> > > about Osteo Genesis Imperfecta. It will make them aware of

> Olivia

> > > (hopefully) and reinforce that we don't pick-up, push, pull,

> > > trample, etc, our friends. Many of the people in my OI Group do

> > > this for their kids and it's written from the viewpoint of the

> > > child, ie: " I like to play all of the same games as other girls

> my

> > > age " , " My phone number is ____ if you have any questions you can

> ask

> > > my Mom or Dad " , " I need to snack often because " , " It's not your

> > > fault if I break " etc.

> > >

> > > I will be joining Olivia's class in the first week of school

> and

> > > explaining to them why Olivia needs to snack and why she's

> smaller

> > > than they are but the psycologist (sp) at her last case meeting

> is

> > > more concerned with the parents of the other kids grilling their

> > > kids when they get home about the toddler in the class and those

> > > kids then thinking that something is wrong with her. This would

> > > also let the rest of the school be informed about her. Some

> parents

> > > include a photo of their child on the handout, I guess it's the

> > > easiest way to recognize her but it feels weird like everyone

> will

> > > be " looking " for her...

> > >

> > >

> > > So my question for all of you is... Would this be truly

> positive

> > > for Olivia or would she then be labeled as very different and a

> kid

> > > to stay away from?

> > >

> > > Her safety is very important to us but it also feels like

> we're

> > > singling her out from the rest.

> > >

> > > Any and all comments are greatly appreciated, both positive

> and

> > > negative, so that we can make the best decision for Olivia.

> > >

> > > Thanks!

> > > Leah, mom to 9yrs and Olivia 4.75 yrs, 18lbs, 33 " , RSS,

> OI,

> > > tons of meds.

> > >

> > >

> > >