Re: Re: Starting School

[Guest guest]

do you all have the blue RSS panflit it really help at my school and then

document from my doctors helped too

cara mom to jacob

re_1wiily wrote:

Hi Jodi -

I really wish I could help but this is the very problem that we're

having with in his junior kindergarten year. Just last week

I posted looking for help with IEP suggestions. The school and we are

at a complete loss as to what to say and do about needs

(size aside). I have yet to find a really consise document that

explains to others the nature of RSS and the possible behaviours,

needs and 'problems' that might be exhibited. Recognizing that

despite the commonalities our kids can have very different needs

(Will is not on a feeding tube) Debbie B. responded to my query with

some great ideas that maybe you could benefit from (it was 1-2 weeks

ago). Hopefully any info that comes your way today will hopefully

serve us as well. Thanks for the great question.

Charlene, mom to , Ontario

>

> Hi

> We have just started the long daunting task of getting Liam

enrolled

> for school next year.

> It is early but I think we are going to need the time to get

> everything in place.

> I need as much info as I can get from those who have done this.

> Australia is going to be different from America in funding etc, but

> Im hoping the basic info to give out will be the same.

> Liam will need to be tube fed at the moment he has 3 feeds a day

> through his pump, so he would need at least 2 at school.

> He is also still in Nappies(diapers) due to his chronic

constipation

> problems and inability to control his bowel, this may be rectified

> with further diagnosis this year but I still have to plan for it.

> I am finding it very difficult to put together info for the school.

> I would like to use the Magic information but most of it is for

> parents and the whole phenotype/ genotype thing at the beginning is

> just confusing. Does anyone have a concise facts only description

of

> RSS?

> What other issues need to be brought up??

> Hope someone gets what Im looking for here?

> Any letters to schools or good resources would be appreciated.

> Maybe this is something we could start a file on.

> Thanks

> Jody

>