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Re: FM out of school

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No doubt!

> Aaaah, Kim, this gave me such a feelgood grin. I am really pleased for

> Dylan and I am sure you are breathing a sigh of relief.

>

> Flo

>

>

>>

> Well it turns out that this teacher is phenomenal!!!!!!!!!!!! Dylan is

> being included in the class flow like any other kid. He is learning to

> imitate the others during games, learned a new calendar system that used

> different colors of ribbon to represent the different days of the week,

> matched with a box with that color ribbon for the cues for that day, and a

> lanyard of that ribbon to hang the cues on. For the first time he is having

> conversations about yesterday, today, tomorrow; days of the week; weekend,

> vacation....... He is doing science experiments. He is working on getting

> the concept of names with the kids in class during circle time..... Of

> course it has a lot to do with the state he is in right now; engaged with

> the world and like a sponge; with Doe having years of experience with Dylan

> and then coming to the CHARGE conference where she learned so much, then

> came back with tons of ideas on how she could adapt different things for

> Dylan, but the big difference to me is the teacher. Without her - as much

> as Dylan was ready to take off and Doe had great ideas to implement - there

> would have just been frustration at knowing he could learn and do more. The

> teacher's set up of the classroom, expectations for Dylan, calmness with

> kids making messes while they learn, making the environmental accommodations

> Dylan needs and so on is the difference between doing okay and awesome! The

> IEP did not change, the teacher changed! The IEP was being met before, but

> Dylan is learning now.

>

>

>

>

>

> Membership of this email support groups does not constitute membership in the

> CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca, or

> email info@....

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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Belinda-

Aubrie is beginning to notice that she's different and wanting to hide

it. This is all just beginning. I'm afraid this will be a challenging

year as far as that goes. I hope she doesn't fight the things that help

her even if they do make her appear different. With the FM, it helps

that now they are wireless. I wouldn't want to wear that big ol'

strapped on contraption either!

Michele W

Belinda wrote:

> Michele, i remember my calisthenics teacher wearing the fm a few

> times, but

> i use to be really embarressed about wearing it, i never hardly wore it

> really

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Michele,

As you can see I am getting caught up here. I know before we had

's FM, we were in battle with the school. One thing our

attorney said at an IEP meeting when we were talking about us using

the FM at home was that the child's education does not stop when

school gets out therefore the FM should be available to Jess at home

as well as school. He brought up that the school supplies books for

all students to learn. They are not required to leave them at home

and parents purchase a second set themselves for the children to do

their homework. Same is true for the FM. It is nothing more than a

" text book " that she uses for learning and she should be able to use

it at home as well. I think he also cited some court case to all of

that.

As for the aide, it sounds reasonable to word the IEP that Aubrie

would have a school provided aide for any school related activities

she participates in. I don't have any support for this, but it only

makes sense to me.

Sheryl

Oh, I will reply to your private email as soon as I get through all of

my CHARGE messages :)

> Does anybody have the school FM available to be used at

extracurricular

> activities that are not school-sponsored? Last year, we were

spoiled

> because we had our own FM system that we let the school use during

the

> day. We lost her aids and now the new ones are not compatible with

the

> old FM system. So... we could spend $800 of our own money to get

the

> additional equipment.... but it seems that the school could loan

their

> FM for soccer practice, church youth group, dance lessons, and

scouts.

> These are the noisy environments when she needs that extra link to

the

> instructor. Has anyone had success in getting this for their

child??

>

> What about an aide at any of these non-school functions??? What

about

> an aide at school events -- like the cheerleading camp our

cheerleaders

> are putting on or the extra art camp the high school teacher does

for

> the elementary kids?? Does your IEP include community things like

> scouts, church groups, sports, dance???

>

> Thanks in advance for any input.

>

> Michele W

> Aubrie's mom 7 yrs entering 2nd grade -- IEP on Monday afternoon

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Michele,

Is there a parent advocate in your area that can attend the meeting

with you? Our AEA has a parent advocate and I did use her to attend

some meetings with me when we were at our local school district. She

has to remain somewhat neutral but her emotional detachment sure

helped me make my point more clear at times.

I'm joining you in the IEP whirlwind. There has been an emergency IEP

meeting called for Wednesday morning to discuss 's placement.

I can't remember if the date was set the last time we talked. I have

so much to do and so many things I need to get down on paper so I

don't forget to bring up those points and my procrastination has set

in (it's my task avoidance skill).

Anyway, good luck with your meeting. Hope you can get someone to go

with you.

Sheryl

>

> > Basically if it fits in the IEP, all things are possible.

> > Some districts are more accomodating with FMs than others. I have

> > heard of

> > one family who basically said if you don't let us use the FM unit

for home

> > life, then we will not let you use the aides for school life and

you will

> > need to buy your own.

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Kim,

That is so awesome! I am hopeful that we will find people who get it

soon for .

Sheryl

> >

> >> Basically if it fits in the IEP, all things are possible.

> >> Some districts are more accomodating with FMs than others. I have

> >> heard of

> >> one family who basically said if you don't let us use the FM unit

for home

> >> life, then we will not let you use the aides for school life and

you will

> >> need to buy your own.

> >

> >

> >

> >

> >

> > Membership of this email support groups does not constitute

membership in the

> > CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> > For information about the CHARGE Syndrome

> > Foundation or to become a member (and get the newsletter),

> > please contact marion@c... or visit

> > the web site at http://www.chargesyndrome.org. For CHARGE Syndrome

Canada

> > information and membership, please visit

http://www.chargesyndrome.ca, or

> > email info@c...

> > 8th International

> > CHARGE Syndrome Conference, July, 2007. Information will be

available at

> > www.chargesyndrome.org or by calling 1-.

> >

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Sheryl-

No, there is no one available to go. But if I meet with resistance I'll

be on the phone again looking for other sources of support -- and

checking to see who this gal can help me further. After the June IEP, I

made several calls to different agencies and this is the only one that

returned my call. So I could re-call those other folks and be more

persistent. I have forgotten to contact all of the different deaf

advocacy groups. Duh.

I hope your meeting goes ok. I've been worried about you. Let me know

how it goes.

I share your procrastination trait. In part it's avoidance, in part

it's just an overwhelming schedule, and in part it's waiting til the

last minute to include all the info. I just spoke at length with the

deafblind specialist last night!

Hang in there-

Michele W

>

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