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Hi everyone,

Our son is going to be 3 in October and we are going though the prosess of

the IEP and they are going to do some test I guess to see were needs the

help the most. But the problem is that with the way his birthday falls they are

saying that he will be in the 3 year old programs for 2 years. The class is 2

days a week and I don't know if that is enough for him. He is not used to being

around kids his own age until just recentally and I think he needs something

more routine like everyday but they don't provide that at his age. I guess the

big problems is that he still has a binky and they are saying that he will not

be able to bring it to class. We have been trying to get rid of it for a year

now with no sucess. I am afraid that we will not be able to handle it with out

it. They are trying to say that needs Special Education but I don't think

that he does, he is behind but I think that is due all of his medical problems.

He can count to 7 with no problem an!

d can say his abc's of you say the letter first then he will say it. But most

of all he has this toy music box and he is already trying to sing with it. He

does't know all the words of course but the ones he does know he sing with the

music. If someone could give me some advice I would appreate it and thank you

for the help in advance.

Your Friend,

Kerry &

Parents to

almost 3 CHaRGEr

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In a message dated 9/16/99 7:24:03 PM Eastern Daylight Time,

Tim.Hartshorne@... writes:

<< Children with sensory impairments need a consistent program. If the

child is deafblind they need a continual program. Best practices would

say they need a 24 hour a day program. >>

Tim,

Do you have documentation on this? It could come in handy at an IEPC. I

do believe this and have seen results when Mark has had a break in

programing. If you want to see improvements and developmental gains this is

a must. I'm with you on this one :)

V.

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Children with sensory impairments need a consistent program. If the

child is deafblind they need a continual program. Best practices would

say they need a 24 hour a day program. We used that arguement when we

got in a full day program when he was 2. We also used it to allow

him to attend both sections of kindergarten so he went five days a week.

The binky issue is rediculous, but it is one of those " conventional

wisdom " things some educators buy into and use to keep younger children

out of school. I would point out that your son needs it in order to get

as much stimulation as possible, given sensory problems.

Tim Hartshorne

queenbee74@... wrote:

>

> From: queenbee74@...

>

> Hi everyone,

>

> Our son is going to be 3 in October and we are going though the prosess

of the IEP and they are going to do some test I guess to see were needs the

help the most. But the problem is that with the way his birthday falls they are

saying that he will be in the 3 year old programs for 2 years. The class is 2

days a week and I don't know if that is enough for him. He is not used to being

around kids his own age until just recentally and I think he needs something

more routine like everyday but they don't provide that at his age. I guess the

big problems is that he still has a binky and they are saying that he will not

be able to bring it to class. We have been trying to get rid of it for a year

now with no sucess. I am afraid that we will not be able to handle it with out

it. They are trying to say that needs Special Education but I don't think

that he does, he is behind but I think that is due all of his medical problems.

He can count to 7 with no problem an!

> d can say his abc's of you say the letter first then he will say it. But most

of all he has this toy music box and he is already trying to sing with it. He

does't know all the words of course but the ones he does know he sing with the

music. If someone could give me some advice I would appreate it and thank you

for the help in advance.

>

> Your Friend,

>

> Kerry &

> Parents to

> almost 3 CHaRGEr

>

> ---------------------------

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School I need HELP

Hi:

What is a binky? Is that an American name for a soother?

What are vision and hearing concerns again. Sorry, it is

hard to keep everyone straight!

When consideration of his needs are being looked at, I feel that the

social benefit should only be one piece of the puzzle. How will they

incorporate a program to enhance his residual senses and perception...will

they work directly one on one with some visual and auditory activities?

Does he integrate the senses (ie. can he touch and look at the same time or

listen and see? Watch when he plays with a visual/auditory toy, how does he

explore it?) ...Will he need some work on sensory integration with

specified activities for his needs? How is the tactile sense? Will he be a

print or braille user and so what skills will he need to develop...hand

tracking and tactile awareness? visual tracking and discrimination?

How is his gross motor development? Will they need some one-on-one

help to help him explore and move through equipment, climb, roll, scoot down

a block of plastic boxes, rock on tramp, jump on tramp? How is his upper

body strength? Will he need work on bearing weight with his hands in

crawling through forms, and raised tubes? Will he need physio. for any

specific areas? Will he benefit from time in a therapy pool or from the

freedom being in the water can bring? How is his vestibular system? Will

he need rocking boards, hammock, theraputic riding on horse, towel swinging

with two helpers, one on one help out on the playground round-a-bout with

someone to stop/start the action and have him react and ask for " more? "

How is his fine motor development? Can he put pegs in a row or feel

the spaces with two hands? Can he bend his finger didgets separate of

eachother and press each into dough or will he need one on one help to know

to do this? Will he grasp with his palm or use a pincer grip when picking

up objects? Can he use good grip to hold things that are meaningful in his

environment during routine activity? Will he look at the paper when doing

finger painting or pudding painting or will he need one on one to help him

focus and " touch and look " . Can he use a touch window on the computer to

create " cause and effect " on simple switch visual programs? Can he operate

the buttons/switches on his stereo or tape player, toaster, or " cause and

effect toys " ?

How is he effectively communicating wants, needs, and directing his

environment by his actions? Does he push/pull?Gesture?Sign?Speak? Is his

speech clear or will he need speech therapy? Will he understand his

environment and all that is around him in the class by scanning for visual

cues?or will he need someone close to help interpret the partial

information, motivate him to move about and explore, and give him feedback

on his interactions with toys, kids, equipment, etc.

Will he be able to understand representational concepts without someone

to help make the connections for him? Does he understand objects and their

relationship to their meaning? Can he label objects in function, sign,

speech? Can he put puzzles together visually or will he need some one hand

over hand to show what is required? Can he group toys in the correct place

when they say, " Put the toys away now " or will someone hand-over-hand show

him the meaning of classification. Will he explore books and pictures for

their meaning or will he need someone to help him focus on them, find the

front, help him turn the pages, find the letters you speak to him, etc...Can

he recognize himself in pictures? Other familiar people? Activities? What

about symbols of pictures or drawings...? Will he know that the " brush and

paint picture " is where he goes to paint or will he need someone hand over

hand to feel the paint center and direct him? Can he label things in his

environment outdoors in sign, speech word? Does he know about the library,

park, pool, train station, music store, fabric store, grocery store,

candy store, hardware store, lighting store or will he need to visit with

someone to help him explore and sign/label things, get an idea of the

sights/sounds to be found there?

Does he understand that by his actions things can change in the

environment? Does he have an awareness of " self " as separate from others?

Does he actively explore or hypoactively withdraw? Does he have self

motivation to learn for the sake of knowing as he moves through the

environment? Does he know what body parts you are touching and can name

them?....match another child's parts to his?... Point to the correct body

parts in a drawing of himself or match them? Is he aware of the play of

others beside him or does he need one-on-one to show him what other children

are doing " over there " . Can he contribute to the whole of a project, like

help build the tower or put the trains of the track with " " or will he

need a guiding hand to help him lift them to the correct spot to be beside

" 's " . Can he express frustration, anger, saddness with a sign or

functional speech sound? Can he match a picture of an emotion to how he is

feeling? Can he read the emotions or tone of voice, facial expressions of

others or will he need a guiding hand to help him interpret?

Can he dress himself? Pull up his socks? Put his shoes on? Does he

know he needs to go get his coat to line up for outside? Is he aware when

his diaper is being changed and helps hold it, lift his bottom? Can he

express that he is wet? Can he help carry his change of clothes? Is he

aware other children use the toilet or can he sit on it taking turns? Does

he need oral therapy for eating preparation or stimulation to help with

chewing skills? Can he hold utensils or finger food? Does he know his

place at snack time or will one on one help get him there? Will he know

where the cups are and help the teacher get them? Can he wipe his mouth and

the table or will he need hand over hand to help him do this?

Will he find the areas of the classroom as needed on his own? Will he

know where the scissors, crayons, music, paper can be found? Will he find

his place in the circle at circle time or will a guiding hand take him

there? Will he find the sandbox once outside? Can he move the trucks about

the path the children have made or will he need someone to show him the

direction?

Having a hand 1+1 is needed? " Intervention " ? Or someone to help

interpret what the teacher says, what is important? Or will

gain from " being " in a room with lots of sounds, sights, and use his vision

to get all the information as his main sense to compensate for his hearing?

Or use his hearing to get all the infomation to compensate for his vision?

How will the fatique factor affect him? Extra effort needed to hear?

Strain and lots of visual stimulation overpower? Does he nap usually in

afternoon? How does he handle crowds...does his nuerological system adjust?

Can it and his vestibular system cope with movement/action on a day to day

basis? Does he function by routine to know what will happen in his

envioronment or can he make choices with language or respond to language to

help guide him, especially when there are changes in routine?

Lots to think about. Hope this helps.

Ann Gloyn, Deafblind Specialist Teacher, Canada

(now in the Unit for Visual Impaiment/Learning Disability by the way!)

> From: queenbee74@...

>

> Hi everyone,

>

>

> Our son is going to be 3 in October and we are going though the

prosess of the IEP and they are going to do some test I guess to see were

needs the help the most. But the problem is that with the way his

birthday falls they are saying that he will be in the 3 year old programs

for 2 years. The class is 2 days a week and I don't know if that is enough

for him

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Hi,

> What is a binky? Is that an American name for a soother?

Don't know if anyone answered the binky question yet, but a binky is a

pacifier. Is that what a soother is?

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

& Ed Vaughn

Maddie-CHARgE-12, Philip-10

bibovaughn@...

ICQ #11128396

Indiana

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

Re: School I need HELP

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,

Glad to hear Bart is enjoying school. Dr. Blake told me this week she

thinks Kennedy should be in a good 2 yr preschool program at 3 yrs of age. I've

gotta tell you I can't imagine it, I'm really over-protective of her. I haven't

even let anyone babysit her yet other than my mom here and there. That was the

other thing Dr. Blake said I have to do, get some time away from Kennedy, both

for her and for us. Guess I " ll have to look into the respite thing a little

more now. Yikes!

I believe IEP is Individual Education Plan - I think that's mostly American,

I'm not sure if that is what we use here in Canada or not. I'll find out soon

enough I guess!

Mom to Kennedy 19 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

Hi Kerry & ,

My son just had his birthday (1-8) and is now also 3 years old. He went to

the little children school about half year ago (I don't know the english word

for that school, it isn't really a school, it's just playing and learning to

play with other children). It is also two mornings in a week. Bart really loves

it. In the beginning, he didn't noticed the other children, because of his bad

vision, but after the operation he can see so much better, and now he plays on

his own special way with the other children. Every time a parent has to help the

teacher, and I helped now for 2 times, I can see the difference in his play. But

I also see that he is absolutely not like the others, but all the other kids

love him, specially the girls are font of him.

We are now looking for a " big children " school, next schoolyear he has to

go. And there are waiting lists for certain schools. We want to put him on a

normal school, we don't see any reason for not doing that. But I think that here

in Holland it is a lot different from the usa.

BTW what does IEP mean, it has something to do with education, but I don't

know what it is.

Love,

(monique@...)

Mom of Bart (1-8-96, charge) and Siebe (3-9-98/3-9-98, HLHS)

----------

Van: queenbee74@...[sMTP:queenbee74@...]

Verzonden: donderdag 16 september 1999 21:25

Aan: Charge Syndrome

Onderwerp: School I need HELP

From: queenbee74@...

Hi everyone,

Our son is going to be 3 in October and we are going though the

prosess of the IEP and they are going to do some test I guess to see were

needs the help the most. But the problem is that with the way his birthday

falls they are saying that he will be in the 3 year old programs for 2 years.

The class is 2 days a week and I don't know if that is enough for him. He is

not used to being around kids his own age until just recentally and I think he

needs something more routine like everyday but they don't provide that at his

age. I guess the big problems is that he still has a binky and they are saying

that he will not be able to bring it to class. We have been trying to get rid

of it for a year now with no sucess. I am afraid that we will not be able to

handle it with out it. They are trying to say that needs Special Education

but I don't think that he does, he is behind but I think that is due all of his

medical problems. He can count to 7 with no problem an!

!

d can say his abc's of you say the letter first then he will say it.

But most of all he has this toy music box and he is already trying to sing with

it. He does't know all the words of course but the ones he does know he sing

with the music. If someone could give me some advice I would appreate it and

thank you for the help in advance.

Your Friend,

Kerry &

Parents to

almost 3 CHaRGEr

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

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Hi ,

I feel the same way you do. The boys are starting a 5day a week, full-day

program in January and I am alittle hesitate. The school and therapist told

me it would be the best for the boys and I know they are right but I am a bit

FREAKED!!! To send three year olds to school when I myself have been the

only one with them the past 21/2 years. Well I will let you know in January

how it goes. When would Kennedy be starting? I think it is much harder for

us, the parents, then our kids. Afterall, we are always saying that nobody

can do the job like us. That will always be true but I guess we have to try

to let others take a more active role especially if it is for our child's

best interest.

Murray

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,

Kennedy will be 3 in 2001. She was born January 27th/98. So, I have a

little breathing room.

Mom to Kennedy 19 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>From: Jayem14@...

>

>Hi ,

>I feel the same way you do. The boys are starting a 5day a week, full-day

>program in January and I am alittle hesitate. The school and therapist

told

>me it would be the best for the boys and I know they are right but I am a

bit

>FREAKED!!! To send three year olds to school when I myself have been the

>only one with them the past 21/2 years. Well I will let you know in

January

>how it goes. When would Kennedy be starting? I think it is much harder

for

>us, the parents, then our kids. Afterall, we are always saying that nobody

>can do the job like us. That will always be true but I guess we have to

try

>to let others take a more active role especially if it is for our child's

>best interest.

> Murray

>

>

>>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

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