school for kids with CHARGE

[Guest guest]

my daughter is now in our district in a self contained 6-1-1 class, with her

own 1 - 1 nurse.

used to be in a Special Ed School for her first 3 years, but they did

not see her " potential " or challenge her enough. I looked into a school for

the deaf, and am currently pursuing, however, they will not take

because she has to many " other " needs. So my district has brought in a Teacher

for

the Deaf, who works with 1 hour a day, along with s other

services she receives, PT, OT, Speech and Vision.

The only perfect school I see is in Boston, and that is not possible, at

this point, Perkins School for the deaf, their deafblind program.

I think the schooling issues are a major issue with a lot of our kids, as

there is not a lot experienced people out their w/CHARGE. There are lots of

programs for Deaf children, CP kids, Down Syndrome, Autism, etc.

our kids a lot of issues that make it so complicated. I hear this as one of

the biggest concerns with just about every CHARGE parent I know.

Cathie, mom to almost 12

************************************** See what's free at http://www.aol.com.

[Guest guest]

Joanne,

is still in diapers and tube fed as well. We did however, go to

Perkins to have an evaluation over a 2 day period a few months ago. We are

hoping

their evaluation and recommendations are implemented into her program. TO go

their for an evaluation is well worth the time, and you can probably get

your district to pay for it, Ours did.

Cathie

************************************** See what's free at http://www.aol.com.

[Guest guest]

I am trying to get a senses of what type of school your children

attend...how many kids go to regular schools, how many to deaf

schools, how many to schools with autistic kids, apraxia...

Barbara

[Guest guest]

tim attends lake drive school for the deaf and hard of hearing, for the last 4

years before that he was in an inlusion class for 3 yrs pre-k, kind, and first

grade. but he lost more hearing and was falling behind--further than he already

was, which is why we changed schools.

maria mom to tim 11 ChARGE

school for kids with CHARGE

I am trying to get a senses of what type of school your children

attend...how many kids go to regular schools, how many to deaf

schools, how many to schools with autistic kids, apraxia...

Barbara

[Guest guest]

Barbara-

My daughter attended our regular school, fully included in a regular

classroom with a 1:1 aide preK through 2nd grade. For 3rd grade she

attended IL School for the Deaf as a day student in order to learn sign.

Next year, for 4th grade, she will attend ISD in the am, and regular school

in the pm - still with a 1:1 aide.

My sense is that placement has as much to do with geographic location and

what options are available as it does with our kids' specific needs. If we

lived further from ISD, it would simply not be an option. If we lived

somewhere with a deaf-ed opportunity in our public schools, her placement

would have been different yet.

Michele W

Aubrie's mom 9 yrs

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

rbwarter

Sent: Wednesday, June 13, 2007 7:51 AM

To: CHARGE

Subject: school for kids with CHARGE

I am trying to get a senses of what type of school your children

attend...how many kids go to regular schools, how many to deaf

schools, how many to schools with autistic kids, apraxia...

Barbara

[Guest guest]

Cathie--

I totally agree with everything you say, and Eddie has followed a

similar path and we'll be working on getting him in district some time

during the next school year. I am hoping to have Perkins in Eddie's

future, but he's only 7 and too dependent (feeding, diapering, etc.)

for me to send him just yet. Still, from what Bonnie and others have

posted, it might be his best chance.

joanne (NJ)

> my daughter is now in our district in a self contained 6-1-1 class,

> with her

> own 1 - 1 nurse.

> used to be in a Special Ed School for her first 3 years, but

> they did

> not see her " potential " or challenge her enough. I looked into a

> school for

> the deaf, and am currently pursuing, however, they will not take

> because she has to many " other " needs. So my district has brought in

> a Teacher for

> the Deaf, who works with 1 hour a day, along with s other

> services she receives, PT, OT, Speech and Vision.

>

> The only perfect school I see is in Boston, and that is not possible,

> at

> this point, Perkins School for the deaf, their deafblind program.

>

> I think the schooling issues are a major issue with a lot of our

> kids, as

> there is not a lot experienced people out their w/CHARGE. There are

> lots of

> programs for Deaf children, CP kids, Down Syndrome, Autism, etc.

> our kids a lot of issues that make it so complicated. I hear this as

> one of

> the biggest concerns with just about every CHARGE parent I know.

>

> Cathie, mom to almost 12

[Guest guest]

My daughter goes to regular public school (inclusion) - that's all there is

around here.

Kennedy's Mom

www.chargesyndrome.info

>

> I am trying to get a senses of what type of school your children

> attend...how many kids go to regular schools, how many to deaf

> schools, how many to schools with autistic kids, apraxia...

> Barbara

>

>

>

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

Hi Barbara--

We've been through so many school placements for Eddie since he left

early intervention at Summit. None has been a perfect fit. He's at a CP

center now, where he's being totally underestimated. I've been

discussing placement options with the case manager--who is reluctant to

bring him in district because they've never had a student with so many

needs--she just gave me the name of 2 private schools from CBVI

(Horizon and Stepping Stones, both in Livingston (NJ)), but I don't

know anything about them. Are you thinking of leaving Lake Drive?

joanne

> I am trying to get a senses of what type of school your children

> attend...how many kids go to regular schools, how many to deaf

> schools, how many to schools with autistic kids, apraxia...

> Barbara

[Guest guest]

Ive attended several types.

Public was great. I was at public school till grade 3 I think. I had some of

the coolest early years teachers as well as itinerary teachers. the

itinerary ( I think they are now teacher aids or intervenors now) were great

in my early years. I had a horrid one in grade 5 and 8 who was bad.

Then I was at various catholic elementary schools. Depended on the school

and area of the city people were from as how I was treated. The downtown and

mnt plesent/ st. areas of toronto were not the best but it is where

students went if their parents refused to have them go to the jane/finch

schools of toronto. I went to one school in grade 5 and 8 and those kids

were very mean. Had a snotty attitude and loved to pick on me cause I had a

dissability. Very unplesent.

Segrigated deaf class would have worked if we actualy learned anything. At

least I became proficiant at signing again. This was in Scarbarough. I was

in grade 6 and 7 so about 11/12. years old.

Private girls high school. Probably the most accomodating in terms of

support, but very expensive option. I wasnt too keen on the day 1 day 2

system cauxe it ment doing 6 to 8 cources all year. However I still liked a

lot of the teachers and made some friends there. The best friends I made

didnt care that I wasnt rich like them. Their were some genuinly nice girls

at the girls school

Catholic school. I enjoyed the semester system the most (I still do). The

school I was at had no issues with me being non catholic not that I shared

that with anyone. I made some friends and had I not been going through some

of the worst times in my life emotionaly, i think some of those friends

might havve been forever friends. It was co-ed but I dont think that really

mattered much to me any more.

I think the only advice i can give is the most important thing to do is to

meet students and meet parents and teachers at a school before deciding what

school you wish to send your child. Reasurch on their dissabilities polocies

and on their track record for keeping their polocies or improving instead of

backtracking on the efforts to include all children regardless of status,

dissability or affiliation.

Hope that came out right.

Chantelle

>

> Hi Barbara--

>

> We've been through so many school placements for Eddie since he left

> early intervention at Summit. None has been a perfect fit. He's at a CP

> center now, where he's being totally underestimated. I've been

> discussing placement options with the case manager--who is reluctant to

> bring him in district because they've never had a student with so many

> needs--she just gave me the name of 2 private schools from CBVI

> (Horizon and Stepping Stones, both in Livingston (NJ)), but I don't

> know anything about them. Are you thinking of leaving Lake Drive?

>

>

--

I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me

[Guest guest]

What great advice Chantelle - thank you for sharing, I didn't realize you

went to so many different schools. I'm starting to wish we had more than

one school system down here.

Lis

>

> Ive attended several types.

>

> Public was great. I was at public school till grade 3 I think. I had some

> of

> the coolest early years teachers as well as itinerary teachers. the

> itinerary ( I think they are now teacher aids or intervenors now) were

> great

> in my early years. I had a horrid one in grade 5 and 8 who was bad.

>

> Then I was at various catholic elementary schools. Depended on the school

> and area of the city people were from as how I was treated. The downtown

> and

> mnt plesent/ st. areas of toronto were not the best but it is where

> students went if their parents refused to have them go to the jane/finch

> schools of toronto. I went to one school in grade 5 and 8 and those kids

> were very mean. Had a snotty attitude and loved to pick on me cause I had

> a

> dissability. Very unplesent.

>

> Segrigated deaf class would have worked if we actualy learned anything. At

> least I became proficiant at signing again. This was in Scarbarough. I was

> in grade 6 and 7 so about 11/12. years old.

>

> Private girls high school. Probably the most accomodating in terms of

> support, but very expensive option. I wasnt too keen on the day 1 day 2

> system cauxe it ment doing 6 to 8 cources all year. However I still liked

> a

> lot of the teachers and made some friends there. The best friends I made

> didnt care that I wasnt rich like them. Their were some genuinly nice

> girls

> at the girls school

>

> Catholic school. I enjoyed the semester system the most (I still do). The

> school I was at had no issues with me being non catholic not that I shared

> that with anyone. I made some friends and had I not been going through

> some

> of the worst times in my life emotionaly, i think some of those friends

> might havve been forever friends. It was co-ed but I dont think that

> really

> mattered much to me any more.

>

> I think the only advice i can give is the most important thing to do is to

> meet students and meet parents and teachers at a school before deciding

> what

> school you wish to send your child. Reasurch on their dissabilities

> polocies

> and on their track record for keeping their polocies or improving instead

> of

> backtracking on the efforts to include all children regardless of status,

> dissability or affiliation.

>

> Hope that came out right.

>

> Chantelle

>

> On 13/06/07, Joanne Lent Joannelent@...>

> wrote:

> >

> > Hi Barbara--

> >

> > We've been through so many school placements for Eddie since he left

> > early intervention at Summit. None has been a perfect fit. He's at a CP

> > center now, where he's being totally underestimated. I've been

> > discussing placement options with the case manager--who is reluctant to

> > bring him in district because they've never had a student with so many

> > needs--she just gave me the name of 2 private schools from CBVI

> > (Horizon and Stepping Stones, both in Livingston (NJ)), but I don't

> > know anything about them. Are you thinking of leaving Lake Drive?

> >

> >

>

> --

> I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! - me

>

>

[Guest guest]

Cameron is in a deaf/hard of hearing program in our school district. The

class is fairly small - five kids right now. The class is taught in a

mostly ASL/English spoken format. The teacher and one aid are hearing

and the the other aid is deaf and only signs. Two of the kids are from

the same family and " just " deaf. Their parents are also deaf, so ASL is

their first language. He receives OT, PT and Speech. There is some

frustration among parents of the DHH kids and we will meet with the

school principal and program lead next week. Although Cameron can and

does talk, he is also maintaining his signing skills which is why we

moved to this district.

Mom to Cameron, CHaRGE, 5 and , 7

[Guest guest]

started special day preschool in the Orthopedically handicapped class with

a signing health aide. This class was housed at a regular ed elementary school.

For the second year of preschool through fifth grade he was primarily in the DHH

class with a health aide, which is also housed at a regular education elementary

school. He began being mainstreamed in third grade (for social studies) and

gradually worked to being completely mainstreamed in sixth grade with a full

time interpreter and a visiting health aide at the same elementary school where

he had been. He went to the middle school where the DHH class is, and was in

the DHH homeroom, but was mainstreamed full time with an interpreter. He elected

to attend a local magnet high school (for technology and the arts) and was

completely mainstreamed with an interpreter.

In the DHH classrooms a total communication approach was used, voice with

conceptually accurate signs (sometimes initialized) in English word order.

)

yuka

[Guest guest]

THanks for the replies.

Joanne- We have had the most horrible year at Lake Drive...they have

been totally intolerant of 's behavior issues and despite

working with a psychiatrist and neurologist who say he can handle

the work and just need time for medications to work, they are

throwing their hands up in resignation. Marie...watch your back

with Timmy (I've told Debbie the same for )...Lake Drive

wants straight deaf kids. Period. I have a friend who's 4 year old

attends Stepping Stones in Livingston (he has CHARGE) and she loves

it and is doing great. I've been wondering about inclusion options

as another way of educating with a 1:1 teacher of the

deaf...its just such a hard decision and so many variables to

consider. I haven't looked into Katzenback due to the distance from

our house...over 1 1/2 hours without traffic just seems impossible

for a 6 year old....

Barbara

>

> > I am trying to get a senses of what type of school your children

> > attend...how many kids go to regular schools, how many to deaf

> > schools, how many to schools with autistic kids, apraxia...

> > Barbara

>

>

[Guest guest]

CHantelle,

Such great advice....it is exactly what we are

doing...researching...looking at kids, asking questions...

Thanks!

Barbara (mom to 6 1/2, 3 1/2)

> >

> > Hi Barbara--

> >

> > We've been through so many school placements for Eddie since he

left

> > early intervention at Summit. None has been a perfect fit. He's

at a CP

> > center now, where he's being totally underestimated. I've been

> > discussing placement options with the case manager--who is

reluctant to

> > bring him in district because they've never had a student with

so many

> > needs--she just gave me the name of 2 private schools from CBVI

> > (Horizon and Stepping Stones, both in Livingston (NJ)), but I

don't

> > know anything about them. Are you thinking of leaving Lake Drive?

> >

> >

>

>

> --

> I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! -

me

>

>

>

[Guest guest]

ive been in a intergrated school and a special school what was best for me

id say at the time each was the best primary special school was best coz i

was so sick and needed more help high school intergrated was best coz i

needed harder work to lean with peers of a normal range hugs ellen

>

> CHantelle,

> Such great advice....it is exactly what we are

> doing...researching...looking at kids, asking questions...

> Thanks!

> Barbara (mom to 6 1/2, 3 1/2)

>

>

> > >

> > > Hi Barbara--

> > >

> > > We've been through so many school placements for Eddie since he

> left

> > > early intervention at Summit. None has been a perfect fit. He's

> at a CP

> > > center now, where he's being totally underestimated. I've been

> > > discussing placement options with the case manager--who is

> reluctant to

> > > bring him in district because they've never had a student with

> so many

> > > needs--she just gave me the name of 2 private schools from CBVI

> > > (Horizon and Stepping Stones, both in Livingston (NJ)), but I

> don't

> > > know anything about them. Are you thinking of leaving Lake Drive?

> > >

> > >

> >

> >

> > --

> > I have 4 eyes, 4 ears, a guide cat and a cat that speaks mouse! -

> me

> >

> >

> >

[Guest guest]

they haven't given us trouble yet, but it's like I can feel it in the air

sometimes. I am looking into katzenbach not necessarily for next year, but

maybe for hs. I know he is not where he should be academically and not sure mt

lakes is going to be the place for him. we are an hour either way, and although

it would be a long ride--it may be worth looking into just to see what's out

there. I'm sorry you've had such a bad experience. who is his teacher?

maria

Re: school for kids with CHARGE

THanks for the replies.

Joanne- We have had the most horrible year at Lake Drive...they have

been totally intolerant of 's behavior issues and despite

working with a psychiatrist and neurologist who say he can handle

the work and just need time for medications to work, they are

throwing their hands up in resignation. Marie...watch your back

with Timmy (I've told Debbie the same for )...Lake Drive

wants straight deaf kids. Period. I have a friend who's 4 year old

attends Stepping Stones in Livingston (he has CHARGE) and she loves

it and is doing great. I've been wondering about inclusion options

as another way of educating with a 1:1 teacher of the

deaf...its just such a hard decision and so many variables to

consider. I haven't looked into Katzenback due to the distance from

our house...over 1 1/2 hours without traffic just seems impossible

for a 6 year old....

Barbara

>

> > I am trying to get a senses of what type of school your children

> > attend...how many kids go to regular schools, how many to deaf

> > schools, how many to schools with autistic kids, apraxia...

> > Barbara

>

>

[Guest guest]

Would your friend be willing to to talk to me about the school? Please

give her my email address: joannelent@.... Thanks.

& good luck with 's situation at Lake Drive. I know what it's like

to feel your child is not wanted.

joanne

> I have a friend who's 4 year old attends Stepping Stones in

> Livingston (he has CHARGE) and she loves

> it and is doing great.

[Guest guest]

I couldn't figure out how to email off list...email me at

rbwarter@... & I'll get her info...

>

> > I have a friend who's 4 year old attends Stepping Stones in

> > Livingston (he has CHARGE) and she loves

> > it and is doing great.

>

>

[Guest guest]

,

Do you have a contact for the school? I would like to look at it as well,

just to see their program but also as a possibility for HS as well. I also

want to look into some vocational programs. There is a great one in

Mendham. Keep me posted on what you find out.

Debbie

Re: Re: school for kids with CHARGE

they haven't given us trouble yet, but it's like I can feel it in the air

sometimes. I am looking into katzenbach not necessarily for next year, but

maybe for hs. I know he is not where he should be academically and not sure

mt lakes is going to be the place for him. we are an hour either way, and

although it would be a long ride--it may be worth looking into just to see

what's out there. I'm sorry you've had such a bad experience. who is his

teacher?

maria

Re: school for kids with CHARGE

THanks for the replies.

Joanne- We have had the most horrible year at Lake Drive...they have

been totally intolerant of 's behavior issues and despite

working with a psychiatrist and neurologist who say he can handle

the work and just need time for medications to work, they are

throwing their hands up in resignation. Marie...watch your back

with Timmy (I've told Debbie the same for )...Lake Drive

wants straight deaf kids. Period. I have a friend who's 4 year old

attends Stepping Stones in Livingston (he has CHARGE) and she loves

it and is doing great. I've been wondering about inclusion options

as another way of educating with a 1:1 teacher of the

deaf...its just such a hard decision and so many variables to

consider. I haven't looked into Katzenback due to the distance from

our house...over 1 1/2 hours without traffic just seems impossible

for a 6 year old....

Barbara

>

> > I am trying to get a senses of what type of school your children

> > attend...how many kids go to regular schools, how many to deaf

> > schools, how many to schools with autistic kids, apraxia...

> > Barbara

>

>

[Guest guest]

I don't have a contact, but I went on line and got some info-- said her

boys are going there , so she may have a contact.

Re: school for kids with CHARGE

THanks for the replies.

Joanne- We have had the most horrible year at Lake Drive...they have

been totally intolerant of 's behavior issues and despite

working with a psychiatrist and neurologist who say he can handle

the work and just need time for medications to work, they are

throwing their hands up in resignation. Marie...watch your back

with Timmy (I've told Debbie the same for )...Lake Drive

wants straight deaf kids. Period. I have a friend who's 4 year old

attends Stepping Stones in Livingston (he has CHARGE) and she loves

it and is doing great. I've been wondering about inclusion options

as another way of educating with a 1:1 teacher of the

deaf...its just such a hard decision and so many variables to

consider. I haven't looked into Katzenback due to the distance from

our house...over 1 1/2 hours without traffic just seems impossible

for a 6 year old....

Barbara

>

> > I am trying to get a senses of what type of school your children

> > attend...how many kids go to regular schools, how many to deaf

> > schools, how many to schools with autistic kids, apraxia...

> > Barbara

>

>

[Guest guest]

Ethan has attended a school for the deaf for preK and will continue there

through grade 8. We are lucky that even though Ethan has many medical needs

(trach, g-tube), our district is supportive of his attendance at this school.

Jody - mom to Ethan (ChARGE) and

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

TV dinner still cooling?

Check out " Tonight's Picks " on Yahoo! TV.

[Guest guest]

Does your school district supply a nurse

Jody Wolfe jdwolfe4@...> wrote: Ethan has attended a school for

the deaf for preK and will continue there through grade 8. We are lucky that

even though Ethan has many medical needs (trach, g-tube), our district is

supportive of his attendance at this school.

Jody - mom to Ethan (ChARGE) and

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

TV dinner still cooling?

Check out " Tonight's Picks " on Yahoo! TV.

[Guest guest]

Does your school district supply a nurse

Jody Wolfe jdwolfe4@...> wrote: Ethan has attended a school for

the deaf for preK and will continue there through grade 8. We are lucky that

even though Ethan has many medical needs (trach, g-tube), our district is

supportive of his attendance at this school.

Jody - mom to Ethan (ChARGE) and

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

TV dinner still cooling?

Check out " Tonight's Picks " on Yahoo! TV.