Re: Amelie school issues!!

[Guest guest]

Hi Lesley,

First, hopefully Sue Barker is reading this as I owe her an apology for

getting all the Barker names totally confused. Ooops! Maybe I should not

send out mail so late into the night. There goes my sponsorship for my

retirement run. Sorry Sue.

Back to your questions Lesley. No, you do not need an educational statement

to visit the schools at all. Sometimes getting a feel of what they offer is

good to get your head round the whole statement thing and to just give you a

rough idea what you might be looking for. There are times when visiting a

totally unsuitable place really focuses you on what is suitable. Really,

the only reason to ask for a statement this early is if you decide that you

want Amelie to start school as soon as she is two, and it sounds as though

that opportunity might be an option. Given that it is so close, if her

surgeries and immediate medical issues are contained, I would take up the

opportunity but of course you are the best judge. I would agree with Bonnie

in the sense that I think the provisions for at the day nursery she

attended were ones which we probably would not have had access to at home.

And yes, it was horrible sending her out into the big world at the age of

one, but if I think of Elly, she too went to a child minder at the same age

and then day nursery at age 2 (though of course I have to acknowledge their

different needs). She too travels around 90 minutes each way now and it is

a killer and I wish it wasn't so but.............

As far as I know, and I could well be wrong here, in order to attend a

special school you do need to have a Statement of Educational Needs. The

National Deaf Children's Society do a quite good guide on statements,

viewing special schools, questions to ask etc, but of course it is mostly

focused on deafness. It did help us to understand the process some though.

Just google NDCS and you will find their phone number or you may even be

able to download the info you want? The NDCS have been useful to us in all

manner of ways so an organisation worth contacting.

Your local education authority should also have some info (but ours was as

useful as a chocolate fire guard!) There are local organisations and

usually someone designated within the education authority who can help you

with the statement (or rather read it and let you know if you have left

anything out etc. The one in ours picked up immediately that we had not

addressed the transport issue which was crucial, so worth a try, but you are

not yet there so don't panic just yet). I hear they are really rather

useful (the local organisations that is) so worth looking into these. Your

keyworker may know which ones. Oh, I seem to have lied because we requested

J's statement at 18 months and it was ready when she was almost 2-1/2 so it

did take longer than 6 months but she started getting some of the provision

before the statement was complete while she was at the Special Needs

Nursery.

If you have a deafblind teacher, they should also be able to contribute to

the statement. Also, worth contacting Sense as they do carry out

assessments which can inform the statements. Basically, anyone you want to

contribute to it can do so (ie any professional working with Amelie).

Also, if vision is really poor, worth contacting RNIB for advise also re

statements. We never used them so can't comment.

Don't worry about driving us all mad with questions, we were there once

too. Ask anything you want, no matter how small it may seem. We may not

have the answers but we may know someone who might.

Will dig up J's statement and reports and forward a copy. Simon is the man

who finds, I am jus the woman who loses so soon as he finds it, the double

act will be on again.

On Amelie's vision, you will probably know more about how she is using her

vision than professionals can assess right now. We were told J would

probably only be able to just about dress herself with the poverty of vision

but, well, you saw her. Not discounting the prognosis but, well, keep an

open mind. J also has bilateral colobomas and vision in one eye only but

she uses this really well as you could see, but obviously she does struggle

with things. Your observations of Amelie are really important so keep

watching (silly advise, as if you wouldn't!!!)

Cheers and take it easy...........

Flo

PS we requested statement, they said well, um well and we insisted so don't

be fobbed off whenever you do go for one. We looked around while they were

umming and ooohing.

[Guest guest]

Hi Lesley,

First, hopefully Sue Barker is reading this as I owe her an apology for

getting all the Barker names totally confused. Ooops! Maybe I should not

send out mail so late into the night. There goes my sponsorship for my

retirement run. Sorry Sue.

Back to your questions Lesley. No, you do not need an educational statement

to visit the schools at all. Sometimes getting a feel of what they offer is

good to get your head round the whole statement thing and to just give you a

rough idea what you might be looking for. There are times when visiting a

totally unsuitable place really focuses you on what is suitable. Really,

the only reason to ask for a statement this early is if you decide that you

want Amelie to start school as soon as she is two, and it sounds as though

that opportunity might be an option. Given that it is so close, if her

surgeries and immediate medical issues are contained, I would take up the

opportunity but of course you are the best judge. I would agree with Bonnie

in the sense that I think the provisions for at the day nursery she

attended were ones which we probably would not have had access to at home.

And yes, it was horrible sending her out into the big world at the age of

one, but if I think of Elly, she too went to a child minder at the same age

and then day nursery at age 2 (though of course I have to acknowledge their

different needs). She too travels around 90 minutes each way now and it is

a killer and I wish it wasn't so but.............

As far as I know, and I could well be wrong here, in order to attend a

special school you do need to have a Statement of Educational Needs. The

National Deaf Children's Society do a quite good guide on statements,

viewing special schools, questions to ask etc, but of course it is mostly

focused on deafness. It did help us to understand the process some though.

Just google NDCS and you will find their phone number or you may even be

able to download the info you want? The NDCS have been useful to us in all

manner of ways so an organisation worth contacting.

Your local education authority should also have some info (but ours was as

useful as a chocolate fire guard!) There are local organisations and

usually someone designated within the education authority who can help you

with the statement (or rather read it and let you know if you have left

anything out etc. The one in ours picked up immediately that we had not

addressed the transport issue which was crucial, so worth a try, but you are

not yet there so don't panic just yet). I hear they are really rather

useful (the local organisations that is) so worth looking into these. Your

keyworker may know which ones. Oh, I seem to have lied because we requested

J's statement at 18 months and it was ready when she was almost 2-1/2 so it

did take longer than 6 months but she started getting some of the provision

before the statement was complete while she was at the Special Needs

Nursery.

If you have a deafblind teacher, they should also be able to contribute to

the statement. Also, worth contacting Sense as they do carry out

assessments which can inform the statements. Basically, anyone you want to

contribute to it can do so (ie any professional working with Amelie).

Also, if vision is really poor, worth contacting RNIB for advise also re

statements. We never used them so can't comment.

Don't worry about driving us all mad with questions, we were there once

too. Ask anything you want, no matter how small it may seem. We may not

have the answers but we may know someone who might.

Will dig up J's statement and reports and forward a copy. Simon is the man

who finds, I am jus the woman who loses so soon as he finds it, the double

act will be on again.

On Amelie's vision, you will probably know more about how she is using her

vision than professionals can assess right now. We were told J would

probably only be able to just about dress herself with the poverty of vision

but, well, you saw her. Not discounting the prognosis but, well, keep an

open mind. J also has bilateral colobomas and vision in one eye only but

she uses this really well as you could see, but obviously she does struggle

with things. Your observations of Amelie are really important so keep

watching (silly advise, as if you wouldn't!!!)

Cheers and take it easy...........

Flo

PS we requested statement, they said well, um well and we insisted so don't

be fobbed off whenever you do go for one. We looked around while they were

umming and ooohing.

[Guest guest]

Hi Lesley,

First, hopefully Sue Barker is reading this as I owe her an apology for

getting all the Barker names totally confused. Ooops! Maybe I should not

send out mail so late into the night. There goes my sponsorship for my

retirement run. Sorry Sue.

Back to your questions Lesley. No, you do not need an educational statement

to visit the schools at all. Sometimes getting a feel of what they offer is

good to get your head round the whole statement thing and to just give you a

rough idea what you might be looking for. There are times when visiting a

totally unsuitable place really focuses you on what is suitable. Really,

the only reason to ask for a statement this early is if you decide that you

want Amelie to start school as soon as she is two, and it sounds as though

that opportunity might be an option. Given that it is so close, if her

surgeries and immediate medical issues are contained, I would take up the

opportunity but of course you are the best judge. I would agree with Bonnie

in the sense that I think the provisions for at the day nursery she

attended were ones which we probably would not have had access to at home.

And yes, it was horrible sending her out into the big world at the age of

one, but if I think of Elly, she too went to a child minder at the same age

and then day nursery at age 2 (though of course I have to acknowledge their

different needs). She too travels around 90 minutes each way now and it is

a killer and I wish it wasn't so but.............

As far as I know, and I could well be wrong here, in order to attend a

special school you do need to have a Statement of Educational Needs. The

National Deaf Children's Society do a quite good guide on statements,

viewing special schools, questions to ask etc, but of course it is mostly

focused on deafness. It did help us to understand the process some though.

Just google NDCS and you will find their phone number or you may even be

able to download the info you want? The NDCS have been useful to us in all

manner of ways so an organisation worth contacting.

Your local education authority should also have some info (but ours was as

useful as a chocolate fire guard!) There are local organisations and

usually someone designated within the education authority who can help you

with the statement (or rather read it and let you know if you have left

anything out etc. The one in ours picked up immediately that we had not

addressed the transport issue which was crucial, so worth a try, but you are

not yet there so don't panic just yet). I hear they are really rather

useful (the local organisations that is) so worth looking into these. Your

keyworker may know which ones. Oh, I seem to have lied because we requested

J's statement at 18 months and it was ready when she was almost 2-1/2 so it

did take longer than 6 months but she started getting some of the provision

before the statement was complete while she was at the Special Needs

Nursery.

If you have a deafblind teacher, they should also be able to contribute to

the statement. Also, worth contacting Sense as they do carry out

assessments which can inform the statements. Basically, anyone you want to

contribute to it can do so (ie any professional working with Amelie).

Also, if vision is really poor, worth contacting RNIB for advise also re

statements. We never used them so can't comment.

Don't worry about driving us all mad with questions, we were there once

too. Ask anything you want, no matter how small it may seem. We may not

have the answers but we may know someone who might.

Will dig up J's statement and reports and forward a copy. Simon is the man

who finds, I am jus the woman who loses so soon as he finds it, the double

act will be on again.

On Amelie's vision, you will probably know more about how she is using her

vision than professionals can assess right now. We were told J would

probably only be able to just about dress herself with the poverty of vision

but, well, you saw her. Not discounting the prognosis but, well, keep an

open mind. J also has bilateral colobomas and vision in one eye only but

she uses this really well as you could see, but obviously she does struggle

with things. Your observations of Amelie are really important so keep

watching (silly advise, as if you wouldn't!!!)

Cheers and take it easy...........

Flo

PS we requested statement, they said well, um well and we insisted so don't

be fobbed off whenever you do go for one. We looked around while they were

umming and ooohing.

[Guest guest]

Lesley-

Flo said something that prompted my memory. When Aubrie was 3, I was

pushing for a combined full-day program: half day in the self-contained

special ed preschool and half day in the " regular " PreK with typical kids.

Both were half-day programs so she could attend each in it's entirety with

all of her special therapies in the spec ed portion and an uninterrupted

PreK portion of the day.

One of the school administrators argued that a full day was just too much

for a 3-yr-old. My reply was that many children spend an even longer day in

day care and do just fine -- so long as the program is developmentally

appropriate with snacks, naps, etc.

That first year, the PreK was full and an opening never became available.

The year she turned 4, she did both programs quite successfully.

As with everything else, we have to think outside the box. What makes sense

for our typical kids, just may not make sense for our kids with CHARGE.

You'll figure it out. What's important now is that you keep her healthy and

begin to organize your thoughts and gather information about your options.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Lesley-

Flo said something that prompted my memory. When Aubrie was 3, I was

pushing for a combined full-day program: half day in the self-contained

special ed preschool and half day in the " regular " PreK with typical kids.

Both were half-day programs so she could attend each in it's entirety with

all of her special therapies in the spec ed portion and an uninterrupted

PreK portion of the day.

One of the school administrators argued that a full day was just too much

for a 3-yr-old. My reply was that many children spend an even longer day in

day care and do just fine -- so long as the program is developmentally

appropriate with snacks, naps, etc.

That first year, the PreK was full and an opening never became available.

The year she turned 4, she did both programs quite successfully.

As with everything else, we have to think outside the box. What makes sense

for our typical kids, just may not make sense for our kids with CHARGE.

You'll figure it out. What's important now is that you keep her healthy and

begin to organize your thoughts and gather information about your options.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

,

That's it in a nutshell- Think outside that box. Gosh I just hate that box.

Heck once we got outside that silly old box we never entered it again.

Yippeeeeee!

Bonnie, Mom to a 23, Patty CHARGE 21 and wife to

RE: Re: Amelie school issues!!

Lesley-

Flo said something that prompted my memory. When Aubrie was 3, I was

pushing for a combined full-day program: half day in the self-contained

special ed preschool and half day in the " regular " PreK with typical kids.

Both were half-day programs so she could attend each in it's entirety with

all of her special therapies in the spec ed portion and an uninterrupted

PreK portion of the day.

One of the school administrators argued that a full day was just too much

for a 3-yr-old. My reply was that many children spend an even longer day in

day care and do just fine -- so long as the program is developmentally

appropriate with snacks, naps, etc.

That first year, the PreK was full and an opening never became available.

The year she turned 4, she did both programs quite successfully.

As with everything else, we have to think outside the box. What makes sense

for our typical kids, just may not make sense for our kids with CHARGE.

You'll figure it out. What's important now is that you keep her healthy and

begin to organize your thoughts and gather information about your options.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; 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

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

,

That's it in a nutshell- Think outside that box. Gosh I just hate that box.

Heck once we got outside that silly old box we never entered it again.

Yippeeeeee!

Bonnie, Mom to a 23, Patty CHARGE 21 and wife to

RE: Re: Amelie school issues!!

Lesley-

Flo said something that prompted my memory. When Aubrie was 3, I was

pushing for a combined full-day program: half day in the self-contained

special ed preschool and half day in the " regular " PreK with typical kids.

Both were half-day programs so she could attend each in it's entirety with

all of her special therapies in the spec ed portion and an uninterrupted

PreK portion of the day.

One of the school administrators argued that a full day was just too much

for a 3-yr-old. My reply was that many children spend an even longer day in

day care and do just fine -- so long as the program is developmentally

appropriate with snacks, naps, etc.

That first year, the PreK was full and an opening never became available.

The year she turned 4, she did both programs quite successfully.

As with everything else, we have to think outside the box. What makes sense

for our typical kids, just may not make sense for our kids with CHARGE.

You'll figure it out. What's important now is that you keep her healthy and

begin to organize your thoughts and gather information about your options.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; 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

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

,

That's it in a nutshell- Think outside that box. Gosh I just hate that box.

Heck once we got outside that silly old box we never entered it again.

Yippeeeeee!

Bonnie, Mom to a 23, Patty CHARGE 21 and wife to

RE: Re: Amelie school issues!!

Lesley-

Flo said something that prompted my memory. When Aubrie was 3, I was

pushing for a combined full-day program: half day in the self-contained

special ed preschool and half day in the " regular " PreK with typical kids.

Both were half-day programs so she could attend each in it's entirety with

all of her special therapies in the spec ed portion and an uninterrupted

PreK portion of the day.

One of the school administrators argued that a full day was just too much

for a 3-yr-old. My reply was that many children spend an even longer day in

day care and do just fine -- so long as the program is developmentally

appropriate with snacks, naps, etc.

That first year, the PreK was full and an opening never became available.

The year she turned 4, she did both programs quite successfully.

As with everything else, we have to think outside the box. What makes sense

for our typical kids, just may not make sense for our kids with CHARGE.

You'll figure it out. What's important now is that you keep her healthy and

begin to organize your thoughts and gather information about your options.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

CHARGE SYNDROME LISTSERV PHOTO PAGE:

http://www.imagestation.com/album/?id=2117043995

Membership of this email support group does not constitute membership in the

CHARGE Syndrome Foundation; 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

8th International

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

www.chargesyndrome.org or by calling 1-.

[Guest guest]

Maybe we could design CHARGE t-shirt with something about boxes... And

ripples, of course!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: Re: Amelie school issues!!

,

That's it in a nutshell- Think outside that box. Gosh I just hate that

box.

Heck once we got outside that silly old box we never entered it again.

Yippeeeeee!

Bonnie, Mom to a 23, Patty CHARGE 21 and wife to

[Guest guest]

Maybe we could design CHARGE t-shirt with something about boxes... And

ripples, of course!

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

Re: Re: Amelie school issues!!

,

That's it in a nutshell- Think outside that box. Gosh I just hate that

box.

Heck once we got outside that silly old box we never entered it again.

Yippeeeeee!

Bonnie, Mom to a 23, Patty CHARGE 21 and wife to

[Guest guest]

Flo bonnie and michele

thanks for this, its sort of making sense!!!

FLO i did join sense, finally sent my cheque and membership off months

ago, they rang to say they would be in touch, but that was ages ago,

so i dont know if thats the norm, can i ring them and ask for advice??

is that the norm??

cheers Les x

> Maybe we could design CHARGE t-shirt with something about boxes... And

> ripples, of course!

>

> Michele W

> mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

>

>

> Re: Re: Amelie school issues!!

>

> ,

>

> That's it in a nutshell- Think outside that box. Gosh I just hate that

> box.

>

> Heck once we got outside that silly old box we never entered it again.

> Yippeeeeee!

>

> Bonnie, Mom to a 23, Patty CHARGE 21 and wife to

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

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

> CHARGE Syndrome Foundation; 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

>

> 8th International

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

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

>

[Guest guest]

Lesley-

Don't know how it is in UK, but here my advice would be: When in doubt,

call. It never hurts to call for support from anywhere. Either they will

help, they'll put in contact with someone who can, or it will be a dead end.

In my experience, more often than not, all calls lead to something.

Michele W

mom to Aubrie 8 yrs CHARGE, 14 yrs and wife to DJ

[Guest guest]

Lesley,

You do not have to be a member of Sense to get advise or use their

services. The membership just entitles you to various publications, a right

to vote for various things, inclusion in surveys and I am sure quite a bit

more which of course I don't remember becuase the most prolific contact we

have with them is as service users. So by all means do contact them for

advise. I hope they will be of use to you.

Flo

>

> Flo bonnie and michele

>

> thanks for this, its sort of making sense!!!

>

> FLO i did join sense, finally sent my cheque and membership off months

> ago, they rang to say they would be in touch, but that was ages ago,

> so i dont know if thats the norm, can i ring them and ask for advice??

> is that the norm??

>

> cheers Les x

>

>