Re: Amelie school issues!!

[Guest guest]

> >

> > Tim stated early inervention at 3 mos. 2 hours aweek with

spec.

> ed teacher

> > , speech, pt and ot and he had 2 hour addtional pt and speech.

at

> 3 he went

> > 1/2 day everyday pre-k for 3 years. then all day kind.

> > in spec.ed/ reg/ ed situation. until he started falling behind

in

> 1st gr.

> > then we fought to get him in hard of hearing and deaf school--

> doing much

> > better there 3 yrs now.

> >

> > it depends on the individual child and schools, but fight for

what

> you think

> > your child needs!!

> >

> > mom to tim 10 ChARGE, keegan 8 liam 5 wife to pat

> > Amelie school issues!!

> >

> >

> > > Back in the land of the charge living!! thanks to gmail and

> > > chantelle ellen and lisa and all who advised it!!

> > >

> > > Amelies key worker has suggested i go to see the school where

> they

> > > want to send her!! they say age 2 she should be part time

which

> will

> > > be January, but because of her extra requirements and needs i

> should

> > > be starting this process no later than July.

> > >

> > > firstly, I am not keen on our local health authority school,

its

> > > very clean and apparently very good, but after going to the

> CHARGE

> > > syndrome UK annual get together at the Royal Cheadle school

for

> the

> > > deaf, this is where we want her to go, its all about money and

> > > funding and fighting your local authorities.

> > >

> > > also very impotantly how can we even contemplate school with

> another

> > > operation fast looming!! but at the same time we dont want to

> fall

> > > further behind with her progress which as you all know is

very

> slow

> > > due to 11 of her 15 months in hospital!!

> > >

> > > what should we do for the best...is she too young at 2, what

do

> the

> > > kids over the pond do???

> > >

> > > not important i know but starting to get stressed about this

> school

> > > business!!

> > >

> > > love Les and amelie xx and chanclan

> > >

> > >

> > >

> > >

> > >

> > > 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]

Hi Lesley,

received early intervention services from 6 weeks of age in

a center-based setting (with me present) until we moved to Texas. He

then received services in our home until he was nearly 3 years old,

at which time he went to a pre-school which was located in our

district public school. We got very lucky to have a great teacher,

although the first meeting to discuss the planning for services was

horrible. At his age, he did not walk or bear weight on his legs and

was just learning to crawl. They were not going to offer physical

therapy for him! HELLO?!! Is something wrong here?! After a lot of

arguing from me, he finally got PT services. Another thing was that

they made me get a wheelchair for him in order to use the bus (they

would not allow a stroller on the bus) because they claimed it was a

safety issue. I was fortunate enough to know someone who I could

borrow one from, but insisted that they take him out of the chair as

soon as he got to school and told them I would be dropping in to

check on that!! LOL

Anyway, we have always used public school services and have been

very lucky to have great teachers for the most part. Although I

worried about how things would go in school, socialization was very

important for because, as it was written several times in

his medical records, he had a " profound attachment to his mother "

(read: I could not shower/eat/sleep/use the bathroom alone for three

years LOL). Go with your gut instinct...you know your child best and

what she needs. When we got here to Virginia, they wanted to put my

son in a special education class with children who were able to walk

to class by themselves and sat in groups to read and write....all

things cannot do. I have a bad feeling about the school and

the administration just thought I was an overprotective parent who

just underestimated my son's abilities. After about a week, they

called a meeting to say they didn't think that school was the best

fit for . NO, REALLY?! I couldn't help but say " I told you

so " because I was so frustrated that they wasted a week of his time

and confused him. He is now in a great school with great staff and

kids more on his level. I think if you are not comfortable with the

school, Amelie will pick up on your stress...I honestly believe that

and know that at least for me, that's true. Good luck!

[Guest guest]

Hi Lesley,

received early intervention services from 6 weeks of age in

a center-based setting (with me present) until we moved to Texas. He

then received services in our home until he was nearly 3 years old,

at which time he went to a pre-school which was located in our

district public school. We got very lucky to have a great teacher,

although the first meeting to discuss the planning for services was

horrible. At his age, he did not walk or bear weight on his legs and

was just learning to crawl. They were not going to offer physical

therapy for him! HELLO?!! Is something wrong here?! After a lot of

arguing from me, he finally got PT services. Another thing was that

they made me get a wheelchair for him in order to use the bus (they

would not allow a stroller on the bus) because they claimed it was a

safety issue. I was fortunate enough to know someone who I could

borrow one from, but insisted that they take him out of the chair as

soon as he got to school and told them I would be dropping in to

check on that!! LOL

Anyway, we have always used public school services and have been

very lucky to have great teachers for the most part. Although I

worried about how things would go in school, socialization was very

important for because, as it was written several times in

his medical records, he had a " profound attachment to his mother "

(read: I could not shower/eat/sleep/use the bathroom alone for three

years LOL). Go with your gut instinct...you know your child best and

what she needs. When we got here to Virginia, they wanted to put my

son in a special education class with children who were able to walk

to class by themselves and sat in groups to read and write....all

things cannot do. I have a bad feeling about the school and

the administration just thought I was an overprotective parent who

just underestimated my son's abilities. After about a week, they

called a meeting to say they didn't think that school was the best

fit for . NO, REALLY?! I couldn't help but say " I told you

so " because I was so frustrated that they wasted a week of his time

and confused him. He is now in a great school with great staff and

kids more on his level. I think if you are not comfortable with the

school, Amelie will pick up on your stress...I honestly believe that

and know that at least for me, that's true. Good luck!

[Guest guest]

Hi Lesley,

received early intervention services from 6 weeks of age in

a center-based setting (with me present) until we moved to Texas. He

then received services in our home until he was nearly 3 years old,

at which time he went to a pre-school which was located in our

district public school. We got very lucky to have a great teacher,

although the first meeting to discuss the planning for services was

horrible. At his age, he did not walk or bear weight on his legs and

was just learning to crawl. They were not going to offer physical

therapy for him! HELLO?!! Is something wrong here?! After a lot of

arguing from me, he finally got PT services. Another thing was that

they made me get a wheelchair for him in order to use the bus (they

would not allow a stroller on the bus) because they claimed it was a

safety issue. I was fortunate enough to know someone who I could

borrow one from, but insisted that they take him out of the chair as

soon as he got to school and told them I would be dropping in to

check on that!! LOL

Anyway, we have always used public school services and have been

very lucky to have great teachers for the most part. Although I

worried about how things would go in school, socialization was very

important for because, as it was written several times in

his medical records, he had a " profound attachment to his mother "

(read: I could not shower/eat/sleep/use the bathroom alone for three

years LOL). Go with your gut instinct...you know your child best and

what she needs. When we got here to Virginia, they wanted to put my

son in a special education class with children who were able to walk

to class by themselves and sat in groups to read and write....all

things cannot do. I have a bad feeling about the school and

the administration just thought I was an overprotective parent who

just underestimated my son's abilities. After about a week, they

called a meeting to say they didn't think that school was the best

fit for . NO, REALLY?! I couldn't help but say " I told you

so " because I was so frustrated that they wasted a week of his time

and confused him. He is now in a great school with great staff and

kids more on his level. I think if you are not comfortable with the

school, Amelie will pick up on your stress...I honestly believe that

and know that at least for me, that's true. Good luck!

[Guest guest]

gosh Ellen

it sounds as though you have had a lot of moving around through

school, but its important to let you know that you do fit in, in

life and especially here, your very valued amongst us mums and dads,

its just others in society who dont fit in,they dont know how

special you chargers are!! but we know how amazing you all are.

lots of hugs and loves lesley x Amelie x

> > > > >

> > > > > Age 2???!? yikes...I sure wasn't ready for sending Kennedy

out of

> > > > the room

> > > > > let alone to school at age 2. We had teachers for the

deaf/hard

> > > > of hearing

> > > > > and blind/visually impaired, & an early interventionist

who came

> > > > to the

> > > > > house from age 6mos - until school (five) who taught her

and

> > > > taught *me* how

> > > > > to work with her. She did go to a little

daycare/preschool at

> > > > about 4 just

> > > > > to get her ready socially for school, etc. Maybe it is

for the

> > > > best, but I

> > > > > sure as HECK wasn't ready to send Kennedy anywhere at age

2...WAY

> > > > too

> > > > > protective still and " nobody " could take care of her the

way I

> > > > could back

> > > > > then (in my humble opinion ha ha ha)...

> > > > > Good luck with the decisions and upcoming surgery and BTW,

you

> > > > will LOVE

> > > > > gmail...in particular for CHARGE mail...it's oodles better.

> > > > > Love & hugs,

> > > > >

> > > > >

> > > > >

> > > > > --

> > > > > Weir

> > > > > kawfolks@

> > > > > http://lemonsandlollipops.blogspot.com

> > > > > http://ca.geocities.com/weirfamily@

> > > > >

> > > > >

> > > > >

[Guest guest]

gosh Ellen

it sounds as though you have had a lot of moving around through

school, but its important to let you know that you do fit in, in

life and especially here, your very valued amongst us mums and dads,

its just others in society who dont fit in,they dont know how

special you chargers are!! but we know how amazing you all are.

lots of hugs and loves lesley x Amelie x

> > > > >

> > > > > Age 2???!? yikes...I sure wasn't ready for sending Kennedy

out of

> > > > the room

> > > > > let alone to school at age 2. We had teachers for the

deaf/hard

> > > > of hearing

> > > > > and blind/visually impaired, & an early interventionist

who came

> > > > to the

> > > > > house from age 6mos - until school (five) who taught her

and

> > > > taught *me* how

> > > > > to work with her. She did go to a little

daycare/preschool at

> > > > about 4 just

> > > > > to get her ready socially for school, etc. Maybe it is

for the

> > > > best, but I

> > > > > sure as HECK wasn't ready to send Kennedy anywhere at age

2...WAY

> > > > too

> > > > > protective still and " nobody " could take care of her the

way I

> > > > could back

> > > > > then (in my humble opinion ha ha ha)...

> > > > > Good luck with the decisions and upcoming surgery and BTW,

you

> > > > will LOVE

> > > > > gmail...in particular for CHARGE mail...it's oodles better.

> > > > > Love & hugs,

> > > > >

> > > > >

> > > > >

> > > > > --

> > > > > Weir

> > > > > kawfolks@

> > > > > http://lemonsandlollipops.blogspot.com

> > > > > http://ca.geocities.com/weirfamily@

> > > > >

> > > > >

> > > > >

[Guest guest]

Ellen-

Moving your group around sounds really crazy. In my heart, I believe in

inclusion. I believe Aubrie can and should be taught right alongside her

peers because that is the best way to prepare her for adulthood alongside

her peers. In my perfect world, each classroom would have a natural mix of

typical kids and kids with all kinds of disabilities with a regular ed

teacher, a special ed teacher, and however many other adults are needed to

meet the needs of those particular kids. And if class sizes needed to be

smaller to make it work, then that would benefit *all* of the kids.

But, of course, the world is not perfect. I still need to make my website

" www.askchele.com " so the world can consult me before making any big

decisions. As my husband has so clearly pointed out -- I do have all the

answers! LOL

Everyone fits in the world. So why can't we fit in a classroom? The

classrooms must not be a good representation of the world!

Michele W

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

[Guest guest]

Ellen-

Moving your group around sounds really crazy. In my heart, I believe in

inclusion. I believe Aubrie can and should be taught right alongside her

peers because that is the best way to prepare her for adulthood alongside

her peers. In my perfect world, each classroom would have a natural mix of

typical kids and kids with all kinds of disabilities with a regular ed

teacher, a special ed teacher, and however many other adults are needed to

meet the needs of those particular kids. And if class sizes needed to be

smaller to make it work, then that would benefit *all* of the kids.

But, of course, the world is not perfect. I still need to make my website

" www.askchele.com " so the world can consult me before making any big

decisions. As my husband has so clearly pointed out -- I do have all the

answers! LOL

Everyone fits in the world. So why can't we fit in a classroom? The

classrooms must not be a good representation of the world!

Michele W

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

[Guest guest]

i think reading about ,s and everyones school experience,

has made me realise that i won know whats rigt or wrong for Amelies

needs, and i guess your right that she will guide me, interesting that

some have chosen local smaller special needs over big (cheadle school

for the deaf) which is vast in comparison. I think it may be a good

idea to start with the smaller special needs scholl part time, and see

if its meeting her needs and make sure shes happy going and take it

slowly from there.

thanks everyone for the sound advice,

Michele i love your post on classroom and world representation, and i

would consult you before making any decisions...it makes sense to me!

lol les x

lesley x amelie x

> Ellen-

> Moving your group around sounds really crazy. In my heart, I believe in

> inclusion. I believe Aubrie can and should be taught right alongside her

> peers because that is the best way to prepare her for adulthood alongside

> her peers. In my perfect world, each classroom would have a natural mix of

> typical kids and kids with all kinds of disabilities with a regular ed

> teacher, a special ed teacher, and however many other adults are needed to

> meet the needs of those particular kids. And if class sizes needed to be

> smaller to make it work, then that would benefit *all* of the kids.

>

> But, of course, the world is not perfect. I still need to make my website

> " www.askchele.com " so the world can consult me before making any big

> decisions. As my husband has so clearly pointed out -- I do have all the

> answers! LOL

>

> Everyone fits in the world. So why can't we fit in a classroom? The

> classrooms must not be a good representation of the world!

>

> 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]

i think reading about ,s and everyones school experience,

has made me realise that i won know whats rigt or wrong for Amelies

needs, and i guess your right that she will guide me, interesting that

some have chosen local smaller special needs over big (cheadle school

for the deaf) which is vast in comparison. I think it may be a good

idea to start with the smaller special needs scholl part time, and see

if its meeting her needs and make sure shes happy going and take it

slowly from there.

thanks everyone for the sound advice,

Michele i love your post on classroom and world representation, and i

would consult you before making any decisions...it makes sense to me!

lol les x

lesley x amelie x

> Ellen-

> Moving your group around sounds really crazy. In my heart, I believe in

> inclusion. I believe Aubrie can and should be taught right alongside her

> peers because that is the best way to prepare her for adulthood alongside

> her peers. In my perfect world, each classroom would have a natural mix of

> typical kids and kids with all kinds of disabilities with a regular ed

> teacher, a special ed teacher, and however many other adults are needed to

> meet the needs of those particular kids. And if class sizes needed to be

> smaller to make it work, then that would benefit *all* of the kids.

>

> But, of course, the world is not perfect. I still need to make my website

> " www.askchele.com " so the world can consult me before making any big

> decisions. As my husband has so clearly pointed out -- I do have all the

> answers! LOL

>

> Everyone fits in the world. So why can't we fit in a classroom? The

> classrooms must not be a good representation of the world!

>

> 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]

Hi Lesley,

Here is my 2 pence worth. whoever suggested you get started looking at

schools for Amelie while she is undergoing immediate medical and sugical

treatment is jumping ahead of themselves, however wellmeaning they may be.

Can't recall who here said that you have had little opportunity to spend

time with Amelie in view of medical admissions, and it certainly feels that

way looking in from outside. I do agree that with a child with special

educational needs, it is worth starting to look at schools sooner rather

than later as it is an unknown territory and process to most people and also

as by the time the Statement of Educational Needs is completed you may well

have gone grey and torn your grey hair out. However, I would always go for

getting some level of medical stability as a priority first. However, I

also take on board that now that Amelie has had a longer time at home, if

you have the time and not many other pressing needs, it is worth taking an

IDLE look at what there is around. It is worth you doing your own research

as well as taking on board those that the professionals suggest to you. In

our experience, without the understanding of CHARGE and the particular

child, it is easy to suggest options which may be totally inappropriate for

the child. I say this because our local know nothing teachers of the deaf

(and boy, have we stories to tell about those dinasaurs) made totally

inappropriate suggestions for , without understanding CHARGE,

deafblindness etc. Her Sense MSI teacher was quite horrified to hear what

they were suggesting, thank goodness. They had already decided before she

was 2 that she had a severe learning disability in itself and not taken on

board her deafblindness, multisensory impairment, impact of CHARGE etc. The

teacher for the deaf, suffice to say had only met her once at this stage!

Long story short (now there's a first for me), here is a little about

's education career to date. Because I had to return to work or

resign when she was 1, I returned part time and she went to a special needs

local authority day nursery 3 days a week. It was OK and the plus side was

that she had access to regular physio, OT, and Speech and Language

therapists. The first two were great, the SALT was pretty hopeless since

she could not sign and her pespective was very speech orientated and she

could not encourage the staff to sign since she herself could not. We

struggled with communication issues but the other areas were addressed

fairly well. Before was 2, we requested an assessment for her

Statement and here the fun began. Prior to the assessment being completed,

she was allocated a 1:1 worker, which from all other perspectives, except

communication, was excellent. This woman adored and was really

commited to all her therapies, so now you know who started her bouncy life.

As much as she was willing to learn to sign, the nursery were not that keen

to spend the money, and quite frankly we thought that while she learnt

anyway, J would be losing out, soooooo..........

At a CHARGE families day, Hannah Levey suggested School for

deaf children (where her son was at the time) to us. With a little

hesitation (due to distance), we went to look. We had by then looked at

various schools locally and were feeling quite deflated. The rest is

history. We loved the school. It is nice and small (max 50 up to age 11)

and since J is profoundly deaf, a sign bilingual environment was perfect for

her, plus she has the vision to see the signs. She started there when she

was 2-1/2, attending half days until she was 3. But I have to say that J

had her last big medical procedure when she was 6 months old so we had had

plenty of home time. She is big on the sensory stuff, but since her

discharge at 3 months old, we have only had minor emergencies and the big

heart op. The school serves her very well at present and their biggest

strength is in listening to us and assuming we know her best and also

enlisting the help of the MSI teacher whenever the need arises and being

very much welcoming of external input (eg they are waiting for Sense to do a

technology assessment with a view to providing for her visual impairment,

they welcome the VI and MSI teachers as well as her deafbling social

worker's input etc).

Starting to look at schools early never hurt anyone, but don't take it too

seriously right now. I would suggest though that you make a formal request

for an educational statement before she is 2 as after 2, the local authority

are not compelled to assess at your request but at the request of relevant

professionals. We felt we would like to control this, but it is a matter

for individuals and also needs to take into account the child's needs of

that time. We requested 's when she was 18 months old and it took 6

months to complete. In all honesty, the communication issue was what made

us make this request since a clear need was not being met. We had hoped

that we could push for a signing 1:1 at the nursery, but once we found

School, our agenda changed. It really does depend on Amelie's

needs.

Gees, this was supposed to be a short e-mail. I have just had a quick

google of the Manchester Schools for the deaf (they claim to cater for

deafblind children with other disabilities) and they admit from age 3. I am

sure that Terri ('s gran) would be happy to put you in touch with her

mum Sue who can give you her views of the school from when she visited. I

too know that I have met a little girl at one of the family days who goes to

the school. It may be that the school may be able to put you in contact.

The other thing to take into account right now Lesley is that Amelie has not

completed her assessments to enable you to establish what her needs are.

You do not know her level of hearing, sorry, can't remember her issues, if

any, on vision etc. As you continue to work with her at home, her needs

will become increasingly evident to you. Most of us have been able to make

such solid decisions on the basis that we have had our children's issues

fairly adequately assessed and could make decisions based on these

assessments if medical needs have permitted. Amelie has had a turbulent

year and there are still big gaps to be filled. Nothing to stop you

visiting a school more than once so you could always go for relaxed initial

visits and then arrange to visit at a later date again once you are more

clear about her needs. A final tip, take Amelie along and you will see who

shows an interest, who immediately jumps to negative conclusions, who is

prepared to take the view that she is an unknown entity and she may yet

achieve plenty (the view from J's current school on meeting her when all she

did was bum shuffle only on specific surfaces), who writes her off (we

steered clear of these) etc.

Finally (I hear a sigh of relief), as much as I know the two girlies have

very different, needs, should you want a copy of J's Educational Statement

of Needs for reference or just to give you an idea, please do let us know

and we can forward one to you. We had the priviledge of having a look at

's before we sent our views to the L.A.

On that note, now I know why I was always so successful with funding

panels. They got bored of reading my reports and just gave in to me to

avoid having to have more epistles sent in!

Cheers!

Flo

[Guest guest]

Flo

wonderful summary.......but half way through i couldnt remember what i

should do next!!!.

1. should i ask for a statement of education first?

2. i would like the lady whos seen Manchester schools to email me can

you pass this on to her?

3. iit would be great if i could read s report, to give me

ideas of what to expect.

Amelie is profoundly deaf no aids yet and bilateral colobomas optic

nerve, her vision is very poor, although she plays with two hands and

takes objects from you, she also appears to smile and recognise us

now, although she looked very vacant in the early months, she cries

when she sees a dolly of fleurs and doesnt do this with any other

irem, its really strange, she must be able to see it and she just

doesnt like it!!

Flo i fear i am going to drive all the brits mad with the educational

stuff as i get very indicisive and send myself mad, also easily

pleased, but with amelie i need to get it as right as i can.

thanks for this amazing summary, i would have you on my panel fighting

my corner any day, you should be running crappy social services!!! GO

FLO GO!!

love Les x

> Hi Lesley,

> Here is my 2 pence worth. whoever suggested you get started looking at

> schools for Amelie while she is undergoing immediate medical and sugical

> treatment is jumping ahead of themselves, however wellmeaning they may be.

> Can't recall who here said that you have had little opportunity to spend

> time with Amelie in view of medical admissions, and it certainly feels that

> way looking in from outside. I do agree that with a child with special

> educational needs, it is worth starting to look at schools sooner rather

> than later as it is an unknown territory and process to most people and also

> as by the time the Statement of Educational Needs is completed you may well

> have gone grey and torn your grey hair out. However, I would always go for

> getting some level of medical stability as a priority first. However, I

> also take on board that now that Amelie has had a longer time at home, if

> you have the time and not many other pressing needs, it is worth taking an

> IDLE look at what there is around. It is worth you doing your own research

> as well as taking on board those that the professionals suggest to you. In

> our experience, without the understanding of CHARGE and the particular

> child, it is easy to suggest options which may be totally inappropriate for

> the child. I say this because our local know nothing teachers of the deaf

> (and boy, have we stories to tell about those dinasaurs) made totally

> inappropriate suggestions for , without understanding CHARGE,

> deafblindness etc. Her Sense MSI teacher was quite horrified to hear what

> they were suggesting, thank goodness. They had already decided before she

> was 2 that she had a severe learning disability in itself and not taken on

> board her deafblindness, multisensory impairment, impact of CHARGE etc. The

> teacher for the deaf, suffice to say had only met her once at this stage!

>

> Long story short (now there's a first for me), here is a little about

> 's education career to date. Because I had to return to work or

> resign when she was 1, I returned part time and she went to a special needs

> local authority day nursery 3 days a week. It was OK and the plus side was

> that she had access to regular physio, OT, and Speech and Language

> therapists. The first two were great, the SALT was pretty hopeless since

> she could not sign and her pespective was very speech orientated and she

> could not encourage the staff to sign since she herself could not. We

> struggled with communication issues but the other areas were addressed

> fairly well. Before was 2, we requested an assessment for her

> Statement and here the fun began. Prior to the assessment being completed,

> she was allocated a 1:1 worker, which from all other perspectives, except

> communication, was excellent. This woman adored and was really

> commited to all her therapies, so now you know who started her bouncy life.

> As much as she was willing to learn to sign, the nursery were not that keen

> to spend the money, and quite frankly we thought that while she learnt

> anyway, J would be losing out, soooooo..........

>

> At a CHARGE families day, Hannah Levey suggested School for

> deaf children (where her son was at the time) to us. With a little

> hesitation (due to distance), we went to look. We had by then looked at

> various schools locally and were feeling quite deflated. The rest is

> history. We loved the school. It is nice and small (max 50 up to age 11)

> and since J is profoundly deaf, a sign bilingual environment was perfect for

> her, plus she has the vision to see the signs. She started there when she

> was 2-1/2, attending half days until she was 3. But I have to say that J

> had her last big medical procedure when she was 6 months old so we had had

> plenty of home time. She is big on the sensory stuff, but since her

> discharge at 3 months old, we have only had minor emergencies and the big

> heart op. The school serves her very well at present and their biggest

> strength is in listening to us and assuming we know her best and also

> enlisting the help of the MSI teacher whenever the need arises and being

> very much welcoming of external input (eg they are waiting for Sense to do a

> technology assessment with a view to providing for her visual impairment,

> they welcome the VI and MSI teachers as well as her deafbling social

> worker's input etc).

>

> Starting to look at schools early never hurt anyone, but don't take it too

> seriously right now. I would suggest though that you make a formal request

> for an educational statement before she is 2 as after 2, the local authority

> are not compelled to assess at your request but at the request of relevant

> professionals. We felt we would like to control this, but it is a matter

> for individuals and also needs to take into account the child's needs of

> that time. We requested 's when she was 18 months old and it took 6

> months to complete. In all honesty, the communication issue was what made

> us make this request since a clear need was not being met. We had hoped

> that we could push for a signing 1:1 at the nursery, but once we found

> School, our agenda changed. It really does depend on Amelie's

> needs.

>

> Gees, this was supposed to be a short e-mail. I have just had a quick

> google of the Manchester Schools for the deaf (they claim to cater for

> deafblind children with other disabilities) and they admit from age 3. I am

> sure that Terri ('s gran) would be happy to put you in touch with her

> mum Sue who can give you her views of the school from when she visited. I

> too know that I have met a little girl at one of the family days who goes to

> the school. It may be that the school may be able to put you in contact.

>

> The other thing to take into account right now Lesley is that Amelie has not

> completed her assessments to enable you to establish what her needs are.

> You do not know her level of hearing, sorry, can't remember her issues, if

> any, on vision etc. As you continue to work with her at home, her needs

> will become increasingly evident to you. Most of us have been able to make

> such solid decisions on the basis that we have had our children's issues

> fairly adequately assessed and could make decisions based on these

> assessments if medical needs have permitted. Amelie has had a turbulent

> year and there are still big gaps to be filled. Nothing to stop you

> visiting a school more than once so you could always go for relaxed initial

> visits and then arrange to visit at a later date again once you are more

> clear about her needs. A final tip, take Amelie along and you will see who

> shows an interest, who immediately jumps to negative conclusions, who is

> prepared to take the view that she is an unknown entity and she may yet

> achieve plenty (the view from J's current school on meeting her when all she

> did was bum shuffle only on specific surfaces), who writes her off (we

> steered clear of these) etc.

>

> Finally (I hear a sigh of relief), as much as I know the two girlies have

> very different, needs, should you want a copy of J's Educational Statement

> of Needs for reference or just to give you an idea, please do let us know

> and we can forward one to you. We had the priviledge of having a look at

> 's before we sent our views to the L.A.

>

> On that note, now I know why I was always so successful with funding

> panels. They got bored of reading my reports and just gave in to me to

> avoid having to have more epistles sent in!

>

> Cheers!

> Flo

>

>

>

[Guest guest]

Flo

wonderful summary.......but half way through i couldnt remember what i

should do next!!!.

1. should i ask for a statement of education first?

2. i would like the lady whos seen Manchester schools to email me can

you pass this on to her?

3. iit would be great if i could read s report, to give me

ideas of what to expect.

Amelie is profoundly deaf no aids yet and bilateral colobomas optic

nerve, her vision is very poor, although she plays with two hands and

takes objects from you, she also appears to smile and recognise us

now, although she looked very vacant in the early months, she cries

when she sees a dolly of fleurs and doesnt do this with any other

irem, its really strange, she must be able to see it and she just

doesnt like it!!

Flo i fear i am going to drive all the brits mad with the educational

stuff as i get very indicisive and send myself mad, also easily

pleased, but with amelie i need to get it as right as i can.

thanks for this amazing summary, i would have you on my panel fighting

my corner any day, you should be running crappy social services!!! GO

FLO GO!!

love Les x

> Hi Lesley,

> Here is my 2 pence worth. whoever suggested you get started looking at

> schools for Amelie while she is undergoing immediate medical and sugical

> treatment is jumping ahead of themselves, however wellmeaning they may be.

> Can't recall who here said that you have had little opportunity to spend

> time with Amelie in view of medical admissions, and it certainly feels that

> way looking in from outside. I do agree that with a child with special

> educational needs, it is worth starting to look at schools sooner rather

> than later as it is an unknown territory and process to most people and also

> as by the time the Statement of Educational Needs is completed you may well

> have gone grey and torn your grey hair out. However, I would always go for

> getting some level of medical stability as a priority first. However, I

> also take on board that now that Amelie has had a longer time at home, if

> you have the time and not many other pressing needs, it is worth taking an

> IDLE look at what there is around. It is worth you doing your own research

> as well as taking on board those that the professionals suggest to you. In

> our experience, without the understanding of CHARGE and the particular

> child, it is easy to suggest options which may be totally inappropriate for

> the child. I say this because our local know nothing teachers of the deaf

> (and boy, have we stories to tell about those dinasaurs) made totally

> inappropriate suggestions for , without understanding CHARGE,

> deafblindness etc. Her Sense MSI teacher was quite horrified to hear what

> they were suggesting, thank goodness. They had already decided before she

> was 2 that she had a severe learning disability in itself and not taken on

> board her deafblindness, multisensory impairment, impact of CHARGE etc. The

> teacher for the deaf, suffice to say had only met her once at this stage!

>

> Long story short (now there's a first for me), here is a little about

> 's education career to date. Because I had to return to work or

> resign when she was 1, I returned part time and she went to a special needs

> local authority day nursery 3 days a week. It was OK and the plus side was

> that she had access to regular physio, OT, and Speech and Language

> therapists. The first two were great, the SALT was pretty hopeless since

> she could not sign and her pespective was very speech orientated and she

> could not encourage the staff to sign since she herself could not. We

> struggled with communication issues but the other areas were addressed

> fairly well. Before was 2, we requested an assessment for her

> Statement and here the fun began. Prior to the assessment being completed,

> she was allocated a 1:1 worker, which from all other perspectives, except

> communication, was excellent. This woman adored and was really

> commited to all her therapies, so now you know who started her bouncy life.

> As much as she was willing to learn to sign, the nursery were not that keen

> to spend the money, and quite frankly we thought that while she learnt

> anyway, J would be losing out, soooooo..........

>

> At a CHARGE families day, Hannah Levey suggested School for

> deaf children (where her son was at the time) to us. With a little

> hesitation (due to distance), we went to look. We had by then looked at

> various schools locally and were feeling quite deflated. The rest is

> history. We loved the school. It is nice and small (max 50 up to age 11)

> and since J is profoundly deaf, a sign bilingual environment was perfect for

> her, plus she has the vision to see the signs. She started there when she

> was 2-1/2, attending half days until she was 3. But I have to say that J

> had her last big medical procedure when she was 6 months old so we had had

> plenty of home time. She is big on the sensory stuff, but since her

> discharge at 3 months old, we have only had minor emergencies and the big

> heart op. The school serves her very well at present and their biggest

> strength is in listening to us and assuming we know her best and also

> enlisting the help of the MSI teacher whenever the need arises and being

> very much welcoming of external input (eg they are waiting for Sense to do a

> technology assessment with a view to providing for her visual impairment,

> they welcome the VI and MSI teachers as well as her deafbling social

> worker's input etc).

>

> Starting to look at schools early never hurt anyone, but don't take it too

> seriously right now. I would suggest though that you make a formal request

> for an educational statement before she is 2 as after 2, the local authority

> are not compelled to assess at your request but at the request of relevant

> professionals. We felt we would like to control this, but it is a matter

> for individuals and also needs to take into account the child's needs of

> that time. We requested 's when she was 18 months old and it took 6

> months to complete. In all honesty, the communication issue was what made

> us make this request since a clear need was not being met. We had hoped

> that we could push for a signing 1:1 at the nursery, but once we found

> School, our agenda changed. It really does depend on Amelie's

> needs.

>

> Gees, this was supposed to be a short e-mail. I have just had a quick

> google of the Manchester Schools for the deaf (they claim to cater for

> deafblind children with other disabilities) and they admit from age 3. I am

> sure that Terri ('s gran) would be happy to put you in touch with her

> mum Sue who can give you her views of the school from when she visited. I

> too know that I have met a little girl at one of the family days who goes to

> the school. It may be that the school may be able to put you in contact.

>

> The other thing to take into account right now Lesley is that Amelie has not

> completed her assessments to enable you to establish what her needs are.

> You do not know her level of hearing, sorry, can't remember her issues, if

> any, on vision etc. As you continue to work with her at home, her needs

> will become increasingly evident to you. Most of us have been able to make

> such solid decisions on the basis that we have had our children's issues

> fairly adequately assessed and could make decisions based on these

> assessments if medical needs have permitted. Amelie has had a turbulent

> year and there are still big gaps to be filled. Nothing to stop you

> visiting a school more than once so you could always go for relaxed initial

> visits and then arrange to visit at a later date again once you are more

> clear about her needs. A final tip, take Amelie along and you will see who

> shows an interest, who immediately jumps to negative conclusions, who is

> prepared to take the view that she is an unknown entity and she may yet

> achieve plenty (the view from J's current school on meeting her when all she

> did was bum shuffle only on specific surfaces), who writes her off (we

> steered clear of these) etc.

>

> Finally (I hear a sigh of relief), as much as I know the two girlies have

> very different, needs, should you want a copy of J's Educational Statement

> of Needs for reference or just to give you an idea, please do let us know

> and we can forward one to you. We had the priviledge of having a look at

> 's before we sent our views to the L.A.

>

> On that note, now I know why I was always so successful with funding

> panels. They got bored of reading my reports and just gave in to me to

> avoid having to have more epistles sent in!

>

> Cheers!

> Flo

>

>

>

[Guest guest]

Flo

wonderful summary.......but half way through i couldnt remember what i

should do next!!!.

1. should i ask for a statement of education first?

2. i would like the lady whos seen Manchester schools to email me can

you pass this on to her?

3. iit would be great if i could read s report, to give me

ideas of what to expect.

Amelie is profoundly deaf no aids yet and bilateral colobomas optic

nerve, her vision is very poor, although she plays with two hands and

takes objects from you, she also appears to smile and recognise us

now, although she looked very vacant in the early months, she cries

when she sees a dolly of fleurs and doesnt do this with any other

irem, its really strange, she must be able to see it and she just

doesnt like it!!

Flo i fear i am going to drive all the brits mad with the educational

stuff as i get very indicisive and send myself mad, also easily

pleased, but with amelie i need to get it as right as i can.

thanks for this amazing summary, i would have you on my panel fighting

my corner any day, you should be running crappy social services!!! GO

FLO GO!!

love Les x

> Hi Lesley,

> Here is my 2 pence worth. whoever suggested you get started looking at

> schools for Amelie while she is undergoing immediate medical and sugical

> treatment is jumping ahead of themselves, however wellmeaning they may be.

> Can't recall who here said that you have had little opportunity to spend

> time with Amelie in view of medical admissions, and it certainly feels that

> way looking in from outside. I do agree that with a child with special

> educational needs, it is worth starting to look at schools sooner rather

> than later as it is an unknown territory and process to most people and also

> as by the time the Statement of Educational Needs is completed you may well

> have gone grey and torn your grey hair out. However, I would always go for

> getting some level of medical stability as a priority first. However, I

> also take on board that now that Amelie has had a longer time at home, if

> you have the time and not many other pressing needs, it is worth taking an

> IDLE look at what there is around. It is worth you doing your own research

> as well as taking on board those that the professionals suggest to you. In

> our experience, without the understanding of CHARGE and the particular

> child, it is easy to suggest options which may be totally inappropriate for

> the child. I say this because our local know nothing teachers of the deaf

> (and boy, have we stories to tell about those dinasaurs) made totally

> inappropriate suggestions for , without understanding CHARGE,

> deafblindness etc. Her Sense MSI teacher was quite horrified to hear what

> they were suggesting, thank goodness. They had already decided before she

> was 2 that she had a severe learning disability in itself and not taken on

> board her deafblindness, multisensory impairment, impact of CHARGE etc. The

> teacher for the deaf, suffice to say had only met her once at this stage!

>

> Long story short (now there's a first for me), here is a little about

> 's education career to date. Because I had to return to work or

> resign when she was 1, I returned part time and she went to a special needs

> local authority day nursery 3 days a week. It was OK and the plus side was

> that she had access to regular physio, OT, and Speech and Language

> therapists. The first two were great, the SALT was pretty hopeless since

> she could not sign and her pespective was very speech orientated and she

> could not encourage the staff to sign since she herself could not. We

> struggled with communication issues but the other areas were addressed

> fairly well. Before was 2, we requested an assessment for her

> Statement and here the fun began. Prior to the assessment being completed,

> she was allocated a 1:1 worker, which from all other perspectives, except

> communication, was excellent. This woman adored and was really

> commited to all her therapies, so now you know who started her bouncy life.

> As much as she was willing to learn to sign, the nursery were not that keen

> to spend the money, and quite frankly we thought that while she learnt

> anyway, J would be losing out, soooooo..........

>

> At a CHARGE families day, Hannah Levey suggested School for

> deaf children (where her son was at the time) to us. With a little

> hesitation (due to distance), we went to look. We had by then looked at

> various schools locally and were feeling quite deflated. The rest is

> history. We loved the school. It is nice and small (max 50 up to age 11)

> and since J is profoundly deaf, a sign bilingual environment was perfect for

> her, plus she has the vision to see the signs. She started there when she

> was 2-1/2, attending half days until she was 3. But I have to say that J

> had her last big medical procedure when she was 6 months old so we had had

> plenty of home time. She is big on the sensory stuff, but since her

> discharge at 3 months old, we have only had minor emergencies and the big

> heart op. The school serves her very well at present and their biggest

> strength is in listening to us and assuming we know her best and also

> enlisting the help of the MSI teacher whenever the need arises and being

> very much welcoming of external input (eg they are waiting for Sense to do a

> technology assessment with a view to providing for her visual impairment,

> they welcome the VI and MSI teachers as well as her deafbling social

> worker's input etc).

>

> Starting to look at schools early never hurt anyone, but don't take it too

> seriously right now. I would suggest though that you make a formal request

> for an educational statement before she is 2 as after 2, the local authority

> are not compelled to assess at your request but at the request of relevant

> professionals. We felt we would like to control this, but it is a matter

> for individuals and also needs to take into account the child's needs of

> that time. We requested 's when she was 18 months old and it took 6

> months to complete. In all honesty, the communication issue was what made

> us make this request since a clear need was not being met. We had hoped

> that we could push for a signing 1:1 at the nursery, but once we found

> School, our agenda changed. It really does depend on Amelie's

> needs.

>

> Gees, this was supposed to be a short e-mail. I have just had a quick

> google of the Manchester Schools for the deaf (they claim to cater for

> deafblind children with other disabilities) and they admit from age 3. I am

> sure that Terri ('s gran) would be happy to put you in touch with her

> mum Sue who can give you her views of the school from when she visited. I

> too know that I have met a little girl at one of the family days who goes to

> the school. It may be that the school may be able to put you in contact.

>

> The other thing to take into account right now Lesley is that Amelie has not

> completed her assessments to enable you to establish what her needs are.

> You do not know her level of hearing, sorry, can't remember her issues, if

> any, on vision etc. As you continue to work with her at home, her needs

> will become increasingly evident to you. Most of us have been able to make

> such solid decisions on the basis that we have had our children's issues

> fairly adequately assessed and could make decisions based on these

> assessments if medical needs have permitted. Amelie has had a turbulent

> year and there are still big gaps to be filled. Nothing to stop you

> visiting a school more than once so you could always go for relaxed initial

> visits and then arrange to visit at a later date again once you are more

> clear about her needs. A final tip, take Amelie along and you will see who

> shows an interest, who immediately jumps to negative conclusions, who is

> prepared to take the view that she is an unknown entity and she may yet

> achieve plenty (the view from J's current school on meeting her when all she

> did was bum shuffle only on specific surfaces), who writes her off (we

> steered clear of these) etc.

>

> Finally (I hear a sigh of relief), as much as I know the two girlies have

> very different, needs, should you want a copy of J's Educational Statement

> of Needs for reference or just to give you an idea, please do let us know

> and we can forward one to you. We had the priviledge of having a look at

> 's before we sent our views to the L.A.

>

> On that note, now I know why I was always so successful with funding

> panels. They got bored of reading my reports and just gave in to me to

> avoid having to have more epistles sent in!

>

> Cheers!

> Flo

>

>

>

[Guest guest]

Lesley

Sue Barker's email address is at the top of her post but I am sure she won't

mind me highlighting it. It's sueandterrybarker@.... 's mum

is . I know of a teenager with CHARGE who started at Cheadle Hume last

September and I have his mum's details somewhere.

Simon

[Guest guest]

Lesley

Sue Barker's email address is at the top of her post but I am sure she won't

mind me highlighting it. It's sueandterrybarker@.... 's mum

is . I know of a teenager with CHARGE who started at Cheadle Hume last

September and I have his mum's details somewhere.

Simon

[Guest guest]

Lesley

Sue Barker's email address is at the top of her post but I am sure she won't

mind me highlighting it. It's sueandterrybarker@.... 's mum

is . I know of a teenager with CHARGE who started at Cheadle Hume last

September and I have his mum's details somewhere.

Simon

[Guest guest]

These decisions are hard to make for everyone. Any advice is hard because all

children are different. So are services and programs. Remember always that you

do must be what you feel is right. Go with your mothers heart. Trust it to lead

you. Having said that though I honestly believe early intervention is just as

important as medical intervention. Once you get the life threatening medical

issues under your belt then go with it.

The two are equally important.

Patty didn't have the CHARGE diagnosis till she was a teenager. That was both

good and bad. If we had known maybe we wouldn't have been so pro active in her

early intervention.

When she came home from the hospital we had services come out to the house that

very week. They did the assessments and all. Then we had the teacher, PT, OT

and Speech and Language Pathologist come out to our home to work with me, Patty,

and anyone else in the home! Her teacher came out twice a week. She was great.

They all helped me learn how to feed her, move her and accept all of her.

By nine months old though she still wasn't holding her head, making real sounds,

or any of that baby stuff. I did tons of research and found a school for the

children with disabilities. I knew Patty needed more early on to have a better

life in her future. Our school district thought their programs were good but I

saw that they were limited. They were for the generic children with

disabilities. So I found a school and by ten months old I put Patty on a bus to

go to a school 40 minutes away.

It killed me. It totally killed me. It absolutely killed me. I thought I

would die of heart break. Or worse, I thought Patty would. But it was worth

it. There she got constant attention, motion, caring, moving....

She stayed at that program for about a year and a half. Often she missed school

because of illnesses and surgeries. When she did they sent the

teachers/therapists out to the house when she healed some.

There she learned how to roll, oh dear, she learned everything. I also must

admit that I would jump in my car and show up to check on her. And they didn't

care! She did have summers off with her teacher only coming about once a week.

And yes, there she learned how to walk. She also learned how to sign. It was

an intensive but happy program. It was also a program that involved the entire

family.

But.... the children all had varying types of disabilities and Patty was

modeling their behaviors. At the age of two she was starting to make guttural

sounds and was trying to talk. Patty was the only hearing impaired child there.

So I did more research.

I found a school for the deaf. We had meetings and meetings and finally she was

accepted at that program. They had four or five children who were either deaf

or hard of hearing in the morning with three adults. It was an oral program.

Then during lunch five " normal " children would join them, and about two more

adults. The afternoon was still facilitated but was looser. It was great.

Patty received all her therapies there and was thriving. There she learned how

to talk. They also worked very closely with me and I did whatever they told me

to and then some. There she learned how to read and write.

I do have to say this school was over an hour away. Again, it killed me! But

we had no choice. It was that or she wouldn't be given the vital learning

opportunities she needed for her future as an adult. I am thankful we did.

When she got to kindergarten age this school was next to a public school. In

the morning she had her special class and then during lunch she would go to the

kindergarten class with her teacher and the other class teacher. It was

phenomenal.

I think, no I know, Patty has come as far as she did because of her early

intervention programs.

It is a hard thing to weigh. What do you do, where do you send your child, who

do you trust, who knows what to do in case of medical emergencies, will your

child not bond with you.............

The last statement I have to admit that was my biggest and most selfish fear,

that I her mother wouldn't be with her. Would others bond more closely than I

would be able to. That was a worry I need not have had. We had a close

relationship and Patty knew I was her mother even when she couldn't talk. She

loved me and knew I loved her. That was multiplied instead of being taken away.

The only thing I would change in all of that is I would have insisted on having

Patty keep sign language. It is her real language. Other than that though- I

am glad we did what we did and wouldn't change anything else.

Whatever you decide must come from your heart and what you know will be right

for your child. Oh, and a was only two years older than Patty and

we/they had her participate in all activities, parties,... They too became

incredibly close. They are closer than most siblings and always have been.

Good luck with everything.

In the end no matter what you do remember- Life's good.

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

[Guest guest]

These decisions are hard to make for everyone. Any advice is hard because all

children are different. So are services and programs. Remember always that you

do must be what you feel is right. Go with your mothers heart. Trust it to lead

you. Having said that though I honestly believe early intervention is just as

important as medical intervention. Once you get the life threatening medical

issues under your belt then go with it.

The two are equally important.

Patty didn't have the CHARGE diagnosis till she was a teenager. That was both

good and bad. If we had known maybe we wouldn't have been so pro active in her

early intervention.

When she came home from the hospital we had services come out to the house that

very week. They did the assessments and all. Then we had the teacher, PT, OT

and Speech and Language Pathologist come out to our home to work with me, Patty,

and anyone else in the home! Her teacher came out twice a week. She was great.

They all helped me learn how to feed her, move her and accept all of her.

By nine months old though she still wasn't holding her head, making real sounds,

or any of that baby stuff. I did tons of research and found a school for the

children with disabilities. I knew Patty needed more early on to have a better

life in her future. Our school district thought their programs were good but I

saw that they were limited. They were for the generic children with

disabilities. So I found a school and by ten months old I put Patty on a bus to

go to a school 40 minutes away.

It killed me. It totally killed me. It absolutely killed me. I thought I

would die of heart break. Or worse, I thought Patty would. But it was worth

it. There she got constant attention, motion, caring, moving....

She stayed at that program for about a year and a half. Often she missed school

because of illnesses and surgeries. When she did they sent the

teachers/therapists out to the house when she healed some.

There she learned how to roll, oh dear, she learned everything. I also must

admit that I would jump in my car and show up to check on her. And they didn't

care! She did have summers off with her teacher only coming about once a week.

And yes, there she learned how to walk. She also learned how to sign. It was

an intensive but happy program. It was also a program that involved the entire

family.

But.... the children all had varying types of disabilities and Patty was

modeling their behaviors. At the age of two she was starting to make guttural

sounds and was trying to talk. Patty was the only hearing impaired child there.

So I did more research.

I found a school for the deaf. We had meetings and meetings and finally she was

accepted at that program. They had four or five children who were either deaf

or hard of hearing in the morning with three adults. It was an oral program.

Then during lunch five " normal " children would join them, and about two more

adults. The afternoon was still facilitated but was looser. It was great.

Patty received all her therapies there and was thriving. There she learned how

to talk. They also worked very closely with me and I did whatever they told me

to and then some. There she learned how to read and write.

I do have to say this school was over an hour away. Again, it killed me! But

we had no choice. It was that or she wouldn't be given the vital learning

opportunities she needed for her future as an adult. I am thankful we did.

When she got to kindergarten age this school was next to a public school. In

the morning she had her special class and then during lunch she would go to the

kindergarten class with her teacher and the other class teacher. It was

phenomenal.

I think, no I know, Patty has come as far as she did because of her early

intervention programs.

It is a hard thing to weigh. What do you do, where do you send your child, who

do you trust, who knows what to do in case of medical emergencies, will your

child not bond with you.............

The last statement I have to admit that was my biggest and most selfish fear,

that I her mother wouldn't be with her. Would others bond more closely than I

would be able to. That was a worry I need not have had. We had a close

relationship and Patty knew I was her mother even when she couldn't talk. She

loved me and knew I loved her. That was multiplied instead of being taken away.

The only thing I would change in all of that is I would have insisted on having

Patty keep sign language. It is her real language. Other than that though- I

am glad we did what we did and wouldn't change anything else.

Whatever you decide must come from your heart and what you know will be right

for your child. Oh, and a was only two years older than Patty and

we/they had her participate in all activities, parties,... They too became

incredibly close. They are closer than most siblings and always have been.

Good luck with everything.

In the end no matter what you do remember- Life's good.

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

[Guest guest]

These decisions are hard to make for everyone. Any advice is hard because all

children are different. So are services and programs. Remember always that you

do must be what you feel is right. Go with your mothers heart. Trust it to lead

you. Having said that though I honestly believe early intervention is just as

important as medical intervention. Once you get the life threatening medical

issues under your belt then go with it.

The two are equally important.

Patty didn't have the CHARGE diagnosis till she was a teenager. That was both

good and bad. If we had known maybe we wouldn't have been so pro active in her

early intervention.

When she came home from the hospital we had services come out to the house that

very week. They did the assessments and all. Then we had the teacher, PT, OT

and Speech and Language Pathologist come out to our home to work with me, Patty,

and anyone else in the home! Her teacher came out twice a week. She was great.

They all helped me learn how to feed her, move her and accept all of her.

By nine months old though she still wasn't holding her head, making real sounds,

or any of that baby stuff. I did tons of research and found a school for the

children with disabilities. I knew Patty needed more early on to have a better

life in her future. Our school district thought their programs were good but I

saw that they were limited. They were for the generic children with

disabilities. So I found a school and by ten months old I put Patty on a bus to

go to a school 40 minutes away.

It killed me. It totally killed me. It absolutely killed me. I thought I

would die of heart break. Or worse, I thought Patty would. But it was worth

it. There she got constant attention, motion, caring, moving....

She stayed at that program for about a year and a half. Often she missed school

because of illnesses and surgeries. When she did they sent the

teachers/therapists out to the house when she healed some.

There she learned how to roll, oh dear, she learned everything. I also must

admit that I would jump in my car and show up to check on her. And they didn't

care! She did have summers off with her teacher only coming about once a week.

And yes, there she learned how to walk. She also learned how to sign. It was

an intensive but happy program. It was also a program that involved the entire

family.

But.... the children all had varying types of disabilities and Patty was

modeling their behaviors. At the age of two she was starting to make guttural

sounds and was trying to talk. Patty was the only hearing impaired child there.

So I did more research.

I found a school for the deaf. We had meetings and meetings and finally she was

accepted at that program. They had four or five children who were either deaf

or hard of hearing in the morning with three adults. It was an oral program.

Then during lunch five " normal " children would join them, and about two more

adults. The afternoon was still facilitated but was looser. It was great.

Patty received all her therapies there and was thriving. There she learned how

to talk. They also worked very closely with me and I did whatever they told me

to and then some. There she learned how to read and write.

I do have to say this school was over an hour away. Again, it killed me! But

we had no choice. It was that or she wouldn't be given the vital learning

opportunities she needed for her future as an adult. I am thankful we did.

When she got to kindergarten age this school was next to a public school. In

the morning she had her special class and then during lunch she would go to the

kindergarten class with her teacher and the other class teacher. It was

phenomenal.

I think, no I know, Patty has come as far as she did because of her early

intervention programs.

It is a hard thing to weigh. What do you do, where do you send your child, who

do you trust, who knows what to do in case of medical emergencies, will your

child not bond with you.............

The last statement I have to admit that was my biggest and most selfish fear,

that I her mother wouldn't be with her. Would others bond more closely than I

would be able to. That was a worry I need not have had. We had a close

relationship and Patty knew I was her mother even when she couldn't talk. She

loved me and knew I loved her. That was multiplied instead of being taken away.

The only thing I would change in all of that is I would have insisted on having

Patty keep sign language. It is her real language. Other than that though- I

am glad we did what we did and wouldn't change anything else.

Whatever you decide must come from your heart and what you know will be right

for your child. Oh, and a was only two years older than Patty and

we/they had her participate in all activities, parties,... They too became

incredibly close. They are closer than most siblings and always have been.

Good luck with everything.

In the end no matter what you do remember- Life's good.

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

[Guest guest]

Thanks simon much appreciated, if you manage to find other details let me

know, team effort from your house as usual always on the ball !

love Les x

>

> Lesley

>

> Sue Barker's email address is at the top of her post but I am sure she

> won't

> mind me highlighting it. It's sueandterrybarker@.... 's

> mum

> is . I know of a teenager with CHARGE who started at Cheadle Hume

> last

> September and I have his mum's details somewhere.

>

> Simon

>

>

>

[Guest guest]

Thanks simon much appreciated, if you manage to find other details let me

know, team effort from your house as usual always on the ball !

love Les x

>

> Lesley

>

> Sue Barker's email address is at the top of her post but I am sure she

> won't

> mind me highlighting it. It's sueandterrybarker@.... 's

> mum

> is . I know of a teenager with CHARGE who started at Cheadle Hume

> last

> September and I have his mum's details somewhere.

>

> Simon

>

>

>

[Guest guest]

Bonnie,

I tink this is maybe why they are keen to get amelie off to school sooner

rather than later, so long in hospital confined to a cot and machines has

not helped her, and like Patty at 9 months there is so much she cant do at

15 months, like head holding for long, no signs of sitting or rolling, no

vocalising, just lots of smiles and wriggling around her floor space, she

loves her hydraulic chair which hold her upright very snug and supported.

thanks for sharing those painful early days of handing over your loved one

to the educational department, i too will feel panic when this arrives,

which by the sounds of it will be soon!!

love Les x

>

> These decisions are hard to make for everyone. Any advice is hard because

> all children are different. So are services and programs. Remember always

> that you do must be what you feel is right. Go with your mothers heart.

> Trust it to lead you. Having said that though I honestly believe early

> intervention is just as important as medical intervention. Once you get the

> life threatening medical issues under your belt then go with it.

>

> The two are equally important.

>

> Patty didn't have the CHARGE diagnosis till she was a teenager. That was

> both good and bad. If we had known maybe we wouldn't have been so pro

> active in her early intervention.

>

> When she came home from the hospital we had services come out to the house

> that very week. They did the assessments and all. Then we had the teacher,

> PT, OT and Speech and Language Pathologist come out to our home to work with

> me, Patty, and anyone else in the home! Her teacher came out twice a

> week. She was great. They all helped me learn how to feed her, move her

> and accept all of her.

>

> By nine months old though she still wasn't holding her head, making real

> sounds, or any of that baby stuff. I did tons of research and found a

> school for the children with disabilities. I knew Patty needed more early

> on to have a better life in her future. Our school district thought their

> programs were good but I saw that they were limited. They were for the

> generic children with disabilities. So I found a school and by ten months

> old I put Patty on a bus to go to a school 40 minutes away.

>

> It killed me. It totally killed me. It absolutely killed me. I thought

> I would die of heart break. Or worse, I thought Patty would. But it was

> worth it. There she got constant attention, motion, caring, moving....

>

> She stayed at that program for about a year and a half. Often she missed

> school because of illnesses and surgeries. When she did they sent the

> teachers/therapists out to the house when she healed some.

>

> There she learned how to roll, oh dear, she learned everything. I also

> must admit that I would jump in my car and show up to check on her. And

> they didn't care! She did have summers off with her teacher only coming

> about once a week. And yes, there she learned how to walk. She also

> learned how to sign. It was an intensive but happy program. It was also a

> program that involved the entire family.

>

> But.... the children all had varying types of disabilities and Patty was

> modeling their behaviors. At the age of two she was starting to make

> guttural sounds and was trying to talk. Patty was the only hearing impaired

> child there. So I did more research.

>

> I found a school for the deaf. We had meetings and meetings and finally

> she was accepted at that program. They had four or five children who were

> either deaf or hard of hearing in the morning with three adults. It was an

> oral program. Then during lunch five " normal " children would join them, and

> about two more adults. The afternoon was still facilitated but was

> looser. It was great. Patty received all her therapies there and was

> thriving. There she learned how to talk. They also worked very closely

> with me and I did whatever they told me to and then some. There she learned

> how to read and write.

>

> I do have to say this school was over an hour away. Again, it killed

> me! But we had no choice. It was that or she wouldn't be given the vital

> learning opportunities she needed for her future as an adult. I am thankful

> we did.

>

> When she got to kindergarten age this school was next to a public

> school. In the morning she had her special class and then during lunch she

> would go to the kindergarten class with her teacher and the other class

> teacher. It was phenomenal.

>

> I think, no I know, Patty has come as far as she did because of her early

> intervention programs.

>

> It is a hard thing to weigh. What do you do, where do you send your

> child, who do you trust, who knows what to do in case of medical

> emergencies, will your child not bond with you.............

>

> The last statement I have to admit that was my biggest and most selfish

> fear, that I her mother wouldn't be with her. Would others bond more

> closely than I would be able to. That was a worry I need not have had. We

> had a close relationship and Patty knew I was her mother even when she

> couldn't talk. She loved me and knew I loved her. That was multiplied

> instead of being taken away.

>

> The only thing I would change in all of that is I would have insisted on

> having Patty keep sign language. It is her real language. Other than that

> though- I am glad we did what we did and wouldn't change anything else.

>

> Whatever you decide must come from your heart and what you know will be

> right for your child. Oh, and a was only two years older than Patty

> and we/they had her participate in all activities, parties,... They too

> became incredibly close. They are closer than most siblings and always have

> been.

>

> Good luck with everything.

>

> In the end no matter what you do remember- Life's good.

>

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

>

>

>

>

>

[Guest guest]

Bonnie,

I tink this is maybe why they are keen to get amelie off to school sooner

rather than later, so long in hospital confined to a cot and machines has

not helped her, and like Patty at 9 months there is so much she cant do at

15 months, like head holding for long, no signs of sitting or rolling, no

vocalising, just lots of smiles and wriggling around her floor space, she

loves her hydraulic chair which hold her upright very snug and supported.

thanks for sharing those painful early days of handing over your loved one

to the educational department, i too will feel panic when this arrives,

which by the sounds of it will be soon!!

love Les x

>

> These decisions are hard to make for everyone. Any advice is hard because

> all children are different. So are services and programs. Remember always

> that you do must be what you feel is right. Go with your mothers heart.

> Trust it to lead you. Having said that though I honestly believe early

> intervention is just as important as medical intervention. Once you get the

> life threatening medical issues under your belt then go with it.

>

> The two are equally important.

>

> Patty didn't have the CHARGE diagnosis till she was a teenager. That was

> both good and bad. If we had known maybe we wouldn't have been so pro

> active in her early intervention.

>

> When she came home from the hospital we had services come out to the house

> that very week. They did the assessments and all. Then we had the teacher,

> PT, OT and Speech and Language Pathologist come out to our home to work with

> me, Patty, and anyone else in the home! Her teacher came out twice a

> week. She was great. They all helped me learn how to feed her, move her

> and accept all of her.

>

> By nine months old though she still wasn't holding her head, making real

> sounds, or any of that baby stuff. I did tons of research and found a

> school for the children with disabilities. I knew Patty needed more early

> on to have a better life in her future. Our school district thought their

> programs were good but I saw that they were limited. They were for the

> generic children with disabilities. So I found a school and by ten months

> old I put Patty on a bus to go to a school 40 minutes away.

>

> It killed me. It totally killed me. It absolutely killed me. I thought

> I would die of heart break. Or worse, I thought Patty would. But it was

> worth it. There she got constant attention, motion, caring, moving....

>

> She stayed at that program for about a year and a half. Often she missed

> school because of illnesses and surgeries. When she did they sent the

> teachers/therapists out to the house when she healed some.

>

> There she learned how to roll, oh dear, she learned everything. I also

> must admit that I would jump in my car and show up to check on her. And

> they didn't care! She did have summers off with her teacher only coming

> about once a week. And yes, there she learned how to walk. She also

> learned how to sign. It was an intensive but happy program. It was also a

> program that involved the entire family.

>

> But.... the children all had varying types of disabilities and Patty was

> modeling their behaviors. At the age of two she was starting to make

> guttural sounds and was trying to talk. Patty was the only hearing impaired

> child there. So I did more research.

>

> I found a school for the deaf. We had meetings and meetings and finally

> she was accepted at that program. They had four or five children who were

> either deaf or hard of hearing in the morning with three adults. It was an

> oral program. Then during lunch five " normal " children would join them, and

> about two more adults. The afternoon was still facilitated but was

> looser. It was great. Patty received all her therapies there and was

> thriving. There she learned how to talk. They also worked very closely

> with me and I did whatever they told me to and then some. There she learned

> how to read and write.

>

> I do have to say this school was over an hour away. Again, it killed

> me! But we had no choice. It was that or she wouldn't be given the vital

> learning opportunities she needed for her future as an adult. I am thankful

> we did.

>

> When she got to kindergarten age this school was next to a public

> school. In the morning she had her special class and then during lunch she

> would go to the kindergarten class with her teacher and the other class

> teacher. It was phenomenal.

>

> I think, no I know, Patty has come as far as she did because of her early

> intervention programs.

>

> It is a hard thing to weigh. What do you do, where do you send your

> child, who do you trust, who knows what to do in case of medical

> emergencies, will your child not bond with you.............

>

> The last statement I have to admit that was my biggest and most selfish

> fear, that I her mother wouldn't be with her. Would others bond more

> closely than I would be able to. That was a worry I need not have had. We

> had a close relationship and Patty knew I was her mother even when she

> couldn't talk. She loved me and knew I loved her. That was multiplied

> instead of being taken away.

>

> The only thing I would change in all of that is I would have insisted on

> having Patty keep sign language. It is her real language. Other than that

> though- I am glad we did what we did and wouldn't change anything else.

>

> Whatever you decide must come from your heart and what you know will be

> right for your child. Oh, and a was only two years older than Patty

> and we/they had her participate in all activities, parties,... They too

> became incredibly close. They are closer than most siblings and always have

> been.

>

> Good luck with everything.

>

> In the end no matter what you do remember- Life's good.

>

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

>

>

>

>

>

[Guest guest]

Bonnie,

I tink this is maybe why they are keen to get amelie off to school sooner

rather than later, so long in hospital confined to a cot and machines has

not helped her, and like Patty at 9 months there is so much she cant do at

15 months, like head holding for long, no signs of sitting or rolling, no

vocalising, just lots of smiles and wriggling around her floor space, she

loves her hydraulic chair which hold her upright very snug and supported.

thanks for sharing those painful early days of handing over your loved one

to the educational department, i too will feel panic when this arrives,

which by the sounds of it will be soon!!

love Les x

>

> These decisions are hard to make for everyone. Any advice is hard because

> all children are different. So are services and programs. Remember always

> that you do must be what you feel is right. Go with your mothers heart.

> Trust it to lead you. Having said that though I honestly believe early

> intervention is just as important as medical intervention. Once you get the

> life threatening medical issues under your belt then go with it.

>

> The two are equally important.

>

> Patty didn't have the CHARGE diagnosis till she was a teenager. That was

> both good and bad. If we had known maybe we wouldn't have been so pro

> active in her early intervention.

>

> When she came home from the hospital we had services come out to the house

> that very week. They did the assessments and all. Then we had the teacher,

> PT, OT and Speech and Language Pathologist come out to our home to work with

> me, Patty, and anyone else in the home! Her teacher came out twice a

> week. She was great. They all helped me learn how to feed her, move her

> and accept all of her.

>

> By nine months old though she still wasn't holding her head, making real

> sounds, or any of that baby stuff. I did tons of research and found a

> school for the children with disabilities. I knew Patty needed more early

> on to have a better life in her future. Our school district thought their

> programs were good but I saw that they were limited. They were for the

> generic children with disabilities. So I found a school and by ten months

> old I put Patty on a bus to go to a school 40 minutes away.

>

> It killed me. It totally killed me. It absolutely killed me. I thought

> I would die of heart break. Or worse, I thought Patty would. But it was

> worth it. There she got constant attention, motion, caring, moving....

>

> She stayed at that program for about a year and a half. Often she missed

> school because of illnesses and surgeries. When she did they sent the

> teachers/therapists out to the house when she healed some.

>

> There she learned how to roll, oh dear, she learned everything. I also

> must admit that I would jump in my car and show up to check on her. And

> they didn't care! She did have summers off with her teacher only coming

> about once a week. And yes, there she learned how to walk. She also

> learned how to sign. It was an intensive but happy program. It was also a

> program that involved the entire family.

>

> But.... the children all had varying types of disabilities and Patty was

> modeling their behaviors. At the age of two she was starting to make

> guttural sounds and was trying to talk. Patty was the only hearing impaired

> child there. So I did more research.

>

> I found a school for the deaf. We had meetings and meetings and finally

> she was accepted at that program. They had four or five children who were

> either deaf or hard of hearing in the morning with three adults. It was an

> oral program. Then during lunch five " normal " children would join them, and

> about two more adults. The afternoon was still facilitated but was

> looser. It was great. Patty received all her therapies there and was

> thriving. There she learned how to talk. They also worked very closely

> with me and I did whatever they told me to and then some. There she learned

> how to read and write.

>

> I do have to say this school was over an hour away. Again, it killed

> me! But we had no choice. It was that or she wouldn't be given the vital

> learning opportunities she needed for her future as an adult. I am thankful

> we did.

>

> When she got to kindergarten age this school was next to a public

> school. In the morning she had her special class and then during lunch she

> would go to the kindergarten class with her teacher and the other class

> teacher. It was phenomenal.

>

> I think, no I know, Patty has come as far as she did because of her early

> intervention programs.

>

> It is a hard thing to weigh. What do you do, where do you send your

> child, who do you trust, who knows what to do in case of medical

> emergencies, will your child not bond with you.............

>

> The last statement I have to admit that was my biggest and most selfish

> fear, that I her mother wouldn't be with her. Would others bond more

> closely than I would be able to. That was a worry I need not have had. We

> had a close relationship and Patty knew I was her mother even when she

> couldn't talk. She loved me and knew I loved her. That was multiplied

> instead of being taken away.

>

> The only thing I would change in all of that is I would have insisted on

> having Patty keep sign language. It is her real language. Other than that

> though- I am glad we did what we did and wouldn't change anything else.

>

> Whatever you decide must come from your heart and what you know will be

> right for your child. Oh, and a was only two years older than Patty

> and we/they had her participate in all activities, parties,... They too

> became incredibly close. They are closer than most siblings and always have

> been.

>

> Good luck with everything.

>

> In the end no matter what you do remember- Life's good.

>

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

>

>

>

>

>