Re: Need advice, pls!!

[Guest guest]

Hi Les, gorgeous Amelie, Jodi and the rest

I know.. it's a slow process the PT.. Slow motioned..

What I fear is that we *might* be missing something here.. and

that's why I'm asking for a " brainstorming " here, looking for a

bright new idea..

The problem is that despite Galway being the forth largest city in

Ireland (believe it or not!) the paeditrician service in this

country is so poor (NO endo, no Speech & lang. terapist,no paed.

cardio..) that every time that Aidan requires a specialised check-up

or a test, we have to go to Dublin, which involves a 4 hour journey

through a country road!!! (And it could be worse! If you're from the

north, ie Donegal, it's a 6 hour trip!!)

And staying here in Galway means that *I* have to provide doctors,

PT, OT, etc with valid information about CHARGE 'cause they have

never heard of it before!..and it's a VERY exasperating situation..

You wouldn't believe..

So, even if what we are doing is " right " , maybe there is SOMETHING

ELSE that we could be doing that they don't know or they haven't

thought of..

And that's why I post this question to the list.. to see if in the

more accesible services in other countries they have exercised your

children in a different way or with different artifacts..

Again, any idea is more than welcome.. Enlighten me, pls!

All the best for all,

, mum to Little Warrior AIDAN (1 yr-old, 10 months corrected)

[Guest guest]

Hi Les, gorgeous Amelie, Jodi and the rest

I know.. it's a slow process the PT.. Slow motioned..

What I fear is that we *might* be missing something here.. and

that's why I'm asking for a " brainstorming " here, looking for a

bright new idea..

The problem is that despite Galway being the forth largest city in

Ireland (believe it or not!) the paeditrician service in this

country is so poor (NO endo, no Speech & lang. terapist,no paed.

cardio..) that every time that Aidan requires a specialised check-up

or a test, we have to go to Dublin, which involves a 4 hour journey

through a country road!!! (And it could be worse! If you're from the

north, ie Donegal, it's a 6 hour trip!!)

And staying here in Galway means that *I* have to provide doctors,

PT, OT, etc with valid information about CHARGE 'cause they have

never heard of it before!..and it's a VERY exasperating situation..

You wouldn't believe..

So, even if what we are doing is " right " , maybe there is SOMETHING

ELSE that we could be doing that they don't know or they haven't

thought of..

And that's why I post this question to the list.. to see if in the

more accesible services in other countries they have exercised your

children in a different way or with different artifacts..

Again, any idea is more than welcome.. Enlighten me, pls!

All the best for all,

, mum to Little Warrior AIDAN (1 yr-old, 10 months corrected)

[Guest guest]

Pat

its difficult to say, i feel for you and the situation you are in, we

drive 10 minutes to a specialised childrens hospital, where all

Amelie's consultants are, so i cant imagine how frustrating this is

for you and little warrior Aidan,

What about school?? i ask this beacause Amelie will go part time in

January aged 2, and whilst at first i thought this is too soon, I

think now it will be better for her, because all the OT SALT PT and

MSI teachers will be on hand and she will get more input than she is

getting at home. So is there not a facility through schooling or is

that as bad as the hospital situation??

How do other special needs families go on, it sounds really bad in

this day and age, have you contacted SENSE ? or local MP to ask what

they are going to do about the situation.

you may have already thought of this lot, but I am out of ideas, maybe

Flo or is will have ideas from the UK point of view, ?? I hope so

take care Les

> Hi Les, gorgeous Amelie, Jodi and the rest

>

> I know.. it's a slow process the PT.. Slow motioned..

>

> What I fear is that we *might* be missing something here.. and

> that's why I'm asking for a " brainstorming " here, looking for a

> bright new idea..

>

> The problem is that despite Galway being the forth largest city in

> Ireland (believe it or not!) the paeditrician service in this

> country is so poor (NO endo, no Speech & lang. terapist,no paed.

> cardio..) that every time that Aidan requires a specialised check-up

> or a test, we have to go to Dublin, which involves a 4 hour journey

> through a country road!!! (And it could be worse! If you're from the

> north, ie Donegal, it's a 6 hour trip!!)

>

> And staying here in Galway means that *I* have to provide doctors,

> PT, OT, etc with valid information about CHARGE 'cause they have

> never heard of it before!..and it's a VERY exasperating situation..

> You wouldn't believe..

>

> So, even if what we are doing is " right " , maybe there is SOMETHING

> ELSE that we could be doing that they don't know or they haven't

> thought of..

>

> And that's why I post this question to the list.. to see if in the

> more accesible services in other countries they have exercised your

> children in a different way or with different artifacts..

>

> Again, any idea is more than welcome.. Enlighten me, pls!

>

> All the best for all,

>

>

> , mum to Little Warrior AIDAN (1 yr-old, 10 months corrected)

>

>

>

>

>

>

>

>

>

>

>

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[Guest guest]

Pat, another thought...have you tried using a swing with Aidan? I

remember being put on a swing at therapy which was like a

large flat board suspended from a support. He would lie on this on

his tummy, then later they sat him on it while they GENTLY rocked

it. They also encouraged me to use a swing at home, which he LOVED.

Another thing we used was a large ball which he would lie on his

tummy and the therapist would roll him forward and have him lean on

his hands. At that time he lacked the instinct to put his arms out

to protect himself and this not only helped him develop that when he

saw the floor coming toward him, but also developed upper arm

strength.

What other private agencies are available in your area? For example,

Easter Seals is available nationally in America (as well as in

Australia as was posted here earlier) and they have therapy as well,

and Shriner's Hospital here in America services children with

orthopedic problems. Are there some agencies like this where you

live? There were a number of places open to us for therapeutic

services when was younger because we broke it down by his

individual disabilities. He has cerebral palsy and was diagnosed

with mental retardation at age 4, so he was qualified to receive

services from the Association of Retarded Citizens as well as United

Cerebral Palsy; private hospitals like Shriner's for ortho problems

and ish Rite for speech therapy.

I had no idea of the state of care where you are in Ireland. After

reading your post, I found a website where this problem was

addressed in a parliamentary debate. When I lived in Hawaii, the

family of a special needs child sued the state for failure to

provide adequate services for their child. As a result, the family

won and the state system was totally revamped to stringent

guidelines and was under close scrutiny of the courts (namely the

department of education). At that time I was also working in a

special education classroom and boy, was everyone dotting their " i " s

and crossing their " t " s. Well, that was all well and good, but there

was no money to support this venture. As a result, spending on

special education increased 3x what it was at the time of the court

case.

In the article I read about Galway, all of the money for disability

services was being allocated to adults and not children. Why don't

all of the parents of special needs children get together and create

a class action lawsuit similar to the Hawaii Felix Consent decree

against the government? It is a shame to ignore these kids in a

critical time in their developments. Anyway, sorry for the rant and

I hope we all can help you out as much as we can here!

[Guest guest]

Pat, another thought...have you tried using a swing with Aidan? I

remember being put on a swing at therapy which was like a

large flat board suspended from a support. He would lie on this on

his tummy, then later they sat him on it while they GENTLY rocked

it. They also encouraged me to use a swing at home, which he LOVED.

Another thing we used was a large ball which he would lie on his

tummy and the therapist would roll him forward and have him lean on

his hands. At that time he lacked the instinct to put his arms out

to protect himself and this not only helped him develop that when he

saw the floor coming toward him, but also developed upper arm

strength.

What other private agencies are available in your area? For example,

Easter Seals is available nationally in America (as well as in

Australia as was posted here earlier) and they have therapy as well,

and Shriner's Hospital here in America services children with

orthopedic problems. Are there some agencies like this where you

live? There were a number of places open to us for therapeutic

services when was younger because we broke it down by his

individual disabilities. He has cerebral palsy and was diagnosed

with mental retardation at age 4, so he was qualified to receive

services from the Association of Retarded Citizens as well as United

Cerebral Palsy; private hospitals like Shriner's for ortho problems

and ish Rite for speech therapy.

I had no idea of the state of care where you are in Ireland. After

reading your post, I found a website where this problem was

addressed in a parliamentary debate. When I lived in Hawaii, the

family of a special needs child sued the state for failure to

provide adequate services for their child. As a result, the family

won and the state system was totally revamped to stringent

guidelines and was under close scrutiny of the courts (namely the

department of education). At that time I was also working in a

special education classroom and boy, was everyone dotting their " i " s

and crossing their " t " s. Well, that was all well and good, but there

was no money to support this venture. As a result, spending on

special education increased 3x what it was at the time of the court

case.

In the article I read about Galway, all of the money for disability

services was being allocated to adults and not children. Why don't

all of the parents of special needs children get together and create

a class action lawsuit similar to the Hawaii Felix Consent decree

against the government? It is a shame to ignore these kids in a

critical time in their developments. Anyway, sorry for the rant and

I hope we all can help you out as much as we can here!

[Guest guest]

Pat, another thought...have you tried using a swing with Aidan? I

remember being put on a swing at therapy which was like a

large flat board suspended from a support. He would lie on this on

his tummy, then later they sat him on it while they GENTLY rocked

it. They also encouraged me to use a swing at home, which he LOVED.

Another thing we used was a large ball which he would lie on his

tummy and the therapist would roll him forward and have him lean on

his hands. At that time he lacked the instinct to put his arms out

to protect himself and this not only helped him develop that when he

saw the floor coming toward him, but also developed upper arm

strength.

What other private agencies are available in your area? For example,

Easter Seals is available nationally in America (as well as in

Australia as was posted here earlier) and they have therapy as well,

and Shriner's Hospital here in America services children with

orthopedic problems. Are there some agencies like this where you

live? There were a number of places open to us for therapeutic

services when was younger because we broke it down by his

individual disabilities. He has cerebral palsy and was diagnosed

with mental retardation at age 4, so he was qualified to receive

services from the Association of Retarded Citizens as well as United

Cerebral Palsy; private hospitals like Shriner's for ortho problems

and ish Rite for speech therapy.

I had no idea of the state of care where you are in Ireland. After

reading your post, I found a website where this problem was

addressed in a parliamentary debate. When I lived in Hawaii, the

family of a special needs child sued the state for failure to

provide adequate services for their child. As a result, the family

won and the state system was totally revamped to stringent

guidelines and was under close scrutiny of the courts (namely the

department of education). At that time I was also working in a

special education classroom and boy, was everyone dotting their " i " s

and crossing their " t " s. Well, that was all well and good, but there

was no money to support this venture. As a result, spending on

special education increased 3x what it was at the time of the court

case.

In the article I read about Galway, all of the money for disability

services was being allocated to adults and not children. Why don't

all of the parents of special needs children get together and create

a class action lawsuit similar to the Hawaii Felix Consent decree

against the government? It is a shame to ignore these kids in a

critical time in their developments. Anyway, sorry for the rant and

I hope we all can help you out as much as we can here!

[Guest guest]

Pat-

Its really hard to say what Aidan needs without seeing him, but how

about referring your PT to this listserve. I found this listserve

when I had a student who had CHARGE, and I didn't know what to do

(very long story, but he had many many issues and it was not

straightforward. In terms of some of the things that Aidan will

need, basic PT training can help. However, I know that NOTHING in

CHARGE is basic, so that is why I would refer your PT here.

This may be speaking out turn, but I know Amy (Max's mom)

has " therapy time " with Max everyday, and he seems to be doing

well. Perhaps she would be able to tell you specifically what she

is doing with Max (I know its LOTS of tummy time--there are pictures

to prove it).

Aidan will come into things in his own time. Do you have a boppy

pillow (a crescent shaped pillow)? You could sit Aidan up in that

for some support. If it is not enough, 2 boppies stacked on each

other give more support, and up higher on the trunk. That would let

him focus on his head control and fine motor skills also.

I hope this helps. Good luck!

Kate (PT in NY)

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[Guest guest]

Pat-

Its really hard to say what Aidan needs without seeing him, but how

about referring your PT to this listserve. I found this listserve

when I had a student who had CHARGE, and I didn't know what to do

(very long story, but he had many many issues and it was not

straightforward. In terms of some of the things that Aidan will

need, basic PT training can help. However, I know that NOTHING in

CHARGE is basic, so that is why I would refer your PT here.

This may be speaking out turn, but I know Amy (Max's mom)

has " therapy time " with Max everyday, and he seems to be doing

well. Perhaps she would be able to tell you specifically what she

is doing with Max (I know its LOTS of tummy time--there are pictures

to prove it).

Aidan will come into things in his own time. Do you have a boppy

pillow (a crescent shaped pillow)? You could sit Aidan up in that

for some support. If it is not enough, 2 boppies stacked on each

other give more support, and up higher on the trunk. That would let

him focus on his head control and fine motor skills also.

I hope this helps. Good luck!

Kate (PT in NY)

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