Introduction

July 25, 2002

Dr. van Dljk,

Welcome to the CHARGE listserv, I hope many of the parents you work with will

come here also. It's great to see professionals taking such a big interest, it

means a lot to us...

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Re: Therapist Needs Your Help

Hello ,

My opinion is that PECS systems or other similar systems can help when

language appears to not be developing. In a vast majority of cases, PECS

or

similar adapted systems can lead to other formal language such as

through

speaking or signing. There can be fears that using such systems may

preclude other language usage, but that is a tremendous myth.

Ann Gloyn, deafblind specialist has also talked about factors that need

to

be in place before language may start to emerge. Look for some of her

letters in the archives. They are wonderful.

I also believe that apraxia and or dysarthria can affect CHARGE kids and

reading the Apraxia-kids website offers numerous excellent resources for

information on identification of these conditions and treatment options.

If

you have not already read that site, I think it offers extremely

valuable

and reliable information.

I myself believe there are biochemical factors associated with some of

the

language difficulties in addition to deafness and blindness or

deafblindness. From my perspective, digestion and processing factors,

as

well as environmental factors (toxins and/or pathogens) are probably

linked

to some of the learning issues we see in CHARGE

Best luck with facilitating your CHARGEr's language growth. It is

critical

to other development.

Mom to Kendra, 15, CHARGE, , 21 and Camille, 24 Southern

California

July 25, 2002

Dr. van Dljk,

Welcome to the CHARGE listserv, I hope many of the parents you work with will

come here also. It's great to see professionals taking such a big interest, it

means a lot to us...

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

Visit the Weir Website: http://personal.nbnet.nb.ca/gweir

ICQ# 1426476

Re: Therapist Needs Your Help

Hello ,

My opinion is that PECS systems or other similar systems can help when

language appears to not be developing. In a vast majority of cases, PECS

or

similar adapted systems can lead to other formal language such as

through

speaking or signing. There can be fears that using such systems may

preclude other language usage, but that is a tremendous myth.

Ann Gloyn, deafblind specialist has also talked about factors that need

to

be in place before language may start to emerge. Look for some of her

letters in the archives. They are wonderful.

I also believe that apraxia and or dysarthria can affect CHARGE kids and

reading the Apraxia-kids website offers numerous excellent resources for

information on identification of these conditions and treatment options.

If

you have not already read that site, I think it offers extremely

valuable

and reliable information.

I myself believe there are biochemical factors associated with some of

the

language difficulties in addition to deafness and blindness or

deafblindness. From my perspective, digestion and processing factors,

as

well as environmental factors (toxins and/or pathogens) are probably

linked

to some of the learning issues we see in CHARGE

Best luck with facilitating your CHARGEr's language growth. It is

critical

to other development.

Mom to Kendra, 15, CHARGE, , 21 and Camille, 24 Southern

California

July 26, 2002

Jan van Dijk: You need no introduction for me, I have been following your work

for nearly 2 decades. What

an honour and privilege to have you here on the list! I continue to learn from

these parents; it is an

incredible journey.

ANN GLOYN, Deafblind and Spec.Ed. Specialist, Canada

(+home of Wayne Gretsky...do you understand guys, van Dijk IS like Gretsky to

me!)

Jan van DIjk wrote:

> Dear members of the CHARGE LIST.

>

> Recently I have joined this very active list. I understand that it is

> mainly a parent group who exchanges information. As a professional for

> more than 4 decades in the field of children with multiple disabilities,

> I have become very much aware of the fact how crucial parent's role is

> when it comes to the education of children with disabilities. This

> sounds as we call it " opening an open door " , but it is not. I visit many

> countries in the world where parents sit literally in the " waiting room "

> whilst their child is being assessed by profies!

> I have a special reason to join the list, because I have been invited to

> attend as a guest presenter your conference next year. Reading your

> discussions and questions will help me to prepare my contribution.

> It is very likely that by next year I will have finished my 2nd cd

> rom.This will deal with the problems of challenging behavior (the first

> one is on assessment of children with multiple impairments, including

> one child with CHARGE)

> There is no yet in The Netherlands a Charge foundation as you have in

> the US, but we have an active working party of parents. I will meet them

> on August 27 and make them are of this wonderful service list.

> When I think I can offer my experience and knowledge to help you to

> solve one of the problems you put on the list, I will certainly pop up

> with an idea.

> Jan van Dijk (prof.dr.)

> The Netherlands

>

July 26, 2002

Jan van Dijk: You need no introduction for me, I have been following your work

for nearly 2 decades. What

an honour and privilege to have you here on the list! I continue to learn from

these parents; it is an

incredible journey.

ANN GLOYN, Deafblind and Spec.Ed. Specialist, Canada

(+home of Wayne Gretsky...do you understand guys, van Dijk IS like Gretsky to

me!)

Jan van DIjk wrote:

> Dear members of the CHARGE LIST.

>

> Recently I have joined this very active list. I understand that it is

> mainly a parent group who exchanges information. As a professional for

> more than 4 decades in the field of children with multiple disabilities,

> I have become very much aware of the fact how crucial parent's role is

> when it comes to the education of children with disabilities. This

> sounds as we call it " opening an open door " , but it is not. I visit many

> countries in the world where parents sit literally in the " waiting room "

> whilst their child is being assessed by profies!

> I have a special reason to join the list, because I have been invited to

> attend as a guest presenter your conference next year. Reading your

> discussions and questions will help me to prepare my contribution.

> It is very likely that by next year I will have finished my 2nd cd

> rom.This will deal with the problems of challenging behavior (the first

> one is on assessment of children with multiple impairments, including

> one child with CHARGE)

> There is no yet in The Netherlands a Charge foundation as you have in

> the US, but we have an active working party of parents. I will meet them

> on August 27 and make them are of this wonderful service list.

> When I think I can offer my experience and knowledge to help you to

> solve one of the problems you put on the list, I will certainly pop up

> with an idea.

> Jan van Dijk (prof.dr.)

> The Netherlands

>

July 26, 2002

Jan van Dijk: You need no introduction for me, I have been following your work

for nearly 2 decades. What

an honour and privilege to have you here on the list! I continue to learn from

these parents; it is an

incredible journey.

ANN GLOYN, Deafblind and Spec.Ed. Specialist, Canada

(+home of Wayne Gretsky...do you understand guys, van Dijk IS like Gretsky to

me!)

Jan van DIjk wrote:

> Dear members of the CHARGE LIST.

>

> Recently I have joined this very active list. I understand that it is

> mainly a parent group who exchanges information. As a professional for

> more than 4 decades in the field of children with multiple disabilities,

> I have become very much aware of the fact how crucial parent's role is

> when it comes to the education of children with disabilities. This

> sounds as we call it " opening an open door " , but it is not. I visit many

> countries in the world where parents sit literally in the " waiting room "

> whilst their child is being assessed by profies!

> I have a special reason to join the list, because I have been invited to

> attend as a guest presenter your conference next year. Reading your

> discussions and questions will help me to prepare my contribution.

> It is very likely that by next year I will have finished my 2nd cd

> rom.This will deal with the problems of challenging behavior (the first

> one is on assessment of children with multiple impairments, including

> one child with CHARGE)

> There is no yet in The Netherlands a Charge foundation as you have in

> the US, but we have an active working party of parents. I will meet them

> on August 27 and make them are of this wonderful service list.

> When I think I can offer my experience and knowledge to help you to

> solve one of the problems you put on the list, I will certainly pop up

> with an idea.

> Jan van Dijk (prof.dr.)

> The Netherlands

>

July 26, 2002

Hello,

I am a 48 year old charger. Nice to have you on the list.

Kay

> Re: Therapist Needs Your Help

>

> Hello ,

>

> My opinion is that PECS systems or other similar systems can help when

> language appears to not be developing. In a vast majority of cases, PECS

> or

> similar adapted systems can lead to other formal language such as

> through

> speaking or signing. There can be fears that using such systems may

> preclude other language usage, but that is a tremendous myth.

>

> Ann Gloyn, deafblind specialist has also talked about factors that need

> to

> be in place before language may start to emerge. Look for some of her

> letters in the archives. They are wonderful.

>

> I also believe that apraxia and or dysarthria can affect CHARGE kids and

>

> reading the Apraxia-kids website offers numerous excellent resources for

>

> information on identification of these conditions and treatment options.

> If

> you have not already read that site, I think it offers extremely

> valuable

> and reliable information.

>

> I myself believe there are biochemical factors associated with some of

> the

> language difficulties in addition to deafness and blindness or

> deafblindness. From my perspective, digestion and processing factors,

> as

> well as environmental factors (toxins and/or pathogens) are probably

> linked

> to some of the learning issues we see in CHARGE

>

> Best luck with facilitating your CHARGEr's language growth. It is

> critical

> to other development.

>

> Mom to Kendra, 15, CHARGE, , 21 and Camille, 24 Southern

> California

>

July 26, 2002

Hello,

I am a 48 year old charger. Nice to have you on the list.

Kay

> Re: Therapist Needs Your Help

>

> Hello ,

>

> My opinion is that PECS systems or other similar systems can help when

> language appears to not be developing. In a vast majority of cases, PECS

> or

> similar adapted systems can lead to other formal language such as

> through

> speaking or signing. There can be fears that using such systems may

> preclude other language usage, but that is a tremendous myth.

>

> Ann Gloyn, deafblind specialist has also talked about factors that need

> to

> be in place before language may start to emerge. Look for some of her

> letters in the archives. They are wonderful.

>

> I also believe that apraxia and or dysarthria can affect CHARGE kids and

>

> reading the Apraxia-kids website offers numerous excellent resources for

>

> information on identification of these conditions and treatment options.

> If

> you have not already read that site, I think it offers extremely

> valuable

> and reliable information.

>

> I myself believe there are biochemical factors associated with some of

> the

> language difficulties in addition to deafness and blindness or

> deafblindness. From my perspective, digestion and processing factors,

> as

> well as environmental factors (toxins and/or pathogens) are probably

> linked

> to some of the learning issues we see in CHARGE

>

> Best luck with facilitating your CHARGEr's language growth. It is

> critical

> to other development.

>

> Mom to Kendra, 15, CHARGE, , 21 and Camille, 24 Southern

> California

>

July 28, 2002

Ginny,

I am the parent of an 18 year old boy with CHARGE. He is not as

high functioning and attends a special needs school program. I was curious as

to when and how you got the diagnosis of neutrogenic bladder? My son started

to have trouble with urinary incontinence and frequency when he was around

15. It is now a daily thing. I am curious as to how your daughters problems

in this area manifested themselves. I just love it when the parent of an

older CHARGE'r comes on board! WELCOME!

July 28, 2002

Ginny,

I am the parent of an 18 year old boy with CHARGE. He is not as

high functioning and attends a special needs school program. I was curious as

to when and how you got the diagnosis of neutrogenic bladder? My son started

to have trouble with urinary incontinence and frequency when he was around

15. It is now a daily thing. I am curious as to how your daughters problems

in this area manifested themselves. I just love it when the parent of an

older CHARGE'r comes on board! WELCOME!

July 29, 2002

welcome to the group---hope to meet you in cleveland next summer.

mom to Timmy almost 7 ChARGE, keegan 4, liam 21 months, wife to pat

NJ

Introduction

> Hello, all!

> We are the parents of 16-year-old . Steph is fairly high

> functioning. She has bilateral colobomas of the optic nerve, left

> microphthalmia with vision in her better eye of 20/150. She has a

moderate

> conductive hearing loss, left facial palsy (from one year of age), growth

> delay (with delayed puberty), and a neurogenic bladder. She has fine and

> gross motor delays. Oh yes, and she has ADD--which tends to be a bigger

> challenge than everything else.

> Steph is ready to start her junior year in high school. She is in

> college prep classes, and has a full time aide. The aide helps her with

> notetaking, keeping with classwork, juggling materials and staying

> organized. She has a resource class one period a day. She loves math and

> German, and wants to be a math teacher. She does pretty well in school;

she

> carries a B average, but could do better. She is obsessed with the

> Backstreet Boys, NSync, and anything else associated with pop music. When

> she has to give an example in discussions in class, she uses boyband

> examples instead of real life examples, because her experience is so

> limited.

> She has a very sharp, sarcastic sense of humor. But she can also be

> belligerant and ill-tempered. I'm told that goes along with being a

> teenager. But she's my only child, so I'll have to take their word for

it.

> As with many other CHARGE kids, she has " friends " at school, but they

don't

> carry over to home. It breaks my heart. We try to keep her busy with

other

> activities -- although it's harder now than when she was little. She

> belongs to Girl Scouts, youth group at church, German Club and Key Club.

> But no real friendships there either. This summer, she's volunteering at

a

> summer camp for disabled kids in Cincinnati. She works with pre-school

age

> kids, and seems to be enjoying it.

> I look forward to reading about your families.

> Ginny and Tom, Fairfield, Ohio

>

July 30, 2002

Hello and welcome. I am 48 years old and have charge. I have bilateral

colombomas of iris, retina, and optic nerves, along with complication of

glaucoma and only have light and shadow vision. I have severe hearing loss

in one ear and now I have moderate loss in the other ear, not due to CHARGE.

I have swallowing difficulties, the nasal problems, balance problems, and

had the female problems that goes along with it also.

I graduated high school in 1972 from the Alabama School For the Blind,

second in my class. I attended college for 2 years and then trade school.

After working for a short time as a medical transcriptionist and a little

longer as a telephone operator for a un iversity, I went to work for social

security. I worked there for over 15 years and then went out on disability

in 1993.

I now have two email lists and run a Christian forum.

Kay

Introduction

> Hello, all!

> We are the parents of 16-year-old . Steph is fairly high

> functioning. She has bilateral colobomas of the optic nerve, left

> microphthalmia with vision in her better eye of 20/150. She has a

moderate

> conductive hearing loss, left facial palsy (from one year of age), growth

> delay (with delayed puberty), and a neurogenic bladder. She has fine and

> gross motor delays. Oh yes, and she has ADD--which tends to be a bigger

> challenge than everything else.

> Steph is ready to start her junior year in high school. She is in

> college prep classes, and has a full time aide. The aide helps her with

> notetaking, keeping with classwork, juggling materials and staying

> organized. She has a resource class one period a day. She loves math and

> German, and wants to be a math teacher. She does pretty well in school;

she

> carries a B average, but could do better. She is obsessed with the

> Backstreet Boys, NSync, and anything else associated with pop music. When

> she has to give an example in discussions in class, she uses boyband

> examples instead of real life examples, because her experience is so

> limited.

> She has a very sharp, sarcastic sense of humor. But she can also be

> belligerant and ill-tempered. I'm told that goes along with being a

> teenager. But she's my only child, so I'll have to take their word for

it.

> As with many other CHARGE kids, she has " friends " at school, but they

don't

> carry over to home. It breaks my heart. We try to keep her busy with

other

> activities -- although it's harder now than when she was little. She

> belongs to Girl Scouts, youth group at church, German Club and Key Club.

> But no real friendships there either. This summer, she's volunteering at

a

> summer camp for disabled kids in Cincinnati. She works with pre-school

age

> kids, and seems to be enjoying it.

> I look forward to reading about your families.

> Ginny and Tom, Fairfield, Ohio

>

August 16, 2002

Hi to , Christian, Ingrid and .

I can't answer your questions but I know the listserv will provide some insights

for you.

Welcome!

Anne, mom of Penina (CHArgE, who will be 6 years old on Sunday - she is so

excited!)

August 16, 2002

Hi to , Christian, Ingrid and .

I can't answer your questions but I know the listserv will provide some insights

for you.

Welcome!

Anne, mom of Penina (CHArgE, who will be 6 years old on Sunday - she is so

excited!)

August 16, 2002

My child's facial palsy was present at birth. Hopefully some of the medical

team will respond to your question. Regardless, best wishes to you and your

family while you figure this out.

Kim Lauger

Mom to Dylan 6 - CHARGE, Kayla 11, Tyler 14, wife to Roy

----------

>From: tclobaugh@...

>To: CHARGE

>Subject: Introduction

>Date: Fri, Aug 16, 2002, 1:14 PM

>

> Howdy from Oklahoma! We are the parents of two wonderful girls,

> 3-year-old and 7-month-old , who is being evaluated for

> CHARGE. was born on 1/3/02 and quickly diagnosed with

> tracheoesophageal fistula, esophageal atresia and a PDA (all 3 now

> thankfully repaired). Since coming home from NICU, we have learned

> that she has a profound hearing loss and unilateral choanal atresia.

> She has a vertebral anomoly that her doctors consider insignificant,

> ear anomolies, low muscle tone in her trunk, slow postnatal growth and

> developmental delays. Her kidney ultrasound and eye exam were normal.

> VATER is the other association being considered for (fun fact:

> one of our geneticists is Burhan Say, who wrote the original VATER

> paper in 1968 -- amazing man). We're not sure why has not been

> diagnosed at this time, except for the apparent lack of experience

> with CHARGE.

>

> Of most immediate concern to us is information regarding facial

> palsy. 's 7th nerve palsy appeared on her left side when she was

> 2 1/2 months old. One day it wasn't there, the next day it was. Over

> the course of the next 3 months, it progressed slowly to her right

> side. We have pictures documenting the change from birth to present.

> We've been told everything, from it's viral to mitochondrial to

> terminal. We were sent to Dallas for an EMG when motor neuron disease

> was the diagnosis of the day. While that was fortunately ruled out,

> the 3 neurologists involved still seem to have differing opinions.

> The information we were originally given on CHARGE stated that CHARGE

> facial palsy would be unilateral, present at birth, and

> non-progressive. Have any of you experienced a progressive type of

> palsy? One that wasn't present at birth? I've already read that it

> can be bilateral. Do you have any suggestions for us? We don't

> really know what to do next, and apparently neither does our medical

> team. Our local neurologist has ordered a couple of other tests (for

> spinal muscular atrophy and genetic mitochondrial test), but doesn't

> expect to find anything.

>

> Thanks in advance for your input.

> Christian & Ingrid Lobaugh, frightened & frustrated parents to

> (3) & (7 months - CHARGE???)

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

August 16, 2002