Deaf-Blind Awareness week -- beware... this is long

[Guest guest]

Michele:

Looks great to me. You have gotten the point across well without belaboring

the point! Can I use this for my next school meeting? (I don't really want

to wait to try and get the article later.) You have stated so much that I

already have told the case conference team. Maybe your words will get

through to them better than mine.

Just an FYI: Totally frustrated now with school. had homework for

social studies and math. Both were typical workbook pages, probably in

about 12-pt font. Her IEP states specifically a minimum of 16-pt font, and

the recent vision eval states she prefers (less effort/strain) 24-pt. These

papers are not even close!! GRRRRR!!! I made copies to give to the LEA and

I think I'll copy and highlight the page of the IEP stating the font size.

What's most aggrevating is that this was brought to their attention back in

October.

Thanks for the great article!

Friends in CHARGE,

Marilyn Ogan

Mom of (14 yrs, CHARGE+ JRA)

Mom of Ken (17 yrs, Asperger's)

Wife of Rick

oganm@...

[Guest guest]

Powerful and well-stated and very, very, very, VERY true.

>

> I am asking for your review of the following article I've written for a

> Deaf-blind Awareness week publication in IL. It's a bit long so delete and

> move on if you don't have time. I just want to be sure I'm clear and

> accurate. Thanks in advance to any of you who have the energy to review

> this for me!

>

> Michele W

> Aubrie's mom

>

> CHARGE syndrome is becoming one of the leading causes of congenital

> deaf-blindness. Consider this. At its worst, CHARGE strips a child of all

> senses. Vision, hearing, and balance can be absent due to malformations of

> the eye and any or all parts of the inner and middle ear. Taste can be

> eliminated due to prohibition of oral feeding caused by swallowing

> problems,

> severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be

> absent due to problems with the olfactory nerve. Touch can be reduced due

> to severe sensory defensiveness and integration issues.

>

> Obviously, a child with such severe sensory limitations will be a

> challenge

> in the classroom. How do you tap into a child's intellect when all of the

> sensory pathways are impeded? The question boggles my mind. I'm speechless

> at the thought of it. (Those who know me understand that I am not often

> speechless!)

>

> Brown, a California Deaf-Blind Educator and CHARGE Specialist put it

> this way: CHARGE is " medically and developmentally, one of the most

> complex

> conditions that we know. Children with CHARGE are also likely to be

> amongst

> the most truly 'multi sensory impaired' people you will ever meet, having

> difficulties not just with vision and hearing but also with the senses

> that

> perceive balance, touch, temperature, pain, pressure, and smell. The many

> different anomalies associated with CHARGE will each impose different,

> varying, and often, conflicting demands upon the child. "

>

> With the worst-case scenario in mind, my daughter is doing incredibly

> well.

> She can see out of one eye. She can hear with one ear. After using a

> feeding tube in infancy, she can now eat virtually anything. After years

> of

> sensory issues, she is gaining more and more control over her own sensory

> state. Her balance is a bit shaky - but it's there.

>

> To the outsider, to the untrained eye, she functions well. She seems to

> see

> " okay " . She seems to hear " just fine " . She gets around " okay " . Everything

> looks different - but " okay " . What is unseen is the invisible effort it

> takes for her to appear to function so well. It's hard to imagine the

> effort it takes to keep her body straight in the chair, to keep her visual

> and auditory attention focused on the task at hand, to keep her pencil

> steady in her unusually limber and uncoordinated little hand. She is

> getting sensory input from all 5 senses - but all of the information is

> slightly skewed or incomplete. Somehow, she manages to create a fairly

> decent, but unique, view of her world from all of that incomplete and

> slightly inaccurate input.

>

> How do we ensure that the view she is creating and the concepts she is

> developing are correct? How to we ensure that she gets as accurate and

> complete information as possible? How do we adjust her day for the fatigue

> that comes from all the effort it takes to simply " be " ? How do we fit all

> of the necessary therapies (OT, PT, speech, O & M, and more) into her school

> day without losing time for academics? How do we support her social

> development when her experience of the world is so vastly different from

> her

> age-mates?

>

> I can assure you that a typical classroom teacher in a typical school

> district with typically available special education supports cannot answer

> the above questions. Specialists in deaf-blindness with experience and

> understanding of the complexities of the multiple impairments of CHARGE

> are

> absolutely necessary for the success of my daughter and other children

> like

> her. Specialized supports must be available around the country in order

> for

> children with multiple and complex impairments, including deaf-blindness,

> to

> be understood and to be supported to succeed.

>

>

[Guest guest]

Thank you, !

Michele

[Guest guest]

Marilyn-

Of course, you can share that with your school district. I agree that

sometimes they need to hear it from more than " just us " . The more voices

stating the same (even the obvious), the more likely it is that they will

get the message.

Re: font size. Can you make a complaint to the state board of ed?? This is

such a simple and blatant violation. Perhaps by taking steps against this

obvious and clear violation it will bring attention to the less clear

violations as well. I may be off-base as I'm not totally clear on how and

when formal complaints are warranted.

Michele W

[Guest guest]

Very well though out, presented and written.

Thank you for posting it- you have my 110% agreement, admiration and

appreciation. It is exactly as it is. Your words are a gift to me.

with love,

yuka

[Guest guest]

Michele,

Like , I was just thinking " true, true, true to every sentence. Thank

you for putting into words what I have been trying to articulate for some

time. OK if I copy this to 's teacher (once your article is out of

course?)

Keep up the good work!

Flo

>

> Thank you, !

>

> Michele

>

>

[Guest guest]

Flo-

This won't be printed til June! It's fine to share it in advance. This is

for the statewide newsletter of our DB Project for DB Awareness Week. No

big copyright rules or any problem in sharing it elsewhere.

Michele

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Flo Njeru

Sent: Saturday, January 27, 2007 6:35 PM

To: CHARGE

Subject: Re: Deaf-Blind Awareness week -- beware... this is long

Michele,

Like , I was just thinking " true, true, true to every sentence. Thank

you for putting into words what I have been trying to articulate for some

time. OK if I copy this to 's teacher (once your article is out of

course?)

Keep up the good work!

Flo

On 27/01/07, Michele Westmaas <momonamission@

<mailto:momonamission%40verizon.net> verizon.net> wrote:

>

> Thank you, !

>

> Michele

>

>

[Guest guest]

Thank you . I am printing this as I type. Know J's teachers get it

(they have created a sensory room for her as she has moved up a year!!!) but

any further info always helpful.

Love that you are so inspired by Aubrie in your writings which of course are

great for the rest of us.

Hugs to you.....

Flo

>

> Flo-

>

> This won't be printed til June! It's fine to share it in advance. This is

> for the statewide newsletter of our DB Project for DB Awareness Week. No

> big copyright rules or any problem in sharing it elsewhere.

>

> Michele

>

> _____

>

> From: CHARGE <CHARGE%40yahoogroups.com> [mailto:

> CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of

> Flo Njeru

> Sent: Saturday, January 27, 2007 6:35 PM

> To: CHARGE <CHARGE%40yahoogroups.com>

> Subject: Re: Deaf-Blind Awareness week -- beware... this is long

>

> Michele,

> Like , I was just thinking " true, true, true to every sentence. Thank

> you for putting into words what I have been trying to articulate for some

> time. OK if I copy this to 's teacher (once your article is out of

> course?)

>

> Keep up the good work!

> Flo

>

> On 27/01/07, Michele Westmaas <momonamission@

> <mailto:momonamission%40verizon.net> verizon.net> wrote:

> >

> > Thank you, !

> >

> > Michele

> >

> >

[Guest guest]

Flo-

It's it lovely to have a crew around Jess who get it?? There are so many

levels of " getting it " . I'm learning more and more about how much we can't

even begin to understand since we can't be inside their skin. Don't you

wish you could change places just for a short time? Just long enough to

really get it??

Hugs back at'cha!

Michele

[Guest guest]

Ahhh, yes Michele, would love to swap places with the little horror just for

a day so I can try to get what she is at. Most of the time I am so baffled

by her carry on that it would just be really useful to know what is going on

in her psyche. Much as we understand our kids more than most, we truly

spend hours, days, weeks, months, years just trying to get to grips with

what goes on in their worlds, mostly to little avail. Right now, am at a

loss for what to do to maximise that girl's future while she is at such an

odd place dominated by sleep issues, OCDs, delayed language and development

and being 6. All these seem to interact and get worse if all present at

same time - eg no sleep = increased OCDs, some of which are related to being

6 (eg - don't laugh Lesley - touching boobs and bums!!!! and she is not

fussy whose boobs and bum she touches so it is most embarassing!!! This is

driving me insane but we are still determined to open out all the social

opportunities we can when we can in view of all the issues. We keep missing

out on tickets for sign interpreted theatre thanks to her sleep horrors.

Everything crossed (and now going to bed

.............................................

Flo!

>

> Flo-

>

> It's it lovely to have a crew around Jess who get it?? There are so many

> levels of " getting it " . I'm learning more and more about how much we can't

> even begin to understand since we can't be inside their skin. Don't you

> wish you could change places just for a short time? Just long enough to

> really get it??

>

> Hugs back at'cha!

>

> Michele

>

>

--

Flo (UK)

Mum to - CHARGE - (6) and Elly (4)

[Guest guest]

Michele,

BRAVO!!!

pam

Re: Deaf-Blind Awareness week -- beware... this is long

Powerful and well-stated and very, very, very, VERY true.

>

> I am asking for your review of the following article I've written for a

> Deaf-blind Awareness week publication in IL. It's a bit long so delete and

> move on if you don't have time. I just want to be sure I'm clear and

> accurate. Thanks in advance to any of you who have the energy to review

> this for me!

>

> Michele W

> Aubrie's mom

>

> CHARGE syndrome is becoming one of the leading causes of congenital

> deaf-blindness. Consider this. At its worst, CHARGE strips a child of all

> senses. Vision, hearing, and balance can be absent due to malformations of

> the eye and any or all parts of the inner and middle ear. Taste can be

> eliminated due to prohibition of oral feeding caused by swallowing

> problems,

> severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be

> absent due to problems with the olfactory nerve. Touch can be reduced due

> to severe sensory defensiveness and integration issues.

>

> Obviously, a child with such severe sensory limitations will be a

> challenge

> in the classroom. How do you tap into a child's intellect when all of the

> sensory pathways are impeded? The question boggles my mind. I'm speechless

> at the thought of it. (Those who know me understand that I am not often

> speechless!)

>

> Brown, a California Deaf-Blind Educator and CHARGE Specialist put it

> this way: CHARGE is " medically and developmentally, one of the most

> complex

> conditions that we know. Children with CHARGE are also likely to be

> amongst

> the most truly 'multi sensory impaired' people you will ever meet, having

> difficulties not just with vision and hearing but also with the senses

> that

> perceive balance, touch, temperature, pain, pressure, and smell. The many

> different anomalies associated with CHARGE will each impose different,

> varying, and often, conflicting demands upon the child. "

>

> With the worst-case scenario in mind, my daughter is doing incredibly

> well.

> She can see out of one eye. She can hear with one ear. After using a

> feeding tube in infancy, she can now eat virtually anything. After years

> of

> sensory issues, she is gaining more and more control over her own sensory

> state. Her balance is a bit shaky - but it's there.

>

> To the outsider, to the untrained eye, she functions well. She seems to

> see

> " okay " . She seems to hear " just fine " . She gets around " okay " . Everything

> looks different - but " okay " . What is unseen is the invisible effort it

> takes for her to appear to function so well. It's hard to imagine the

> effort it takes to keep her body straight in the chair, to keep her visual

> and auditory attention focused on the task at hand, to keep her pencil

> steady in her unusually limber and uncoordinated little hand. She is

> getting sensory input from all 5 senses - but all of the information is

> slightly skewed or incomplete. Somehow, she manages to create a fairly

> decent, but unique, view of her world from all of that incomplete and

> slightly inaccurate input.

>

> How do we ensure that the view she is creating and the concepts she is

> developing are correct? How to we ensure that she gets as accurate and

> complete information as possible? How do we adjust her day for the fatigue

> that comes from all the effort it takes to simply " be " ? How do we fit all

> of the necessary therapies (OT, PT, speech, O & M, and more) into her school

> day without losing time for academics? How do we support her social

> development when her experience of the world is so vastly different from

> her

> age-mates?

>

> I can assure you that a typical classroom teacher in a typical school

> district with typically available special education supports cannot answer

> the above questions. Specialists in deaf-blindness with experience and

> understanding of the complexities of the multiple impairments of CHARGE

> are

> absolutely necessary for the success of my daughter and other children

> like

> her. Specialized supports must be available around the country in order

> for

> children with multiple and complex impairments, including deaf-blindness,

> to

> be understood and to be supported to succeed.

>

>

[Guest guest]

Oh, Flo -

Sleep seems such a little thing to ask for. And ends up having such

monumental effects. I hope you figure it all out soon.

Michele W

[Guest guest]

Michele - it's great. Maybe we can get it submitted here in our publication

as well. I'll inquire.

Debbie Mataker

Deaf-Blind Awareness week -- beware... this is long

I am asking for your review of the following article I've written for a

Deaf-blind Awareness week publication in IL. It's a bit long so delete and

move on if you don't have time. I just want to be sure I'm clear and

accurate. Thanks in advance to any of you who have the energy to review

this for me!

Michele W

Aubrie's mom

CHARGE syndrome is becoming one of the leading causes of congenital

deaf-blindness. Consider this. At its worst, CHARGE strips a child of all

senses. Vision, hearing, and balance can be absent due to malformations of

the eye and any or all parts of the inner and middle ear. Taste can be

eliminated due to prohibition of oral feeding caused by swallowing problems,

severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be

absent due to problems with the olfactory nerve. Touch can be reduced due

to severe sensory defensiveness and integration issues.

Obviously, a child with such severe sensory limitations will be a challenge

in the classroom. How do you tap into a child's intellect when all of the

sensory pathways are impeded? The question boggles my mind. I'm speechless

at the thought of it. (Those who know me understand that I am not often

speechless!)

Brown, a California Deaf-Blind Educator and CHARGE Specialist put it

this way: CHARGE is " medically and developmentally, one of the most complex

conditions that we know. Children with CHARGE are also likely to be amongst

the most truly 'multi sensory impaired' people you will ever meet, having

difficulties not just with vision and hearing but also with the senses that

perceive balance, touch, temperature, pain, pressure, and smell. The many

different anomalies associated with CHARGE will each impose different,

varying, and often, conflicting demands upon the child. "

With the worst-case scenario in mind, my daughter is doing incredibly well.

She can see out of one eye. She can hear with one ear. After using a

feeding tube in infancy, she can now eat virtually anything. After years of

sensory issues, she is gaining more and more control over her own sensory

state. Her balance is a bit shaky - but it's there.

To the outsider, to the untrained eye, she functions well. She seems to see

" okay " . She seems to hear " just fine " . She gets around " okay " . Everything

looks different - but " okay " . What is unseen is the invisible effort it

takes for her to appear to function so well. It's hard to imagine the

effort it takes to keep her body straight in the chair, to keep her visual

and auditory attention focused on the task at hand, to keep her pencil

steady in her unusually limber and uncoordinated little hand. She is

getting sensory input from all 5 senses - but all of the information is

slightly skewed or incomplete. Somehow, she manages to create a fairly

decent, but unique, view of her world from all of that incomplete and

slightly inaccurate input.

How do we ensure that the view she is creating and the concepts she is

developing are correct? How to we ensure that she gets as accurate and

complete information as possible? How do we adjust her day for the fatigue

that comes from all the effort it takes to simply " be " ? How do we fit all

of the necessary therapies (OT, PT, speech, O & M, and more) into her school

day without losing time for academics? How do we support her social

development when her experience of the world is so vastly different from her

age-mates?

I can assure you that a typical classroom teacher in a typical school

district with typically available special education supports cannot answer

the above questions. Specialists in deaf-blindness with experience and

understanding of the complexities of the multiple impairments of CHARGE are

absolutely necessary for the success of my daughter and other children like

her. Specialized supports must be available around the country in order for

children with multiple and complex impairments, including deaf-blindness, to

be understood and to be supported to succeed.

[Guest guest]

Michele,

Great!

Points to the core issues, asks the right questions, without being at all

overwhelming.

I'm saving it.

;-)

in Ma.

[Guest guest]

Michele,

All I can say is WOW, OH MY GOD! You nailed it! We have been saying this all

school year long and no one is listening to us. It would be great if the

educational system would READ this.

If it is ok with you I would like to take this and send it to Garland's team,

but change just the part to fit him.

THANK YOU!

, Randy & Garland Goodwin

---- Weir wrote:

=============

Powerful and well-stated and very, very, very, VERY true.

>

> I am asking for your review of the following article I've written for a

> Deaf-blind Awareness week publication in IL. It's a bit long so delete and

> move on if you don't have time. I just want to be sure I'm clear and

> accurate. Thanks in advance to any of you who have the energy to review

> this for me!

>

> Michele W

> Aubrie's mom

>

> CHARGE syndrome is becoming one of the leading causes of congenital

> deaf-blindness. Consider this. At its worst, CHARGE strips a child of all

> senses. Vision, hearing, and balance can be absent due to malformations of

> the eye and any or all parts of the inner and middle ear. Taste can be

> eliminated due to prohibition of oral feeding caused by swallowing

> problems,

> severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be

> absent due to problems with the olfactory nerve. Touch can be reduced due

> to severe sensory defensiveness and integration issues.

>

> Obviously, a child with such severe sensory limitations will be a

> challenge

> in the classroom. How do you tap into a child's intellect when all of the

> sensory pathways are impeded? The question boggles my mind. I'm speechless

> at the thought of it. (Those who know me understand that I am not often

> speechless!)

>

> Brown, a California Deaf-Blind Educator and CHARGE Specialist put it

> this way: CHARGE is " medically and developmentally, one of the most

> complex

> conditions that we know. Children with CHARGE are also likely to be

> amongst

> the most truly 'multi sensory impaired' people you will ever meet, having

> difficulties not just with vision and hearing but also with the senses

> that

> perceive balance, touch, temperature, pain, pressure, and smell. The many

> different anomalies associated with CHARGE will each impose different,

> varying, and often, conflicting demands upon the child. "

>

> With the worst-case scenario in mind, my daughter is doing incredibly

> well.

> She can see out of one eye. She can hear with one ear. After using a

> feeding tube in infancy, she can now eat virtually anything. After years

> of

> sensory issues, she is gaining more and more control over her own sensory

> state. Her balance is a bit shaky - but it's there.

>

> To the outsider, to the untrained eye, she functions well. She seems to

> see

> " okay " . She seems to hear " just fine " . She gets around " okay " . Everything

> looks different - but " okay " . What is unseen is the invisible effort it

> takes for her to appear to function so well. It's hard to imagine the

> effort it takes to keep her body straight in the chair, to keep her visual

> and auditory attention focused on the task at hand, to keep her pencil

> steady in her unusually limber and uncoordinated little hand. She is

> getting sensory input from all 5 senses - but all of the information is

> slightly skewed or incomplete. Somehow, she manages to create a fairly

> decent, but unique, view of her world from all of that incomplete and

> slightly inaccurate input.

>

> How do we ensure that the view she is creating and the concepts she is

> developing are correct? How to we ensure that she gets as accurate and

> complete information as possible? How do we adjust her day for the fatigue

> that comes from all the effort it takes to simply " be " ? How do we fit all

> of the necessary therapies (OT, PT, speech, O & M, and more) into her school

> day without losing time for academics? How do we support her social

> development when her experience of the world is so vastly different from

> her

> age-mates?

>

> I can assure you that a typical classroom teacher in a typical school

> district with typically available special education supports cannot answer

> the above questions. Specialists in deaf-blindness with experience and

> understanding of the complexities of the multiple impairments of CHARGE

> are

> absolutely necessary for the success of my daughter and other children

> like

> her. Specialized supports must be available around the country in order

> for

> children with multiple and complex impairments, including deaf-blindness,

> to

> be understood and to be supported to succeed.

>

>

[Guest guest]

Debbie-

Sure! If it's gets printed elsewhere, just let me know so I can keep

track. Our DB Project has solicited articles from parents around the state

for this special edition of their newsletter. Besides going out to their

regular mailing list, they'll be sending to all the special ed coordinators

in all school districts and things like that.

Michele

[Guest guest]

-

You are welcome to use it as you like.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

& Randy

Sent: Sunday, January 28, 2007 10:23 AM

To: CHARGE

Cc: Weir

Subject: Re: Deaf-Blind Awareness week -- beware... this is long

Michele,

All I can say is WOW, OH MY GOD! You nailed it! We have been saying this all

school year long and no one is listening to us. It would be great if the

educational system would READ this.

If it is ok with you I would like to take this and send it to Garland's

team, but change just the part to fit him.

THANK YOU!

, Randy & Garland Goodwin

[Guest guest]

Wow, Michele, you have such a great gift of writing, it is fantastic

and it actually explains things very well.

Well done...

Sydney Australia

>

> I am asking for your review of the following article I've written

for a

> Deaf-blind Awareness week publication in IL. It's a bit long so

delete and

> move on if you don't have time. I just want to be sure I'm clear

and

> accurate. Thanks in advance to any of you who have the energy to

review

> this for me!

>

>

>

> Michele W

> Aubrie's mom

>

>

>

>

>

> CHARGE syndrome is becoming one of the leading causes of congenital

> deaf-blindness. Consider this. At its worst, CHARGE strips a

child of all

> senses. Vision, hearing, and balance can be absent due to

malformations of

> the eye and any or all parts of the inner and middle ear. Taste

can be

> eliminated due to prohibition of oral feeding caused by swallowing

problems,

> severe gastro-esophageal reflux, and aspiration pneumonias. Smell

can be

> absent due to problems with the olfactory nerve. Touch can be

reduced due

> to severe sensory defensiveness and integration issues.

>

>

>

> Obviously, a child with such severe sensory limitations will be a

challenge

> in the classroom. How do you tap into a child's intellect when all

of the

> sensory pathways are impeded? The question boggles my mind. I'm

speechless

> at the thought of it. (Those who know me understand that I am not

often

> speechless!)

>

>

>

> Brown, a California Deaf-Blind Educator and CHARGE Specialist

put it

> this way: CHARGE is " medically and developmentally, one of the

most complex

> conditions that we know. Children with CHARGE are also likely to

be amongst

> the most truly 'multi sensory impaired' people you will ever meet,

having

> difficulties not just with vision and hearing but also with the

senses that

> perceive balance, touch, temperature, pain, pressure, and smell.

The many

> different anomalies associated with CHARGE will each impose

different,

> varying, and often, conflicting demands upon the child. "

>

>

>

> With the worst-case scenario in mind, my daughter is doing

incredibly well.

> She can see out of one eye. She can hear with one ear. After

using a

> feeding tube in infancy, she can now eat virtually anything. After

years of

> sensory issues, she is gaining more and more control over her own

sensory

> state. Her balance is a bit shaky - but it's there.

>

>

>

> To the outsider, to the untrained eye, she functions well. She

seems to see

> " okay " . She seems to hear " just fine " . She gets around " okay " .

Everything

> looks different - but " okay " . What is unseen is the invisible

effort it

> takes for her to appear to function so well. It's hard to imagine

the

> effort it takes to keep her body straight in the chair, to keep her

visual

> and auditory attention focused on the task at hand, to keep her

pencil

> steady in her unusually limber and uncoordinated little hand. She

is

> getting sensory input from all 5 senses - but all of the

information is

> slightly skewed or incomplete. Somehow, she manages to create a

fairly

> decent, but unique, view of her world from all of that incomplete

and

> slightly inaccurate input.

>

>

>

> How do we ensure that the view she is creating and the concepts she

is

> developing are correct? How to we ensure that she gets as accurate

and

> complete information as possible? How do we adjust her day for the

fatigue

> that comes from all the effort it takes to simply " be " ? How do we

fit all

> of the necessary therapies (OT, PT, speech, O & M, and more) into her

school

> day without losing time for academics? How do we support her social

> development when her experience of the world is so vastly different

from her

> age-mates?

>

>

>

> I can assure you that a typical classroom teacher in a typical

school

> district with typically available special education supports cannot

answer

> the above questions. Specialists in deaf-blindness with experience

and

> understanding of the complexities of the multiple impairments of

CHARGE are

> absolutely necessary for the success of my daughter and other

children like

> her. Specialized supports must be available around the country in

order for

> children with multiple and complex impairments, including deaf-

blindness, to

> be understood and to be supported to succeed.

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

& all --

Thanks! I wasn't really looking for praise (at least, I didn't think so).

I wanted to be sure I didn't have any exaggerations or misinformation. But

- the praise has been nice :-) This writing thing is new to me so the

positive feedback is good for my motivation to continue.

Michele W

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Begas

Sent: Sunday, January 28, 2007 2:56 PM

To: CHARGE

Subject: Re: Deaf-Blind Awareness week -- beware... this is long

Wow, Michele, you have such a great gift of writing, it is fantastic

and it actually explains things very well.

Well done...

Sydney Australia

[Guest guest]

u no soemtiems its good to exaguate in this area then we get MORE lol

>

> & all --

>

> Thanks! I wasn't really looking for praise (at least, I didn't think so).

> I wanted to be sure I didn't have any exaggerations or misinformation. But

> - the praise has been nice :-) This writing thing is new to me so the

> positive feedback is good for my motivation to continue.

>

> Michele W

>

> _____

>

> From: CHARGE <CHARGE%40yahoogroups.com> [mailto:

> CHARGE <CHARGE%40yahoogroups.com>] On Behalf Of

> Begas

> Sent: Sunday, January 28, 2007 2:56 PM

> To: CHARGE <CHARGE%40yahoogroups.com>

> Subject: Re: Deaf-Blind Awareness week -- beware... this is long

>

> Wow, Michele, you have such a great gift of writing, it is fantastic

> and it actually explains things very well.

> Well done...

>

> Sydney Australia

>

>

[Guest guest]

I'm saving this one for the file!!

Deaf-Blind Awareness week -- beware... this is long

I am asking for your review of the following article I've written for a

Deaf-blind Awareness week publication in IL. It's a bit long so delete and

move on if you don't have time. I just want to be sure I'm clear and

accurate. Thanks in advance to any of you who have the energy to review

this for me!

Michele W

Aubrie's mom

CHARGE syndrome is becoming one of the leading causes of congenital

deaf-blindness. Consider this. At its worst, CHARGE strips a child of all

senses. Vision, hearing, and balance can be absent due to malformations of

the eye and any or all parts of the inner and middle ear. Taste can be

eliminated due to prohibition of oral feeding caused by swallowing problems,

severe gastro-esophageal reflux, and aspiration pneumonias. Smell can be

absent due to problems with the olfactory nerve. Touch can be reduced due

to severe sensory defensiveness and integration issues.

Obviously, a child with such severe sensory limitations will be a challenge

in the classroom. How do you tap into a child's intellect when all of the

sensory pathways are impeded? The question boggles my mind. I'm speechless

at the thought of it. (Those who know me understand that I am not often

speechless!)

Brown, a California Deaf-Blind Educator and CHARGE Specialist put it

this way: CHARGE is " medically and developmentally, one of the most complex

conditions that we know. Children with CHARGE are also likely to be amongst

the most truly 'multi sensory impaired' people you will ever meet, having

difficulties not just with vision and hearing but also with the senses that

perceive balance, touch, temperature, pain, pressure, and smell. The many

different anomalies associated with CHARGE will each impose different,

varying, and often, conflicting demands upon the child. "

With the worst-case scenario in mind, my daughter is doing incredibly well.

She can see out of one eye. She can hear with one ear. After using a

feeding tube in infancy, she can now eat virtually anything. After years of

sensory issues, she is gaining more and more control over her own sensory

state. Her balance is a bit shaky - but it's there.

To the outsider, to the untrained eye, she functions well. She seems to see

" okay " . She seems to hear " just fine " . She gets around " okay " . Everything

looks different - but " okay " . What is unseen is the invisible effort it

takes for her to appear to function so well. It's hard to imagine the

effort it takes to keep her body straight in the chair, to keep her visual

and auditory attention focused on the task at hand, to keep her pencil

steady in her unusually limber and uncoordinated little hand. She is

getting sensory input from all 5 senses - but all of the information is

slightly skewed or incomplete. Somehow, she manages to create a fairly

decent, but unique, view of her world from all of that incomplete and

slightly inaccurate input.

How do we ensure that the view she is creating and the concepts she is

developing are correct? How to we ensure that she gets as accurate and

complete information as possible? How do we adjust her day for the fatigue

that comes from all the effort it takes to simply " be " ? How do we fit all

of the necessary therapies (OT, PT, speech, O & M, and more) into her school

day without losing time for academics? How do we support her social

development when her experience of the world is so vastly different from her

age-mates?

I can assure you that a typical classroom teacher in a typical school

district with typically available special education supports cannot answer

the above questions. Specialists in deaf-blindness with experience and

understanding of the complexities of the multiple impairments of CHARGE are

absolutely necessary for the success of my daughter and other children like

her. Specialized supports must be available around the country in order for

children with multiple and complex impairments, including deaf-blindness, to

be understood and to be supported to succeed.