Re: Perkins/Miranda Statement

[Guest guest]

Hi ,

My son who is almost 7 is being evaluate (right now) by a Doctor who

has extensive experience in hearing impaired issues and vision issues. He has

incredible insights to our children...He is soft spoken and very kind...His

evaluation is over the course of 2 days...and has already provided information

that can help my son...His name is Dr. Morse...and we found him at

Dartmouth..he however does not work there anymore but he is providing us with

contact

information...He has been evaluating children with visual impairments and or

hearing impairments since 1961..so he brings a lot to the table...I'll let you

know how to contact if you are interested

Ellen

[Guest guest]

Always interested in hearing about new doctors with great insight. How do

we contact him?

Murray mom to twin Chargers and and wife to Jay

_Jayem14@..._ (mailto:Jayem14@...)

Thank you!

[Guest guest]

Bonnie,

I always read your posts with great interest. I am wondering if Perkins

could help my daughter if they really understand CHARGE so well. But, I am

wondering if my daughter would " qualify " for an evaluation at Perkins as her

vision is really basically ok. She does have glasses, but they are for an

astigmatism and slight nearsightedness. The Dr. said her vision fell within

the spectrum of normal for her age (now 9) and that if no one noticed issues

he would not suggest glasses. He said he would write the prescription and

wearing glasses would not hinder her development. It was my decision

whether or not to get the prescription filled. I did fill it because the

teachers had noticed some things at school and that is what prompted me to

have her vision reevaluated in the first place. And, now she never takes

off her glasses - loves them. She quit having interest in her hearing aid

about 2 years ago. I just don't think she gets that much from it. She

wears it very occasionally. As a newborn her right ear tested profoundly

deaf. The left one tested moderate to severe. Now the left tests in the

severe range. I am wondering if the antibiotics she was on forever those

first few years affected her hearing. (She used to love her hearing aid.)

So...that's it for now. I am just wondering about the criteria for a

Perkins eval. We live in Massachusetts...about an hour or so from Perkins

so logistics are not the issue. My daughter now attends a school for the

deaf which has some experience with CHARGE kids, but I am sure not near the

experience Perkins has.

On another note...we are on the waiting list for a neuropsych evaluation to

be done by a person in Woburn, MA that specializes in deaf kids. From what

I understand she is THE person to see. Currently it looks like that eval

will happen in April. I am really hoping that eval will provide insight

into how she processes information and help us teach her better. I guess

this woman is supposed to be phenomenal. We will see.

Like everyone else on this list I want for my daughter to live up to her

very fullest potential. And, you are so right that NOW, when they are young

children, we MUST do everything we can to maximize learning, etc. It's just

often so difficult to figure out all of the pieces.

Any information you can provide would be appreciated. Thanks!

~

[Guest guest]

-

I wonder if there could be vision issues not related to acuity. I am

learning that there is a lot involved in vision -- much more than seeing

clearly. Aubrie has mild nearsightedness in her good eye, but nystagmus

and monocular vision make it hard for her to see distance, some small

print, etc.

I would be very interested in what you find at your neuropsych eval in

the spring. I wonder if Aubrie will benefit from something like that at

some point. She has weird little quirks that it would be nice to

understand.

Michele W

Aubrie's mom (6 yrs)

[Guest guest]

This is my theory and my theory only, but I believe many of our children

have visual and auditory processing problems, so even though your daughter

has normal acuity, does she have a normal functional vision exam? The

things at school that triggered the eye exam, are they explained in your

mind by astigmatism and near-sightedness? I can't believe how many of the

older CHARGErs talk about how people misunderstood their visual difficulty

for so long, Patty and Chantelle as a start. Kim L

Re: Perkins/Miranda Statement

Bonnie,

I always read your posts with great interest. I am wondering if Perkins

could help my daughter if they really understand CHARGE so well. But, I am

wondering if my daughter would " qualify " for an evaluation at Perkins as her

vision is really basically ok. She does have glasses, but they are for an

astigmatism and slight nearsightedness. The Dr. said her vision fell within

the spectrum of normal for her age (now 9) and that if no one noticed issues

he would not suggest glasses. He said he would write the prescription and

wearing glasses would not hinder her development. It was my decision

whether or not to get the prescription filled. I did fill it because the

teachers had noticed some things at school and that is what prompted me to

have her vision reevaluated in the first place. And, now she never takes

off her glasses - loves them. She quit having interest in her hearing aid

about 2 years ago. I just don't think she gets that much from it. She

wears it very occasionally. As a newborn her right ear tested profoundly

deaf. The left one tested moderate to severe. Now the left tests in the

severe range. I am wondering if the antibiotics she was on forever those

first few years affected her hearing. (She used to love her hearing aid.)

So...that's it for now. I am just wondering about the criteria for a

Perkins eval. We live in Massachusetts...about an hour or so from Perkins

so logistics are not the issue. My daughter now attends a school for the

deaf which has some experience with CHARGE kids, but I am sure not near the

experience Perkins has.

On another note...we are on the waiting list for a neuropsych evaluation to

be done by a person in Woburn, MA that specializes in deaf kids. From what

I understand she is THE person to see. Currently it looks like that eval

will happen in April. I am really hoping that eval will provide insight

into how she processes information and help us teach her better. I guess

this woman is supposed to be phenomenal. We will see.

Like everyone else on this list I want for my daughter to live up to her

very fullest potential. And, you are so right that NOW, when they are young

children, we MUST do everything we can to maximize learning, etc. It's just

often so difficult to figure out all of the pieces.

Any information you can provide would be appreciated. Thanks!

~

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

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Hi ,

I just read your post about the criteria for evaluation at Perkins. While

there are no " Set " criteria, the obvious things would be that the student being

referred have a vision loss. That said, in the Deafblind Program (where I work

and am a member of the evaluation team) this is not a primary criteria. Hearing

loss, however, is a criteria as well as other handicapping conditions which may

interfere with learning and/or having an evaluation by other teams with one

specialty. So... your daughter would qualify in that way for referral to the

team.

The process is as follows: call/write/email to Underwood who is the

Coordinator of the Evaluations; a packet is sent to you; it is returned with the

requisite background materials (medical, ophthalmological, audiological, school,

etc.) and then a " Pre Eval " meeting is scheduled with the team. In that

meeting, the discussion centers on the referral questions and where/what areas

of evaluation are needed. A date is set, the student comes for the evaluation

day, reports (with recommendations) are written, and then sent to the

appropriate people.

If you are interested, Underwood's phone number is and email

is chris.underwood@...., our mailing address is Perkins School for the

Blind, 175 N. Beacon St., Watertown, MA, 02472

And... I want to know who the neuropsych. is that you are talking about!!!

Please share!

If you have any more questions, feel free to contact off list.

Pam

[Guest guest]

Very good point Kim. I do not know about that. We definitely do know that

her wiring is " different. " We are trying to get a handle on that, hence

the neuropsych eval. As, the " wiring " is affecting her learning, it may

very well be affecting visual processing too.

At school they noticed that she was holding papers close to her, like she

was having trouble making them out. This is not what would happen typically

with a nearsighted person. The dr. said that most likely it was the

astigmatism causing her to do this. But, now I am wondering about that....

Thank you.

~

Re: Perkins/Miranda Statement

>

>

> Bonnie,

>

> I always read your posts with great interest. I am wondering if Perkins

> could help my daughter if they really understand CHARGE so well. But, I

am

> wondering if my daughter would " qualify " for an evaluation at Perkins as

her

> vision is really basically ok. She does have glasses, but they are for an

> astigmatism and slight nearsightedness. The Dr. said her vision fell

within

> the spectrum of normal for her age (now 9) and that if no one noticed

issues

> he would not suggest glasses. He said he would write the prescription and

> wearing glasses would not hinder her development. It was my decision

> whether or not to get the prescription filled. I did fill it because the

> teachers had noticed some things at school and that is what prompted me to

> have her vision reevaluated in the first place. And, now she never takes

> off her glasses - loves them. She quit having interest in her hearing aid

> about 2 years ago. I just don't think she gets that much from it. She

> wears it very occasionally. As a newborn her right ear tested profoundly

> deaf. The left one tested moderate to severe. Now the left tests in the

> severe range. I am wondering if the antibiotics she was on forever those

> first few years affected her hearing. (She used to love her hearing aid.)

> So...that's it for now. I am just wondering about the criteria for a

> Perkins eval. We live in Massachusetts...about an hour or so from Perkins

> so logistics are not the issue. My daughter now attends a school for the

> deaf which has some experience with CHARGE kids, but I am sure not near

the

> experience Perkins has.

>

> On another note...we are on the waiting list for a neuropsych evaluation

to

> be done by a person in Woburn, MA that specializes in deaf kids. From

what

> I understand she is THE person to see. Currently it looks like that eval

> will happen in April. I am really hoping that eval will provide insight

> into how she processes information and help us teach her better. I guess

> this woman is supposed to be phenomenal. We will see.

>

> Like everyone else on this list I want for my daughter to live up to her

> very fullest potential. And, you are so right that NOW, when they are

young

> children, we MUST do everything we can to maximize learning, etc. It's

just

> often so difficult to figure out all of the pieces.

>

> Any information you can provide would be appreciated. Thanks!

>

> ~

>

>

>

>

> 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

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Thanks Pam! My daughter currently attends The Learning Center for Deaf

Children in Framingham. It is a total signing environment in which she is

doing well, but I am not satisfied that she is truly anywhere near her full

potential. She is in a special needs class there and gets OT and PT. I

think I will contact and discuss a possible evaluation. She

definitely has other handicapping conditions that interfere with her

learning also.

~

[Guest guest]

Thanks for the info. I am going to investigate this more as one of the

reasons we say the opthamologist was because of holding papers close and

seeming to have trouble seeing far. In fact, when she was 3 the preschool

teacher questioned her vision. She had been examined and we were told it

was fine. We just thought she was overwhelmed with the class and all of the

stimulation in it. She was then put in the smaller special needs class

where she has been ever since.

~

Re: Perkins/Miranda Statement

>

> -

> I wonder if there could be vision issues not related to acuity. I am

> learning that there is a lot involved in vision -- much more than seeing

> clearly. Aubrie has mild nearsightedness in her good eye, but nystagmus

> and monocular vision make it hard for her to see distance, some small

> print, etc.

>

> I would be very interested in what you find at your neuropsych eval in

> the spring. I wonder if Aubrie will benefit from something like that at

> some point. She has weird little quirks that it would be nice to

> understand.

>

> Michele W

> Aubrie's mom (6 yrs)

>

>

>

>

> 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

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Ellen,

I would love the information. Thank you!

~

Re: Perkins/Miranda Statement

> Hi ,

> My son who is almost 7 is being evaluate (right now) by a Doctor who

> has extensive experience in hearing impaired issues and vision issues. He

has

> incredible insights to our children...He is soft spoken and very

kind...His

> evaluation is over the course of 2 days...and has already provided

information

> that can help my son...His name is Dr. Morse...and we found him at

> Dartmouth..he however does not work there anymore but he is providing us

with contact

> information...He has been evaluating children with visual impairments and

or

> hearing impairments since 1961..so he brings a lot to the table...I'll let

you

> know how to contact if you are interested

>

> Ellen

>

>

>

[Guest guest]

Well, glad I could help. Let me know if you need me for any facilitation...

pam

> ----------

> From: Parham

> Reply To: CHARGE

> Sent: Thursday, September 16, 2004 11:40 AM

> To: CHARGE

> Subject: Re: Perkins/Miranda Statement

>

> Thanks Pam! My daughter currently attends The Learning Center for Deaf

> Children in Framingham. It is a total signing environment in which she is

> doing well, but I am not satisfied that she is truly anywhere near her full

> potential. She is in a special needs class there and gets OT and PT. I

> think I will contact and discuss a possible evaluation. She

> definitely has other handicapping conditions that interfere with her

> learning also.

>

> ~

>

>

>

>

> 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

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

>

>

>

[Guest guest]

-

Aubrie will sometimes hold things very close to see. But then there are

times when she can pick out the tiniest detail. So there is definitely

more than simple acuity. It's contrast, the lighting, etc. More

variables than we can always control, I think. But it's important to

know about the issues so that we can respond appropriately and provide

the right accomodations.

Speaking of that -- Aubrie's fine motor is so weak that her pencil marks

are light as a feather. We're looking for an idea of the right dark

writing utensil that is erasable. Right now, we're trying a black

colored pencil, but I haven't heard how successful it's been. A black

marker isn't erasable (critical in 1st grade) and is too slippery and

fast moving. She needs a lead with grit -- like a charcoal pencil,

maybe. If anyone's had experience with writing instruments, let me know.

Michele W

Aubrie's mom 6 yrs

[Guest guest]

-

Aubrie can see the chalkboard but it takes her much more time than it

should to focus, copy on her paper, refocus, copy again, etc. Now the

aid is going to write all boardwork on a dry erase board at Aubrie's

desk. The teacher also does things where the kids have to count the

number of fingers she is holding up. Aubrie is only accurate if the

teacher is within 3-4 ft. So the teacher now is aware that she must

bring all visual materials close enough -- or provide an alternate at

her desk. I see evidence of her distance problems at the eye dr because

she can't see the test screen at a distance.

The trick with Aubrie is that she isn't aware enough to tell us when she

can't see well or can't hear well. So we have to figure it out by her

behaviors. She'll just make do if we don't catch it.

Michele W

[Guest guest]

hi Michele

why is it critical for it to be erasable esp in first grade?

Jo

----- Original Message -----

Right now, we're trying a black

> colored pencil, but I haven't heard how successful it's been. A black

> marker isn't erasable (critical in 1st grade) and is too slippery and

> fast moving. She needs a lead with grit -- like a charcoal pencil,

> maybe. If anyone's had experience with writing instruments, let me know.

[Guest guest]

Michele,

Just a thought. Would erasable pen be to slippery? Ask your art teacher?

I have seen kids in art using big gum erasers on some kind of pencil.

Lynn

Re: Perkins/Miranda Statement

-

Aubrie will sometimes hold things very close to see. But then there are

times when she can pick out the tiniest detail. So there is definitely

more than simple acuity. It's contrast, the lighting, etc. More

variables than we can always control, I think. But it's important to

know about the issues so that we can respond appropriately and provide

the right accomodations.

Speaking of that -- Aubrie's fine motor is so weak that her pencil marks

are light as a feather. We're looking for an idea of the right dark

writing utensil that is erasable. Right now, we're trying a black

colored pencil, but I haven't heard how successful it's been. A black

marker isn't erasable (critical in 1st grade) and is too slippery and

fast moving. She needs a lead with grit -- like a charcoal pencil,

maybe. If anyone's had experience with writing instruments, let me know.

Michele W

Aubrie's mom 6 yrs

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

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Lynn-

I think erasable pen isn't dark enough but I did plan on going to both

an office supply and art store to see what I could come up with. Thanks

for coming up with suggestions for us.

Sorry to hear your year is still so stressful. I just met with a friend

who is teaching 1st grade for the first year. Haven't seen her since

school started and she's having an awful time. I feel so bad for her.

She's only stressing cuz she's such a good, caring teacher. She was in

BD for years and is now doing regular classroom. She's got 2 kids who

have actually threatened to bring a gun to school, burn it down, etc and

she's not being to teach the others cuz of the time those 2 take. Argh.

Michele W

[Guest guest]

She sounds a lot like me. I have 3 students out of 14 in one class that take up

all my time. I feel so bad for the good kids that are trying to learn. My

principal is doing his best too. I am not trained to work/deal with emotionally

disturbed studenta but our school is cross catagorical (sp?)and we have no

SBH/ED units so as sp. ed. I get them. The kids are mixed in the full

population.

I pray every morning for strenght and guidance. The stress is affecting my

dieabetes so I have to fine a way to cope very soon.

I mall walk every night after school.That helps some.

Lynn

Re: Perkins/Miranda Statement

Lynn-

I think erasable pen isn't dark enough but I did plan on going to both

an office supply and art store to see what I could come up with. Thanks

for coming up with suggestions for us.

Sorry to hear your year is still so stressful. I just met with a friend

who is teaching 1st grade for the first year. Haven't seen her since

school started and she's having an awful time. I feel so bad for her.

She's only stressing cuz she's such a good, caring teacher. She was in

BD for years and is now doing regular classroom. She's got 2 kids who

have actually threatened to bring a gun to school, burn it down, etc and

she's not being to teach the others cuz of the time those 2 take. Argh.

Michele W

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

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

What about a dry/erase board?

They make special sheets that go on them for many different skills, such as

writing paper or math sheets etc if she needs more guidance than just the

blank slate.

Kim

Re: Perkins/Miranda Statement

Joanne -

Well, maybe it's not " critical " , but there is a lot of erasing to be

done when you are just learning to write and spell.

Michele

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

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Kim-

Tell me more about doing work sheets and writing paper tasks on dry erase.

Michele

[Guest guest]

Do a search under magic slates, I think that is the name of the company - it

has been a long time since we dealt with that company - if it doesn't work I

will ask my boss the name.

At my work we have teachers use the slates for everyone, because it keeps

the class more engaged in group activities.

You can make your own slate by putting an overhead sheet on a clipboard, a

black dry erase market and a sock for erasing and there you go.

If she needs the lines on her overhead sheet then I would do the search

above.

Kim

Re: Perkins/Miranda Statement

Kim-

Tell me more about doing work sheets and writing paper tasks on dry erase.

Michele

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

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Kim-

Well, how easy is that?! If I would have just given it a bit of

thought, I might have come up with that. A transparency over the page

is a great idea to be able to use a black marker and still erase. Thanks!

Michele W