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Lori-

You might want to look at some of the materials on autisim. There are

many sources that have plans for teaching social interaction. I have

some info at school on one such program. I will look it up and give you

the information.

Laurie

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Lori-

You might want to look at some of the materials on autisim. There are

many sources that have plans for teaching social interaction. I have

some info at school on one such program. I will look it up and give you

the information.

Laurie

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Hi Laurie,

I have been wondering if perhaps Alycia might have some mild PDD. I have been

reluctant to admit it but

it seems like there are some signs of it showing up. I keep waiting for her to

outgrow her difficulties

interaction with peers so I haven't been quite ready to think in terms of autism

or PDD but....I think I

need to start thinking about this. I would appreciate any information you can

send my way.

Thankyou,

Lori

Laurie wrote:

>

>

> Lori-

>

> You might want to look at some of the materials on autisim. There are

> many sources that have plans for teaching social interaction. I have

> some info at school on one such program. I will look it up and give you

> the information.

>

> Laurie

>

> ------------------------------------------------------------------------

> We have a new web site! http://www.onelist.com

> ------------------------------------------------------------------------

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

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Hi Laurie,

I have been wondering if perhaps Alycia might have some mild PDD. I have been

reluctant to admit it but

it seems like there are some signs of it showing up. I keep waiting for her to

outgrow her difficulties

interaction with peers so I haven't been quite ready to think in terms of autism

or PDD but....I think I

need to start thinking about this. I would appreciate any information you can

send my way.

Thankyou,

Lori

Laurie wrote:

>

>

> Lori-

>

> You might want to look at some of the materials on autisim. There are

> many sources that have plans for teaching social interaction. I have

> some info at school on one such program. I will look it up and give you

> the information.

>

> Laurie

>

> ------------------------------------------------------------------------

> We have a new web site! http://www.onelist.com

> ------------------------------------------------------------------------

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

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Laurie, I wonder if that would help Tylynn as he too is too friendly and

other kids don't take kindly to it. He finally stopped impulsively hugging

the other kids but in 2nd grade many of the boys shyed away from him for

this. I saw the funny looks they gave him. It's like he was a 3 or 4 yr old

with the social behavior and I wonder if it has to do with the CAPD or

what?? This sort of not knowing how to interact with the others is why the

kids get labeled as nerds and become outcasts and yes, Lori like you said it

hurts. I never fit in either. The adults see the tender lovingness of these

sorts of kids but the other kids can't deal with it. S.

Re: Aggression

>

>

>Lori-

>

>You might want to look at some of the materials on autisim. There are

>many sources that have plans for teaching social interaction. I have

>some info at school on one such program. I will look it up and give you

>the information.

>

>Laurie

>

>

>------------------------------------------------------------------------

>We have a new web site! http://www.onelist.com

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

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Laurie, I wonder if that would help Tylynn as he too is too friendly and

other kids don't take kindly to it. He finally stopped impulsively hugging

the other kids but in 2nd grade many of the boys shyed away from him for

this. I saw the funny looks they gave him. It's like he was a 3 or 4 yr old

with the social behavior and I wonder if it has to do with the CAPD or

what?? This sort of not knowing how to interact with the others is why the

kids get labeled as nerds and become outcasts and yes, Lori like you said it

hurts. I never fit in either. The adults see the tender lovingness of these

sorts of kids but the other kids can't deal with it. S.

Re: Aggression

>

>

>Lori-

>

>You might want to look at some of the materials on autisim. There are

>many sources that have plans for teaching social interaction. I have

>some info at school on one such program. I will look it up and give you

>the information.

>

>Laurie

>

>

>------------------------------------------------------------------------

>We have a new web site! http://www.onelist.com

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

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wrote:

> <snip>impulsively hugging

> the other kids<snip>This sort of not knowing how to interact with the others

is why the

> kids get labeled as nerds and become outcasts <snip>

Hi,

This is exactly my fear for Alycia. Does anyone have any suggestions as to how

to teach a child how to

iniate interaction with other children in an appropriate manner?

Lori

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wrote:

> <snip>impulsively hugging

> the other kids<snip>This sort of not knowing how to interact with the others

is why the

> kids get labeled as nerds and become outcasts <snip>

Hi,

This is exactly my fear for Alycia. Does anyone have any suggestions as to how

to teach a child how to

iniate interaction with other children in an appropriate manner?

Lori

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Lori-

There does seem to be a higher incidence of autism or PDD in mito folks.

I asked Dr. Shoffner about it and he said that it is hard to know if all

autism is caused by mito or not, since those with autism don't routinely

have fresh muscle biopsies.

Your best bet would be to find a doctor who specializes in autism and

make an appointment. If it is not, then you will at least have peace of

mind. These docs are usually found in the developmental disabilities

departement of pediatric psychiatric departments of large medical

centers. There are also some good psychologists that work exclusively

with autism that can make the diagnosis. Ask around in your area. I know

it will probably be hard to ask the parent of a child you know with

autism, but they can be a great deal of help in finding the right person

to take her to.

You could also persue the Central Auditory Processing Disorder too. Some

kids with CAPD look quite autistic in a group. They are usually much

better one on one.

I have to tell everyone about a 9 year old that I am working with. She

is repeating second grade. She was born without a thyroid gland and has

been slow developing. I started working with her last April. She just

blossomed during the one on one sessions. She gained confidence, her

articulation problems became corrected and she showed more academic

skills than her testing indicated. Two weeks ago she got an Easy

Listener to try for the remainder of the year. It is an individual FM

transmitting device. The teacher wears a mike and transmitter and the

student wears a receiver and ear phones. This little girl who was very

shy and quiet and never participated in class and sat looking around

when she was suppose to be doing an assignment, is now asking questions,

answering questions, talking with peers more and has the same light in

her eyes that she had one on one. She was diagnosed through a hearing

center by an audiologist with CAPD. We are now talking about trying to

pay for total room amplification for next year. It is great to see.

Laurie

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-

Yes, it helps the student to know what is important and what to ignore. If the

teacher uses it correctly

and turns off her unit when talking to other kids, then it helps the student to

listen and take notice

when he/she hears the sound in the earphones.

Laurie

> Laurie, how does her hearing the teacher with earphones help the CAPD-does

> it cancel the competing distracting noises? S.

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> Lori-

Good luck with your search.

Laurie

> At this point, we are not ruling out anything as to the cause of Alycia's

learning and social

> difficulties. We are considering the effects of Hearing loss, diminished

vision, possible CAPD and

> possible Autism/PDD symptoms. It seems like it will be nearly impossible to

pinpoint the cause but

> hopefully the cause isn't really important as long as we can find methods for

remediating the problem

> irrespective of the cause.

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Laurie, how does her hearing the teacher with earphones help the CAPD-does

it cancel the competing distracting noises? S.

Re: Aggression

>

>

>Lori-

>

>There does seem to be a higher incidence of autism or PDD in mito folks.

>I asked Dr. Shoffner about it and he said that it is hard to know if all

>autism is caused by mito or not, since those with autism don't routinely

>have fresh muscle biopsies.

>

>Your best bet would be to find a doctor who specializes in autism and

>make an appointment. If it is not, then you will at least have peace of

>mind. These docs are usually found in the developmental disabilities

>departement of pediatric psychiatric departments of large medical

>centers. There are also some good psychologists that work exclusively

>with autism that can make the diagnosis. Ask around in your area. I know

>it will probably be hard to ask the parent of a child you know with

>autism, but they can be a great deal of help in finding the right person

>to take her to.

>

>You could also persue the Central Auditory Processing Disorder too. Some

>kids with CAPD look quite autistic in a group. They are usually much

>better one on one.

>

>I have to tell everyone about a 9 year old that I am working with. She

>is repeating second grade. She was born without a thyroid gland and has

>been slow developing. I started working with her last April. She just

>blossomed during the one on one sessions. She gained confidence, her

>articulation problems became corrected and she showed more academic

>skills than her testing indicated. Two weeks ago she got an Easy

>Listener to try for the remainder of the year. It is an individual FM

>transmitting device. The teacher wears a mike and transmitter and the

>student wears a receiver and ear phones. This little girl who was very

>shy and quiet and never participated in class and sat looking around

>when she was suppose to be doing an assignment, is now asking questions,

>answering questions, talking with peers more and has the same light in

>her eyes that she had one on one. She was diagnosed through a hearing

>center by an audiologist with CAPD. We are now talking about trying to

>pay for total room amplification for next year. It is great to see.

>

>Laurie

>

>

>------------------------------------------------------------------------

>

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Hi Laurie,

That story about the little girl you are working with was very encouraging to

hear. Good for you for

bringing the best out of that little girl and knowing how to reach her.

Unfortunately, we can't pursue a CAPD diagnosis for two reasons....Alycia is

under 7 so Boston Children's

won't test her and because she has a hearing loss they said there is on way to

tell whether her

difficulties are due to her hearing loss or CAPD.

At this point, we are not ruling out anything as to the cause of Alycia's

learning and social

difficulties. We are considering the effects of Hearing loss, diminished

vision, possible CAPD and

possible Autism/PDD symptoms. It seems like it will be nearly impossible to

pinpoint the cause but

hopefully the cause isn't really important as long as we can find methods for

remediating the problem

irrespective of the cause.

I have no problem contacting some parents of Autistic children in search of a

good doctor or good

information. In fact, I have a number for a Local Autism Support network that I

got through the local

Association for Retarted Citizens.

Lori

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I also was told they couldn't test Kody for CAPD until he is 8 or 9, they

prefer 12. But the audiologist is sending me information of testing for

phonetics that the school may purchase or they can do the testing there and

there is a learning program that goes with it. As with the CAPD tests this

is the place that developed and distributes the test. He can't seem to learn

or remember the sounds of the letters or letter blends. He also now informs

me he would have an easier time writing in cursive and I agree with his

small motor coordination.

The teacher at school is rewarding him extra computer time for catching the

bus in the mornings. He made it this morning and guess what? He felt so good

about his accomplishment he has tried to be extra good about everything this

evening (he even made his bed this morning and did a homework page!)

S.

Re: Aggression

>

>

>Hi Laurie,

>

>That story about the little girl you are working with was very encouraging

to hear. Good for you for

>bringing the best out of that little girl and knowing how to reach her.

>

>Unfortunately, we can't pursue a CAPD diagnosis for two reasons....Alycia

is under 7 so Boston Children's

>won't test her and because she has a hearing loss they said there is on way

to tell whether her

>difficulties are due to her hearing loss or CAPD.

>

>At this point, we are not ruling out anything as to the cause of Alycia's

learning and social

>difficulties. We are considering the effects of Hearing loss, diminished

vision, possible CAPD and

>possible Autism/PDD symptoms. It seems like it will be nearly impossible

to pinpoint the cause but

>hopefully the cause isn't really important as long as we can find methods

for remediating the problem

>irrespective of the cause.

>

>I have no problem contacting some parents of Autistic children in search of

a good doctor or good

>information. In fact, I have a number for a Local Autism Support network

that I got through the local

>Association for Retarted Citizens.

>

>Lori

>

>

>

>

>------------------------------------------------------------------------

>Check out our new web site! http://www.onelist.com

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

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Share on other sites

I also was told they couldn't test Kody for CAPD until he is 8 or 9, they

prefer 12. But the audiologist is sending me information of testing for

phonetics that the school may purchase or they can do the testing there and

there is a learning program that goes with it. As with the CAPD tests this

is the place that developed and distributes the test. He can't seem to learn

or remember the sounds of the letters or letter blends. He also now informs

me he would have an easier time writing in cursive and I agree with his

small motor coordination.

The teacher at school is rewarding him extra computer time for catching the

bus in the mornings. He made it this morning and guess what? He felt so good

about his accomplishment he has tried to be extra good about everything this

evening (he even made his bed this morning and did a homework page!)

S.

Re: Aggression

>

>

>Hi Laurie,

>

>That story about the little girl you are working with was very encouraging

to hear. Good for you for

>bringing the best out of that little girl and knowing how to reach her.

>

>Unfortunately, we can't pursue a CAPD diagnosis for two reasons....Alycia

is under 7 so Boston Children's

>won't test her and because she has a hearing loss they said there is on way

to tell whether her

>difficulties are due to her hearing loss or CAPD.

>

>At this point, we are not ruling out anything as to the cause of Alycia's

learning and social

>difficulties. We are considering the effects of Hearing loss, diminished

vision, possible CAPD and

>possible Autism/PDD symptoms. It seems like it will be nearly impossible

to pinpoint the cause but

>hopefully the cause isn't really important as long as we can find methods

for remediating the problem

>irrespective of the cause.

>

>I have no problem contacting some parents of Autistic children in search of

a good doctor or good

>information. In fact, I have a number for a Local Autism Support network

that I got through the local

>Association for Retarted Citizens.

>

>Lori

>

>

>

>

>------------------------------------------------------------------------

>Check out our new web site! http://www.onelist.com

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

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Laurie, this would be great for Tylynn but I know he wouldn't use them.

Thanks for the explanation. S.

Re: Aggression

>

>

>-

>

>Yes, it helps the student to know what is important and what to ignore. If

the teacher uses it correctly

>and turns off her unit when talking to other kids, then it helps the

student to listen and take notice

>when he/she hears the sound in the earphones.

>

>Laurie

>

>

>> Laurie, how does her hearing the teacher with earphones help the

CAPD-does

>> it cancel the competing distracting noises? S.

>

>

>

>

>------------------------------------------------------------------------

>If you like the colors orange and blue, you will like our new web site!

>http://www.onelist.com

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

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Laurie, I am so grateful you mentioned this. When I told Tylynn's teacher

about it I said but I know he won't wear the earphones as he won't use his

colored lenses sheets either even tho he was amazed how he could see the

print with them and she said she had some for the whole room! I said oh, you

had mentioned those. She said she will get them out and use them to see if

they help Tylynn. Isn't this the best school-what a neat teacher. S.

(And she is the substitute while his teacher is out with her new baby)

Re: Aggression

>

>

>-

>

>Yes, it helps the student to know what is important and what to ignore. If

the teacher uses it correctly

>and turns off her unit when talking to other kids, then it helps the

student to listen and take notice

>when he/she hears the sound in the earphones.

>

>Laurie

>

>

>> Laurie, how does her hearing the teacher with earphones help the

CAPD-does

>> it cancel the competing distracting noises? S.

>

>

>

>

>------------------------------------------------------------------------

>If you like the colors orange and blue, you will like our new web site!

>http://www.onelist.com

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

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Share on other sites

Laurie, I am so grateful you mentioned this. When I told Tylynn's teacher

about it I said but I know he won't wear the earphones as he won't use his

colored lenses sheets either even tho he was amazed how he could see the

print with them and she said she had some for the whole room! I said oh, you

had mentioned those. She said she will get them out and use them to see if

they help Tylynn. Isn't this the best school-what a neat teacher. S.

(And she is the substitute while his teacher is out with her new baby)

Re: Aggression

>

>

>-

>

>Yes, it helps the student to know what is important and what to ignore. If

the teacher uses it correctly

>and turns off her unit when talking to other kids, then it helps the

student to listen and take notice

>when he/she hears the sound in the earphones.

>

>Laurie

>

>

>> Laurie, how does her hearing the teacher with earphones help the

CAPD-does

>> it cancel the competing distracting noises? S.

>

>

>

>

>------------------------------------------------------------------------

>If you like the colors orange and blue, you will like our new web site!

>http://www.onelist.com

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

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Share on other sites

Two weeks ago she got an Easy

> Listener to try for the remainder of the year. It is an individual FM

> transmitting device.

Thanks for this story Laurie. This was recommended for Zachary when the

audiologist diagnosed him last year with CAPD. We have not needed to do it

yet as he is in kindergarten and compensates pretty well but the

audiologist feels we will need it in a year or two. We have what is called

an " open " school where there are partitions between classrooms but not

walls and doors. It was a popular thing in the seventies I guess. The

school is excellent. We were allowed to choose where Zach would go last

year as our district is very accommodating of parent's desires but this is

our home school and we wanted to give it a try for social reasons. It is

very encouraging to me to hear how well your student is doing with this.

Thanks !

Anne - mom to 4

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Anne-

Just so you know, they can make ear molds to connect to the " easy listener "

instead of the ear phones.

Some of the older students prefer this, since they aren't as noticeable. They do

have their downside,

which my student figured out on her own. They are harder to take on and off. She

doesn't wear the unit to

gym, recess and lunch.

Laurie

>

>

> Thanks for this story Laurie. This was recommended for Zachary when the

> audiologist diagnosed him last year with CAPD. We have not needed to do it

> yet as he is in kindergarten and compensates pretty well but the

> audiologist feels we will need it in a year or two. We have what is called

> an " open " school where there are partitions between classrooms but not

> walls and doors. It was a popular thing in the seventies I guess. The

> school is excellent. We were allowed to choose where Zach would go last

> year as our district is very accommodating of parent's desires but this is

> our home school and we wanted to give it a try for social reasons. It is

> very encouraging to me to hear how well your student is doing with this.

> Thanks !

> Anne - mom to 4

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-

The thinking is that the two can't go together. The reason being is that a

hearing loss will make it hard

for someone to separate out the important sounds from the unimportant, just like

in CAPD. There are other

aspects to CAPD, but a hearing loss can also produce similar problems. A person

with a hearing loss can

have processing difficulties. They can repeat the sentence that has been said

(those hearing it), but be

unable to figure out what it means. Poor auditory memory is also a component of

CAPD and this can go

along with a hearing loss. I think it is a problem of trying to keep definitions

as pure as possible.

Where I work, the audiologist doesn't even consider a CAPD evaluation for those

with a hearing loss,

because they already qualify for FM amplification. He starts all kids out with

individual FM

amplification at school and aides at home. This way the child is not having to

filter out competeing

sounds. I hope this helps.

Laurie

> I believe it was Lori who mentioned that Alycia had hearing problems and

> maybe CAPD. (Sorry, Lori, if I'm mixed up on this). I have a 6.5 year old

> daughter who has (unofficially) been diagnosed with CAPD, as well as, a

> Language Processing Disorder (officially). Phoenix Children's Hospital will

> not test a child until 7 years of age, although they agreed to test

> Mackenzie at 6.5 yrs old. Additionally, I was told that a child with CAPD

> does not have a hearing loss/problem. Mackenzie's hearing is great, and

> this, according to the hearing specialtist at Phx. Children's, helped

> support the theory that she has CAPD. Could this person be wrong about how

> a child couldn't have a hearing loss and CAPD?

>

> Thanks!

>

> Lipps

> Savannah (almost 3 yrs old!)

> And anxiously waiting for biopsy results from Shoffner!

>

> ------------------------------------------------------------------------

> If you like orange and blue, then you will love our new web site!

> http://www.onelist.com

> Onelist: ing connections and information exchange

> ------------------------------------------------------------------------

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

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Hi Anne-

What is CAPD?

Re: Aggression

>

>

> Two weeks ago she got an Easy

>> Listener to try for the remainder of the year. It is an individual FM

>> transmitting device.

>

>Thanks for this story Laurie. This was recommended for Zachary when the

>audiologist diagnosed him last year with CAPD. We have not needed to do it

>yet as he is in kindergarten and compensates pretty well but the

>audiologist feels we will need it in a year or two. We have what is called

>an " open " school where there are partitions between classrooms but not

>walls and doors. It was a popular thing in the seventies I guess. The

>school is excellent. We were allowed to choose where Zach would go last

>year as our district is very accommodating of parent's desires but this is

>our home school and we wanted to give it a try for social reasons. It is

>very encouraging to me to hear how well your student is doing with this.

>Thanks !

>Anne - mom to 4

>

>------------------------------------------------------------------------

>We are proud as punch of our new web site!

>http://www.onelist.com

>Onelist: The leading provider of free email community services

>------------------------------------------------------------------------

>Brought to you by www.imdn.org - an on-line support group for those

affected by mitochondrial disease.

>

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Central auditory processing disorder. His hearing per se is fine but he

when tested as to how he processes it once in the brain he was more than 2

standard deviations from the normal and diagnosed with a severe disorder.

However, at the moment e have found all sorts of things to do - mainly with

visuals , slowing down our speech and re wording things in a simpler, less

wordy way so that he is compensating beautifully in school. he has more

trouble at home as it is not as structured and quiet here . We were told

this was due to cerebral involvement from the Mito disease.

Anne

----------

>

>

> Hi Anne-

>

> What is CAPD?

>

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>From: " Anne and Lou Juhlmann " >

>Central auditory processing disorder. His hearing per se is fine but he

>when tested as to how he processes it once in the brain he was more than 2

>standard deviations from the normal and diagnosed with a severe disorder.

I started to post yesterday concerning this topic, but my computer decided

to gobble up my saved e-mail messages and I lost the original post! (Thanks

Jim for trying to help - still no luck!)

I believe it was Lori who mentioned that Alycia had hearing problems and

maybe CAPD. (Sorry, Lori, if I'm mixed up on this). I have a 6.5 year old

daughter who has (unofficially) been diagnosed with CAPD, as well as, a

Language Processing Disorder (officially). Phoenix Children's Hospital will

not test a child until 7 years of age, although they agreed to test

Mackenzie at 6.5 yrs old. Additionally, I was told that a child with CAPD

does not have a hearing loss/problem. Mackenzie's hearing is great, and

this, according to the hearing specialtist at Phx. Children's, helped

support the theory that she has CAPD. Could this person be wrong about how

a child couldn't have a hearing loss and CAPD?

Thanks!

Lipps

Savannah (almost 3 yrs old!)

And anxiously waiting for biopsy results from Shoffner!

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-

The kind of system used by our countywide district is the " Easy Listener " by

Phonic Ear. It cost about

$1,600. We are going to room amplification in this area. The room is analyzed

and good stereo speakers

are placed around the room, off the floor. Some rooms require some sound

absorbsion things be put in

place like carpeting. The teacher then wears the same kind of mike and

transmitter. This way more than

one child benefits from the device. This kind of system runs between $800 and

$1,100 dollars per room.

If your child is diagnosed with CAPD, then I would request that they certify her

as Learning Disabled.

This way you can not only get the amplification that she needs, but small group

and one on one support if

needed.

Laurie

> The FM amplification was recommended for Mackenzie, but the school didn't

> feel it was appropriate at this time, that the teacher could implement other

> techniques to help her. Because I was in a battle with the school to get

> services for Mack, I let go of the issue of the FM device. We finally got

> her help through a 504 Plan instead of an ISP. She is still struggling, but

> slowly improving. I decided to wait on the FM amplification until she has

> the CAPD testing done. I think the school will have a harder time denying

> it if she is definitely diagnosed with CAPD and it is recommended again.

>

> Thank you Laurie for replying to my post. Would you (or anyone else) have

> any suggestions on how to deal with the school on this issue. If after the

> testing, she is diagnose with CAPD and a FM amplification is recommended,

> are there different kinds (some better than others) that we can suggest to

> the school?

>

> Thanks for reading,

> Lipps

> Savannah (almost 3 yrs old!)

> And anxiously waiting for biopsy results from Shoffner!

>

> ------------------------------------------------------------------------

> We have a new web site!

> http://www.onelist.com

> Onelist: The leading provider of free email community services

> ------------------------------------------------------------------------

> Brought to you by www.imdn.org - an on-line support group for those affected

by mitochondrial disease.

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