Re: Speech Therapy and CI candidacy & some other questions

[Guest guest]

Speech Therapy and CI candidacy & some other questions

Sara said " So...anyways...what do you all know about CI

candidacy? We have submitted her records to s Hopkins to see what they

say. "

I know that I have heard that each implant center does set some of the

candidacy guidelines themselves. In my personal opinion, I would not give up.

I would keep trying to find a center where they would take her as a candidate.

I say this because my daughter was bilaterally implanted a little over 3 months

ago. Now she was profound in both ears and was getting no information in her

left ear with the hearing aids. But in her right ear she was getting more

information out of her hearing aids than anyone ever thought possible. But

because of two factors, we choose the bilateral. One she was losing her hearing

as time went along(because of ossification) and they wanted to implant her now

before they would be able to. And yet when they did the evaluation of her she

scored higher than most of the kids that are implanted. When they tested her

right ear with the aid on she was hearing down to 35-40 dbcls. But since we had

tried aids for over 1 1/2 years and she was struggling with oral communication

obviously what she was hearing was not giving her enough information. From what

I understood, at least at my implant center, they do look at each ear

individually. If she is profound in the one ear and cannot use hearing aids in

that ear then she should be a candidate for CI in that ear. She could always

use the hearing aid in the other ear. But sometimes they want the kids to be

aided for a year vs just a few months.

Now what you are being told about speech therapy, in my opinion, is a bunch of

hogwash. Annika has received speech therapy ever since she has been a year old.

I fought for these services for the simple reason that it would give her another

session each week where she would be working on listening and working on her

oral skills. Though I find it very ironic. I asked for speech and kind of

pushed for it and Annika did receive it. Another family in my special ed coop

has asked for speech therapy for her son and was told that he did not need it

yet. He is now 19 months old. But because we have been working together and I

have been making sure that we are at each other meetings she is now getting

speech for her son starting this summer. Basically you can't tell one family

that your child qualifies and then tell another family that they don't. When I

asked for the speech therapy Annika's hearing loss was pretty close to where the

other child's hearing is right now. They were giving that family two hours a

month of services whereas Annika was receiving 3 hours of services a week. The

difference between the two. I knew to ask for more. The other family asked and

they just kind of didn't respond so she thought maybe I am getting enough. I

didn't really take no for an answer. If I didn't think that they were

adequately providing for her, I would either keep pushing or go to the medical

community and receive it. Once I went to the outside, then they figured that

they should maybe provide it and the next thing I knew it was happening. I

think sometimes you just have to let them know that you are not going to take no

for an answer.

Annika actually has the opposite, she has hypertonic(high tone) muscles. This

is because of the bacterial meningitis that she had. But the sensory issues in

some ways would come with hearing impaired kids. Annika always has to touch and

feel everything. Even to the point that she would put many things in her

mouth(even when she was beyond the age appropriate level). This is because

since she wasn't hearing well she had to discover things in different manners or

nontypical manners. It has gotten better ever since she has been implanted but

she is hearing much more now. I would think that it would be typical for a

child who is struggling to hear to use her other senses to explore

Mom of 4

Marcus 13

12

Jon 10

Annika 2

bilaterally implanted 3/1/04

hookup 3/25/04

To visit your group on the web, go to:

http://groups.yahoo.com/group/Listen-Up/

a..

[Guest guest]

Speech Therapy and CI candidacy & some other questions

Sara said " So...anyways...what do you all know about CI

candidacy? We have submitted her records to s Hopkins to see what they

say. "

I know that I have heard that each implant center does set some of the

candidacy guidelines themselves. In my personal opinion, I would not give up.

I would keep trying to find a center where they would take her as a candidate.

I say this because my daughter was bilaterally implanted a little over 3 months

ago. Now she was profound in both ears and was getting no information in her

left ear with the hearing aids. But in her right ear she was getting more

information out of her hearing aids than anyone ever thought possible. But

because of two factors, we choose the bilateral. One she was losing her hearing

as time went along(because of ossification) and they wanted to implant her now

before they would be able to. And yet when they did the evaluation of her she

scored higher than most of the kids that are implanted. When they tested her

right ear with the aid on she was hearing down to 35-40 dbcls. But since we had

tried aids for over 1 1/2 years and she was struggling with oral communication

obviously what she was hearing was not giving her enough information. From what

I understood, at least at my implant center, they do look at each ear

individually. If she is profound in the one ear and cannot use hearing aids in

that ear then she should be a candidate for CI in that ear. She could always

use the hearing aid in the other ear. But sometimes they want the kids to be

aided for a year vs just a few months.

Now what you are being told about speech therapy, in my opinion, is a bunch of

hogwash. Annika has received speech therapy ever since she has been a year old.

I fought for these services for the simple reason that it would give her another

session each week where she would be working on listening and working on her

oral skills. Though I find it very ironic. I asked for speech and kind of

pushed for it and Annika did receive it. Another family in my special ed coop

has asked for speech therapy for her son and was told that he did not need it

yet. He is now 19 months old. But because we have been working together and I

have been making sure that we are at each other meetings she is now getting

speech for her son starting this summer. Basically you can't tell one family

that your child qualifies and then tell another family that they don't. When I

asked for the speech therapy Annika's hearing loss was pretty close to where the

other child's hearing is right now. They were giving that family two hours a

month of services whereas Annika was receiving 3 hours of services a week. The

difference between the two. I knew to ask for more. The other family asked and

they just kind of didn't respond so she thought maybe I am getting enough. I

didn't really take no for an answer. If I didn't think that they were

adequately providing for her, I would either keep pushing or go to the medical

community and receive it. Once I went to the outside, then they figured that

they should maybe provide it and the next thing I knew it was happening. I

think sometimes you just have to let them know that you are not going to take no

for an answer.

Annika actually has the opposite, she has hypertonic(high tone) muscles. This

is because of the bacterial meningitis that she had. But the sensory issues in

some ways would come with hearing impaired kids. Annika always has to touch and

feel everything. Even to the point that she would put many things in her

mouth(even when she was beyond the age appropriate level). This is because

since she wasn't hearing well she had to discover things in different manners or

nontypical manners. It has gotten better ever since she has been implanted but

she is hearing much more now. I would think that it would be typical for a

child who is struggling to hear to use her other senses to explore

Mom of 4

Marcus 13

12

Jon 10

Annika 2

bilaterally implanted 3/1/04

hookup 3/25/04

To visit your group on the web, go to:

http://groups.yahoo.com/group/Listen-Up/

a..

[Guest guest]

Speech Therapy and CI candidacy & some other questions

Sara said " So...anyways...what do you all know about CI

candidacy? We have submitted her records to s Hopkins to see what they

say. "

I know that I have heard that each implant center does set some of the

candidacy guidelines themselves. In my personal opinion, I would not give up.

I would keep trying to find a center where they would take her as a candidate.

I say this because my daughter was bilaterally implanted a little over 3 months

ago. Now she was profound in both ears and was getting no information in her

left ear with the hearing aids. But in her right ear she was getting more

information out of her hearing aids than anyone ever thought possible. But

because of two factors, we choose the bilateral. One she was losing her hearing

as time went along(because of ossification) and they wanted to implant her now

before they would be able to. And yet when they did the evaluation of her she

scored higher than most of the kids that are implanted. When they tested her

right ear with the aid on she was hearing down to 35-40 dbcls. But since we had

tried aids for over 1 1/2 years and she was struggling with oral communication

obviously what she was hearing was not giving her enough information. From what

I understood, at least at my implant center, they do look at each ear

individually. If she is profound in the one ear and cannot use hearing aids in

that ear then she should be a candidate for CI in that ear. She could always

use the hearing aid in the other ear. But sometimes they want the kids to be

aided for a year vs just a few months.

Now what you are being told about speech therapy, in my opinion, is a bunch of

hogwash. Annika has received speech therapy ever since she has been a year old.

I fought for these services for the simple reason that it would give her another

session each week where she would be working on listening and working on her

oral skills. Though I find it very ironic. I asked for speech and kind of

pushed for it and Annika did receive it. Another family in my special ed coop

has asked for speech therapy for her son and was told that he did not need it

yet. He is now 19 months old. But because we have been working together and I

have been making sure that we are at each other meetings she is now getting

speech for her son starting this summer. Basically you can't tell one family

that your child qualifies and then tell another family that they don't. When I

asked for the speech therapy Annika's hearing loss was pretty close to where the

other child's hearing is right now. They were giving that family two hours a

month of services whereas Annika was receiving 3 hours of services a week. The

difference between the two. I knew to ask for more. The other family asked and

they just kind of didn't respond so she thought maybe I am getting enough. I

didn't really take no for an answer. If I didn't think that they were

adequately providing for her, I would either keep pushing or go to the medical

community and receive it. Once I went to the outside, then they figured that

they should maybe provide it and the next thing I knew it was happening. I

think sometimes you just have to let them know that you are not going to take no

for an answer.

Annika actually has the opposite, she has hypertonic(high tone) muscles. This

is because of the bacterial meningitis that she had. But the sensory issues in

some ways would come with hearing impaired kids. Annika always has to touch and

feel everything. Even to the point that she would put many things in her

mouth(even when she was beyond the age appropriate level). This is because

since she wasn't hearing well she had to discover things in different manners or

nontypical manners. It has gotten better ever since she has been implanted but

she is hearing much more now. I would think that it would be typical for a

child who is struggling to hear to use her other senses to explore

Mom of 4

Marcus 13

12

Jon 10

Annika 2

bilaterally implanted 3/1/04

hookup 3/25/04

To visit your group on the web, go to:

http://groups.yahoo.com/group/Listen-Up/

a..

[Guest guest]

Sara,

You wrote: " So, originally we assumed she would get a CI in her right ear.

However, she was denied candidacy by one clinic. "

Do check around, each clinic has their own standards. We had one family at our

school that went to 3 different doctors and all had varying opions, ie Mondini

Syndrome, no Mondini but EVAS, both Mondini and EVAS, as well as differing

opinions on whether they would implant.

You wrote: " We have been told by EI that she doesn't

need speech therapy because she's not trying to form words yet. "

That is a bunch of bologna! She should definitely be getting speech. The early

intervention only goes until they are 3 years old in my area and I guess it is

that way everywhere. So, they need to get her going. My daughter wasn't

diagnosed until she was 2 1/2 years old, but I got a fantastic EI case worker,

who knew we didn't have much time, so she got speech 3 x a week. (they normally

prescribe 2 x week).

You wrote: " does anyone else have problems with hypotonia (low muscle tone) and

sensory issues. "

We didn't have issues with hypotonia, so I don't know anything about that, but

my daughter did have some pretty major sensory integration issues. I took her

to occupational therapy for that, and some of them have remarkably been

alleviated. I did hear that sensory issues are common in hearing impaired

children. Make sure to ask EI for that too!

Don't feel badly about Tessa not talking yet, you will get there....and then

when she won't stop talking you'll quietly think to yourself, " did I really wish

for this?! " Just kidding.

Best of luck to you.

Robin

Brittney, 6, severe snhl

, 4, hearing

[Guest guest]

Sara,

You wrote: " So, originally we assumed she would get a CI in her right ear.

However, she was denied candidacy by one clinic. "

Do check around, each clinic has their own standards. We had one family at our

school that went to 3 different doctors and all had varying opions, ie Mondini

Syndrome, no Mondini but EVAS, both Mondini and EVAS, as well as differing

opinions on whether they would implant.

You wrote: " We have been told by EI that she doesn't

need speech therapy because she's not trying to form words yet. "

That is a bunch of bologna! She should definitely be getting speech. The early

intervention only goes until they are 3 years old in my area and I guess it is

that way everywhere. So, they need to get her going. My daughter wasn't

diagnosed until she was 2 1/2 years old, but I got a fantastic EI case worker,

who knew we didn't have much time, so she got speech 3 x a week. (they normally

prescribe 2 x week).

You wrote: " does anyone else have problems with hypotonia (low muscle tone) and

sensory issues. "

We didn't have issues with hypotonia, so I don't know anything about that, but

my daughter did have some pretty major sensory integration issues. I took her

to occupational therapy for that, and some of them have remarkably been

alleviated. I did hear that sensory issues are common in hearing impaired

children. Make sure to ask EI for that too!

Don't feel badly about Tessa not talking yet, you will get there....and then

when she won't stop talking you'll quietly think to yourself, " did I really wish

for this?! " Just kidding.

Best of luck to you.

Robin

Brittney, 6, severe snhl

, 4, hearing

[Guest guest]

Sara,

You wrote: " So, originally we assumed she would get a CI in her right ear.

However, she was denied candidacy by one clinic. "

Do check around, each clinic has their own standards. We had one family at our

school that went to 3 different doctors and all had varying opions, ie Mondini

Syndrome, no Mondini but EVAS, both Mondini and EVAS, as well as differing

opinions on whether they would implant.

You wrote: " We have been told by EI that she doesn't

need speech therapy because she's not trying to form words yet. "

That is a bunch of bologna! She should definitely be getting speech. The early

intervention only goes until they are 3 years old in my area and I guess it is

that way everywhere. So, they need to get her going. My daughter wasn't

diagnosed until she was 2 1/2 years old, but I got a fantastic EI case worker,

who knew we didn't have much time, so she got speech 3 x a week. (they normally

prescribe 2 x week).

You wrote: " does anyone else have problems with hypotonia (low muscle tone) and

sensory issues. "

We didn't have issues with hypotonia, so I don't know anything about that, but

my daughter did have some pretty major sensory integration issues. I took her

to occupational therapy for that, and some of them have remarkably been

alleviated. I did hear that sensory issues are common in hearing impaired

children. Make sure to ask EI for that too!

Don't feel badly about Tessa not talking yet, you will get there....and then

when she won't stop talking you'll quietly think to yourself, " did I really wish

for this?! " Just kidding.

Best of luck to you.

Robin

Brittney, 6, severe snhl

, 4, hearing

[Guest guest]

My son, Ben, started receiving speech therapy services through our EI at 2

months old. I thought it was pretty funny at the time -- he wasn't even

babbling yet -- but it was really about language input. Simple sentences,

over and over and over. From there, the speech therapist worked on oral

motor skills: blowing bubbles, blowing feathers, eating peanut butter, etc.

Then on forming sounds over and over. It wasn't about articulation at first,

but just about making sounds and learning language. That's the kind of

therapy your daughter needs now.

BTW, Ben's loss is severe to profound -- 80 db in his better ear (I think it

slowly progressed down from 70 db) -- he's had hearing aids and intensive

intervention from 3 months, and he's fully oral at this time. Every kid is

different, your mileage may vary. But people never cease to be amazed at how

well he does with his aids. And he is a candidate for a CI, according to our

local Children's Hospital.

Good luck!

Stefanie

mom to Ben, 5, severe to profound HOH, Widex Senso P38s, and Isabella, 9,

mild loss, unaided

[Guest guest]

My son, Ben, started receiving speech therapy services through our EI at 2

months old. I thought it was pretty funny at the time -- he wasn't even

babbling yet -- but it was really about language input. Simple sentences,

over and over and over. From there, the speech therapist worked on oral

motor skills: blowing bubbles, blowing feathers, eating peanut butter, etc.

Then on forming sounds over and over. It wasn't about articulation at first,

but just about making sounds and learning language. That's the kind of

therapy your daughter needs now.

BTW, Ben's loss is severe to profound -- 80 db in his better ear (I think it

slowly progressed down from 70 db) -- he's had hearing aids and intensive

intervention from 3 months, and he's fully oral at this time. Every kid is

different, your mileage may vary. But people never cease to be amazed at how

well he does with his aids. And he is a candidate for a CI, according to our

local Children's Hospital.

Good luck!

Stefanie

mom to Ben, 5, severe to profound HOH, Widex Senso P38s, and Isabella, 9,

mild loss, unaided

[Guest guest]

My son, Ben, started receiving speech therapy services through our EI at 2

months old. I thought it was pretty funny at the time -- he wasn't even

babbling yet -- but it was really about language input. Simple sentences,

over and over and over. From there, the speech therapist worked on oral

motor skills: blowing bubbles, blowing feathers, eating peanut butter, etc.

Then on forming sounds over and over. It wasn't about articulation at first,

but just about making sounds and learning language. That's the kind of

therapy your daughter needs now.

BTW, Ben's loss is severe to profound -- 80 db in his better ear (I think it

slowly progressed down from 70 db) -- he's had hearing aids and intensive

intervention from 3 months, and he's fully oral at this time. Every kid is

different, your mileage may vary. But people never cease to be amazed at how

well he does with his aids. And he is a candidate for a CI, according to our

local Children's Hospital.

Good luck!

Stefanie

mom to Ben, 5, severe to profound HOH, Widex Senso P38s, and Isabella, 9,

mild loss, unaided

[Guest guest]

Sara,

Ditto to all that the previous posters have said. I'd ask the EI office to

clarify what they mean by speech therapy; if they are inexperienced with HOH

infants and toddlers, they may be unaware of all that can be stimulated in a

child with only two months of hearing, as your daughter. Sounds like they

need a large dose of education.

Your pediatrician, ENT and audiologist can be instrumental in documenting

why these services are essential to your child. You can also request an

IFSP meeting to discuss why you feel your child's needs are not being met

and/or determine whether the EI people involved are as educated as they need

to be.

Lots of luck to you,

Kerry

Speech Therapy and CI candidacy & some other questions

> Hi all,

> I haven't really been posting much here, but I did have a few questions.

My

> dd has severe to profound hearing loss in both ears. her left ear is 70dB

> (pretty much across the board), though it used to be 90dB at 250 hz and

went

> up to 70dB as the frequencies got higher (backwards of typical HL).

> Somehow, though, her low frequency hearing has improved...we aren't sure

if

> it was because a little wax was removed or because she is learning to

> listen. She is 21 mo old and has no words or even consonant sounds. She

> had her aid for about 2 months. She is only aided in her left ear. Her

> right is much worse hearing and is classified as profound....90dB and up.

> So, originally we assumed she would get a CI in her right ear. However,

she

> was denied candidacy by one clinic. They said her Speech awareness

> threshold was 65dB...which I highly doubt...she's never turned to my

voice,

> even if it is raised. So...anyways...what do you all know about CI

> candidacy? We have submitted her records to s Hopkins to see what

they

> say.

>

> Next question is speech therapy. We have been told by EI that she doesn't

> need speech therapy because she's not trying to form words yet. However,

I

> would seem to think that if she had a speech therapist who was experienced

> working with deaf children, then she could teach her sound awareness. Not

> sure what I think about whether she needs it or not. Sometimes I feel

like

> EI is blowing us off because they don't want to give us anymore services.

> It's irritating.

>

> Finally, does anyone else have problems with hypotonia (low muscle tone)

and

> sensory issues. Tessa rolls on the floor a lot and bounces on the couch a

> lot. She also has these periods where she will take our hands and squeeze

> them against her cheeks and hold them there. Her special ed teacher

thinks

> that she has sensory issues and suggested that we put her on a " sensory

> diet " meaning that we help her get that sensory stimulation she needs.

> Anyone else have problems with this? could it be a syndrome that we just

> don't know about? Well...thanks for all your answers in advance. I

> appreciate you all being here. It's nice to talk to people who have an

idea

> what it's like...since all tessa's friends are talking all over the place

> now. it makes me very sad sometimes...i just want my little girl to

> talk. she does sign though.

>

> Thanks again,

> Sara

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

[Guest guest]

Sara,

Ditto to all that the previous posters have said. I'd ask the EI office to

clarify what they mean by speech therapy; if they are inexperienced with HOH

infants and toddlers, they may be unaware of all that can be stimulated in a

child with only two months of hearing, as your daughter. Sounds like they

need a large dose of education.

Your pediatrician, ENT and audiologist can be instrumental in documenting

why these services are essential to your child. You can also request an

IFSP meeting to discuss why you feel your child's needs are not being met

and/or determine whether the EI people involved are as educated as they need

to be.

Lots of luck to you,

Kerry

Speech Therapy and CI candidacy & some other questions

> Hi all,

> I haven't really been posting much here, but I did have a few questions.

My

> dd has severe to profound hearing loss in both ears. her left ear is 70dB

> (pretty much across the board), though it used to be 90dB at 250 hz and

went

> up to 70dB as the frequencies got higher (backwards of typical HL).

> Somehow, though, her low frequency hearing has improved...we aren't sure

if

> it was because a little wax was removed or because she is learning to

> listen. She is 21 mo old and has no words or even consonant sounds. She

> had her aid for about 2 months. She is only aided in her left ear. Her

> right is much worse hearing and is classified as profound....90dB and up.

> So, originally we assumed she would get a CI in her right ear. However,

she

> was denied candidacy by one clinic. They said her Speech awareness

> threshold was 65dB...which I highly doubt...she's never turned to my

voice,

> even if it is raised. So...anyways...what do you all know about CI

> candidacy? We have submitted her records to s Hopkins to see what

they

> say.

>

> Next question is speech therapy. We have been told by EI that she doesn't

> need speech therapy because she's not trying to form words yet. However,

I

> would seem to think that if she had a speech therapist who was experienced

> working with deaf children, then she could teach her sound awareness. Not

> sure what I think about whether she needs it or not. Sometimes I feel

like

> EI is blowing us off because they don't want to give us anymore services.

> It's irritating.

>

> Finally, does anyone else have problems with hypotonia (low muscle tone)

and

> sensory issues. Tessa rolls on the floor a lot and bounces on the couch a

> lot. She also has these periods where she will take our hands and squeeze

> them against her cheeks and hold them there. Her special ed teacher

thinks

> that she has sensory issues and suggested that we put her on a " sensory

> diet " meaning that we help her get that sensory stimulation she needs.

> Anyone else have problems with this? could it be a syndrome that we just

> don't know about? Well...thanks for all your answers in advance. I

> appreciate you all being here. It's nice to talk to people who have an

idea

> what it's like...since all tessa's friends are talking all over the place

> now. it makes me very sad sometimes...i just want my little girl to

> talk. she does sign though.

>

> Thanks again,

> Sara

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

[Guest guest]

Sara,

Ditto to all that the previous posters have said. I'd ask the EI office to

clarify what they mean by speech therapy; if they are inexperienced with HOH

infants and toddlers, they may be unaware of all that can be stimulated in a

child with only two months of hearing, as your daughter. Sounds like they

need a large dose of education.

Your pediatrician, ENT and audiologist can be instrumental in documenting

why these services are essential to your child. You can also request an

IFSP meeting to discuss why you feel your child's needs are not being met

and/or determine whether the EI people involved are as educated as they need

to be.

Lots of luck to you,

Kerry

Speech Therapy and CI candidacy & some other questions

> Hi all,

> I haven't really been posting much here, but I did have a few questions.

My

> dd has severe to profound hearing loss in both ears. her left ear is 70dB

> (pretty much across the board), though it used to be 90dB at 250 hz and

went

> up to 70dB as the frequencies got higher (backwards of typical HL).

> Somehow, though, her low frequency hearing has improved...we aren't sure

if

> it was because a little wax was removed or because she is learning to

> listen. She is 21 mo old and has no words or even consonant sounds. She

> had her aid for about 2 months. She is only aided in her left ear. Her

> right is much worse hearing and is classified as profound....90dB and up.

> So, originally we assumed she would get a CI in her right ear. However,

she

> was denied candidacy by one clinic. They said her Speech awareness

> threshold was 65dB...which I highly doubt...she's never turned to my

voice,

> even if it is raised. So...anyways...what do you all know about CI

> candidacy? We have submitted her records to s Hopkins to see what

they

> say.

>

> Next question is speech therapy. We have been told by EI that she doesn't

> need speech therapy because she's not trying to form words yet. However,

I

> would seem to think that if she had a speech therapist who was experienced

> working with deaf children, then she could teach her sound awareness. Not

> sure what I think about whether she needs it or not. Sometimes I feel

like

> EI is blowing us off because they don't want to give us anymore services.

> It's irritating.

>

> Finally, does anyone else have problems with hypotonia (low muscle tone)

and

> sensory issues. Tessa rolls on the floor a lot and bounces on the couch a

> lot. She also has these periods where she will take our hands and squeeze

> them against her cheeks and hold them there. Her special ed teacher

thinks

> that she has sensory issues and suggested that we put her on a " sensory

> diet " meaning that we help her get that sensory stimulation she needs.

> Anyone else have problems with this? could it be a syndrome that we just

> don't know about? Well...thanks for all your answers in advance. I

> appreciate you all being here. It's nice to talk to people who have an

idea

> what it's like...since all tessa's friends are talking all over the place

> now. it makes me very sad sometimes...i just want my little girl to

> talk. she does sign though.

>

> Thanks again,

> Sara

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

[Guest guest]

Hi Sara,

My daughter has a moderate to severe hearing loss and we enrolled her in EI

at two months of age. We received many services through EI, AV/Teacher of

the deaf, and speech. At 2 1/2 she went to a speech group preschool setting

through EI 3 days a week. We also received OT for Sensory Issues, and PT for

low tone. le was born 7 weeks premature. EI can do an evaluation for

sensory issues. We have been through genetics 4 times and she can't be

placed in a syndrome. She has other issues besides. She will be 6 in

September. She has overcome many of her sensory issues through therapy, but

still has some mild sensory issues. She no longer receives PT for

hypotonia, she was discharged from her private PT around 4 years of age.

le made alot of sounds but it seemed to take forever for her speech to

take off, alot of that was due to she was underaided for 3 years, due to

inconsistencies in her hearing test. Once she was aided properly her speech

really took off. We never thought we would see the day, but now she

literally doesn't stop talking all day. Sometimes I wish for just 5 minutes

to think, and then I feel guilty I thought that. Hang in there. There is

plenty of input EI can do even with infants. Feel free to email me if I can

help in anyway with the sensory issues or any other issues. Take care and

hang in there, it does get easier.

Take Care

Colleen

Mom to le 5 moderate to severe hearing loss, asthma, allergies, etc.

Mom to 10 hearing, asthma and allergies.

Speech Therapy and CI candidacy & some other questions

> Hi all,

> I haven't really been posting much here, but I did have a few questions.

My

> dd has severe to profound hearing loss in both ears. her left ear is 70dB

> (pretty much across the board), though it used to be 90dB at 250 hz and

went

> up to 70dB as the frequencies got higher (backwards of typical HL).

> Somehow, though, her low frequency hearing has improved...we aren't sure

if

> it was because a little wax was removed or because she is learning to

> listen. She is 21 mo old and has no words or even consonant sounds. She

> had her aid for about 2 months. She is only aided in her left ear. Her

> right is much worse hearing and is classified as profound....90dB and up.

> So, originally we assumed she would get a CI in her right ear. However,

she

> was denied candidacy by one clinic. They said her Speech awareness

> threshold was 65dB...which I highly doubt...she's never turned to my

voice,

> even if it is raised. So...anyways...what do you all know about CI

> candidacy? We have submitted her records to s Hopkins to see what

they

> say.

>

> Next question is speech therapy. We have been told by EI that she doesn't

> need speech therapy because she's not trying to form words yet. However,

I

> would seem to think that if she had a speech therapist who was experienced

> working with deaf children, then she could teach her sound awareness. Not

> sure what I think about whether she needs it or not. Sometimes I feel

like

> EI is blowing us off because they don't want to give us anymore services.

> It's irritating.

>

> Finally, does anyone else have problems with hypotonia (low muscle tone)

and

> sensory issues. Tessa rolls on the floor a lot and bounces on the couch a

> lot. She also has these periods where she will take our hands and squeeze

> them against her cheeks and hold them there. Her special ed teacher

thinks

> that she has sensory issues and suggested that we put her on a " sensory

> diet " meaning that we help her get that sensory stimulation she needs.

> Anyone else have problems with this? could it be a syndrome that we just

> don't know about? Well...thanks for all your answers in advance. I

> appreciate you all being here. It's nice to talk to people who have an

idea

> what it's like...since all tessa's friends are talking all over the place

> now. it makes me very sad sometimes...i just want my little girl to

> talk. she does sign though.

>

> Thanks again,

> Sara

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

[Guest guest]

Hi Sara,

My daughter has a moderate to severe hearing loss and we enrolled her in EI

at two months of age. We received many services through EI, AV/Teacher of

the deaf, and speech. At 2 1/2 she went to a speech group preschool setting

through EI 3 days a week. We also received OT for Sensory Issues, and PT for

low tone. le was born 7 weeks premature. EI can do an evaluation for

sensory issues. We have been through genetics 4 times and she can't be

placed in a syndrome. She has other issues besides. She will be 6 in

September. She has overcome many of her sensory issues through therapy, but

still has some mild sensory issues. She no longer receives PT for

hypotonia, she was discharged from her private PT around 4 years of age.

le made alot of sounds but it seemed to take forever for her speech to

take off, alot of that was due to she was underaided for 3 years, due to

inconsistencies in her hearing test. Once she was aided properly her speech

really took off. We never thought we would see the day, but now she

literally doesn't stop talking all day. Sometimes I wish for just 5 minutes

to think, and then I feel guilty I thought that. Hang in there. There is

plenty of input EI can do even with infants. Feel free to email me if I can

help in anyway with the sensory issues or any other issues. Take care and

hang in there, it does get easier.

Take Care

Colleen

Mom to le 5 moderate to severe hearing loss, asthma, allergies, etc.

Mom to 10 hearing, asthma and allergies.

Speech Therapy and CI candidacy & some other questions

> Hi all,

> I haven't really been posting much here, but I did have a few questions.

My

> dd has severe to profound hearing loss in both ears. her left ear is 70dB

> (pretty much across the board), though it used to be 90dB at 250 hz and

went

> up to 70dB as the frequencies got higher (backwards of typical HL).

> Somehow, though, her low frequency hearing has improved...we aren't sure

if

> it was because a little wax was removed or because she is learning to

> listen. She is 21 mo old and has no words or even consonant sounds. She

> had her aid for about 2 months. She is only aided in her left ear. Her

> right is much worse hearing and is classified as profound....90dB and up.

> So, originally we assumed she would get a CI in her right ear. However,

she

> was denied candidacy by one clinic. They said her Speech awareness

> threshold was 65dB...which I highly doubt...she's never turned to my

voice,

> even if it is raised. So...anyways...what do you all know about CI

> candidacy? We have submitted her records to s Hopkins to see what

they

> say.

>

> Next question is speech therapy. We have been told by EI that she doesn't

> need speech therapy because she's not trying to form words yet. However,

I

> would seem to think that if she had a speech therapist who was experienced

> working with deaf children, then she could teach her sound awareness. Not

> sure what I think about whether she needs it or not. Sometimes I feel

like

> EI is blowing us off because they don't want to give us anymore services.

> It's irritating.

>

> Finally, does anyone else have problems with hypotonia (low muscle tone)

and

> sensory issues. Tessa rolls on the floor a lot and bounces on the couch a

> lot. She also has these periods where she will take our hands and squeeze

> them against her cheeks and hold them there. Her special ed teacher

thinks

> that she has sensory issues and suggested that we put her on a " sensory

> diet " meaning that we help her get that sensory stimulation she needs.

> Anyone else have problems with this? could it be a syndrome that we just

> don't know about? Well...thanks for all your answers in advance. I

> appreciate you all being here. It's nice to talk to people who have an

idea

> what it's like...since all tessa's friends are talking all over the place

> now. it makes me very sad sometimes...i just want my little girl to

> talk. she does sign though.

>

> Thanks again,

> Sara

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

[Guest guest]

Hi Sara,

My daughter has a moderate to severe hearing loss and we enrolled her in EI

at two months of age. We received many services through EI, AV/Teacher of

the deaf, and speech. At 2 1/2 she went to a speech group preschool setting

through EI 3 days a week. We also received OT for Sensory Issues, and PT for

low tone. le was born 7 weeks premature. EI can do an evaluation for

sensory issues. We have been through genetics 4 times and she can't be

placed in a syndrome. She has other issues besides. She will be 6 in

September. She has overcome many of her sensory issues through therapy, but

still has some mild sensory issues. She no longer receives PT for

hypotonia, she was discharged from her private PT around 4 years of age.

le made alot of sounds but it seemed to take forever for her speech to

take off, alot of that was due to she was underaided for 3 years, due to

inconsistencies in her hearing test. Once she was aided properly her speech

really took off. We never thought we would see the day, but now she

literally doesn't stop talking all day. Sometimes I wish for just 5 minutes

to think, and then I feel guilty I thought that. Hang in there. There is

plenty of input EI can do even with infants. Feel free to email me if I can

help in anyway with the sensory issues or any other issues. Take care and

hang in there, it does get easier.

Take Care

Colleen

Mom to le 5 moderate to severe hearing loss, asthma, allergies, etc.

Mom to 10 hearing, asthma and allergies.

Speech Therapy and CI candidacy & some other questions

> Hi all,

> I haven't really been posting much here, but I did have a few questions.

My

> dd has severe to profound hearing loss in both ears. her left ear is 70dB

> (pretty much across the board), though it used to be 90dB at 250 hz and

went

> up to 70dB as the frequencies got higher (backwards of typical HL).

> Somehow, though, her low frequency hearing has improved...we aren't sure

if

> it was because a little wax was removed or because she is learning to

> listen. She is 21 mo old and has no words or even consonant sounds. She

> had her aid for about 2 months. She is only aided in her left ear. Her

> right is much worse hearing and is classified as profound....90dB and up.

> So, originally we assumed she would get a CI in her right ear. However,

she

> was denied candidacy by one clinic. They said her Speech awareness

> threshold was 65dB...which I highly doubt...she's never turned to my

voice,

> even if it is raised. So...anyways...what do you all know about CI

> candidacy? We have submitted her records to s Hopkins to see what

they

> say.

>

> Next question is speech therapy. We have been told by EI that she doesn't

> need speech therapy because she's not trying to form words yet. However,

I

> would seem to think that if she had a speech therapist who was experienced

> working with deaf children, then she could teach her sound awareness. Not

> sure what I think about whether she needs it or not. Sometimes I feel

like

> EI is blowing us off because they don't want to give us anymore services.

> It's irritating.

>

> Finally, does anyone else have problems with hypotonia (low muscle tone)

and

> sensory issues. Tessa rolls on the floor a lot and bounces on the couch a

> lot. She also has these periods where she will take our hands and squeeze

> them against her cheeks and hold them there. Her special ed teacher

thinks

> that she has sensory issues and suggested that we put her on a " sensory

> diet " meaning that we help her get that sensory stimulation she needs.

> Anyone else have problems with this? could it be a syndrome that we just

> don't know about? Well...thanks for all your answers in advance. I

> appreciate you all being here. It's nice to talk to people who have an

idea

> what it's like...since all tessa's friends are talking all over the place

> now. it makes me very sad sometimes...i just want my little girl to

> talk. she does sign though.

>

> Thanks again,

> Sara

>

>

>

>

>

> All messages posted to this list are private and confidential. Each post

is the intellectual property of the author and therefore subject to

copyright restrictions.

>

[Guest guest]

Colleen,

Sounds like le has some similar problems to Tessa. I wonder if there

is a syndrome they haven't pinpointed yet. I have often wondering if her

loss is sydromatic because sometimes she just doesn't seem as developed as

other children, but then I think that language is huge at this age, so

that's most likely what makes her seem so far behind. Interesting that

le seemed to have some of the same problems. That was something I was

definitely curious about.

Sara

Tessa 21 mo

>

>Reply-To: Listen-Up

>To: <Listen-Up >

>Subject: Re: Speech Therapy and CI candidacy & some other

>questions

>Date: Fri, 25 Jun 2004 23:35:13 -0400

>

>Hi Sara,

>My daughter has a moderate to severe hearing loss and we enrolled her in EI

>at two months of age. We received many services through EI, AV/Teacher of

>the deaf, and speech. At 2 1/2 she went to a speech group preschool setting

>through EI 3 days a week. We also received OT for Sensory Issues, and PT

>for

>low tone. le was born 7 weeks premature. EI can do an evaluation for

>sensory issues. We have been through genetics 4 times and she can't be

>placed in a syndrome. She has other issues besides. She will be 6 in

>September. She has overcome many of her sensory issues through therapy,

>but

>still has some mild sensory issues. She no longer receives PT for

>hypotonia, she was discharged from her private PT around 4 years of age.

>le made alot of sounds but it seemed to take forever for her speech

>to

>take off, alot of that was due to she was underaided for 3 years, due to

>inconsistencies in her hearing test. Once she was aided properly her speech

>really took off. We never thought we would see the day, but now she

>literally doesn't stop talking all day. Sometimes I wish for just 5

>minutes

>to think, and then I feel guilty I thought that. Hang in there. There is

>plenty of input EI can do even with infants. Feel free to email me if I

>can

>help in anyway with the sensory issues or any other issues. Take care and

>hang in there, it does get easier.

>Take Care

>Colleen

>Mom to le 5 moderate to severe hearing loss, asthma, allergies, etc.

>Mom to 10 hearing, asthma and allergies.

> Speech Therapy and CI candidacy & some other questions

>

>

> > Hi all,

> > I haven't really been posting much here, but I did have a few questions.

>My

> > dd has severe to profound hearing loss in both ears. her left ear is

>70dB

> > (pretty much across the board), though it used to be 90dB at 250 hz and

>went

> > up to 70dB as the frequencies got higher (backwards of typical HL).

> > Somehow, though, her low frequency hearing has improved...we aren't sure

>if

> > it was because a little wax was removed or because she is learning to

> > listen. She is 21 mo old and has no words or even consonant sounds.

>She

> > had her aid for about 2 months. She is only aided in her left ear. Her

> > right is much worse hearing and is classified as profound....90dB and

>up.

> > So, originally we assumed she would get a CI in her right ear. However,

>she

> > was denied candidacy by one clinic. They said her Speech awareness

> > threshold was 65dB...which I highly doubt...she's never turned to my

>voice,

> > even if it is raised. So...anyways...what do you all know about CI

> > candidacy? We have submitted her records to s Hopkins to see what

>they

> > say.

> >

> > Next question is speech therapy. We have been told by EI that she

>doesn't

> > need speech therapy because she's not trying to form words yet.

>However,

>I

> > would seem to think that if she had a speech therapist who was

>experienced

> > working with deaf children, then she could teach her sound awareness.

>Not

> > sure what I think about whether she needs it or not. Sometimes I feel

>like

> > EI is blowing us off because they don't want to give us anymore

>services.

> > It's irritating.

> >

> > Finally, does anyone else have problems with hypotonia (low muscle tone)

>and

> > sensory issues. Tessa rolls on the floor a lot and bounces on the couch

>a

> > lot. She also has these periods where she will take our hands and

>squeeze

> > them against her cheeks and hold them there. Her special ed teacher

>thinks

> > that she has sensory issues and suggested that we put her on a " sensory

> > diet " meaning that we help her get that sensory stimulation she needs.

> > Anyone else have problems with this? could it be a syndrome that we

>just

> > don't know about? Well...thanks for all your answers in advance. I

> > appreciate you all being here. It's nice to talk to people who have an

>idea

> > what it's like...since all tessa's friends are talking all over the

>place

> > now. it makes me very sad sometimes...i just want my little girl to

> > talk. she does sign though.

> >

> > Thanks again,

> > Sara

> >

> >

> >

> >

> >

> > All messages posted to this list are private and confidential. Each

>post

>is the intellectual property of the author and therefore subject to

>copyright restrictions.

> >

[Guest guest]

Colleen,

Sounds like le has some similar problems to Tessa. I wonder if there

is a syndrome they haven't pinpointed yet. I have often wondering if her

loss is sydromatic because sometimes she just doesn't seem as developed as

other children, but then I think that language is huge at this age, so

that's most likely what makes her seem so far behind. Interesting that

le seemed to have some of the same problems. That was something I was

definitely curious about.

Sara

Tessa 21 mo

>

>Reply-To: Listen-Up

>To: <Listen-Up >

>Subject: Re: Speech Therapy and CI candidacy & some other

>questions

>Date: Fri, 25 Jun 2004 23:35:13 -0400

>

>Hi Sara,

>My daughter has a moderate to severe hearing loss and we enrolled her in EI

>at two months of age. We received many services through EI, AV/Teacher of

>the deaf, and speech. At 2 1/2 she went to a speech group preschool setting

>through EI 3 days a week. We also received OT for Sensory Issues, and PT

>for

>low tone. le was born 7 weeks premature. EI can do an evaluation for

>sensory issues. We have been through genetics 4 times and she can't be

>placed in a syndrome. She has other issues besides. She will be 6 in

>September. She has overcome many of her sensory issues through therapy,

>but

>still has some mild sensory issues. She no longer receives PT for

>hypotonia, she was discharged from her private PT around 4 years of age.

>le made alot of sounds but it seemed to take forever for her speech

>to

>take off, alot of that was due to she was underaided for 3 years, due to

>inconsistencies in her hearing test. Once she was aided properly her speech

>really took off. We never thought we would see the day, but now she

>literally doesn't stop talking all day. Sometimes I wish for just 5

>minutes

>to think, and then I feel guilty I thought that. Hang in there. There is

>plenty of input EI can do even with infants. Feel free to email me if I

>can

>help in anyway with the sensory issues or any other issues. Take care and

>hang in there, it does get easier.

>Take Care

>Colleen

>Mom to le 5 moderate to severe hearing loss, asthma, allergies, etc.

>Mom to 10 hearing, asthma and allergies.

> Speech Therapy and CI candidacy & some other questions

>

>

> > Hi all,

> > I haven't really been posting much here, but I did have a few questions.

>My

> > dd has severe to profound hearing loss in both ears. her left ear is

>70dB

> > (pretty much across the board), though it used to be 90dB at 250 hz and

>went

> > up to 70dB as the frequencies got higher (backwards of typical HL).

> > Somehow, though, her low frequency hearing has improved...we aren't sure

>if

> > it was because a little wax was removed or because she is learning to

> > listen. She is 21 mo old and has no words or even consonant sounds.

>She

> > had her aid for about 2 months. She is only aided in her left ear. Her

> > right is much worse hearing and is classified as profound....90dB and

>up.

> > So, originally we assumed she would get a CI in her right ear. However,

>she

> > was denied candidacy by one clinic. They said her Speech awareness

> > threshold was 65dB...which I highly doubt...she's never turned to my

>voice,

> > even if it is raised. So...anyways...what do you all know about CI

> > candidacy? We have submitted her records to s Hopkins to see what

>they

> > say.

> >

> > Next question is speech therapy. We have been told by EI that she

>doesn't

> > need speech therapy because she's not trying to form words yet.

>However,

>I

> > would seem to think that if she had a speech therapist who was

>experienced

> > working with deaf children, then she could teach her sound awareness.

>Not

> > sure what I think about whether she needs it or not. Sometimes I feel

>like

> > EI is blowing us off because they don't want to give us anymore

>services.

> > It's irritating.

> >

> > Finally, does anyone else have problems with hypotonia (low muscle tone)

>and

> > sensory issues. Tessa rolls on the floor a lot and bounces on the couch

>a

> > lot. She also has these periods where she will take our hands and

>squeeze

> > them against her cheeks and hold them there. Her special ed teacher

>thinks

> > that she has sensory issues and suggested that we put her on a " sensory

> > diet " meaning that we help her get that sensory stimulation she needs.

> > Anyone else have problems with this? could it be a syndrome that we

>just

> > don't know about? Well...thanks for all your answers in advance. I

> > appreciate you all being here. It's nice to talk to people who have an

>idea

> > what it's like...since all tessa's friends are talking all over the

>place

> > now. it makes me very sad sometimes...i just want my little girl to

> > talk. she does sign though.

> >

> > Thanks again,

> > Sara

> >

> >

> >

> >

> >

> > All messages posted to this list are private and confidential. Each

>post

>is the intellectual property of the author and therefore subject to

>copyright restrictions.

> >

[Guest guest]

Colleen,

Sounds like le has some similar problems to Tessa. I wonder if there

is a syndrome they haven't pinpointed yet. I have often wondering if her

loss is sydromatic because sometimes she just doesn't seem as developed as

other children, but then I think that language is huge at this age, so

that's most likely what makes her seem so far behind. Interesting that

le seemed to have some of the same problems. That was something I was

definitely curious about.

Sara

Tessa 21 mo

>

>Reply-To: Listen-Up

>To: <Listen-Up >

>Subject: Re: Speech Therapy and CI candidacy & some other

>questions

>Date: Fri, 25 Jun 2004 23:35:13 -0400

>

>Hi Sara,

>My daughter has a moderate to severe hearing loss and we enrolled her in EI

>at two months of age. We received many services through EI, AV/Teacher of

>the deaf, and speech. At 2 1/2 she went to a speech group preschool setting

>through EI 3 days a week. We also received OT for Sensory Issues, and PT

>for

>low tone. le was born 7 weeks premature. EI can do an evaluation for

>sensory issues. We have been through genetics 4 times and she can't be

>placed in a syndrome. She has other issues besides. She will be 6 in

>September. She has overcome many of her sensory issues through therapy,

>but

>still has some mild sensory issues. She no longer receives PT for

>hypotonia, she was discharged from her private PT around 4 years of age.

>le made alot of sounds but it seemed to take forever for her speech

>to

>take off, alot of that was due to she was underaided for 3 years, due to

>inconsistencies in her hearing test. Once she was aided properly her speech

>really took off. We never thought we would see the day, but now she

>literally doesn't stop talking all day. Sometimes I wish for just 5

>minutes

>to think, and then I feel guilty I thought that. Hang in there. There is

>plenty of input EI can do even with infants. Feel free to email me if I

>can

>help in anyway with the sensory issues or any other issues. Take care and

>hang in there, it does get easier.

>Take Care

>Colleen

>Mom to le 5 moderate to severe hearing loss, asthma, allergies, etc.

>Mom to 10 hearing, asthma and allergies.

> Speech Therapy and CI candidacy & some other questions

>

>

> > Hi all,

> > I haven't really been posting much here, but I did have a few questions.

>My

> > dd has severe to profound hearing loss in both ears. her left ear is

>70dB

> > (pretty much across the board), though it used to be 90dB at 250 hz and

>went

> > up to 70dB as the frequencies got higher (backwards of typical HL).

> > Somehow, though, her low frequency hearing has improved...we aren't sure

>if

> > it was because a little wax was removed or because she is learning to

> > listen. She is 21 mo old and has no words or even consonant sounds.

>She

> > had her aid for about 2 months. She is only aided in her left ear. Her

> > right is much worse hearing and is classified as profound....90dB and

>up.

> > So, originally we assumed she would get a CI in her right ear. However,

>she

> > was denied candidacy by one clinic. They said her Speech awareness

> > threshold was 65dB...which I highly doubt...she's never turned to my

>voice,

> > even if it is raised. So...anyways...what do you all know about CI

> > candidacy? We have submitted her records to s Hopkins to see what

>they

> > say.

> >

> > Next question is speech therapy. We have been told by EI that she

>doesn't

> > need speech therapy because she's not trying to form words yet.

>However,

>I

> > would seem to think that if she had a speech therapist who was

>experienced

> > working with deaf children, then she could teach her sound awareness.

>Not

> > sure what I think about whether she needs it or not. Sometimes I feel

>like

> > EI is blowing us off because they don't want to give us anymore

>services.

> > It's irritating.

> >

> > Finally, does anyone else have problems with hypotonia (low muscle tone)

>and

> > sensory issues. Tessa rolls on the floor a lot and bounces on the couch

>a

> > lot. She also has these periods where she will take our hands and

>squeeze

> > them against her cheeks and hold them there. Her special ed teacher

>thinks

> > that she has sensory issues and suggested that we put her on a " sensory

> > diet " meaning that we help her get that sensory stimulation she needs.

> > Anyone else have problems with this? could it be a syndrome that we

>just

> > don't know about? Well...thanks for all your answers in advance. I

> > appreciate you all being here. It's nice to talk to people who have an

>idea

> > what it's like...since all tessa's friends are talking all over the

>place

> > now. it makes me very sad sometimes...i just want my little girl to

> > talk. she does sign though.

> >

> > Thanks again,

> > Sara

> >

> >

> >

> >

> >

> > All messages posted to this list are private and confidential. Each

>post

>is the intellectual property of the author and therefore subject to

>copyright restrictions.

> >

[Guest guest]

Hi. I just want to thank all who replied to my post. I really appreciate

it and it is wonderful to get some insight. I think I will try to push the

EI people a little harder. I think part of their problem is that Tessa will

be going to an IEP in September b/c she is going to a preschool for

HI/Language delayed children. So, I think they just don't want to give us

the services for 3 months...however, 3 months is a long time in terms of a

21 mo old. I'm very irritated with them at times. They just don't seem to

have the time, sometimes. But, that's another story. I love the lady who

comes from there to work with Tessa. She is a gem. She is trained for HI

kids, so I think they feel that is good enough. I just want Tessa to have

more help....and for me to get more training on how to help her (which they

say is their goal). I will definitely press harder and may possibly be able

to get my insurance to pay for private ST. We're fighting with them right

now to make them pay for her aid and FM system under an early intervetion

clause, although I think they'll try to get out of it. We have a clause

that says they are required to pay for assistive technology for EI kids.

However, everytime we called (before we found this clause) they told us that

they wouldn't cover the aides. So we bought them and now they are saying we

were supposed to have preauthorization. Little stinkers! It irks me, but

what can I do? So...anyways, I just wanted to say (while blabbering all of

our other issues related to Tessa's Hearing impairment), thanks a lot for

your help. All input is appreciated. And though I would wish this road on

no one, it's nice to know someone's been there before me.

On another note, for all who are interested, there is a website called

caringbride.com that allows you to journal, put up photos, and have a

guestbook for your child...it makes updating family members much easier in

regards to your child's hearing loss. Here is Tessa's page....

www.caringbridge.org/va/tessasears

Check it out if you'd like.

Sara

Tessa 21 mo.

[Guest guest]

Hi. I just want to thank all who replied to my post. I really appreciate

it and it is wonderful to get some insight. I think I will try to push the

EI people a little harder. I think part of their problem is that Tessa will

be going to an IEP in September b/c she is going to a preschool for

HI/Language delayed children. So, I think they just don't want to give us

the services for 3 months...however, 3 months is a long time in terms of a

21 mo old. I'm very irritated with them at times. They just don't seem to

have the time, sometimes. But, that's another story. I love the lady who

comes from there to work with Tessa. She is a gem. She is trained for HI

kids, so I think they feel that is good enough. I just want Tessa to have

more help....and for me to get more training on how to help her (which they

say is their goal). I will definitely press harder and may possibly be able

to get my insurance to pay for private ST. We're fighting with them right

now to make them pay for her aid and FM system under an early intervetion

clause, although I think they'll try to get out of it. We have a clause

that says they are required to pay for assistive technology for EI kids.

However, everytime we called (before we found this clause) they told us that

they wouldn't cover the aides. So we bought them and now they are saying we

were supposed to have preauthorization. Little stinkers! It irks me, but

what can I do? So...anyways, I just wanted to say (while blabbering all of

our other issues related to Tessa's Hearing impairment), thanks a lot for

your help. All input is appreciated. And though I would wish this road on

no one, it's nice to know someone's been there before me.

On another note, for all who are interested, there is a website called

caringbride.com that allows you to journal, put up photos, and have a

guestbook for your child...it makes updating family members much easier in

regards to your child's hearing loss. Here is Tessa's page....

www.caringbridge.org/va/tessasears

Check it out if you'd like.

Sara

Tessa 21 mo.

[Guest guest]

Hi. I just want to thank all who replied to my post. I really appreciate

it and it is wonderful to get some insight. I think I will try to push the

EI people a little harder. I think part of their problem is that Tessa will

be going to an IEP in September b/c she is going to a preschool for

HI/Language delayed children. So, I think they just don't want to give us

the services for 3 months...however, 3 months is a long time in terms of a

21 mo old. I'm very irritated with them at times. They just don't seem to

have the time, sometimes. But, that's another story. I love the lady who

comes from there to work with Tessa. She is a gem. She is trained for HI

kids, so I think they feel that is good enough. I just want Tessa to have

more help....and for me to get more training on how to help her (which they

say is their goal). I will definitely press harder and may possibly be able

to get my insurance to pay for private ST. We're fighting with them right

now to make them pay for her aid and FM system under an early intervetion

clause, although I think they'll try to get out of it. We have a clause

that says they are required to pay for assistive technology for EI kids.

However, everytime we called (before we found this clause) they told us that

they wouldn't cover the aides. So we bought them and now they are saying we

were supposed to have preauthorization. Little stinkers! It irks me, but

what can I do? So...anyways, I just wanted to say (while blabbering all of

our other issues related to Tessa's Hearing impairment), thanks a lot for

your help. All input is appreciated. And though I would wish this road on

no one, it's nice to know someone's been there before me.

On another note, for all who are interested, there is a website called

caringbride.com that allows you to journal, put up photos, and have a

guestbook for your child...it makes updating family members much easier in

regards to your child's hearing loss. Here is Tessa's page....

www.caringbridge.org/va/tessasears

Check it out if you'd like.

Sara

Tessa 21 mo.

[Guest guest]

In a message dated 6/25/2004 2:12:43 PM Pacific Standard Time,

snobordnwifey@... writes:

<<Her special ed teacher thinks

that she has sensory issues and suggested that we put her on a " sensory

diet " meaning that we help her get that sensory stimulation she needs.

Anyone else have problems with this?>>

Most of the deaf kids I know have problems with this to varying degrees.

Neal has lots of sensory integration issues. And no, it's not part of a any

syndrome that I have ever come across. Neal attends a sensory clinic through

our

insurance and also has an OT through the district who, while she mostly works

with him on fine motor stuff, used to work in a sensory clinic and knows about

the issues and can offer advice. A sensory diet is a great idea, but you

need help understanding what your child needs in that diet. More than likely

brushing will help. That is the first thing most sensory OT's prescribe, but

you

want to have your child evaluated by someone who knows about sensory

integration before you start anything on your own. Not that brushing will hurt

any

child, but it's still something you want an educated opinion on. So, to make a

long story short. What you need is an evaluation by an occupational therapist

trained in sensory integration issues. Ask your EI people about it, but they

probably won't have anyone. Ask you insurance about it too. If you still

haven't found someone, I would ask parents of other deaf kids in your area if

they

have found anyone, or call around to OT's and see if one of them knows someone.

~Rhonda~

Mom to Audrey, 7, hearing & Neal, 4, CII 6-11-02

[Guest guest]

In a message dated 6/25/2004 2:12:43 PM Pacific Standard Time,

snobordnwifey@... writes:

<<Her special ed teacher thinks

that she has sensory issues and suggested that we put her on a " sensory

diet " meaning that we help her get that sensory stimulation she needs.

Anyone else have problems with this?>>

Most of the deaf kids I know have problems with this to varying degrees.

Neal has lots of sensory integration issues. And no, it's not part of a any

syndrome that I have ever come across. Neal attends a sensory clinic through

our

insurance and also has an OT through the district who, while she mostly works

with him on fine motor stuff, used to work in a sensory clinic and knows about

the issues and can offer advice. A sensory diet is a great idea, but you

need help understanding what your child needs in that diet. More than likely

brushing will help. That is the first thing most sensory OT's prescribe, but

you

want to have your child evaluated by someone who knows about sensory

integration before you start anything on your own. Not that brushing will hurt

any

child, but it's still something you want an educated opinion on. So, to make a

long story short. What you need is an evaluation by an occupational therapist

trained in sensory integration issues. Ask your EI people about it, but they

probably won't have anyone. Ask you insurance about it too. If you still

haven't found someone, I would ask parents of other deaf kids in your area if

they

have found anyone, or call around to OT's and see if one of them knows someone.

~Rhonda~

Mom to Audrey, 7, hearing & Neal, 4, CII 6-11-02

[Guest guest]

In a message dated 6/25/2004 9:17:55 PM Pacific Standard Time,

snobordnwifey@... writes:

<<I think I will try to push the

EI people a little harder. I think part of their problem is that Tessa will

be going to an IEP in September b/c she is going to a preschool for

HI/Language delayed children. So, I think they just don't want to give us

the services for 3 months...however, 3 months is a long time in terms of a

21 mo old.>>

Another thing to think about in my opinion is that when you switch over to an

IEP, things you were already receiving while under EI will be easier to

justify keeping. I made a point of having Neal placed at his current oral deaf

school by the EI people, even though he only had his implant a few months before

he would be changing over to an IEP, and those months were summer months. I

got him placed there three days a week and got my gas mileage reimbursed. Then

when we went to his IEP meeting that was on record and my asking for him to

be placed there full time in the preschool program when he was three just made

sense. I can't prove it helped, but it certainly didn't hurt. I never ( so

far) had to fight my district over placement, and many do when asking for

placement in a private oral-deaf school.

~Rhonda~

Mom to Audrey, 7, hearing & Neal, 4, CII 6-11-02

[Guest guest]

> ...I think part of their problem is that Tessa will

> be going to an IEP in September b/c she is going to a preschool

for

> HI/Language delayed children. So, I think they just don't want to

give us

> the services for 3 months...however, 3 months is a long time in

terms of a

> 21 mo old. I'm very irritated with them at times. They just don't

seem to

> have the time, sometimes. But, that's another story.

Sara,

It really sounds like you have the fighting spirit, so I know in the

end Tessa will be OK!! You will persevere in all this!

I am thinking back to 's early intervention days in California

(we live in Massachusetts now) and I seem to remember that the

services were always cut in the summer because the teacher of the

deaf and speech and language pathologist worked on a school year

calendar. As you say, this makes no sense when you are talking

about a toddler/preschooler learning speech and language.

Have you heard of the Clinic? They are in Los Angeles,

but do correspondence courses with parents all over the world.

Their focus is oral. They will send you videotapes and lesson plans

and assign a teacher to you with whom you can communicate via

letters or email. It can be very helpful! They also have a summer

program at the clinic that a lot of people travel to. Visit

http://www.jtc.org for more info. (P.S. Kay -- I found out about

them from the Listen-Up web site 6 years ago! Thanks!)

With that said, I have to say that I found it hard to keep up with

the JTC correspondence because, at the time, we were also learning

sign language, and it felt like we were doing too much at once.

(Now, post implant and lots of hard work, is totally oral.)

BUT, it can be very useful. Also, I am NOT suggesting it as a cop-

out to fighting with your EI team. It is a useful supplement, and

can also help clarify what Tessa deserves in terms of services from

your school district.

Good luck!

Lydia

Mom of , almost 7 1/2, HAs at age 1, cochlear implant at age 4