Re: Need help

October 11, 2004

Corpus callosotomy is supposed to prevent drop seizures...I thought...that's

what my neuro said. He told me if we did the CC on Jake then the drops

would be prevented because the brain would be unable to seize that way (for

a very basic, lack of better words explanation here....

Is you child now having drops SINCE the CC? That's concerning. In our

case, Keppra helps very much w/ the drops.

Barb Swoyer, Jake's mom

need help

>

> has anyone else had a corpus callosodomy done on there child and if

> so did your child start to have drop seizures after and what meds

> did the doctors give that helped with this? or if your child has had

> drop siezures what meds helped with it needing to knoe?

>

> Carol Casey's mom

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

October 11, 2004

Corpus callosotomy is supposed to prevent drop seizures...I thought...that's

what my neuro said. He told me if we did the CC on Jake then the drops

would be prevented because the brain would be unable to seize that way (for

a very basic, lack of better words explanation here....

Is you child now having drops SINCE the CC? That's concerning. In our

case, Keppra helps very much w/ the drops.

Barb Swoyer, Jake's mom

need help

>

> has anyone else had a corpus callosodomy done on there child and if

> so did your child start to have drop seizures after and what meds

> did the doctors give that helped with this? or if your child has had

> drop siezures what meds helped with it needing to knoe?

>

> Carol Casey's mom

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

October 11, 2004

Corpus callosotomy is supposed to prevent drop seizures...I thought...that's

what my neuro said. He told me if we did the CC on Jake then the drops

would be prevented because the brain would be unable to seize that way (for

a very basic, lack of better words explanation here....

Is you child now having drops SINCE the CC? That's concerning. In our

case, Keppra helps very much w/ the drops.

Barb Swoyer, Jake's mom

need help

>

> has anyone else had a corpus callosodomy done on there child and if

> so did your child start to have drop seizures after and what meds

> did the doctors give that helped with this? or if your child has had

> drop siezures what meds helped with it needing to knoe?

>

> Carol Casey's mom

>

> " The Ketogenic Diet....a realistic treatment option, NOT just a last

resort! "

>

> List is for parent to parent support only.

> It is important to get medical advice from a professional

keto team!

> Subscribe: ketogenic-subscribe

> Unsubscribe: ketogenic-unsubscribe

>

August 9, 2006

In a message dated 8/9/2006 11:56:22 A.M. Eastern Standard Time,

saraandchadd@... writes:

For one, I am having mixed emotions about " forcing " him to be oral.

Is that what this school would be doing? Is it really necessary to

have him fully immersed at such a young age? And suppose it doesn't

turn out to be the best choice for him? Suppose he NEEDS the sign

to communicate? Suppose he never learns to talk? And then here I am

sending him to an oral school that wouldn't be the best environment

for him?

My first thought when reading this was: Language immersion can be either

verbal or visual. One is not less than the other, they are simply different and

can be used together as well, very successfully. Immersing your son in visual

language will also stimulate his brain's language center. Words are just

oral/aural symbols for a concept. A sign is a visual symbol for a concept as

well. Both ways will get language into your son and enable him to communicate,

which is the goal.

I'm not trying to push you towards a visual approach, it's just that it

sounds to me like you are leaning that way since the oral doesn't seem to be

working and are wondering if it is as valid an approach.

It is. And not all kids are oral. Some very deaf kids are oral

communicators, some moderate loss kids are visual. It really does depend on the

kid. The

world is an oral place, so I think people have a tendency to think it is the

only choice. I personally like combining speech and sign, more total

communication than oral-only.

If this were me and I saw no oral/speech improvements coming, I'd start

using basic signs at home at the same time as I said the words. A pidgin

combination of ASL signs accompanying the spoken English. See if he picks up

the

signs.

Given the right stimulus, he will show you the way he needs to learn.

Personally, I'd be doing the pidgin + spoken and see if he takes to it. That's

how

I've always handled things with Ian -- try a little and set myself a time

line to evaluate how it's going. Then I adjust when I see what works and what

doesn't.

If there is an auditory processing issue then the signing skips past that.

Our Ian has both auditory and visual processing issues, aside from the hearing

loss. And, like you, the syndrome the doctors identified does explain some

things. To be brutally honest, it does not

adequately explain his progressive loss. Goldenhar has hearing loss as an

element, but it is discussed as a stable loss. For Ian, whatever physical damage

was caused by the syndrome was done during the 6th week of gestation. For

my understanding, a progressive loss just doesn't fit. (Otoschlerosis is a

much more logical diagnosis and one of the several we've received over the

years.)

So like you, we have a syndrome identified but there is also a little

collection of things that aren't explained by that diagnosis. Rather than

having

Ian continue to be a lab rat until there's another diagnosis, we've taken what

we know and we moved forward with that information.

You're still collecting your information, and you've found it doesn't quite

fit into a neat package. Go with what you know ... oral seems to be not

working (yet). Perhaps signing will give his brain a bit of a jump start to make

the connection between the concept and the sign/spoken word.

Little guys know basic ideas like " more " and " all done " and " apple " and

" juice " and " milk " and " cookie " ... so I'd start with that kind of stuff. Use

signs for the things he knows and likes: a stuffed bear (my son had a pig, my

daughter had a cat), truck, car ... simple signs for those things. I'd start

with the signs for known objects and then add in simple supporting words like

" want " and " like. " " Want milk " " like cat " could be simple sentences once the

concrete sign has meaning for him.

So, give him language any way you can. You've done the oral for a while, so

try adding in some visual and see if he takes to it. There is no harm in

trying. Yes, he is at the sponge stage and you want a solution as fast as

possible since everyone stresses how important this age is. But you can't know

everything right away, you're still learning how he learns. Give yourself

permission to try some things and take a little time in finding HIS answer.

Then you

do everything you can to support that. Parents here have mentioned signs

spurring the understanding of speech. Language is a very fluid thing, kids soak

it up any way they can.

And yes, what you do at home is very important. So, if you go the visual

route, you'll need to learn to sign. As a little-old-lady learning ASL, I can

say it was a little hard at first, but it gets easier. If he takes to the

visual, then you can make a choice of using ASL or SEE or Cueing or whatever ...

once you see if he takes to a visual process then you worry about which

signing modality to choose, so don't jump that gun just yet. Take it one little

step at a time.

You're doing fine ... none of this is easy and really is a lot of trial and

error.

I send you big hugs.

Best -- Jill.

August 9, 2006

Sara, with the moderate loss, he should be able to benefit greatly from the

oral school. The oral school will directly address auditory processing - that

is the very foundation of what they do. If it works for him and you/your

family, then that is what's right. No decision has to be permanent. If he

doesn't make progress over the next school year then you can try something else.

(Re forcing him to be oral: this would give him the CHANCE to be oral and

function in the hearing world. He will show you whether this is the right thing

for him or not) How long has he had hearing aids?? Is he adequately

amplified?? Does he wear his aids consistently? (I'm wondering because he

says hm hmmmm for thank you and kids say what they hear so perhaps he isn't

amplified well enough. He's saying the vowels but not the consonants.) All

those things could contribute to why he isn't talking, plus he is only 16 months

old. For some kids, it is " normal " for them to start talking at that age.

Didn't he just get his hearing aids recently?? When a child is first amplified

they are like a newborn in " hearing age " - they need to hear well for a while

until they start talking. In kids with typical hearing that takes a year, for

hard of hearing kids who get hearing aids it is usually quicker because they did

hear something prior to the amplification. In my experience, programs that do

both sign and oral don't usually address the auditory processing issues that all

hearing impaired kids have. The teachers do speak and sign though. A program

with sign would mean you and your family would need to become fluent in sign and

use it all the time at home in order for him to have the best that sign can

offer. You've had a lot to deal with, hurricanes, two kids diagnosis of

hearing loss and now the Klinefelters. So be gentle and kind with yourself.

-----

August 9, 2006

JillcWood@... wrote:

Yes, he is at the sponge stage and you want a solution as fast as

possible since everyone stresses how important this age is. But you can't know

everything right away, you're still learning how he learns.

I think this is my problem. I feel so rushed to make an adequate decision

NOW. I guess it doesn't help that I feel like I lost out on precious time with

Hannah at this age. The problem is is that he isn't doing either sign or

speaking. He'll imitate a sign but he doesn't use it. I know its unrealisitic

to expect much from him but I'm getting anxious that the " gap " will close on us.

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August 9, 2006

Ok so I attempt my 2 cents AFTER and Jill. humm probably not

worth much! But seeing they took opposites on this- here it goes.

I think that 16 mo even with or without hearing loss he may not be

talking yet. My 2yro hears just fine (sometimes too well when it comes

to the ice cream truck 6 blocks away ), at her 2yro well child

check up she didn't say 20 words. Now at 2y3mo she says lots and her

vocabulary increases nearly daily. I began to wonder about her hearing

around 2, the ped asked me if I thought she could hear- and I replied

yes, she said wait it out 6mo and if she doesn't have a language

explosion we'll have her expressive language checked. Well 3 mo later

she's talking lots!

So I'm not telling you that to brag by any means, I'm just saying that

16mo is still young- and even younger if he's just recently been aided.

I agree with about making sure he's amplified enough. I also

agree with Jill that Oral isn't for all HOH kids, my personal feeling

would be to attempt Oral because we live in a hearing world. If that

doesn't work out after a year maybe 18mo you don't see improvement then

by all means try something else.

Ok that's all of my 2 cents, hope it helps a little!

-Robin

Memphis Mommy

Constance 6.5 not listening, Breanna HL, toe walking, possibly AN,

is 2

Need help

So this might get long...

As ya'll may remember (or not) my youngest was recently diagnosed

with Klinefelter's syndrome. Although it has auditory processing

delays with it it does not account for his moderate hearing loss.

He is still not speaking (16 months) although he has finally started

to make innotations (ex - hm hmmmm for thank you). I'm trying to

decide what the best route will be for his developement. This isn't

about one vs. the other. Its more about trying to sort through my

feelings about it and seeing if anyone can help.

Right now he is meeting with the lady who runs a local deaf/hoh

school for children through the state Early Intervention program.

The school that she runs focuses on both sign and oral

communication. At first I was thinking this was the best route for

him. After all if he does have auditory processing delays than that

will only hinder his speach even more. But I'm begining to second

guess myself.

There is the other option of a strictly oral school. There was

recently a great write up about it in the paper and what makes it

even better is that it is right across the street from my daughter's

school and they go up to 6 years old. But I have a few concerns

about that and this is where I need help:

For one, I am having mixed emotions about " forcing " him to be oral.

Is that what this school would be doing? Is it really necessary to

have him fully immersed at such a young age? And suppose it doesn't

turn out to be the best choice for him? Suppose he NEEDS the sign

to communicate? Suppose he never learns to talk? And then here I am

sending him to an oral school that wouldn't be the best environment

for him?

I've talked to several people (recently found another program in the

area!) and they tell me that the most important thing is what we do

at home. That all the hours of therapy won't make a difference if

we don't work with him at home. Well - then I have a problem. I'm

still stuck on the same 3 signs!

I don't know - I just feel like I " m not doing enough for him? Do

you ever feel that way? Will it be horrible to place him in the oral

school even though one of the big positives is that it is so close?

g thinking this out.

August 9, 2006

I don't have any answers for you . It is difficult to attempt to

learn everything you need to know to figure out what is best for your

kids and then to advocate for them. I just encourage you to take

's advice, and be kind to yourself. The window for language is

not that small (up until age 6?), so you do have some opportunities to

correct and redirect, if the choices you make don't seem to work out.

I think most families here have made changes and modified their plan

as they went along, according to the results. I know that I have had

to learn to be both patient and flexible in dealing with all the

aspects of my sons hearing loss. (okay, so I am still working at the

patience thing!)

It sort of seems like oral might be a good first choice for your

family, if your entire family is not prepared/able to commit to

developing fluency at sign language. It just seems like if that is

your primary mode of communication, then your son's support system

will be much better if you go the oral route.

Perhaps in the next few weeks, spend as much time as you can observing

in both programs. Then just go with your instincts, knowing that you

can change directions if your son shows you that he is not progressing.

Just a few thoughts. Hugs and empathy from Seatle.

Tracey

August 9, 2006

Hi Sara - everyone's had such great words for you. Have you visited

both schools? If you haven't, I would just to get a feel for where you

think he'd be the happiest and where you'd be most comfortable. also, I

agree with Memphis Robin that 16 months is very young and so it's

possible he's just developmentally not ready to talk yet. it's probably

hard too because your basis of comparison is his older sister - I think

girls probably talk younger than boys do.

Hugs to you, sweetie!

Barbara

saraandchadd wrote:

> So this might get long...

>

> As ya'll may remember (or not) my youngest was recently diagnosed

> with Klinefelter's syndrome. Although it has auditory processing

> delays with it it does not account for his moderate hearing loss.

> He is still not speaking (16 months) although he has finally started

> to make innotations (ex - hm hmmmm for thank you). I'm trying to

> decide what the best route will be for his developement. This isn't

> about one vs. the other. Its more about trying to sort through my

> feelings about it and seeing if anyone can help.

>

> Right now he is meeting with the lady who runs a local deaf/hoh

> school for children through the state Early Intervention program.

> The school that she runs focuses on both sign and oral

> communication. At first I was thinking this was the best route for

> him. After all if he does have auditory processing delays than that

> will only hinder his speach even more. But I'm begining to second

> guess myself.

>

> There is the other option of a strictly oral school. There was

> recently a great write up about it in the paper and what makes it

> even better is that it is right across the street from my daughter's

> school and they go up to 6 years old. But I have a few concerns

> about that and this is where I need help:

>

> For one, I am having mixed emotions about " forcing " him to be oral.

> Is that what this school would be doing? Is it really necessary to

> have him fully immersed at such a young age? And suppose it doesn't

> turn out to be the best choice for him? Suppose he NEEDS the sign

> to communicate? Suppose he never learns to talk? And then here I am

> sending him to an oral school that wouldn't be the best environment

> for him?

>

> I've talked to several people (recently found another program in the

> area!) and they tell me that the most important thing is what we do

> at home. That all the hours of therapy won't make a difference if

> we don't work with him at home. Well - then I have a problem. I'm

> still stuck on the same 3 signs!

>

> I don't know - I just feel like I " m not doing enough for him? Do

> you ever feel that way? Will it be horrible to place him in the oral

> school even though one of the big positives is that it is so close?

>

> g thinking this out.

>

> 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.

>

August 9, 2006

Barbara Mellert Barbara.T.Mellert@...> wrote: it's probably

hard too because your basis of comparison is his older sister - I think

girls probably talk younger than boys do.

It isn't so much " talking " - but he doesn't even imitate sound. Should he be

doing that now? Like I said - he has finally started the innotations which I

feel is the next step developmentally for him - but if I say " banana " should he

at least attempt " bana " or even " ba " ? He doesn't even do that.

And yes - saying my daughter talks is an understatement - she is never NOT

talking. She even talks in her sleep!

---------------------------------

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August 9, 2006

Did he babble as a baby?? Is he totally quiet or does he make animal and car

noises etc while he plays??

August 9, 2006

At 16 months- ma or mama, da or dada, bye, hi, possibly a word for milk

like moo or ook, and possibly the famous NO. I don't think at 16 mo he

would imitate banana- which I know was just an example. I'm only going

on my most recent memory of my now 2yro for ideas.

-Robin

Memphis mommy

Constance 6.5y, Bree 3y, is 2y

It isn't so much " talking " - but he doesn't even imitate sound. Should

he be doing that now? Like I said - he has finally started the

innotations which I feel is the next step developmentally for him - but

if I say " banana " should he at least attempt " bana " or even " ba " ? He

doesn't even do that.

And yes - saying my daughter talks is an understatement - she is never

NOT talking. She even talks in her sleep!

---------------------------------

Stay in the know. Pulse on the new Yahoo.com. Check it out.

August 9, 2006

No he didn't really babble. He just started making a roaring noise when I do it

first. Its just that he never initiates sound.

pcknott@... wrote: Did he babble as a baby?? Is he totally quiet or

does he make animal and car noises etc while he plays??

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.

August 9, 2006

No he didn't really babble. He just started making a roaring noise when I do it

first. Its just that he never initiates sound.

pcknott@... wrote: Did he babble as a baby?? Is he totally quiet or

does he make animal and car noises etc while he plays??

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.

August 9, 2006

No he didn't really babble. He just started making a roaring noise when I do it

first. Its just that he never initiates sound.

pcknott@... wrote: Did he babble as a baby?? Is he totally quiet or

does he make animal and car noises etc while he plays??

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.

August 9, 2006

Sara, if this school is oral and sign, can't you have him in that

school and when he gets older, strictly focus on him being oral if

that is what you want, but at 16 months - use the sign as a bridge

to his learning how to speak is something to consider. I am not sure

if the Dehahns are still on the list, (and Martha) but I

believed they used sign with their two deaf kids when they were

babies, then went to an oral school. I also know of a mom who

signed with her baby, then around 3 years old he has an implant, and

he does well with both english and sign, but he was immersed early.

Secondly I dont' understand this -

" After all if he does have auditory processing delays than that

> will only hinder his speach even more.

Are you saying the auditory processing delays will hinder the

speech?

Whatever communication you can establish with him, in my opinion, is

the best option. I think yesterday I wrote to a mom and said, if

you end up not thinking your son is making progress after a few

months, you can move him to the other school. Maybe you have that

option too?

I just feel like I " m not doing enough for him? Do

> you ever feel that way? Will it be horrible to place him in the

oral

> school even though one of the big positives is that it is so

close?

>

Ithink you are doing everything possible for your son and I feel

your anguish over this decision. I think we all feel that we are

not doing enough for our kids. You are not alone with that one!

And one last thing, I would take the closeness out of the occasion.

Pretend both schools are 20 miles away and then pick. I say this,

because we have a good program near us for DHH kids, but I send my

daughter to a school for the deaf school because I wanted that for

her and thought it was the best option for her. She is 14 now and

starting her 3rd year at WPSD.

Good luck

mary

August 9, 2006