RE: Cochlear Implants

January 10, 2006

Pat,

Charge kids seem to have a wide variety of responses to cochlear

implants, some very good and others very poor. Our first implant did not work at

all.

We tried for 4 years with all the specialists to get it working for Bryce and

then we finally re-implanted and are having pretty good responses. 2 thoughts-

The sooner the kids can get implanted, the better. For Charge kids that

involves a lot of questions of medical readiness but the longer they live in a

silent world the harder it is to adapt to sound. Secondly, most of the Chargers,

even after implantation is successful seem to go on their own time table for

processing speech and for gaining intelligible speech themselves. I would get

frustrated when Bryce would get negatively compared to all the deaf kids

timetables. He is progressing along nicely albeit at his own rate of speed.

Despite our long and discouraging road for the first 5 years, we are

extremely thrilled that he can finally hear!!

Oh, and since Chargers are complicated on the implant scene, I would try

to find ENT' s and audiologists famililiar with Charge kids if possible. If

not I would insist they do their research.

Deedee., Mom to Bryce age 8

January 11, 2006

, Does she get special interventions for the auditory processing

issues. With the visual processing problems, a skilled interventionist

breaks the vision down into tiny components and figures out how well the

child does with each aspect of seeing (color, movement, distance,

complexity, visual-motor and so on). Then interventions are designed to

help move them from one level to another, basically teaching them to see.

That is why I care so much that Dylan actually had the CVI label added,

because then we could work on helping him improve his vision rather than

with the coloboma which I can't change so we just wait and see. It seems it

would be the same with auditory processing, but I have no experience there.

It really bothers me that because our kids have true auditory and ocular

problems that the brain based part is missed and that is the part we can try

to do something about.

If it helps here are some general principles for the visual processing that

I have substituted in hearing ideas. (It seems the same principles would

apply)

Focus on one sense at a time - if working on hearing, decrease visual

input. (Have you ever closed your eyes when trying to really hear something

or turned the radio off when driving in a storm so you could see better? If

so, imagine what it is like for our kids when they don't even have prior

knowledge of what they are seeing and hearing.)

Start simple - separating out competing sounds is hard, so keep the

background quiet

Start where they are at and build from there. If the only thing she

responds well to is the _______ use that to draw attention and then work on

________

With CVI we are reminded that the vision does not really change from

moment to moment, it is the environment that changes making it appear that

sometimes they see and sometimes they don't. Control the environment.

Focus on auditory development rather than auditory stimulation (help

them make sense of it and follow the cues to know when too much is too much)

Child directed

Give LOTS of time to respond (sometimes the response is so delayed that

we have moved on to the next sound/word whatever before they have had a

chance to respond to the first one; if this continues their brain will turn

that sense " off " to protect from too much confusing input.

I hope this helps.

Kim

> Will that change at some time for her?

January 11, 2006

Ok, Flo

Looking forward to hearing more from ye..

Pat

>

> Pat,

> is due to be implanted in March. No time right now as

Simon wants

> to hog the computer (it's that newsletter time again) but will

come back on

> this as not long since we underwent the assessment process.

>

> Flo

>

January 11, 2006

Hi ,

Thank you SO SO MUCH for your reply.

I'm gonna copy it in my computer to keep it!

I know CI will be a long and slow process.. but don't means justify

the end? I cannot think of anything I wouldn't do to improve Aidan's

condition! ..So I'm ready for the challenge!

And we had also already discussed with the audiologist about in

which ear putting the implant if both have not the same hearing

loss, and is exactly what you mentioned, in the " poor " ear would be

the best option.. But, anyway, that's jumping ahead too far now..

We'll see what next tests reveal..

And sure I'll keep you posted!

Pat

>

> Hi Pat,

>

> The CI has traditionally been done in one ear until recently,

but that's starting to change in some cases. We've had several kids

here at our Children's Hospital in Cincinnati, Ohio, this past year

receive double implants--one in each ear. I'm not sure what the

criteria for doing both ears is, though. In the past--and probably

still in most cases until they have more data on the success of

double implants--only one ear was implanted. They usually choose

the ear to implant by looking at things like cochlea structure,

position and integrity of the auditory nerve, as well as how much

hearing, if any, is in the ear. If one ear has better hearing than

the other, they usually opt for the ear with lesser hearing (if the

structure permits) for the CI, because once they put in the CI, it

destroys all hearing cells in that ear.

>

> The CI process can be fairly long. A whole team of people will

evaluate Aidan and screen the family--ENT, audiologist,

developmental pediatrician, social worker, etc. They look not only

at the child but at the family's feelings about getting the CI, the

types of supports and training they'll provide the child in the

home, etc. A CI is a long-term commitment, so they want to make

sure the whole family is on board. Some CI teams will try to force

you to take an all-oral approach with your child. Stand your ground

on that one--there's nothing detrimental about doing both sign and

speech with your child, it will give them access to language more

quickly.

>

> You'll find from hearing from other parents on the list that the

CI has varying rates of success in kids with CHARGE. Our daughter

has had her CI for 2 1/2 with minimal success. She can obviously

hear with it when it's on, but she has high sensory integration

issues coupled with tactile defensiveness around her head, so the

challenge with her lies with just getting her to keep the CI magnet

on her head consistently. It takes lots and lots of patience and

persistence. I also believe that has some processing issues

with the sounds--she hears them, but doesn't know how to process

them. Will that change at some time for her? Only time will tell.

Meanwhile, we don't regret having her get the CI--she obviously can

hear with it (something she could never do with hearing aids), and

even if it takes years for her to benefit from it, it will have been

worth the wait.

>

> Good luck in your choice for Aidan's CI, and keep us posted!

>

> , mom to (4 next week!)

>

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

> Yahoo! Photos

> Ring in the New Year with Photo Calendars. Add photos, events,

holidays, whatever.

>

January 12, 2006

Thanks for these tips, Kim--these are great! did do auditory training

with a therapist for the first couple of years. We saw very little results--but

I also think some of that was the therapist, both her methods and her

personality. I don't think she really understood 's needs and her

differences from a child who has only hearing loss, and so she didn't always

adapt her style to fit . Also, personality-wise, she was a very

opinionated woman who liked to spend the better part of a therapy session giving

her opinions about things like why we shouldn't be signing with , etc.

After a while, it got old, and I really didn't see (or us) getting any

benefits from her. I do think needs auditory training again, but it's a

matter of finding another therapist who will better suit her needs. We know of

only one other here, and she's a 90-minute round-trip drive and currently isn't

accepting new patients. I also don't know if the auditory training really

breaks things down far enough for , like the tips you gave. But I think

if we could find the right therapist who was willing to look at the bigger

picture, we could give her tips like this and work with her to better fit the

sessions to 's needs.

I do believe that the " one sense at a time " thing SO applies to ! We've

noticed that becoming more and more obvious, especially now that she's learning

to walk. If she has her CI magnet on and starts to take a step, she immediately

flips the magnet off. If she starts to eat something, the magnet comes off. If

she sits down to look at a book, the magnet comes off. You get the picture. I

think her biggest needs right now are to work on the sensory

integration/overstimulation/tactile defensiveness issues. Until she can learn

to modify those, I don't think we're going to see a lot of success with the

CI--it's coming on and off too much for her to get consistent use from it.

We're currently in the process of a two-part eval with a private OT place here

that specializes in sensory integration, and they think they can help her work

on some of these things. Hopefully, we'll see some good results. We start

sessions in a couple of weeks. And we really like the therapist so

far--she seems to take a big picture approach, asks a TON of questions to get a

good read on 's background and issues, and has been very good about giving

the time and space she needs to adapt to the therapy routine. Wish us

luck!

, mom to (4 next week!)

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

Yahoo! Photos

Got holiday prints? See all the ways to get quality prints in your hands ASAP.

January 12, 2006

-

Let us know how the SI therapy goes and what works for . I'm sure

there are lots of us here who could use some of what you learn with our own

kids. Aubrie had lots of SI therapy early on from her Early Intervention

OT. I think it helped because she's overcome most of her sensory

defensiveness. Of course, we never know if she's just outgrown it or

actually overcome it due to the therapy, but it seems to be that a bit of

both is probably accurate. And perhaps without the therapy she wouldn't

have been able to outgrow it.

That said, she still has lots of sensory issues. They are just more subtle

now. The neuropsych would like to see her get some more intensive SI

therapy again. Now OT at school is working soley on fine motor.

As with you, it's a matter of finding the right person for the job and

managing to fit it into our schedule.

Good luck with things. It sounds like you have a good handle on what is

working for , how she processes things, and what she needs some help

with.

Michele W

Aubrie's mom 8 yrs

January 12, 2006

I'll keep you posted, Michele. We probably should have done more intensive

OT/SI therapy a long time ago with . With all the other therapies, appts,

etc., we never seemed to fit it in. And I guess I never realized how integrated

OT and SI are until we filled out the SI inventory for a few weeks ago.

Practically every statement fit her to a " T " --it was like they wrote the whole

inventory about HER! Wow, was that an eye-opener. I guess I'd always thought

OT was all about fine motor, which really does well with. Live and learn,

I guess. I hope the therapy and the years ahead help outgrow most of her

SI issues too. Right now, they seem to be getting worse and worse and really

get in the way of her learning and even basic everyday activities.

, mom to (4 next week!)

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

Yahoo! Photos

Got holiday prints? See all the ways to get quality prints in your hands ASAP.

January 12, 2006

-

That's the way it goes for us -- we focus on what is critical at the time

but miss the background issues -- until they creep up to the forefront.

There are simply too many issues in CHARGE to adequately deal with all of

them at once. Like Tim said -- it's a real struggle to figure out what is

worth spending time on and pursuing and how to balance all that with just

" being " . If we did everything our kids need right now, they'd never have

time to just be a kid. I find these struggles to be very difficult. But I

have tried to let go of the guilt when I realized that I've missed something

or let something go.

Michele W

Aubrie's mom

January 12, 2006

,

Who did you see in the audiology department? I can't believe they told you not

to use sign language! They have always integrated sign langueage into her

therapy sessions. has listening therapy throught the audiology program

at Children's Outpatient Fairfield, but we have discontued for now because of

Preschool and she will only be doing this in the Summer. I am just curious...as

to who this could be?

She also has an OT whom I feel is awsome when it comes to dealing with the

sensory integration issues. Her name is Gerdes and her PT is Victor

Voegele. I won't mention the Audiology therapist until you tell me who you seen

first!

n-mom to 3 yrs. old CHARGE and her 3 siblings and wife to Lester

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

Yahoo! Photos – Showcase holiday pictures in hardcover

Photo Books. You design it and we’ll bind it!

January 13, 2006

,

Luck duly sent your way for the OT sessions. Like Michele re Aubrie,

too has benefited greatly from a sensory integration approach with

OT and has largely overcome her sensory defensiveness. She too now is

largely focussed on pre-writing skills with some sensory stuff such as

fiddle bags and boxes thrown in for good measure. She loves these and I

can't believe it has taken me so long to recognise and capitalise on them

for keeping her occupied for various things (eg platting or combing hair

without tears). Guess we cannot be attentive to every issue at all times

and it is only when the more crucial ones are out of the way that we pay

attention to the quality of life ones.

Please let us know how the SI with the OT stuff goes. Would love to know

too.

Flo (who having sent the age 5 b'day message now notes is 4. Happy

4th birth day anyway to !)

>

> I do believe that the " one sense at a time " thing SO applies to

> ! ....... Until she can learn to modify those, I don't think we're

> going to see a lot of success with the CI--it's coming on and off too much

> for her to get consistent use from it. We're currently in the process of a

> two-part eval with a private OT place here that specializes in sensory

> integration, and they think they can help her work on some of these

> things. Hopefully, we'll see some good results. We start sessions in a

> couple of weeks. And we really like the therapist so

> far--she seems to take a big picture approach, asks a TON of questions to

> get a good read on 's background and issues, and has been very good

> about giving the time and space she needs to adapt to the therapy

> routine. Wish us luck!

>

> , mom to (4 next week!)

>

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

> Yahoo! Photos

> Got holiday prints? See all the ways to get quality prints in your hands

> ASAP.

>

January 13, 2006

- If there was one message that I heard in EVERY session at the last

CHARGE conference was " one sense at a time " and all the presentations were

on different topics and professionals from different fields "

I think how hard it must be for our kids who are in a regular class with all

that input and am amazed that they learn anything, not because I doubt their

cognition, but the work it takes to put it all together.

Kim

> Thanks for these tips, Kim--these are great! did do auditory training

> with a therapist for the first couple of years. We saw very little

> results--but I also think some of that was the therapist, both her methods and

> her personality. I don't think she really understood 's needs and her

> differences from a child who has only hearing loss, and so she didn't always

> adapt her style to fit . Also, personality-wise, she was a very

> opinionated woman who liked to spend the better part of a therapy session

> giving her opinions about things like why we shouldn't be signing with ,

> etc. After a while, it got old, and I really didn't see (or us) getting

> any benefits from her. I do think needs auditory training again, but

> it's a matter of finding another therapist who will better suit her needs. We

> know of only one other here, and she's a 90-minute round-trip drive and

> currently isn't accepting new patients. I also don't know if the auditory

> training really

> breaks things down far enough for , like the tips you gave. But I think

> if we could find the right therapist who was willing to look at the bigger

> picture, we could give her tips like this and work with her to better fit the

> sessions to 's needs.

>

> I do believe that the " one sense at a time " thing SO applies to !

> We've noticed that becoming more and more obvious, especially now that she's

> learning to walk. If she has her CI magnet on and starts to take a step, she

> immediately flips the magnet off. If she starts to eat something, the magnet

> comes off. If she sits down to look at a book, the magnet comes off. You get

> the picture. I think her biggest needs right now are to work on the sensory

> integration/overstimulation/tactile defensiveness issues. Until she can learn

> to modify those, I don't think we're going to see a lot of success with the

> CI--it's coming on and off too much for her to get consistent use from it.

> We're currently in the process of a two-part eval with a private OT place here

> that specializes in sensory integration, and they think they can help her work

> on some of these things. Hopefully, we'll see some good results. We start

> sessions in a couple of weeks. And we really like the therapist so

> far--she seems to take a big picture approach, asks a TON of questions to get

> a good read on 's background and issues, and has been very good about

> giving the time and space she needs to adapt to the therapy routine.

> Wish us luck!

>

> , mom to (4 next week!)

>

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

> Yahoo! Photos

> Got holiday prints? See all the ways to get quality prints in your hands

> ASAP.

>

January 14, 2006

n,

We probably saw the same person for listening therapy as you if you're going

to Fairfield--Jody Creighton? We really liked Jody at first, before got

her implant. She was fine with signing then. But she's a big proponent of the

oral approach once kids get a CI. She made it known to us in many not-so-subtle

ways that she didn't think we should be signing with her. I also ran into her

at a workshop a couple months ago at Children's, and she asked where was

going to school. When I told her is in an inclusion program at Mason

preschool with a one-one-one aide and that they're doing total communication

with her, all she said was " Oh. " in this kind of deragatory tone. Even our

developmental ped jumped in and defended our decision (she's also part of the CI

team at Children's). So for , since she doesn't have a CI, Jody may be

fine, but here's a forewarning that if she gets a CI, Jody won't be all that

open-minded about it.

Is 's OT through Children's? Is it at the base or at Fairfield?

We're currently starting up at COTI (Cincinnati Occupational Therapy Institute)

in Blue Ash. They were recommended to us by 's developmental ped and

pediatric psych as being good with sensory integration issues.

, mom to (4 next week)

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

Yahoo! Photos – Showcase holiday pictures in hardcover

Photo Books. You design it and we’ll bind it!

January 14, 2006

,

Your right it is Jody. So far we haven't had any problems with her, but I can

see where you would have a problem. She strikes me as the type of person who is

very strong ,opinionated person and I can see where you would clash if you

didn't neccesarily agree with her. I will have to keep this in mind, when we

start back up in the summer.

Gerdes is 's O.T. at Children's Hospital and so far we have

gotten good results with the therapy. She incorporates alot of S.I. into the

session, she uses alot of the same type S.I. that you would use for an autistic

child, and it seems to be working out pretty good for the moment. I have to say

that we have gotten good results with and I can't say that for everybody

else that we have seen.

does have some issues though, and I would be interested in what your

new O.T. would have to say about this. does not tolerate wearing her

hearing aids for very long, maybe an hour and that is it. I also felt it was

sensory, but wasn't so sure until I heard you describe it. She also has pulled

out alot of her hair and now it is very short, we have to watch her with her

hair she sometimes just starts ripping it out and feels it in her hands or

sometimes she put it in her mouth, which is kind of interesting since she

doesn't eat food.

n-mom to 3yrs. CHARGE and her 3 siblings and wife to Lester

Kauffman wrote: