Re: glasses and hearing aids?

[Guest guest]

Bonnie,

I felt the same way when I found out about Bobby's hearing loss. I mean,

comeon, how much more can a kid take? Not to mention his mother. In a few

weeks, you'll probably get adjusted to the new diagnosis and get back to

thinking, " OK, it's only glasses, at least he's alive. " But the blow of yet one

more thing is a little much to bear, yet again.

I can't tell you about glasses and hearing aids. Bobby also has something wring

with his eyes, it's called something I can't pronounce (one more to add to the

list of unpronouncable terms) but when he looks directly up, his eyes go out to

the sides. Each one goes a different way. Oh joy, like he doesn't look

different enough. He used to do it just to see me freak, and then the audience

of the kids laughing didn't help, until I told him it wasn't funny. Wait till

he does that to one of his kindergarten friends!

I'm really sorry Elias has vision problems too. Just when the scans were over

and you thought you'd be sailing free for a while. Believe me, I know how that

goes...

Hugs,

Trish

glasses and hearing aids?

My son has moderate to severe bilateral loss which is corrected with behind

the ear aids. He is 4. His hearing loss

is due to high dose chemotherapy when he was 2 and treated for

neuroblastoma. We just got the bad news that

he also needs glasses. He was dx'ed with an astigmatism in both eyes. I

don't know if this might be related to

the chemo or not -I have to research that one. However, I have an immediate

practical question : how on earth

do we fit him with glasses when he is already wearing hearing aids? What are

the options? We will need something

that is going to work on a small, active boy.

I am not happy, to say the least. My son already has so much going against

him - constant doctor visits,

growth issues, hearing loss, low muscle tone, possible heart and lung

problems looming in the future.

He doesn't need this too.

--

Bonnie

[Guest guest]

Bonnie, I hear your pain - why one more thing??? Hugs to you as you face this

next hurdle. It really isn't fair for some kids to have to put up with so much,

not to mention their parents putting up and slogging through it with them.

Maggie started wearing glasses at about 7 in addition to her BTEs. It actually

wasn't too bad - juat made her ears stick out a little more. We found the metal

frames with an ear piece that was thin worked the best. Then at about 10 she

switched to contacts. She still wears glasses when the contacts are out because

she has pretty bad vision. She looked pretty bionic for a while with glasses,

hearing aids, FMs and braces!! She wasn't self conscious about anything but the

glasses until recently. Cyber hugs as you suck it up and deal with this as I

know you will!

[Guest guest]

Trish, does Bobby have amblyopia? I have that, and was not treated as a

child.

That is a bad thing, because it led to loss of vision in one eye. If that is

in

fact what Bobby has, you should consider treating it now, because you only

have a short window of time in which treatment is effective.

Bonnie

>

>

> I can't tell you about glasses and hearing aids. Bobby also has something

> wring with his eyes, it's called something I can't pronounce (one more to

> add to the list of unpronouncable terms) but when he looks directly up, his

> eyes go out to the sides. Each one goes a different way.

>

[Guest guest]

Dear Bonnie,

Sierra wore hearing aids and glasses when she was two years old. She currently

wears the body worn processor for her cochlear implant. We are waiting until

the new harmony (new bte for her CI) comes out then we are switching. It is

possible, just not always easy. Take care and God Bless.

Natasha~Mom to~

(8/25/97) Asthma

Sierra (11/28/00) Multiple Craniosynostosis, Crouzon's Syndrome,

Syndrome, Asthma, Trach, Tracheamalacia,

Bronchomalacia, Subglottic Stenosis, Chonal Stenosis,

FTT,GERD, G-tube & Nissan, Strabismus, Profound hearing loss,

CI implanted 8/19/04. Activated 9/7/04

Sierra's story: www.cappskids.org/CAPPSCranioKidSierra.htm

www.tracheostomy.com/trachkids/kids18/sierra.htm

www.Caringbridge.org/oh/sierra

glasses and hearing aids?

My son has moderate to severe bilateral loss which is corrected with behind

the ear aids. He is 4. His hearing loss

is due to high dose chemotherapy when he was 2 and treated for

neuroblastoma. We just got the bad news that

he also needs glasses. He was dx'ed with an astigmatism in both eyes. I

don't know if this might be related to

the chemo or not -I have to research that one. However, I have an immediate

practical question : how on earth

do we fit him with glasses when he is already wearing hearing aids? What are

the options? We will need something

that is going to work on a small, active boy.

I am not happy, to say the least. My son already has so much going against

him - constant doctor visits,

growth issues, hearing loss, low muscle tone, possible heart and lung

problems looming in the future.

He doesn't need this too.

--

Bonnie

[Guest guest]

You scared me so much I just called the doctor to find out what it is. It's

esotropia. He said he just wants to watch the kind that Bobby has, because

it doesn't interfere with his vision at all, they only go apart when he

looks straight up with his eyes, which is not something you do naturally

anyway. We have to go back every 6 months, and his appt is on Friday, so

you betcha I'll be asking lots of wuestions at that one.

Oh, and just so you know you're not alone, I'm having one of those sucky big

time days too. I just came back form AV therapy with Bobby, where he could

not even remember the word " barn " . Couldn't remember that the word for a

baby dog was " puppy " though we had just gone over it a few minutes before,

nor the words, " bat, cave, banana " and on and on. I sat there fighting the

tears, though eventually after an hour of watching him struggle to remember

the slightest little thing, they overflowed my eyelids anyway. I was

hysterical by the time I got to the parking lot and sat in the car. They

now think he has a " recall " problem, and god only knows that means.

I am not in a good place. I think we both need a hug today. If comes

home and screams at thekids, I think I'll divorce him on the spot.

Trish

Re: glasses and hearing aids?

Trish, does Bobby have amblyopia? I have that, and was not treated as a

child.

That is a bad thing, because it led to loss of vision in one eye. If that is

in

fact what Bobby has, you should consider treating it now, because you only

have a short window of time in which treatment is effective.

Bonnie

[Guest guest]

Many hugs to both you and Bonnie and all the other mom's that are on

this list that are handling so much! Your knowledge and your

strength and your willingness to share all that you know is so

inspirational to me.

>

> You scared me so much I just called the doctor to find out what it

is. It's

> esotropia. He said he just wants to watch the kind that Bobby

has, because

> it doesn't interfere with his vision at all, they only go apart

when he

> looks straight up with his eyes, which is not something you do

naturally

> anyway. We have to go back every 6 months, and his appt is on

Friday, so

> you betcha I'll be asking lots of wuestions at that one.

>

> Oh, and just so you know you're not alone, I'm having one of those

sucky big

> time days too. I just came back form AV therapy with Bobby, where

he could

> not even remember the word " barn " . Couldn't remember that the

word for a

> baby dog was " puppy " though we had just gone over it a few minutes

before,

> nor the words, " bat, cave, banana " and on and on. I sat there

fighting the

> tears, though eventually after an hour of watching him struggle to

remember

> the slightest little thing, they overflowed my eyelids anyway. I

was

> hysterical by the time I got to the parking lot and sat in the

car. They

> now think he has a " recall " problem, and god only knows that means.

>

> I am not in a good place. I think we both need a hug today. If

comes

> home and screams at thekids, I think I'll divorce him on the spot.

>

> Trish

> Re: glasses and hearing aids?

>

>

> Trish, does Bobby have amblyopia? I have that, and was not treated

as a

> child.

> That is a bad thing, because it led to loss of vision in one eye.

If that is

> in

> fact what Bobby has, you should consider treating it now, because

you only

> have a short window of time in which treatment is effective.

>

> Bonnie

>

[Guest guest]

Emylie,

You don't know how much I needed to hear that today. Well, then again,

maybe you did.

Thank you,

Trish

Many hugs to both you and Bonnie and all the other mom's that are on

this list that are handling so much! Your knowledge and your

strength and your willingness to share all that you know is so

inspirational to me.

[Guest guest]

Sorry, Trish, I didn't mean to scare you!

The next time you go to AV therapy, could you ask your therapist if he/she

knows

of any place in Westchester County that does this? I've looked on the AV

website,

but I can't really find anything - just some names of individual therapists

with

no contact information.

Are you sure that Bobby wasn't just being uncooperative, or tired? Elias

does

that a lot. He hates to " work " at anything, and will give the wrong answer,

or

claim he doesn't know, just to get out of a task. I am convinced that

laziness

will be his biggest downfall. Are there " anti-laziness " therapists out

there?

Bonnie

[Guest guest]

Hi Bonnie

I called our audiologist before Hayley had her glasses fitting. She

suggested we get a " light " pair like aluminum ish material. Candies

makes a lot of nice styles. I know you have a son, but many of the

styles can be girls or boys. I would just make sure has the aids on

when he's fitted for the glasses, and find a " light " pair.

You guys have been thru enough - I'll keep you in my thoughts!

mary

.. We just got the bad news that

> he also needs glasses. He was dx'ed with an astigmatism in both

eyes. I

> don't know if this might be related to

> the chemo or not -I have to research that one. However, I have an

immediate

> practical question : how on earth

> do we fit him with glasses when he is already wearing hearing

aids? What are

> the options? We will need something

> that is going to work on a small, active boy.

>

> I am not happy, to say the least. My son already has so much going

against

> him - constant doctor visits,

> growth issues, hearing loss, low muscle tone, possible heart and

lung

> problems looming in the future.

> He doesn't need this too.

>

> --

> Bonnie

>

>

>

[Guest guest]

She still wears glasses when the contacts are out because she has

pretty bad vision. She looked pretty bionic for a while with glasses,

hearing aids, FMs and braces!! She wasn't self conscious about

anything but the glasses until recently.

Hayley is wearing glasses (though not all the time), braces, hearing

aid and CI and she felt the same way last week. Actually she doesn't

care about the HA and CI, it's the glasses and braces TOGETHER that

bug her. She has been wearing her glasses this week though, when she

reads. So I know how Maggie feels ... or Hayley knows how Maggie

feels

>

[Guest guest]

I just came back form AV therapy with Bobby, where he could

> not even remember the word " barn " . Couldn't remember that the

word for a

> baby dog was " puppy " though we had just gone over it a few minutes

before,

> nor the words, " bat, cave, banana " and on and on. I sat there

fighting the

> tears, though eventually after an hour of watching him struggle to

remember

> the slightest little thing, they overflowed my eyelids anyway. I

was

> hysterical by the time I got to the parking lot and sat in the

car. They

> now think he has a " recall " problem, and god only knows that means.

>

> I am not in a good place. I think we both need a hug today. If

comes

> home and screams at thekids, I think I'll divorce him on the spot.

>

Hi Trish

I don't think it's uncommon for kids with hearing loss to have old

recall problems or even processing delays. I'm sorry, I forgot how

old your son is. Is this the first time he's had a bad day at

therapy? If it is, then maybe see how next week goes.

> Trish

> Re: glasses and hearing aids?

>

>

> Trish, does Bobby have amblyopia? I have that, and was not treated

as a

> child.

> That is a bad thing, because it led to loss of vision in one eye.

If that is

> in

> fact what Bobby has, you should consider treating it now, because

you only

> have a short window of time in which treatment is effective.

>

> Bonnie

>

[Guest guest]

He's 6. I think I was the one who was having a bad day at therapy. You may

be right, I just did some of the exercises with him and he seemed to do much

better. Sigh. It's never easy, I'm always second guessing, wondering if I

did something wrong, if he understands me, does he hear me, did all that

anesthesia and bad days with such low oxygen finally fry his brain...I just

never know... Hopefully tomorrow will be better...

Trish

Hi Trish

I don't think it's uncommon for kids with hearing loss to have old

recall problems or even processing delays. I'm sorry, I forgot how

old your son is. Is this the first time he's had a bad day at

therapy? If it is, then maybe see how next week goes.

[Guest guest]

Bonnie wrote:

However, I have an immediate practical question : how on earth

do we fit him with glasses when he is already wearing hearing aids? What are

the options? We will need something

that is going to work on a small, active boy.

I am not happy, to say the least. My son already has so much going against

him - constant doctor visits, growth issues, hearing loss, low muscle tone,

possible heart and lung

problems looming in the future. He doesn't need this too.

**

Bonnie -

's currently wearing some Sponge Bob frames that work pretty well with

his BTE. He's got very tiny ears, so we were pretty concerned as well.

The one thing you'll want to look for are frames that have narrower

earpieces if you can possibly find them. The Nickolodeon line of frames

seems to work pretty well - we actually preferred 's Jimmy Neutron

frames that he had first gotten for the potential fit with his BTE, because

the earpieces were thinner than the ones he has now. They have " Magic

Metal " frames that are very flexible (key for boys!), and then they have

frames like 's which are just more flexible in the joint of the

eyeframe to the bows.

Hugs to you,

Kris

Mom to (8, Complete/Profound SNL, Left Ear) and Ethan (6, hearing)

[Guest guest]

Trish wrote:

I am not in a good place. I think we both need a hug today. If comes

home and screams at thekids, I think I'll divorce him on the spot.

**

Here you go, Trish:

<<<<<<<<< >>>>>>>>

Hope that helped. You (and Bonnie) are stronger women than I could ever

hope to be.

Kris

[Guest guest]

I cried more when I found out my son has vision problems than I did

when we found out he was deaf. I never noticed a problem (he was my

first) and couldn't believe the doc. He got glasses when he was 3 and

doesn't take them off! His morning routine is to grab his " ear and

glasses " as soon as possible. At first used the body worn

processor on his cochlear implant and the glasses weren't an issue. I

was just freaked out that he had to wear glasses and have a thing

stuck to his head! Now he wears a BTE and the glasses actually HELP

to keep it on his head! I thought the combo of the 2 would be

difficult, but it's great. He went from seeing at 20/70 and

qualifying for deaf/blind services at 4, to seeing 20/30 a year

later. I'm so sorry for all that you and your son have had to go

through. I pray that God will give you strenght and peace and

wonderfully bless your son and others through him.

[Guest guest]

Bonnie,

I too feel your pain about both HAs and glasses ... seems like the first

few years of our kids' lives all the doctors and dxs are just coming one

after another. My daughter Kate began wearing her HAs at 4months and

then her glasses at 2 1/2 years - she's 5 now. The HAs didn't phase me

as much as the glasses ... I cried all the way home from the

optometrist's - she has the most beautiful blue eyes which were now all

magnified. But here's the good news She never once tried to take

them off (something we had a HUGE problem with her HAs) so that

reinforced how much better she must have seen the world! and isn't that

what it's all about?! Also, we all adjusted to seeing her wear them

rather quickly, and let's face it ... a kid with glasses IS pretty darn

cute.

I remember posting questions here on Listen-Up too (almost 3 years ago,

yikes!) about how in the world all that hardware would fit behind my

little one's ears - I was sure some sophisticated set-up of critter-clips

or harnesses would be required, but most of these wise parents suggested

to just " do nothing " - and that's worked for us very well! She just

wears her BTEs/FMs with SafeNSound clipz and her glasses rest freely -

sometimes there are positioning issues, but a good pediatric optometrist

should be able to find a good frame (the flexible ones are a must at our

house) and fit it without any problem. We use the shop that's affiliated

with our Dr.'s office - they only do kids, but if that's not available

I'd call around and talk to different stores beforehand - you'll get a

feel for who would be willing to work with your child.

Now that we've mastered glasses and HAs, I'm just waiting for the braces

to start!

Good luck - hang in there ...

in CO - mom to:

(7.2) - hearing, 2nd grader

Kate (5.2) - mod/sev bi-lat, microcephally, going to the 5th day of

Kindergarten today!

[Guest guest]

Trish,

I wrote most of this the other day and saved it as a draft. Figured it was time

to send it when you reposted!

Boy I remember those days. We did one exercise where we made cards -some were

shaped like mittens, some like gloves. Then they were different colors. We'd

play the game like go fish - do you have a blue mitten and she'd give me a red

glove. I thought it would never click. She would get it down and the next day

we'd play the game and be back at square one. But kids with hearing loss do need

to hear a word more often than a typical child to be able to remember it.

Before Maggie did AV she had one word for a whole classification of things - ex

nipe was the word for knife, to cut, to open a package, butter, peanut butter,

jelly. Anything that had anything to do with any kind of knife or used a knife

or scissors was called nipe. It was hard for her to learn the other words for

all the things she called nipe. It was cemented in her brain that butter was

nipe and she didn't want to have to learn and use another word for it. She had

another weird classification that was " big white " - mostly it was churches with

steeples, but also the city auditorium, the main library, synagogues and the

kitchen stove for some unknown reason. When the school tested her vocab they

showed her a picture of a stove - she said " big white " - then mommy's, then hot,

then " my no touch " but had no idea it was called a stove. I felt terrible about

that one. She really had such huge holes in her vocabulary. My AV therapist

called it " swiss cheese " language. And it wasn't just vocabulary. We noticed

that she did better remembering chunks of language, or phrases, better than

single words. Her favorite book prior to dx was The Wheels On the Bus " So she

could say " wheels on the bus go round round " before she could point out the

individual words for the things in the pictures. So just keep pumping in the

language -pure repetition is the best way to do it and not to try too many new

things all at once. I found reading kids books to be the best for this - some

kids don't do well under pressure to remember or to perform. Maggie's behavior

was so volatile that if you tried to get her to say words she would do a few and

then try to pitch a hissy fit. With a book you can read it over and over and

older kids can be put in charge of reading aloud when you get tired!! After 5

or 10 reads of a book I'd get Maggie to " read " it to me. Or she would get to a

page she would really like and say " that my doggy " or something and we'd go from

there and talk more about the doggy - was it big or little, black or brown,

mommy dog or baby puppy. Took the pressure off and it would help me see if the

vocab was sinking in or not. I enlisted the children's librarian to help me

with books that would be good on different types of vocabulary. I'd go see her

after AV and she'd help me get books that had to do with our theme for the week.

There are lots of books that have mommy daddy animals and babies and give the

names for each. Or books about farm animals would have lots of animal names and

barns and tractors etc. Or books about different actions/verbs. At the

beginning we were reading books that were used for one-two year olds and Maggie

was 4. And in the beginning it would take most of the week before a lot of the

vocabulary would seem to soak in. I think sometimes with late diagnosed kids it

is hard to figure out what they are missing out on, and where to begin, for

instance, our AV therapist heard Maggie say the word Shampoo - which led her to

believe that Maggie had more language than she really did. Evidently shampoo is

a pretty advanced word, but when you are the youngest of 3 girls, shampoo is

much more important to you than things like the stove. It also helped me to

talk to another mom, her daughter had a similar loss to Maggie's but was a few

years older and she said every day she would be astounded to find out her

daughter didn't know the word for something.

What sent me to tears was when Maggie was 7 she testified in front of the GA

Senate subcommittee on health. She wrote her own speech on the drive to

Atlanta. I still have it. I told her to describe what she remembers about pre

diagnosis. She said " I didn't know Jessie was my sister. " - Granted she is

quite a bit older than Mags and was in college when Maggie was diagnosed. I

guess she thought Jess was this nice " big girl " that visited from time to time.

I had no idea that she didn't even know who her own sister was. I never asked.

She also said she was mad all the time and afraid of the police. Those things

we knew. She also thought horses gave milk, because all the books with cows

also had horses in them.

The other thing is that part of AV is diagnostic - the therapist comes to see

where the trouble areas lie. They are lurking there in every child. For

Maggie it was auditory memory and auditory sequencing. For Bobby it sounds like

recall. BUt that is the beauty of AV, you find the problem areas and work on

them. Doesn't mean he's failing or the therapy isn't working, but its just the

nature of the diagnostic part of AV. And while the therapist may be astute in

picking up on the problems, and knowing where to look for them, you only have

known one hearing impaired child so you are surprised and terrified by the

delays.

It is really amazing and incredibly frightening when you realize just how much

your child doesn't know that she should! I had many tearful drives home after

AV! I had to constantly remind myself of how far we had come. I would do a

journal every night where Maggie would tell things that happened during the day

and I would draw a picture of it. Looked scary (I'm a stick figure kind of

artist) but that helped ME to be able to go over it weeks later to see some of

the progress of things she would say or clearly understand. I think they called

it a language book or journal. It ended up being my favorite thing because it

calmed my terror. I stayed scared to death about Maggie for about 3 years! So

no, you are not alone. And Bobby is so lucky because you KNOW what he is missing

and you are willing to put the shoulder to the plow to help him prepare for the

rest of his life.

When we started AV, I would turn the radio on for the drive to Atlanta and

Maggie would ask if the people were talking or singing. So that was a big thing

when her listening improved to when she realized people were singing on the

radio and not talking. That made me cry all the way to Atlanta and halfway

through the AV session!! And I was fixated on the fact she couldn't count to 10

or say the alphabet in order. I thought you had to know those things before you

went forward - turns out you don't and she did learn them eventually. She was

reading independently before she could say the alphabet in order. So just keep

working and get a pile of books and as we say in the south " go to reading! " And

your therapist is right, you need to be in the right place. It's ok to have a

breakdown, if it wasn't, I'd be in the locked ward or a prison somewhere!!

After our years of AV were over and I began to relax a bit, I ended up very

depressed. It goes with the territory. It was just delayed for me. You are

heading in the right direction with the marathon!! A very positive thing to do.

But remember, hearing loss is invisible, you are a mom not a hearing

professional, you are doing the absolutely best you can and you need to be good

to yourself! Hugs from GA!

[Guest guest]

In a message dated 8/21/2006 11:27:14 AM Eastern Daylight Time,

bkmackellar@... writes:

I am not happy, to say the least. My son already has so much going against

him - constant doctor visits,

growth issues, hearing loss, low muscle tone, possible heart and lung

problems looming in the future.

He doesn't need this too.

--

Bonnie

Bonnie,

Granted your little guy has much more going on than our Ian, but I feel the

same way! So does Ian, poor kid really is tired of being a lab rat.

A few years ago our dentist said Ian should have braces for a " slight

overbite. " Well, the kid has a minor presentation of a craniofacial syndrome

(Goldenhar) and his skull measurements are all a bit off ... and his jaw is

slightly undersized as well as measuring differently on either side of the jaw.

So,

rather than just getting braces like other kids, we had visits to the

craniofacial specialists at Montefiore. Nothing is ever simple around here.

Ian's

overbite is due in part to the undersized jaw, so the fix for it isn't as

simple as braces and could involve jaw surgery as well. After hearing the

diagnosis and possible surgery involved, he looked at me, very dejected, and

asked

" Are my teeth really that bad? " And the answer is, no, they're not. His teeth

are pretty straight. His jaw is growing and becoming " normal " so, if he does

eventually need braces then he'll have them later, after his friends are all

done with them. And he is fine with that.

I feel like I am picking my battles when it comes to what needs to be

" fixed " when it comes to Ian.

And now, after having his recent check-up this summer, we've been told the

boy needs glasses to see the board but not for close work. (sigh) So, once

we're back from vacation, Ian will see the ophthamologist and probably get a

proper prescription. We're leaning towards the metal frames with the thin sides

as well. He played with trying on frames one day when we were in BJs (like a

Sam's club) and seemed to be having fun.

He seems to be okay with the addition of glasses, thank goodness! We'll see

how it goes when it comes time to really pick out some frames ... and then

we'll see if he actually wears them.

Best-- Jill

[Guest guest]

Oh, Elias has the dental stuff facing him as well. Chemo at an early age

damages

the permanent teeth, which are forming around that time. Elias has already

had

Xrays done to see what is going on, and we know that one of his permanent

front teeth is

misshapen pretty badly. His dentist is already making noises about " the

wonderful

things that cosmetic dentistry can do when the time comes " . Ugh, ugh, ugh.

At least he never had head radiation like a lot of the neuroblastoma kids -

that

can permanently stunt jaw development. I guess that would be more like what

your

son has to deal with. I'm glad he is doing so well.

I feel guilty ranting about stuff like this sometimes because I know a lot

of

the other neuroblastoma families, and I know that a lot of them are dealing

with far far worse. Still, when I look at the " normal " kids in the

preschool,

I start feeling like it isn't fair.

Bonnie

>

>

> I

>

> A few years ago our dentist said Ian should have braces for a " slight

> overbite. " Well, the kid has a minor presentation of a craniofacial

> syndrome

> (Goldenhar) and his skull measurements are all a bit off ... and his jaw

> is

> slightly undersized as well as measuring differently on either side of the

> jaw. So,

> rather than just getting braces like other kids, we had visits to the

> craniofacial specialists at Montefiore. Nothing is ever simple around

> here. Ian's

> overbite is due in part to the undersized jaw, so the fix for it isn't as

> simple as braces and could involve jaw surgery as well. After hearing the

> diagnosis and possible surgery involved, he looked at me, very dejected,

> and asked

> " Are my teeth really that bad? " And the answer is, no, they're not. His

> teeth

> are pretty straight. His jaw is growing and becoming " normal " so, if he

> does

> eventually need braces then he'll have them later, after his friends are

> all

> done with them. And he is fine with that.

>

>

>