Beginnings of a letter to school/Bobby

[Guest guest]

Jill...

Since I can't sleep anyway, I went ahead and wrote this. It is ont done and I

have not sent it, I know that I am too angry to send it. I didn't even get into

the part about how his case manager is the one who thinks the " social time " of

recess and lunch in a cafeteria is more important than strengthening his

auditory brain centers with AV therapy. Anyway, here's the letter...

I have been lying in bed trying to sleep for the past 4 hours and it is not

happening tonight. I am pretty upset. When Ellen Gill and I went to the school

today to in-service the staff on how to check the FM and put in Bobby's hearing

aids, both of the hearing aids were off and the boot to one of them was put on

backwards. I realize everyone is new to this, but we have to get this

straightened out NOW. This is the second time during one of my infrequent,

random visits to the school (the other time was during summer school at

Balentine) that the boots were put on backwards. Not only does this not allow

Bobby access to whatever is being said around him through the FM, but also it is

very dangerous to the hearing aid itself. There is very intricate, delicate

circuitry in the back of that boot, and forcing it on backwards could easily

break either the hearing aid or the boot. There is $6,000 dollars worth of

hardware hanging off of this child's ears and it must be treated properly. If

it needs to be replaced for any reason, he loses more time without access to his

environment. I am sure you can see my concern.

Bianca, the SLT at PES, is responsible for putting on the boot and checking the

FM. She was not there for some reason yesterday morning and apologized. I

understand, I truly do. But a back up person has to be appointed immediately so

that in Bianca's absence, someone trained knows how to make sure the boots are

on and the hearing aids are also turned on.

My concern goes much further than expense or access; it is one of safety. If

Bobby doesn't have his hearing aids turned on, then his one ear is totally

occluded by the ear mold to the hearing aid, the other is partially occluded. (I

don't care what they say about an open fit ear mold, if I had a piece of tubing

in my ear canal with a bell shaped piece of rubber on the end, made for the size

of an adult ear canal, it would block some of the sound). This means he cannot

hear very well at all. If there is a bus coming and he can't hear it, or

someone yells to him to stay away from something dangerous, we're going to have

a lot more problems than expense or access. I am not willing to risk it.

I am going in to school tomorrow at the beginning of the day to make sure these

hearing aids are turned on and the boots are on the right way. I am not sure

about this, but I think there is an aide in 's class (Bobby's older sister

who has Mrs. Gonsalo in 3rd grade) who has a hearing impaired child herself.

She was with Bobby when I picked him up last Friday when Jeannie wasn't there

that day. If she is there first thing in the morning, she is probably so used

to caring for her own daughter's hearing aids that she wouldn't have any trouble

checking Bobby's. I would think she would be a perfect backup or even the

person appointed responsible for doing it every day.

Visit Trish and Bobby's Marathon website at

http://www.firstgiving.com/bobbymarathon

[Guest guest]

In a message dated 9/7/2006 9:13:45 A.M. Eastern Standard Time,

bkmackellar@... writes:

Stupid question time : how do you put the boots on backwards? There seems to

be only

one way that Elias's fit on his hearing aids. Or maybe we've been doing it

wrong all along?

And what is an " FM system check " ?

Depending on the model of aid and boot, they can be forced on backwards --

while is why I questioned whether they'd been damaged.

And an FM System check -- for Ian, means taking out his aid, putting the

boot on and listening through it using a stethoscope. She does this for each

aid/boot one at a time. The TOD (or Ian, which seems a little silly, but he is

trained to do this as well) listens through the aid to see if there is static,

if the sound is breaking up ... listens to see if it is okay. She can also

change the programs on the aids to see if 1) they change and 2) if there is

sound coming in on the different programs. She can't check the program settings,

just that the aids are working with our static or anything odd. Ian will

often help out by taking the mike and walking away while talking into it as the

TOD listens through the stethoscope.

They also will use a battery tester on the mike's battery. Sometimes when

the battery unit gets older, it won't hold a charge as long. The school can

order a new battery without needing to send in the system for repairs, thus

pulling it out of the classroom.

Hope this helps -- Jill

[Guest guest]

In a message dated 9/7/2006 9:13:45 A.M. Eastern Standard Time,

bkmackellar@... writes:

The first week at preschool that Elias had his FM system, the boots actually

DISAPPEARED

one day. I got Elias home, and realized that the boots were not on the

hearing aids.

We usually have the opposite happen -- Ian still periodically comes home

with the boots still on. The school owns the system and no parts are suppose to

leave without their permission. Like they actually pay attention!

I take it the Fm is yours -- you guys own it. (Is your system insured?) I'd

have had heart failure that weekend since Elias would have had no clue where

the silly things went. I give you a lot of credit that you gave the boot

lesson without causing any bodily harm to the teacher. Extra points if you

managed to smile through the process. (grin)

Jill

[Guest guest]

In a message dated 9/7/2006 10:10:18 A.M. Eastern Standard Time,

bkmackellar@... writes:

Should we do that each day? Ugh, we are already so chaotic in the morning!

Ian doesn't. I wouldn't. They check the system regularly -- like once a

month, unless they suspect there's something not right.

But he's in high school and speaks up if something isn't right. Since your

guy is little and perhaps not old enough yet to realize that something is wrong

unless it's drastic -- like not working at all, I'd just listen to it once a

week, in the evening when you have 5 minutes of time.

The battery issue didn't arise until Ian's Fm system was about 3 years old

and didn't seem to be holding its charge.

I wouldn't make myself nuts about it every day, just check it regularly to

make sure that you're receiving from the mike.

Jill

[Guest guest]

Stupid question time : how do you put the boots on backwards? There seems to

be only

one way that Elias's fit on his hearing aids. Or maybe we've been doing it

wrong all along?

And what is an " FM system check " ?

The first week at preschool that Elias had his FM system, the boots actually

DISAPPEARED

one day. I got Elias home, and realized that the boots were not on the

hearing aids. It

was a Friday too! I had to wait all weekend to find out what had happened.

Tasha, one of the

teachers, had put them in a " safe place " at nap time, because the hearing

aids squeal incessantly

if the boots are still on them when the hearing aids are taken out. And then

she had

never put them back on. I very nicely gave her a quick course in dealing

with the boots.

Bonnie

[Guest guest]

Should we do that each day? Ugh, we are already so chaotic in the morning!

>

> And an FM System check -- for Ian, means taking out his aid, putting the

>

> boot on and listening through it using a stethoscope. She does this for

> each

> aid/boot one at a time. The TOD (or Ian, which seems a little silly, but

> he is

> trained to do this as well) listens through the aid to see if there is

> static,

> if the sound is breaking up ... listens to see if it is okay. She can also

>

> change the programs on the aids to see if 1) they change and 2) if there

> is

> sound coming in on the different programs. She can't check the program

> settings,

> just that the aids are working with our static or anything odd. Ian will

> often help out by taking the mike and walking away while talking into it

> as the

> TOD listens through the stethoscope.

>

>

>

[Guest guest]

Yes, we own the system - it was acquired through early intervention. I don't

know

if it is insured or not. The hearing aids are - we already lost one!

Ick, more to check on. I feel like I am drowning in to-do lists, which is

why I never get to spend time on important issues like IEP meetings. I had

to increase my work hours too, so i could qualify for my company's insurance

(which has Sloan-Kettering in network) since Elias is no longer on the

special Medicaid program for medically fragile children.

I actually like the teacher in question, Tasha. I think she was supervising

other

kids while the head teacher Liz got the FM system training when it was first

introduced. So she doesn't know as much about it. Unfortunately, I just

found

out that Tasha is leaving to take a head teacher position at another

preschool.

So now I am going to have to go through the whole thing all over again with

a new teacher.

The basic problem with the boots is that you can't turn the hearing aids off

with the boots attached. So if the aids have to come out for nap or

swimming,

they squeal like little maniacs unless the boots are also removed. I don't

even

like taking the boots on and off myself because they tend to separate from

their

little plastic frames. I wish the design were better, so that the hearing

aids could

be turned off with the boots on. I think it would save wear and tear.

>

>

>

> I take it the Fm is yours -- you guys own it. (Is your system insured?)

> I'd

> have had heart failure that weekend since Elias would have had no clue

> where

> the silly things went. I give you a lot of credit that you gave the boot

> lesson without causing any bodily harm to the teacher. Extra points if you

>

> managed to smile through the process. (grin)

>

> Jill

>

>

>

>

[Guest guest]

Bonnie (I think ) wrote:

" Stupid question time : how do you put the boots on backwards? There seems

to

be only one way that Elias's fit on his hearing aids. "

Oh my dear Bonnie. No " stupid question time " , STUPID ACTION time! IT ONLY

GOES ON ONE WAY!!! Unless, of course, you want to shoeve it on and break

it! There was absolutely no connection and the boot did not even go on

securely. If you force it on, I guess yopu can get anything to fit the

wrong way. Humph.

Thank god I run. I slept for 2 hours last night and just came back from a

run atleast feeling I can fake a smile again.

Trish

Trish

[Guest guest]

's system is checked weekly, unless she complains that something isn't

right. Her HI is now meeting with her daily and I know they do simple checks.

For example the HI will walk away from and ask her an open ended

question. If answers it correctly, then it's believed to be working and

they move on.

The battery pack on 's FM lasted for about 3 years as well.

Debbie

Should we do that each day? Ugh, we are already so chaotic in the morning!

Some men see things as they are and ask why. Others dream things that never were

and ask why not. G.B Shaw

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[Guest guest]

I think you really should check the FM system daily for a little kid, with the

aids. You can do this with a stethoscope or with the child. To do it with the

child, you use the Ling 6 sound test. Get them to repeat what you say. But

they can't be looking at you. First do it with FM off to check the aids, then

turn the FM on, go in the next room and say the LIng 6 sound test. This takes

less than a minute or so to do. Maggie didn't get her personal FM until 3rd

grade and by that time she could tell us if something was not working.

[Guest guest]

The speech therapist did something interesting with Elias on Thursday.

Several times, when he wasn't looking, she turned off the FM system. Then

she quizzed him - " does it sound the same? Is the mike working? " . Each time,

he would say " no, its broken " . And then she would tell him that whenever he

thinks it is broken or it doens't sound good, to tell her, or his teacher.

The speech therapist told me to do this with Elias too. She wants to train

him to notice if it isn't working and to tell whoever is using the mike.

She also told us to test the system once a week.

Bonnie

>

> I think you really should check the FM system daily for a little kid,

> with the aids. You can do this with a stethoscope or with the child. To do

> it with the child, you use the Ling 6 sound test. Get them to repeat what

> you say. But they can't be looking at you. First do it with FM off to check

> the aids, then turn the FM on, go in the next room and say the LIng 6 sound

> test. This takes less than a minute or so to do. Maggie didn't get her

> personal FM until 3rd grade and by that time she could tell us if something

> was not working.

>

>

>