pulling my hair out

[Guest guest]

In a message dated 9/6/2006 5:10:09 P.M. Eastern Standard Time,

chester2001@... writes:

But our next IEP meeting isn't until Oct.

My first thought is that this isn't unusual since everyone is new to all

this, the school as well as your family. But that is still no excuse.

First off, you do not have to wait for the next official meeting to have an

IEP meeting. (Ian's will be in April.) You can have one any time you believe

there is a need. Write a letter making a formal request for a meeting. It

doesn't have to be more than 2-3 sentences long. Send it registered, return

receipt to the person in charge. (Call and get the proper name if you're not

sure

who this should be. Sending it to the wrong person/office can cause delays

and they can claim it went through the wrong channels, delaying things even

more) The district has a set amount of time to respond and set up the meeting.

(not sure what CT's max time is, it varies by state)

I would wait a week and then call and ask what date they have selected. The

date and time must be agreeable to you. If you want the meeting during school

so you don't need to worry about a sitter for Bobby, then request that. You

can bring along anyone you chose to that meeting to support you and/or your

requests.

That said, since the next one is in October which is fairly soon, they could

easily push the limits of their response times and delay a meeting until

then.

But -- and I'm starting a new paragraph to make it stand out. I don't think

I'd bother trying to set up a meeting about this. I would send in a letter

(and make calls too if you feel you can be calm on the phone) and state that

something needs to be done NOW.

Okay ... I take back my post that said you should get the teacher training

sessions in place in his IEP for next year. You need to get them in there now.

The teachers need to be instructed, at the very least, in the workings of

his hardware. When they put that boot on backwards, they could have easily

broken it or the hearing aid -- both rather expensive pieces of equipment.

Also, every day that he does not have his equipment working and used

properly is a day that the school district is out of compliance. That means they

are

in violation of the law. His IEP is a legal document and anything in there

must be followed. If they are routinely not using his FM, turning off his aids,

whatever, then they are routinely out of compliance and that can mean big

trouble for the district.

Do you have a day planner or some daily calendar? If not get one. If so,

start making notes about the day when thing are not in working order. However, I

would not start out by threatening them with non-compliance, but I would

start keeping track of every incident. Save that for later when you might have

a

more extensive list. No one would get on their case at this point since it is

all so new for everyone.

Right now I would express my EXTREME, but very polite, concerns over the

fact that the staff does not know how to deal with Bobby's hardware. Write a

letter -- but have a friend read it first to make sure it is calm, detached and

appropriately expressed. (I'll offer to read it for you if you'd like, but

don't feel obliged to take me up on that). I would relate the info about the

one

FM boot that was put on backwards which could easily have resulted in damage

to both the aid and the boot.

Since this is all so new and things are getting off to such a rocky start, I

would not be discussing a new IEP meeting. Instead I'd be requesting that the

TOD be brought in immediately for an official training session with all

contact personnel so that they can be instructed about the equipment as well as

how to deal with having a D/HOH child in a mainstream classroom.

Now, not that you are at this stage yet ... but file this away in the back

of your mind for if this becomes a constant struggle. Every time they don't use

Bobby's equipment as dictated in his IEP they are infringing on his civil

rights. One of the moms who use to live close to me had a terrible time with

the kindergarten people using her daughter's FM. Instead of the teacher turning

off the mike when she was not instructing the entire class, or that child in

particular, the classroom aide would flip off the child's hearing aids. No

joke ... they apparently didn't realize that they were turning off her hearing

by doing that. The mom contacted the appropriate local advocate and filed

complaints. This is serious stuff and you can take complaints to places other

than the IEP committee an state education department. However, you don't

throw down that gauntlet until things are really quite bad.

Our kids, even if they are classified under IDEA are still covered under 504

and protected by the ADA. They've got a legally recognized disability, an

impaired life skill that impacts their ability to function in the school. I

wish I had known I could file such complaints when I was advocating for Ian! Ah

well, live and learn.

So, for now, if I were in your shoes, I'd be formally requesting IMMEDIATE

training of all contact personnel who deal with Bobby. I'd push to get the

training done asap and then request a meeting to have it officially added to

the IEP.

It sounds like his classroom is currently staffed by the Keystone Cops. And

that is NOT okay. They should have been prepared by a professional on how to

deal with the equipment and your son's needs. Not faking it 'til they break

it.

Best -- Jill

[Guest guest]

OK, So tell me this is how it usually goes ad it will get batter in time.

Bobby goes to AM kindergarten in a mainstream PS. He receives his extra

services after shool such as OT (1 hr/wk), PT (.5 hrs). Speech (1.5) and special

resource teacher (3 hrs/wk.) His primary diagnosis on his IEP is speech and

language delays, though that is the first thing that has to change, it should be

hearing impairment. But our next IEP meeting isn't until Oct.

So today I was with our AV therapist to visit his school and talk to the

teachers about how to check theFM and make sure it is working. When we got

there, both hearing aids were off and the FM boot on one was on backwards.

Woopsie, you teachers. Then we get in with 4 teachers to talk about how to

check the FM, no one person has been appointed to take charge of this, (they

were told a week ago to appoint someone), and all the sudden we are off on a

tangent defending ourselves because they don't understand what AV therapy is and

they want him in extended day school (he'd be there all day) so they can have

time for " their " services. The poor AV therapist tried over and over to tell

them, explain to them, that if the main problem is not addressed, which is that

EVERYONE SCREWED UP AND HE WAS AUDITORILY DEPRIVED FOR 5 YEARS!!! (Sorry I had

to scream to someone), that all the special services in the world won't do

anything for him but make him more dependent on special services. Of course she

was much more tactful. They didn't understand that AV is a life skill, not a

" therapy " where you do it once a day for an hour. It is for me to practice, and

learn and work with him. It is SO HARD for him to do this stuff that some days

I wish they would take him the whole day. But I have faith in him and so does

Ellen, the AV therapist. I am so new to this, I need a lot of support and

practice all the time. But they didn't get it.

I am inches away from crying. I honestly wonder if I should just home school

him. They wanted to see if he could stay in school longer so he wouldn't feel

left out of lunchtime (in a CAFTETERIA...THE WORST PLACE HE COULD BE!!!) and so

he could go out on the playground with the other kids. This was more important

to them than him leaving at 1 to be with me the rest of the day.

FYI, this is a child who fell through the cracks in THEIR system, and heis

hearing loss wasn't caught until Oct of last year. He has been wearing aids for

about 6 months.

Bobby,(and three normally hearing kids) 6 yrs old, hearing loss due to ototoxic

meds in ICU at 3 months and again last year after open heart surgery, R ear had

a mod/severe loss, L ear has a high frequency loss, has two BTE Oticon Tego

Pros. and Trish, who is exhausted by their stupidity.

Visit Trish and Bobby's Marathon website at

http://www.firstgiving.com/bobbymarathon

[Guest guest]

As a parent, you have the right to request an IEP

meeting at any time, for any reason. Send the request

in writing, and follow-up with a phone call. Explain

that you are worried about how things are going, and

you want to meet with everyone involved to solve the

problems.

Kiminy

--- Trish Whitehouse chester2001@...> wrote:

> But our next IEP

> meeting isn't until Oct.

__________________________________________________

[Guest guest]

Although your next IEP meeting is not until October

does not mean that you can't change what is in it now.

le

[Guest guest]

God, Jill, I'm trying to sleep but it's been useless these last two nights.

I am so scared for him. The speech teacher was supposed to be the one who

was putting on the boots and checking the FM, and for some reason she didn't

do it yesterday. She apologized. I don't know who did put them on. I

never thought about breaking them, all that circutry on the back side there

is very fragile looking. I wonder if they already did.

Then the little grey button must have gotten pushed while they were putting

on the boot (the wrong way) and turned off BOTH of his hearing aids. This

was a total shock to me..and the AV therapist found it out by total

accident. I was told that they disabled the on off switch, or the program

button, or whatevger it's called, so that Bobby could never accidentally

turn it off. Yet when the AV listened to it yesterday and pushed the button,

it had three prorgams on one aid and two on the other, one of the three

turned it off and one of the two also turned it off. I wonder how many

times I turned the stupid thing off myself putting my own FM boots on and I

didn't know it. Why didn't somebody tell me? And Bobby has gone so long

without hearing anything that he can't tell the difference between hearing

with the aids or not. Thank goodness one of them is an open fit because

otherwise his ears would have been totally occluded all day at school. I

think I am going to have to go in there tomorrow during his kindergarten

class and check everything myself.

I don't know what to do. I am trying to be patient and not make waves about

this while everyone starts off a new school year and figures out their

places and roles, but I am just dowright scared for him. And I am a total

emotional wreck. I am so ready to homeschool him.

I need a hug from another person who had to parent one of these kids, and

who has managed to do it without murdering everyone who touches their child

in the process.

Trish

Visit Trish and Bobby's Marathon website at

http://www.firstgiving.com/bobbymarathon

In a message dated 9/6/2006 5:10:09 P.M. Eastern Standard Time,

chester2001@... writes:

But our next IEP meeting isn't until Oct.

My first thought is that this isn't unusual since everyone is new to all

this, the school as well as your family. But that is still no excuse.

First off, you do not have to wait for the next official meeting to have an

IEP meeting. (Ian's will be in April.) You can have one any time you believe

there is a need. Write a letter making a formal request for a meeting. It

doesn't have to be more than 2-3 sentences long. Send it registered, return

receipt to the person in charge. (Call and get the proper name if you're not

sure

who this should be. Sending it to the wrong person/office can cause delays

and they can claim it went through the wrong channels, delaying things even

more) The district has a set amount of time to respond and set up the

meeting.

(not sure what CT's max time is, it varies by state)

I would wait a week and then call and ask what date they have selected. The

date and time must be agreeable to you. If you want the meeting during

school

so you don't need to worry about a sitter for Bobby, then request that. You

can bring along anyone you chose to that meeting to support you and/or your

requests.

That said, since the next one is in October which is fairly soon, they could

easily push the limits of their response times and delay a meeting until

then.

But -- and I'm starting a new paragraph to make it stand out. I don't think

I'd bother trying to set up a meeting about this. I would send in a letter

(and make calls too if you feel you can be calm on the phone) and state that

something needs to be done NOW.

Okay ... I take back my post that said you should get the teacher training

sessions in place in his IEP for next year. You need to get them in there

now.

The teachers need to be instructed, at the very least, in the workings of

his hardware. When they put that boot on backwards, they could have easily

broken it or the hearing aid -- both rather expensive pieces of equipment.

Also, every day that he does not have his equipment working and used

properly is a day that the school district is out of compliance. That means

they are

in violation of the law. His IEP is a legal document and anything in there

must be followed. If they are routinely not using his FM, turning off his

aids,

whatever, then they are routinely out of compliance and that can mean big

trouble for the district.

Do you have a day planner or some daily calendar? If not get one. If so,

start making notes about the day when thing are not in working order.

However, I

would not start out by threatening them with non-compliance, but I would

start keeping track of every incident. Save that for later when you might

have a

more extensive list. No one would get on their case at this point since it

is

all so new for everyone.

Right now I would express my EXTREME, but very polite, concerns over the

fact that the staff does not know how to deal with Bobby's hardware. Write a

letter -- but have a friend read it first to make sure it is calm, detached

and

appropriately expressed. (I'll offer to read it for you if you'd like, but

don't feel obliged to take me up on that). I would relate the info about the

one

FM boot that was put on backwards which could easily have resulted in damage

to both the aid and the boot.

Since this is all so new and things are getting off to such a rocky start, I

would not be discussing a new IEP meeting. Instead I'd be requesting that

the

TOD be brought in immediately for an official training session with all

contact personnel so that they can be instructed about the equipment as well

as

how to deal with having a D/HOH child in a mainstream classroom.

Now, not that you are at this stage yet ... but file this away in the back

of your mind for if this becomes a constant struggle. Every time they don't

use

Bobby's equipment as dictated in his IEP they are infringing on his civil

rights. One of the moms who use to live close to me had a terrible time with

the kindergarten people using her daughter's FM. Instead of the teacher

turning

off the mike when she was not instructing the entire class, or that child in

particular, the classroom aide would flip off the child's hearing aids. No

joke ... they apparently didn't realize that they were turning off her

hearing

by doing that. The mom contacted the appropriate local advocate and filed

complaints. This is serious stuff and you can take complaints to places

other

than the IEP committee an state education department. However, you don't

throw down that gauntlet until things are really quite bad.

Our kids, even if they are classified under IDEA are still covered under 504

and protected by the ADA. They've got a legally recognized disability, an

impaired life skill that impacts their ability to function in the school. I

wish I had known I could file such complaints when I was advocating for Ian!

Ah

well, live and learn.

So, for now, if I were in your shoes, I'd be formally requesting IMMEDIATE

training of all contact personnel who deal with Bobby. I'd push to get the

training done asap and then request a meeting to have it officially added to

the IEP.

It sounds like his classroom is currently staffed by the Keystone Cops. And

that is NOT okay. They should have been prepared by a professional on how to

deal with the equipment and your son's needs. Not faking it 'til they break

it.

Best -- Jill

[Guest guest]

We found that the best person who was reliable about checking 's hearing was

the school nurse. A pain to have to go to her every time, but it was worth it

as she was used to being conscientious and wasn't intimidated by the equipment.

The school audiologist couldn't even set the aids...and the teachers didn't

bother...including the itinerant teacher for the deaf. It got incredibly nasty

but we stuck to our guns. Keep that log of days the equipment doesn't work and

then file a complaint and request compensatory services for everyday that he

couldn't receive FAPE ( a free and appropriate public education) We set case

law precedent in land when I took the Baltimore County School System to

court for every day our son did not have a paid parent helper who was to cue for

him and we won a day's tutoring for each day he did not have a helper. Was over

6 weeks worth as I recall. That was almost 7 years ago.

It will be a long and nonending battle, but you will be happy most of the time.

Don't forget to enjoy your children and be happy....I spent too many days

consumed in the fight and missed mine growing up. But it was worth every

heartache and worry as ours is going to turn 16 next month. He's mainstreamed,

taking Advanced Placement college level Chemistry, AP Pre-Calculus, AP World

HIstory, Honors English (because he didn't want to spend every night writing

pages and pages), taking his second Journalism class, drama and Symphonic Band.

He and his friends have a rock band and they just got their first gig playing at

a club, if the law says those under 18 can play there. He's been invited to

join the Baltimore Harmonic Orchestra's percussion section and is one of two top

drummers in his High School marching band. If he can find time, he plans on

being accepted into the Baltimore Raven Football team's marching band. He's

going to the Harvest Dance this weekend since his new heari

ng aids no longer clip off all of the noise, but have a music setting that

simply reduces its volume. He finally smiles alot and from reading the CART

notes that are sent home every night, when kids in his 10th grade English class

were asked to describe him, he was described as the " nicest, " " quietest, "

" polites " person in the class. Those who are old timers on this list know all

of the hell that he and we went through securing compliance over little things

like having working hearing aids, teachers who will use the fm system, etc, just

as you are going through now. I cried so many tears, but also made time to

laugh and have some fun. Keep plugging. There are lots of us here rooting for

you. You are at the beginning of a long journey that will test your strength

and resolve, but you will grow as a person and your child will develop inner

strength from witnessing and appreciating your efforts on his behalf. These

kids turn out terrific. We as their parents just need to run i

nterference all of the way which wears us out emotionally and physically. Right

now, I'm battling a new marching band director who treats like he's

intellectually limited, not legally Deaf. She expects him to stand on the

football field and understand complex marching commands by using his fm from

across the field without lipreading. She has developed no hand signals, etc.,

and yelled at him for two weeks during August practice when he messed up. We

will be having a meeting with her and by the time we're through, she probably

won't like us anymore, but she will accommodate 's hearing loss and come up

with creative ways of ensuring that he hears. She just needs to be educated.

Sadly, you can take a person with minimal education and they will instinctively

know exactly how to work with a deaf child/person. At the same time, you can

have a person with a PHD in deaf education who still has no clue. We have had

one of those people in our lives for 11 years now. We'd rat

her have a street person with common sense.

A hug of support. Just remember that kids are resilient and that through

intensive therapy, you can catch-up.

[Guest guest]

In a message dated 9/7/2006 2:00:59 A.M. Eastern Standard Time,

chester2001@... writes:

I need a hug from another person who had to parent one of these kids, and

who has managed to do it without murdering everyone who touches their child

in the process.

Trish

Trish,

Oh, man I'm welled up reading your note and I send you the biggest hug ...

too bad we're so far apart, I'd bring over coffee and donuts and we could have

a school bashing session just to get it out of your system. Does it help to

say I've been there and you do get past it? That you will manage to work this

out? You really will -- you're stubborn and that's a good thing (grin)

And Bobby is going to be fine ... you're doing all the right stuff, working

with him yourself and you have some good people involved. I practically home

schooled Ian during 4th and 5th grades as we fought with the district to do

what was right. At the time I was worried that he'd never make up what he was

missing. He's doing great. Hollow words, I know since you are in the process

of fighting for Bobby, but believe us when we tell you it's going to work out

because you aren't giving up. That's what is going to make the difference for

him.

First off, let's make sure that Bobby's equipment is okay. Call your

audiologist and say that you need to have Bobby's equipment looked at. Make an

appointment or whatever you need to do so that they can check to make sure that

the programs are still set correctly -- is he suppose to have three and two? I'm

a little confused on this as to what is versus what should be, but in order

to set your mind at ease, have them looked at. Ask the doc questions about

how it could have happened and how to avoid it happening in the future.

Keep track of this appointment and any expenses incurred. I would not send

the bill to the district right now, but I'd be prepared to do that if they

don't get their act together. If there is anything broken or in need of repairs

(as opposed to simply resetting programs), then I'd be passing the expense on

to the district since their personnel caused the damage -- but later on.

Right now, I'd just get things fixed.

<>

You're doing great. Right now your role is the smiling mom who is working so

hard to get all these little bumps in the road smoothed over. You can't

transform into the bitch-woman-from-hell at any point, whenever it becomes

necessary. part of the reason I didn't yank Ian out of school and literally

homeschool him was that he needed the social time with his peers, to develop his

social skills. I handled re-teaching him the academics in the evening so that he

could interact during the day. It was NOT easy, but it was an intentional

choice..

I would still be writing a letter relating the disastrous day and requesting

that the staff be immediately trained by a professional. Their faking it is

going to cost a lot of money when the equipment is damaged. And while it is

out for repairs, the district is out of compliance, which they caused by not

sufficiently training their staff. (Later in the game you could refer to it as

negligence and not some normal accident that caused the need for repairs.)

I send you a great big hug ... and I just put on a fresh pot of coffee, so

if you're in the neighborhood (grin)

Hugs -- Jill

..

[Guest guest]

In a message dated 9/7/2006 9:31:08 A.M. Eastern Standard Time,

JillcWood@... writes:

You can't

transform into the bitch-woman-transform into the bitch-woman- from-hell

at

necessary.

Typo .. You CAN transform.

In fact that transformation is so easy, at least it was for me. Guess, I'm

not that nice to begin with, LOL. Truthfully, I never asked for anything

outrageous, just fought for what Ian actually needed.

I did the " nice mom " for a while, and after a while, when it didn't do any

good and Ian wasn't getting what he needed, I stopped caring if anyone liked

me. In fact, once they were afraid of me, it got easier. (grin)

However, transforming back into the nice mom can take years. There are still

people who will cross the street to avoid me. Which is fine by me.

Best -- Jill.

[Guest guest]

I have the same problem. There is a little button, and according to the

audiologist,

they control the program. She said that when the boots go on the hearing

aids,

they sync up and automatically take over the program. But Tom was pushing

that button to make the hearing aids stop squealing, so I know it is

possible

to override the program. This morning, Elias was complaining that he

couldn't

hear in one ear, and now I am wondering if the button got pushed somehow.

Ugh, these things are so complicated, and the instruction book is written

for several differerent models and programs at once, so I am never sure if

a give instruction applies to us or not. And it take the audiologist at

least a

day to call back, so it is hard to ask on the fly questions.

I am an engineer too, with a PhD. This shouldn't be so hard.

Bonnie

> Then the little grey button must have gotten pushed while they were

> putting

> on the boot (the wrong way) and turned off BOTH of his hearing aids. This

> was a total shock to me..and the AV therapist found it out by total

> accident. I was told that they disabled the on off switch, or the program

> button, or whatevger it's called, so that Bobby could never accidentally

> turn it off. Yet when the AV listened to it yesterday and pushed the

> button,

> it had three prorgams on one aid and two on the other, one of the three

> turned it off and one of the two also turned it off. I wonder how many

> times I turned the stupid thing off myself putting my own FM boots on and

> I

> didn't know it. Why didn't somebody tell me? And Bobby has gone so long

> without hearing anything that he can't tell the difference between hearing

>

> with the aids or not. Thank goodness one of them is an open fit because

> otherwise his ears would have been totally occluded all day at school. I

> think I am going to have to go in there tomorrow during his kindergarten

> class and check everything myself.

>

>

[Guest guest]

In a message dated 9/7/2006 4:16:01 A.M. Eastern Standard Time,

semesky@... writes:

There are lots of us here rooting for you. You are at the beginning of a

long journey that will test your strength and resolve, but you will grow as a

person and your child will develop inner strength from witnessing and

appreciating your efforts on his behalf. These kids turn out terrific.

,

Great post and amen to the above! It's a hard process when things don't go

well or easily, and I'm a very different person than I was when it all began,

and that's not a bad thing. (gin)

<

>

We had issues last year with Ian's English teacher and I was afraid it was

going to end like you describe above, or with us having to move him to a new

class almost halfway through the year. We got lucky and she was willing to

listen and learn and adjust.

I wish you the same luck!

Best -- Jill

[Guest guest]

> A hug of support. Just remember that kids are resilient and that

through intensive therapy, you can catch-up.

>

>