Re: More from Trish and Bobby

May 6, 2006

In a message dated 5/6/2006 1:06:29 P.M. Eastern Daylight Time,

chester2001@... writes:

He emailed me back almost immediately, told me that I should never let it go

this far again, to call his secretary directly, gave me the number and to

tell her to make an a appt with their pediatric audiologist (I guess this is

someone else who deals mainly with peds) ASAP, that to tell then he had said to

get an appt, and she would be able to answer all of my questions. I called

4 times last week, she was in, she had gotten my messages, and she never call

ed to even say that she had gotten the messages. Nothing. Dead end #4.

Email this doctor back with a very polite and lost sounding email. Let him

know that you dropped his name and yet you cannot even get a phone call

returned. Doctors take it very seriously when they tell you to use their name

and

it gets ignored.

I learned this little " trick " by accident when I was in your same situation

and got nowhere. I called the doctor back and said " Okay, I did as you said

and nothing is happening. Do you have someone else I can call? Please let me

know because I feel this really can't wait any longer. " He apparently picked

up the phone right away, called the other doctor's secretary and let her have

an earful, and then talked to his doctor friend who then talked to her about

the importance of " professional courtesies. " I know this only because the

silly secretary complained about me while I was filling out the paperwork in the

office -- I'd gotten there early because for once I did not get lost in the

Bronx and she was telling the story about " that woman who has an appointment

soon. "

It was kind of fun, because when I handed in the forms, I said that perhaps

she should not talk that way about a new patient that way when the new

patient was sitting less than 10 feet away. I thought she was going to cry.

(grin)

Best -- Jill

May 6, 2006

In a message dated 5/6/2006 4:33:03 P.M. Eastern Daylight Time,

chester2001@... writes:

.... but this is kind of repetetion because he needs to HEAR it again and

again. Hear it and understand it. If I ask him what he heard me say, what

does

he understand of it, his reacall and understanding of the story is pretty

good. But I wonder if there's some kind of processing thing going on in his

brain so that he can totally make the story part of his memory. I don't know.

Trish

Our Ian has processing and memory issues. After you describe your phone

after the second accident, it sounds as though Bobby is getting the content and

perhaps it is more reassurance than a processing thing. And it could be a bit

of both.

Not that you want to add more to your plate right now, but if you are

concerned about it, processing and memory issues can be tested for. Ian's were

initially identified as part of the school's standardized testing in order to

classify him. I forget the names of the tests, but perhaps this is part of the

type of testing that you've just had done or requesting from the school.

Ian was about Bobby's age when the processing and memory issues were

identified. I am now wondering if the testing your school has proposed or done

will

cover this as well. The tests are among the standard collection given to all

kids in NY as part of the pre-classification testing.

Have you gotten any test results yet or know the names of any of the tests

they used?

I know that Ian's issues will never really go away -- they were caused by a

non-genetic syndrome (which reduced blood flow to his brain during the 6th

week of gestation.) Some of the issues it caused are the processing and memory

ones, among a few others -- basically some rather limited brain damage.

He'll never be rid of those issues, instead he has learned techniques that

help him cope. Ways to get things past short term and into long term memory.

He's learned to plan his time and begin things as soon as they are assigned. In

short, he has been helped to find the coping techniques that work for him.

If those tests are not among the ones given, at some point when you feel up

to it, you can request them.

Best -- Jill

May 6, 2006

Dear Trish,,

I was told by my child's advocate I can call a private board

meeting with the Board of ed....District level.... before I do that I was

told to call the superintendent ,request a meeting with him....call the

principal and of course the first stop is supervisor of special

services.....finally if all fails ..sign a complaint and requst

mediation....rarely does it go that far...

gina

Trish Whitehouse wrote:

Wow, Everyone, thanks for the warm welcome. I think I've found a list with

kindred spirits.

I just wanted to say, Jill, that I was thinking about how lucky I was to be

alive yesterday, and that even though this month has gone from bad to worse, I

have to keep reminding myself that this is not life threatening and I am not

sitting by my son's bedside while the doctors work on him for three hours to

keep him alive. That's what happened last May at this time. So though I am

frustrated with the bureaucratic red tape from the school, at least I am having

to deal with the school at all because Bobby is alive. As pressing and

immediate as this all seems, it is not life threatening.

Sheri, the two units seem to snap together fine, but the audiologist couldn't

get the computer to program the FM into FM only mode, it would only allow the

FM/M mode. When I ran around in circles for another week trying to call anyone

who knew these systems, they said that it is not that great to put it on FM only

mode anyway, because without having outside sounds, he can't hear himself

talking. So now I know how to use it on the FM/M mode but I don't know how to

do anything else with it. I can use it in the car, and other than that I'm

totally at a loss. You know how these things are, the instruction booklet is

one thing, but real life experience of when to really use these and how is a

totally different matter. I need someone to REALLY show me who to use this

especially since my son has been faking it for so long that he is totally

unreliable in his feedback of how it is working when I ask him.

Ok, here are the road blocks I am running into. I haven't made a lot of friends

lately, and I think that is part of what I have to learn through this...to

approach people with less...um, let's say, " venom " when they haven't called me

back for the third of fourth week in a row. Believe me, I start off very nice.

The place that is contracted out with my region is supposed to supply the school

system with the audiological information they need to help Bobby. The person

who is the educational audiologist is not calling me back. She has a reputation

for this. (Dead end #1) So I went directly to a teacher of the Deaf and HOH at

that place (I'm afraid to say the specific name), sent her Bobby's audiolical

evals, and she is the first person who said Bobby would benefit from another

aid. She also suggested AV therapy and an FM sytem for home. I am frustrated

that no one had ever said anything like this before, including the educational

audiologist at her own facility. When I asked her about this, she said that the

Ed. Audiologist is only contracted to take care of the hearing related equipment

and to give Bobby hearing tests. So far no one will take ownership of what his

EDUCATIONAL needs are, so the only way I think they can legally recommend

anything to my school system is to have

this comprehensive evaluation results to back them up. That is why I am

pushing for it to be done now. It is amazing the little loopholes I am finding

out. His heart defect was always so straight forward, but this is very

" secretive " at times.

So I started to deal directly with this Teacher of the Deaf and HOH, because she

was so helpful, and asked her about parent support groups, etc. She has not

called to answer my questions in over two weeks. I have spaced out three phone

calls to her. They were all very polite. Desperate, but polite. I have no

idea what I did wrong, or if the wind started to blow a different way. I can't

bug her too much because she is the one who is responsible for getting a

comprehensive evaluation done, so I am going to need her along the way. But

that's now two people who are very much involved in this who are not accessible.

Dead end #2.

Then the audiologist from Yale, who up to this point has been very good, dragged

her feet about getting a second hearing aid, telling me that she had to see what

she could do and if it would be worth it. So I took that to mean that these

hearing aids aren't common, or they don't make them, or...how the heck am I

supposed to know how to take it, I'm not an audiologist, but when I asked the

right people, they said that yes, of course they make hearing aids that only

amplify the high frequency sounds, they are no problem to get and you just have

to test him in a booth to see if it makes it any better. Duh. That was easy.

So that's whey I called Yale and left a " venomous " message for the audiologist

that I didn't understand why this was requested 2 months ago, and why my son

STILL does not have the technical equipment he needs to be able to hear

correctly, and that from where I sat, it was bordering on abusive to have a

child who needs something to hear and it was not

ordered. She called within the hour (when previously she hadn't been returning

my emails and calls either) and said it as ordered that morning, and would be

there when I go to have his 6 month test next week. Fine. But geez, what it

takes to get some people to listen! Do I have to turn into a monster?

(Obviously, yes.) Dead end #3

I got in touch with the ENT who we have dealt with for other medical problems we

have with Bobby; I adore this guy. I told him that I have this FM system

sitting here that Yale sold to me, and I have no idea how to use it. That I had

to go to two outside totally unrelated stranger audiologists and have them call

the companies to tell her how to tell me to get it on FM mode, and after I found

that out, was told by another unrelated audiologist that he really needs it to

be on FM/M mode. I obviously do not know what I am doing, and I need help. He

emailed me back almost immediately, told me that I should never let it go this

far again, to call his secretary directly, gave me the number and to tell her to

make an a appt with their pediatric audiologist (I guess this is someone else

who deals mainly with peds) ASAP, that to tell then he had said to get an appt,

and she would be able to answer all of my questions. I called 4 times last

week, she was in, she had gotten my

messages, and she never called to even say that she had gotten the messages.

Nothing. Dead end #4.

I wrote a letter to the person in charge of special services to get a PPT

arranged as soon as possible to get approval for this evaluation to be done by

the school of the Deaf and Hard of Hearing (even though two of the people who

work there are now not calling me back), and she was gone all week.. So I am

sitting on this for yet another week, waiting for someone to move forward. In

the meantime, since this person also has a horrible reputation for not getting

back to parents and ignoring calls, I decided to call the parent advocacy center

and see how long, by law, it takes for this person to schedule a PPT from the

time I notify her that I want one. The law, you're not going to believe this

one, is that she is obligated by law to get back to me about scheduling a PPT

in, quote, " A reasonable time frame. " Nothing more, just " reasonable. " So this

could take weeks or months. Whatever she thinks is reasonable. Unbelievable.

Dead end # 5.

So I guess this is status quo for this hearing issue with kids. It doesn't have

to be. I will keep at them all, making fewer friends in the process, but I

won't let my son get eaten alive in school just because of politics.

So now you can see why it is great to have all you guys to talk to. Even the

school for the Deaf and Hard of Hearing, which was so helpful in the beginning,

is not helping any more. So what can I do but think it must be me? And then to

get hit in the cat twice in the last week, it is more than I can handle with a

smile anymore. Somedays I'm just fighting back the tears and hoping my little

boy will be helped someday soon. In the meantime, I am doing all the things I

did with my other kids when I homeschooled them, reading to him constantly,

teaching him to read with a phonetic approach, writing his letters with him,

telling him stories over and over (does any other person's kid do this? Ask to

hear the same story over and over and over to the point you want to scream? I

mean, I must have repeated the story of these car accidents at least 45 min to

an hour each day since they happened, to the point where I just want to forget

about it and he's the one always bringing

it up in some way or another. It is enough to drive someone completly insasne.

Please tell me this is a hearing issue thing...)

OK, OK, just got to remember, he's alive and we're not in ICU anymore.

Trish, mom to Bobby

May 6, 2006

You said it in one sentence...you have to be thankful that he is alive and not

in ICU anymore and that, guess what, tomorrow is another day! A new day!

Trish Whitehouse wrote: Wow, Everyone, thanks for the

warm welcome. I think I've found a list with kindred spirits.