RE: First day of school I'm already stressed

January 5, 2004

It's just my opinion and others may disagree, but I'd get him out of there.

Why? Because *YOUR* gut says it's not right. Just leave him in until you

find another placement, so he will have something. Getting out and seeing

other kids is worth something.

When we moved to this town a year ago we put our youngest in a program that

many people recommended. My husband and I hated it-- it just wasn't right

for our son. He stayed in one month, until we had something else lined up,

then we pulled him out. I'm glad we were able to.

I know you've had a hard time finding something that seems right to you. I

can't remember, have you investigated any small private preschools in your

area? In our last town we had our HOH son in a small private preschool.

Though they didn't have any experience with HOH children, they were so

language-oriented and paid so much attention to the individual child, that

my son did as well there as he would have in an evironment where someone

*did* have experience.

One last comment, and I'm no expert because my son's hearing loss isn't that

severe, but over his educational career it has been important to have some

experts in hearing loss as part of his support team. *BUT* we have sometimes

had most luck in other areas with plain old smart people.

One example, had a speech therapist in our last town who didn't have

any experience with HOH children, but because she was a really great SLP,

she was a superb teacher to him and he really learned well. His first grade

teacher is the same. Doesn't know a thing about hearing loss, but " gets "

kids and learning, and has anticipated and planned for every difficulty.

This has happened to us time and time again.

Sometimes our " experts " have such preconceived notions about how things

should be, that they don't actually help the INDIVIDUAL child because they

have blinders on. It sounds like you go through a lot of that.

I hope you find a better setup. Good luck

Daphne

mom to , 7, HOH, ADD, etc. & Leo, 5

> First day of school I'm already stressed

>

> Hi everyone,

> Today was 's first day of school and as I have mentioned

> before I don't feel the class is the right placement for

> because the other kids are not even able to sit up on their own.

> They have very limited use of their hands and are severely

> delayed. I agreed to let them try this for about 2-3 months and

> if I still didn't agree with the placement then to call an IEP

> meeting. My husband thinks the teacher will call by the end of

> the week telling us she doesn't think he belongs there. I don't know.

> I am already stressing out. He came home and I got a list of

> things he did today. They worked on saying things like " lets

> talk " , and something else I didn't understand by pressing a

> communication activator. From what I understand this is a button

> that you record a message and he presses it and it plays back the

> message. They said they worked on him responding to signs also.

> I'm thinking they are going way too easy on him. He used one of

> those communication devices when he was 18 months old and he

> stopped signing because it was easier to just push the button. I

> agreed that if they had a picture board for him to choose

> spacific pictures that would be ok, but instead of helping him

> gain more communication a communicator is going to limit his

> willingness to sign. I've seen it before. Not to mention he is

> way too old for something like this. He can sign, he is

> physically able to do it and mentally as well, he just needs to

> learn the sign and actually have a reason to use !

> it. They are dealing with the other children who are not able to

> sign and so I think their expectations for are way too low

> and I was frightened to hear that this is what they were working

> on. Not to mention they were only working on responding to signs

> and not for him to sign. Why don't they take the time they are

> wasting on a communicator and use that to teach him how to sign.

> Work on responding to signs and him signing for something he

> wants. I would be semi-ok with a communicator that has multiple

> buttons and you put pictures on each of them for him to choose

> and he pushes the button he wants. Of course I think that is

> unnecessary you could just take a board with the pictures and

> whichever he pushes that's the one he wants. If they are going

> to do pictures then that would work. Not to mention I made it

> clear I wanted to know all the signs they are working on so we

> could work on them at home. tends to not carry over, so if

> he signs something here he will !

> go to school and figure out what works there, and what he does at

> school he won't do at home because he knows that doesn't work at

> home. So we have to do the same thing at home as at school so he

> realizes this works everywhere. They didn't tell me anything

> about which words they were working on. Not to mention why would

> they work on pressing a button that has " lets talk " recorded on

> it. First he doesn't understand what the button is saying, and

> second what is the point of saying that, when he can't talk we

> are working on communicating all ready he doesn't have to ask to

> communicate. I don't know I could be seriously over-reacting, I

> just needed to vent because the more I hear the more stressed I

> am becoming. If I don't vent I will let this build up and get

> even more stressed. I just need to get it out in order to keep

> my sanity. I could be wrong but my gut is telling me they are

> babying him and if they keep it up he is going to regress. I

> can't handle that. They need!

> to have much higher expectations of him, if they don't insist he

> won't do it, he is very stubborn that way so we just have to be

> more stubborn, they aren't being stubborn they are going lower

> than his level and saying lets make this easy for you. Ok if you

> have any suggestions on if I should still wait or if I should

> jump in here. I told the teacher in a note that I didn't want

> him using a single communication device, because he will go

> backwards and not forward and that won't help him either. I said

> if it is one that has a few different pictures that he needs to

> choose from that would be ok. I don't think that they realize he

> is a normal 3 year old who can't communicate, they aren't used to

> that and I don't think they know how to deal with it. Not to

> mention they know I can't prove that because he can't be tested

> due to his lack of language. I just know from the things that he

> knows and does that he is actually very smart.

>

January 5, 2004

Daphne,

Thank you for sharing your experience, It's true we want people who are

experienced with hearing loss, it's just we have a hard time getting anyone

to even admit he has one, because he only shows a mild high frequency loss

on ABR and not audiogram and they want to ignore that and insist it is

mental and that he is learning disabled, which is clearly not the case. My

gut is telling me their expectations of him are way to low. If they put

their expectations at a 2 instead of a 10 he will meet the 2 and nothing

more because that's how he is. He needs to be challenged and pushed to do

stuff. So my problem is getting them to admit he does have a hearing

impairment, he has a 30 dB loss in the high frequencies on ABR and the most

important thing in my opinion is the delay in his latencies which cause the

sound to be incomprehensable. He may also have a condition called word

deafness and all they want to focus is that it is all caused by damage to

the brain so it's a learning problem. My point is that my other son has

spina bifida and the damage to his back cause issues with his legs not

working well, and in some parts not at all, so just because the problem

starts with his back does that mean we should ignore the legs? No you brace

the legs and he can walk. Same thing the problem started in his brain but

that doesn't mean the ear works, so if we aid the ear he may hear better and

be able to function. At the very least he should get schooling for that of

a deaf child with Total communication. This child is not expected to talk,

but that doesn't mean he is learning disabled, just teach him how to sign

and he will be fine. Yes it may take more time because he doesn't

understand that sign can get him anywhere given his problems with pressure

in the past he just started functioning like a normal age appropriate 3 year

old a few months ago, so yes he is behind but mainly because he hasn't been

able to learn until now, but now that he is they need to go full force and

make him do it other wise he will try to cut the corners.

Anyway with regard to schools, we can't afford a private school, but the way

our district works is that we have him evaluated, we come up with an IEP and

if everyone agrees they place him. The problem is when we came up with the

IEP everything sounded great the way they put it. It wasn't until I saw the

class and the children who were falling over in their chairs that I realized

this is not the right place. I think what I am going to do is get situated

with our new case manager, fill her in on . Perhaps find a parent

advocate and call another meeting prepared to fight for what he needs which

is a normal class for hearing impaired children with total communication and

an FM system. There is a school in the other district that would provide

him with what he needs, but that is in the other district. If worse comes

to worse and they can't or won't comply it may get ugly but in the end we

will get what we want.

-- First day of school I'm already stressed