Re: advocacy and burn out

[Guest guest]

No Gail..it's sitting on a shelf and not being used. Been there for

months..I thought the overlays would have been in by now.

I think to get started, he's better off using it just at school. I am

afraid he would use it as a toy and it's better he understands it's function

at school first. I would like to have it with him all the time within a few

months though.

[Guest guest]

In a message dated 12/27/2001 5:21:17 PM US Mountain Standard Time,

cindysue@... writes:

> . Just found out today that 's augmentitive

> communication device

Ugh! We had a horrid time with this. I even had his aide and the sp ed

teacher go to the aug com trainings with me. Of course, their excuse was

that it was TOO LOUD. Sign language was our next choice. I taught it his

classmates weekly for 4 years...hoping the teachers and aide would catch on.

No luck. Even with it written in his IEP.

[Guest guest]

In a message dated 12/27/01 6:21:16 PM Central Standard Time,

cindysue@... writes:

> Oh Karyn....((((((HUGS))))). What state did you adopt ? Can't your

> adoption worker help with the medicaid?

>

> I get tired at times, too. Just found out today that 's

> augmentitive

> communication device (which is in his classroom with his name on it) is not

> being used because the overlays aren't in. I haven't emailed his special

> ed

> teacher back..but I want to find out who " I " can call and raise hell with.

> This is ridiculous. I know she is going to make a phone call next week,

> too...but this needs pushed and we parents can push when teachers can't.

>

>

>

I talked to the adoption worker and she has called the dept several times and

even had her supervisor call. Of course they just leave a voice mail message.

I push 0 for the operator and they found the person in charge of getting it

done and she faxed the medical assistance dept. with the necessary paperwork

and when I checked with her today she promised to talk to someone over there

to find out the status and call me between 7a.m. and 8 a.m. tomorrow.

I know as the parent we are the MOST concerned about our children and I

really shouldn't/can't expect that others will do much but it gets darn

tiring to be the one always leading the ship into battle. OK enough whining.

Respite is over at 1pm tomorrow. I better enjoy my evening of quiet.

Karyn

[Guest guest]

Oh Karyn....((((((HUGS))))). What state did you adopt ? Can't your

adoption worker help with the medicaid?

I get tired at times, too. Just found out today that 's augmentitive

communication device (which is in his classroom with his name on it) is not

being used because the overlays aren't in. I haven't emailed his special ed

teacher back..but I want to find out who " I " can call and raise hell with.

This is ridiculous. I know she is going to make a phone call next week,

too...but this needs pushed and we parents can push when teachers can't.

advocacy and burn out

> I am really tired of my time being taken up trying to get other people to

do

> their jobs for my son and family. Geez, I've only been at it for 4 years

> (Daivd was 8 years old when he moved in) and if they continue at this rate

> I'm going to be worn out soon.

> For some reason the college students that come to our house to work with

> can't seem to keep their schedules straight. So, the guy scheduled

for

> yesterday a.m. doesn't show up until I call him. Oh yeah!!!

> Then I take to the respite group home for a few days of R and R for

me

> and I am told that he will have one on one there from now on and so the

rate

> will be increased effective immediately. I'm told the one on one will cost

> $300 a weekend. On top of the rate already paid? I think not, so I spent

this

> a.m. calling the exec director to sort that out.

> Of course, after suggesting that they discuss this with our county staff

> (county funds our respite) she decides there was a miscommunication and

the

> rate won't go up. Hmmmm

> Then I have interviews for another college student helper this afternoon

> since two are leaving us. One of the interviewies is a no show.

> Then the state can't seem to get medical assistance changed to his

new

> name and so he will be without coverage after Dec. 31. This means no

in-home

> help until it is cleared up. It also means that in an emergency he has no

> coverage. Let's see, he has a heart condition, has been known to eat small

> objects- Not a kid that should be without coverage. They actually told me

to

> tell providers that he is covered but it just isn't in the computer yet.

Ha

> Ha, I'm sure they will be glad to take my word on that.

> AFter several phone calls I should be finding out tomorrow if this has

been

> taken care of.

> Oh yes and when he gets back to school I get to call an IEP meeting to

push

> the school to discuss transitioning to a middle school for next year.

> And here I decided that my New Years resolution would be to advocate more

for

> state funding. MOre on that later.

>

> Karyn

>

>

> Click reply to all for messages to go to the list. Just hit reply for

messages to go to the sender of the message.

>

>

[Guest guest]

These devices you speak of, aren't they very heavy to lug around too? I

remember a child having one that I helped when I was a teacher's aide about 5

years ago. Very, very heavy to carry back and forth to school. Hopefully

they have improved them so that an adult, or better yet, a child, could carry

it on their own. I always had to carry this child's device for him to the

bus and off the bus when he got to school. Not an easy thing to do for an

adult, let alone a child!

Jackie

[Guest guest]

Hi,

When Maverick had his Aug Com, I had a friend make me a tote for him. She

used quilted fabric with carpet padding inside it. Then if Mav dropped it,

(or threw it) it would be safe. We used it at home first to get him

comfortable with it. He used it in Kindergarten at the charter school, but

when we went to our home school, they stopped using it. It was not high on

our issues to fight with at the time. I made sign the priority instead.

[Guest guest]

<<I get tired at times, too. Just found out today that 's

augmentitive

communication device (which is in his classroom with his name on it) is not

being used because the overlays aren't in. I haven't emailed his special ed

teacher back..but I want to find out who >>

Hi ,

I'm curious to know doesn't his communication device come home with him?

http://www.emandan.freeserve.co.uk/ted.htm

[Guest guest]

we have been big signers since BJ was 6 months old. He finally picked upi

signing, and now I am sooo glad we did start

it. Anyway , at his daycare this year, I bought them a signing book, which

explains the signs,,a nd shows them with a

picture of the sign. I also scanned in the majority of BJ's signs, and under

them put what the sign was, and then under

that again, what he articulated when he did the sign. Well when BJ signs " thank

you " he places his hand on his neck,

and then follows up this throat and " flies " off his chin saying " que " . The

" proper " way is and open hand placed on

chin, with a simple downwards motion to your chest. Well all the ladies at the

day care do it BJ's way/......hope they

don't run into any deaf people....hehehehehe

Michdock@... wrote:

> In a message dated 12/27/2001 5:21:17 PM US Mountain Standard Time,

> cindysue@... writes:

>

> > . Just found out today that 's augmentitive

> > communication device

>

> Ugh! We had a horrid time with this. I even had his aide and the sp ed

> teacher go to the aug com trainings with me. Of course, their excuse was

> that it was TOO LOUD. Sign language was our next choice. I taught it his

> classmates weekly for 4 years...hoping the teachers and aide would catch on.

> No luck. Even with it written in his IEP.

>

>

>