Kevin (ID=27) (Jul 6, 2000 10:17:23 AM)
(This user has entered CAPD: From the Heart)

debbie (ID=28) (Jul 6, 2000 8:06:25 PM)
(This user has entered CAPD: From the Heart)

debbie (ID=29) (Jul 6, 2000 9:03:26 PM)
(This user has entered CAPD: From the Heart)

Dorien (ID=30) (Jul 6, 2000 9:32:05 PM)
(This user has entered CAPD: From the Heart)

debbie (ID=29) (Jul 6, 2000 9:32:48 PM)
hi dorien..i hope you havent' been waiting long on me.

debbie (ID=29) (Jul 6, 2000 9:32:54 PM)
i've been working on a website

Dorien (ID=30) (Jul 6, 2000 9:32:58 PM)
Hi Debbie how arw you

Dorien (ID=30) (Jul 6, 2000 9:33:16 PM)
I just got on

debbie (ID=29) (Jul 6, 2000 9:33:40 PM)
I'm doing great tonight.. how about you?

Dorien (ID=30) (Jul 6, 2000 9:33:55 PM)
Much better now

Dorien (ID=30) (Jul 6, 2000 9:34:34 PM)
WE did not have a very good week with the school

debbie (ID=29) (Jul 6, 2000 9:34:45 PM)
what happened?

Dorien (ID=30) (Jul 6, 2000 9:35:32 PM)
They for got to tell me that Tricia's FM unit was broken and had to be sent out

Dorien (ID=30) (Jul 6, 2000 9:36:14 PM)
then they wanted to do some testing for the summer class

debbie (ID=29) (Jul 6, 2000 9:36:17 PM)
how did you find out/

debbie (ID=29) (Jul 6, 2000 9:36:27 PM)
did Tricia tell you?

Dorien (ID=30) (Jul 6, 2000 9:36:55 PM)
I always go to the school to be sure that the summer school teacher knows how to use it

debbie (ID=29) (Jul 6, 2000 9:37:29 PM)
i know i had to have new ear foams put on sarahs..but the day after i called the aud from the school fixed it

Dorien (ID=30) (Jul 6, 2000 9:38:04 PM)
I told the school that they have get them fixed or get her a new set

debbie (ID=29) (Jul 6, 2000 9:38:30 PM)
what did they say?

Dorien (ID=30) (Jul 6, 2000 9:38:33 PM)
then I was told that they got broken in May

Dorien (ID=30) (Jul 6, 2000 9:39:03 PM)
they could not say to much as Tricia is under 504

debbie (ID=29) (Jul 6, 2000 9:39:17 PM)
did you ask why they never bothered to tell you?

Dorien (ID=30) (Jul 6, 2000 9:39:47 PM)
I was told that they felt that Tricia would tell me

Dorien (ID=30) (Jul 6, 2000 9:40:18 PM)
I stated that she should not have to tell me that it is up to them

debbie (ID=29) (Jul 6, 2000 9:40:22 PM)
amazing

Dorien (ID=30) (Jul 6, 2000 9:40:51 PM)
Tell me about it

debbie (ID=29) (Jul 6, 2000 9:41:01 PM)
how hard would have it been for them to write you a note.

Dorien (ID=30) (Jul 6, 2000 9:41:57 PM)
I met with the summer school principal who did not know that she needed them or that Tricia has capd

debbie (ID=29) (Jul 6, 2000 9:42:39 PM)
when sarah was put in an after school tutoring program..no one told the tutor that sarah had capd either

Dorien (ID=30) (Jul 6, 2000 9:43:16 PM)
and there the teachers that we trust with our kids

Dorien (ID=30) (Jul 6, 2000 9:43:39 PM)
now I know why I have trust issues

debbie (ID=29) (Jul 6, 2000 9:43:58 PM)
Sarah's teacher did let me know about her unit being broke..i am going to miss her

Dorien (ID=30) (Jul 6, 2000 9:44:57 PM)
Tricia's teacher did not like seeing me as I would tell her what Tricia's need's were

debbie (ID=29) (Jul 6, 2000 9:45:35 PM)
Sarah's teacher was open and more than willing to help any way she could...she was wonderful..

Dorien (ID=30) (Jul 6, 2000 9:46:32 PM)
the principal in the school is like that but she will be going next year

debbie (ID=29) (Jul 6, 2000 9:47:10 PM)
I cant say the principal and I are on best terms...there is just a friction between us..

Dorien (ID=30) (Jul 6, 2000 9:47:50 PM)
I get that when I go to CSE meeting for my clients

debbie (ID=29) (Jul 6, 2000 9:48:25 PM)
I absolutely dread the beginning of the school year...setting up the new 504 and seeing who Sarah's teacher is

Dorien (ID=30) (Jul 6, 2000 9:49:14 PM)
I know who Tricia has as I told the principal who I wanted her to have

Dorien (ID=30) (Jul 6, 2000 9:49:49 PM)
I even told her who I wanted my son to have

debbie (ID=29) (Jul 6, 2000 9:50:04 PM)
I put in a request for someone with experience working with the hard of hearing

debbie (ID=29) (Jul 6, 2000 9:50:13 PM)
figure they may be a bit more understanding

Dorien (ID=30) (Jul 6, 2000 9:50:28 PM)
good luck

debbie (ID=29) (Jul 6, 2000 9:51:09 PM)
we'll see what happens..

Dorien (ID=30) (Jul 6, 2000 9:51:23 PM)
I asked to have Tricia put in her sisters old class as the teacher was very good

debbie (ID=29) (Jul 6, 2000 9:51:29 PM)
I'm working with the girls over the summer on reading programs to try and help her

debbie (ID=29) (Jul 6, 2000 9:51:40 PM)
that's good

Dorien (ID=30) (Jul 6, 2000 9:52:42 PM)
I 'm going to do the same I even got information on fast forward for the school

debbie (ID=29) (Jul 6, 2000 9:53:09 PM)
we did ffw last fall so im thinking of ordering earobics now

Dorien (ID=30) (Jul 6, 2000 9:53:34 PM)
my son used earobics

Dorien (ID=30) (Jul 6, 2000 9:54:02 PM)
what did you think of fast forward

debbie (ID=29) (Jul 6, 2000 9:54:47 PM)
we liked ffw

Dorien (ID=30) (Jul 6, 2000 9:55:05 PM)
did it help

debbie (ID=29) (Jul 6, 2000 9:55:06 PM)
it was very demanding and took alot of time..i wish we had done it over the summer

debbie (ID=29) (Jul 6, 2000 9:55:34 PM)
yes it did! we started using it at the same time that we got the FM..i think it was the combination of the two together that helped

Dorien (ID=30) (Jul 6, 2000 9:56:01 PM)
that's grate

Dorien (ID=30) (Jul 6, 2000 9:57:43 PM)
I'm going to try to push for it

debbie (ID=29) (Jul 6, 2000 9:57:58 PM)
good luck..let me know how it goes

Dorien (ID=30) (Jul 6, 2000 9:58:26 PM)
I will I have the s/t to help me get it

Dorien (ID=30) (Jul 6, 2000 9:58:52 PM)
she helped me get the fm unit

debbie (ID=29) (Jul 6, 2000 9:59:26 PM)
we got the fm unit after a bit of discussion with the district aud...he originally told me that since sarah was on the 504 she didnt qualify for one

Dorien (ID=30) (Jul 6, 2000 10:00:11 PM)
the school had one but the child moved away so she got it to try

debbie (ID=29) (Jul 6, 2000 10:00:37 PM)
i asked the school to provide me in writing where it said that on a 504 plan sarah could not have one..within a few days it was approved

Dorien (ID=30) (Jul 6, 2000 10:00:59 PM)
I have been working on getting one of her own.

Dorien (ID=30) (Jul 6, 2000 10:01:23 PM)
my ins will not pay for it

debbie (ID=29) (Jul 6, 2000 10:01:36 PM)
my insurance wont touch it either

debbie (ID=29) (Jul 6, 2000 10:01:51 PM)
im working on setting up the new website for the national foundation

Dorien (ID=30) (Jul 6, 2000 10:02:22 PM)
that will be a big help for parents

debbie (ID=29) (Jul 6, 2000 10:03:06 PM)
i hope so..i have to admit i've been a bit discouraged lately....

Dorien (ID=30) (Jul 6, 2000 10:03:24 PM)
I did not think I would find any one who had the same kind of problems as I do with capd

debbie (ID=29) (Jul 6, 2000 10:03:41 PM)
that's why capd is so hard..no two kids are the same....

Dorien (ID=30) (Jul 6, 2000 10:04:19 PM)
no two kids are the same and not to many people know about capd

debbie (ID=29) (Jul 6, 2000 10:04:31 PM)
right now im setting up state contacts for the organization..have to find people to volunteer to help coordinate inforamtion in each state..

Dorien (ID=30) (Jul 6, 2000 10:05:16 PM)
what has to be done maye I can help

debbie (ID=29) (Jul 6, 2000 10:05:29 PM)
im setting up a seperate page for each state to list a state volunteer and list of aud or slp in each state who test or treat capd

Dorien (ID=30) (Jul 6, 2000 10:05:58 PM)
no one I know of at all

Dorien (ID=30) (Jul 6, 2000 10:06:15 PM)
it took me five years

debbie (ID=29) (Jul 6, 2000 10:06:23 PM)
i need to do research in each state on aud who test for capd and get copies of each states exceptional student guidelines

debbie (ID=29) (Jul 6, 2000 10:07:34 PM)
when the organization is up and running i want to put together a list of school districts in states too so that if we can get a public awareness program scheduled for a state we know who to contact

debbie (ID=29) (Jul 6, 2000 10:08:12 PM)
one thing i need now is a list of websites for each state's department of education..it's not hard to do..but it just takes time

Dorien (ID=30) (Jul 6, 2000 10:08:14 PM)
I know education law and even have ny state lawpart 200 and 201

debbie (ID=29) (Jul 6, 2000 10:08:22 PM)
that would be a great help!

debbie (ID=29) (Jul 6, 2000 10:08:44 PM)
education law is one thing i dont know..i just ordered a copy of the official IDEA from the fed government

Dorien (ID=30) (Jul 6, 2000 10:09:28 PM)
I went to school for paralegal

debbie (ID=29) (Jul 6, 2000 10:09:32 PM)
how would you feel about putting together a list of helpful hints for parents in brochure format about being an effective advocate?

Dorien (ID=30) (Jul 6, 2000 10:10:01 PM)
no problem I live to give schools a hard time

debbie (ID=29) (Jul 6, 2000 10:10:34 PM)
do you have a list of advocacy groups?

Dorien (ID=30) (Jul 6, 2000 10:11:01 PM)
no but I can see if I can get one

debbie (ID=29) (Jul 6, 2000 10:11:21 PM)
why dont you see what you can come up with and let me know..i appreciate any and all help trying to get information together...

debbie (ID=29) (Jul 6, 2000 10:11:32 PM)
i guess im feeling really overwhelmed and not sure which way to go right now..

Dorien (ID=30) (Jul 6, 2000 10:11:37 PM)
I work with DFS and they may be able to help

debbie (ID=29) (Jul 6, 2000 10:11:57 PM)
DFS?

Dorien (ID=30) (Jul 6, 2000 10:11:59 PM)
I know the feeling

Dorien (ID=30) (Jul 6, 2000 10:12:16 PM)
Department of family service

debbie (ID=29) (Jul 6, 2000 10:12:19 PM)
oh ok...

debbie (ID=29) (Jul 6, 2000 10:13:01 PM)
Right now im setting up the skelton of the website...i was on the phone a good part of the afternoon talking to webhosting companies..

Dorien (ID=30) (Jul 6, 2000 10:13:38 PM)
It seems like your hart is in this

debbie (ID=29) (Jul 6, 2000 10:14:03 PM)
my heart is definitely in this..i just worry whether or not im the right person to try and coordinate this

Dorien (ID=30) (Jul 6, 2000 10:14:37 PM)
I know when it comes to Tricia I go the extra mial

debbie (ID=29) (Jul 6, 2000 10:14:45 PM)
it really gets to me to see so many people struggling with this disorder the same way i did and no one seems to want to help..I want to help others so they dont have to face this alone

Dorien (ID=30) (Jul 6, 2000 10:15:36 PM)
I know I felt so very alone and then I was told Michael may have capd as well I wanted to give up

Dorien (ID=30) (Jul 6, 2000 10:16:14 PM)
all we can do is face it and make the best life for the children we can.

debbie (ID=29) (Jul 6, 2000 10:17:05 PM)
but we can help others too...capd isnt a crippling or disabling disorder that can't be remeadiated..

debbie (ID=29) (Jul 6, 2000 10:17:51 PM)
where did you finally get the testing done?

Dorien (ID=30) (Jul 6, 2000 10:18:25 PM)
Sullivan diagnostic canter

Dorien (ID=30) (Jul 6, 2000 10:18:36 PM)
center

debbie (ID=29) (Jul 6, 2000 10:19:28 PM)
Can you email me information the center so i can include it in a listing? i would need name, address, phone and if they have a website

Dorien (ID=30) (Jul 6, 2000 10:19:37 PM)
it took three years and then a fight with my ins to pay for the test

debbie (ID=29) (Jul 6, 2000 10:19:48 PM)
that's the type of things i want to list on the site

Dorien (ID=30) (Jul 6, 2000 10:20:24 PM)
I will find out what I can and get back to you over the weekend

debbie (ID=29) (Jul 6, 2000 10:20:51 PM)
thank you!!

Dorien (ID=30) (Jul 6, 2000 10:20:54 PM)
I do need your addredd

Dorien (ID=30) (Jul 6, 2000 10:21:04 PM)
adderss

debbie (ID=29) (Jul 6, 2000 10:22:25 PM)
my email is capdfromtheheart@aol.com

debbie (ID=29) (Jul 6, 2000 10:22:32 PM)
my mailing address is debbie wood

debbie (ID=29) (Jul 6, 2000 10:22:45 PM)
po box 11810 jax, fl 32239-1810

Dorien (ID=30) (Jul 6, 2000 10:24:23 PM)
I will stop at the center tomorrow on my way home from work

Dorien (ID=30) (Jul 6, 2000 10:25:12 PM)
I wish I had some one doing this for me when I found that Tricia had capd

debbie (ID=29) (Jul 6, 2000 10:25:40 PM)
wish i would have too!

Dorien (ID=30) (Jul 6, 2000 10:26:00 PM)
and if I can help I will feel better aboutmyself

debbie (ID=29) (Jul 6, 2000 10:26:25 PM)
do i have your email?

Dorien (ID=30) (Jul 6, 2000 10:26:41 PM)
I always say if I can help one kid a year I have done a good job

debbie (ID=29) (Jul 6, 2000 10:27:30 PM)
that's my goal..it's about helping kids...i always thought if i could help one child through this site than it was worth it!

Dorien (ID=30) (Jul 6, 2000 10:27:35 PM)
7288JD@. com wol

Dorien (ID=30) (Jul 6, 2000 10:27:53 PM)
@wol.com

Dorien (ID=30) (Jul 6, 2000 10:28:24 PM)
sorry I have been up since about 4 AM

debbie (ID=29) (Jul 6, 2000 10:28:24 PM)
7288JD@wol.com ??

Dorien (ID=30) (Jul 6, 2000 10:28:33 PM)
yes

debbie (ID=29) (Jul 6, 2000 10:28:58 PM)
i'll put ya in my address book

Dorien (ID=30) (Jul 6, 2000 10:29:35 PM)
Well I have to get to bed or I will not get up tomorrow.

debbie (ID=29) (Jul 6, 2000 10:29:53 PM)
ok...thanks for your help...goodnight

Dorien (ID=30) (Jul 6, 2000 10:30:04 PM)
good night.