babyblue_27_2000 (ID=70) (Jun 22, 2000 2:32:00 AM)
hello not sure if my son has capd but the teacher at the school said he needed to be tested she said she cannot tell me yes or no but in our iep meeting this is what showed up

babyblue_27_2000 (ID=70) (Jun 22, 2000 2:33:13 AM)
he is a twin so i wonder if my other son his twin has it too

babyblue_27_2000 (ID=70) (Jun 22, 2000 2:34:29 AM)
does anyone else have twins that both have it

babyblue_27_2000 (ID=70) (Jun 22, 2000 2:35:34 AM)
i supose i am the only one online this late at night

debbie (ID=71) (Jun 22, 2000 2:48:47 AM)
(This user has entered CAPD: From the Heart)

Barbara (ID=72) (Jun 22, 2000 7:09:54 AM)
(This user has entered CAPD: From the Heart)

debbie (ID=73) (Jun 22, 2000 5:54:21 PM)
(This user has entered CAPD: From the Heart)

debbie (ID=74) (Jun 22, 2000 7:39:46 PM)
(This user has entered CAPD: From the Heart)

diogenes (ID=75) (Jun 22, 2000 7:39:12 PM)
(This user has entered CAPD: From the Heart)

diogenes (ID=75) (Jun 22, 2000 7:39:41 PM)
hello room

mlmom (ID=76) (Jun 22, 2000 8:09:51 PM)
(This user has entered CAPD: From the Heart)

mlmom (ID=76) (Jun 22, 2000 8:10:14 PM)
Hi Debbie

mlmom (ID=76) (Jun 22, 2000 8:10:41 PM)
Is this Family Chat time?

debbie (ID=74) (Jun 22, 2000 8:10:48 PM)
hi there how are yo tonight?

debbie (ID=74) (Jun 22, 2000 8:10:56 PM)
yes it is....off to a slow start tonight

mlmom (ID=76) (Jun 22, 2000 8:11:02 PM)
I'm very good and you

debbie (ID=74) (Jun 22, 2000 8:11:12 PM)
I'm doing great!

debbie (ID=74) (Jun 22, 2000 8:12:00 PM)
Have you had a good week so far?

mlmom (ID=76) (Jun 22, 2000 8:12:07 PM)
I got a call from the audiologist today and my daughter's CAPD evaluation has been moved up from August to next Tuesday!

debbie (ID=74) (Jun 22, 2000 8:12:22 PM)
that is wonderful to hear!

debbie (ID=74) (Jun 22, 2000 8:12:34 PM)
we are going tomorrow to have Sarah's reevaluation redone

mlmom (ID=76) (Jun 22, 2000 8:13:16 PM)
I was reading the chat archives and I think I recall you saying that there is a list of questions to ask at the eval. somewhere.

debbie (ID=74) (Jun 22, 2000 8:13:40 PM)
i have them at www.angelfire.com/fl2/capd/questions.html

debbie (ID=74) (Jun 22, 2000 8:13:50 PM)
i haven't had them edited yet..but you are welcome to them

mlmom (ID=76) (Jun 22, 2000 8:14:53 PM)
Good luck with Sarah tomorrow. Thanks for the info. I will be sure to refer to your list.

debbie (ID=74) (Jun 22, 2000 8:15:15 PM)
how does your daughter feel about seeing the aud?

mlmom (ID=76) (Jun 22, 2000 8:15:42 PM)
I haven't told her yet. She worries a lot about things like this.

debbie (ID=74) (Jun 22, 2000 8:16:02 PM)
i took both girls to the eye doctor today...they both are getting glasses

mlmom (ID=76) (Jun 22, 2000 8:17:15 PM)
I don't want her to fret for days about the evaluation coming up. I will discuss it with her Monday night I think.

debbie (ID=74) (Jun 22, 2000 8:17:45 PM)
Sarah is all excited about going..

mlmom (ID=76) (Jun 22, 2000 8:18:17 PM)
I'm still learning this internet and chat technology. What does the Archives note mean.

debbie (ID=74) (Jun 22, 2000 8:19:00 PM)
It just means that is someone cant make a chat they can look at the former transcripts of the chats...

debbie (ID=74) (Jun 22, 2000 8:19:29 PM)
example is where you saw the notes about the questions

mlmom (ID=76) (Jun 22, 2000 8:19:55 PM)
That's great that Sarah is excited. Is she always very optimistic? Or is this a sign that she has improved and she know it and has greater self-confidence?

debbie (ID=74) (Jun 22, 2000 8:20:47 PM)
Sarah has always had a great deal of self conifidence..she is a very enthusiatic and outgoing little girl....she doesnt let the capd hold her back ...im very proud of her

debbie (ID=74) (Jun 22, 2000 8:21:12 PM)
Sarah firmly believes she can do anything!

mlmom (ID=76) (Jun 22, 2000 8:21:42 PM)
She sounds great!!! She is a beauty too. I saw her picture on your site.

debbie (ID=74) (Jun 22, 2000 8:22:26 PM)
I grew up as a very quiet, shy girl without alot of self confidence..I promised I would never let my girls do that..I work very hard at ensuring they have good self esteem....

debbie (ID=74) (Jun 22, 2000 8:22:34 PM)
thank you =)

mlmom (ID=76) (Jun 22, 2000 8:23:08 PM)
Does the Archives note mean that this chat is already archived? Or does that refer to Monday or Tuesdays?

debbie (ID=74) (Jun 22, 2000 8:23:37 PM)
this chat will be archived...i try to get them done as quickly as i can..but sometimes it takes me a few days...

debbie (ID=74) (Jun 22, 2000 8:23:58 PM)
all conversations in the chat are recorded and i can go back and put them on the site

mlmom (ID=76) (Jun 22, 2000 8:24:00 PM)
I was a very quiet, shy girl when I was a child too.

debbie (ID=74) (Jun 22, 2000 8:25:04 PM)
I guess I started changing after I moved to florida and started learning to believe in me.......now I'll approach about anyone! *L*

mlmom (ID=76) (Jun 22, 2000 8:25:18 PM)
Oh I understand now. I was looking for the archives from the chat about your non-profit organization forming but I guess it wasn't up yet.

debbie (ID=74) (Jun 22, 2000 8:25:56 PM)
no not yet...i will get them up later tonight or tomorrow evening....i've been running a bit behind this week...

debbie (ID=74) (Jun 22, 2000 8:26:12 PM)
what type of questions do you have about the non profit/

mlmom (ID=76) (Jun 22, 2000 8:26:58 PM)
My daughter, Lauren, is very friendly and outgoing, too. She just gets very frustrated with reading and other school work. She is hard on herself.

debbie (ID=74) (Jun 22, 2000 8:28:10 PM)
do you have other kids?

mlmom (ID=76) (Jun 22, 2000 8:28:52 PM)
I was just wondering how you made out with your non-profit org chat. I chickened out and didn't stay long. I'm sorry.

debbie (ID=74) (Jun 22, 2000 8:29:13 PM)
it's ok..no need to be sorry.....

debbie (ID=74) (Jun 22, 2000 8:29:27 PM)
There were about 10 people in the chat off and on....

debbie (ID=74) (Jun 22, 2000 8:29:59 PM)
I was curious to find out what type of services people were interested in... and if they would support such a non profit

debbie (ID=74) (Jun 22, 2000 8:31:18 PM)
want to know the truth.....im the one who's chicken...i just cross my fingers and hope and pray im doing the right thing..

mlmom (ID=76) (Jun 22, 2000 8:32:17 PM)
Yes, I have a 14 year old daughter, Michelle and my Lauren is 8. Michelle does very well in school as I did as a child. My Lauren has a learning disability is reading and spelling with problem areas in language processing particularly with receptive language. Her SLP was the person who recommended a CAPD eval.

mlmom (ID=76) (Jun 22, 2000 8:33:21 PM)
Hey, that's neat. It spelled out Speech Language Pathologist when I only typed "SLP"

debbie (ID=74) (Jun 22, 2000 8:34:08 PM)
i put in some short cuts to typing in the room at the request of some professionals so when they are answering questions its quicker for them *LOL*

mlmom (ID=76) (Jun 22, 2000 8:35:07 PM)
Lauren's Dad relates a lot to the difficulties Lauren is having with school. But when he was a child, they didn't diagnose LD. He just had to struggle along.

debbie (ID=74) (Jun 22, 2000 8:35:17 PM)
as chatmaster for the room i have some neat options ... i like being able to create my banners up top and control the chat..

debbie (ID=74) (Jun 22, 2000 8:35:41 PM)
i always did pretty good in school...my husband was an average student...

mlmom (ID=76) (Jun 22, 2000 8:35:52 PM)
Did you choose or create the Earobics banner?

debbie (ID=74) (Jun 22, 2000 8:36:24 PM)
i got permission from Earobics to use their logos and put them together in the banner up top and go their apporoval on it

debbie (ID=74) (Jun 22, 2000 8:36:54 PM)
it's a 3 part banner...using two of their logos on my background

mlmom (ID=76) (Jun 22, 2000 8:37:46 PM)
I clicked on the Earobics banner Monday night when I was chatting . That is why I left so abruptly. I spent a good amount of time at the site and I ordered Earobics Level 2 for the Home!

debbie (ID=74) (Jun 22, 2000 8:38:14 PM)
oh great!! I haven't ordered the program yet..i am waiting til i talk to the aud tomorrow

mlmom (ID=76) (Jun 22, 2000 8:38:19 PM)
Thank you so much for everything you have done. Your site has been so helpful!

debbie (ID=74) (Jun 22, 2000 8:38:46 PM)
it's been my pleasure! i am happy that i've been able to help others.....that's what the site is all about

debbie (ID=74) (Jun 22, 2000 8:39:27 PM)
can i ask you a few questions?

mlmom (ID=76) (Jun 22, 2000 8:40:01 PM)
Sure. Ask away.

debbie (ID=74) (Jun 22, 2000 8:40:18 PM)
it's about the non profit.....

debbie (ID=74) (Jun 22, 2000 8:40:35 PM)
what type of information would you want to recieve fromsuch an organization?

mlmom (ID=76) (Jun 22, 2000 8:43:07 PM)
I always wish I would have known more about LD (CAPD and others) sooner. Lauren is reading at a beginning 1st grade level now. But she will be going into 3rd grade in Sept. She would be in 4th but she repeated Kindergartion.

debbie (ID=74) (Jun 22, 2000 8:43:43 PM)
would you be looking for public awareness programs for teachers then?

debbie (ID=74) (Jun 22, 2000 8:43:49 PM)
to help identify capd?

mlmom (ID=76) (Jun 22, 2000 8:44:01 PM)
That would be great!!

ncz/Texas (ID=77) (Jun 22, 2000 8:44:08 PM)
(This user has entered CAPD: From the Heart)

debbie (ID=74) (Jun 22, 2000 8:44:17 PM)
hi ncz how are you tonight?

mlmom (ID=76) (Jun 22, 2000 8:44:28 PM)
Hi ncz

debbie (ID=74) (Jun 22, 2000 8:45:20 PM)
what about something similar to an adopt a friend program.....where you were partnered up wiht someone else with a capd child perhaps over the interent? someone who has been through all the testing

mlmom (ID=76) (Jun 22, 2000 8:45:53 PM)
We never knew anything was wrong with Lauren's abilities until she started Kindergarten.

ncz/Texas (ID=77) (Jun 22, 2000 8:46:09 PM)
tired--my 13 year old daughter has a boyfried now and she is constently on the phone with him. Last night she was on the phone until 12:00 am --just wait Debbie--Sarah will be there soon

debbie (ID=74) (Jun 22, 2000 8:46:33 PM)
i dread that!

ncz/Texas (ID=77) (Jun 22, 2000 8:46:58 PM)
you gotta watch them very carefully

mlmom (ID=76) (Jun 22, 2000 8:47:00 PM)
Then she couldn't learn her alphabet as quickly as other children her age.

mlmom (ID=76) (Jun 22, 2000 8:47:52 PM)
ncz, I have a 14 year old daughter but she hasn't had her first boyfriend yet.

debbie (ID=74) (Jun 22, 2000 8:48:01 PM)
a friend of mine came over for dinner last week..he brought his little boy....my girls were acting all crazy..wanted to put on make up and wear dresses *L* Sarah isnt even 9 til next week!

debbie (ID=74) (Jun 22, 2000 8:48:42 PM)
when Lauren does catch on to an idea, is it like it takes her a bit then she suddenly knows it!!!??

mlmom (ID=76) (Jun 22, 2000 8:50:37 PM)
She was tested at the end of Kindergarten but was not dianosed with any LD. The school personnel and even her pediatrician suspected it was just that she was maturing slower than some and another year in Kindergarten might correct the problem

ncz/Texas (ID=77) (Jun 22, 2000 8:51:31 PM)
mlmom--did your daughter go to preschool ???

debbie (ID=74) (Jun 22, 2000 8:52:45 PM)
we knew in kindergarten that sarah had trouble..but the school never did testing..

ncz/Texas (ID=77) (Jun 22, 2000 8:52:52 PM)
whoops-we lost someone?

debbie (ID=74) (Jun 22, 2000 8:52:57 PM)
i wonder if she clicked on another link at the top *L*

debbie (ID=74) (Jun 22, 2000 8:53:06 PM)
she did that the other night and it took her out of here quick

debbie (ID=74) (Jun 22, 2000 8:54:47 PM)
are you watching the news on tv about what's happening out there in texas regarding that execution?

ncz/Texas (ID=77) (Jun 22, 2000 8:54:56 PM)
Bryan was in a Montessori school for 1 year before starting Kindergarten. They had him doing easy multiplication and he was beginning to learn how to read. When I put him in public school he lost everything he had learned.

debbie (ID=74) (Jun 22, 2000 8:56:01 PM)
i've kind of toyed with the idea of putting the girls in a magnet program here but have kept them in regular school so far..

Kate (ID=78) (Jun 22, 2000 8:56:04 PM)
(This user has entered CAPD: From the Heart)

debbie (ID=74) (Jun 22, 2000 8:56:13 PM)
hi Kate..how are you tonight?

ncz/Texas (ID=77) (Jun 22, 2000 8:56:30 PM)
Graham is know angel. He has 18 armed robberies. Crippled someone for life who is in a wheelchair raped someone over and over, etc....

Kate (ID=78) (Jun 22, 2000 8:56:37 PM)
Be right back

debbie (ID=74) (Jun 22, 2000 8:56:49 PM)
we are loosing them quick tonight! *LOL*

ncz/Texas (ID=77) (Jun 22, 2000 8:56:59 PM)
I guess so!

debbie (ID=74) (Jun 22, 2000 8:57:12 PM)
have you seen what's happening outside the prison???

debbie (ID=74) (Jun 22, 2000 8:57:37 PM)
I've just caught bits and pieces...looks like it's going to a war zone

ncz/Texas (ID=77) (Jun 22, 2000 8:57:56 PM)
yes , it's pathetic and embarassing

debbie (ID=74) (Jun 22, 2000 8:58:07 PM)
wow! that's scary

debbie (ID=74) (Jun 22, 2000 8:59:40 PM)
how is your summer going so far?

ncz/Texas (ID=77) (Jun 22, 2000 8:59:51 PM)
My husband couldn't believe they were allowing such a demonstration.

Kate (ID=79) (Jun 22, 2000 9:00:09 PM)
(This user has entered CAPD: From the Heart)

debbie (ID=74) (Jun 22, 2000 9:00:17 PM)
i cant either!! they should never be allowed to be out there armed like that

debbie (ID=74) (Jun 22, 2000 9:00:21 PM)
welcome back Kate

Kate (ID=79) (Jun 22, 2000 9:00:28 PM)
Sorry, I'm back.

ncz/Texas (ID=77) (Jun 22, 2000 9:00:31 PM)
summer in Texas is very hot! Bryan is doing the Fast Forward program and is doing great

Kate (ID=79) (Jun 22, 2000 9:00:45 PM)
What are we discussing?

debbie (ID=74) (Jun 22, 2000 9:01:00 PM)
I"ve lived in texas before..but not during summer thank goodness

debbie (ID=74) (Jun 22, 2000 9:01:17 PM)
just kind of chit chatting Kate....how have you been?

Kate (ID=79) (Jun 22, 2000 9:01:58 PM)
Busy, Busy Busy...and I thought the summer was supposed to slow down. How are you guys?

Kate (ID=79) (Jun 22, 2000 9:02:23 PM)
Debbie,

Kate (ID=79) (Jun 22, 2000 9:02:46 PM)
I haven't had a chance to mail you that packet but I will very soon.

debbie (ID=74) (Jun 22, 2000 9:02:52 PM)
summer has not slowed down here at all! i put the girls on the swim team and they are taking lessons..so we are doing the pool twice a day...while they swim i am doing paperswork....

debbie (ID=74) (Jun 22, 2000 9:03:11 PM)
ok Kate..whenever you get a chance.. ihavne't even been to the po box for a few days

Kate (ID=79) (Jun 22, 2000 9:03:32 PM)
ncz, my son is doing FFw too. How's it going for Bryan?

ncz/Texas (ID=77) (Jun 22, 2000 9:03:58 PM)
KATE--How old is your son????

Rose (ID=80) (Jun 22, 2000 9:04:01 PM)
(This user has entered CAPD: From the Heart)

debbie (ID=74) (Jun 22, 2000 9:04:13 PM)
we went to the eyedoctor today for new glasses for both girls and are going to Gainesville tomorrow to have Sarah's reevaluation done again

Kate (ID=79) (Jun 22, 2000 9:04:14 PM)
Jack is 12 but he'll be 13 next month

debbie (ID=74) (Jun 22, 2000 9:04:17 PM)
hey Rose!

ncz/Texas (ID=77) (Jun 22, 2000 9:04:27 PM)
HI ROSE

Rose (ID=80) (Jun 22, 2000 9:04:44 PM)
Hello everyone!

debbie (ID=74) (Jun 22, 2000 9:04:49 PM)
how are you tonight?

mlmom (ID=81) (Jun 22, 2000 9:05:20 PM)
(This user has entered CAPD: From the Heart)

Tammy (ID=82) (Jun 22, 2000 9:05:25 PM)
(This user has entered CAPD: From the Heart)

Kate (ID=79) (Jun 22, 2000 9:05:26 PM)
Debbie, if you don't mind my asking...are you having her reevaluated because the audiologist asked you to?

Rose (ID=80) (Jun 22, 2000 9:05:32 PM)
Okay I just got back from my daughters gymnastics picnic /pool party

debbie (ID=74) (Jun 22, 2000 9:05:39 PM)
there you are mlmom! thought we lost you!

debbie (ID=74) (Jun 22, 2000 9:05:42 PM)
hey Tammy!

Kate (ID=79) (Jun 22, 2000 9:05:49 PM)
Hi Rose, Himlmom, Hi Tammy

Tammy (ID=82) (Jun 22, 2000 9:05:57 PM)
Hi everybody...

mlmom (ID=81) (Jun 22, 2000 9:06:03 PM)
I am soooo sorry Debbie. We had a power outage here!

Rose (ID=80) (Jun 22, 2000 9:06:23 PM)
I was away on vacation so that is why I haven't been around lately.

mlmom (ID=81) (Jun 22, 2000 9:06:23 PM)
Hi everybody.

Kate (ID=79) (Jun 22, 2000 9:06:28 PM)
ncz, How old is your son?

debbie (ID=74) (Jun 22, 2000 9:07:03 PM)
Kate, I wanted to have her reevaluated since it had been over 2 years since she was diagnosed. I wanted to see if there had been progress. We did the reevaluation in May, but for various reasons we want to confirm the results of those testing...going to do the same tests in a different office

debbie (ID=74) (Jun 22, 2000 9:07:44 PM)
mlmom i just thought you clicked on another banner up top to see where it would take you !*LOL*

Kate (ID=79) (Jun 22, 2000 9:07:45 PM)
Oh, I just wondered. Dr. Ferre said she didn't need to see Jack again but would like to after the FFW

Rose (ID=80) (Jun 22, 2000 9:08:05 PM)
I am planning on applying for a medical card for my son , he is eligible for wrap around and then I will get him reevaluated.

debbie (ID=74) (Jun 22, 2000 9:08:29 PM)
since the last eval we have done FFW and used an FM so i want to see how they have affected the capd

debbie (ID=74) (Jun 22, 2000 9:08:41 PM)
Tammy, guess who was in the chat last week?

Tammy (ID=82) (Jun 22, 2000 9:08:53 PM)
no idea...who?

debbie (ID=74) (Jun 22, 2000 9:08:56 PM)
Rose, what is wrap around?

Kate (ID=79) (Jun 22, 2000 9:09:04 PM)
Debbie, did you get any good suggestions for the non profit org.?

Rose (ID=80) (Jun 22, 2000 9:09:25 PM)
It is a medical card that will cover expenses your insurance doesn't.

ncz/Texas (ID=77) (Jun 22, 2000 9:09:26 PM)
Be back later--

mlmom (ID=81) (Jun 22, 2000 9:09:28 PM)
I know. I was saying that you were going to think I am crazy!

debbie (ID=74) (Jun 22, 2000 9:09:29 PM)
Patti , she said she hadnt seen us since she diagnosed sarah so she thought she'd stop in

debbie (ID=74) (Jun 22, 2000 9:09:34 PM)
bye ncz

debbie (ID=74) (Jun 22, 2000 9:10:01 PM)
not at all...mlmom....the banners all link to some good sites!!!

Rose (ID=80) (Jun 22, 2000 9:10:02 PM)
It is secondary to your insurance , but it covers deductibles and things insurance won't cover.

debbie (ID=74) (Jun 22, 2000 9:10:18 PM)
Rose, i've never heard of that before....is that a state plan?

Tammy (ID=82) (Jun 22, 2000 9:10:28 PM)
that's great! what did she have to say?

debbie (ID=74) (Jun 22, 2000 9:10:46 PM)
once everyone found out she was an aud...she was bombarded with questions! *L*

debbie (ID=74) (Jun 22, 2000 9:10:59 PM)
she's going to start trying to participate in some chats.... =)

Rose (ID=80) (Jun 22, 2000 9:11:08 PM)
It is applied for through welfare but income isn't used to determine eligibility.

debbie (ID=74) (Jun 22, 2000 9:11:43 PM)
Rose, i'm sorry if i'm being nosey please forgive me....may i ask what type of cost there is for it?

Tammy (ID=82) (Jun 22, 2000 9:12:13 PM)
poor thing...but she was always great about answering any questions i had about cj...

debbie (ID=74) (Jun 22, 2000 9:12:54 PM)
i've talked to her several times on the phone...she's always answered questions that way...it took me a minute to figure out who she was..she signed in under PSL

debbie (ID=74) (Jun 22, 2000 9:13:01 PM)
how is cj?

Rose (ID=80) (Jun 22, 2000 9:13:12 PM)
You have to write applying for medical for a disabled child on the application. I am not certain if they will give it if your child only has CAPD, but my son has multiple diagnosis and therefore is eligible.

debbie (ID=74) (Jun 22, 2000 9:13:27 PM)
Kate, i've not forgotten about the kids chat...i promise!

mlmom (ID=81) (Jun 22, 2000 9:13:43 PM)
Anyway, I was about to explain that my daughter spent a second year in Kindergarten and had mostly all the same struggles (with some minimal progress).

debbie (ID=74) (Jun 22, 2000 9:13:50 PM)
where do you write to?

Rose (ID=80) (Jun 22, 2000 9:13:54 PM)
It costs nothing at all it is given based on medical need.

Tammy (ID=82) (Jun 22, 2000 9:14:17 PM)
he's doing okay...he starts summer school on monday...clif and i are seriously considering homeschooling all the kids since the school board won't do anything for him...

debbie (ID=74) (Jun 22, 2000 9:14:46 PM)
that's such a shame tammy about the schools here....it' makes me so angry

Rose (ID=80) (Jun 22, 2000 9:14:48 PM)
You apply at your local welfare office and be sure to write Medical for disabled child on the top of the application.

debbie (ID=74) (Jun 22, 2000 9:15:09 PM)
Rose how did you find out about that?

Tammy (ID=82) (Jun 22, 2000 9:15:21 PM)
he's actually doing alot better with the reading though...he's read four books now...although he is still struggling.

Rose (ID=80) (Jun 22, 2000 9:15:33 PM)
Tammy you need an advocate, I took one to my son's last IEP meeting and they were shaking. We got everything we asked for.

debbie (ID=74) (Jun 22, 2000 9:15:34 PM)
that's good Tammy..that is progress!

debbie (ID=74) (Jun 22, 2000 9:15:50 PM)
Rose in our area the advocates are sponsored by the school

Kate (ID=79) (Jun 22, 2000 9:16:10 PM)
That's o.k. Debbie, the summer may be more hectic than during the year. I just had another idea...since it's been so great having an audiologist and other guests how about some people from other fields like psychologist, education...maybe even insurance...ha!

Rose (ID=80) (Jun 22, 2000 9:17:19 PM)
Well actually I first heard about it when I was looking for help for my sister and her twins. I was told my son was eligible then, but he didn't have any official diagnosis at the time. I had to waitI got diagnosis of enough things to go apply.

Tammy (ID=82) (Jun 22, 2000 9:17:21 PM)
i'm so frustrated with them i can't even think straight anymore. we believe with homeschooling, cj (and the other kids) will get alot more one on one attention and we can take the time he needs to make sure he understands the concept before moving on to the next one.

debbie (ID=74) (Jun 22, 2000 9:17:24 PM)
Kate, I would really enjoy having others..the trouble is finding the volunteers..i will keep working on it..but if you all have any ideas feel free to talk to them or refer them to me!! I can always use help!

debbie (ID=74) (Jun 22, 2000 9:18:10 PM)
TAmmy,, if I am being to personal please say so.....what about yourjob though? are you going to leave your position?

Kate (ID=79) (Jun 22, 2000 9:18:10 PM)
Tammy, I've been reading the most wonderful things about homeschooled kids. I just can't imagine my doing it for a middle schooler. I really think it's going to keep being more common!

Rose (ID=80) (Jun 22, 2000 9:18:14 PM)
Tammy my son is getting ESY services this summer, the school is paying for him to go to summer school.

ncz/Texas (ID=77) (Jun 22, 2000 9:19:01 PM)
Kate--my son is 11 years old and going to middle school next year (ugh!!)

debbie (ID=74) (Jun 22, 2000 9:19:06 PM)
Rose when I called around looking for a parent advocate in this school,, i got a message on my answering machine letting me know which on the school district recommended for me

Tammy (ID=82) (Jun 22, 2000 9:19:19 PM)
cj was retained in the first grade so he "qualified" for summer school...he wasn't happy about it--until we drove past the school and he saw the playground. now, he's looking forward to it!

Rose (ID=80) (Jun 22, 2000 9:19:27 PM)
Debbie then my advocate suggested that he was eligible and I should apply so his continued testing doesn't make me go broke.

Rose (ID=80) (Jun 22, 2000 9:19:40 PM)
Tammy why was he retained?

Tammy (ID=82) (Jun 22, 2000 9:20:05 PM)
he wasn't "performing up to grade level".

Rose (ID=80) (Jun 22, 2000 9:20:16 PM)
Debbie you have to look for a private advocate.

mlmom (ID=81) (Jun 22, 2000 9:20:37 PM)
Finally, another year later, during the fourth quarter of her 1st grade year, my daughter was retested and diagnosed with LD (of unspecified origin).

debbie (ID=74) (Jun 22, 2000 9:20:39 PM)
Rose I did...every person I talked to led back to the school

Kate (ID=79) (Jun 22, 2000 9:20:41 PM)
Yes ncz...middle school is VERY interesting. We are really finding the group socializing at this age is tough for kids with capd

Tammy (ID=82) (Jun 22, 2000 9:21:09 PM)
i've talked with several parents who are currently homeschooling their kids. they swear by it and their kids are excelling.

Rose (ID=80) (Jun 22, 2000 9:21:26 PM)
Was this okay with you? I wouldn't allow them to retain my son since they weren't addressing his problems it wouldn't benefit him to repeat the grade.

Kate (ID=79) (Jun 22, 2000 9:21:56 PM)
I keep reading how incredible the test scores are of home schooled kids.

Rose (ID=80) (Jun 22, 2000 9:22:30 PM)
Debbie try contacting Sheri from amicus for children, even though she is in PA maybe she can direct you to someone in Florida.

debbie (ID=74) (Jun 22, 2000 9:22:39 PM)
my neighbor home schools....her kids do great..i honestly dont know if i would have hte patience..

Tammy (ID=82) (Jun 22, 2000 9:22:49 PM)
i called everybody...they all told me that we couldn't force them to promote him if his teacher said he wasn't performing grade level tasks...it didn't matter to them that even she said retaining him probably wouldn't do him any good academically.

ncz/Texas (ID=77) (Jun 22, 2000 9:23:09 PM)
I know I don't have the patience to homeschool.

debbie (ID=74) (Jun 22, 2000 9:23:19 PM)
they say he isnt performing..but yet they wont help him????? that's our school district

Kate (ID=79) (Jun 22, 2000 9:23:44 PM)
Has anyones school used "communication disorder" instead of LD. I was told my son wouldn't qualify for LD but maybe for a communication disorder.

debbie (ID=74) (Jun 22, 2000 9:23:59 PM)
Tammy if you could fight them retaining hm,,,would you?

Tammy (ID=82) (Jun 22, 2000 9:23:59 PM)
well, clif says he can handle math and science. i'm going to do the language arts, history, and social studies.

Rose (ID=80) (Jun 22, 2000 9:24:15 PM)
That was weird I typed PA and PHONEMIC ASWARNESS came up

Tammy (ID=82) (Jun 22, 2000 9:24:48 PM)
yes, i would fight them about retaining him...i don't see the point in retaining him if it's not going to help.

Rose (ID=80) (Jun 22, 2000 9:24:58 PM)
every time I type the abbreviation for Pennsylvania that comes up instead.

debbie (ID=74) (Jun 22, 2000 9:25:20 PM)
oops..that's my fault rose..i put in abbreviations for short cuts to typing *L*

ncz/Texas (ID=77) (Jun 22, 2000 9:25:23 PM)
Rose --I am getting worried about you

Tammy (ID=82) (Jun 22, 2000 9:25:47 PM)
debbie, did sara bring something home from school about a lexile reading score? cj did...he scored 10 points.

ncz/Texas (ID=77) (Jun 22, 2000 9:25:48 PM)
sorry Rose--program error

Rose (ID=80) (Jun 22, 2000 9:26:04 PM)
Tammy do you know they are legally not allowed to fail a child with a disability without an explaination. This is why getting a child an IEP is so important.

debbie (ID=74) (Jun 22, 2000 9:26:14 PM)
try it again rose

debbie (ID=74) (Jun 22, 2000 9:26:26 PM)
pa

Tammy (ID=82) (Jun 22, 2000 9:26:35 PM)
cj has an iep but only for speech therapy.

Rose (ID=80) (Jun 22, 2000 9:27:14 PM)
I was trying to say if you contact Sheri from Amicus for children maybe she can refer you to an advocate in your area even though she is located in PA.

Rose (ID=80) (Jun 22, 2000 9:27:46 PM)
Tammy you have to insist that all of his problems be added to the IEP or you must refuse to sign it.

Tammy (ID=82) (Jun 22, 2000 9:28:31 PM)
they refuse to update his iep...they say he doesn't qualify for services as his scores on their tests are 1 point too high...

Kate (ID=79) (Jun 22, 2000 9:28:41 PM)
A lawyer...maybe that's another one to add to the guest list...

debbie (ID=74) (Jun 22, 2000 9:29:01 PM)
I"m trying to get some educational advocates

Rose (ID=80) (Jun 22, 2000 9:29:17 PM)
At the very least Sheri can give you great advice and she would probably even advise you . I sent her all my paperwork to review and she caught every error they made, she had them visibly shaking.

Tammy (ID=82) (Jun 22, 2000 9:29:27 PM)
we provided all the documentation and medical records showing cj's speech delay, motor skill delay, and capd...they ignored it all...

Kate (ID=79) (Jun 22, 2000 9:30:00 PM)
That would be great...are you finding some that you ask aren't willing to participate Debbie or is it just finding them?

debbie (ID=74) (Jun 22, 2000 9:30:08 PM)
Rose the school district here is horrible when it comes to capd..

debbie (ID=74) (Jun 22, 2000 9:30:17 PM)
it's finding them and busy schedules also

Rose (ID=80) (Jun 22, 2000 9:30:32 PM)
Tammy they tried to do that with my son and actually did so when I went alone. The advocate fixed that though.

ncz/Texas (ID=77) (Jun 22, 2000 9:30:36 PM)
Tammy--my son did not qualify for LD in 3rd grade because of that 1 point!!!!!!! He is now severely language delayed because the school told me that there was nothing wrong with my son and told me not to worry!! I know better now!! I should have gone back and fought then but I was too intimidated by the district. NOT ANYMORE!!!

Kate (ID=79) (Jun 22, 2000 9:31:04 PM)
Ditto here NCZ

debbie (ID=74) (Jun 22, 2000 9:31:26 PM)
Tammy I am not an official advocate, but I am willing to go with you, if you would like..

Rose (ID=80) (Jun 22, 2000 9:31:37 PM)
debbie I will ask Sheri if she could host a chat for us, she is really great.

Tammy (ID=82) (Jun 22, 2000 9:31:42 PM)
we were actually told at cj's iep meeting that duval county does not recognize capd....they know he has a problem (they admit this part), we've told them what the problems are, but they still refuse to help him!

debbie (ID=74) (Jun 22, 2000 9:31:54 PM)
maybe as two parents together facing the same problem it would help

debbie (ID=74) (Jun 22, 2000 9:32:00 PM)
Rose I would really appreciate that!

ncz/Texas (ID=77) (Jun 22, 2000 9:32:25 PM)
How old is cj??

Kate (ID=79) (Jun 22, 2000 9:32:27 PM)
Yes Rose, she sounds great!

mlmom (ID=81) (Jun 22, 2000 9:32:37 PM)
This is the exact same point I was about to make to Debbie about the usefulness of a non-profit org in promoting public awareness among parents.

Rose (ID=80) (Jun 22, 2000 9:32:42 PM)
Maybe you should all go to amicus for children and write to sheri. She would probably be willing to review your information and give you advice and information to back you position.

debbie (ID=74) (Jun 22, 2000 9:32:49 PM)
Tammy I was told the same thing. What so funny is that Bill P worked with Dr Jack Katz

Tammy (ID=82) (Jun 22, 2000 9:33:24 PM)
i'm not sure i want to fight them anymore...maybe clif and i can do it better than they can--especially since they don't want to help him. cj is 7.

Rose (ID=80) (Jun 22, 2000 9:33:44 PM)
I knew the school was wrong but didn't know how badly they were trying to get over on me until she helped me out.

debbie (ID=74) (Jun 22, 2000 9:33:46 PM)
but if you home school will they still keep him at a first grade level?

Kate (ID=79) (Jun 22, 2000 9:33:54 PM)
I feel that way too alot, Tammy

ncz/Texas (ID=77) (Jun 22, 2000 9:33:55 PM)
Tammy--don't give up

Tammy (ID=82) (Jun 22, 2000 9:34:07 PM)
oh, i don't have a problem with bill p...it's everyone else that i could strangle.

debbie (ID=74) (Jun 22, 2000 9:34:29 PM)
i dont have a problem with bill p either..but as the leading aud i feel he should help us

Tammy (ID=82) (Jun 22, 2000 9:34:34 PM)
if cj passes summer school, he will be promoted to the second grade.

Tammy (ID=82) (Jun 22, 2000 9:35:07 PM)
i know when bill p went to bayview, cj's teacher basically ignored him...

debbie (ID=74) (Jun 22, 2000 9:35:07 PM)
if anyone should be trying to make the school district understand capd it should be their audiologist

debbie (ID=74) (Jun 22, 2000 9:35:28 PM)
did bill recommend accomodations?

Rose (ID=80) (Jun 22, 2000 9:35:51 PM)
Tammy isn't our job hard enough without adding homeschoooling to the picture. This is their job and although I also work with my kids. I really doubt i could really address his needs at home, this is especially true since I have 4 children and so far the oldest three all have LD's to deal with.

mlmom (ID=81) (Jun 22, 2000 9:35:59 PM)
Sometimes I feel like so much time was lost before my daughter started receiving support services.

ncz/Texas (ID=77) (Jun 22, 2000 9:36:00 PM)
You could request an FM system. Under the new IDEA regs--it's possible to get him one. Contact the assistive technology person in the district and forward the audiologist report (do you have an audiologist report?)

debbie (ID=74) (Jun 22, 2000 9:36:13 PM)
we did both get fm units

Tammy (ID=82) (Jun 22, 2000 9:36:24 PM)
he provided the fm unit but didn't say anything about accomodations.

ncz/Texas (ID=77) (Jun 22, 2000 9:36:53 PM)
What type of FM unit?

debbie (ID=74) (Jun 22, 2000 9:37:05 PM)
we have a personal fm..the easy listener

ncz/Texas (ID=77) (Jun 22, 2000 9:37:20 PM)
Is he okay with that??

Rose (ID=80) (Jun 22, 2000 9:37:40 PM)
They really don't offer anything Tammy you have to go in with recommendations from private testing facilities and give examples of why your child needs specific services.

ncz/Texas (ID=77) (Jun 22, 2000 9:37:45 PM)
Or should I say does he mind wearing it??

Tammy (ID=82) (Jun 22, 2000 9:37:51 PM)
according to cj's occupational therapist, his fine motor skills are at the level of a 4 yr old--but they say he doesn't qualify for school-based ot.

carol (ID=83) (Jun 22, 2000 9:38:14 PM)
(This user has entered CAPD: From the Heart)

Tammy (ID=82) (Jun 22, 2000 9:38:19 PM)
cj loves the fm unit...it helps him somewhat in school and all the kids think it's "cool".

debbie (ID=74) (Jun 22, 2000 9:38:23 PM)
hi carol...happy you could join us

carol (ID=83) (Jun 22, 2000 9:38:42 PM)
hi all..sorry i'm late...took the boys to the park

debbie (ID=74) (Jun 22, 2000 9:38:51 PM)
that's ok!

Kate (ID=79) (Jun 22, 2000 9:39:10 PM)
ncz, my son started wearing an fm trainer this year in 6th grade and it helped alot!! I worry he will fight it though in the near future. They don't want to be different.

carol (ID=83) (Jun 22, 2000 9:39:32 PM)
so what is the topic?

Rose (ID=80) (Jun 22, 2000 9:39:43 PM)
Did the school see his report? Secondly you may have to show how it affects his ability to participate in school or other life activities, they have to provide services if you prove that it is adversely affecting him even if he doesn't meet their school standards for eligibility.

debbie (ID=74) (Jun 22, 2000 9:39:51 PM)
we are talking about getting help in school

ncz/Texas (ID=77) (Jun 22, 2000 9:40:01 PM)
Tammy--most insurance companies will pay for a private OT evaluation. Bryan will be going to one this summer after the school offered a 25 cent pencil grip!!!!!!! ugh!!

Tammy (ID=82) (Jun 22, 2000 9:40:04 PM)
rose, i did take in everything i had about accomodations and recommendations from his audiologist, his pediatrician, his occupational therapist, and from the private psychologist i took him to for an ld evaluation.

carol (ID=83) (Jun 22, 2000 9:40:12 PM)
ahhh...could use some knowledge..lol

mlmom (ID=81) (Jun 22, 2000 9:40:16 PM)
But I thought the staff at the school were the experts. I didn't know I could or should get a second evaluation done privately.

Kate (ID=79) (Jun 22, 2000 9:40:28 PM)
But...even if he never wears it again, it has helped him see the difference in his hearing in the classroom.

debbie (ID=74) (Jun 22, 2000 9:40:44 PM)
Kate, the FM has been a big help for Sarah too

Tammy (ID=82) (Jun 22, 2000 9:40:48 PM)
the pencil grip is exactly what they gave cj...they even gave him two to bring home. generous of them, wasn't it!!!

ncz/Texas (ID=77) (Jun 22, 2000 9:41:20 PM)
Hey--you got more than I did?? I'm jealous!! NOT!!

Rose (ID=80) (Jun 22, 2000 9:41:51 PM)
ncz do you want to know what the school offered my son for his difficulty holding a pencil? They handed him the fat pencils used in kindergarten as if this would help, he could never hold them right either.

debbie (ID=74) (Jun 22, 2000 9:42:13 PM)
* i'm sitting here shaking my head in disbelief*

ncz/Texas (ID=77) (Jun 22, 2000 9:42:29 PM)
That's pathetic!

Tammy (ID=82) (Jun 22, 2000 9:42:48 PM)
they started cj with the fat pencils with the pencil grips...now he's using the thin pencils with the pencil grips. you figure it out....

Rose (ID=80) (Jun 22, 2000 9:42:52 PM)
the advocate has them doing an OT evaluation now.

Kate (ID=79) (Jun 22, 2000 9:43:07 PM)
Makes you realize the long road ahead, doesn't it??

Rose (ID=80) (Jun 22, 2000 9:43:18 PM)
But we are also going to have him tested privately to make sure the results are accurate.

debbie (ID=74) (Jun 22, 2000 9:43:24 PM)
I dread the beginning of each school year...

carol (ID=83) (Jun 22, 2000 9:43:33 PM)
who can you contact about getting an advocate for special ed? I know I need one but dont know where to start...

Tammy (ID=82) (Jun 22, 2000 9:43:38 PM)
they told us cj doesn't qualify for ot as he is "functional"---meaning he doesn't need help going to the bathroom...

Kate (ID=79) (Jun 22, 2000 9:43:39 PM)
Oh...me too Debbie!!!!

Rose (ID=80) (Jun 22, 2000 9:43:51 PM)
where are you located?

carol (ID=83) (Jun 22, 2000 9:43:58 PM)
wisconsin

debbie (ID=74) (Jun 22, 2000 9:44:24 PM)
we are in jax, florida

Tammy (ID=82) (Jun 22, 2000 9:44:25 PM)
is there any national network for advocates?

carol (ID=83) (Jun 22, 2000 9:44:44 PM)
i have a feeling i'm in for a big fight w/school district about placement for the fall..and i need to get all my ducks in a row so to speak

Rose (ID=80) (Jun 22, 2000 9:45:08 PM)
Amicus for Children is a PA based advocacy organization maybe they can refer you to someone in you area. Just type Amicus for Children into the computer and it will take you to the web page.

debbie (ID=74) (Jun 22, 2000 9:45:11 PM)
Tammy i have contacted several national advocate programs and found none wiht offices in jax that would help

carol (ID=83) (Jun 22, 2000 9:45:29 PM)
ok, thanks

Rose (ID=80) (Jun 22, 2000 9:46:04 PM)
Although they aren't local they may be willing to help make you a better advocate if you can't find anyone in your area.

debbie (ID=74) (Jun 22, 2000 9:46:38 PM)
i am so wound up about Sarah's reevaluation again tomorrow..im afraid it's going to really lead me to a fight with the school district ..

debbie (ID=74) (Jun 22, 2000 9:47:00 PM)
there is an online course about learning about the IDEA...have any of you seen it?

Tammy (ID=82) (Jun 22, 2000 9:47:04 PM)
you have an iep tomorrow?

Rose (ID=80) (Jun 22, 2000 9:47:16 PM)
It is a non profit organization started by two mothers of special needs children. One has a masters in education and the other is a lawyer.

Tammy (ID=82) (Jun 22, 2000 9:47:28 PM)
not me...

ncz/Texas (ID=77) (Jun 22, 2000 9:47:35 PM)
At my son;s IEP meeting the OT said that he needed a pencil grip called the bimbo. Everyone in the room laughed-except for my son's private Speech therapist and the District Council PTA president who was there helping me.

carol (ID=83) (Jun 22, 2000 9:47:55 PM)
i'm still waiting to hear from the spec ed office re: meeting for placement..i dread it, but i'm not willing to put my son in a class of over 20 children just because its his home school area...he would be lost

debbie (ID=74) (Jun 22, 2000 9:47:58 PM)
remember when we went to the U of F and had the capd eval done in may? we are redoing it tomorrow

Rose (ID=80) (Jun 22, 2000 9:48:00 PM)
the best place to go for information is wrightslaw

Rose (ID=80) (Jun 22, 2000 9:48:20 PM)
I think it is wrightslaw.com

Tammy (ID=82) (Jun 22, 2000 9:48:21 PM)
why are you doing it again?

carol (ID=83) (Jun 22, 2000 9:48:40 PM)
i've been there rose...helpful, but i still feel lost

debbie (ID=74) (Jun 22, 2000 9:49:04 PM)
there were reasons to question the last results..we want to make sure what we are looking at for her left ear

Rose (ID=80) (Jun 22, 2000 9:49:07 PM)
Its a start but can be hard to really interpret what it all means

ncz/Texas (ID=77) (Jun 22, 2000 9:49:28 PM)
I wish we could get wrightslaw to do some background research on CAPD.

Tammy (ID=82) (Jun 22, 2000 9:49:40 PM)
did i tell you that cj is going to see dr moncrieff on july 7th?

Don (ID=84) (Jun 22, 2000 9:49:52 PM)
(This user has entered CAPD: From the Heart)

debbie (ID=74) (Jun 22, 2000 9:49:56 PM)
no you didnt! that is who we are seeing tomorrow

Rose (ID=80) (Jun 22, 2000 9:49:59 PM)
Anyone who wants links to information resources e-mail me at mom4xovr@aol.com I have a ton .

debbie (ID=74) (Jun 22, 2000 9:50:00 PM)
hi Don..how are youtonight?

Kate (ID=79) (Jun 22, 2000 9:50:10 PM)
HI Don!

Don (ID=84) (Jun 22, 2000 9:50:13 PM)
we are doing fine =)

Don (ID=84) (Jun 22, 2000 9:50:28 PM)
just popped in to show him the room

debbie (ID=74) (Jun 22, 2000 9:50:50 PM)
the IDEA site i am talking about is like a workbook that you can print out and go though to learn everything from the history of the IDEA to what it says....

debbie (ID=74) (Jun 22, 2000 9:51:07 PM)
ok...don...who all is with you?

Don (ID=84) (Jun 22, 2000 9:51:16 PM)
Deb it's Penny

debbie (ID=74) (Jun 22, 2000 9:51:21 PM)
oh ok *L*

Rose (ID=80) (Jun 22, 2000 9:51:33 PM)
debbie I think I was there but didn't take the time to really get into it

debbie (ID=74) (Jun 22, 2000 9:51:33 PM)
hey don and Penny..wish robert happy birthday for us!

mlmom (ID=81) (Jun 22, 2000 9:51:39 PM)
Do you know the address of this IDEA site? It sounds very useful.

Don (ID=84) (Jun 22, 2000 9:51:44 PM)
we will

Tammy (ID=82) (Jun 22, 2000 9:51:51 PM)
i am so looking forward to talking with dr moncrieff...she told me she doesn't have any quick/pat answers but at least i'll have something else to back up patti's report.

Don (ID=84) (Jun 22, 2000 9:52:00 PM)
I just wanted to show him your site gotta run talk to you soon

debbie (ID=74) (Jun 22, 2000 9:52:23 PM)
if anyone is interested...we could arrange to do the workbook together....each person would be responsible for printing out their own books but we meet one night a week to go over a chapter

debbie (ID=74) (Jun 22, 2000 9:52:29 PM)
anyone interested???

Rose (ID=80) (Jun 22, 2000 9:52:31 PM)
tammy I would be really persistant about insisting they add all your childs diagnosis to his IEP even if they don't want to address those.

debbie (ID=74) (Jun 22, 2000 9:52:38 PM)
night you two!

Kate (ID=79) (Jun 22, 2000 9:52:50 PM)
Debbie, thats a great idea...count me in!!

Tammy (ID=82) (Jun 22, 2000 9:52:54 PM)
i'm hoping for some new information to help cj.

Tammy (ID=82) (Jun 22, 2000 9:53:03 PM)
yeah, count me in too.

debbie (ID=74) (Jun 22, 2000 9:53:04 PM)
let me get the site....

debbie (ID=74) (Jun 22, 2000 9:53:41 PM)
this is a training manual put out by the us dept of education

Rose (ID=80) (Jun 22, 2000 9:54:22 PM)
Whoever said they thought the schools had the experts and didn't realize that private testing was warranted, you must remember they are trying not to have to pay for services so the testing they do isn't always accurate.

debbie (ID=74) (Jun 22, 2000 9:54:38 PM)
anyone that is interested please email me and we'll set up our own training course

Kate (ID=79) (Jun 22, 2000 9:55:10 PM)
when do we start?

debbie (ID=74) (Jun 22, 2000 9:56:21 PM)
be right back..let me get the site..

Rose (ID=80) (Jun 22, 2000 9:56:31 PM)
It is biased and often they only test for things they address. An example is they don't want to provide my son with language therapy because according to their eligibility standards he isn't in need. But they don't look at processing problems at all.

ncz/Texas (ID=77) (Jun 22, 2000 9:56:34 PM)
Rose--and the children pay the price for these mistakes

Kate (ID=79) (Jun 22, 2000 9:57:03 PM)
Yes they do!!!

Rose (ID=80) (Jun 22, 2000 9:57:28 PM)
The tests they do are totally different ones than the ones that were done privately that indicated a need for therapy.

Tammy (ID=82) (Jun 22, 2000 9:57:37 PM)
cj is receiving articulation therapy twice a week...i keep telling them it isn't going to do him any good to know how to say the words if he doesn't understand what they mean...

mlmom (ID=81) (Jun 22, 2000 9:58:12 PM)
Rose, I am becoming more enlightened all the time. Thanks.

Kate (ID=79) (Jun 22, 2000 9:58:23 PM)
I feel like they cheated my son out of the last four years...because THAT's when we discovered the problem but according to them there WAS no problem!! In fact, I was told to medicate!!

Rose (ID=80) (Jun 22, 2000 9:58:26 PM)
I am currently trying to force them to provide services based solely on his needs and how this is effecting his ability to function in school and in other areas.

ELM (ID=85) (Jun 22, 2000 9:58:35 PM)
(This user has entered CAPD: From the Heart)

ncz/Texas (ID=77) (Jun 22, 2000 9:58:53 PM)
ritalin does not fix an auditory processing disorder

Kate (ID=79) (Jun 22, 2000 9:59:17 PM)
No but they think that will get you off their back!!

Marge (ID=86) (Jun 22, 2000 9:59:18 PM)
(This user has entered CAPD: From the Heart)

ncz/Texas (ID=77) (Jun 22, 2000 9:59:23 PM)
however, it does help attention problems

Rose (ID=80) (Jun 22, 2000 9:59:23 PM)
kate my son is on medication for ADHD which he also has. you can actually have both probleems at once.

Tammy (ID=82) (Jun 22, 2000 9:59:32 PM)
even his speech teacher (when we were separate from the group) told me that cj really needs at least two to three hours of intensive language therapy a week. but duval county doesn't have the resources to provide this for him.

mlmom (ID=81) (Jun 22, 2000 10:00:04 PM)
My school district would not repeat the testing until we did a trial of medication first!

debbie (ID=74) (Jun 22, 2000 10:00:07 PM)
i'm still looking! hi ELM

Marge (ID=86) (Jun 22, 2000 10:00:13 PM)
Wow! what a great crowd! Hi everyone! (I'll be back in hmm 10 mins... gotta get the kids in bed)

Tammy (ID=82) (Jun 22, 2000 10:00:16 PM)
that's exactly what they told us...the only way cj would qualify for services was if he had "attention problems".

ELM (ID=85) (Jun 22, 2000 10:00:17 PM)
hi everyone!

Rose (ID=80) (Jun 22, 2000 10:00:29 PM)
Tammy it really doesn't matter what they have available they are required to provide what your child needs even if it has to be paid for privately at their expense

Rose (ID=80) (Jun 22, 2000 10:01:10 PM)
I was against medication when my oldest son wwas first diagnosed with ADHD and avoided it for 4 years.

Kate (ID=79) (Jun 22, 2000 10:01:12 PM)
Yes I know and I don't mean to sound like I'm against medication but I'm very angry they advise that when they won't bother to educate themseves on auditory processing.

Tammy (ID=82) (Jun 22, 2000 10:01:20 PM)
i know that....the problem is getting them to admit it and getting them to provide the help before he graduates from high school in ten years!!!

debbie (ID=74) (Jun 22, 2000 10:01:26 PM)
ok..this is a training packet online through the US Department of Education....... the site is http://www.nichcy.org/Trainpkg/trainpkg.htm you have to download and print it

Rose (ID=80) (Jun 22, 2000 10:02:06 PM)
Hey kate they really aren't much more educated about ADHD. Too often they try to diagnose and label kids at school and many parents fall for it.

Kate (ID=79) (Jun 22, 2000 10:02:16 PM)
And that will come VERY quickly, Tammy!!

debbie (ID=74) (Jun 22, 2000 10:02:18 PM)
there are 14 modules all togethere

debbie (ID=74) (Jun 22, 2000 10:03:00 PM)
ELM is this your first time in the chat?

ELM (ID=85) (Jun 22, 2000 10:03:08 PM)
sorry to jump into the middle of this...tell me if I'm totally off base...we just did a trial of Adderall and BOY was it a disaster! The only thing my son seemed to pay any attention to at all were his own thoughts!

Rose (ID=80) (Jun 22, 2000 10:03:18 PM)
I found out when I finally did decide to try it at my sons begging for help that it was the best thing I could have ever done for him.

ELM (ID=85) (Jun 22, 2000 10:03:30 PM)
Yes, Debbie, it's my first time here...I'm on the CAPD list

debbie (ID=74) (Jun 22, 2000 10:03:39 PM)
well happy you could join us!!

ELM (ID=85) (Jun 22, 2000 10:03:52 PM)
thanks!

Tammy (ID=82) (Jun 22, 2000 10:03:55 PM)
rose, didn't you say your son has adhd as well as capd?

debbie (ID=74) (Jun 22, 2000 10:03:57 PM)
Sarah has never taken any medications..so i dont have any experience with them

ncz/Texas (ID=77) (Jun 22, 2000 10:03:58 PM)
Elm--how old is your son??

mlmom (ID=81) (Jun 22, 2000 10:04:03 PM)
Kate, that was my very same frustration. They automatically assume medication is the answere before trying to determine the exact problem. The medication didn't work by the way.

Rose (ID=80) (Jun 22, 2000 10:04:41 PM)
ELM you have to be certain that the diagnois of ADD/ADHD is accurate first. If you are sure it is than remember all children are different and a medication that works for one child may not work for another.

Tammy (ID=82) (Jun 22, 2000 10:05:10 PM)
cj doesn't have a problem paying attention...it's keeping his attention that's the problem...he's too easily distracted by all the sights and sounds around him...

Rose (ID=80) (Jun 22, 2000 10:05:29 PM)
tammy yes my 8 year old has both but my oldest was solely ADHD.

Kate (ID=79) (Jun 22, 2000 10:05:46 PM)
I have a son with asthma and he takes many daily medications so I'm not a foreigner to that BUT I'm not about to listen to someone that knows Nothing about CAPD advise me on medications!!!

mlmom (ID=81) (Jun 22, 2000 10:05:49 PM)
When we had an independent evaluation done, they ruled out ADD. Unfortunately, this was after 6 months on medication and another school year wasted.

ELM (ID=85) (Jun 22, 2000 10:05:52 PM)
Rose, I'm glad meds were the right thing for your son...yeah, it's so true...I guess what I'm trying to say is that it's scary business! (My son is 6, btw)

debbie (ID=74) (Jun 22, 2000 10:06:03 PM)
this information is from the site i was talking about .....................Note: This module is part of a training package on the IDEA Amendments of 1997, developed by the Office of Special Education Programs at the U.S. Department of Education, the National Information Center for Children and Youth with Disabilities (NICHCY), and the Federal Resource Center for Special Education (FRC). This information is copyright free. Readers are encouraged to copy and share it, but please credit the National Information Center for Children and Youth with Disabilities (NICHCY).

Rose (ID=80) (Jun 22, 2000 10:06:36 PM)
My oldest son did well on ritalin and my 8 year old did not. My 8 year old is doing better on adderall.

mlmom (ID=81) (Jun 22, 2000 10:06:41 PM)
Debbie, thank you so much.

Kate (ID=79) (Jun 22, 2000 10:07:06 PM)
Rose did the medication help the CAPD?

debbie (ID=74) (Jun 22, 2000 10:07:11 PM)
do the majority of you work during the day?

Tammy (ID=82) (Jun 22, 2000 10:07:22 PM)
i do...

Rose (ID=80) (Jun 22, 2000 10:07:25 PM)
I didn't start any of my children on medication until they were almost 8. i was worried about doing anything when they were younger.

mlmom (ID=81) (Jun 22, 2000 10:07:31 PM)
I work full-time.

mlmom (ID=81) (Jun 22, 2000 10:07:39 PM)
Days.

Rose (ID=80) (Jun 22, 2000 10:07:39 PM)
debbie I work at night like you do.

ELM (ID=85) (Jun 22, 2000 10:08:14 PM)
I'm not working (ok, those 3 kids sure feel like a lot of work tho!)

Kate (ID=79) (Jun 22, 2000 10:08:33 PM)
I hear THAT ELM!!!

Rose (ID=80) (Jun 22, 2000 10:08:41 PM)
No medication for ADHD will not help CAPD at all it only helps ADHD.

debbie (ID=74) (Jun 22, 2000 10:09:13 PM)
ELM i agree! I work nights, but sometimes the time with my kids makes me feel like i work alot harder!

ELM (ID=85) (Jun 22, 2000 10:09:19 PM)
Is that right, Rose? The neurologist convinced us that Adderall would help *auditory* attention

Kate (ID=79) (Jun 22, 2000 10:09:35 PM)
My son with the asthma has been on medication since he was 4 and I hate it!!!

Rose (ID=80) (Jun 22, 2000 10:09:36 PM)
He is full of it!

ELM (ID=85) (Jun 22, 2000 10:09:59 PM)
LOL, oh well, found that out the hard way!

mlmom (ID=81) (Jun 22, 2000 10:10:00 PM)
I believe that is why my daughter had no results on Adderall. Her disability is somewhere in the area of language processing ( CAPD eval. is upcoming but suspected).

debbie (ID=74) (Jun 22, 2000 10:10:13 PM)
Does everyone have access to a printer to download the material?

Rose (ID=80) (Jun 22, 2000 10:10:14 PM)
The neurologist was grasping at straws. He meant well but doesn't reallyunderstand CAPD.

Rose (ID=80) (Jun 22, 2000 10:10:40 PM)
Yes I do.

Tammy (ID=82) (Jun 22, 2000 10:10:43 PM)
sorry, but i have to go...have to put the kids to bed. good night everyone...

debbie (ID=74) (Jun 22, 2000 10:10:51 PM)
goodnight Tammy!

ELM (ID=85) (Jun 22, 2000 10:10:52 PM)
To give the dr credit, my son is a difficult case to dx...he's hearing impaired and has some features of Aspergers as well

Kate (ID=79) (Jun 22, 2000 10:10:55 PM)
See...that's what is SOOO scary to me about medication...NO ONE is sure!!!

Rose (ID=80) (Jun 22, 2000 10:10:58 PM)
good night Tammy!

ELM (ID=85) (Jun 22, 2000 10:11:00 PM)
goodnight Tammy

Kate (ID=79) (Jun 22, 2000 10:11:56 PM)
Sorry about the sidetrack Debbie...yes I have a printer

debbie (ID=74) (Jun 22, 2000 10:12:08 PM)
Would you all like to try and start this next week or the week after?

Rose (ID=80) (Jun 22, 2000 10:12:41 PM)
ELm my son has multiple problems we are only beginning to get hte whole picture. So far we know he is ADHD,CAPD, Dyslexic, has mild cognitive inefficiency with a language based learning disability and an above average intelligence. SID is also suspected and is currently being investigated.

ELM (ID=85) (Jun 22, 2000 10:12:45 PM)
sorry Debbie, start what?

ELM (ID=85) (Jun 22, 2000 10:13:23 PM)
yeah, I understand, Rose...cognitive inefficiency, I like that term.

Rose (ID=80) (Jun 22, 2000 10:13:26 PM)
debbie I would love to but can't be certain I can fit it into my already busy schedule.

debbie (ID=74) (Jun 22, 2000 10:13:51 PM)
what we are talking about ELM is that there is a traning manual on line about the IDEA...so many of us want to learn more about advocacy or are at least in the position we need to so we are thinking about doing the manual as a group....

Kate (ID=79) (Jun 22, 2000 10:13:56 PM)
Debbie, how long do you think it would take?

ELM (ID=85) (Jun 22, 2000 10:14:01 PM)
I just found a private school that takes bright kids with learning differences...sounds like a godsend!

ELM (ID=85) (Jun 22, 2000 10:14:37 PM)
oh, wow! I just hired an advocate because it was that or give up, LOL...sounds like I could use that chat!

debbie (ID=74) (Jun 22, 2000 10:14:48 PM)
the website for the online manual is http://www.nichcy.org/Trainpkg/trainpkg.htm

Rose (ID=80) (Jun 22, 2000 10:14:52 PM)
All of his problems are with processing information. I forgot to mention he also has visual perception problems.

debbie (ID=74) (Jun 22, 2000 10:15:11 PM)
im not a trained advocate but i sure want to learn..sometimes its easier to learn together

mlmom (ID=81) (Jun 22, 2000 10:15:13 PM)
I am interested in the group training too.

ELM (ID=85) (Jun 22, 2000 10:15:37 PM)
Rose, how old is your son?

Rose (ID=80) (Jun 22, 2000 10:16:08 PM)
ELM where are you from? Did you have to pay your advocate? i was wondering since you said hired.

debbie (ID=74) (Jun 22, 2000 10:16:18 PM)
if you are interested and not on the email list for this site, please join! I"ll put out information on there about putting together traning chats....

ncz/Texas (ID=77) (Jun 22, 2000 10:16:37 PM)
SORRY OFF TOPIC Debbie--they are really dragging on with Graham's execution. What a big mess Texas has just started!!

ELM (ID=85) (Jun 22, 2000 10:17:02 PM)
Yeah, she was recommended to me by a friend. She's on a sliding scale. Really hit it off with her, and what a beautiful thing it is! I slept for the first time in weeks after meeting with her!

ELM (ID=85) (Jun 22, 2000 10:17:09 PM)
(I'm in NJ)

debbie (ID=74) (Jun 22, 2000 10:17:19 PM)
ncz...the execution is over!

ncz/Texas (ID=77) (Jun 22, 2000 10:17:33 PM)
ELM--SORRY-how old is your son.

ELM (ID=85) (Jun 22, 2000 10:17:39 PM)
he's 6

ncz/Texas (ID=77) (Jun 22, 2000 10:17:46 PM)
Yes Debbie--it's over!

debbie (ID=74) (Jun 22, 2000 10:17:52 PM)
was executed at 8:40 Central time

Rose (ID=80) (Jun 22, 2000 10:17:53 PM)
ELM i found an advocacy group based in PA that is totally free. She wouldn't even let me pay for tolls or lunch.

ELM (ID=85) (Jun 22, 2000 10:18:04 PM)
gotta love that!

ELM (ID=85) (Jun 22, 2000 10:18:19 PM)
I'm moving to the Princeton area in the next month or so...where in PA are you?

debbie (ID=74) (Jun 22, 2000 10:19:09 PM)
i hate to cut out early tonight, but i have to be up early for the evaluation for sarah tomorrow...we have to be on the road about 6:30

ELM (ID=85) (Jun 22, 2000 10:19:25 PM)
Thanks Debbie, good luck!

Rose (ID=80) (Jun 22, 2000 10:19:42 PM)
Philadelphia the advocacy group is called Amicus for children and you can check out their web page if you type it into the computer and search. I don't have the address to the page handy at the moment.

Rose (ID=80) (Jun 22, 2000 10:19:53 PM)
Good night Debbie

Kate (ID=79) (Jun 22, 2000 10:19:56 PM)
Debbie, Good Luck with the re-eval. Let me know what you decide about the IDEA program. Night all!

debbie (ID=74) (Jun 22, 2000 10:20:01 PM)
thank you... i'll let you all know how it goes

ELM (ID=85) (Jun 22, 2000 10:20:24 PM)
gee, I've never done this before...do we all leave now?

Rose (ID=80) (Jun 22, 2000 10:20:46 PM)
They aren't located in Philadelphia though and she was more than willing to travel to my location , she was a godsend.

Rose (ID=80) (Jun 22, 2000 10:21:17 PM)
Not if you want to stay, we can all still talk.

debbie (ID=74) (Jun 22, 2000 10:22:12 PM)
ELM i'm sorry for cutting out tonight..the chat is open at all times...anyone who wants to stay can..i usually try to be the last to go..but i have that eval tomorrow and am wiped

debbie (ID=74) (Jun 22, 2000 10:22:22 PM)
(it's about 1 1/2 hour to 2 hour drive)

ELM (ID=85) (Jun 22, 2000 10:22:34 PM)
wow, that sounds great! This woman is far from free, . I'm trying to get him an aide for next year just in case the sped school doens't pan out. They recommended sped for several subjects and reg ed for the rest and proposed phasing him into mainstream as the year progressed...but no aide. So what's the likelihood that that will work?

ncz/Texas (ID=77) (Jun 22, 2000 10:22:42 PM)
GOOD LUCK DEBBIE

ncz/Texas (ID=77) (Jun 22, 2000 10:22:55 PM)
bye

debbie (ID=74) (Jun 22, 2000 10:23:12 PM)
thanks all!!!! *HUGS* to all....and if i haven't told you all how happy i am to have met you all...thank you for all your support!!!!

Rose (ID=80) (Jun 22, 2000 10:23:22 PM)
I'm not sure, we are still working out a bunch of stuff witrh the school.

mlmom (ID=87) (Jun 22, 2000 10:23:22 PM)
(This user has entered CAPD: From the Heart)

debbie (ID=74) (Jun 22, 2000 10:23:27 PM)
you are the best!

ELM (ID=85) (Jun 22, 2000 10:23:42 PM)
thank YOU Debbie...I'm so glad to have finally remembered to stop in!

Rose (ID=80) (Jun 22, 2000 10:23:59 PM)
An aide is one possibility for next year for us also, of course the school really doesn't want to provide it.

debbie (ID=74) (Jun 22, 2000 10:24:02 PM)
night night

ELM (ID=85) (Jun 22, 2000 10:24:18 PM)
What sorts of issues are you having trouble resolving?

Rose (ID=80) (Jun 22, 2000 10:25:21 PM)
First we are applying for wrap around services for my son. They may give his a TSS(not exactly sure what it stants for), but this person would be able to go to school with him and the school doesn't have to pay for it.

ELM (ID=85) (Jun 22, 2000 10:25:37 PM)
Thanks for the link to Amicus! How old did you say your son is?

mlmom (ID=87) (Jun 22, 2000 10:25:48 PM)
I just wanted to say good night all. And let Debbie know that I joined the mailing list. Guess I missed her. Good night!

Rose (ID=80) (Jun 22, 2000 10:26:08 PM)
8

ELM (ID=85) (Jun 22, 2000 10:26:18 PM)
wrap around...is that like extended school year?

ELM (ID=85) (Jun 22, 2000 10:26:28 PM)
good night mlmom!

Rose (ID=80) (Jun 22, 2000 10:28:22 PM)
It really is a long story, but I tried to tell the school my son was having problems from kindergaten. Nothing was done and then in first grade his teacher agreed he was struggling , her solution was for us to retain him.( even though he didn't fail) I argued and forced testing, then they tried to force me to place him in special ed. I wouldn't and took my son for private testing.

Marge (ID=86) (Jun 22, 2000 10:28:36 PM)
(i'm back)

ELM (ID=85) (Jun 22, 2000 10:29:42 PM)
and then?

Rose (ID=80) (Jun 22, 2000 10:29:52 PM)
No wrap around is medical insurance you get through welfare to cover expenses your insurance doesn't cover. Children with disabilities are eligible regardless of parents income and our kids get special services.

Marge (ID=86) (Jun 22, 2000 10:30:19 PM)
rose: is wrap around a state or federal thing??

ELM (ID=85) (Jun 22, 2000 10:30:23 PM)
OH! I should look into that!

Marge (ID=86) (Jun 22, 2000 10:31:13 PM)
we have something here called the "katie beckett waiver" that is like that. not sure if state or federal. but income somehow plays a role in getting it. helps middle income families, mostly, from what i know.

ELM (ID=85) (Jun 22, 2000 10:31:35 PM)
whare are you, Marge?

Marge (ID=86) (Jun 22, 2000 10:31:39 PM)
georgia

Rose (ID=80) (Jun 22, 2000 10:31:47 PM)
They finally agreed to try resource room and we were to reevaluate the placement in June. We met in late May and it was the same old Bull. I ended up delaying the meeting until June when my advocate could come.

ELM (ID=85) (Jun 22, 2000 10:31:55 PM)
you aren't Marge the audiologist, are you?

Marge (ID=86) (Jun 22, 2000 10:32:12 PM)
hahah! i'm marge the engineer who can *sound* like an audiologist

ELM (ID=85) (Jun 22, 2000 10:32:18 PM)
LOL!

Marge (ID=86) (Jun 22, 2000 10:32:35 PM)
i speak geek, what can i say ;-)

ELM (ID=85) (Jun 22, 2000 10:32:44 PM)
ok, lucky for you, because I have some questions for Marge the audiologist, LOL!

Marge (ID=86) (Jun 22, 2000 10:33:07 PM)
um, lemme look around & see if she's here somewhere, ELM. maybe hiding under the desk?? haha

Rose (ID=80) (Jun 22, 2000 10:33:25 PM)
I'm not exactly sure if it is state of federal but I would think it is federal. It is like SSI but it isn't based on the parents income like the money you get when on SSI.

Marge (ID=86) (Jun 22, 2000 10:33:28 PM)
rose: so did the meeting with the advocate happen?

ELM (ID=85) (Jun 22, 2000 10:33:32 PM)
oh, so he's in 1st now?

Marge (ID=86) (Jun 22, 2000 10:33:53 PM)
rose: you are in pennsylvania or washington state?

Rose (ID=80) (Jun 22, 2000 10:34:31 PM)
The advocate got them to add all of his current diagnosis and completely rewrite his IEP to include measureable goals. They are now doing tons of testing to comlply with her requests. They also agreed he was eligible for ESY and will be going to school this summer.

ELM (ID=85) (Jun 22, 2000 10:34:33 PM)
yeah, Marge, if you find her let me know, LOL

Rose (ID=80) (Jun 22, 2000 10:34:38 PM)
PA

ELM (ID=85) (Jun 22, 2000 10:34:52 PM)
measurable goals, what are they, LOL?

Marge (ID=86) (Jun 22, 2000 10:35:03 PM)
a rose by any other name might smell as sweet, but i don't want this to be a case of mistaken identity

Rose (ID=80) (Jun 22, 2000 10:35:29 PM)
Nope he just finished second grade with only resource room for reading. he will be going to third grade this year.

Marge (ID=86) (Jun 22, 2000 10:35:40 PM)
rose: wow!! a real win for you then, that is great! did this advocate come in wearing a suit of armor & breathing fire, or what, that they were so, um, accommodating?

ELM (ID=85) (Jun 22, 2000 10:35:46 PM)
I've been told that walking through the door with an advocate immediately changes the picture. No longer does the team sit there and stare at you blankly when make requests.

ELM (ID=85) (Jun 22, 2000 10:36:58 PM)
That sounds great...how has it been with the team, is it adversarial or are you all on the same page now?

Rose (ID=80) (Jun 22, 2000 10:37:28 PM)
No I actually send her all correspondence and paperwork from his testing asnd school. She reviewed it all and I told her what I wanted. She was able to determine all the mistakes they made and call them on it. She knows the laws and how all this is really suppose to work.They were actually visibly shaking she had them so nervous.

Marge (ID=86) (Jun 22, 2000 10:37:46 PM)
ELM: if you've got audiology questions, i'll do what i can to answer them.

ELM (ID=85) (Jun 22, 2000 10:37:55 PM)
Oh what a beautiful thing, LOL

Rose (ID=80) (Jun 22, 2000 10:38:14 PM)
She brings in a laptop computer and takes notes on the meeting too.

Marge (ID=86) (Jun 22, 2000 10:38:17 PM)
rose: wow, really, that is great!! is she a lawyer or a paralegal or what??

Rose (ID=80) (Jun 22, 2000 10:39:33 PM)
She is actaully just a mom witrh a special needs child, she has a masters in education and she joined up with another nmother who happens to be a lawyer. They started the non profit group AMICUS FOR cHILDREN TO HELP OTHER PARENTS.

ELM (ID=85) (Jun 22, 2000 10:40:12 PM)
well, Marge, I think you missed when I said my son's hearing impaired. I've been struggling to get someone to do CAP testing. People keep asking me how I know he's got auditory processing problems apart from his hearing loss...it's very simple...he just doesn't understand much of what's said to him even though his hearing is well within normal limits with aids. So my question is...why is it so hard to test a hearing impaired kid, and what should I expect from the audiologist I just cornered and coerced into doing it?

Marge (ID=86) (Jun 22, 2000 10:40:14 PM)
rose: that is fantastic. if i were wealthy, i'd write them a check to support their work

ELM (ID=85) (Jun 22, 2000 10:40:45 PM)
how DO they get funded?

Marge (ID=86) (Jun 22, 2000 10:41:09 PM)
ELM: hahah! ok, bear in mind that you are truly asking a hard thing, because nearly all the CAP tests are assume the child has normal hearing.

Rose (ID=80) (Jun 22, 2000 10:41:24 PM)
I really have no idea its a good question. For all I know they are putting the expenses out of their own pocket.

ELM (ID=85) (Jun 22, 2000 10:41:28 PM)
oh sure, you're laughing

Marge (ID=86) (Jun 22, 2000 10:42:07 PM)
ELM : but there are a few CAP tests he might be able to take. how severe is his unaided loss?

ELM (ID=85) (Jun 22, 2000 10:42:18 PM)
I've been thinking a lot lately about how to reach parents of recently dx'd kids *before* they make that first fateful call to the director of sped.

Rose (ID=80) (Jun 22, 2000 10:42:33 PM)
Shouldn't it make no differnce that her child is hearing impaired if they can correct the hearing to within normal limits with aids?

ELM (ID=85) (Jun 22, 2000 10:42:47 PM)
mild to moderate, basically a flat loss but slopes off quickly at high frequency

Marge (ID=86) (Jun 22, 2000 10:42:58 PM)
moving the thresholds into normal limits with aids IS NOT the same thing as having normal thresholds

ELM (ID=85) (Jun 22, 2000 10:43:20 PM)
I'm wondering if the tests are done with earphones and he couldn't wear his aids

Marge (ID=86) (Jun 22, 2000 10:43:25 PM)
there is a lot more to hearing loss than just a reduction in perceived loudness at different frequencies

ELM (ID=85) (Jun 22, 2000 10:43:48 PM)
uh oh, baby's calling, brb!

Marge (ID=86) (Jun 22, 2000 10:44:10 PM)
impaired ears often lack the fine tuning of normal ears... even if you shift the thresholds to normal range, you still don't have that fine pitch discrimination.

Rose (ID=80) (Jun 22, 2000 10:44:19 PM)
Okay what do you think about testing a child for CAPD who is also ADHD? or has other LD's how does this effect your test results?

Marge (ID=86) (Jun 22, 2000 10:44:32 PM)
many many folks just assume that hearing aids are like glasses for the ears. not even close.

Marge (ID=86) (Jun 22, 2000 10:45:14 PM)
i don't know enough about ADHD to know what sorts of effects that would have on CAPD scores, but

Rose (ID=80) (Jun 22, 2000 10:45:49 PM)
My son wears glasses to correct visual accuity but still has visual percetion problems. Wouldn't it then make it possible to have a hearing loss and CAPD?

Marge (ID=86) (Jun 22, 2000 10:45:53 PM)
a full CAP battery can take a couple of hours to administer. if you have a child that is having trouble paying attention during such a lengthy session, you might get artificially low cap scores.

Marge (ID=86) (Jun 22, 2000 10:46:30 PM)
rose: yes, it is completely possible to have hearing loss AND capd... but separating out the problems caused by the hearing loss & the hearing aids from the central auditory factors is very tricky

Rose (ID=80) (Jun 22, 2000 10:46:32 PM)
Marge they stated that with his medication that they felt the test results were accurate.

Rose (ID=80) (Jun 22, 2000 10:47:00 PM)
He was very cooperative dring his testing.

Marge (ID=86) (Jun 22, 2000 10:47:02 PM)
what attentional tests did they run on him while medicated to ensure that his attentional skills were adequate for the capd test?

Marge (ID=86) (Jun 22, 2000 10:47:33 PM)
i can tell you as an adult who's had many, many capd tests, that even if you are cooperative, it is fatiguing

Rose (ID=80) (Jun 22, 2000 10:47:43 PM)
I have no idea. all I know is that he was attentive during testing and cooperative.

Rose (ID=80) (Jun 22, 2000 10:48:03 PM)
he was very exhausted by the time testing was over.

Marge (ID=86) (Jun 22, 2000 10:48:46 PM)
that is encouraging that he was attentive & cooperative, but a subjective judgement like that is no substitute for finding out if his ADHD meds are *really* controlling him well enough that he can withstand the capd tests... if you are tired, you'll get artificially poor scores.

Rose (ID=80) (Jun 22, 2000 10:49:05 PM)
He did fine on all tests except the except for the SSW test

Marge (ID=86) (Jun 22, 2000 10:49:40 PM)
on the other hand, exhaustion at the end of a 2 hr test session tells you important things about how tired he must be at school when he's dealing with new material.

Marge (ID=86) (Jun 22, 2000 10:50:05 PM)
i don't know enough about the SSW specifically to tell you what the pitfalls would be for doing that test on a child with ADHD

Marge (ID=86) (Jun 22, 2000 10:50:28 PM)
wish i did, smile!

Marge (ID=86) (Jun 22, 2000 10:51:06 PM)
did they do other tests of "binaural fusion" to confirm the SSW result, perhaps at a later test session?

Rose (ID=80) (Jun 22, 2000 10:51:37 PM)
Well it explains the Staggered Sporadaic Word Test(SSW) as testing a variety of skills simutaneously.

Marge (ID=86) (Jun 22, 2000 10:52:40 PM)
spondaic words... things like baseball, hotdog, sandbox. 2 syllable words with equal stress on each syllable.

ELM (ID=85) (Jun 22, 2000 10:53:00 PM)
(sorry to run out...I'm back)

Marge (ID=86) (Jun 22, 2000 10:53:21 PM)
hi ELM! you were wondering if they can do cap tests in a soundfield with his aids in. the answer is no.

Rose (ID=80) (Jun 22, 2000 10:53:40 PM)
short term memory skills, decoding skills, auditory-visual integration skills, and organization skills. ?Supposively the classroom environment tasks the central auditory proceesing skills in the same manner.

Marge (ID=86) (Jun 22, 2000 10:53:56 PM)
the reason the answer is "no" is because central auditory processes have so many binaural components: measuring both ears working together

Marge (ID=86) (Jun 22, 2000 10:54:38 PM)
elm: so you need to have a separate signal into each ear. tho' is suppose they could run the signals into his hearing aids directly with DAI, if he has DAI capable aids.

ELM (ID=85) (Jun 22, 2000 10:55:47 PM)
I'm not sure about that, but he does have an FM...i wonder if that could help

Rose (ID=80) (Jun 22, 2000 10:56:02 PM)
Yes they use two words(ie. hotdog, icecream) they present one word to each ear. The middle two words get presented simutaneously(ie. dog, ice) they ask that all words be repeated back.

Marge (ID=86) (Jun 22, 2000 10:56:04 PM)
rose: so potentially he could have a problem with short term memory OR decoding OR auditory/visual integration OR organization OR any or all of the above, and still get a poor score on the SSW... I think you can see why you can't rely on that single test score to make the CAPD diagnosis.

Marge (ID=86) (Jun 22, 2000 10:56:21 PM)
rose: did they run dichotic digits?

Marge (ID=86) (Jun 22, 2000 10:56:40 PM)
elm: oh, for SURE the FM plus hearing aids is the way to go for a kid with a hearing loss in a classroom situation

ELM (ID=85) (Jun 22, 2000 10:57:09 PM)
the thing I'm worried about is that I *finally* found someone who would do the testing and I told her that I was concerned because he's not terribly cooperative in *life* much less for such fatiguing tests and she said it's really not so difficult...I was very surprised.

Rose (ID=80) (Jun 22, 2000 10:57:51 PM)
Well they give reaults for each area of difficulty. My son's was with short term memory, auditory figure ground skills, and decoding skills

Marge (ID=86) (Jun 22, 2000 10:57:55 PM)
elm: she means the tests are really not so difficult? or it is not so difficult to separate central from peripheral factors with capd tests?

ELM (ID=85) (Jun 22, 2000 10:58:00 PM)
I mean, I wonder if there's some way to do the tests using the FM. I have to tell you, the funny thing about the FM is that he's gotten used to it and now tunes that out as well.

Marge (ID=86) (Jun 22, 2000 10:58:22 PM)
rose: when did they run the SSW? early in the test session or later?

ELM (ID=85) (Jun 22, 2000 10:58:31 PM)
she means the tests are not really that difficult...not what I've heard!

Marge (ID=86) (Jun 22, 2000 10:58:45 PM)
ELM: for a normal hearing person, the tests are a cinch. my audiologist told me.

ELM (ID=85) (Jun 22, 2000 10:58:57 PM)
oh really???

ELM (ID=85) (Jun 22, 2000 10:59:05 PM)
that's very interesting!

Rose (ID=80) (Jun 22, 2000 10:59:16 PM)
then it gives results for each ear. right and left. He has problems with both but worse in the right ear.

Marge (ID=86) (Jun 22, 2000 10:59:26 PM)
elm: my oldest daughter & I have had some pretty thorough workups, and we both have auditory problems, and we are ready for a full body massage and a nap after we're done with our testing.

ELM (ID=85) (Jun 22, 2000 10:59:45 PM)
why? what's it all about? why's it so hard???

ELM (ID=85) (Jun 22, 2000 11:00:12 PM)
when did you find out you had auditory problems?

Rose (ID=80) (Jun 22, 2000 11:00:14 PM)
I don't know for sure but think she did all the regular hearing tests first then the SSW next

Marge (ID=86) (Jun 22, 2000 11:00:38 PM)
elm: cuz we're having to work so hard to use the cues we use for ordinary hearing situations in a test which has been deliberately set up to make it hard to use those skills.

ELM (ID=85) (Jun 22, 2000 11:00:50 PM)
how do they do the SSW, one half of each word to each ear?

Rose (ID=80) (Jun 22, 2000 11:00:52 PM)
Other tests followed all with results being normal.

Marge (ID=86) (Jun 22, 2000 11:01:22 PM)
i found out in 1991. have had more extensive tests in 1996 and 1998. get lots of weird results, but nothing that fits the textbook descriptions perfectly.

ELM (ID=85) (Jun 22, 2000 11:01:52 PM)
oh, believe me, Marge, I understand the effects, I live with them every day, LOL...but in what way are the tests difficult? I guess what I'm asking is what are the tests that are difficult, what is the task?

Rose (ID=80) (Jun 22, 2000 11:02:12 PM)
they present ice to right ear and as they say cream in right ear they begin hot in the left so both words are said at the same time, them they complete the word with dog in the left ear

Marge (ID=86) (Jun 22, 2000 11:02:25 PM)
elm: in your son's case, with the high frequency loss, EVEN WITH THE AIDS, he probably has trouble hearing the difference between "s" and "sh".

Marge (ID=86) (Jun 22, 2000 11:02:43 PM)
rose: so the goof they're looking for is someone saying "ice dog" or "hot cream"

Rose (ID=80) (Jun 22, 2000 11:03:11 PM)
not really they want to see if they can hear all four words

ELM (ID=85) (Jun 22, 2000 11:03:27 PM)
he was dx'd when he was over 3...had excellent speech and lip reading skills...never had that tell-tale /s/ problem

Marge (ID=86) (Jun 22, 2000 11:03:40 PM)
no, you can't do CAPD tests thru the FM, cuz the same signal gets routed to both ears.

ELM (ID=85) (Jun 22, 2000 11:03:59 PM)
yeah, LOL, after I said it I realized...no sleep for me lately ;-)

Rose (ID=80) (Jun 22, 2000 11:04:06 PM)
my son has no hearing loss but can't relly distinguish between many sounds

Marge (ID=86) (Jun 22, 2000 11:04:09 PM)
elm: no problem

ELM (ID=85) (Jun 22, 2000 11:04:24 PM)
oh, I think he's going to be on the floor refusing to do these tests in about 3 minutes

Marge (ID=86) (Jun 22, 2000 11:04:39 PM)
rose: same here. my hearing & my oldest dau's hearing is within normal limits, but we have a lot of trouble distinguishing consonants

Rose (ID=80) (Jun 22, 2000 11:04:57 PM)
he thought TRIP was CHRIP, he thought DROVE was GROVE

Marge (ID=86) (Jun 22, 2000 11:05:52 PM)
the tests are hard because you can't lipread, for one thing. and if you actually hear "chrip", and you are me or my daughter, you are going thru the mental rolodex & finding the most likely match, which would be "trip"

Rose (ID=80) (Jun 22, 2000 11:06:00 PM)
I couldn't even tell he was mispronouncing the words until he wrote them wrong and I got close to him and asked him to say the word.

Marge (ID=86) (Jun 22, 2000 11:06:29 PM)
tiring mostly because you are guessing at what you really don't hear.

Rose (ID=80) (Jun 22, 2000 11:06:40 PM)
It was then when I knew there was some kind of problem with his hearing

ELM (ID=85) (Jun 22, 2000 11:07:09 PM)
he never had a problem until he started to realize that what he heard (or didn't hear) was different for him than for everyone else...then the behavior problems started!

Marge (ID=86) (Jun 22, 2000 11:07:33 PM)
rose: i've seen that with one of my other daughters too. she heard "violin" as "biolin"

ELM (ID=85) (Jun 22, 2000 11:07:38 PM)
how old was he then, Rose? I guess old enough to be spelling

Rose (ID=80) (Jun 22, 2000 11:07:47 PM)
He has no idea of the difference in vowel sounds at all

ELM (ID=85) (Jun 22, 2000 11:07:57 PM)
have you done earobics?

Rose (ID=80) (Jun 22, 2000 11:07:58 PM)
1st grade

Marge (ID=86) (Jun 22, 2000 11:08:28 PM)
elm: reassure your son that there are many, many kids who have the same kinds of problems. have you considered sending him to a camp for hearing impaired kids?

Marge (ID=86) (Jun 22, 2000 11:08:38 PM)
no, haven't done earobics or ffwd.

Rose (ID=80) (Jun 22, 2000 11:08:39 PM)
Not yet but the school is evaluating him for the program they use, they don't use earbotics or fast forward.

Marge (ID=86) (Jun 22, 2000 11:09:02 PM)
i use lipreading & FM systems very very extensively

Rose (ID=80) (Jun 22, 2000 11:09:20 PM)
listen gang I really have to run its late and my hubby needs attention lol

Marge (ID=86) (Jun 22, 2000 11:09:30 PM)
gnite rose, nice chatting with you

Rose (ID=80) (Jun 22, 2000 11:09:44 PM)
the kids seem to take up all my time and he feels neglected

ELM (ID=85) (Jun 22, 2000 11:09:49 PM)
he went to a *school* for hearing impaired kids for 2 years! The funny thing is, he seemed so out of place. He was by far the most advanced in all language areas. We all agreed that he didn't belong there. That's one of the reasons I'm convinced his problems go beyond peripheral hearing

Marge (ID=86) (Jun 22, 2000 11:10:20 PM)
elm: hmm, he probably had a very mild loss compared to the other kids at the school, tho'

ELM (ID=85) (Jun 22, 2000 11:10:24 PM)
gnite Rose! Best of luck to you, I hope to chat again!

Rose (ID=80) (Jun 22, 2000 11:10:33 PM)
Nite It was nice meeting you feel free to im or e-mail me at mom4xovr@aol.com anytime

ELM (ID=85) (Jun 22, 2000 11:10:38 PM)
Thanks for the advocate link!

Marge (ID=86) (Jun 22, 2000 11:10:42 PM)
so his language development would've been way ahead of the severe/profound kids

Rose (ID=80) (Jun 22, 2000 11:10:48 PM)
anytime

ELM (ID=85) (Jun 22, 2000 11:11:25 PM)
yeah, he was in the oral class...most kids were cochlear kids

Marge (ID=86) (Jun 22, 2000 11:11:27 PM)
frankly, from what you've described so far, it all seems pretty consistent with a high freq loss, from what i understand

Marge (ID=86) (Jun 22, 2000 11:11:53 PM)
elm: oh, that is a huge difference... and he would've had a hard time fitting in with them, i would imagine

Marge (ID=86) (Jun 22, 2000 11:12:15 PM)
are there other hearing impaired kids mainstreamed at his school?

ELM (ID=85) (Jun 22, 2000 11:12:30 PM)
it's so frustrating for all of us...he just doesnt understand what people are saying. he watches the same videos over and over and doesn't understand what they're saying. he asks me to define such simple words all the time.

Marge (ID=86) (Jun 22, 2000 11:12:42 PM)
do you use captioned videos?

Marge (ID=86) (Jun 22, 2000 11:13:14 PM)
do you use the FM or an infrared listening system so he can listen thru his hearing aids to the video?

ELM (ID=85) (Jun 22, 2000 11:13:21 PM)
well, it was preschool, he just loved the fact that everyone wore hearing aids. now nobody does. no, there are no hearing impaired kids in the school. his sped teacher had never even worked with any.

ELM (ID=85) (Jun 22, 2000 11:13:45 PM)
he's in Kindergarten and is not reading yet so I'm holding my breath on captioning!

Marge (ID=86) (Jun 22, 2000 11:13:50 PM)
hoo boy, that is no fun.

Marge (ID=86) (Jun 22, 2000 11:14:07 PM)
ok, do you know what i'm talking about when i say an infrared TV listening system?

ELM (ID=85) (Jun 22, 2000 11:14:45 PM)
the funny thing is, the school system he was in is a fabulous system...they have a reg ed classroom with a handful of oral HI kids and a teacher of the deaf...but we still thought he didn't need it.

ELM (ID=85) (Jun 22, 2000 11:14:51 PM)
yes

Marge (ID=86) (Jun 22, 2000 11:15:19 PM)
the listening systems aren't too dreadfully expensive. see if that helps with the videos.

ELM (ID=85) (Jun 22, 2000 11:15:24 PM)
we've had trouble getting him to try to use systems other than his hearing aids

ELM (ID=85) (Jun 22, 2000 11:15:44 PM)
can't be more than the FM we bought for $5K

Marge (ID=86) (Jun 22, 2000 11:15:59 PM)
$5000!!!!!!! how on EARTH did it cost that much????

ELM (ID=85) (Jun 22, 2000 11:16:26 PM)
so when you say his issues sound consistent with high frequency loss, what are you referring to?

Marge (ID=86) (Jun 22, 2000 11:16:51 PM)
well, not understanding what's said to him on a video, or in a classroom situation.

ELM (ID=85) (Jun 22, 2000 11:16:53 PM)
it's the Phonak Microlink...very proprietary...very cool...very wireless and unobtrusive

Marge (ID=86) (Jun 22, 2000 11:17:29 PM)
oh, ok, now i understand. yes, the microlink was the first onboard FM system for hearing aids.

ELM (ID=85) (Jun 22, 2000 11:17:55 PM)
there are so many times that my 3yo (with VERY clear speech) has been talking to him and I've been reminding him to answer her and he finally screams, "I don't understand her!!!!!" It breaks my heart

Marge (ID=86) (Jun 22, 2000 11:18:02 PM)
ok, what you can do is wire the FM transmitter into the TV audio output. Sometimes there's some interference

Marge (ID=86) (Jun 22, 2000 11:18:44 PM)
yeah, that's a tough one. i have a lot of trouble hearing little kids too, enough that i don't volunteer much in my kids classrooms. all those high pitch voices!

ELM (ID=85) (Jun 22, 2000 11:18:57 PM)
we've tried just setting it up next to the speaker. it helps, but it's so weird...he doesn't seem to understand that he should be able to understand what they're saying...he seems to think it's ok for most of it to be gibberish

Marge (ID=86) (Jun 22, 2000 11:19:04 PM)
but with the microlink, you probably won't get interference cuz its such a high frequency

ELM (ID=85) (Jun 22, 2000 11:19:20 PM)
jeez, I never thought about that!

ELM (ID=85) (Jun 22, 2000 11:19:35 PM)
high pitched voices...hmmm

Marge (ID=86) (Jun 22, 2000 11:19:36 PM)
how bad is his high freq hearing? what freq does it start to drop off at?

ELM (ID=85) (Jun 22, 2000 11:19:41 PM)
70db

ELM (ID=85) (Jun 22, 2000 11:19:45 PM)
at 8000

Marge (ID=86) (Jun 22, 2000 11:19:51 PM)
yeah, even clear, high pitched voices are tough for me.

ELM (ID=85) (Jun 22, 2000 11:19:55 PM)
if I recall correctly

ELM (ID=85) (Jun 22, 2000 11:20:16 PM)
wow...but aided he's no lower than 15db

ELM (ID=85) (Jun 22, 2000 11:20:25 PM)
so I assumed all was right, LOL

ELM (ID=85) (Jun 22, 2000 11:20:49 PM)
do you have trouble on the phone? that's a major struggle for him

Marge (ID=86) (Jun 22, 2000 11:20:51 PM)
nah, unfortunately, aided ears don't work the same as normal ears. he's still missing out on the fine pitch discrimination

Marge (ID=86) (Jun 22, 2000 11:21:18 PM)
yes, the phone is a problem for me. we have all amplified phones. i use hearing aids too, and use my t-coils with the phone

Marge (ID=86) (Jun 22, 2000 11:21:55 PM)
but i still have to ask for repetition, make sure folks are speaking slow & clear (for the most part). i turn the other aid off so i get an earplug effect in that ear, to cut down on background noise in the room

ELM (ID=85) (Jun 22, 2000 11:22:14 PM)
do you have any resources? I can't begin to tell you how I've struggled with this for 3 years. Right now he's got a dx of Aspergers as well, but between you and me, I wouldnt be surprised if much of the suspect behavior is caused by frustration with not being about to communicate effectively

ELM (ID=85) (Jun 22, 2000 11:22:49 PM)
but you don't have hearing loss?

Marge (ID=86) (Jun 22, 2000 11:22:51 PM)
have they done aided speech discrim tests on him in a soundfield? something like the california consonant test? his aided thresholds might be lovely, but i'd like to know how he does with the aids with speech?

ELM (ID=85) (Jun 22, 2000 11:23:11 PM)
do you find that the t-coil causes feedback in wireless phones?

Marge (ID=86) (Jun 22, 2000 11:24:04 PM)
that is correct, i don't have an audiometric loss, but yes i use hearing aids. i had to work pretty hard to justify that. in my case, it's because soft speech sounds distorted to me, as do very loud sounds like whistles

ELM (ID=85) (Jun 22, 2000 11:24:24 PM)
all test results are excellent, that's the kicker. that's exactly why I think it's auditory processing/attention. it's a struggle for him. in a testing situation when that's all he's got to do he's fine. but add *anything* to the equation and he falls apart. but there are no tests for that!

Marge (ID=86) (Jun 22, 2000 11:24:38 PM)
using hearing aids with compression, i can amplify soft speech, but put a clamp on things like whistles & popping balloons.

ELM (ID=85) (Jun 22, 2000 11:24:51 PM)
wow...so I guess the aids help? how do they help?

ELM (ID=85) (Jun 22, 2000 11:25:03 PM)
do you have programmable aids?

Marge (ID=86) (Jun 22, 2000 11:25:04 PM)
yeah, we have one 900 MHz phone that I can't use with the tcoils

Marge (ID=86) (Jun 22, 2000 11:25:23 PM)
my aids are not programmable. they help by amplifying soft sounds.

ELM (ID=85) (Jun 22, 2000 11:25:53 PM)
we have ALL 900 MHz phones and I just read in the AGBell literature that those phones are a nightmare!

Marge (ID=86) (Jun 22, 2000 11:25:57 PM)
you know how people talk about the pitter patter of little feet? before i had the hearing aids, i'd never heard my kids footsteps. i thought that was just some expression or figure of speech.

Marge (ID=86) (Jun 22, 2000 11:26:19 PM)
well, that explains it, LOL! you got an old corded phone around someplace your son could use?

Marge (ID=86) (Jun 22, 2000 11:26:48 PM)
the aids also help with keeping too-loud sounds from hurting myears

Marge (ID=86) (Jun 22, 2000 11:26:52 PM)
my ears

ELM (ID=85) (Jun 22, 2000 11:26:59 PM)
I can understand...I had a terrible sinus infection about a year ago and I lost 15 db...it was so unnerving to not be able to locate things I'd dropped because I hadn't heard them hit the floor!

Marge (ID=86) (Jun 22, 2000 11:27:38 PM)
ok, so compare that to your son's thresholds with aids: 15 dB is a lot of loss by that standard

ELM (ID=85) (Jun 22, 2000 11:27:48 PM)
ah, the computer...isn't it a wonderful thing, LOL?

Marge (ID=86) (Jun 22, 2000 11:27:52 PM)
YES

Marge (ID=86) (Jun 22, 2000 11:28:25 PM)
many many deaf and hard of hearing adults just adore email and online chats for that reason. no struggle to listen.

ELM (ID=85) (Jun 22, 2000 11:28:45 PM)
so...story of his life...he's not deaf enough for a HI program and he's having a miserable time in a mainstream environment

Marge (ID=86) (Jun 22, 2000 11:29:08 PM)
i also use the t-coil as a coupling device to a lot of assistive listening equipment, like my beloved FM system.

ELM (ID=85) (Jun 22, 2000 11:29:11 PM)
of course, having a teacher who would not let his aide help him this year didn't help

Marge (ID=86) (Jun 22, 2000 11:29:31 PM)
what's the plan for this upcoming year?

ELM (ID=85) (Jun 22, 2000 11:29:37 PM)
you use an FM, not a soundfield?

Marge (ID=86) (Jun 22, 2000 11:29:49 PM)
right, personal FM , not soundfield

Marge (ID=86) (Jun 22, 2000 11:30:19 PM)
and i use a neckloop to couple the aids into the fm receiver

ELM (ID=85) (Jun 22, 2000 11:30:41 PM)
I got an advocate because I don't want another stinkin' classroom aide, I want him to have a 1:1 aide. Either that or get him into a private school I'm going to look at next week for bright kids with learning differences

ELM (ID=85) (Jun 22, 2000 11:31:20 PM)
how did you get through school?

Marge (ID=86) (Jun 22, 2000 11:31:31 PM)
my problems did not develop until adulthood

ELM (ID=85) (Jun 22, 2000 11:31:45 PM)
REALLY! `

ELM (ID=85) (Jun 22, 2000 11:31:53 PM)
(oops)

Marge (ID=86) (Jun 22, 2000 11:32:02 PM)
but my 2 oldest girls had a bazillion ear infections, so maybe that's why their problems are showing up sooner.

ELM (ID=85) (Jun 22, 2000 11:32:35 PM)
I've never heard of that! You woke up one day and could suddenly relate you what your girls were going through, or did it happen gradually?

ELM (ID=85) (Jun 22, 2000 11:33:07 PM)
how many kids do you have? this just affects your 2 oldest girls?

Marge (ID=86) (Jun 22, 2000 11:33:22 PM)
very gradual deterioration. i first noticed something was out of whack when i was 28. some voices sounded like batteries being shorted out when i was 36 or so.

Marge (ID=86) (Jun 22, 2000 11:34:15 PM)
i have 4 kids... seems to affect all of them! the 2 middle girls have bona fide, no-fooling connective tissue problems, tho'. Come to find out the inner & middle ear are LOADED with connective tissues of various types

ELM (ID=85) (Jun 22, 2000 11:34:16 PM)
my son's sped team consists of all women except the case manager...he keeps joking that my son just has typical male selective hearing...wink wink at my husband...I could punch them both!

ELM (ID=85) (Jun 22, 2000 11:34:44 PM)
hmmm....what sorts of connective tissue issues?

Marge (ID=86) (Jun 22, 2000 11:34:47 PM)
that really, really stinks re: the case manager! a 70 dB loss at 8000 is no joke

ELM (ID=85) (Jun 22, 2000 11:35:13 PM)
he hasn't a clue how to read or interpret an audiogram

Marge (ID=86) (Jun 22, 2000 11:35:44 PM)
the 2 middle girls have or had bilateral inguinal hernias, dislocated lenses in the eyes, dilated aortic roots, hypermobile joints, extra-soft skin, and the auditory problems.

Marge (ID=86) (Jun 22, 2000 11:36:19 PM)
the oldest girl, youngest girl and myself have other, less severe problems that also suggest connective tissue problems.

ELM (ID=85) (Jun 22, 2000 11:36:22 PM)
I had a feeling you were going to say hypermobile joints...so does my son. He can stand on the tops of his toes

Marge (ID=86) (Jun 22, 2000 11:36:38 PM)
oh, now, isn't this interesting!

ELM (ID=85) (Jun 22, 2000 11:36:42 PM)
you have 4 girls!

ELM (ID=85) (Jun 22, 2000 11:36:46 PM)
yikes!

Marge (ID=86) (Jun 22, 2000 11:36:53 PM)
yeah, 4 girls! they are a ton of fun, too.

ELM (ID=85) (Jun 22, 2000 11:37:11 PM)
people say boys are hard (and they are...) but just how much whining is one person supposed to put up with, LOL?

Marge (ID=86) (Jun 22, 2000 11:37:12 PM)
is your son very nearsighted? any joint pain? is he very tall & thin?

ELM (ID=85) (Jun 22, 2000 11:37:21 PM)
YES!!!

Marge (ID=86) (Jun 22, 2000 11:37:30 PM)
that's what the "off" switch on my hearing aids is for, grin.

Marge (ID=86) (Jun 22, 2000 11:37:37 PM)
yes to all of the above???

ELM (ID=85) (Jun 22, 2000 11:37:42 PM)
He's not nearsighted...yet! I'm very nearsighted, tho.

Marge (ID=86) (Jun 22, 2000 11:38:09 PM)
does arthritis run in your family, or your husband's? how about hearing loss?

ELM (ID=85) (Jun 22, 2000 11:38:30 PM)
He has complained of pains in his legs in the past, dr said he didn't know what it was, it wasn't growing pains...and we call him Stick Figure, LOL

ELM (ID=85) (Jun 22, 2000 11:39:12 PM)
I was adopted so I'm a big black hole...on my husbands side there's just some good old fashioned mental illness but no one will confess to anything else

Marge (ID=86) (Jun 22, 2000 11:39:14 PM)
does he have a very low bridge to his nose, more obvious when he was a toddler than maybe it is now?

ELM (ID=85) (Jun 22, 2000 11:39:40 PM)
VERY high bridge...so odd that I had him tested for Fragile X (if that's where you're going)

Marge (ID=86) (Jun 22, 2000 11:39:54 PM)
nah, i was gonna ask about Marfan syndrome

ELM (ID=85) (Jun 22, 2000 11:40:03 PM)
oh, that's a new one, LOL

Marge (ID=86) (Jun 22, 2000 11:40:16 PM)
not all folks with Marfan look like the "space aliens" you see in the genetic textbooks

ELM (ID=85) (Jun 22, 2000 11:40:25 PM)
just when I thought I'd checked every last syndrome on the 'net, LOL

ELM (ID=85) (Jun 22, 2000 11:40:36 PM)
ok, what's Marfan?

Marge (ID=86) (Jun 22, 2000 11:40:38 PM)
long, narrow face? big prominent eyes? how are his teeth?

ELM (ID=85) (Jun 22, 2000 11:40:45 PM)
missing, LOL

Marge (ID=86) (Jun 22, 2000 11:40:55 PM)
long, narrow hands with long fingers?

ELM (ID=85) (Jun 22, 2000 11:41:11 PM)
yeah, but not really oddly so

Marge (ID=86) (Jun 22, 2000 11:41:14 PM)
haha re: missing teeth! in a 6 yr old, of course!

Marge (ID=86) (Jun 22, 2000 11:41:39 PM)
my 2 middle girls are justthisclose to being formally diagnosed with Marfan syndrome

ELM (ID=85) (Jun 22, 2000 11:41:55 PM)
you wouldn't look at him and say, wow, that kids got a long narrow face...but you might think he's got a weird nose

ELM (ID=85) (Jun 22, 2000 11:42:16 PM)
is that related to the connective tissue issue?

Marge (ID=86) (Jun 22, 2000 11:42:18 PM)
they have long fingers. everyone says they should be playing piano. but they don't look weird. i get compliments about how cute, even beautiful, they are

Marge (ID=86) (Jun 22, 2000 11:42:31 PM)
YES, Marfan is definitely a connective tissue disorder

ELM (ID=85) (Jun 22, 2000 11:42:48 PM)
no, you wouldn't comment on his hands

Marge (ID=86) (Jun 22, 2000 11:42:52 PM)
trick is (how to say this so i don't scare you)... there can be serious heart problems with Marfan

Marge (ID=86) (Jun 22, 2000 11:43:10 PM)
my girls are sooo fortunate to only have a dilated aortic root

ELM (ID=85) (Jun 22, 2000 11:43:18 PM)
and I'd think that if the neurologist thought it was a possiblity he'd have brought it up...we've discussed so many possible syndromes

Marge (ID=86) (Jun 22, 2000 11:43:36 PM)
if the whole aorta dilates, they have to do open heart surgery, assuming they know the aorta is dilated.

Marge (ID=86) (Jun 22, 2000 11:43:45 PM)
you seen a geneticist?

ELM (ID=85) (Jun 22, 2000 11:43:56 PM)
LOL, I don't scare easy...hearing loss, Tourettes, Aspergers...nah, I don't scare easy!

Marge (ID=86) (Jun 22, 2000 11:44:07 PM)
most marfan folks have normal to superior IQ... no connective tissue in the brain.

ELM (ID=85) (Jun 22, 2000 11:44:09 PM)
oh wow...that is scary

Marge (ID=86) (Jun 22, 2000 11:44:42 PM)
yeah, there was a member of the 1996 US women's volleyball team who died from a ruptured aorta. Postumously, they dx'd Marfan's

Marge (ID=86) (Jun 22, 2000 11:44:58 PM)
check out the Marfan foundation website at http://www.nmf.org

Marge (ID=86) (Jun 22, 2000 11:45:25 PM)
hearing loss has not yet been documented to be part of Marfan's... but I'm working on that, smile.

ELM (ID=85) (Jun 22, 2000 11:45:50 PM)
well, that's another thing...my husband and I (and I believe our 3yo...can't tell much about the baby yet, ) have superior IQ's but my son is just above average, and I've got to wonder if that's a processing thing. I can't imagine that if he doesn't understand me and my daughter that he's going to understand the tester.

Marge (ID=86) (Jun 22, 2000 11:45:58 PM)
my summer project is to collect audiograms from a bunch of folks with Marfan & 2 other connective tissue issues (smile)

ELM (ID=85) (Jun 22, 2000 11:46:13 PM)
what other ones?

Marge (ID=86) (Jun 22, 2000 11:46:22 PM)
may just be a hearing thing. kids learn so much auditorially when they are young.

Marge (ID=86) (Jun 22, 2000 11:46:37 PM)
Ehlers-Danlos syndrome (there are several subtypes of this disorder) and Stickler syndrome

Marge (ID=86) (Jun 22, 2000 11:47:17 PM)
you can check out Ehlers-Danlos at http://www.ednf.org and Stickler's at http://www.stickler.org

ELM (ID=85) (Jun 22, 2000 11:47:58 PM)
nmf came up as TeleManagement Forum...is that right?

Marge (ID=86) (Jun 22, 2000 11:48:03 PM)
Some Stickler's folks have unusual facial features. But many of them, you'd never pick them out of a crowd

Marge (ID=86) (Jun 22, 2000 11:48:32 PM)
no, should come up under National Marfan Foundation. perhaps I don't have the right addy for that??

Marge (ID=86) (Jun 22, 2000 11:49:15 PM)
the other groups are Ehlers-Danlos National Foundation and Stickler Involved People.

Marge (ID=86) (Jun 22, 2000 11:50:18 PM)
hearing loss is KNOWN to be associated with Stickler. in fact, i know an adult with stickler who has the same type loss as your son. to look at the audiograms, you'd figure, well, she is having some trouble but is not too badly off. a teensy bit worse on the left than the right. but she considers her left ear to be deaf.

ELM (ID=85) (Jun 22, 2000 11:50:34 PM)
sorry, brb, bookmarking...

Marge (ID=86) (Jun 22, 2000 11:50:36 PM)
hearing loss is suspected of being associated with Ehlers-Danlos

Marge (ID=86) (Jun 22, 2000 11:50:40 PM)
no problem, smile!

Marge (ID=86) (Jun 22, 2000 11:52:29 PM)
was your son in early intervention? or are they doing intensive speech/language therapy with him, to help him catch up to his potential?

ELM (ID=85) (Jun 22, 2000 11:52:59 PM)
oh wow, I've got the chills...why would his neurologist not mention Stickler? Is there anything that can be done?

Marge (ID=86) (Jun 22, 2000 11:53:30 PM)
stickler is not well known. and it doesn't have neurological manifestations, so i would not expect a neurologist to know about it.

ELM (ID=85) (Jun 22, 2000 11:54:22 PM)
no, neither...at almost 3 I brought him to an SLP because he didn't have /k/ and /g/, which I mistakenly thought he should by 3. He's got slightly closed/covered (what's the term?) /r/ and /l/, but he's also missing 4 teeth, LOL

Marge (ID=86) (Jun 22, 2000 11:54:46 PM)
well, stickler is genetic, so at present is not curable. but all the manifestations of stickler are medically or surgically treatable. stickler does NOT have the serious heart involvment that Marfan does. the worst that's been reported heartwise with stickler is mitral valve prolapse, which is usually no big deal.

ELM (ID=85) (Jun 22, 2000 11:54:54 PM)
(LOL, this chat program expanded S L P...neat!)

Marge (ID=86) (Jun 22, 2000 11:55:14 PM)
yeah, does the same thing for a u d watch this -> aud

ELM (ID=85) (Jun 22, 2000 11:55:23 PM)
well, I'll have to read more, but a HUGE thank you!

Marge (ID=86) (Jun 22, 2000 11:55:25 PM)
and f f w d

Marge (ID=86) (Jun 22, 2000 11:55:27 PM)
ffwd

Marge (ID=86) (Jun 22, 2000 11:55:32 PM)
FFWD

ELM (ID=85) (Jun 22, 2000 11:55:38 PM)
LOL, guess not!

Marge (ID=86) (Jun 22, 2000 11:55:38 PM)
ah, maybe not, haha

Marge (ID=86) (Jun 22, 2000 11:55:54 PM)
ok elm... my email addy is margetamas@mediaone.net

Marge (ID=86) (Jun 22, 2000 11:56:15 PM)
i am on the NMF email list and the SIP email list... i post a lot about hearing issues. Odd, isn't it ?

ELM (ID=85) (Jun 22, 2000 11:56:25 PM)
hey, Marge, that was sneaky! You ARE the Marge I thought you were, LOL! I know you from the list!

ELM (ID=85) (Jun 22, 2000 11:56:34 PM)
Atlanta Marge!

ELM (ID=85) (Jun 22, 2000 11:56:53 PM)
My brother and his family are in Atlanta...Sandy Springs

Marge (ID=86) (Jun 22, 2000 11:56:59 PM)
that would be me, hahaha. still an engineer, tho', not an audiologist. tho' i suppose i could play one in the movies!

ELM (ID=85) (Jun 22, 2000 11:57:13 PM)
yeah, and a damn fine one at that, LOL

Marge (ID=86) (Jun 22, 2000 11:57:25 PM)
if you come to visit him, let me know! maybe we could have a cup of coffee or something.

Marge (ID=86) (Jun 22, 2000 11:57:54 PM)
well, *blush*, i've never had anyone say that that way before :)

ELM (ID=85) (Jun 22, 2000 11:58:01 PM)
sounds great! Don't expect me in hotlanta for a while tho, LOL...like October!

ELM (ID=85) (Jun 22, 2000 11:58:24 PM)
Ever come up to the NY area?

Marge (ID=86) (Jun 22, 2000 11:58:57 PM)
ah, you've visited atlanta in the summer, i see . yes, i've been to NY, but not for a long time. used to have a grandmother there, but she died years ago.

ELM (ID=85) (Jun 22, 2000 11:59:04 PM)
isn't that funny...I've never heard you say anything about yourself or your girls...maybe I wasn't listening...you know, selective hearing...

Marge (ID=86) (Jun 22, 2000 11:59:04 PM)
you upstate?

ELM (ID=85) (Jun 22, 2000 11:59:21 PM)
no, actually I'm in NJ, just outside NY

Marge (ID=86) (Jun 22, 2000 11:59:38 PM)
i don't talk much about myself (other than explaining weird auditory stuff that happens to me) or my kids on the list.

ELM (ID=85) (Jun 22, 2000 11:59:49 PM)
yeah, I noticed that, LOL

ELM (ID=85) (Jun 23, 2000 12:00:14 AM)
I was going to email to for some advice...it's been such a bumpy road...thought you were an audiologist!

ELM (ID=85) (Jun 23, 2000 12:00:29 AM)
Did you just stumble on the list or do you have a relationship with Dr J?

Marge (ID=86) (Jun 23, 2000 12:01:02 AM)
chat is better for the personal stuff, i think, tho' if you check the archives, you can read all about my battle with the private school my kids were in before... that got rather personal & emotional... a teacher was SURE my kids were ADD or ADHD, and ignored the audiologist's report.

Marge (ID=86) (Jun 23, 2000 12:01:24 AM)
an aud i know online pointed me in the direction of the list. never met dr j.

ELM (ID=85) (Jun 23, 2000 12:01:26 AM)
THAT sounds familiar!!! I will check that out!

Marge (ID=86) (Jun 23, 2000 12:01:56 AM)
my oldest girl, who is very very bright, was so demoralized... and it took us so long to figure that out!

ELM (ID=85) (Jun 23, 2000 12:02:08 AM)
uh oh, the baby's up again...I'd better run...it was SOOOO great chatting with you! Thanks so much, I'm sorry I have to run!

Marge (ID=86) (Jun 23, 2000 12:02:19 AM)
canyou imagine a teacher penalizing a kid for handwriting... the same week she'd broken that arm?

ELM (ID=85) (Jun 23, 2000 12:02:25 AM)
(I'll bet she was...I'm living with that right now too!)

ELM (ID=85) (Jun 23, 2000 12:02:46 AM)
sorry, gonna run...THANKS!