homeyswife: i'm listening... keep going
kt (ID=116) (Aug 22, 2000 10:06:35 PM)
Hello everyone!
debbie (ID=95) (Aug 22, 2000 10:06:36 PM)
hi kt...welcome to the chat!
Marge (ID=112) (Aug 22, 2000 10:07:14 PM)
does everyone in the room know that kids with mild-moderate hearing loss and kids with CAPD can't be differentiated on the basis of behavior?
Rose (ID=107) (Aug 22, 2000 10:07:31 PM)
have report in front of me, will take with me along with all other assesments and evaluations as it is requyired for testing at childrens hospital
homeyswife (ID=111) (Aug 22, 2000 10:07:42 PM)
so it says jonathan consistently scored 100 % when the target sentences were presented to his right ear, and 60% when they were presented to his left ear, indicating a left-ear delay or deficit in auditory processing abilites
Marge (ID=112) (Aug 22, 2000 10:07:43 PM)
that is why it is so important to get the "plain" hearing test results first
debbie (ID=95) (Aug 22, 2000 10:08:17 PM)
Rose it's always a good idea so the audiologist has a basis to start with
homeyswife (ID=111) (Aug 22, 2000 10:08:23 PM)
hey yeah, his behavior hasn't been a problem so far, so he never fit that category.
debbie (ID=95) (Aug 22, 2000 10:08:38 PM)
homeyswife. how old did you say jonathan is?
homeyswife (ID=111) (Aug 22, 2000 10:08:46 PM)
turned 4 in may
Marge (ID=112) (Aug 22, 2000 10:08:49 PM)
homeyswife: i'm not necessarily talking about disruptive or bad behavior
homeyswife (ID=111) (Aug 22, 2000 10:08:55 PM)
oh
Rose (ID=107) (Aug 22, 2000 10:08:58 PM)
my son is very complicated as he has several LD's in addition to CAPD
Marge (ID=112) (Aug 22, 2000 10:09:03 PM)
homeyswife: i mean how they behave when exposed to sound
homeyswife (ID=111) (Aug 22, 2000 10:09:11 PM)
ohhhh, i see :)
debbie (ID=95) (Aug 22, 2000 10:09:25 PM)
the reason that many audiologist do not like to test for capd in younger children is that it is natural for the right ear to dominate over the left ear. .....(continuing)
Marge (ID=112) (Aug 22, 2000 10:09:27 PM)
hearing impaired kids are often miserable in background noise
Rose (ID=107) (Aug 22, 2000 10:09:34 PM)
meaning what? how they behave how?
Rose (ID=107) (Aug 22, 2000 10:09:49 PM)
don't understand
Marge (ID=112) (Aug 22, 2000 10:10:00 PM)
hearing impaired kids will often avoid large group situations
Marge (ID=112) (Aug 22, 2000 10:10:12 PM)
... will complain that the noise in a place like a gym bothers them
debbie (ID=95) (Aug 22, 2000 10:10:17 PM)
just as a child is born to be right or left handed, when a child is born, their right ear is typically dominant.....their left ear usually catches up at a later point in time, (bringing in the maturational factor)
Marge (ID=112) (Aug 22, 2000 10:10:20 PM)
... will misunderstand what is said to them
Marge (ID=112) (Aug 22, 2000 10:10:38 PM)
... will "not pay attention" when their name is called at a distance
Marge (ID=112) (Aug 22, 2000 10:11:01 PM)
... you often see the same behaviors in kids with capd.
Rose (ID=107) (Aug 22, 2000 10:11:19 PM)
my son always misunderstands what is said to him especially if you try to give him multiple instruction or use complex sentences
homeyswife (ID=111) (Aug 22, 2000 10:11:29 PM)
thats what the audiologist explained to me. He does this sometimes, but we aren't in any huge situations like that. His speech right now is about 60% intelligable
homeyswife (ID=111) (Aug 22, 2000 10:12:10 PM)
I REALLY REALLY hate to go, but I have to. I am SOOO glad I have found this chat site and will be back as soon as I can. Please help me when I get back!!!! :)
Rose (ID=107) (Aug 22, 2000 10:12:15 PM)
my sons speech is okay by a therapists point of view, yet often no one understands him
Marge (ID=112) (Aug 22, 2000 10:12:18 PM)
homeyswife: has your son had the evoked potential tests? electrodes on the scalp kind of thing?
homeyswife (ID=111) (Aug 22, 2000 10:12:33 PM)
no he hasn't
Rose (ID=107) (Aug 22, 2000 10:13:08 PM)
mine hasn't either I don't think, his CAPD testing was done without me in the room
debbie (ID=95) (Aug 22, 2000 10:13:09 PM)
homesywife, please take a minute to sign up for the email list on the site!! I hope to hear from you soon and to be able to make more announcements about the National Coaliton on Auditory Processing Disorders
Marge (ID=112) (Aug 22, 2000 10:13:16 PM)
homeyswife: a 4 yr old is young even for beep in the booth type testing. the evoked potential tests might be very helpful in deciding if he has capd or something else
homeyswife (ID=111) (Aug 22, 2000 10:13:48 PM)
ok I will sign up right now. thanks sooo much so far!!!
Rose (ID=107) (Aug 22, 2000 10:13:52 PM)
think he may have mentioned something like that
Marge (ID=112) (Aug 22, 2000 10:14:19 PM)
rose: evoked potential tests have been recommended for your son, you mean?
Rose (ID=107) (Aug 22, 2000 10:14:32 PM)
Scan tests came out normal only SSW produced abnormal results
bren (ID=117) (Aug 22, 2000 10:14:33 PM)
(This user has entered CAPD: From the Heart)
Marge (ID=112) (Aug 22, 2000 10:14:38 PM)
hi bren
debbie (ID=95) (Aug 22, 2000 10:14:45 PM)
Marge, before you came in, I did announce that the NCAPD is formally a nonprofit corporation now!!! I got the official word yesterday!
debbie (ID=95) (Aug 22, 2000 10:14:51 PM)
hi Bren
Rose (ID=107) (Aug 22, 2000 10:14:54 PM)
no I never even heard of them, so I doubt he had any done
Marge (ID=112) (Aug 22, 2000 10:15:06 PM)
<--- throws confetti all over the room. YAAAAAAAYYYYYY!!!!!
mlmom (ID=113) (Aug 22, 2000 10:15:29 PM)
Congrats Debbie!
debbie (ID=95) (Aug 22, 2000 10:15:40 PM)
Hopefully the new website will be up and running very soon. There will be a connection to the chat from both sites!
debbie (ID=95) (Aug 22, 2000 10:15:48 PM)
thanks Marge, thanks mlmom.
Rose (ID=107) (Aug 22, 2000 10:15:54 PM)
so debbie exactly what does this mean for the kids or parents of children with CAPD,exactly how does it help?
Rose (ID=107) (Aug 22, 2000 10:16:14 PM)
I'm sure it will I was just wondering how it makes a difference
debbie (ID=95) (Aug 22, 2000 10:16:39 PM)
Rose we are going to work on public awareness programs aimed toward schools, aud, slp and parents.
bren (ID=117) (Aug 22, 2000 10:16:47 PM)
hey guys...finally i got on and please excuse me if i happen to be slow but it is a slow comp and am a slow typer
Marge (ID=112) (Aug 22, 2000 10:17:15 PM)
bren: for chat, you definitely don't need a firebreathing computer. we won't even notice, honest!
mlmom (ID=113) (Aug 22, 2000 10:17:29 PM)
Debbie, will there be things that other parents can do to help?
bren (ID=117) (Aug 22, 2000 10:17:29 PM)
ok
debbie (ID=95) (Aug 22, 2000 10:17:36 PM)
We will begin working on programs for the NCAPD soon. We still have to obtain the tax exempt status.
Marge (ID=112) (Aug 22, 2000 10:18:03 PM)
debbie: don't you have to be in operation as a nonprofit for a certain period of time to qualify for tax exempt status??
debbie (ID=95) (Aug 22, 2000 10:18:09 PM)
mlmom, YES!!! *LOL* I just have to get organized and then I'll be putting out more information
bren (ID=117) (Aug 22, 2000 10:18:16 PM)
what is the NCAPD
debbie (ID=95) (Aug 22, 2000 10:18:18 PM)
no Marge, you do not.
Marge (ID=112) (Aug 22, 2000 10:18:38 PM)
bren: see the banner?
Rose (ID=107) (Aug 22, 2000 10:18:40 PM)
all I really know is the audiologist recommended a trial use of an assistive listening device at school and also recommended a program for him like fast Forward or Earbotics(but the school doesn't have either, supposively they use something else similiar)
Marge (ID=112) (Aug 22, 2000 10:19:14 PM)
rose: i'd take them up on both things... and meanwhile, keep pursuing a fuller audiological eval
debbie (ID=95) (Aug 22, 2000 10:19:16 PM)
the NCAPD is the National Coaliton on Auditory Processing Disorders, Inc. It is a new nonprofit organization that was just officially incoporated last week. Our goal is to help bring a public awareness to auditory processing disorders,
bren (ID=117) (Aug 22, 2000 10:19:44 PM)
great!!
debbie (ID=95) (Aug 22, 2000 10:19:56 PM)
Marge, I've spent so much time on the phone with the IRS , that I think we are on a first name basis! *L*
Marge (ID=112) (Aug 22, 2000 10:20:23 PM)
debbie: hahah! i just was recalling what another online group i know went thru when they wanted to get tax exempt status
mlmom (ID=113) (Aug 22, 2000 10:20:30 PM)
Good. I have to go but I'll be back some time. I always follow the listserv postings too. Good night everyone.
Rose (ID=107) (Aug 22, 2000 10:20:31 PM)
Well we had an IEP meeting in June and the school has to evaluate him to determine his eligibility for both things, they have to complete this within 45 days from the start of school in Sept,
Marge (ID=112) (Aug 22, 2000 10:20:37 PM)
gnite mlm
debbie (ID=95) (Aug 22, 2000 10:20:40 PM)
bren, it's new and will take time to form, but we are official and can begin work now! The Board of Directors will be meeting soon to start development projects
debbie (ID=95) (Aug 22, 2000 10:20:45 PM)
goodnight mlmom!!!!
Marge (ID=112) (Aug 22, 2000 10:20:58 PM)
debbie: who's on the board so far?
debbie (ID=95) (Aug 22, 2000 10:21:14 PM)
Dr J , Dr Moncrieff and myself
Marge (ID=112) (Aug 22, 2000 10:21:31 PM)
great!
bren (ID=117) (Aug 22, 2000 10:22:02 PM)
What was done to get it up and started
Marge (ID=112) (Aug 22, 2000 10:22:03 PM)
patty: you still there? any questions you'd like to ask?
patty (ID=109) (Aug 22, 2000 10:22:20 PM)
still here
debbie (ID=95) (Aug 22, 2000 10:22:31 PM)
I"m looking forward to work with both Dr's. They are incredible individuals and I have the greatest amount of respect for them both. I feel very honored they agreed to sit on the Board.
Rose (ID=107) (Aug 22, 2000 10:22:42 PM)
marge i was telling Debbie that my son was just declared disabled and he was able to get a medical card as wrap around insurance so at least now I don't have to worry about costs when he gets tested
Marge (ID=112) (Aug 22, 2000 10:22:59 PM)
rose: oh, that's great news!
debbie (ID=95) (Aug 22, 2000 10:23:12 PM)
Bren, I"ve been doing alot of research for some time on how to start a nonprofit and the legalities, I filed the corporation papers in Florida where I live.
bren (ID=117) (Aug 22, 2000 10:23:34 PM)
i am from fla. also
debbie (ID=95) (Aug 22, 2000 10:23:42 PM)
where about?
bren (ID=117) (Aug 22, 2000 10:23:49 PM)
deltona area
bren (ID=117) (Aug 22, 2000 10:23:53 PM)
u?
patty (ID=109) (Aug 22, 2000 10:23:57 PM)
Marge will they do the audiogram test with Capd testing or do I ask for it?
Rose (ID=107) (Aug 22, 2000 10:24:15 PM)
of course my private insurance is his primary insurance, but all additional expenses will now be covered and his eligibility wasn't based on the family income, just his need
Rose (ID=107) (Aug 22, 2000 10:24:31 PM)
I'm from PA
debbie (ID=118) (Aug 22, 2000 10:25:21 PM)
(This user has entered CAPD: From the Heart)
debbie (ID=118) (Aug 22, 2000 10:25:37 PM)
<<~~~victim of AOL tonight too! *LOL*
debbie (ID=118) (Aug 22, 2000 10:26:00 PM)
bren...where are you in Florida if I may ask? I'm in Jacksonville
Marge (ID=112) (Aug 22, 2000 10:26:09 PM)
patty: you should not have to ask for it, but if you want to doublecheck the testing, look for: pure tone thresholds in air and bone, otoscopic exam (look in the ear), tympanometry, acoustic reflexes with decay, speech reception threshold, speech discrimination with and without noise, otoacoustic emissions
Marge (ID=112) (Aug 22, 2000 10:26:34 PM)
patty: these are all standard audiological tests separate and apart from any tests they would run specifically for capd.
Marge (ID=112) (Aug 22, 2000 10:27:21 PM)
patty: the specific tests used for capd can vary quite a bit... lots of choices, lots of abbreviations
bren (ID=117) (Aug 22, 2000 10:27:23 PM)
I am about 1 hour away from you ..i think?HEHE..about 40 minutes away from orlando
patty (ID=109) (Aug 22, 2000 10:27:33 PM)
He is going to see Nancy Stecker at UB
Marge (ID=112) (Aug 22, 2000 10:27:44 PM)
patty: you'll be in good hands, then.
patty (ID=109) (Aug 22, 2000 10:27:57 PM)
Thanks
debbie (ID=118) (Aug 22, 2000 10:28:07 PM)
it's good to find people from florida!
Marge (ID=112) (Aug 22, 2000 10:28:17 PM)
patty: your child will probably be VERY tired after testing... be sure to have a special treat afterwards
bren (ID=117) (Aug 22, 2000 10:28:28 PM)
I had my daughter tested at Arnold Palmer Hospital in orlando
bren (ID=117) (Aug 22, 2000 10:28:54 PM)
Yes it is Debbie
debbie (ID=118) (Aug 22, 2000 10:28:56 PM)
Sarah is working with dr moncrieff from the University of Florida
Marge (ID=112) (Aug 22, 2000 10:29:02 PM)
<--- looks at the clock... EEP!!
debbie (ID=118) (Aug 22, 2000 10:29:17 PM)
night Marge!! *LOL* dont turn into a pumpkin!
Marge (ID=112) (Aug 22, 2000 10:29:20 PM)
getting late for me... gotta see the kids off to school in the morning
bren (ID=117) (Aug 22, 2000 10:29:27 PM)
Giansville right?
debbie (ID=118) (Aug 22, 2000 10:29:33 PM)
yes bren
bren (ID=117) (Aug 22, 2000 10:29:42 PM)
oops gainsville
Marge (ID=112) (Aug 22, 2000 10:29:44 PM)
debbie: hahah! ok! gnite!! Thanks again for all your hard work getting NCAPD going!
debbie (ID=118) (Aug 22, 2000 10:29:48 PM)
how was the testing at the Arnold Palmer Hospital?
Rose (ID=107) (Aug 22, 2000 10:29:52 PM)
Audiometric testing results only mention pure tone and speech audiometry revealed normal hearing acuity bilaterally with excellent speech discrimination skills for monosyllibic words presented in quiet ai conversational levels
debbie (ID=118) (Aug 22, 2000 10:29:54 PM)
thanks Marge!
Rose (ID=107) (Aug 22, 2000 10:30:18 PM)
bye marge
Marge (ID=112) (Aug 22, 2000 10:30:36 PM)
rose: "normal" is actually a range of values... look for values over 15 dB (ok, ok, i'm really going now!)
bren (ID=117) (Aug 22, 2000 10:30:52 PM)
Rose..what the heck did you just say...lol!!
debbie (ID=118) (Aug 22, 2000 10:31:00 PM)
bren....LOL
bren (ID=117) (Aug 22, 2000 10:31:11 PM)
I am new to this
Rose (ID=107) (Aug 22, 2000 10:31:14 PM)
have no idea
bren (ID=117) (Aug 22, 2000 10:31:21 PM)
LOL!!!
debbie (ID=118) (Aug 22, 2000 10:31:25 PM)
it's ok...hold on..let me look and interpret what i can
Rose (ID=107) (Aug 22, 2000 10:32:06 PM)
just relaying what his report said
bren (ID=117) (Aug 22, 2000 10:32:33 PM)
ok
Rose (ID=107) (Aug 22, 2000 10:33:00 PM)
also said Impendance audiometry was negative for middle ear dysfunction but there is no mention of thresholds
bren (ID=117) (Aug 22, 2000 10:33:00 PM)
did you have him simplify it for you
Rose (ID=107) (Aug 22, 2000 10:33:31 PM)
that is the simple version supposively means ears work fine
bren (ID=117) (Aug 22, 2000 10:33:46 PM)
Its good that you do so that you may relay the message to others better
Rose (ID=107) (Aug 22, 2000 10:34:06 PM)
but no numbers where given to see what marge told me to look for
bren (ID=117) (Aug 22, 2000 10:34:17 PM)
oh ok
debbie (ID=118) (Aug 22, 2000 10:34:25 PM)
pure tone and audiometry ( beep tests ) revealed normal hearing acuity bilaterally (both ears) with an excellent speech discrimination skills ( understanding the sounds) for monosyllibic words (one syllabil) presented in quiet ai conversational levels (low noise) (geesh, hope i got this right!!)
Rose (ID=107) (Aug 22, 2000 10:35:01 PM)
sounds right but hey didn't test thresholds at all as far as I can tell
bren (ID=117) (Aug 22, 2000 10:35:17 PM)
Well geez that sounds alot better..thanx
debbie (ID=118) (Aug 22, 2000 10:35:56 PM)
Rose, they may have tested the thresholds, but not included it in the results if they were normal. In order for an audioligst to test for capd they have to test thresholds....It's a basic part of the testing.
drewk (ID=120) (Aug 22, 2000 10:36:02 PM)
(This user has entered CAPD: From the Heart)
debbie (ID=118) (Aug 22, 2000 10:36:10 PM)
Bren, I just hope i got it right! *LOL*
debbie (ID=118) (Aug 22, 2000 10:36:16 PM)
hi drewk! How are you tonight?
bren (ID=117) (Aug 22, 2000 10:37:01 PM)
the testing at arnold from what i can tell was godd...i have to get the testing results next time so that i can relay what they said
Rose (ID=107) (Aug 22, 2000 10:37:24 PM)
well guess what I really don't beleive they did if I'm not mistaken I even asked them about it
debbie (ID=118) (Aug 22, 2000 10:37:27 PM)
When my daughter was originally tested back in april of 1998, i was not given the testing thresholds, but when i requested a complete copy of the tests recently, i was given the tests.
drewk (ID=120) (Aug 22, 2000 10:37:43 PM)
I am fine thank you. This is my first night in this chat site so bear with me.
bren (ID=117) (Aug 22, 2000 10:37:44 PM)
i had a developmental specialist recommend me to get her tested there
debbie (ID=118) (Aug 22, 2000 10:38:07 PM)
drewk, we are happy to have you here! take your time, we are very patient!
Rose (ID=107) (Aug 22, 2000 10:38:33 PM)
the only reason I knew it should have been done was that I had the information sent to me from Children's Hospital Of Philadelphia which indicated that they did this test
bren (ID=117) (Aug 22, 2000 10:38:40 PM)
so when i look at my results look 4 the thresholds
debbie (ID=118) (Aug 22, 2000 10:38:41 PM)
Rose, I'm not doubting you, but that would shock me!
debbie (ID=118) (Aug 22, 2000 10:39:42 PM)
bren, I will admit that I dont know alot about interpretting thresholds and such, the bottom line is what areas is your child having trouble in and what are the underlying factors causing those problems.
Rose (ID=107) (Aug 22, 2000 10:40:30 PM)
I forget their reason they said they didn't do the test but whatever it was I figured they knew what they were talking about
debbie (ID=121) (Aug 22, 2000 10:41:15 PM)
(This user has entered CAPD: From the Heart)
debbie (ID=121) (Aug 22, 2000 10:41:36 PM)
hey everyone!! i'm baaaaaaaaaaacck!! *LOL*
Rose (ID=107) (Aug 22, 2000 10:41:42 PM)
was really only after I received the report and didn't understand it , that I became aware that the testing wasn't thorough
debbie (ID=121) (Aug 22, 2000 10:41:51 PM)
if you sent me a message, please repost..im sorry!
bren (ID=117) (Aug 22, 2000 10:42:05 PM)
when you r talking to her she misses what you say and you have to go back and fill the gaps
bren (ID=117) (Aug 22, 2000 10:42:33 PM)
she only gets the jist and not the full talk
drewk (ID=120) (Aug 22, 2000 10:42:36 PM)
My daughter is 10 years old and has been diagnosed with CAPD since she was in the first grade. I have fought and fought with the school districts and am at my wits end. I understand completely CAPD with all of my research etc but the school districts do not want to take their part--I have taken the advocate classes and have now put this child through more medical, psychiatric and psychological testings with all results showing the need and the diagnosis but the districts still pacify me with the words that I want to hear with no real results----Any suggestions?
Rose (ID=107) (Aug 22, 2000 10:42:45 PM)
they really weren't very good at explaining the report even after I questioned them
debbie (ID=121) (Aug 22, 2000 10:43:13 PM)
drewk, do you put your requests in writing?
debbie (ID=121) (Aug 22, 2000 10:43:34 PM)
Rose, that may be because they do not understand much themselves.
debbie (ID=121) (Aug 22, 2000 10:43:42 PM)
drewk, may i ask where you are from?
drewk (ID=120) (Aug 22, 2000 10:44:51 PM)
All of them are in writing. All IEP meetings are taped. All of my ducks are in a row. My time is running out since she is in the 5th grade with all of my results stating in black and white that she is anywhere from a 1.2grade level to a 3.4 grade level. Right now I am in the state of Arizona.
Rose (ID=107) (Aug 22, 2000 10:44:58 PM)
drewk I would suggest several things one being the approach that debbie indicated, next i would hire an advocate to help you in your fight(this has worked for me) also try to get your child declared disabled due to the diagnosis then they have to address her needs
debbie (ID=121) (Aug 22, 2000 10:45:41 PM)
drwek what is the school telling you? what modifications are you seeking that they are not providing?
Rose (ID=107) (Aug 22, 2000 10:45:47 PM)
they can't turn there heads to a child declared disabled it is against the law
debbie (ID=121) (Aug 22, 2000 10:46:33 PM)
drewk, please understand I was not implying your ducks weren't in a row, just trying to find out where you were at in the process.
bren (ID=117) (Aug 22, 2000 10:46:46 PM)
how do you declare your child disabled
Rose (ID=107) (Aug 22, 2000 10:47:19 PM)
drewk it sounds like your childs readings reading level varies and is hard to pin point just like my sons
bren (ID=117) (Aug 22, 2000 10:47:42 PM)
how did she do on her FCAT
drewk (ID=120) (Aug 22, 2000 10:47:46 PM)
She is already declared disables and protected by the American disabilities Act. I have obtained an advocate and as I said I have taken all of the advocacy classes. with all of my experience I must say that I am probably the best advocate for my daughter as well as for my situation with the districts.
debbie (ID=121) (Aug 22, 2000 10:48:25 PM)
there is no doubt you are the BEST advocate for your child. You have a vested interest in your childs future!
Rose (ID=107) (Aug 22, 2000 10:48:36 PM)
was she declared disabled by SSI?
bren (ID=117) (Aug 22, 2000 10:48:44 PM)
AMEN!!!
Rose (ID=107) (Aug 22, 2000 10:49:17 PM)
we all are our childs best advocate, but it helps to have support either with a professional advocate or laywer
debbie (ID=121) (Aug 22, 2000 10:49:45 PM)
Rose I agree with you. I wish during my meetings with the school I had someone on my side.
Rose (ID=107) (Aug 22, 2000 10:49:46 PM)
too often we are outnumber in IEP meetings
drewk (ID=120) (Aug 22, 2000 10:50:03 PM)
My daughter's reading levels range in the 1.2grade level to 3.4 grade level depending on the subject at hand not just in the reading,
debbie (ID=121) (Aug 22, 2000 10:50:46 PM)
drewk have you considered requesting a formal hearing?
Rose (ID=107) (Aug 22, 2000 10:51:23 PM)
my sons varies from what they call pre-primer to end of 1st grade level, he is going into 3rd this year
debbie (ID=121) (Aug 22, 2000 10:51:42 PM)
if your daughter already had an IEP, what services are included and what services are you seeking?
bren (ID=117) (Aug 22, 2000 10:52:04 PM)
my daughter is a half a year to a year behind
bren (ID=117) (Aug 22, 2000 10:52:53 PM)
isnt an IEP legally binding
drewk (ID=120) (Aug 22, 2000 10:52:56 PM)
The formal hearing is our next step. I have another IEP meeting this Friday and if action is not taken this meeting a lawyer will be sought out and other action will have to be taken. I haven't any other choice.
Rose (ID=107) (Aug 22, 2000 10:53:01 PM)
words he reads one day are unretrievable the next, but may be read the day after
debbie (ID=121) (Aug 22, 2000 10:53:01 PM)
YES!
debbie (ID=121) (Aug 22, 2000 10:53:41 PM)
drewk you are right about no other choice, you have to do what you have to do for your child's sake,
Rose (ID=107) (Aug 22, 2000 10:53:52 PM)
it is very frustrating as they can't really place him in any specific level as it fluctuates from day to day
patty (ID=109) (Aug 22, 2000 10:54:20 PM)
I have to get going. Goodbye all.
debbie (ID=121) (Aug 22, 2000 10:54:21 PM)
Rose, Sarah has trouble with short term memory, but can remember things that happened along time ago.
debbie (ID=121) (Aug 22, 2000 10:54:29 PM)
bye patty!! have a great night
Rose (ID=107) (Aug 22, 2000 10:55:40 PM)
school has finally taken action and hopefully things will be better for my son this year, he has been declared disabled through SSI and the advocate has at least gotten the school to move in the right direction, let's see if they follow through
Rose (ID=107) (Aug 22, 2000 10:56:21 PM)
drewk we still don't know if your daughter already has an IEP, what is on it now if she does, and what you want on it
sherri (ID=123) (Aug 22, 2000 10:56:38 PM)
(This user has entered CAPD: From the Heart)
debbie (ID=121) (Aug 22, 2000 10:56:42 PM)
Rose, I wish you the best of luck this year. I know I am very reluctant about this year and the things Sarah is suppose to be able to accomplish. I see a very frustrating year ahead
debbie (ID=121) (Aug 22, 2000 10:56:50 PM)
hi sherri! how are you tonight?
bren (ID=117) (Aug 22, 2000 10:57:04 PM)
Even though i have an IEP i still make myself "KNOWN". I am at the school as much as i can and go to the teacher and make him understand that i am not going anywhere. I am always peeking in there to make sure what i requested from the teacher is being done too. Be a pest ...it works
sherri (ID=123) (Aug 22, 2000 10:57:10 PM)
hi everyone
debbie (ID=121) (Aug 22, 2000 10:57:38 PM)
the squeaky wheel does get oiled bren!
sherri (ID=123) (Aug 22, 2000 10:58:11 PM)
it;s been hard to get to you this summer but sometimes I check the old chats
debbie (ID=121) (Aug 22, 2000 10:58:26 PM)
well it's good to see you back amongst us!
bren (ID=117) (Aug 22, 2000 10:58:44 PM)
also keep a log of who what and when so that you have a record of your endless efforts of communication
debbie (ID=121) (Aug 22, 2000 10:58:52 PM)
ggrrrrrr...AOL is driving me nuts tonight....
bren (ID=117) (Aug 22, 2000 10:59:00 PM)
Lol!
drewk (ID=124) (Aug 22, 2000 10:59:02 PM)
(This user has entered CAPD: From the Heart)
debbie (ID=121) (Aug 22, 2000 10:59:14 PM)
welcome back drewk...are you on AOL?
Rose (ID=107) (Aug 22, 2000 10:59:31 PM)
my son's whole iEP needs to be reworked as they only included reading problems in his first one, they neglected his ADHD and since CAPD diagnosis came later that wasn't included plus they didn't address his fine motor skills problems,visual perception problems or sensory issues
sherri (ID=123) (Aug 22, 2000 10:59:39 PM)
Michael is getting a speaker on his desk this year with the teacher having a microphone
drewk (ID=124) (Aug 22, 2000 10:59:40 PM)
Yes but I hit the wrong button
debbie (ID=121) (Aug 22, 2000 11:00:00 PM)
great sherri! when do you start school?
sherri (ID=123) (Aug 22, 2000 11:00:05 PM)
we are having his fall iep next tue
Tracy (ID=125) (Aug 22, 2000 11:00:14 PM)
(This user has entered CAPD: From the Heart)
debbie (ID=121) (Aug 22, 2000 11:00:16 PM)
so many people (including myself) are having trouble with AOL tonight
bren (ID=117) (Aug 22, 2000 11:00:17 PM)
how did you accomplish that sherri?
debbie (ID=121) (Aug 22, 2000 11:00:28 PM)
hi Tracy! how are you tonight?
Tracy (ID=125) (Aug 22, 2000 11:00:43 PM)
HI Great, this afternoon!
Rose (ID=107) (Aug 22, 2000 11:00:49 PM)
hopefully the school will approved the assistive listening device and also the program the school uses that is similiar to earbotics and fast forward
debbie (ID=121) (Aug 22, 2000 11:00:50 PM)
i have a meeting on monday for our 504 plan.
sherri (ID=123) (Aug 22, 2000 11:00:51 PM)
I have a very good speach path that has been with Michael since he was 3
debbie (ID=121) (Aug 22, 2000 11:01:04 PM)
where are you from Tracy that it is still afternoon? I'm in florida
drewk (ID=124) (Aug 22, 2000 11:01:20 PM)
Rose, just a word of advice get started immediately. It will take months before the districts will get around to revising that IEP
Tracy (ID=125) (Aug 22, 2000 11:01:26 PM)
In New Zealand , down under!
sherri (ID=123) (Aug 22, 2000 11:01:57 PM)
last year Michael had a head set last year and he played with it to much
bren (ID=117) (Aug 22, 2000 11:01:58 PM)
Wow..its neat to have someone from there down here...lol
debbie (ID=121) (Aug 22, 2000 11:02:06 PM)
wow!! it's great to have you join us tonight! so tell us...is there a public awareness of capd down under?
Rose (ID=107) (Aug 22, 2000 11:02:16 PM)
It won't happen until at least October I know that, they have to complete numerous tests within 45 days of the start of school
Tracy (ID=125) (Aug 22, 2000 11:02:30 PM)
What time is it there? Though for sure I would have missed most discussion. To answer that: NONONONO< no t enough!
bren (ID=117) (Aug 22, 2000 11:02:45 PM)
How do you go about requesting the device sherri
debbie (ID=121) (Aug 22, 2000 11:02:51 PM)
it' is 11 pm EST in florida
debbie (ID=121) (Aug 22, 2000 11:02:57 PM)
on tuesday night
Tracy (ID=125) (Aug 22, 2000 11:03:25 PM)
ok, all looks good for wed, for everyone over there.!lol
bren (ID=117) (Aug 22, 2000 11:03:39 PM)
lol
sherri (ID=123) (Aug 22, 2000 11:03:40 PM)
his speach path is over the district and she does her home work and checks d istricts to
see
debbie (ID=121) (Aug 22, 2000 11:04:22 PM)
when i originally asked for the FM device for Sarah, I was told that she did not qualify for one since she was on a 504 plan and not on an IEP, I requested that the school document that for me along with the code in the school records that supported that. I was approved for the 504 two or three days later.
sherri (ID=123) (Aug 22, 2000 11:04:25 PM)
sorry she checks other districts to see what they are doing and she get on the internet alot
drewk (ID=124) (Aug 22, 2000 11:04:31 PM)
Keep on them. I am also the wicked mother of the school and I see the teachers ducking into their rooms when I enter the building. Do not sign anything until you feel comfortable and if possible consult with some body because no matter what they say about you can change your mind at any time I have to believe that this is frowned apon legally.
bren (ID=117) (Aug 22, 2000 11:04:31 PM)
thats good cuz when i brought that up they just gave me this weird look
debbie (ID=121) (Aug 22, 2000 11:04:59 PM)
i know i have changed my 504 plan part way through the year.
debbie (ID=121) (Aug 22, 2000 11:05:13 PM)
tracy, do you have a child with capd?
Tracy (ID=125) (Aug 22, 2000 11:05:25 PM)
I am the "kick butt mother" myself as of today!!!! Hooray!
Tracy (ID=125) (Aug 22, 2000 11:05:46 PM)
OOOOPs sorry I meant Kick Butt!
Rose (ID=107) (Aug 22, 2000 11:05:51 PM)
drewk it sounds as if your daughter already has an existing IEP am I correct?
drewk (ID=124) (Aug 22, 2000 11:06:06 PM)
yes
Tracy (ID=125) (Aug 22, 2000 11:06:35 PM)
Oh I get it, the editor replaces certain words............. I am really not this odd.
Rose (ID=107) (Aug 22, 2000 11:06:42 PM)
so what is wrong with it currently and what needs to be done to correct in your point of view
debbie (ID=121) (Aug 22, 2000 11:06:48 PM)
KickLove you too? *LOL* does that translate to mother from hell
debbie (ID=121) (Aug 22, 2000 11:07:11 PM)
oops...LOL..i forgot abotu that Tracy, i was showing some friends the editor in here **LOL*
bren (ID=117) (Aug 22, 2000 11:07:18 PM)
i have an IEP and a 504 but need to know what to do to get a request for a fm device
Rose (ID=107) (Aug 22, 2000 11:07:18 PM)
I think we are all the mothers from hell as far as the schools are concerned
bren (ID=117) (Aug 22, 2000 11:07:27 PM)
LOL!!!
debbie (ID=121) (Aug 22, 2000 11:07:32 PM)
i fixed that!!!*LOL*
bren (ID=117) (Aug 22, 2000 11:07:40 PM)
and fathers too!
Tracy (ID=125) (Aug 22, 2000 11:07:55 PM)
Yes, I have a child (Zoe ) with suspected CAPD, and today.... I managed to get an OT to see her sooner than the 7 months later original request!
Rose (ID=107) (Aug 22, 2000 11:08:00 PM)
Well first of all bren was it recommended in writing by an audiologist?
debbie (ID=121) (Aug 22, 2000 11:08:04 PM)
i substituted "butt" for "love you too" in the editor!!!
Tracy (ID=125) (Aug 22, 2000 11:08:13 PM)
YES!!!!!!!!!!!!!!!!!!!!!
Tracy (ID=125) (Aug 22, 2000 11:08:31 PM)
I thought it was my typing skills!
sherri (ID=123) (Aug 22, 2000 11:08:43 PM)
we are in a small district and I am always seed as pie to them even bring them cookies
debbie (ID=121) (Aug 22, 2000 11:08:54 PM)
I thought maybe it was a down under saying and that I was just being slow. *LOL*
Tracy (ID=125) (Aug 22, 2000 11:09:05 PM)
Why do you have a duckface?
drewk (ID=124) (Aug 22, 2000 11:09:12 PM)
My daughter's IEP needs to have what the psychologists and psychiatrists as well as the neurologists have said and that is one-on-one asssitance to help her reiterate all of the material that she has taken in through the day. Repition is everything in the world of CAPD as most studies show.
Rose (ID=107) (Aug 22, 2000 11:09:28 PM)
same reason I have lips now
debbie (ID=121) (Aug 22, 2000 11:09:35 PM)
if you click on settings, you can choose a icon for by your name. I always use the duck since im the chat host
bren (ID=117) (Aug 22, 2000 11:09:45 PM)
rose no it wasnt..i mean it was suggested as a good idea to help her but nothing in writing
Tracy (ID=125) (Aug 22, 2000 11:09:48 PM)
OOOOHHHHHHHHHHH,,, here goes
debbie (ID=121) (Aug 22, 2000 11:09:51 PM)
(represents my confused look all the time)
Tracy (ID=125) (Aug 22, 2000 11:10:19 PM)
how's this?
debbie (ID=121) (Aug 22, 2000 11:10:22 PM)
there you go tracy!
bren (ID=117) (Aug 22, 2000 11:10:28 PM)
LOL!!!
Rose (ID=107) (Aug 22, 2000 11:10:29 PM)
get it in writing and present it to the school along with your written request for her to be evaluated by the school for a trial
debbie (ID=121) (Aug 22, 2000 11:10:50 PM)
drewk what reason has the school given for not providing it?
Tracy (ID=125) (Aug 22, 2000 11:10:51 PM)
where is everyone else?
Rose (ID=107) (Aug 22, 2000 11:11:26 PM)
drewk whatever the reason is I'm certain it is really based on money and their desire not to spend it
bren (ID=117) (Aug 22, 2000 11:11:45 PM)
will the speech and language at the school usually side with this idea
debbie (ID=121) (Aug 22, 2000 11:11:46 PM)
Tracy has your daughter seen and aud?
drewk (ID=124) (Aug 22, 2000 11:11:47 PM)
The district believes that she is not bad enough to get this type of assistance
Tracy (ID=125) (Aug 22, 2000 11:12:18 PM)
no we've been told here that they won't recommend an audiologist until she's 7
debbie (ID=121) (Aug 22, 2000 11:12:26 PM)
bad enough??? is your daughter getting good grades?
debbie (ID=121) (Aug 22, 2000 11:12:33 PM)
how old is she Tracy?
drewk (ID=124) (Aug 22, 2000 11:12:47 PM)
The districts are all in KAHOOTS AND THEY WILL STICK UP FOR EACH OTHER IN FEAR OF LOSING THEIR JOB AND MONEY IN THE DISTRICTS
Tracy (ID=125) (Aug 22, 2000 11:12:49 PM)
she's 5.5
Rose (ID=107) (Aug 22, 2000 11:12:58 PM)
but if you get your child declared disabled by SSI then they are provided with this at no cost to the school district(it is either provided by the government)
bren (ID=117) (Aug 22, 2000 11:13:15 PM)
i am with you there drew...they seem to thin that too here
drewk (ID=124) (Aug 22, 2000 11:13:44 PM)
mY DAUGHTER IS GETTING POOR GRADES
bren (ID=117) (Aug 22, 2000 11:13:50 PM)
i thought that SSi di not consider CAPD a disability
Tracy (ID=125) (Aug 22, 2000 11:14:15 PM)
Zoe began school this April, and she too is not "bad enough" to warrant one on one therapy.
debbie (ID=121) (Aug 22, 2000 11:14:25 PM)
contact your state department of education and get a copy of the guidelines they have to meet to qualify for help.
drewk (ID=124) (Aug 22, 2000 11:14:47 PM)
My literature(that I will have to dig out of one of my piles) states that this disablitiy is protected by the ADA
debbie (ID=121) (Aug 22, 2000 11:15:20 PM)
drewk, i do understand your frustration, my school is slowly starting to give me help, but it's been a long road, I was originally told that Sarah would be allowed to slip through the cracks and go unhelped.
sherri (ID=126) (Aug 22, 2000 11:15:23 PM)
(This user has entered CAPD: From the Heart)
Rose (ID=107) (Aug 22, 2000 11:15:24 PM)
I am in this process with my son now, he has been declared disabled and now has a medical card in addition to my insurance we are now working out getting him a TSS(please don't ask me exactly what that stands for, but it is like a one-on-one aide)
bren (ID=117) (Aug 22, 2000 11:15:28 PM)
I did not know that..thanx
Tracy (ID=125) (Aug 22, 2000 11:16:06 PM)
We do have a teacher's aid for Zoe, but those hours are slowly being cut back, term by term.]
debbie (ID=121) (Aug 22, 2000 11:16:16 PM)
i dont think capd is specifically mentioned in the ADA, but it should qualify under that part where it refers to any disability that affects a major life function
Tracy (ID=125) (Aug 22, 2000 11:16:33 PM)
Off to meet the bus, right back!
debbie (ID=121) (Aug 22, 2000 11:16:39 PM)
ok Tracy
debbie (ID=121) (Aug 22, 2000 11:16:53 PM)
drewk....does your daughter have problems other than CAPD?
drewk (ID=124) (Aug 22, 2000 11:16:59 PM)
I have been guaranteed so many times that she would not slip through the cracks it makes me sick and at each meeting I tell them that she is slowly and that they don't care to see it.
Rose (ID=107) (Aug 22, 2000 11:17:18 PM)
especially if it is affecting the childs ability to learn s in drewk's case the child is significantly behind his/her peers
Rose (ID=107) (Aug 22, 2000 11:17:56 PM)
it should make them eligible for help
debbie (ID=121) (Aug 22, 2000 11:18:20 PM)
get a history of all the tests the school has done on your daughter. Compile them in a graph that shows where she is today compared to where shes been in the past. show how her scores have gone down and are getting worse. Put the scores visually in front of them
Rose (ID=107) (Aug 22, 2000 11:18:55 PM)
in our state(PA) all you need is a doctors letter declasring your child disabled to apply for medicaid under the waiver that doesn't count income for eligibility
sherri (ID=126) (Aug 22, 2000 11:18:56 PM)
this summer I sent Micheael to a college for one on one reading program it was a college for teachers and he will also go this fall
debbie (ID=121) (Aug 22, 2000 11:18:58 PM)
what modifications are on her IEP now?
drewk (ID=124) (Aug 22, 2000 11:19:17 PM)
I don't think I can answer that completely. I have seen so many professionals and that their conclusions are so unanswered. I love how each one of those so called professionals use this big word called "linguistic"
debbie (ID=121) (Aug 22, 2000 11:20:04 PM)
i guess what i'm asking is how did your daughter qualify for the IEP?
Rose (ID=107) (Aug 22, 2000 11:20:10 PM)
my advocate fought for and got my son extended year school services this summer
Rose (ID=107) (Aug 22, 2000 11:21:19 PM)
he was eligible due to the fact that the school itself indicated on several reports that my son has difficulty retaining information from one day to the next
debbie (ID=121) (Aug 22, 2000 11:21:21 PM)
let me ask you drewk............have you ever had a cast on an arm or leg?
drewk (ID=124) (Aug 22, 2000 11:21:53 PM)
I got the extended school year for my daughter for the last 3 years and this year was the worst. She would come home and tell me that she watched movies like the Bicentennial Man which is a 2 hour movie and summer school was only 3 hours. I complained and complained and it did not good
bren (ID=117) (Aug 22, 2000 11:22:25 PM)
hey i got to go and get ready for MY school tomorrow... i have enjoyed the talk and i hope to talk again soon...when do you plan on having the next chat
Rose (ID=107) (Aug 22, 2000 11:22:26 PM)
did you go to the school to observe?
drewk (ID=124) (Aug 22, 2000 11:22:26 PM)
No I have not had a cast please explain
debbie (ID=121) (Aug 22, 2000 11:22:39 PM)
bye bren! talk to you soon!
sherri (ID=126) (Aug 22, 2000 11:22:58 PM)
by bren
debbie (ID=121) (Aug 22, 2000 11:23:10 PM)
drewk what i am getting at is....have you ever known a doctor to put a cast on an arm or leg that was not injured in some way? usually broke?
Rose (ID=107) (Aug 22, 2000 11:24:03 PM)
my sons school was a 4 hour day that involved reading ect. and I correspoded with the teacher daily to find out what he was working on each day
drewk (ID=124) (Aug 22, 2000 11:24:43 PM)
Yes I hid behind the doors so I was not seen. The day I went I seen that they were watching Star Wars. If I had pulled her out of summer school the school district would have come back to me stating that I was offered these services and that I was the one not taking advantage to helping my daughter. They love to reverse the blame
Rose (ID=107) (Aug 22, 2000 11:24:51 PM)
if I didn't feel the work was appropriate or on the correct level I would send examples of what he was working on at the end of the school year
debbie (ID=121) (Aug 22, 2000 11:24:56 PM)
Now....compare that cast to an IEP, why would the school put a child on an IEP unless a need had been demonstrated? NO Just like a doctor is not going to put a cast on just for the sake of it.
Rose (ID=107) (Aug 22, 2000 11:25:26 PM)
drewk you don't have a very good advocate sorry to say
Rose (ID=107) (Aug 22, 2000 11:26:39 PM)
ESY is suppose to be based on the individual child and if the program offered isn't appropriate than you can demand a private tutor or professional who is capable of addressing your childs needs
debbie (ID=121) (Aug 22, 2000 11:26:45 PM)
I am thoroughly convinced that my school gave my daughter a 504 because I was making so much noise, but now that I have the 504, the school must service my daughter!
Tracy (ID=125) (Aug 22, 2000 11:26:51 PM)
hi back from the bus stop! Zoe is painting a "Zoomey" (Just in case, something without legs and a great big smile!)
drewk (ID=124) (Aug 22, 2000 11:26:54 PM)
I know that is why I took the classes myself. I listen and tape all of the meetings and then come home to listen to the meetings again incase I missed something . This is all done prior to me signing any thing except that paper that states that I was present
debbie (ID=121) (Aug 22, 2000 11:27:25 PM)
welcome back Tracy
Tracy (ID=125) (Aug 22, 2000 11:27:31 PM)
thanks
Rose (ID=107) (Aug 22, 2000 11:27:55 PM)
funny you mentioned that the crazy school tried to use my signature of presence at a meeting to prove something totally unrelated
drewk (ID=124) (Aug 22, 2000 11:28:06 PM)
Has any one out there ever put their chold with CAPD on to the FASTFORWARD program?
Tracy (ID=125) (Aug 22, 2000 11:28:31 PM)
the US school system has alot of red tape attached, eh?
debbie (ID=121) (Aug 22, 2000 11:28:33 PM)
yes. i have drewk...Sarah did FFW at the same time she began using an FM trainer
debbie (ID=121) (Aug 22, 2000 11:28:39 PM)
yes Tracy!
Tracy (ID=125) (Aug 22, 2000 11:28:54 PM)
WE're doing Earobics.
sherri (ID=126) (Aug 22, 2000 11:28:58 PM)
don't they understand that you are trusting them with your child and that they need to do the right thing this is so upsetting
debbie (ID=121) (Aug 22, 2000 11:29:05 PM)
how do you like the earobics?
Rose (ID=107) (Aug 22, 2000 11:29:09 PM)
so you know for the future once the school district agrees about your childs eligibility for ESY they have to provide what is appropriate to meet their individual needs, if they deny a request you go to due process and will win
debbie (ID=121) (Aug 22, 2000 11:29:25 PM)
sherri, in defense of the schools..............
drewk (ID=124) (Aug 22, 2000 11:29:34 PM)
Debbie, do you think that it truly helped? My daughter is working with it now with only 13 days left
Tracy (ID=125) (Aug 22, 2000 11:29:39 PM)
So far ,so good. She love s Katie the Caterpillar, those bullfrogs are challenging though. as well as the rest
debbie (ID=121) (Aug 22, 2000 11:30:31 PM)
i sincerely believe that individuals who go into education truly do want to help our children, they have budgets to meet, guidelines they have to go by, etc.........we have to find a way to work in the guidelines.
debbie (ID=121) (Aug 22, 2000 11:30:50 PM)
yes drewk i do!! i think it was the combination of the two that helped.
debbie (ID=121) (Aug 22, 2000 11:31:14 PM)
Tracy, we have not done Earobics yet, although I've heard great things about it.
sherri (ID=126) (Aug 22, 2000 11:31:19 PM)
the school know that they have a child in thier hand and should know to have the childs best interest and what to do right with the child how could they sleep
Tracy (ID=125) (Aug 22, 2000 11:31:44 PM)
I found Fast forward to be very expensive, am I right?
Rose (ID=107) (Aug 22, 2000 11:31:53 PM)
I haven't tried either fast forward or earbotics yet but are awaiting approval on his eligibility for a similiar program that the school provides, maybe with medicaid i can get one of the other programs for home use
debbie (ID=121) (Aug 22, 2000 11:32:15 PM)
i cant believe i'm sitting here defending the schools...never thought that would happen. I"m not a big fan of my district at all.
debbie (ID=121) (Aug 22, 2000 11:32:30 PM)
yes Tracy it is expensive.
Rose (ID=107) (Aug 22, 2000 11:32:49 PM)
well Debbie I found it isn't the schools as a whole but cetain individuals that are the problem
drewk (ID=124) (Aug 22, 2000 11:33:07 PM)
The school district is to be starting a program that is to be lasting for a 2 year term called alphabet-something. it is linked with the FAstForward program I believe.
Tracy (ID=125) (Aug 22, 2000 11:33:18 PM)
Do schools pay for this programme?
debbie (ID=121) (Aug 22, 2000 11:33:28 PM)
unfortunately the people in the schools are not the ones who make the decisions...they have a job they have to do and they have to work within the guidelines they are given.....
Rose (ID=107) (Aug 22, 2000 11:33:32 PM)
as a matter of fact we have a scheduled meeting about my sons school tommorrow evening concerning many issues
debbie (ID=121) (Aug 22, 2000 11:33:40 PM)
some schools do pay..mine will not
sherri (ID=126) (Aug 22, 2000 11:33:58 PM)
Michael's school has one in speech class but would not let me use it at home
Rose (ID=107) (Aug 22, 2000 11:34:24 PM)
debbie that is true but often its inside the school problems not district ones, i know since i have always beenin the same district
debbie (ID=121) (Aug 22, 2000 11:34:25 PM)
sherri, would not let you use FFW at home?
drewk (ID=124) (Aug 22, 2000 11:35:04 PM)
I have gotten my school district affiliated with the Scottish Rite. Has any one ever been active with the Scottish Rite?
sherri (ID=126) (Aug 22, 2000 11:35:06 PM)
would not let me use the schools I sure I could buy my own$$$$$
Tracy (ID=125) (Aug 22, 2000 11:35:20 PM)
Does anyone have any great news about Sensory INtegration therapy.?
debbie (ID=121) (Aug 22, 2000 11:35:24 PM)
Rose I know last year I did not get along with one person on our child study team, and unfortunately she was the one who made the decision as to whether sarah got help or not
Rose (ID=107) (Aug 22, 2000 11:35:34 PM)
our problems are only in this one school, all other schools in our district were very accomodating to my childrens needs and never was I treated so badly
debbie (ID=121) (Aug 22, 2000 11:35:55 PM)
sherri, that may be part of the liscensing agreement with slc,,
Rose (ID=107) (Aug 22, 2000 11:36:16 PM)
not yet but my son is being evaluated for SID soon
drewk (ID=124) (Aug 22, 2000 11:36:17 PM)
My daughter also has sensory integration problems but do not rely on the occupational therapists at your school handle these problems--what a joke.
debbie (ID=121) (Aug 22, 2000 11:36:38 PM)
drewk....how is your daughter handling things?
Rose (ID=107) (Aug 22, 2000 11:36:44 PM)
no you have to go to outside OT who specializes in SID
Tracy (ID=125) (Aug 22, 2000 11:36:46 PM)
is it a computer programm, FFW?
Rose (ID=107) (Aug 22, 2000 11:37:02 PM)
schools can not handle it
sherri (ID=126) (Aug 22, 2000 11:37:05 PM)
oh I'm sure but they was not going to buy me one but I did'nt even know they had one when I went in to the class
debbie (ID=121) (Aug 22, 2000 11:37:19 PM)
yes it is tracy.....it's interactive andadjusts to the child's levels
drewk (ID=124) (Aug 22, 2000 11:37:32 PM)
My daughter is wonderful! She is the most passive and compassionate thing in the world. If not for her wonderful outlook, things would have slipped a long time ago
Tracy (ID=125) (Aug 22, 2000 11:37:40 PM)
OUCH I was hoping that wouldn't be the case. (about the OT)
debbie (ID=121) (Aug 22, 2000 11:37:56 PM)
your daughter is much like mine it sounds like.
Tracy (ID=125) (Aug 22, 2000 11:38:14 PM)
mine too
debbie (ID=121) (Aug 22, 2000 11:38:17 PM)
drewk...your daughter is lucky to have you in her corner
sherri (ID=126) (Aug 22, 2000 11:38:44 PM)
This summer Michael had a MRI has anyone else had to do this with their kids
debbie (ID=121) (Aug 22, 2000 11:39:07 PM)
no sherri i have not
Tracy (ID=125) (Aug 22, 2000 11:39:13 PM)
no
sherri (ID=126) (Aug 22, 2000 11:39:41 PM)
just to rule out CP and maybe tumers that could block ear to the brain information
drewk (ID=124) (Aug 22, 2000 11:39:44 PM)
I know and I am lucky to have her in my corner. this child has taught me more in life thatn life itself could have taught me. For one thing I have become such a bitch that I can honestly say that I am prud to be that for my daughter's sake
Rose (ID=107) (Aug 22, 2000 11:40:00 PM)
drewk if your daughter has multiple diagnosis as my son does I would go to your local welfare office and apply for medicaid under the exception for disabled children so they don't count your income, it is approved if SSI declares them disabled and all you need to bring is doctors reports of her disabilities(it helps if a doctor will declare her disabled on paper)
Rose (ID=107) (Aug 22, 2000 11:40:24 PM)
my son had an EEG and still needs to get an MRI done
debbie (ID=121) (Aug 22, 2000 11:40:36 PM)
we are going to be doing some electrophysiological testing this fall i believe. Sarah is going to participate in a research study at university of florida
drewk (ID=124) (Aug 22, 2000 11:40:46 PM)
My daughter went throught the EEG this last spring with only a slight imperfection.
sherri (ID=126) (Aug 22, 2000 11:41:07 PM)
what does a EEG tell you
Tracy (ID=125) (Aug 22, 2000 11:41:43 PM)
(sorry for jumping in ) what ages are your daughters?
Rose (ID=107) (Aug 22, 2000 11:42:04 PM)
Tracy although you will need to go outside the school for Ot to handle SI issues, the school has to pay for it since they can't provide the services your child needs(they don't have qualified OT's able to handle SI issues)
debbie (ID=121) (Aug 22, 2000 11:42:07 PM)
my daughter is 9..was diagnosed 2 1/2 years ago with CAPD
drewk (ID=124) (Aug 22, 2000 11:42:18 PM)
From what I could read in it the brain waves go along and spike up or down as does normal brain waves do. With my daughter's there was an evident "lull" signigying the underlying CAPD problem
Rose (ID=107) (Aug 22, 2000 11:42:26 PM)
my sons EEG was normal
Tracy (ID=125) (Aug 22, 2000 11:42:52 PM)
How do I know when I've found the right OT?
drewk (ID=124) (Aug 22, 2000 11:42:57 PM)
My daughter is 10 years
debbie (ID=121) (Aug 22, 2000 11:43:10 PM)
I apologize, but it is getting quite late here and I have to be going I hope to see you all in the chat next week!!
drewk (ID=124) (Aug 22, 2000 11:43:21 PM)
Tracy you will know in your gut and your heart. Always let those two guide you.
Tracy (ID=125) (Aug 22, 2000 11:43:24 PM)
Bye Debbie
debbie (ID=121) (Aug 22, 2000 11:43:33 PM)
bye Tracy!
sherri (ID=126) (Aug 22, 2000 11:43:50 PM)
The MRI gave me peace that we had not missed CP all this time and the guilt and if a tumer maybe we could take care of it
debbie (ID=121) (Aug 22, 2000 11:43:57 PM)
Rose, I'll catch you on AOL soon!/
Rose (ID=107) (Aug 22, 2000 11:44:02 PM)
when you find one who is capable of evaluating and treating SID, I'm still looking. Most places will tell you if they can or can't do this.
Rose (ID=107) (Aug 22, 2000 11:44:31 PM)
bye debbie if I can ever get on AOL, Thank god for prodigy or I wouldn't be there
Tracy (ID=125) (Aug 22, 2000 11:44:37 PM)
hmmmmmmmm.... my gut and heart haven't told me I've met anyone who understands CAPD here yet,.
sherri (ID=126) (Aug 22, 2000 11:45:16 PM)
drewk can you tell me what quilified you girl for disablity
Rose (ID=107) (Aug 22, 2000 11:45:28 PM)
tracy beleive me if anyone understands CAPD it is Debbie
drewk (ID=124) (Aug 22, 2000 11:45:36 PM)
WE understand CAPD as do we understand our children. It is the districts that do not understand our children.
Tracy (ID=125) (Aug 22, 2000 11:45:38 PM)
when I mention anything from the list serv, they look at me as though, I"m a crazed internet user willing to listen to anything I see or hear!
drewk (ID=124) (Aug 22, 2000 11:46:52 PM)
My daughter qualified from the many reports written by the many doctors that have tested and consluded theri findings.
Rose (ID=107) (Aug 22, 2000 11:47:03 PM)
Tracy an OT doesn't work with children who have CAPD unless they also have sensory issues the two aren't always related Ot is for sensory issues and speech/language therapists work with CAPD
sherri (ID=126) (Aug 22, 2000 11:47:12 PM)
Micahel will also start ADD med in a week or so
Tracy (ID=125) (Aug 22, 2000 11:47:42 PM)
oh............. is this discussion same time, weekly?
sherri (ID=126) (Aug 22, 2000 11:48:09 PM)
This summer Micahel had testing with a OT and PT they will both be at the IEP next week
Rose (ID=107) (Aug 22, 2000 11:48:28 PM)
sherri my son is also on medication for ADHD, but be careful many times kids get diagnosed with ADD when it is only CAPD
drewk (ID=124) (Aug 22, 2000 11:48:31 PM)
Sherri, how old is Michael
Tracy (ID=125) (Aug 22, 2000 11:48:47 PM)
my lovely daughter wants to play Earobics now! So I need to run. Thanks for the brief input, next time I"ll be a bit earlier!
sherri (ID=126) (Aug 22, 2000 11:49:03 PM)
Michael is 7 and 1st grade
sherri (ID=126) (Aug 22, 2000 11:49:13 PM)
by tracy
Rose (ID=107) (Aug 22, 2000 11:49:13 PM)
my son happens to be one of the few children i know who actually have both along with many other things to del with
Tracy (ID=125) (Aug 22, 2000 11:49:20 PM)
bye
Rose (ID=107) (Aug 22, 2000 11:49:30 PM)
bye tracy
Rose (ID=107) (Aug 22, 2000 11:49:41 PM)
deal I meant
Rose (ID=107) (Aug 22, 2000 11:50:51 PM)
sorry gang I have to run its really late we can meet here anytime though the room is always open for use
drewk (ID=124) (Aug 22, 2000 11:51:08 PM)
With all of my research I cannot find a conslusive to my next question. Can anyone tell me a somewhat close answer to what is the cause of to CAPD?
Rose (ID=107) (Aug 22, 2000 11:51:18 PM)
its just a matter of catching someone here
sherri (ID=126) (Aug 22, 2000 11:51:22 PM)
Micahel when to a Dr. who was a child develpmentalest who gave us a list of things that the school had to do this summer
Rose (ID=107) (Aug 22, 2000 11:52:29 PM)
It is abad connection between a childs ears and brain that causes them problems the actaul cause is unknown and can vary, it is beleived that frequent inner ear infections may be a cause
sherri (ID=126) (Aug 22, 2000 11:53:23 PM)
I just tell people that its like reading and comprohending sometimes you can read things and still not under stand what it is saying
Rose (ID=107) (Aug 22, 2000 11:53:25 PM)
but it isn't the only possible one
drewk (ID=124) (Aug 22, 2000 11:53:27 PM)
I know all of that but to me , very honestly, there has to be more. I know about the so-called' short circuit" but in all reality there has to be more
Rose (ID=107) (Aug 22, 2000 11:54:08 PM)
no not really think of CP no one knows really why some children have it and others don't
Rose (ID=107) (Aug 22, 2000 11:54:36 PM)
I have a neice and nephew both born prematurely as they are twins
sherri (ID=126) (Aug 22, 2000 11:54:41 PM)
The MRI was telling us that there was not any presure on the brain or the ear for the conection to stop
Rose (ID=107) (Aug 22, 2000 11:55:00 PM)
both had the same medical problems with different outcomes
drewk (ID=124) (Aug 22, 2000 11:55:07 PM)
There are times that I sit and think about what happened but I had the best pregnancy, the bewt delivery etc. I don't know why I beat myslef up
Rose (ID=107) (Aug 22, 2000 11:55:43 PM)
one develoed CP the other didn't, one is blind the other isn't
sherri (ID=126) (Aug 22, 2000 11:55:45 PM)
Michael's speech path tells me a lot of ear infections or forcepes at birth
Rose (ID=107) (Aug 22, 2000 11:56:06 PM)
my son had a lot of ear infections
drewk (ID=124) (Aug 22, 2000 11:58:03 PM)
Thanks guys for the evening chat and it was nice to finally sit down and correspond. My 5 year old wants me to tuck him in for the night. Hope to talk next time. My IEP is Friday and I will let everyone know what happened. Good night
sherri (ID=126) (Aug 22, 2000 11:58:04 PM)
in the back of my mind with so many ear infections maybe he is just behind in hearing
sherri (ID=126) (Aug 22, 2000 11:58:42 PM)
and he was not exposed to hearing with all of the infections
sherri (ID=126) (Aug 22, 2000 11:58:48 PM)
by drewk
Rose (ID=107) (Aug 23, 2000 12:00:10 AM)
think of it this way if a childs one eye sees well and the other one has limited vision it may not use the bad eye at all to see
Rose (ID=107) (Aug 23, 2000 12:01:03 AM)
so this is why childrens eyes are patched at times, to get the bad eye to develop vision even though the eye works it doesn't always mean you can see
sherri (ID=126) (Aug 23, 2000 12:01:11 AM)
but he can't see as well
sherri (ID=126) (Aug 23, 2000 12:01:42 AM)
it would be like a horse with blinders
Rose (ID=107) (Aug 23, 2000 12:01:57 AM)
if our kids hearing is impaired by ear infections frequently they aren't able to develop the ability for their brain to process the messages that the ears send
sherri (ID=126) (Aug 23, 2000 12:02:30 AM)
I agree
Rose (ID=107) (Aug 23, 2000 12:02:58 AM)
no not with the eye patched but ultimately when the bad eye develops vision it improves the vision when both eyes are used together
sherri (ID=126) (Aug 23, 2000 12:03:26 AM)
i just what to know will we still be struglling in high school
Rose (ID=107) (Aug 23, 2000 12:04:13 AM)
if left unpatched the dominate eye will take over all vision function and the bad eye will cease to be useful as although the eye may work it never developed a pathway to the brain
sherri (ID=126) (Aug 23, 2000 12:04:58 AM)
I hope we fighting a good fight for a short time
Rose (ID=107) (Aug 23, 2000 12:05:06 AM)
and will have no vision, our childrens pathway from ears to brain has been interupted during development and has to be retrained
sherri (ID=126) (Aug 23, 2000 12:05:58 AM)
it just sound so hard sometimes
Rose (ID=107) (Aug 23, 2000 12:06:08 AM)
right now it is not functioning properly and since my child is 8 I can't tryly answer that question
Rose (ID=107) (Aug 23, 2000 12:06:27 AM)
truely I meant
sherri (ID=126) (Aug 23, 2000 12:07:02 AM)
rose thanks for staying to talk but I better go
Rose (ID=107) (Aug 23, 2000 12:07:23 AM)
we all hope so but since CAPD is fairly new in recognition i don't know if there are any statistics to see where are kids may be as teenagers or adults
Rose (ID=107) (Aug 23, 2000 12:07:58 AM)
all we can do is hope for the best. good night Sherri i hope we meet again soon
sherri (ID=126) (Aug 23, 2000 12:08:03 AM)
I hope it is something they can grow out of
Rose (ID=107) (Aug 23, 2000 12:08:40 AM)
doubt that if I compair it to ADHD they never outgrow it just learn to compensate for it
