tiggerlyss, what you call meltdowns, I have called "crashes" if that's what we mean. I call a "crash" when the child falls apart, often crying, knowing something is wrong, being overwhlemed, etc. Then there is what I call "shutdown" when the child comes up with TOO MUCH sensory input that the child sort of freezes and may just sit there or may go off into "another world" (Isn't that the name of a soap opera ;-)
tiggerlyss (ID=15) (Jul 5, 2000 9:42:11 AM)
Dr J when my son gets like that I can't communicate at all with him and he retreats so much that he doesn't want to be touched
claudia (ID=19) (Jul 5, 2000 9:42:37 AM)
My daughter did this for 3 hours, regarding to a simple book report, she just sat there
claudia (ID=19) (Jul 5, 2000 9:42:43 AM)
and did nothing
tiggerlyss (ID=15) (Jul 5, 2000 9:43:58 AM)
My son will if put to a battle of wills, will just sit there but generally will allow himself (create a situation) in which he crashes
dr.j (ID=14) (Jul 5, 2000 9:44:23 AM)
Claudia, one thing that may help is to change the stimulus-response pattern here. For example, often children who are so time concerned often feel that they are OUT OF CONTROL with their lives. So, you can provide a clock for the child or a timer. Set the timer or set a specific "deadline" on the clock. For example, "You have from now (big hand on the 10) until the hand is on the 11 for do your work (that would be 5 minutes in this example). Then, when the child asks, "Is it time yet?" You merely can say one of the following: "Well, does the timer or clock say it's time yet?" or "What do you think when you look at the clock (or timer)?" Etc. The goal is to give the child a way to externally monitor his/her own time and not be so dependant on the adult who, the child may feel, is the ONLY person who can control the time. NOT ME! We want to give the child back the feeling of "ME, I can control the time."
claudia (ID=19) (Jul 5, 2000 9:45:33 AM)
I just want to cry
claudia (ID=19) (Jul 5, 2000 9:46:07 AM)
Recreation? What do you recommend Dr.
claudia (ID=19) (Jul 5, 2000 9:46:43 AM)
This is such a wonderful chat room Thank you all
debbie (ID=13) (Jul 5, 2000 9:47:39 AM)
Claudia...you are welcome..*hugs*....we are here to try and help one another... i hope you have joined the email list on the site to receive updates on chats
claudia (ID=19) (Jul 5, 2000 9:48:09 AM)
yes I have,
claudia (ID=19) (Jul 5, 2000 9:49:00 AM)
We all have smart kids but there are so many hurdles in their way
tiggerlyss (ID=15) (Jul 5, 2000 9:49:14 AM)
claudia...I understand the crying, There are times that I do because I get frustrated in not being to help Tyler
debbie (ID=13) (Jul 5, 2000 9:49:19 AM)
i've been looking though the bookstore on the site..if you enter the word sensitivity under a keyword search..there are many titles that come up....some of them pertain to sensitivity in children specifically
dr.j (ID=14) (Jul 5, 2000 9:49:22 AM)
tiggerlyss, you are right. This can happen if the problem is sensory oversensitivity. The child does NOT want to be touched, so, just stay nearby, express what you believe your child is feeling .... put those feelings to words so the child can learn, via modeling, how to express his/her feelings. For example, if you see your child is begining to "overload" stop putting more sensory information into the child's system. Then you might feel the child is "frustrated" so you can say "You look like you're frustrated. I don't like feeling frustrated; it hurts to be frustrated." Notice, somewhere, if we read our kids right. We're validating their feelings, giving them the words to express what they feel and we;re there for them. ANd, yes, claudia, it's hard and you want to cry, and, as a parent of an oversensitive child, often, after some of these difficult situations, I do go with my wife in our bedroom and sit and "cry."
claudia (ID=19) (Jul 5, 2000 9:49:57 AM)
Outsiders and even my own family dont understand
tiggerlyss (ID=15) (Jul 5, 2000 9:51:24 AM)
None of the family physically around me understands. When my son is with his grandparents he is able to "control" himself but when he gets home watch out
dr.j (ID=14) (Jul 5, 2000 9:51:26 AM)
claudia, no there are no more hurdles in their way then there are in the way of every child in the world. every person in the world. The diffierence, most people will help other kids over the hurdles, while for children with processing problems adults and others often build more hurdles and often do NOT help them around the hurdles because they are trying to help them CLIMB up when the best way around for the children is to crawl underneath (if you understand my analogy here)
debbie (ID=13) (Jul 5, 2000 9:52:26 AM)
claudia there are still many times that i sit and cry ..the night i started this website i sat at my computer and cried..it was the first night i ever talked to another parent of a child with capd
claudia (ID=19) (Jul 5, 2000 9:52:45 AM)
Under the hurdles I really like that term
tiggerlyss (ID=15) (Jul 5, 2000 9:53:23 AM)
Dr J ... are there any resources for helping a child find his own way to learn how to calm those raging emotions?
dr.j (ID=14) (Jul 5, 2000 9:53:24 AM)
Claudia, yes, you're right. Outsiders and other family members who don't live with children with processing issues do not understand, how can they? We don't even understand these children as professionals as a group. We need to stop looking at these kids as if they were a group and start looking at them as individuals and trying to look at the factors underlying the behaviors and not the behaviors that annoy us, embarase us, cause problems, etc. My wife has a wonderful way to put it......
Denise (ID=16) (Jul 5, 2000 9:53:37 AM)
Debbie what a wonderful place to go and have validation on this subject
claudia (ID=19) (Jul 5, 2000 9:53:37 AM)
I thank God for you Debbie
tiggerlyss (ID=15) (Jul 5, 2000 9:54:07 AM)
Debbie, this has become a godsend for me.
claudia (ID=19) (Jul 5, 2000 9:55:19 AM)
Dr. Could this have be could in the early stages of toddlers
Denise (ID=16) (Jul 5, 2000 9:55:35 AM)
me too
claudia (ID=19) (Jul 5, 2000 9:55:41 AM)
could this be found in the toddlers age
debbie (ID=13) (Jul 5, 2000 9:55:43 AM)
the parents in this chat as well as the wonderful professionals such as Dr J, are what keep me motivated and the good Lord above is the one who should be thanked =)
claudia (ID=19) (Jul 5, 2000 9:57:59 AM)
Well I got to go. But I will be back, Thanks for the Information My eyes are open to new
claudia (ID=19) (Jul 5, 2000 9:58:05 AM)
ideas
claudia (ID=19) (Jul 5, 2000 9:58:14 AM)
bye thanks again
debbie (ID=13) (Jul 5, 2000 9:58:17 AM)
claudia...i hope to chat with you soon!
Denise (ID=16) (Jul 5, 2000 9:58:28 AM)
Amen
Denise (ID=16) (Jul 5, 2000 9:59:16 AM)
Bye Claudia
dr.j (ID=14) (Jul 5, 2000 9:59:19 AM)
Everynight, after your really difficult children after a really difficult day go watch your child (in our case, our son) sound restfully sleeping. And then, reflect on how often during that day your child said "I love you" verbally or non-verbally and in any and all ways.
Denise (ID=16) (Jul 5, 2000 10:00:37 AM)
Dr. J is there a good time to call ?
dr.j (ID=14) (Jul 5, 2000 10:00:54 AM)
tiggerlyss, your questions about helping a child work on his/her emotional factors is in the relm of a child psychologist. I'd both suggest that's the place to go and say, from my own personal experiences, that's the right professional, just finding the professional who is family oriented and understands oversensitive children is the factor.
tiggerlyss (ID=15) (Jul 5, 2000 10:01:30 AM)
I do think of that every noght. The one thing that has helped me is the simulation of CAPD that I found on the web. Until I heard that, I understood my son's difficulties educationally but not emotionally
dr.j (ID=14) (Jul 5, 2000 10:01:31 AM)
Denise, if you wish to call me, usually the best time is in the afternoons from 1 - 4 pm eastern time.
tiggerlyss (ID=15) (Jul 5, 2000 10:01:40 AM)
Thank you Dr. J
debbie (ID=13) (Jul 5, 2000 10:01:53 AM)
last week i was at work and Sarah sent me a message online...now it's important to know that i really feel as if sarah has been making alot progress and doing well.........the message she sent me was "where is the remen chalking troll?"
debbie (ID=13) (Jul 5, 2000 10:02:03 AM)
i has no idea what she was trying to ask me..
dr.j (ID=14) (Jul 5, 2000 10:02:30 AM)
.oO(Push up)
Denise (ID=16) (Jul 5, 2000 10:02:51 AM)
Thank you Dr. J
tiggerlyss (ID=15) (Jul 5, 2000 10:03:21 AM)
Well I got to be going. My daughter's speech therapist will be here soon.
debbie (ID=13) (Jul 5, 2000 10:03:24 AM)
i had to ask sarah what she meant..i felt really silly when she replied "the thing you use for the tv"
debbie (ID=13) (Jul 5, 2000 10:03:40 AM)
take care tygerlyss....see you soon!
dr.j (ID=14) (Jul 5, 2000 10:03:54 AM)
tiggerlyss, bye for now. Hope to see you again on a chat or on the CAPD list.
tiggerlyss (ID=15) (Jul 5, 2000 10:04:14 AM)
Thanks everyone. It has helped me start my day off right. Bye
Denise (ID=16) (Jul 5, 2000 10:04:37 AM)
Bye tiggerlyss
Denise (ID=16) (Jul 5, 2000 10:05:13 AM)
I need to go also, thank you for a wonderful moring
debbie (ID=13) (Jul 5, 2000 10:05:29 AM)
goodbye Denise....have a wonderful day!
dr.j (ID=14) (Jul 5, 2000 10:06:14 AM)
debbie, now Sarah is correct ;-) there's a little troll inside the TV how has a piece of chalk and when you press the button on the remote, the troll writes the directions to the remens (the little men who work inside the TV) and the remens read the chalk marks of the troll thus, the remen chalking troll. (Just kidding) but what a wonderful way for Sarah to decode remote control.
debbie (ID=13) (Jul 5, 2000 10:07:37 AM)
When I finally figured out what Sarah was referring to at first I thought it was kind of funny (cute) then as I thought about it a bit longer it blew my mind...it really reminded me of the Little Red Riding Hood simulation online...I got really frustrated
dr.j (ID=14) (Jul 5, 2000 10:09:32 AM)
Debbie, I understand what you are expressing. It is cute (hence my comments) and I often love to see how the kids have figured out what they say. Often, they decode one way (not the exact message) and they try to make sense out of the misdecoded message by changing some other words or other things.
debbie (ID=13) (Jul 5, 2000 10:10:47 AM)
are you familiar with the little red riding hood simulation online?
dr.j (ID=14) (Jul 5, 2000 10:12:24 AM)
A great example is a comment from my son Chris (at the time of this comment he was, say, 5 or 6 years old). We had a tape of sing along songs for the car. One was Camptown Races. The actual words go "Camptown ladies sing this song, doo dah, doo dah. Camptown racetrack five miles long, all the doo dah day......." He sang it "Camptown race track sing this song, doo dah, doo dah. Camptown race track.....etc. " When I asked him (rather than correcting him), what the words to that song meant, here's what he said.
dr.j (ID=14) (Jul 5, 2000 10:14:16 AM)
"It's about a camp town (interpretation, a town in which people live in tents, etc. a campgrounds) and they have a race track which is silly for a camping town. SO, the first line of the song means "Can you imagine that this camping town has a race track, so sing along doo dah, doo dah. ANd did you know the race track is five miles long when the race goes no all day long."
dr.j (ID=14) (Jul 5, 2000 10:14:30 AM)
What he had decoded he tried to integrate and make sense out of.
debbie (ID=13) (Jul 5, 2000 10:14:56 AM)
I was feeling so good about the progress that I was seeing in Sarah, and I still do, but I think the remen chalking troll showed me how far we have to go.
yomammy (ID=20) (Jul 5, 2000 10:15:17 AM)
(This user has entered CAPD: From the Heart)
debbie (ID=13) (Jul 5, 2000 10:15:29 AM)
hi yomammy
dr.j (ID=14) (Jul 5, 2000 10:15:31 AM)
Debbie, I just received a phone call that I need to take. So, I'd better say good bye for now. SHall we pick up on Monday morning our regular time?
yomammy (ID=20) (Jul 5, 2000 10:15:35 AM)
hello anyone still here?
debbie (ID=13) (Jul 5, 2000 10:15:47 AM)
that sounds great Dr J....see you then....
debbie (ID=13) (Jul 5, 2000 10:16:03 AM)
I"m still here yomammy....=)
yomammy (ID=20) (Jul 5, 2000 10:16:05 AM)
hello i am a 22 yr old capd patient
debbie (ID=13) (Jul 5, 2000 10:16:21 AM)
how long have you known you have capd?
debbie (ID=13) (Jul 5, 2000 10:16:37 AM)
or should i ask. how long ago was capd diagnosed?
yomammy (ID=20) (Jul 5, 2000 10:16:44 AM)
it was late onset when i was 20
debbie (ID=13) (Jul 5, 2000 10:17:19 AM)
you didnt have any noticable trouble when you were younger?
yomammy (ID=20) (Jul 5, 2000 10:17:40 AM)
i had a brain tumor and was operated on in 98 i was in a coma for five months and when i woke up couln't hear right
yomammy (ID=20) (Jul 5, 2000 10:17:48 AM)
no
yomammy (ID=20) (Jul 5, 2000 10:17:57 AM)
can't walk right either
debbie (ID=13) (Jul 5, 2000 10:18:22 AM)
what type of help are you receiving for the processing problems?
yomammy (ID=20) (Jul 5, 2000 10:18:59 AM)
i wear a phonak digital hearing aid one of the new beam forming ones and have done fast for word
debbie (ID=13) (Jul 5, 2000 10:19:00 AM)
that's remarkable that you woke up after 5 months!!
yomammy (ID=20) (Jul 5, 2000 10:19:09 AM)
i know
yomammy (ID=20) (Jul 5, 2000 10:19:21 AM)
and i feel very lucky
debbie (ID=13) (Jul 5, 2000 10:19:53 AM)
gosh i have millions of questions i could ask you....but did you have questions you wanted to ask?
debbie (ID=13) (Jul 5, 2000 10:20:19 AM)
may i ask where you are from?
yomammy (ID=20) (Jul 5, 2000 10:21:00 AM)
i wanted to wake up intime for this chat but my alarm clock does not go off. not really but i would like to give you my web addrdess i am from minnesota luckely since i was lucky enough to be at st mary's hospital
debbie (ID=13) (Jul 5, 2000 10:21:44 AM)
i'd love to have the address.....we do have evening chats also =) there will be one tomorrow night from 8 to 10 pm EST
debbie (ID=13) (Jul 5, 2000 10:21:51 AM)
is your website on capd?
debbie (ID=13) (Jul 5, 2000 10:22:16 AM)
alot of my family is from minnesota..im originally from iowa although now i live in florida
yomammy (ID=20) (Jul 5, 2000 10:22:19 AM)
www.seee.org not spessifically on capd
yomammy (ID=20) (Jul 5, 2000 10:22:39 AM)
thats a possitive move from iowa
debbie (ID=13) (Jul 5, 2000 10:22:54 AM)
yes it was..i've been in the south for 12 years now
yomammy (ID=20) (Jul 5, 2000 10:23:52 AM)
he he. my site is on my organization known as Soceity for Equal Exposure in Entertainment
debbie (ID=13) (Jul 5, 2000 10:23:59 AM)
can you tell me a bit about seee?
debbie (ID=13) (Jul 5, 2000 10:24:10 AM)
im working now to open an nonprofit organization on capd
yomammy (ID=20) (Jul 5, 2000 10:24:42 AM)
yes we are striving for more captioning and other accomidations in media
debbie (ID=13) (Jul 5, 2000 10:24:56 AM)
are you a nonprofit organization?
yomammy (ID=20) (Jul 5, 2000 10:25:17 AM)
i want to have a kind of ad on for capd. not for profit
debbie (ID=13) (Jul 5, 2000 10:25:37 AM)
how long has your organization been in existence?
yomammy (ID=20) (Jul 5, 2000 10:25:46 AM)
2monthst
yomammy (ID=20) (Jul 5, 2000 10:26:05 AM)
we have named one of our audiology co chairs
debbie (ID=13) (Jul 5, 2000 10:26:20 AM)
how long did it take you to get started? have you filed the 501(c)3 status?
yomammy (ID=20) (Jul 5, 2000 10:26:44 AM)
Dr Dave Fabry PhD.
yomammy (ID=20) (Jul 5, 2000 10:27:13 AM)
no not status filed yet i need to find out more on that
debbie (ID=13) (Jul 5, 2000 10:27:26 AM)
i can get you the information on that if it would help you out
debbie (ID=13) (Jul 5, 2000 10:28:08 AM)
i have all the irs forms...but haven't filed yet...i'm still deciding who is going to be the third person on the board of directors..in florida we have to have a minimum of three
yomammy (ID=20) (Jul 5, 2000 10:28:12 AM)
it would help most certainly. i am currently doing step for word buth aided and unaided
debbie (ID=13) (Jul 5, 2000 10:28:36 AM)
let me get the website for you...do you have a moment?
yomammy (ID=20) (Jul 5, 2000 10:28:40 AM)
me myself and irene
yomammy (ID=20) (Jul 5, 2000 10:28:50 AM)
yes
debbie (ID=13) (Jul 5, 2000 10:29:26 AM)
http://www.irs.ustreas.gov/prod/bus_info/eo/eo-custsrv.html
debbie (ID=13) (Jul 5, 2000 10:29:43 AM)
do you have an email address i coudl send some information to?
debbie (ID=13) (Jul 5, 2000 10:30:05 AM)
i've done alot of research on nonprofit status..i'd be more than happy to share
yomammy (ID=20) (Jul 5, 2000 10:30:29 AM)
yes yomammyrr @go.com or soon michael1@seee.org
yomammy (ID=20) (Jul 5, 2000 10:31:15 AM)
dang space bar
debbie (ID=13) (Jul 5, 2000 10:31:29 AM)
i've been hesitant to file the paperwork on the nonprofit...
yomammy (ID=20) (Jul 5, 2000 10:31:40 AM)
why?
debbie (ID=13) (Jul 5, 2000 10:32:50 AM)
good question.....wanting to make sure i have everything right so i dont let anyone down
yomammy (ID=20) (Jul 5, 2000 10:32:56 AM)
on that website where do i go for nonprof info
yomammy (ID=20) (Jul 5, 2000 10:33:54 AM)
im being very careful aswell i have been concerned with seeming like im out to proffit when im not
debbie (ID=13) (Jul 5, 2000 10:34:40 AM)
i just sent you some information via email..just a list of 4 sites.... on the first site i sent in here..there is a 1-800 number you can call and they will mail you hard copies of allthe forms you need to file for the 501(c)3 status
debbie (ID=13) (Jul 5, 2000 10:35:08 AM)
my other concern is the funding it takes to run a non profit and if what im doing is a viable option...
yomammy (ID=20) (Jul 5, 2000 10:35:53 AM)
there are so few capd people thats why i went for entertainment
debbie (ID=13) (Jul 5, 2000 10:36:37 AM)
there are more people with capd than what most realize..it' s just a matter of finding each other and demanding public awareness to this disorder.
yomammy (ID=20) (Jul 5, 2000 10:36:39 AM)
sensorineural is much more common
debbie (ID=13) (Jul 5, 2000 10:36:57 AM)
my daughter who is 9 was diagnosed capd 2 1/2 years ago.
yomammy (ID=20) (Jul 5, 2000 10:37:13 AM)
do you know anyone around my age
debbie (ID=13) (Jul 5, 2000 10:37:27 AM)
i use to think there were very few people with capd..until i started this site 1 year ago.
yomammy (ID=20) (Jul 5, 2000 10:37:52 AM)
i bet
debbie (ID=13) (Jul 5, 2000 10:38:16 AM)
there is a story on my website called "I Listen With My Heart" by Lara Harding...she is 23 I believe..she has capd and some other physical impairments.
yomammy (ID=20) (Jul 5, 2000 10:38:43 AM)
how is she doing
debbie (ID=13) (Jul 5, 2000 10:39:27 AM)
she's had capd since she was very young....she is doing great..she's going to college..she still struggles..but is very outspoken about her capd....
yomammy (ID=20) (Jul 5, 2000 10:39:29 AM)
is your daughter or anyone trying ffw
debbie (ID=13) (Jul 5, 2000 10:39:37 AM)
may i ask...how are you doing?
debbie (ID=13) (Jul 5, 2000 10:40:24 AM)
my daughter went through FFW last fall...we just went through a capd reevaluation a few weeks ago....
yomammy (ID=20) (Jul 5, 2000 10:40:28 AM)
im doing very well i am applying for a job i will not likely get as the executive director of the mncdhh
debbie (ID=13) (Jul 5, 2000 10:40:43 AM)
what is the mncdhh?
yomammy (ID=20) (Jul 5, 2000 10:41:14 AM)
how did it work for her. MN commission for the hard of hearing and deaf
yomammy (ID=20) (Jul 5, 2000 10:41:34 AM)
it has helped me greatly
yomammy (ID=20) (Jul 5, 2000 10:41:43 AM)
step for word is better
debbie (ID=13) (Jul 5, 2000 10:41:50 AM)
my daughter also uses a FM Easy Listener in school.....we are seeing some progress in some areas but still struggles with integrations deficits
yomammy (ID=20) (Jul 5, 2000 10:42:13 AM)
did she do it aided or unaided
debbie (ID=13) (Jul 5, 2000 10:42:13 AM)
we've not done the step forword
debbie (ID=13) (Jul 5, 2000 10:42:26 AM)
what do you mean?
yomammy (ID=20) (Jul 5, 2000 10:42:42 AM)
i reccomend step i mean with or without hearing aid
debbie (ID=13) (Jul 5, 2000 10:43:16 AM)
i monitored the program at home with her...she uses an FM but not the hearing aid....she wore headphones while doing FFw
yomammy (ID=20) (Jul 5, 2000 10:43:51 AM)
headphones were no good for me
debbie (ID=13) (Jul 5, 2000 10:43:55 AM)
although my daughter had capd she does not have any hearing loss
yomammy (ID=20) (Jul 5, 2000 10:44:12 AM)
really
debbie (ID=13) (Jul 5, 2000 10:44:15 AM)
that's what took so long to diagnose her capd....we went to aud for 4 years
yomammy (ID=20) (Jul 5, 2000 10:44:42 AM)
what do you mean by hearing loss there is no loss in my ears but idon't underestand speach well
debbie (ID=13) (Jul 5, 2000 10:45:05 AM)
i have a phone call ...will be just a sec
debbie (ID=13) (Jul 5, 2000 10:46:36 AM)
you said you wear a hearing aid..do you have a hearing loss?
debbie (ID=13) (Jul 5, 2000 10:47:38 AM)
or did i misunderstand? i thought you had a hearing loss in addition to the capd
yomammy (ID=20) (Jul 5, 2000 10:47:42 AM)
yes i do there is no technical ear type hearing loss but it helps
yomammy (ID=20) (Jul 5, 2000 10:47:59 AM)
no no realy\
yomammy (ID=20) (Jul 5, 2000 10:48:31 AM)
not sensorineural hearing loss
debbie (ID=13) (Jul 5, 2000 10:49:03 AM)
oh ok..sorry i misunderstood
debbie (ID=13) (Jul 5, 2000 10:49:28 AM)
may i ask..what do you find most frustrating about the capd?
yomammy (ID=20) (Jul 5, 2000 10:50:31 AM)
well my capd is accompanied by vestibular balance problems and i think its the combination of the two
yomammy (ID=20) (Jul 5, 2000 10:50:59 AM)
keeps me bottled up at home
yomammy (ID=20) (Jul 5, 2000 10:52:10 AM)
kept me in a wheel chair for 8 months iam constantly thinking about how there are so many others who have it worse
debbie (ID=13) (Jul 5, 2000 10:52:27 AM)
sorry for delay....
debbie (ID=13) (Jul 5, 2000 10:53:03 AM)
you are to be commended for reaching out to help others......
yomammy (ID=20) (Jul 5, 2000 10:53:12 AM)
not a problem got 5 other windows goin
yomammy (ID=20) (Jul 5, 2000 10:53:46 AM)
thank you very much i want to help others and myself at the same time
debbie (ID=13) (Jul 5, 2000 10:54:01 AM)
that's they way i felt when i started this site...
debbie (ID=13) (Jul 5, 2000 10:54:35 AM)
would you ever be interested in talking to family members of those affected by capd in one of the open chats?
yomammy (ID=20) (Jul 5, 2000 10:54:43 AM)
i bet. it must be awful to be the parent of a little one with this awful dissorder
yomammy (ID=20) (Jul 5, 2000 10:55:37 AM)
yes i would i would love some essays on capd from people like that or those afflicted themselves
debbie (ID=13) (Jul 5, 2000 10:56:02 AM)
the disorder is frustrating ,,but Sarah is a remarkable little girl..she knows she had capd and that she dont process everything right,,,but we've told her it's just like wearing glasses and not seeing right....God made each of us special and unique...
yomammy (ID=20) (Jul 5, 2000 10:56:55 AM)
yes and Fast for Word is just like glasses for the ears
debbie (ID=13) (Jul 5, 2000 10:57:08 AM)
talking to parents, i can express my feelings and what i see in my child with capd,,but i cant explain to them what it is like to have capd....you can offer the parents a unique perspective that i cant
debbie (ID=13) (Jul 5, 2000 10:57:15 AM)
very good anaology
yomammy (ID=20) (Jul 5, 2000 10:57:38 AM)
thats not mine
debbie (ID=13) (Jul 5, 2000 10:58:22 AM)
but it explains it so well....my daughter firmly believes she can be anything she wants to when she grows up..she may just have to work a bit harder....she has a very posotive attitude
debbie (ID=13) (Jul 5, 2000 10:58:55 AM)
did i see earlier your name is Michael?
yomammy (ID=20) (Jul 5, 2000 10:58:58 AM)
has your daughter been afflicted since birth
yomammy (ID=20) (Jul 5, 2000 10:59:03 AM)
yes
yomammy (ID=20) (Jul 5, 2000 11:00:16 AM)
im sorry if thats already been established
debbie (ID=13) (Jul 5, 2000 11:00:42 AM)
we first noticed her having problems about 1 1/2 to 2 years of age
debbie (ID=13) (Jul 5, 2000 11:00:55 AM)
we noticed a speech delay and i suspected hearing loss....
yomammy (ID=20) (Jul 5, 2000 11:01:17 AM)
huh that must have been very hard
debbie (ID=13) (Jul 5, 2000 11:01:24 AM)
i knew there was somehting wrong but didnt know what....whenever i asked the pediatrician,,i was told different kids develop differently
yomammy (ID=20) (Jul 5, 2000 11:01:33 AM)
how did she learn to speek?
debbie (ID=13) (Jul 5, 2000 11:01:36 AM)
frustrating....
yomammy (ID=20) (Jul 5, 2000 11:02:08 AM)
yeah im so glad to have mayo around here
debbie (ID=13) (Jul 5, 2000 11:02:22 AM)
she spoke,,but her speech was delayed..she learned to talk later than most..said fewer words than most kids..she liked to speak in a very garbled manner...it drove me nuts..*L*
yomammy (ID=20) (Jul 5, 2000 11:02:22 AM)
thank my lucky stars
debbie (ID=13) (Jul 5, 2000 11:02:47 AM)
i've been to the mayo in rochester myself...they have excellent doctors there
debbie (ID=13) (Jul 5, 2000 11:03:16 AM)
i saw some orthopedic specialists there back in 1983...
yomammy (ID=20) (Jul 5, 2000 11:03:43 AM)
i bet. its frustrating to not understand. yes they do but its the mayo way of doing things that makes it so good
debbie (ID=13) (Jul 5, 2000 11:03:48 AM)
does your family understand your processing disorder?
yomammy (ID=20) (Jul 5, 2000 11:04:13 AM)
they try to as do my friends
debbie (ID=13) (Jul 5, 2000 11:04:37 AM)
my family is supportive..but i dont think they really understand capd
yomammy (ID=20) (Jul 5, 2000 11:04:55 AM)
no one does i sure as heck don't
debbie (ID=13) (Jul 5, 2000 11:05:15 AM)
are you on the listserv by dr J?
yomammy (ID=20) (Jul 5, 2000 11:05:39 AM)
we try but there is no way. dr j listserv? im on bh and bhnews
yomammy (ID=20) (Jul 5, 2000 11:06:17 AM)
i got on one about these chats
debbie (ID=13) (Jul 5, 2000 11:06:28 AM)
Dr J that was here earlier is a professor at Galludet University in Washington DC...he runs a listserv on CAPD that is phemonenal
debbie (ID=13) (Jul 5, 2000 11:07:09 AM)
there is so much good information put out by parents and professionals....you may want to join ...there is alot of email though!! be prepared!
yomammy (ID=20) (Jul 5, 2000 11:07:10 AM)
i think thats the guy dr dave was telling me to get a hold of that guy
yomammy (ID=20) (Jul 5, 2000 11:07:42 AM)
where do i go to sign up
debbie (ID=13) (Jul 5, 2000 11:07:49 AM)
Dr J is going to be sitting on the board of directors for the non profit i am starting..he is extremely knowledgable about capd..he's been a godsend to me..
debbie (ID=13) (Jul 5, 2000 11:08:08 AM)
let me get you the addy.....or you can click on the lime green banner up above when it comes up
yomammy (ID=20) (Jul 5, 2000 11:08:49 AM)
do you know of dr dave? he's wonderful
debbie (ID=13) (Jul 5, 2000 11:09:21 AM)
no i dont...does he have an email addy that you can give out? I'd enjoy corresponding with him
debbie (ID=13) (Jul 5, 2000 11:09:33 AM)
the addy for the st john's listserve is http://maelstrom.stjohns.edu/archives/index.html
debbie (ID=13) (Jul 5, 2000 11:09:45 AM)
they have lists for about everything!!!! it's greta
debbie (ID=13) (Jul 5, 2000 11:09:47 AM)
oops great
debbie (ID=13) (Jul 5, 2000 11:10:24 AM)
there may be some other lists there that you may find helpful since you are facing more issues than capd
yomammy (ID=20) (Jul 5, 2000 11:10:27 AM)
not yet but soon i want to set one up for him soon and the other co chair as soon as i announce he/she
debbie (ID=13) (Jul 5, 2000 11:11:06 AM)
do you have to have a minimum number of people on your board in the state of minnesota?
yomammy (ID=20) (Jul 5, 2000 11:11:25 AM)
dunno
debbie (ID=13) (Jul 5, 2000 11:12:19 AM)
if i may give you a bit of advice..before you accept any funds for anything..check with the state..there are forms you have to fill out before you accept any contibutions or funds of any kind....
yomammy (ID=20) (Jul 5, 2000 11:12:49 AM)
thanks
debbie (ID=13) (Jul 5, 2000 11:13:10 AM)
you usually not only have to file the IRS forms,,but state..the state forms in florida are very brief..but that's what makes you the legal entitiy
yomammy (ID=20) (Jul 5, 2000 11:13:36 AM)
i havent is all out of pocket so far
debbie (ID=13) (Jul 5, 2000 11:14:00 AM)
same here..i've been paying for this chat and everything so far....
yomammy (ID=20) (Jul 5, 2000 11:14:17 AM)
how much
debbie (ID=13) (Jul 5, 2000 11:14:20 AM)
but you also have to reserve your business name...
yomammy (ID=20) (Jul 5, 2000 11:14:49 AM)
been wabtin to
debbie (ID=13) (Jul 5, 2000 11:14:55 AM)
how much for this chat?
yomammy (ID=20) (Jul 5, 2000 11:15:04 AM)
ya
debbie (ID=13) (Jul 5, 2000 11:15:17 AM)
i'll tell you that privately....hold on..
yomammy (ID=20) (Jul 5, 2000 11:15:57 AM)
.......
yomammy (ID=20) (Jul 5, 2000 11:16:46 AM)
sealed
debbie (ID=13) (Jul 5, 2000 11:16:55 AM)
thank you...=)
yomammy (ID=20) (Jul 5, 2000 11:17:08 AM)
cool
debbie (ID=13) (Jul 5, 2000 11:17:48 AM)
by the way..i do archive the transcripts to all chats...do you mind if this conversation is included..i know it includes some personal information....and i'll leave that choice to you...
yomammy (ID=20) (Jul 5, 2000 11:18:15 AM)
i must go now
debbie (ID=13) (Jul 5, 2000 11:18:33 AM)
ok..i hope you keep in touch...if i can help any way..please let me know!
yomammy (ID=20) (Jul 5, 2000 11:18:37 AM)
yes include
debbie (ID=13) (Jul 5, 2000 11:18:42 AM)
ok..thank you....
debbie (ID=13) (Jul 5, 2000 11:18:57 AM)
have a great day!!
debbie (ID=21) (Jul 5, 2000 11:34:36 AM)
(This user has entered CAPD: From the Heart)
debbie (ID=22) (Jul 5, 2000 12:26:21 PM)
(This user has entered CAPD: From the Heart)
debbie (ID=23) (Jul 5, 2000 3:04:58 PM)
(This user has entered CAPD: From the Heart)
Dorien (ID=24) (Jul 5, 2000 4:09:31 PM)
(This user has entered CAPD: From the Heart)
Barbara (ID=25) (Jul 5, 2000 11:38:43 PM)
(This user has entered CAPD: From the Heart)
