Re: (unknown)

[Guest guest]

, how far are you from the iowa border? in iowa

city is University of Iowa Hospital and Clinics, and

then the Hospital School now named the Center for

Disabilities and Development, they care for and

research many kinds of disabilities including dsand

autism right there. Anyways if you are interested i

can give you their number and names of the people to

talk to, its even a tollfree numbber, oh and their

emails too, often we talk this way because im 4hours

from them, but they have helped us tremendously over

the years, snce nathan was a babe, in ALL areas. Its

great to meet someone in the middle (landluvoer)like

me everyone else practically lives on the

coastlines,lol. They will do a minimum of two week

behavior session (if meets behavior criteriea) which

it sounds like he does---and this session is long but

sorks very very well, first they spend a few days

letting child misbehave figuring out what causes etc,

then the hard work comes in training child and parent

how to stop behavior and stopping behavoir some too,

they tape all their biobehavior sesseions, and will

send one home for you and school, respite, whoever

needs it to see how they do things to stop behavior

and learn appropriate behavior, and will send a

complete written guideline to go by too. and while at

hospital school doing this your child wont miss out on

any schooling etc either, they atten education and rec

and activitiy therapy too, will see the social worker

too, jim is the OP one cant remember the IP one,

anyways these guys id swear id would marry one if i

want totally inlove and married to hubby,lol. Any

concerns or hlep questions whatever they make sure to

get all the info and hlep set up appts. whatever you

need. shawna.

=====

shawna

__________________________________________________

[Guest guest]

Jackie, i cant find 504 plan, can you tell me what you know ? Id greatly

appreciate it Patty in calif. thank you

Re: (unknown)

Have you been to the OC Foundation site? They have a program to inform

teachers about OCD. I have also bought booklets about OCD from the Dean

Foundation in Wisconsin and handed them out to teachers and counselors. And

the others will probably tell you about IEP's and 504 plans to make

accomodations for your daughter. Look into the archives for the list and you

will find a lot of information that should help you with the schools.

Jackie

You may subscribe to the Parents of Adults with OCD List at

parentsofadultswithOCD-subscribe . You may subscribe to the

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You may subscribe to the OCD Kids Support Group at

OCDKidsSupportGroup-subscribe . You may change your

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. Our list advisors are Tamar

Chansky, Ph.D., Aureen Pinto Wagner, Ph.D., and Dan Geller, M.D. Our list

moderators are Birkhan, Kathy Hammes, Joye, Kathy Mac, Jule

Monnens, Gail Pesses, Kathy , Vivian Stembridge, and Jackie Stout.

Subscription issues or suggestions may be addressed to Louis Harkins, list

owner, at lharkins@... .

[Guest guest]

Patty,

I can't remember if someone already sent you this site, but check it

out for 504 info.

Marlys

http://www.wrightslaw.com/advoc/articles/504_IDEA_Rosenfeld.html

> Jackie, i cant find 504 plan, can you tell me what you know ? Id

greatly appreciate it Patty in calif. thank you

[Guest guest]

Hi Jackie, thank you so much, your great Patty in calif.

Re: (unknown)

Patty,

I can't remember if someone already sent you this site, but check it

out for 504 info.

Marlys

http://www.wrightslaw.com/advoc/articles/504_IDEA_Rosenfeld.html

> Jackie, i cant find 504 plan, can you tell me what you know ? Id

greatly appreciate it Patty in calif. thank you

[Guest guest]

Dave you got that right!!!!!! Look out ya never know when a warm spell is coming!!!

[Guest guest]

Hey I was one of those kids going to school in the dark!!! I remember..

[Guest guest]

I get up that early too but it's to do some warming..hahahaha..I get up later...

[Guest guest]

-

Excellent news about Tabitha!!

Diane (, 2, pauci)

[Guest guest]

Wow karen and Tab that is so wonderful !!! I'm sure the knee will folllow suit:):):)Thanks for sharing your great news..it made my day:):)Tree:):) (unknown) HELLO EVERYONE!!!!!!!!Hope all is good. I wanted to let everyone know how Tabithas dr. appt. wentyesterday...which was great! I don't know if anyone remembers the post I hadsent about them not getting me to get labs on Tab. Well when she got herdose of remicade..they took her blood and everything looks great! The dr.told me that her arthritis activity is low..so horray!The dr. and I decided to give the splint for her knee more time to work..ifit doesn't help by the beginning of next year..she will be put in and herknee will get manipulated. The only thing is that since her knee has lockedon her..there is the possibility that the cord that runs to her foot hastightened up(from her walking on the top of her foot)but we won't know thatuntil her knee gets straightened out and if it does then she will have tohave surgery done on that.Tabitha went in and talked to the doctor herself..answered his questionsabout everything..i was proud! She was excited..he is going to get thisplace to get in contact with her that will help her get a part-time job thatis suited for her.So all is well for now!good luck to yallkaren(tab 16..poly)_________________________________________________________________Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Hi Arlene,

Welcome ! Of course it was a good idea to subscribe :-) We're such a nice

bunch on here, with one or two exceptions anyway :-)

Hope you find the website and list useful and enjoy the " banter "

Best Wishes

Ian

Listowner

(unknown)

Hi everyone

My name is Arlene McDermott. I am currently employed as a Medic /

Occupational Health Nurse by AON. I do relief work anywhere I'm sent to but

mostly in the North Sea. I trained in May and since then I have worked on

Texaco Chevron and BP installations. I have a general nursing background and

have found it difficult occasionally coping with being isolated although I

am really enjoying the career change. This site was reccommended by a friend

and I thought that it would be a good idea to subscribe.

Regards

Arlene

---------------------------------

[Guest guest]

Sometimes parenting a child with special needs is hard, but it is always

worth it! =) What is your name? You said you had a disability too.

If you don't mind me asking, what is your disability? Are you new to the

list?

Take care,

Kym...mom to 4, including 4 year old with DS

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

you wrote:

it must be hard to be a mom of a downs kid a 3 year old kid was in a

store i was at today he kept being wild in the store people were

looking he was so cute i have a disbilty to and was going to make

conversaion with the kid and mom but she had her hands for with 2 kids

i wish i had a downs friend they seem so cute and friendly please

reply and tell me what u think

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

Sometimes parenting a child with special needs is hard, but it is always

worth it! =) What is your name? You said you had a disability too.

If you don't mind me asking, what is your disability? Are you new to the

list?

Take care,

Kym...mom to 4, including 4 year old with DS

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

you wrote:

it must be hard to be a mom of a downs kid a 3 year old kid was in a

store i was at today he kept being wild in the store people were

looking he was so cute i have a disbilty to and was going to make

conversaion with the kid and mom but she had her hands for with 2 kids

i wish i had a downs friend they seem so cute and friendly please

reply and tell me what u think

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/web/.

[Guest guest]

congradulations my daughter is also 14 and in 9th grade shes doing good

compared to a year and a half shes manages this pretty good as you know the

ups and downs you have accomplished doing what older ones have tried for

years

you have the will to get and do what you want

where do you live? we are in atlanta ga

Robbin

[Guest guest]

Secret messages written in invisible bytes???

[Guest guest]

LOL.. your one of those quick witted ones arent you?

Gretchen

> Secret messages written in invisible bytes???

[Guest guest]

Go SS Comets!! Hi & welcome. My son has JRA, he is 4 - and he doesn't let

it slow him down too much. It sounds like you are coping well & that you get

great advice from your Mom. Best wishes!

Val

Rob's Mom (4,systemic)

In a message dated Thu, 8 Nov 2001 5:47:15 PM Eastern Standard Time,

slimylizardbrain@... writes:

> My name is and I am 14. I have had JRA for two years. I found

> this list after my school nurse encouraged me to learn more about my

> arthritis. This list has helped me and my mom understands that there

> are other people out there who have JRA and can discuss it. Having

> arthritis has effected my life but I have learned that even though I

> am in pain I can still do the things I want to do. Practically my

> entire life I have lived and breathed volleyball but this year after

> making the freshmen team at my high school I had to quit one week

> into the season because I could not handle the pain it put on me. But

> of coarse I will never quit playing. I am now playing off season club

> (2 time champions! go SS Comets!) And when my team practices we work

> together as a team and there is not as much stress as playing school.

> I wanted to write this message to say that even though this holds me

> back sometimes if I work hard and don't complain and over work myself

> some day, like my mom says, I will grow out of it. And if it ever

> comes up again I know how to handle my arthritis.

>

> .

>

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

-

Sounds like you have a great attitude and are handling things very well. My

daughter is 2, and I hope she learns to be as brave and as accepting of this

bad hand of cards she was dealt as you are. Keep playing volleyball and

having all the fun a 14 year old girl is supposed to have:) Glad to hear

from you.

Diane (, 2, pauci)

[Guest guest]

Hi ,

Welcome! My daughter Abbie is 12 1/2 with systemic jra. I know there are

quite a few girls in your age range out here who would love to become email

buddies. I also know from a parents point of view how much it has helped

Abbie to be able to talk to someone else dealing with the same issues.

Christy

[Guest guest]

Hi,. Welcome! Volleyball is big in our house too. My older daughter

played (club and her HS), my youngest daughter plays (grammar school and

just starting club), I coach, and , who is also 14 with pauci

jra, played in school too. He was not feeling too good during the last

season but he stayed in there and played. He didn't feel comfortable trying

club just yet, but is really wanting to try out for his high school in Feb.

As you know, boys HS season starts in the spring. Well, just wanted to say

Hi and let you know that you're doing a great job. It is great that you

stick in there and keep playing! Good luck! Michele

(unknown)

My name is and I am 14. I have had JRA for two years. I found

this list after my school nurse encouraged me to learn more about my

arthritis. This list has helped me and my mom understands that there

are other people out there who have JRA and can discuss it. Having

arthritis has effected my life but I have learned that even though I

am in pain I can still do the things I want to do. Practically my

entire life I have lived and breathed volleyball but this year after

making the freshmen team at my high school I had to quit one week

into the season because I could not handle the pain it put on me. But

of coarse I will never quit playing. I am now playing off season club

(2 time champions! go SS Comets!) And when my team practices we work

together as a team and there is not as much stress as playing school.

I wanted to write this message to say that even though this holds me

back sometimes if I work hard and don't complain and over work myself

some day, like my mom says, I will grow out of it. And if it ever

comes up again I know how to handle my arthritis.

.

For links to websites about arthritis and JRA, visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

Hi ,

Thanks for your very inspiring message. We all have our ups and downs

but it seems like you have really learned how to focus on the positive.

With that kind of attitude, you'll be able to meet or exceed all of the

goals you set for yourself It made me happy to hear about the way you

adjusted your volleyball schedule. Less stress ... but you're still

having fun and are able to enjoy the competition. Best of luck, to you

and your teammates

Aloha,

Georgina

slimylizardbrain@... wrote:

>

> My name is and I am 14. I have had JRA for two years. I found

> this list after my school nurse encouraged me to learn more about my

> arthritis. This list has helped me and my mom understands that there

> are other people out there who have JRA and can discuss it. Having

> arthritis has effected my life but I have learned that even though I

> am in pain I can still do the things I want to do. Practically my

> entire life I have lived and breathed volleyball but this year after

> making the freshmen team at my high school I had to quit one week

> into the season because I could not handle the pain it put on me. But

> of coarse I will never quit playing. I am now playing off season club

> (2 time champions! go SS Comets!) And when my team practices we work

> together as a team and there is not as much stress as playing school.

> I wanted to write this message to say that even though this holds me

> back sometimes if I work hard and don't complain and over work myself

> some day, like my mom says, I will grow out of it. And if it ever

> comes up again I know how to handle my arthritis.

>

> .

[Guest guest]

im not sure where to start jamie, would be a loooonnng email if i wrote the many

things weve doneover the years to get nathanup to this pint which is pretty

great lately id have to say, knock on wood,lol. lets see, the compliance issue,

have worked on greatly over the years, we have found starting for very short

item of work then offer break, they may sign it, verbalize it or use a pic

symbol, i remember just starting with each peice of clothing, for eg: nathan

would finally put on a sock, and he would get the choice, play or more work,

showing him the signs while saying it, he would always choose play, so he would

get timed play, then when timer up, its time to work then play ok, then the

power struggle to get him to work just for one small item, it can even be one

answer on a page just start small and work up. But be consisitent, if are

refusing to work, uuugh i remember when first started these sessions, it took an

hour and a half just to get nathan to put a peg in the board, but he did catch

on to the " play " or " break " immedialtely. We would put a pge in the board then

it was nathan turn to work then play, he would toss it (ofcourse) so then we

would have to walk him over to peg manually pick it up hand over hand then walk

him back over to board hand over hand show him to put in in board then take ut

and hand to him stating nahtan needs to put peg in board, then you can play,

work then play. We had to even do a few sessions like this at home until he

started complying and working for that play/break time---we still use it greatly

even today with NO hassles from nathan at all, except he works for much longer

periods of time and will occasionally sign or request a break in the middle but

easily redirected to finish then break time and he does without complaint, then

at break time he eagerly gets his transition toys he carries out and plays until

the timer goes off(its just a few minutes anymore) then automatically puts his

toys away and works again until next break time, and he has a pic schedule he

can veiw at all times so this hleps him anticipate upcoming break times too.

Just remember consistency, and patience are the huge biggies in this area.

shawna.

(unknown)

Hi,

I have a few questions that I am hoping you will be able to help me out with.

My son, Jon is also on seroqual and is picking up the pounds. We are having a

hard time deciding what to do. He has been on it since Oct. 12 and I'm not sure

I really see much difference in his behavior either. He doesn't seem more

compliant since he's been on it...a bit calmer but not more focused. Not sure

what to do..the weight thing really has me concerned.

I remember someone writing about their son and puberty. Can anyone share

their experience with this. We think this may have something to do with Jon's

behavior problems as of late. What changes did you see?

What types of behavior plans have your schools used in regard to your kids?

Can anyone give specific examples for target behaviors that deal with compliance

issues, refusing to get up off the floor and go where they want his to go,

climbing on the desk, and running off?

Appreciate any info. you can provide,

--------------------------------------------------

Checkout our homepage for information, bookmarks, and photos of

our kids. Share favorite bookmarks, ideas, and other information by including

them. Don't forget, messages are a permanent record of the archives for our

list.

--------------------------------------------

[Guest guest]

In a message dated 11/9/01 3:52:07 PM US Eastern Standard Time,

naylorj@... writes:

<< I remember someone writing about their son and puberty. Can anyone share

their experience with this. We think this may have something to do with

Jon's behavior problems as of late. What changes did you see?

>>

Hi ,

Our son, Gene, started into puberty when he was about eleven. I think the

things we saw were in general more resistance to doing what was requested,

sensory issues seemed to escalate in terms of spinning, rocking and he just

plain started screaming his resistance more. No one in the school really

knew what to do...the social worker and principal and aide felt that he

" could use a good time out " , but that really was not helpful in helping stop

the behaviors of course. It wasn't getting at the cause, just punishing him.

Gene doesn't have alot of language so I always said...you know lots of kids

get snotty when they go through puberty....but how could Gene get snotty? He

didn't have the language and he could only communicate his displeasure

through his screaming and loud " NOs " . We brought in some folks from the

Autism Society of Michigan and then an inclusion specialist. We took Gene

for a thorough senory integration eval and built a sensory diet into his

day. About this time, he went into fifth grade and it didn't get a whole lot

better because his aide didn't understand his behavior or autism. She kept

getting into power struggles with him, saying she could be more stubborn than

him. We developed a lot of strategies to help with the tranistions...velco

word cards with the days activities in order. We had to put two or three

" nonpreferred activites " there and then followed it with a preferred activity

that he could look forward to. We needed this daily activity board to

constantly move with him, because when he could see what was expected he did

it much more readily. In addition, transitioning was a count down system

starting at five minutes. THis year we are using one of those timers that

has a red section that progressively gets smaller until time is out. I don't

know the name but works well. In addition, his curriculum needed to be

varied and the more he could participate with the other kids, share with the

other kids and be less isolated, the happier he was.

I think the thing with Gene and puberty was that he just became more strong

willed and wouldn't back down. We don't bribe him and we don't reward him

really. This year he knows he has choices and some say over things and he

does so much better. He has a new aide who is great...(.a stubborn one who

needs to show him whose boss was a recipe for disaster ). He started on

Zoloft in the summer and I have noted a big difference in his overall level

of happiness and school staff have, in general, seen great gains in how he is

interacting with people and his improved language.

I sure will be glad when puberty ends....does anyone know how long it takes

to be finished with puberty???

Lauri in MI, mom to Gene age 13

[Guest guest]

Well it depends on the age and the sex on when the kid

starts puperty.

=====

__________________________________________________

[Guest guest]

Sometimes I wonder if puberty even ends! :-)

Carol

She isn't Typical, She's Trisha!

[Guest guest]

CFRITCH@... wrote:

> My dan doctor gave us a bunch of " stuff " to give our son and I don't

> know if it is even compatible stuff. He just gave us a pile of things

> and said see ya. If anyone can help me I feel like I am not even sure

>

> if what I am doing is correct. Here is what we give our son (in his

> morning OJ - he can tolerate it):

>

> 10mg-potassium(phosphate)

> 75mcg potassium iodide

> 6.8 mg zinc(sulphate)

> Evening primrose oil(350mg linoleic acid, 60mg gamma-linolenic)

> Liquid calcium-magnesium (calcium citrate, lactate, carbonate=300mg)

> magnesium (hydroxide, carbonate=150mg) and that includes vitamin d-3.

>

> We also give a Pep and zyme- prime in the juice as well. Then 2 times

> a day well after enzymes he gets a strong pro-biotic. He gets the

> enzymes with every meal and is still gf/cf. The doctor also wanted us

> to give him fish oil/flax oil but that made him aggressive so we

> stopped. He also wanted to give him molybdenum, manganese, and

> selenium but we haven't started them yet. Does this concoction make

> any sense? You guys know so much more I feel very ignorant. We had

> extensive blood work done and it was a Fatty Acid test sent to Body

> Bio and a CBC and a red blood count analysis sent to Kennedy Krieger

> Institute.

>

> I am in the process of reading all of your FAQ's and really will

> pursue having his hair analyzed,. I was wondering if his first haircut

>

> baby hair would be best as it was right after his double shot of vacs

> HIB and HEP-B( on same day.).

>

ALRIGHT! youre reading the FAQ. Although that in itself raises more

questions with some.

About the hair from the first haircut,

only if you have enough of a sample. regardless the counting rules

should help otherwise

>

> Overall he is doing very well. He still obsesses but not nearly to the

>

> magnitude he used to, the enzymes really helped with that, and his

> defiance is up and down but also better.

> There are sooo many products for sooo many behaviors I am swimming in

> confusion and am desperately trying to keep it all in order in my

> head.

>

> I am currently on the enzyme board as he is on the Houston enzymes.

>

> Thanks for you support,

>

> Patti (mom of Elijah 3.2, no formal diagnosis/ Hannah 71/2 nt)

The first Dr we went too is a DAN doctor and quite frankly did a similar

thing of throwing a bunch of suggested supplements at us and explaining

little as to why they are needed. different ones are needed for

different reasons.

Educate yourself, like you are doing. Antioxidants are the ones most

kids need. Vitamins A, C & E. Essential fatty acids like fish oils of

flax seed, MAgnesium and zinc are also commonly needed. Just keep

reading the FAQ and info from older posts and you'll learn quite a bit.

Best Wishes

--

" When you don’t know where you’re going, you have

to stick together just in case someone gets there. "