Introduction

March 14, 2005

Hi Jim! Welcome & congratulations!!!! I am here in GA, feel free to contact me off group at m_bernstein@... 678-878-6698 I know someone in Woodstock that would be a world of info for you as far as schools go. Also, I am a real estate agent, and donate 5% of my commission to any non-profit Autism group of your choice, I'd love to help you!

Bernstein

Volunteer?> > > > Hi all..> > AutismLink is about to go national and we could use some volunteers to> add stuff to the database from Georgia. Is anyone interested?> > Basically you'd just be adding therapy providers, schools, support> groups, that type of thing. It's very easy work -- just typing it in.> > If anyone can give me a few hours of their time, please let me know. > It's very helpful to newly dx'd parents. We're ready to start> immediately.> > cindy Waeltermann> AutismLink> > > > >

March 14, 2005

Hi ,

Here's 's email:

Abukhraybeh@...

Here's 's phone number 901-324-0417.

My phone number is 770-517-5031.

email: bigflatdog@...

Thanks so much!

Jim Bernstein <m_bernstein@...> wrote:

Hi Jim! Welcome & congratulations!!!! I am here in GA, feel free to contact me off group at m_bernstein@... 678-878-6698 I know someone in Woodstock that would be a world of info for you as far as schools go. Also, I am a real estate agent, and donate 5% of my commission to any non-profit Autism group of your choice, I'd love to help you!

Bernstein

Volunteer?> > > > Hi all..> > AutismLink is about to go national and we could use some volunteers to> add stuff to the database from Georgia. Is anyone interested?> > Basically you'd just be adding therapy providers, schools, support> groups, that type of thing. It's very easy work -- just typing it in.> > If anyone can give me a few hours of their time, please let me know. > It's very helpful to newly dx'd parents. We're ready to start> immediately.> > cindy

Waeltermann> AutismLink> > > > >

May 10, 2006

In a message dated 5/9/2006 10:26:29 P.M. Eastern Standard Time,

@... writes:

You might want to call the middle school/junior high before classes

end this year (or maybe your school can set up a meeting for all to

meet together with jr high guidance counselor), and mention your son

will be going there, has an IEP, etc. See what they say.

Jane -

made an excellent suggestion here - also meeting with the teachers (or

trying to) prior to school starting - great ideas!

I might also suggest doing the footwork to get printed information

specifically written for teachers/administrators about OCD & giving it to the

school

yourself. I think I remember seeing something either in the file section of

this board, or maybe it was from the OCFoundation itself. Either way, I would

be sure to get something to them and suggest they read up on it in

preparation. A learning plan for the teachers is going to be key, however they

also

need to know exactly what they're dealing with, not just how to deal with it.

My daughter, 15 yrs, was just diagnosed this past January - so we're fairly

new to all this & still learning ourselves. Thankfully it hasn't crossed

over into a problem at school as yet. She has issues with contamination (her

passing germs to others), checking & rechecking, we've also been seeing some of

the apologizing going on.

We were also dead-set against meds in the beginning. About 2-3 weeks after

being diagnosed, she fell into such a horrible OCD death-spiral we couldn't

believe how fast she went downhill with it. Our next appt we said " ok, let's

do it.... where do we get medication? " Our daughter was put on Prozac &

within 3-4 weeks we started noticing subtle differences for the better - within

2

months, her entire life changed. She was happy again. She had time for

herself again - not just school work from the minute she got home to the minute

she went to bed at 10:30 or 11pm. No more tears over no free time & not

seeing her friends. No more stressed out daughter over grades. We wanted to

drop to our knees & thank God above for giving our daughter her life back.

Funny thing, none of the initial things that improved were any of the

rituals (or so we thought) of OCD. Turns out what we learned was that our

daughter

had been suffering from OCD for YEARS and we never knew. If affected her

ability to do her school work since she was in grade school. Up until October

& December of 2005 - when the OCD symptoms really hit hard due to 2 deaths in

our family, we had no idea what she was going through was due to OCD.

She's now on 50mg of Prozac (slowly increased by 10mg each visit). It has

made a huge difference in her life. We're still awaiting CBT therapy. She

has her 2nd appt with the therapist (still a " getting to know you " sort of

introduction appt) and the actual CBT won't start until June. It's killing me

to

wait that long. I feel like jumping up & down on the woman's sofa in her

office, screaming " BUT WHAT ABOUT NOW???? WHY CAN'T WE START THERAPY NOW???? "

hahaha.... but then, I would probably be the one put on Prozac after that!

HA!

I have high hopes that after CBT starts up & my daughter is taught the

technique to help herself through these episodes, we can slowly start decreasing

the meds. I hope one day she won't be on them.

What I've learned from the doctors I've spoken with & things I've read is

that, with some folks it's nearly impossible to learn anything without the

calming effects of the medication. OCD makes it impossible to concentrate &

learn anything they're being taught in therapy. Almost like having a kid with

ADD or ADHD, or something similar, try & sit through a long lesson in class and

actually learn something while listening -- then not understanding WHY they

can't sit still and learn. It's because their disorder won't allow it. Not

because they don't want to - but they are not able to due to the disorder.

Put them on meds to calm them down, then their brain is able to focus,

concentrate & learn. Sometimes you need one for the other to work. Remember,

nothing is forever. Just because you go on meds doesn't mean you're on them

forever.

You'll find folks with all sorts of opinions on this board - different ideas

on what worked - or didn't work - for them. You are the best judge of what

works for your child. I try & always have an open mind to other things & I

also try to never feel like I can't change my mind just because " I've decided "

already.

Good Luck!

LT

May 10, 2006

In a message dated 5/10/2006 9:18:04 AM Eastern Standard Time,

rnmomo2@... writes:

Hi Bonnie,

Thank so much for responding!

Don't be too quick to banish the idea of medication. It

may make a lot of positive difference in your son's life. Of course,

you can try therapy first.

Thank you, we may come to that point but we are not there yet.

I am also in NJ, not sure which hospital

you were advised to go to. If you don't want to travel so far, look

up the NJ Psychiatric Association on the web. You can look up

providers there that may be closer.

Our insurance is based in DE because that is where my husband works. So we

were encouraged to take him to the Dupont children's psychiatric department

there. We haven't ruled that out but I would very much like to see if we can

find a place more accessible for us on a regular basis for him.

I will definitely look into the NJ Psychiatric Association. I really

appreciate your help and support. Thanks.

Jane

Dear God: I have a problem. It's me.

May 10, 2006

In a message dated 5/10/2006 9:28:05 AM Eastern Standard Time,

lynnovale@... writes:

I enrolled

him at summer school at the new school so he had a

chance to learn the school grounds and feel

comfortable there. Also more sociallizing?

Thank you, I will see about that. See what they have to offer for him in the

summer.

Jane

May 10, 2006

In a message dated 5/10/2006 10:04:23 AM Eastern Standard Time, jtlt@...

writes:

I might also suggest doing the footwork to get printed information

specifically written for teachers/administrators about OCD & giving it to

the school

yourself.

Hi LT,

Thank you so much for your response to my post. This is a great idea! I

will definitely do this and have a few copies made.

We were also dead-set against meds in the beginning. About 2-3 weeks after

being diagnosed, she fell into such a horrible OCD death-spiral we couldn't

believe how fast she went downhill with it. Our next appt we said " ok,

let's

do it.... where do we get medication? "

Thank you for sharing your experience with me. If CJ ever got to the point

he was on such a downward spiral Im sure I would make the same decision. I'm

not ruling out meds completely but at this point and up to this point I do not

believe it has been needed. It may have helped some but meds also come with

risks too. If it came the the point that meds benefits outweighed the risks

for my particular son then things would definitely change. Im not dead set

against meds. I just wish to explore all possible avenues before turning to

that

route if neccessary.

Jane

May 10, 2006

In a message dated 5/10/2006 1:39:20 P.M. Eastern Standard Time,

JanieBeesPhoto@... writes:

Im not dead set

against meds. I just wish to explore all possible avenues before turning to

that

route if neccessary.

Jane -

Have you read the book, " Brain Lock " by Schwartz? I don't recall

reading in a previous post of yours that you did (sorry if I missed something

or forgot already....). This seems to be a great self-help book for OCD. I

just picked it up the other day & have read a bit of it. One thing I like is

that it's easy to understand - not a lot of psychological mumbo-jumbo :-)

Anyway, I've seen it mentioned on the board before & a new mom recently

wrote about how much it helped her son, so I thought I better pick it up while

we're waiting for therapy to start so we can do something in the meantime.

It's based on a 4-step program that you can work on at home without help from a

therapist. It sounds interesting so far. Just thought I'd mention it to you.

LT

May 10, 2006

Hi again Jane, you're welcome. If you have an IEP (covered under

IDEA), then you don't need a 504 Plan.

Students with a disability who don't qualify for an IEP can often

qualify for a 504 Plan. And, actually, the protection offered by

Section 504 of the Rehabilitation Act is part of the IEP. Just FYI,

here's a great link for this and mentions the differences between

the two (IDEA and a 504):

http://www.ed.gov/about/offices/list/ocr/504faq.html

I agree with you about adding to the IEP that you can write for him

when needed.

Keep us updated on how you and he are doing and how the meeting goes!

> Hi

> Thank you so much for your response. This is the kind of help

I am

> looking for. I will ask about a 504 in the meeting on monday with

the school. CJ's

> teachers in the last two years allowed me to do some writing for

CJ without

> any problem. It is not in his IEP though and I think we need to

adjust it.

> I'm not familiar with 504's and will looking into that. A few

people have

>

May 11, 2006

Jane,

We had tremendous success with " Brain Lock " . I'm attaching a message I wrote

to a new mom a couple of weeks ago.

Good luck,

Amy

From: " Amy Soussan "

<amysoussan@...> Add to Address Book Add Mobile Alert

DomainKeys has confirmed that this message was sent by .

Learn more Date: Thu, 4 May 2006 04:21:35 -0700 (PDT) Subject: Re:

New member and introduction...

Dear ,

I just read your post. This is the first time I have written a letter on this

site, although I joined a few months ago and read the posts regularly.

My daughter, Rosie (10) has OCD... my sister and I both have it. It's

important to understand that although a sufferer may (and should) be

symptom-free, OCD does not go away... it is always there. So even if Ivy had a

bad patch last year which completely disappeared, it doesn't mean that the OCD

is gone; it's just sort of in remission.

You have to get the book " Brain Lock " . I just looked around for it and can't

find it to tell you the author, but that's the title. It outlines a 4-step

program which you and your husband can do yourselves. It is very good, and has

helped Rosie enormously. My husband and I are anti-meds for children, although

we absolutely understand that in some cases medication is the only answer, at

least initially.

Rosie has not been to a psychiatrist/psychologist. It sounds terrible to say

it, but we simply don't have the time. (To all critics reading this post - do

NOT send me any replies freaking out about this statement.) Sometimes I feel

like a terrible parent when I read how dedicated some of these parents are...

especially things like people taking their kids to seminars! I am a medical

student and my husband is military, and most of the time I am so tired I fall

asleep before my head hits the pillow. We hardly have time to do the wash, let

alone anything else.

We do a good deal of reading about OCD, and have spoken openly about it to

Rosie, outlining the importance of resisting compulsive behaviors... example -

she KNOWS that she has shut the closet door but can't sit still for worrying

about checking on it, so she must resist the urge to check it. We set time

limits (the book talks about this) - if you really feel like you must check it,

wait 15 minutes.

Also, I had to smile -bitterly, of course- about the school fire department

visit. Last week was Holocaust Memorial Day and the teacher (without consulting

the parents) decided to show the children a film about concentration camps,

complete with gory pictures and ugly details. We're Jewish, but we believe in

discussing the Holocaust in an age-appropriate way... and Rosie, with her

issues, should never have been allowed to see this film.

ANYWAY... my husband and I both feel that following the four steps outlined

in the book has helped Rosie tremendously. The panic attacks have disappeared

over the last two months or so. The ruminations of a person with OCD seem

bizarre to a normal individual... but to a person with OCD they make perfect

sense. You should resist answering obsessive questions... you could say: " I've

just answered that question " or " We've just talked about that, let's talk about

something else " . I would also suggest avoiding films, books, or pictures that

might get an obsession started.

Nights were so awful three months ago I felt like I was getting no sleep at

all. As far as getting up super early (Rosie did that too), we let Rosie sleep

in our bed sometimes, and on nights she didn't, told her that if she woke up

early she should come into our bed and lie with us. Rosie has the symmetry thing

too... counting syllables, saying the " right " number of syllables or words,

tapping the right number of times. She knows that she has to resist this, and

that she should force herself to write an odd number of words and just leave

it... at least for the 15 minutes. If 15 minutes is too long for Ivy, she should

try 10.

Also, we sat with Rosie and made a list of all her compulsive behaviors

associated with bedtime... there were about 10 headings on her list. We told her

that we were going to systematically remove these one by one... she could choose

which would go first. Of course she picked easy ones, like putting a sock under

her pillow (!), but it didn't matter, because the ones that were harder to give

up got easier as time passed. Over a six-week period, she got rid of them all.

She shares a room with her 12-year old sister, so there is some degree of

monitoring going on.

Although we have not spoken to the school, we have told family members about

Rosie's condition, including her three older siblings. The family are the best

therapists for someone with OCD. OCD is a terrible disease for the sufferer

because it is so often invalidated by others, perhaps because people feel so

much discomfort about psychological illnesses... my own family members (parents,

siblings) have told me that Rosie is actually fine - it's all just a bid for

attention. For awhile Rosie was secretive about her behaviors (like your sister;

typically OCD sufferers feel shame about the things they do and want to hide

them from others).

It is a very hard thing to control the direction of your thoughts, and

sometimes the exercises don't work at first. With time and practice, they get

easier. When I think of the difference between now and three months ago, it's

like day and night for Rosie. One of the most helpful concepts was that her " bad

thoughts " are the result of a medical condition - a person should not feel

guilty for having obsessive thoughts any more than she should feel guilty for

having a broken leg or pneumonia. Please buy the book and read it... your child

is hurting, and it will be very hard to wait until your appointment without

doing anything.

Another thing you could do would be to get a yoga or meditation video and do

it with Ivy... Rosie's older siblings did yoga with her and if it didn't help,

it certainly didn't hurt - and took her mind off obsessive thoughts at least

while she was doing it!

I know that Ivy must feel awful. There isn't anywhere to go to escape

intrusive thoughts. It is so terrible to see your child suffer. The fact that

you know what she has and have a plan to combat it is a huge step. You have my

heartfelt best wishes for you and your daughter.

Amy

jtlt@... wrote: