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help im really fustrated dad told em im mentaly ill just course im obsessed

with one of my best friends i mean i knwo obsession is a charge thing but he

says im mentaly ill i dotn want to be dont feel i am he wants me to go to

hostial course of it i dont want to and im not mentaly ill or if i am i know

what it is ive been in hosptial with it heaps of times but no he just wants

me to go to hosptial what if i end up in there i wont ever come out coz i

knwo what they r like and i dotn think im sick ellen who is trying nto to be

obsessed but is

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Ellen, I may not understand most things you write, but you always seem

like a happy person. You dont come across as mentaly ill. I have tons

of issues and i dont think im even at the point of mentaly ill. I

think mentaly ill as scisophrenia or other exream mental dissorder. I

agree with you not wanting to end up staying in a hospital

perminantly. Could you talk to your mom about it? Maby your dad was

just in a bad mood or something. But really your not mentaly ill. At

least not by the definitions that i learned in abnormal phycology.

Hope that at leasts makes you feel a little better hun.

Well i gotta get ready for work.

Chantelle

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Ellen, was he being serious? youve told me about ur dads moods sometimes how

he just yells alot, i dont thikn he was bieng serious hun, i dont thikn ur

mentally ill, just silly like me ay :)

>

> Ellen, I may not understand most things you write, but you always seem

> like a happy person. You dont come across as mentaly ill. I have tons

> of issues and i dont think im even at the point of mentaly ill. I

> think mentaly ill as scisophrenia or other exream mental dissorder. I

> agree with you not wanting to end up staying in a hospital

> perminantly. Could you talk to your mom about it? Maby your dad was

> just in a bad mood or something. But really your not mentaly ill. At

> least not by the definitions that i learned in abnormal phycology.

>

> Hope that at leasts makes you feel a little better hun.

>

>

> Well i gotta get ready for work.

>

>

> Chantelle

>

>

>

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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Ellen,

That is a hard thing. When the obsessions get in the way of living your

life, or cause a danger to you or others, then it is time to get help for

them. That is when they become more than part of just the quirks that make

up a person's personality, but become mental illness. It does not mean you

are " crazy " like all the horrid movies show. It means the chemicals that

control the messages between your nerves are out of balance. That is a

medical problem that can be helped.

I am confused though - does he think you need to go see a doctor or get

admitted to a psych hospital?

Kim

> help im really fustrated dad told em im mentaly ill just course im obsessed

> with one of my best friends i mean i knwo obsession is a charge thing but he

> says im mentaly ill i dotn want to be dont feel i am he wants me to go to

> hostial course of it i dont want to and im not mentaly ill or if i am i know

> what it is ive been in hosptial with it heaps of times but no he just wants

> me to go to hosptial what if i end up in there i wont ever come out coz i

> knwo what they r like and i dotn think im sick ellen who is trying nto to be

> obsessed but is

>

>

>

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Ellen,

Oh I know I am going to be misunderstood on this one but I have to say

something here.

Mental illness isn't something to be embarrassed about. People makes it that

way but that's wrong. OCD is a mental disorder as well as many other things

many individuals with CHARGE have including anxiety and all the other junk.

Mental stability is the ability to act and react within societies standards and

boundaries. Once there is something like obsessing about people that is

outside of societies standards and it negatively interferes with a persons daily

living than it is a mental illness. That's OK. Learning about it and

developing coping strategies, as well as other ways to help, is what is needed.

Patty too had/has her obsessions about people. And yes it is a CHARGE thing.

That is what isn't understood. It is totally different from a " normal "

persons mental illness and obsessions. We even have had " specialists " reprimand

her for it or think she had limited mental intellectual abilities due to it.

That's just wrong. It is CHARGE but it does interfere with her life. And as a

parent I have to say it interferes with our lives. It is hard and has caused

great pain on all sides. I also think it will be like this for her entire

life. But that's just me talking. I would love to hear what the specialist

think.

Not only must you look at the behaviors but you must look at the reasons

causing the behaviors. Sometimes it is just CHARGE but then there are times

making it is worse due to illnesses, social loneliness, stress, medicine changes

and plain old lack of understanding.

So what to do about it? Give it a name. (Thanks Laurie Denno!)

Yes, Patty too can talk about it. Michele, that is one of the hardest parts

of it all. She knows! It can be embarrassing but Patty is stronger than

that.

But then Ellen don't be angry about it and try not to be angry at your

father. I have a feeling the situation started out easy but lead to

frustrations on

all sides. I have a feeling your father loves you more than the world.

Don't be angry with him. Let that part go. Don't be embarrassed about it. Let

that part go. Learn about it. Understand it. GIVE IT A NAME! Develop coping

strategies. We used to tell Patty she was " spinning " but we have now learned

that term is to open for her. We now say I see ... you're obsessing, you are

persevorating, you aren't mentally stable at the moment, you are not healthy

right now, that's not OK.... Sure those sound harsh but they are the truth.

It eases her really. We talked about using those words before they happened.

Now they calm her.

Give it a name.

And Ellen, there were a few times when I thought we would have to hospitalize

her. The worse was when we tried a new med, Strattera, which made her a

different person. But then again times were hard when she was without her

regular

meds. Also times are worse with things like her PMS (menstrual cycle). Then

there are the times that Patty just wants a friend just like everyone else.

And why shouldn't she. She's right and that's not obsessing. She just hasn't

had the social learning experiences or opportunities like everyone else.

See, it all isn't that easy.

Also now she doesn't use the phone or the Internet as much as she used to.

She has broken the cycle. That helps her. But if she goes back in the cycle

we break it for her because we love her to bits. That makes her mad at the

time but when she comes around she understands and thanks us for it. I have a

feeling your dad was doing the same.

Oh yea, now she also gives herself rules. Sure she breaks them, but all in

all she's so much better.

Plus she meditates and works out. She also now has her dog which has been

better than anything we have ever have done for her-EVER!

Don't think of mental illness as something horrible. Think of it as

something you can name and then deal with. And you won't get locked up in a

hospital

forever. Let that go. Think of it like a person having a runny nose. Sure

there are ways to take care of it but you must look at why the nose is running

in the first place. The same is with obsessions. Why is it there and what is

happening?

But to do that right-look at CHARGE first, last and always!

Ellen, I have to say you are a very stable person who can teach all of us

tons. I am sorry if I have said something that you feel uncomfortable with. I

don't mean to. I just don't want to see you, or Patty, struggle. I am so very

proud of you. Sure Patty has obsessions which is a mental illness but she is

one of the most mentally stable person I have ever met. She is quite gifted.

If I had to live her life I wouldn't be as strong as her. Bet you are the

same!

Take care and talk calmly to your parents. Bet they will be there for

you-forever!

Oh and last, you must remember parents aren't perfect. They are people too

who make mistakes, especially in the heat of the moment. Bet your dad loves

you more than life itself. Also, I bet he is more than proud of you than you

could ever imagine.

By the way, I just had Patty read this before I sent it out. She told me to

tell you she says hi.

Bonnie, mom to a 23, Patty CHARGE 21, and wife to

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Ellen-

Ouch -- I think my feelings would be terribly hurt if someone told me I was

mentally ill because of my depression/mood issues. It's hard to wrap my

head around some of these things. I don't think of OCD as mental illness in

the same way that I think of schizophrenia as a mental illness. In true

medical terms, they both are mental illness and you see a mental health

professional for help with them. But there's something different about it.

I'd like to know just how much this obsession interferes with your daily

life -- is that why your dad said something like that and thinks you need

hospitalization to help it?? Seems to me, if it was that great of an

obsession, you wouldn't be able to post to us about other things and

wouldn't be able to get on with anything else in your life.

I hope he was just speaking out of frustration and you just gave his comment

too much weight. What does your mom say?

Michele W

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Oh Ellen, I dont think you are. You have helped all of us and you

are a very friendly person. What do you do that makes your dad say

you are obsessed? I would talk to your mom and see what she says.

But I think you are fine and I wouldnt worry about it to much, you

are a great girl!!!

Hugs,

Crystal and Eva(9 month charger)

>

> help im really fustrated dad told em im mentaly ill just course im

obsessed

> with one of my best friends i mean i knwo obsession is a charge

thing but he

> says im mentaly ill i dotn want to be dont feel i am he wants me

to go to

> hostial course of it i dont want to and im not mentaly ill or if i

am i know

> what it is ive been in hosptial with it heaps of times but no he

just wants

> me to go to hosptial what if i end up in there i wont ever come

out coz i

> knwo what they r like and i dotn think im sick ellen who is trying

nto to be

> obsessed but is

>

>

>

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dearest ellen

your not obsessed, most definitely not mentally ill. your dad sounds

as if hes having a crisis or bad day.

I have OCD, in that I have a cleaning obsession, i can not sit and

relax unless the house is perfect, my cleaning drives everyone

crazy, i do manage to control it sometimes but most days i cant

relax, I feel on edge if some one in the house moves something where

it doesnt belong, and so I have to move it straight back, and i mean

if its moved a milimetre!!!!

so if anyones mental sweetie its me NOT YOU.!!

chill out dont worry, lol

love lesley xxxxxxx

> >

> > help im really fustrated dad told em im mentaly ill just course

im

> obsessed

> > with one of my best friends i mean i knwo obsession is a charge

> thing but he

> > says im mentaly ill i dotn want to be dont feel i am he wants me

> to go to

> > hostial course of it i dont want to and im not mentaly ill or if

i

> am i know

> > what it is ive been in hosptial with it heaps of times but no he

> just wants

> > me to go to hosptial what if i end up in there i wont ever come

> out coz i

> > knwo what they r like and i dotn think im sick ellen who is

trying

> nto to be

> > obsessed but is

> >

> >

> >

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Hey Lesley, you have a cleaning obsession??? :D You should come to my

place, maby you can help me organize! LOL!!!

well i hope all goes well with aimelie. :)

Chantelle

> I have OCD, in that I have a cleaning obsession, i can not sit and

> relax unless the house is perfect, my cleaning drives everyone

> crazy, i do manage to control it sometimes but most days i cant

> relax, I feel on edge if some one in the house moves something where

> it doesnt belong, and so I have to move it straight back, and i

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Chantelle

i would love to come clean for you!!, I can always find something to

clean even when I am done, I take a toothbrush to the tiniest of

corners!!! its really bad I know but I have been like this since a

child, my bedroom was always perfect,If amelie doesnt get OCD

through charge she will probably get it from me, oh well we have the

exact same PDA scar so she may as well follow mommy on the cleaning

rosta!!! I can just see us both when she is older polishing in sync

together!! how wonderful would that be.

but I wish I could say the same for these 3 smelly dirty girls i

have, three lots of dirty knickers and so on all over the floors

they drive me insane, and well Darren just leaves me to strop, he

knows i need to be left alone to get on with it, its a kind of

therapy, i feel good afterwards.

lol

lesley xxxx

>

> > I have OCD, in that I have a cleaning obsession, i can not sit

and

> > relax unless the house is perfect, my cleaning drives everyone

> > crazy, i do manage to control it sometimes but most days i cant

> > relax, I feel on edge if some one in the house moves something

where

> > it doesnt belong, and so I have to move it straight back, and i

>

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Lesley-

I'm giggling at your cleaning issues. I'm more like Chantelle-- just can't

find time and energy for cleaning. In a way, it's good that my husband is

similar because he doesn't complain. But it's bad because we're both

packrats. It's crazy. I wonder sometimes if I'd like your clean kind of

crazy better.

Michele W

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Ellen,

I am only now getting to mail and sorry for the delay in response. I don't

have anything to add that is different from others, but wanted to lend my

support to you.

I would agree with everyone that you are not mentally ill--your OCD is part of

your CHARGE syndrome and not a product of mental illness. It does not interfere

with your life--you are very productive and have many interests and friends and

activities. People with OCD that ARE mentally ill are totally consumed by their

thoughts, actions and obsessions. This does not appear to be you. I am sorry

that you are feeling so hurt by this--I hope that you and your dad can work this

out. As someone said, perhaps your dad was having his own very bad day and he

had no other way to cope than to focus on your OCD.

take good care and hopefully some of this has been resolved already.

pam

Chantelle--you bring up a good point about putting cleaning OCD to good use--I

agree with you!! People with cleaning OCD should help those who don't have that

particular skill!!!

Michele, if you are reading this before you go--your workshop is tomorrow ,

right?---I have not forgotten you and am working on a response. It is

complicated!!! If your workshop is tomorrow (or this week) good luck, but you

won't need it--you will be great!!

pam

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Pam-

I don't have anything going on related to Aubrie yet, so take your time in

responding. I have flagged all the posts so far and talked with our local

neuropsych. She is due to get her licensing this spring but can't do the

evals we need before that. She gave me the Columbia MO Autism Clinic as a

lead. She is adamant that we need a neuropsychologist. What are your

thoughts? There is a specialist that was on the autism task force in IL.

He is about 3 hours away from us. I'm sure of his specialty because I

haven't researched him yet. But he is apparently dedicated to understanding

autism and advocating on behalf of families and children. If he can open

his autism box wide enough to encompass our issues, he may be a good lead in

IL. I have yet to call Dr Davenport either. So I've got lots of directions

to pursue as far as finding the person to help us.

How do I get the school to pay for an eval and ongoing support? It's

obviously an educational issue since school is what has brought it up. They

don't have the expertise we need - but they may try to say they do. If you

(or anyone else) has tips on that, I'd appreciate it. I have a few

advocates I will call here for advise. I know IDEA and section 504 would

support them paying -- but getting them to do it is another story.

Michele W

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your right im not its just soemtimes i think that well if you look at ti

this way mum does all my stuff so she probly does knwop the charge factors

of all thsi stuff but dad doesnt reall hmm well i know that he has

depression himslef so then i guess he does worry bout me to much oh well at

least im not sick mum says im not and my friends say im not but they do wish

i didnt have to talk to them all the time you know bonnie patty is so much

like me in many way with her friends its kinda wierd but then we are bout

the same age so then i guess wouldnt be surpising oh well at least i can

write on here as michelle said and vent when i need to many dotn LOL hugs

ellen

>

> Pam-

> I don't have anything going on related to Aubrie yet, so take your time in

> responding. I have flagged all the posts so far and talked with our local

> neuropsych. She is due to get her licensing this spring but can't do the

> evals we need before that. She gave me the Columbia MO Autism Clinic as a

> lead. She is adamant that we need a neuropsychologist. What are your

> thoughts? There is a specialist that was on the autism task force in IL.

> He is about 3 hours away from us. I'm sure of his specialty because I

> haven't researched him yet. But he is apparently dedicated to

> understanding

> autism and advocating on behalf of families and children. If he can open

> his autism box wide enough to encompass our issues, he may be a good lead

> in

> IL. I have yet to call Dr Davenport either. So I've got lots of

> directions

> to pursue as far as finding the person to help us.

>

> How do I get the school to pay for an eval and ongoing support? It's

> obviously an educational issue since school is what has brought it

> up. They

> don't have the expertise we need - but they may try to say they do. If

> you

> (or anyone else) has tips on that, I'd appreciate it. I have a few

> advocates I will call here for advise. I know IDEA and section 504 would

> support them paying -- but getting them to do it is another story.

>

> Michele W

>

>

>

> Membership of this email support groups does not constitute membership in

> the CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter),

> please contact marion@... or visit

> the web site at http://www.chargesyndrome.org - for CHARGE Syndrome Canada

> information and membership, please visit http://www.chargesyndrome.ca or

> email info@... .

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

> www.chargesyndrome.org or by calling 1-.

>

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