Us

[Guest guest]

Hi a:

Thanks for the interesting post about and . I am the mom

of two sons too. The younger one, Steve, is also 12 and he has OCD and

MDD. We used to think he has PTSD but Dr. Foa told me this didn't seem

right, based on my description.

You describe quite a few " just-so " obsessions which are pretty common with

OCD, especially in children. Many of us were just as you describe, not

aware that behaviors were OCD symptoms at first. For us it was only when

things began to interfere with family relations and school that we finally

realized something serious was upon us. We thought it was just a phase and

our friends we went to for advice reassured us this was so.

Does get any cognitive behavior therapy to help him cope with his

OCD? Steve has made some incredible progress thanks to his exposure and

response prevention tasks although it took a lot of time and effort until

he was really able to do the hard work of confronting his fears.

Steve's psychologist works mostly with autistic kids and he specializes in

Aspergers. He was the only person I could find in our state who was

experienced with OCD and other comorbidities. There might be others but an

avid search did not turn them up.

As far as computer software suggestions, I can just say that Steve loves

doing stuff on the computer, games, art, Internet surfing, you name it. He

likes the Sim games a lot. Also seems to like strategy games. It is hard

for me to keep up with all the different games he plays. This morning it

was Stratego, he even helped me to play it. That is part of what we work

on to help him with his social skills, it is floor time and he gets to

teach me how to play computer. Sometimes I worry that he is on the

computer too much so we do ration it.

Take care, aloha,Kathy (Ha)

kathyh@...

At 04:02 PM 7/25/99 -0400, you wrote:

>From: a <bobanglr@...>

>

>Hello everyone..

>Im the new one that just introduced myself yesterday. My name is a

and I live

>in florida. I joined three OCD lists at the same time so Im hoping I can

keep them

>straight )

>I would like to tell you a bit about . is almost 12, and

just

>these past two years I would say, I have started to see his little rituals

and

>compulsions.

>I didnt pay much heed to things like that before because if they were

there, it was

>very mild and still is mostly. But since my littlest, 3 years

old, has

>been dx'd with PDD-NOS (mild autism) I have been more aware of these things.

> himself will even tell me from time to time when he is frustrated

about

>something.... " mom.. Im kind of like .. I have to have things a

certain

>way "

>

>He doesnt count, that im aware of, or anything overly ocd but it is there

just the

>same. He *has* to have things a certain way or it will really make him

frustrated

>and upset. Drinking glass has to be three fourths full or he will not

drink out of

>it. If I make him stop pouring, he will just transfer it to a smaller cup

so that

>the level is " right " .

>He doesnt have a thing with germs.. but he does have certain things that

become

> " tainted " though he doesnt use that word..its just what I call it.

>He says.. it has " schoolwork " on it. He has a LD and reads at barely a

2nd grade

>level, had a horrible school experience and so dispises anything to do with

>school. He really freaked out one day a long time ago when we ran out of

pencils

>and so I told him to get his new pencil. This was a cute pencil he got for

>christmas or something and he didnt want to use it for schoolwork or that

would

>ruin it. Same with his folders. He has to seperate everything from " school "

>Well, now he is homeschooled.. for the past year. And it really hurt him for

>sometime the thought that now school was home--- it made home less happy

for him,

>less desirable and safe feeling. I never realied what that all meant at

the time

>as it was one of the first ocd symptoms I had seen and didnt recognize it

for what

>it was at the time.

>What I am trying to do to make school less like school was is to do things

>differently than he's used to. We read lots of literature, I read to him

mostly..

>and he enjoys this.

>We are working our way through the Narnia Chronicles.

>He really really hates to write anything, and so I woudl think using the

computer

>would help, but he never wants to do anything constructive on the PC.

>Any software suggestions?

>Anyhow, that's about where we are.. thanks for listening

>a

[Guest guest]

a - Contact the Learning Company for all sorts of high motivational

educational computer software. They have a wide variety available and are

always offering great sales. They also indicate all of their top selling

and award winning programs. I'm sure they have an 800 number.

us

>From: a <bobanglr@...>

>

>Hello everyone..

>Im the new one that just introduced myself yesterday. My name is a and

I live

>in florida. I joined three OCD lists at the same time so Im hoping I can

keep them

>straight )

>I would like to tell you a bit about . is almost 12, and

just

>these past two years I would say, I have started to see his little rituals

and

>compulsions.

>I didnt pay much heed to things like that before because if they were

there, it was

>very mild and still is mostly. But since my littlest, 3 years

old, has

>been dx'd with PDD-NOS (mild autism) I have been more aware of these

things.

> himself will even tell me from time to time when he is frustrated

about

>something.... " mom.. Im kind of like .. I have to have things a

certain

>way "

>

>He doesnt count, that im aware of, or anything overly ocd but it is there

just the

>same. He *has* to have things a certain way or it will really make him

frustrated

>and upset. Drinking glass has to be three fourths full or he will not

drink out of

>it. If I make him stop pouring, he will just transfer it to a smaller cup

so that

>the level is " right " .

>He doesnt have a thing with germs.. but he does have certain things that

become

> " tainted " though he doesnt use that word..its just what I call it.

>He says.. it has " schoolwork " on it. He has a LD and reads at barely a 2nd

grade

>level, had a horrible school experience and so dispises anything to do with

>school. He really freaked out one day a long time ago when we ran out of

pencils

>and so I told him to get his new pencil. This was a cute pencil he got for

>christmas or something and he didnt want to use it for schoolwork or that

would

>ruin it. Same with his folders. He has to seperate everything from

" school "

>Well, now he is homeschooled.. for the past year. And it really hurt him

for

>sometime the thought that now school was home--- it made home less happy

for him,

>less desirable and safe feeling. I never realied what that all meant at

the time

>as it was one of the first ocd symptoms I had seen and didnt recognize it

for what

>it was at the time.

>What I am trying to do to make school less like school was is to do things

>differently than he's used to. We read lots of literature, I read to him

mostly..

>and he enjoys this.

>We are working our way through the Narnia Chronicles.

>He really really hates to write anything, and so I woudl think using the

computer

>would help, but he never wants to do anything constructive on the PC.

>Any software suggestions?

>Anyhow, that's about where we are.. thanks for listening

>a

>

>

>

>---------------------------

[Guest guest]

HI a,Welcome You are in good hands here,this is the most wonderful group

of people .And the wisdom they have has come from allot of hard work, and

love for their children.My name is Beth I'm a grandmother of a 6 year old

with OCD.Give and a hug for me .Thank you for sharing with

us. Beth in IN.

us

> From: a <bobanglr@...>

>

> Hello everyone..

> Im the new one that just introduced myself yesterday. My name is a

and I live

> in florida. I joined three OCD lists at the same time so Im hoping I can

keep them

> straight )

> I would like to tell you a bit about . is almost 12, and

just

> these past two years I would say, I have started to see his little rituals

and

> compulsions.

> I didnt pay much heed to things like that before because if they were

there, it was

> very mild and still is mostly. But since my littlest, 3 years

old, has

> been dx'd with PDD-NOS (mild autism) I have been more aware of these

things.

> himself will even tell me from time to time when he is frustrated

about

> something.... " mom.. Im kind of like .. I have to have things a

certain

> way "

>

> He doesnt count, that im aware of, or anything overly ocd but it is there

just the

> same. He *has* to have things a certain way or it will really make him

frustrated

> and upset. Drinking glass has to be three fourths full or he will not

drink out of

> it. If I make him stop pouring, he will just transfer it to a smaller cup

so that

> the level is " right " .

> He doesnt have a thing with germs.. but he does have certain things that

become

> " tainted " though he doesnt use that word..its just what I call it.

> He says.. it has " schoolwork " on it. He has a LD and reads at barely a

2nd grade

> level, had a horrible school experience and so dispises anything to do

with

> school. He really freaked out one day a long time ago when we ran out of

pencils

> and so I told him to get his new pencil. This was a cute pencil he got

for

> christmas or something and he didnt want to use it for schoolwork or that

would

> ruin it. Same with his folders. He has to seperate everything from

" school "

> Well, now he is homeschooled.. for the past year. And it really hurt him

for

> sometime the thought that now school was home--- it made home less happy

for him,

> less desirable and safe feeling. I never realied what that all meant at

the time

> as it was one of the first ocd symptoms I had seen and didnt recognize it

for what

> it was at the time.

> What I am trying to do to make school less like school was is to do

things

> differently than he's used to. We read lots of literature, I read to him

mostly..

> and he enjoys this.

> We are working our way through the Narnia Chronicles.

> He really really hates to write anything, and so I woudl think using the

computer

> would help, but he never wants to do anything constructive on the PC.

> Any software suggestions?

> Anyhow, that's about where we are.. thanks for listening

> a

>

>

>

> ---------------------------

[Guest guest]

> Steve's psychologist works mostly with autistic kids and he specializes in

> Aspergers.

Wow, that is a rareity! It is hard to find a doctor even familiar with label ,

much less someone who specializes in it. Good going finding that one. I wish I

could find someone around here. I did find a dev ped in tampa, which is only 35

mile away and she used to be the president of some autism center in CA.. so I

was

lucky to find someone very familiar with that. However, the more I get to know

her, the less impressed I am. But.. she'll do for now.

thanks for sharing that info

a in Florida

[Guest guest]

Hi a:

One of the constantly repeated lessons I have had to learn finally as a

mental health service consumer for Steve is to be very fussy about who I

let work with him. At first I was very desperate as we live in a small,

rural, isolated area and even to find a warm body practising in the mental

health field has required a 500 mile round trip flight. We went through

four psychiatrists in the first ten months of finding help for him, and the

first three went off his case themselves. Luckily we still have the fourth

one but just for med management.

When you find someone suitable it will make so much difference, at least it

certainly has for Steve. I have learned to be much more savvy and not to

be too desperate for help and to work hard on being more patient (very hard

for me). A lot of the best help lies within us, we just need the guidance

from a knowledgeable and experienced professional, at least that is what I

believe now.

The very best resource for access to professionals for us has been other

mothers with kids with NBDs - I never even got my calls returned from the

OCF-listed support group in my state. Dr. Bruce Hyman is a very

knowledgeable OCD doc in your state and he has a web site too. He is about

to publish a book on OCD co-authored by Cherry Pedrick who is on the OCD-L.

He might be able to refer you to someone nearby who is skilled and

knowledgeable.

Good luck, take care, aloha, Kathy (Ha)

kathyh@...

At 09:19 PM 7/25/99 -0400, you wrote:

>From: a <bobanglr@...>

>

>> Steve's psychologist works mostly with autistic kids and he specializes in

>> Aspergers.

>

>Wow, that is a rareity! It is hard to find a doctor even familiar with

label ,

>much less someone who specializes in it. Good going finding that one. I

wish I

>could find someone around here. I did find a dev ped in tampa, which is

only 35

>mile away and she used to be the president of some autism center in CA..

so I was

>lucky to find someone very familiar with that. However, the more I get to

know

>her, the less impressed I am. But.. she'll do for now.

>

>thanks for sharing that info

>a in Florida

>

>

>

>---------------------------

[Guest guest]

Everyone,

Thanks for the nice welcome! Im sure this list will be help and support we

need.

a

Kathy Hammes wrote:

> From: Kathy Hammes <kathyh@...>

>

> Hi a:

>

> One of the constantly repeated lessons I have had to learn finally as a

> mental health service consumer for Steve is to be very fussy about who I

> let work with him. At first I was very desperate as we live in a small,

> rural, isolated area and even to find a warm body practising in the mental

> health field has required a 500 mile round trip flight. We went through

> four psychiatrists in the first ten months of finding help for him, and the

> first three went off his case themselves. Luckily we still have the fourth

> one but just for med management.

>

> When you find someone suitable it will make so much difference, at least it

> certainly has for Steve. I have learned to be much more savvy and not to

> be too desperate for help and to work hard on being more patient (very hard

> for me). A lot of the best help lies within us, we just need the guidance

> from a knowledgeable and experienced professional, at least that is what I

> believe now.

>

> The very best resource for access to professionals for us has been other

> mothers with kids with NBDs - I never even got my calls returned from the

> OCF-listed support group in my state. Dr. Bruce Hyman is a very

> knowledgeable OCD doc in your state and he has a web site too. He is about

> to publish a book on OCD co-authored by Cherry Pedrick who is on the OCD-L.

> He might be able to refer you to someone nearby who is skilled and

> knowledgeable.

>

> Good luck, take care, aloha, Kathy (Ha)

> kathyh@...

>

> At 09:19 PM 7/25/99 -0400, you wrote:

> >From: a <bobanglr@...>

> >

> >> Steve's psychologist works mostly with autistic kids and he specializes in

> >> Aspergers.

> >

> >Wow, that is a rareity! It is hard to find a doctor even familiar with

> label ,

> >much less someone who specializes in it. Good going finding that one. I

> wish I

> >could find someone around here. I did find a dev ped in tampa, which is

> only 35

> >mile away and she used to be the president of some autism center in CA..

> so I was

> >lucky to find someone very familiar with that. However, the more I get to

> know

> >her, the less impressed I am. But.. she'll do for now.

> >

> >thanks for sharing that info

> >a in Florida

> >

> >

> >

> >---------------------------

[Guest guest]

I have found that it is good for me to stay in poverty so I can get the services

that my children need. Of course I can not afford to eat sometimes, but isn't

it nice to know that some taxes are going to families that need it.

Of course to get services, you have to find out about them. You have to scratch

and claw your way to the top of lists that are never ending.

I have people in America that are jealous of me because I have an SSI income and

do not have to go to work. I simply tell them now, that they too could stay

home and collect an income if, we could disable their children, stip the

cartiledge out of their knees and pull every back muscle, they could stay home

too. And in a heart beat these people who

put me down, could be in my shoes.

By the way, in Ohio, I have been turned down for housing because of my children.

They are afraid that my kids will ruin their property. That is of course

illegal, but who can afford to hire a lawyer, and the lawyers that handle this

kind of thing will not help either.

No I am not a happy US resident. And I don't think it will get any better as

long as we have these self serving idiots in office.

Sorry, just had to go off on a rant. I'm better now.

God never gives you more than you can

handle. However, sometimes I wish God did not trust me so much.

Mother of

19 FAS

15 Rett Syndrome

14 Autistic

--

__________________________________________________________

Sign-up for your own FREE Personalized E-mail at Mail.com

http://www.mail.com/?sr=signup

[Guest guest]

Were you able to find housing? I mean decent housing that wasnt

discriminatory against your children? Some taxes go to families that need

it some taxes go who knows where. If I ever find out where someone would

be after me lol. There are things going on here in southern colorado I have

never seen go on so much before. My uncle is on SSI. Why he never worked

a day in his life was on every drug there was including peodie, marijuana,

cocaine ect ect. He had 4 children. The government raised them. Well

these drugs burned his brain so now he receives $762 SSI monthly. He didnt

have a work record so it went out of a different account with social

security. I am so sorry you experienced this too. I have to say I know

from experience how annoying this can be! What kind of services

educationally do you receive in Ohio? Did you know if we stayed in NJ we

would of received lots of education for the children based on need and not

on income? So I ask myself why did I leave. Too late now except for the

crying! charlene

-- Re:US

I have found that it is good for me to stay in poverty so I can get the

services that my children need. Of course I can not afford to eat sometimes,

but isn't it nice to know that some taxes are going to families that need it

Of course to get services, you have to find out about them. You have to

scratch and claw your way to the top of lists that are never ending.

I have people in America that are jealous of me because I have an SSI income

and do not have to go to work. I simply tell them now, that they too could

stay home and collect an income if, we could disable their children, stip

the cartiledge out of their knees and pull every back muscle, they could

stay home too. And in a heart beat these people who

put me down, could be in my shoes.

By the way, in Ohio, I have been turned down for housing because of my

children. They are afraid that my kids will ruin their property. That is of

course illegal, but who can afford to hire a lawyer, and the lawyers that

handle this kind of thing will not help either.

No I am not a happy US resident. And I don't think it will get any better as

long as we have these self serving idiots in office.

Sorry, just had to go off on a rant. I'm better now.

God never gives you more than you can

handle. However, sometimes I wish God did not trust me so much.

Mother of

19 FAS

15 Rett Syndrome

14 Autistic

--

__________________________________________________________

Sign-up for your own FREE Personalized E-mail at Mail.com

http://www.mail.com/?sr=signup

[Guest guest]

, Where do you live at in Ohio? The reason I'm asking is

because I live in Ohio. It's not right that you've been turned down

for housing because of your children!!

Take care,

, Mom of Theresia 12 Autism

> I have found that it is good for me to stay in poverty so I can

get the services that my children need. Of course I can not afford

to eat sometimes, but isn't it nice to know that some taxes are

going to families that need it.

> Of course to get services, you have to find out about them. You

have to scratch and claw your way to the top of lists that are never

ending.

> I have people in America that are jealous of me because I have an

SSI income and do not have to go to work. I simply tell them now,

that they too could stay home and collect an income if, we could

disable their children, stip the cartiledge out of their knees and

pull every back muscle, they could stay home too. And in a heart

beat these people who

> put me down, could be in my shoes.

> By the way, in Ohio, I have been turned down for housing because

of my children. They are afraid that my kids will ruin their

property. That is of course illegal, but who can afford to hire a

lawyer, and the lawyers that handle this kind of thing will not

help either.

> No I am not a happy US resident. And I don't think it will get

any better as long as we have these self serving idiots in office.

> Sorry, just had to go off on a rant. I'm better now.

>

>

> God never gives you more than you can

> handle. However, sometimes I wish God did not trust me so much.

> Mother of

> 19 FAS

> 15 Rett Syndrome

> 14 Autistic

>

> --

> __________________________________________________________

> Sign-up for your own FREE Personalized E-mail at Mail.com

> http://www.mail.com/?sr=signup

[Guest guest]

Terri- I think you will really like going to SCIG. It has been a great

move for us. Please let us know how it works out for you as you make the

switch.

Peace Be With You,

Pattie

Don't let your past dictate who you are now, but let it be a part of who you

will become.

_____

Both of my daughters and myself have low B Lymphocyte counts. While we all

have varying levels of IG and subgroup issues....the general feeling is that

there is a problem with the way B-cells are mounting an immune

response...even though...in my case....my immunoglob. levels are normal.

Molly has low IgG2 and 4 sublclasses....Maggie has IgG4 sbclass problems and

has almost triple the normal for IgG2. DOes anyone know anything about

this? Very curious??? We use a different infusion center than UCLA

although it sounds like we all may be getting started on the Vivagam next

week. It will be soooooo nice not to have to spend the day at the infusion

center every 21 days. The doc thinks that, because we are still having

significant and severe breakthrough infections, the new med will provide a

more consistant level of IG and that the preliminary studies show that the

kids with CVID with the problems that we are still encountering do much

better on the Vivagam. I am still learning...but what I know is that the

feeling is that we definately have a genetic linked disorder because of our

B cell problems that all 3 of us have. They want to do a T cell study on

me, thinking that even though my t cells are normal, certain ones of them

may not be working normally. They say it is not possible to test the b cell

function yet...but in the future. We are also getting set up by our

immunologist to have genetic testing done at St Judes. He has been in touch

with the doc that works with B Cell genetic linked disorders and they are

going to try to get us in on testing to find out why this is happening and

what we can expect for our futures.

Terri

_____

[Guest guest]

Welcome Terri,

The way I understand the subclasses is best described as zone defense in

soccer. Each team member is responsible for only 1/4 of the field at

all times. IgG1 guards this fourth, IgG2 guards this one, etc. When

you are missing or are low in one subclass -- the others will try their

best to cover it -- but that in turn makes their areas somewhat weak.

No one knows yet why some bodies can't seem to make the right subclasses

to cover everything. Someday......IVIG replacement covers all four

subclasses of IgG, so is the recommended (and only) treatment.

Hope that helps,

In His service,

dale

[Guest guest]

Hi all

Time a for a very quick update!!

As most of you know already, we are leaving Adelaide. We fly out of here

on Fri 20th Nov at 645pm.

We have nearly filled the skip bin- we are getting moving quotes. So my

nails will be properly ruined by all this packing and moving.

We will put our stuff in storage for as long as it takes, and we shall

be taking a roadtrip to see where we wanna go. Tis perfect timing

really as Trent and Shan have nearly finished the book ( fingers and

toes crossed ) and the kids are a good age to take a few weeks off

school. is not coping well at school, so we would have been

looking a special needs setting for him next year anyways. The house

will be sold, and we will look at renting to start with, then buy again

later when we settle..............

We shall sell the Big Red Bus- and buy something in Sydney- ours doesnt

have air con......so we need a new one..............and we dont have a

cd player.........

Sorta like a Route 66 thing but here in Oz So I will be taking the

address book and the kids will be writing out tons of postcards I

have a Santa key so Santa knows where we are in case we are still in

transit.

Tis sorta scary but exciting too- to have the opportunity to just wing

it for a few weeks and do and go where we like............. I am not

used to winging it, but my Sydney trip taught me that not everything in

life needs to be planned- you can have fun without it........so we are

putting that to the test in a big way You dont get many

opportunities like this in life, so we are grabbing it with both hands

and we are going with the wind.

So most of you wont see much of me for a tad............others will

still get annoying emails and texts Prob more texts than emails As

Trent and I Will have to share a laptop LOL How will we cope????

hehehehehehehe Again- will be interesting ......... Internet cafes here

I come Now just to write down all my passwords so I can still log

into facebook etc.........

Chat soon guys!!!

--

Aussie Leis- mum to nearly 12, Natasha 7 , 6 and Liliana

17 months

Life is too short for drama & petty things, so kiss slowly, laugh insanely, love

truly and forgive quickly

[Guest guest]

Oh Leis, how exciting!!

and I did that when we were younger and had only one toddler (EONS AGO!)

We used a VW camper van to live in.

I think that's one of the best times we had. Some days we would travel 350

miles and others.. 20.. depending on what we would find. checked out all

the different grocery stores and I checked out all the bookstores.

We talk about doing something similar when he retires, and that will be within

the next couple of years, but that of course, depends on how many children,

adults, dependents we have.

Last time we talked about it the grown up children and mates decided THEY wanted

to tag along.

Enjoy! Be safe, and keep in touch!!!!