New Member

Report post · December 2, 2001

-Hi Phyllis:

Thanks for sharing about Chelle. It is so disturbing to read about

how the school allowed her to be teased. One wonders how long it

will take for the schools to understand that this is unacceptable

behavior and not a normal part of growing up.

Meeting others with OCD and not feeling so alone has also been very

helpful to our son, Steve. That is how we started attending the OCF

Conferences as living in an isolated rural area it was very

difficult to find even m.h. professionals who knew about OCD let

alone other sufferers who had been successfully treated.

Have you read the book, " Teaching the Tiger " by Marilyn Dornbusch?

That is aimed at giving ideas for accommodations for kids with ADHD,

TS and OCD. What kinds of accommodations does Chelle need and what

goals do you have for her education and social adjustment? The

answers to these questions can guide you in what to discuss at the

IEP. Good luck, take care, aloha, kathy (h)

kathyh@...

-- In @y..., " ppepe40 " <ppepe40@n...> wrote:

> Hi & Marlys,

>

> My name is Phyllis, and my almost 16-yr old daughter, Chelle

> has TS, OCD, & ADHD. Her name gets added to the list after

> and as a child who also has been in denial,

> doesn't want me to advocate for her in school, doesn't want

> E & RP therapy, and doesn't like me to talk about OCD because

> she says that makes it worse. She says she doesn't think

> about it unless I mention it. Of course, I see the behavior

> that results from it that she doesn't see.

>

> Do your kids have many friends; or, as Chelle, only one

> friend? She is slowly warming up to a couple of girls in

> her school, but they live about 1/2 hour away from us.

>

> Chelle takes meds, finally after many years, without a

> terrible struggle. The meds have helped tremendously with

> her symptoms, especially her TS tics. I'm not sure what to

> attribute it to, because she receives Dexedrine prior to

> coming home from school; but she is wiped out after school

> and sleeps sometimes until 7 or 8 o'clock. Needless to say,

> homework rarely gets done. She's very bright but failing

> school.

>

> We did have a major breakthrough last week. Chelle went to

> her first OCD support group for children and teens. There

> were 6 kids there including Chelle. This was the first time

> she met other kids who were diagnosed with OCD. They were

> just like other kids, except for a few noticable quirks.

> She got along well with them and said she wants to go back

> next week. I think she felt rather safe with them. This

> may give her some of the emotional security she needs with

> peers.

>

> I have found that school has been an extremely difficult

> place for her since 1st grade. Middle school was the worst

> you could imagine. She was teased and taunted

> unmercifully. Things are not quite so bad now that she's

> in 10th grade, but she's still considered a " problem child "

> and her teachers are not as supportive as she needs.

>

> Are your kids in the public schools? What kinds of

> accomodations do you have on their IEP's? Chelle's

> currently in an alternative school that is not working for

> her. We're looking for an approved private school for her

> to attend, but I don't know if that is the answer either. I

> want her to be able to experience as much of a normal teen

> time as possible, but I'm so concerned about her emotional

> health in the public school system. I absolutely cannot

> stand how our kids are treated by their peers, teachers, and

> the system.

>

> We have another IEP meeting coming up in about three weeks.

> Any one have any words of wisdom for me?

>

> Progress, not perfection

> Phyllis

> ppepe40@n...

Report post · December 3, 2001

Dear Phyllis, hi my name is Patty in calif. my daughter has ocd with some

psychiotic traits and she is 12yrs old, i was just wondering my daughter has had

problems in school since 1st grade also and also her peers would you mind

telling me what kind of school behaviors did she have and how was she with her

peers? also my daughter dosent want to talk about it eaither cause she says she

will start thinking of it, this is real confuseing to me ,Im very courious what

your daughters problems in school were. Hang in there i get a feeling you and i

will be talking more, remember youre not alone ok

Patty in calif

Re: New member

-Hi Phyllis:

Thanks for sharing about Chelle. It is so disturbing to read about

how the school allowed her to be teased. One wonders how long it

will take for the schools to understand that this is unacceptable

behavior and not a normal part of growing up.

Meeting others with OCD and not feeling so alone has also been very

helpful to our son, Steve. That is how we started attending the OCF

Conferences as living in an isolated rural area it was very

difficult to find even m.h. professionals who knew about OCD let

alone other sufferers who had been successfully treated.

Have you read the book, " Teaching the Tiger " by Marilyn Dornbusch?

That is aimed at giving ideas for accommodations for kids with ADHD,

TS and OCD. What kinds of accommodations does Chelle need and what

goals do you have for her education and social adjustment? The

answers to these questions can guide you in what to discuss at the

IEP. Good luck, take care, aloha, kathy (h)

kathyh@...

-- In @y..., " ppepe40 " <ppepe40@n...> wrote:

> Hi & Marlys,

>

> My name is Phyllis, and my almost 16-yr old daughter, Chelle

> has TS, OCD, & ADHD. Her name gets added to the list after

> and as a child who also has been in denial,

> doesn't want me to advocate for her in school, doesn't want

> E & RP therapy, and doesn't like me to talk about OCD because

> she says that makes it worse. She says she doesn't think

> about it unless I mention it. Of course, I see the behavior

> that results from it that she doesn't see.

>

> Do your kids have many friends; or, as Chelle, only one

> friend? She is slowly warming up to a couple of girls in

> her school, but they live about 1/2 hour away from us.

>

> Chelle takes meds, finally after many years, without a

> terrible struggle. The meds have helped tremendously with

> her symptoms, especially her TS tics. I'm not sure what to

> attribute it to, because she receives Dexedrine prior to

> coming home from school; but she is wiped out after school

> and sleeps sometimes until 7 or 8 o'clock. Needless to say,

> homework rarely gets done. She's very bright but failing

> school.

>

> We did have a major breakthrough last week. Chelle went to

> her first OCD support group for children and teens. There

> were 6 kids there including Chelle. This was the first time

> she met other kids who were diagnosed with OCD. They were

> just like other kids, except for a few noticable quirks.

> She got along well with them and said she wants to go back

> next week. I think she felt rather safe with them. This

> may give her some of the emotional security she needs with

> peers.

>

> I have found that school has been an extremely difficult

> place for her since 1st grade. Middle school was the worst

> you could imagine. She was teased and taunted

> unmercifully. Things are not quite so bad now that she's

> in 10th grade, but she's still considered a " problem child "

> and her teachers are not as supportive as she needs.

>

> Are your kids in the public schools? What kinds of

> accomodations do you have on their IEP's? Chelle's

> currently in an alternative school that is not working for

> her. We're looking for an approved private school for her

> to attend, but I don't know if that is the answer either. I

> want her to be able to experience as much of a normal teen

> time as possible, but I'm so concerned about her emotional

> health in the public school system. I absolutely cannot

> stand how our kids are treated by their peers, teachers, and

> the system.

>

> We have another IEP meeting coming up in about three weeks.

> Any one have any words of wisdom for me?

>

> Progress, not perfection

> Phyllis

> ppepe40@n...

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Report post · December 3, 2001

Hi carolyn, nice to meet you! Id have to say for your

question on the line between ds and autism, that we

started noticeing my oldest nathan now 10yrs with ds,

autism, add/hd, and ocd, no longer really fit in the

ds catagories or growth and development around age two

, he started having horrible tantrums, that wet noodle

thing, uugh, biting hitting, head banging, little to

no eyecontact, eloping from anywhere even home and

school, very antisocial always parallel plays, mostly

still does, little to no speech, until he was around

4yrs the it was only echolalia, wchich he continues

today, but uses way more speech over this last year,

and has bee using sign and pecs very well since about

3yrs, also likes to rock --stertypical behavior or

repetive movements, and the dangling of toys mostly

shoe strings, but also anything dangly he could get

hands on, didnt play with toys appropriately does

some now, major sesory issues especially tactile, food

issues, and very little sleep. im sure i could go on,

and many of the parents on the list will have similair

lists. But i mainly think the line issue depends on

how the child is developing according to usual set

patterns and goals. again i like to welcome you to the

group, sorry its soo long, hope i didnt scare yo

away,lol, shawna, mom to nathan 10yrs, and nicholas 9yrs.

=====

shawna

__________________________________________________

Report post · December 3, 2001

> Hi & Marlys,

>

> My name is Phyllis, and my almost 16-yr old daughter, Chelle

> has TS, OCD, & ADHD. Her name gets added to the list after

> and as a child who also has been in denial,

> doesn't want me to advocate for her in school, doesn't want

> E & RP therapy, and doesn't like me to talk about OCD because

> she says that makes it worse.

> Do your kids have many friends; or, as Chelle, only one

> friend? She is slowly warming up to a couple of girls in

> her school, but they live about 1/2 hour away from us.

>

Hi Phyllis,

I'm sorry I'm so late in replying to your questions. You asked about

friends. , age 16, has always been the type to have only one

or two good friends. When she was 12 (undiagnosed), I remarried,

moved her across the country, she hit puberty... and all H*** broke

loose as far as OCD, though I didn't understand what " it " was at the

time... Anyway, she didn't transition well at all, became depressed,

had SIB, and thoughts of suicide... very bad times back then. (My new

husband couldn't deal with us and moved out... and I had sold my house

and quit my job to move here to join him...sigh.) Anyway, she has

never been a " normal " teenager like I expected to have - you know the

type of girl who needs her phone time limited, dating limits set,

curfews, etc. I need to ENCOURAGE her to get out of her room, SET UP

social occasions for her. For a long time, it was hard for me to

accept and understand this, as it's so opposite of how I was as a

teenager. Now, she has one good friend, but she never calls her or

initiates any activity. If I suggest to have a friend over, she will

tell me that she doesn't HAVE any friends. But, then she refers to

the other kids in the marching band as a " family " of friends because

they spend so much time together (crazy-long rehearsals and many

competitions, incl. travel time) I volunteer with the band and have

ample opportunity to observe her, and she certainly gets along and

fits in fine... so I don't know if it's a problem or not that she

doesn't have many friends. It certainly concerns me. My counselor

reminds me that I am an extrovert and that is an introvert,

and that is the difference, but I don't know.

>She met other kids who were diagnosed with OCD. They were

> just like other kids, except for a few noticable quirks.

> She got along well with them and said she wants to go back

> next week. I think she felt rather safe with them. This

> may give her some of the emotional security she needs with

> peers.

How great that she met others with OCD!

> Are your kids in the public schools? What kinds of

> accomodations do you have on their IEP's?

is in the public school. Middle school was pretty horrible,

but that's when she was in undiagnosed depression. She started high

school on much better footing. School is still the major stressor in

her life, though. (She does well academically, but her emotional

health is a concern.) She is a perfectionist, and sets unreasonably

high standards for herself, then feels defeated when she can't attain

them, or gets overwhelmed in a large research project... sigh. In

addition, some teachers are more accepting and flexible than others.

Only a month ago, I overcame my fears, and her objections, and met

with her teachers and the school counselors for the first time.

Though I was terrified, it went fine. I have not yet pursued a 504

for her, but am considering it. (I've been very slow to figure this

all out, and advocate for her, so maybe things will get better for her

in school as I do MY job.)

> We have another IEP meeting coming up in about three weeks.

> Any one have any words of wisdom for me?

Im sorry that Chelle's school is not working out well for her. How

did the IEP meeting go? Thinking kind thoughts for you both.

Marlys in SC

Report post · December 6, 2001

Dear Phyllis,

My son, , just turned 17 on Dec. 3 doesn't

socialize like he use to before the OCD was so strong.

Right now he has a very nice girl friend that he

enjoys spending the majority of his time with. His

OCD is pretty strong right now and he seems stressed a

lot. We are currently encountering another battle

with our school system. is a junior right now.

His last semester of his sophomore year, he was only

in school half day b/c of the severity of his OCD. He

failed three of the four classes he was in. 's

educational goals all are surrounded in the fishing

industry. Anyway, in a meeting at the end 's

sophomore year, the special ed director promised

if he passed all classes this term in his

Junior year they would make sure he did his vocational

training a local state run fish hatchery. Well,

guess what is passing all his classes, and our

wonderful school system is trying to back out of

's training at the fishery and sugar coat him

entering the landscaping/grounds program at the local

voc tech center. My advise to friends out there is to

make sure you get everything in writing. Good Luck.

--- mvistad@... wrote:

>

> > Hi & Marlys,

> >

> > My name is Phyllis, and my almost 16-yr old

> daughter, Chelle

> > has TS, OCD, & ADHD. Her name gets added to the

> list after

> > and as a child who also has been in

> denial,

> > doesn't want me to advocate for her in school,

> doesn't want

> > E & RP therapy, and doesn't like me to talk about

> OCD because

> > she says that makes it worse.

>

> > Do your kids have many friends; or, as Chelle,

> only one

> > friend? She is slowly warming up to a couple of

> girls in

> > her school, but they live about 1/2 hour away from

> us.

> >

>

> Hi Phyllis,

> I'm sorry I'm so late in replying to your questions.

> You asked about

> friends. , age 16, has always been the type

> to have only one

> or two good friends. When she was 12 (undiagnosed),

> I remarried,

> moved her across the country, she hit puberty... and

> all H*** broke

> loose as far as OCD, though I didn't understand what

> " it " was at the

> time... Anyway, she didn't transition well at all,

> became depressed,

> had SIB, and thoughts of suicide... very bad times

> back then. (My new

> husband couldn't deal with us and moved out... and I

> had sold my house

> and quit my job to move here to join him...sigh.)

> Anyway, she has

> never been a " normal " teenager like I expected to

> have - you know the

> type of girl who needs her phone time limited,

> dating limits set,

> curfews, etc. I need to ENCOURAGE her to get out of

> her room, SET UP

> social occasions for her. For a long time, it was

> hard for me to

> accept and understand this, as it's so opposite of

> how I was as a

> teenager. Now, she has one good friend, but she

> never calls her or

> initiates any activity. If I suggest to have a

> friend over, she will

> tell me that she doesn't HAVE any friends. But,

> then she refers to

> the other kids in the marching band as a " family " of

> friends because

> they spend so much time together (crazy-long

> rehearsals and many

> competitions, incl. travel time) I volunteer with

> the band and have

> ample opportunity to observe her, and she certainly

> gets along and

> fits in fine... so I don't know if it's a problem or

> not that she

> doesn't have many friends. It certainly concerns

> me. My counselor

> reminds me that I am an extrovert and that

> is an introvert,

> and that is the difference, but I don't know.

>

> >She met other kids who were diagnosed with OCD.

> They were

> > just like other kids, except for a few noticable

> quirks.

> > She got along well with them and said she wants to

> go back

> > next week. I think she felt rather safe with

> them. This

> > may give her some of the emotional security she

> needs with

> > peers.

>

> How great that she met others with OCD!

>

> > Are your kids in the public schools? What kinds

> of

> > accomodations do you have on their IEP's?

>

> is in the public school. Middle school was

> pretty horrible,

> but that's when she was in undiagnosed depression.

> She started high

> school on much better footing. School is still the

> major stressor in

> her life, though. (She does well academically, but

> her emotional

> health is a concern.) She is a perfectionist, and

> sets unreasonably

> high standards for herself, then feels defeated when

> she can't attain

> them, or gets overwhelmed in a large research

> project... sigh. In

> addition, some teachers are more accepting and

> flexible than others.

> Only a month ago, I overcame my fears, and her

> objections, and met

> with her teachers and the school counselors for the

> first time.

> Though I was terrified, it went fine. I have not

> yet pursued a 504

> for her, but am considering it. (I've been very slow

> to figure this

> all out, and advocate for her, so maybe things will

> get better for her

> in school as I do MY job.)

>

> > We have another IEP meeting coming up in about

> three weeks.

> > Any one have any words of wisdom for me?

>

> Im sorry that Chelle's school is not working out

> well for her. How

> did the IEP meeting go? Thinking kind thoughts for

> you both.

>

> Marlys in SC

>

__________________________________________________

Report post · December 28, 2001

I too will be watching for any advice on this matter,My son has the same

exact problems and I have tried everything.

New Member

> Hey guys:

>

> I have a couple I problem behaviors I could use some input on --

>

> 1 - Head banging (not repeatedly, he just bangs once when he gets mad.

>

> 2 - Feces smearing (we're working on toilet training, but not there yet)

>

> 3 - Spitting - he spits and smears it with his hand or foot

>

> 4 - Sleeping - Wakes up in the middle of the night alot and won't go back

to sleep

>

> Any advice or thoughts are appreciatied

>

> CJ (Mother of child diag. with PDD-NOS age 3 years)

>

Report post · December 28, 2001

> Hey guys:

>

> I have a couple I problem behaviors I could use some input on --

>

> 1 - Head banging (not repeatedly, he just bangs once when he gets

mad.

>

> 2 - Feces smearing (we're working on toilet training, but not there

yet)

>

> 3 - Spitting - he spits and smears it with his hand or foot

>

> 4 - Sleeping - Wakes up in the middle of the night alot and won't

go back to sleep

>

> Any advice or thoughts are appreciatied

>

> CJ (Mother of child diag. with PDD-NOS age 3 years)

>

Self injury, stereotypies, screaming, and other unwanted behaviors

can all be forms of communication. They do not necessarily have to

serve a self-stimulatory function.

These behaviors can be the " equivalent " of a person saying, " Please

leave me alone right now....I want that....Pay attention to me, etc. "

In these cases, the response that another person makes will determine

if the behavior persists.

One child's feces smearing can occur for reasons that are completely

different from another child's. There is a case that a friend of

mine is working now that involves an older child who excretes in his

pants, grabs the feces in both his hands, and rams his head into a

wall. He has hit his head into walls so much that his skull is

soft. When the people who work with him try to prevent him from

hitting his head, he smears the feces, which he's been holding, on

them.

Another consideration is that these behaviors could be automatically

reinforcing [like scratching an itch or producing a desirable

sensation]. In these cases, the response that another person makes

could be irrelevant.

Lastly, the same behavior can serve multiple functions; like a baby's

cry. The crying might be because the baby wants food, wants to be

picked up, or because it has a safety pin stuck in its side, etc. If

a person tried to feed the baby when it had the safety pin stuck in

its side, the person wouldn't get too far in helping the baby. The

same is true for the feces smearer. If the child is doing it because

of the sensations produced, then taking away a toy or sending the

child to time-out is not likely to solve the problem. Knowing why

the behaviors are occurring is the best chance to solving the problem.

The way to determine the function of the behavior is to conduct a FBA

(Functional Behavioral Analysis).

Report post · December 29, 2001

Crystal,

Is your son in school or getting some type of services. It sounds

like something is going on if youre working on toliet training. Head

banging could be a result of not being able to communicate properly,

im not sure what communication system your son uses-verbal or pecs. I

think the feces smearing passes, we went through that. Im not sure

what we did, if anything. I cant give much advice on this one. a lot

of stuff with spitting and smearing I believe is sensory, how the

person reacts to their environment. Sometimes you can find a

replacement behavior-like finger painting or something that might

give the same input as the spitting or smearing. My son's first

speech teacher told us to teach our son to paint because he did a lot

of hand flapping and made a lot of circular movements with his hands.

Now he likes to color a lot, and the hand flapping is history. Sleep

is also a big issue, some people have tried to use behavioral

methods, but, i think a lot of people use melotonin or a medication

to aid in sleep. That is something that should be discussed with a

MD, a neurologist who knows the more medical aspects of autism.

Thea

> Hey guys:

>

> I have a couple I problem behaviors I could use some input on --

>

> 1 - Head banging (not repeatedly, he just bangs once when he gets

mad.

>

> 2 - Feces smearing (we're working on toilet training, but not there

yet)

>

> 3 - Spitting - he spits and smears it with his hand or foot

>

> 4 - Sleeping - Wakes up in the middle of the night alot and won't

go back to sleep

>

> Any advice or thoughts are appreciatied

>

> CJ (Mother of child diag. with PDD-NOS age 3 years)

>

Report post · December 29, 2001