Re: new to group- help, so discouraged!

[Guest guest]

,

I feel so badly for you. I've " been there " in many similar ways. But I'm also

here to tell you it does get better. What made the difference for my son's OCD

was SSRI medication--to an extent--and CBT with ERP therapy with a psychologist

who specializes in it. He's been doing the CBT w/ ERP for 2.5 years now and

he's gotten better and better. He went away to college last year! He continued

weekly 20-30 min. weekly sessions with his psychologist by phone. Is your

daughter under the care of a therapist who specializes in CBT w/ ERP? Plus, if

the Celexa was helping, she might need another SSRI med to substitute for it.

You sound really knowledgeable about OCD, so probably don't need a book

recommendation, but the one that helped me the most was Freeing Your Child from

Obsessive-Compulsive Disorder by Dr. Tamar Chansky.

Others on this list will be able to give you more specific suggestions. Some

have children who've been admitted to the Hospital for intensive

inpatient therapy for OCD. Maybe it wouldn't hurt to get your daughter on the

waiting list for --just in case.

People outside the household (and sometimes even some inside the household)

often don't 'get it'. But, I assure you, everyone here does.

> My daughter is nine years old and has high functioning autism, OCD,

anxiety,sensory processing disorder and a possible dx of atypical bipolar

disorder.

>

> I am so very frustrated and disheartened. Her OCD is the " just right " type and

she has many riutals in routine. Particularly in getting dressed and getting

into bed. The big problem with her riutals is that I am involved in all of them.

I have to stand a certain place, hand her her clothing a certain way, do things

in a very specific way, etc. She often has me re-do things because I didnt do it

right or, the big one- she " wasnt ready " . If I try to remove myself or do it

differently, etc. She freaks out and it takes even longer. She can scream for

hours. The other part of it is she talks in a very rude tone of voice, yells at

me often. I do ok with it for a while and then I am just exhausted by it- it

takes 45 mins on a good day for her to do the process of getting into bed (just

arranging the pillow, bedding, stuffed animals)which should take all of 5

minutes at most. It has taken us up to three hours. It may take 1 hour to put on

a leotard for gymnastics. She has to arrange her underwear over and over. The

funny thing is. Some days she is better. She still does the same rituals, but

she is less agitated, she doesnt have to repeat it as much, etc. And it takes

much less time. When things are bad especially when I am tired or weve had many

bad days in a row, I end up yelling at her, trying to explain over and over

which only makes it worse and then I am left with feeling so bad after. She

constantly says I am so mean. That I am so unfair to her, etc. Reasoning with

her is impossible.

>

> She does so well at school. She displays symptoms of anxiety but no rituals or

meltdowns. And sometimes I just start to feel like its me. I talked to my mom

today about her suggestion for my daughter to take the bus next year to school

(I think I will be having my kinder age son take it, so he's not late to school)

and I feel like that is totally unrealistic b/c we have been in crisis mode with

the transition to school all year. So much so that we have been referred to the

truancy board and now are dealing with a special ed lawyer to get Makenna an

accomodation of a shortened school day. My mom was so dismissive. She said

" well, you never know with kids. They just change all of a sudden... Maybe

taking the bus would be motivation to get out the door on time " . We've had this

discussion before and I can just tell when she disapproves. This would be

motivation? She's afraid to take the bus. I have a behavioral plan in place for

summer school to get her to take it. Am I crazy, here? My own mom doesnt get it

and it hurts.

>

> I am sorry to vent. I just feel very alone. The school doesnt get it I feel

like no one gets it. Does any one have experience with OCD that involves the

control of another person? Its maddening. I need help. Suggestions?

>

> Also, my daughter has a huge fear of wasps and bees and will not go outside.

She has not played outside this summer at all. Any ideas?

>

> She's on risperdal and metadate. Recently taken off celexa due to new cardiac

warnings about the drug.

>

> Thanks,

>

>

>

[Guest guest]

One hard thing I had to learn was 'Don't help' Don't " feed the monster "

 

I learned that I make things worse, much worse, if I play along and stand

exactly here, or hand this to her exactly that way, or .... if I in anyway give

attention to the behaviors, I make it worse.

 

I make it more real in her eyes, I make the OCD bigger then she can alone deal

with, I make the OCD more powerful each time I give in an help or assist or play

a role in the behavior .... it was a hard one for me to learn, but has helped SO

much ... my child was angry with me, blamed me, accused me of not caring about

her, not loving her .... and but, I learned to hold the line ... and, for her,

it made a big big difference.

 

-JuLeah

 

________________________________

To:

Sent: Thursday, July 5, 2012 3:21 PM

Subject: Re: new to group- help, so discouraged!

,

I feel so badly for you.  I've " been there " in many similar ways.  But I'm also

here to tell you it does get better.  What made the difference for my son's OCD

was SSRI medication--to an extent--and CBT with ERP therapy with a psychologist

who specializes in it.  He's been doing the CBT w/ ERP for 2.5 years now and

he's gotten better and better.  He went away to college last year!  He continued

weekly 20-30 min. weekly sessions with his psychologist by phone.  Is your

daughter under the care of a therapist who specializes in CBT w/ ERP?  Plus, if

the Celexa was helping, she might need another SSRI med to substitute for it. 

You sound really knowledgeable about OCD, so probably don't need a book

recommendation, but the one that helped me the most was Freeing Your Child from

Obsessive-Compulsive Disorder by Dr. Tamar Chansky.

Others on this list will be able to give you more specific suggestions.  Some

have children who've been admitted to the Hospital for intensive

inpatient therapy for OCD.  Maybe it wouldn't hurt to get your daughter on the

waiting list for --just in case.

People outside the household (and sometimes even some inside the household)

often don't 'get it'.  But, I assure you, everyone here does.

> My daughter is nine years old and has high functioning autism, OCD,

anxiety,sensory processing disorder and a possible dx of atypical bipolar

disorder.

>

> I am so very frustrated and disheartened. Her OCD is the " just right " type and

she has many riutals in routine. Particularly in getting dressed and getting

into bed. The big problem with her riutals is that I am involved in all of them.

I have to stand a certain place, hand her her clothing a certain way, do things

in a very specific way, etc. She often has me re-do things because I didnt do it

right or, the big one- she " wasnt ready " . If I try to remove myself or do it

differently, etc. She freaks out and it takes even longer. She can scream for

hours. The other part of it is she talks in a very rude tone of voice, yells at

me often. I do ok with it for a while and then I am just exhausted by it- it

takes 45 mins on a good day for her to do the process of getting into bed (just

arranging the pillow, bedding, stuffed animals)which should take all of 5

minutes at most. It has taken us up to three hours. It may take 1 hour to put on

a leotard for

gymnastics. She has to arrange her underwear over and over. The funny thing is.

Some days she is better. She still does the same rituals, but she is less

agitated, she doesnt have to repeat it as much, etc. And it takes much less

time. When things are bad especially when I am tired or weve had many bad days

in a row, I end up yelling at her, trying to explain over and over which only

makes it worse and then I am left with feeling so bad after. She constantly says

I am so mean. That I am so unfair to her, etc. Reasoning with her is impossible.

>

> She does so well at school. She displays symptoms of anxiety but no rituals or

meltdowns. And sometimes I just start to feel like its me. I talked to my mom

today about her suggestion for my daughter to take the bus next year to school

(I think I will be having my kinder age son take it, so he's not late to school)

and I feel like that is totally unrealistic b/c we have been in crisis mode with

the transition to school all year. So much so that we have been referred to the

truancy board and now are dealing with a special ed lawyer to get Makenna an

accomodation of a shortened school day. My mom was so dismissive. She said

" well, you never know with kids. They just change all of a sudden... Maybe

taking the bus would be motivation to get out the door on time " . We've had this

discussion before and I can just tell when she disapproves. This would be

motivation? She's afraid to take the bus. I have a behavioral plan in place for

summer school to get her to

take it. Am I crazy, here? My own mom doesnt get it and it hurts.

>

> I am sorry to vent. I just feel very alone. The school doesnt get it I feel

like no one gets it. Does any one have experience with OCD that involves the

control of another person? Its maddening. I need help. Suggestions?

>

> Also, my daughter has a huge fear of wasps and bees and will not go outside.

She has not played outside this summer at all. Any ideas?

>

> She's on risperdal and metadate. Recently taken off celexa due to new cardiac

warnings about the drug.

>

> Thanks,

>

>

>

[Guest guest]

Hi , oh I soooo " get it. " My OCD son, , is now 23, his OCD began

around age 11.5 (6th grade). He had the " just right " kind when it began too.

Also a feeling that " something bad would happen to him " if he didn't do these

things or get that " right " feeling.

He didn't make demands on me, but his twin (not identical) went thru an OCD

episode around toddler-age and would have me walk in a room a certain way (X

steps in, X steps to left, X steps forward...) and throw crying meltdowns if I

messed up.

Bedtime for could take a 1/2 hour or 3 hours. He would get on his bed

but it didn't feel " right " or wasn't the " right way " or something. So he had to

get back up and try again; and again and again.... Interesting he rarely had a

problem any other time of the day in getting on, or up off, the bed if he was

gonna sit on it and play video games. But the kids watched TV in my bedroom,

and he could do the same thing in there, trying to get on my bed to sit and

watch TV. He also had a lot of " touching " issues, might touch something and get

" stuck " feeling it until he got that " feeling. " Getting dressed in the a.m. he

had this thing with his socks, where he'd be sitting down to put them on but

have to put a sock over each knee, sorta laying along his leg, and he'd just sit

there/paused; waiting on that " feeling " I guess. That one wasn't too bad, I'd

prompt him a couple times to " get going " so we would get to school and he seemed

to shake that one off more easily than the other things.

His writing and reading were also affected at school. We did get there on time.

OCD made it difficult for him to complete his work though. But what we did, and

you should if you haven't, is set up a 504 Plan for him. It's similar to an IEP

if you have heard of them. (If she has an IEP you can just add to it.) We set

up accommodations for him due to his OCD, where it was causing problems.

Well...actually he also had gotten a " dysgraphia " diagnosis regarding his

writing problem (handwriting), and the accommodations for it sorta fell in with

what we needed for his OCD.

Hate you got in trouble with a truancy issue for being late. Hope that goes

well with the shortened day.

Can you tell much difference, good or bad, since stopping the Celexa?

was on Celexa in 9th and 10th grade and did really well on it for his OCD. He

also has a diagnosis of HFA/Aspergers. But of my 3 sons, he is the one I never

had behavior or discipline problems with. Now a bit of a temper when OCD

started, but never towards me, just a bit snappy at times.

And we parents all get sooo frustrated at OCD! I had to apologize more than

once to , telling him I know it felt like I didn't like *him* but it was

OCD I was upset about and fed up with, not him. He once said " well how do you

think *I* feel?!! " Sigh!

Have you read any children's books to her about OCD? There are some good ones

out there she would probably enjoy. Once she gains an understanding about OCD,

it should help her to understand how you need to fight against it and be easier

to come up with a Plan for you and her to begin to work on bossing back or not

listening to OCD, pick 1 or 2 things to start with working on; sorta ignore the

rest while you work on the things (behaviors/rituals) you picked out.

Glad you found our group!

single mom, 3 sons

, OCD, dysgraphia, Aspergers; BS in Biology

-- In , " katie.torresnb " wrote:

>

> My daughter is nine years old and has high functioning autism, OCD,

anxiety,sensory processing disorder and a possible dx of atypical bipolar

disorder.

>

> I am so very frustrated and disheartened. Her OCD is the " just right " type

and she has many riutals in routine. Particularly in getting dressed and

getting into bed. The big problem with her

[Guest guest]

I have gotten dragged into my childs rituals in past and doing what they want

SEEMS like the path of least resistance in the moment, but it does feed the OCD.

In order to treat the OCD you need to try to see a good therapist who does CBT/

ERP with young children ( hard to find unless you live in a city and even then

sometimes). YOu can begin doing CBT/ERP with her on your own, but this will

involve explaining to her why you are not helping wi th the ritual, and being

ready for a meltdown. If you look back through old posts, I have a detailed

explanation of how to do CBT/ERP on things. Get her on board, pick something

easy and work on it consciously, not doing what the OCD wants . Set aside a lot

of time for this, use a reward system and chart her anxiety level. If you need

me to hunt down the old post, I probably can. I dont have time right now to

look, but can if anyone wishes.

[Guest guest]

Our situation is very very similar. I have been working with

a behaviorist at Yale Parent and Child Conduct Clinic for

two years (over the phone).

My daughter gets aggressive with me from time to time and it

is always when I get lax with our behavior plan (there is not

any reasoning with my daughter either).

Since my daughter has Asperger (close enough not exactly) she always has one

thing she demands having more and more of, that is the

thing I use to motivate her behavior.

We still have some very bad incidents when I don't give

into her demands, but I know what to do.

My coping has dramatically improved. I take zoloft in a low dose and I am now I

am able to accept the way things are. And just do what I

can.

Take care,

Pam

>

> My daughter is nine years old and has high functioning autism, OCD,

anxiety,sensory processing disorder and a possible dx of atypical bipolar

disorder.

>

> I am so very frustrated and disheartened. Her OCD is the " just right " type

and she has many riutals in routine. Particularly in getting dressed and

getting into bed. The big problem with her riutals is that I am involved in all

of them. I have to stand a certain place, hand her her clothing a certain way,

do things in a very specific way, etc. She often has me re-do things because I

didnt do it right or, the big one- she " wasnt ready " . If I try to remove myself

or do it differently, etc. She freaks out and it takes even longer. She can

scream for hours. The other part of it is she talks in a very rude tone of

voice, yells at me often. I do ok with it for a while and then I am just

exhausted by it- it takes 45 mins on a good day for her to do the process of

getting into bed (just arranging the pillow, bedding, stuffed animals)which

should take all of 5 minutes at most. It has taken us up to three hours. It may

take 1 hour to put on a leotard for gymnastics. She has to arrange her

underwear over and over. The funny thing is. Some days she is better. She

still does the same rituals, but she is less agitated, she doesnt have to repeat

it as much, etc. And it takes much less time. When things are bad especially

when I am tired or weve had many bad days in a row, I end up yelling at her,

trying to explain over and over which only makes it worse and then I am left

with feeling so bad after. She constantly says I am so mean. That I am so

unfair to her, etc. Reasoning with her is impossible.

>

> She does so well at school. She displays symptoms of anxiety but no rituals

or meltdowns. And sometimes I just start to feel like its me. I talked to my

mom today about her suggestion for my daughter to take the bus next year to

school (I think I will be having my kinder age son take it, so he's not late to

school) and I feel like that is totally unrealistic b/c we have been in crisis

mode with the transition to school all year. So much so that we have been

referred to the truancy board and now are dealing with a special ed lawyer to

get Makenna an accomodation of a shortened school day. My mom was so

dismissive. She said " well, you never know with kids. They just change all of

a sudden... Maybe taking the bus would be motivation to get out the door on

time " . We've had this discussion before and I can just tell when she

disapproves. This would be motivation? She's afraid to take the bus. I have a

behavioral plan in place for summer school to get her to take it. Am I crazy,

here? My own mom doesnt get it and it hurts.

>

> I am sorry to vent. I just feel very alone. The school doesnt get it I feel

like no one gets it. Does any one have experience with OCD that involves the

control of another person? Its maddening. I need help. Suggestions?

>

> Also, my daughter has a huge fear of wasps and bees and will not go outside.

She has not played outside this summer at all. Any ideas?

>

> She's on risperdal and metadate. Recently taken off celexa due to new cardiac

warnings about the drug.

>

> Thanks,

>

>

[Guest guest]

Thank you all for your replies. I agree with you about feeding the OCD. I dont

know how else to survive at this point. I have to tell you, my daughter does

not do ANYTHING for herself- no independent skills and everything from the

smallest thing (turning on the tv, putting a DVD in, sitting a certain place,

getting in the car) involves me and her autism on top of the OCD lends extreme

rigidity to it. It doesnt even have to be a ritual, just rigid about it. I

have another child to care for and her care and demands already tip the scales

so much so that he does not get what he needs often. Further, all I have read

on ERP states that the person has to buy into it. They have to recognize it as

a problem and want to change it. My daughter (due to her autism) is not able to

do this. She could care less about how much of a burden it is and does not see

it as a problem for herself. You cannot not even engage her in a conversation

about it. Is it true that she must buy into it? Or can I work on things

without this piece? We live in Huntington Beach, California. Does anyone know

of a good therapist in Orange County, CA area? Also, we are without private

healthcare insurance right now because my husband lost his job recently. My

daughter has Medi-Cal through a medicaid waiver program through our local

Regional Center services. So we do have that but I dont know where to start

with a therapist. We tried seeing one about 6 months ago, but she just didnt

seem to know what she was doing- not at all versed in autism spectrum disorders

or OCD so we stopped going. And if anyone one has ideas about mu daughter being

so afraid of bees and wasps I would really appreciate it. She will not go

outside at all. This is just since summer time and we need to do something

about it pronto. Thanks again for your help and support!

To:

From: mario.trabulsy@...

Date: Fri, 6 Jul 2012 12:48:51 +0000

Subject: Re: new to group- help, so discouraged!

I have gotten dragged into my childs rituals in past and doing what they

want SEEMS like the path of least resistance in the moment, but it does feed the

OCD. In order to treat the OCD you need to try to see a good therapist who does

CBT/ ERP with young children ( hard to find unless you live in a city and even

then sometimes). YOu can begin doing CBT/ERP with her on your own, but this

will involve explaining to her why you are not helping wi th the ritual, and

being ready for a meltdown. If you look back through old posts, I have a

detailed explanation of how to do CBT/ERP on things. Get her on board, pick

something easy and work on it consciously, not doing what the OCD wants . Set

aside a lot of time for this, use a reward system and chart her anxiety level.

If you need me to hunt down the old post, I probably can. I dont have time

right now to look, but can if anyone wishes.

[Guest guest]

- I can identify with so many things you have said - too many to even

begin to describe!! You are doing so well to already be in this group, knowing

what the problem is, and ready to tackle it!!

My son did not seem to care at all about how his behaviors were affecting the

rest of us. How could he? His brain was beating him up, saying he had to do

them! I wish I would have known how, instead of putting guilt trips on him, to

begin reminding him of what he's missing out on. Then say, " How about if we

start working on this one thing (pick whatever's most disruptive right now). " If

it's going outside, say, " Let's do a little experiment and see if you can go

outside and count to 2 and come back in. Then I'll give you an M and M. " Or

whatever will make it worth it to your dd. If she won't do 2 seconds, try 1. If

she won't go out, have her open the door a crack. Whatever thing she CAN do that

moves her that direction. Then give her the treat.

One thing that is helpful is to ask her, " How anxious were you? If 10 is really

really scared, were you a 2 or 3? " That helps her realize, hey, maybe she wasn't

petrified after all. She has to think about how it wasn't as scary as she

thought, and how she is really brave.

Then you keep progressing toward her getting out the door, and staying outside.

Keep reminding her of all the fun things she can do. Do you have a pool or

sprinkler or something she can look at and really want to go outside for? A dog?

Make it fun if you have a sense of humor - always a challenge for me! Have

your other child run around outside like a giant wasp? Laugh at how silly he is?

You can also strike a deal with her. " You do the experiment, and I'll turn on

the TV when you come back. " The main thing is to direct your incentives toward

the ERPS. Put a chart on the wall showing her progress. After so many stickers,

she gets a really big treat. Mostly praising her for her courage and

determination to do it in spite of her fear.

Also giving her real information about how bee and wasp stings are treated, and

everyone gets them sometimes, here's what we do, everybody gets better, you had

them when you were little - don't harp on it but get the information in there

for her to think about.

Hope this helps some - I know how frustrating it is!

Rhonda

Re: new to group- help, so discouraged!

I have gotten dragged into my childs rituals in past and doing what they

want SEEMS like the path of least resistance in the moment, but it does feed the

OCD. In order to treat the OCD you need to try to see a good therapist who does

CBT/ ERP with young children ( hard to find unless you live in a city and even

then sometimes). YOu can begin doing CBT/ERP with her on your own, but this

will involve explaining to her why you are not helping wi th the ritual, and

being ready for a meltdown. If you look back through old posts, I have a

detailed explanation of how to do CBT/ERP on things. Get her on board, pick

something easy and work on it consciously, not doing what the OCD wants . Set

aside a lot of time for this, use a reward system and chart her anxiety level.

If you need me to hunt down the old post, I probably can. I dont have time

right now to look, but can if anyone wishes.

[Guest guest]

Hi , independent skills can be difficult for those with autism. However

things like turning on the TV, the DVD and other you mention all sound like OCD,

those skills aren't lacking with autism. The rigidness can go with both.

As I may have said before, my son had a " touching " problem with OCD where he

could get stuck feeling of something he touched or repeating things, etc. So he

avoided. He also wouldn't pick up a TV remote to change the channel, as he knew

he may get stuck touching it for minutes or hours until it felt " right " so he'd

avoid doing it. Once we got past all the " touching " issues (most went away with

inositol powder over time, tho we did work on things too) and he could pick up

the TV remote, he couldn't change a channel; might get stuck just scrolling

through/repeating. So yep, I changed the channels, turned the TV on/off, all

that too. We were working on other OC behaviors, but I'd remind him, often,

we're gonna work on this stuff at some point!

Sooo..tho your daughter doesn't recognize some things as OCD, or won't admit it,

she sounds like maybe she has a feeling something bad will happen if she does

this/that or doesn't sit in her chair (or sits anywhere else), and thus avoids

it. So you can still work on this from a " behavioral " standpoint, if she

doesn't get it as OCD, tell her it's a habit or behavior that needs changed.

Pick one habit to work on changing. With , once he could pick up the TV

remote, I'd tell him to try to change a channel. I could just watch him

hesitate, see it in his face, the thoughts, the effort; I'd wait 30 sec and say

ok I'd do it, we'll try again later. And that's how we proceeded with that, I'd

say try, then wait.... Just the " effort " , that mental push he would try to give

himself counted as trying. And eventually one day he did it!

didn't want to talk about his OCD either. Sometimes with those on the

spectrum of autism, they just can't express what exactly they are feeling. So

it might be that, or it could be OCD won't let her say anything. So I did the

talking about OCD, whether he heard me or not, lol.

Can't recall, have you had a chance to read any parent books about having a

child with OCD? I think once you grasp how the therapy should work, how to

treat OCD, that you should be able to come up with a way or two to work on

things, whether you label it OCD or not.

And medication could be a great help with anxiety or just " relaxing " OCD a bit

so she is less rigid and can work easier on changing " behavior. "

Quick thoughts, hang in there!

>

>

> Thank you all for your replies. I agree with you about feeding the OCD. I

dont know how else to survive at this point. I have to tell you, my daughter

does not do ANYTHING for herself- no independent skills and everything from the

smallest thing (turning on the tv, putting a DVD in, sitting a certain place,

getting in the car) involves me and her autism on top of the OCD lends extreme

rigidity to

[Guest guest]

Thank you so much for your input. I just ordered a couple of the recommended

books so hopefully that will help. I still have not had a reply about any

therapists, though. We live in Huntington Beach, CA. She has a BCBA that comes

into the home every other week but that is not helping at this point. She is on

Metadate CD for ADHD and Risperdal for the rigidity. We have tried zoloft and

celexa, tenex, ativan, guanficine. Dont know where to go from here.... Thanks

again!

To:

From: @...

Date: Mon, 9 Jul 2012 22:58:50 +0000

Subject: Re: new to group- help, so discouraged!

Hi , independent skills can be difficult for those with autism.

However things like turning on the TV, the DVD and other you mention all sound

like OCD, those skills aren't lacking with autism. The rigidness can go with

both.

As I may have said before, my son had a " touching " problem with OCD where he

could get stuck feeling of something he touched or repeating things, etc. So he

avoided. He also wouldn't pick up a TV remote to change the channel, as he knew

he may get stuck touching it for minutes or hours until it felt " right " so he'd

avoid doing it. Once we got past all the " touching " issues (most went away with

inositol powder over time, tho we did work on things too) and he could pick up

the TV remote, he couldn't change a channel; might get stuck just scrolling

through/repeating. So yep, I changed the channels, turned the TV on/off, all

that too. We were working on other OC behaviors, but I'd remind him, often,

we're gonna work on this stuff at some point!

Sooo..tho your daughter doesn't recognize some things as OCD, or won't admit it,

she sounds like maybe she has a feeling something bad will happen if she does

this/that or doesn't sit in her chair (or sits anywhere else), and thus avoids

it. So you can still work on this from a " behavioral " standpoint, if she

doesn't get it as OCD, tell her it's a habit or behavior that needs changed.

Pick one habit to work on changing. With , once he could pick up the TV

remote, I'd tell him to try to change a channel. I could just watch him

hesitate, see it in his face, the thoughts, the effort; I'd wait 30 sec and say

ok I'd do it, we'll try again later. And that's how we proceeded with that, I'd

say try, then wait.... Just the " effort " , that mental push he would try to give

himself counted as trying. And eventually one day he did it!

didn't want to talk about his OCD either. Sometimes with those on the

spectrum of autism, they just can't express what exactly they are feeling. So

it might be that, or it could be OCD won't let her say anything. So I did the

talking about OCD, whether he heard me or not, lol.

Can't recall, have you had a chance to read any parent books about having a

child with OCD? I think once you grasp how the therapy should work, how to

treat OCD, that you should be able to come up with a way or two to work on

things, whether you label it OCD or not.

And medication could be a great help with anxiety or just " relaxing " OCD a bit

so she is less rigid and can work easier on changing " behavior. "

Quick thoughts, hang in there!

>

>

> Thank you all for your replies. I agree with you about feeding the OCD. I

dont know how else to survive at this point. I have to tell you, my daughter

does not do ANYTHING for herself- no independent skills and everything from the

smallest thing (turning on the tv, putting a DVD in, sitting a certain place,

getting in the car) involves me and her autism on top of the OCD lends extreme

rigidity to

[Guest guest]

Thank you so much for your input. I just ordered a couple of the recommended

books so hopefully that will help. I still have not had a reply about any

therapists, though. We live in Huntington Beach, CA. She has a BCBA that comes

into the home every other week but that is not helping at this point. She is on

Metadate CD for ADHD and Risperdal for the rigidity. We have tried zoloft and

celexa, tenex, ativan, guanficine. Dont know where to go from here.... Thanks

again!

To:

From: @...

Date: Mon, 9 Jul 2012 22:58:50 +0000

Subject: Re: new to group- help, so discouraged!

Hi , independent skills can be difficult for those with autism.

However things like turning on the TV, the DVD and other you mention all sound

like OCD, those skills aren't lacking with autism. The rigidness can go with

both.

As I may have said before, my son had a " touching " problem with OCD where he

could get stuck feeling of something he touched or repeating things, etc. So he

avoided. He also wouldn't pick up a TV remote to change the channel, as he knew

he may get stuck touching it for minutes or hours until it felt " right " so he'd

avoid doing it. Once we got past all the " touching " issues (most went away with

inositol powder over time, tho we did work on things too) and he could pick up

the TV remote, he couldn't change a channel; might get stuck just scrolling

through/repeating. So yep, I changed the channels, turned the TV on/off, all

that too. We were working on other OC behaviors, but I'd remind him, often,

we're gonna work on this stuff at some point!

Sooo..tho your daughter doesn't recognize some things as OCD, or won't admit it,

she sounds like maybe she has a feeling something bad will happen if she does

this/that or doesn't sit in her chair (or sits anywhere else), and thus avoids

it. So you can still work on this from a " behavioral " standpoint, if she

doesn't get it as OCD, tell her it's a habit or behavior that needs changed.

Pick one habit to work on changing. With , once he could pick up the TV

remote, I'd tell him to try to change a channel. I could just watch him

hesitate, see it in his face, the thoughts, the effort; I'd wait 30 sec and say

ok I'd do it, we'll try again later. And that's how we proceeded with that, I'd

say try, then wait.... Just the " effort " , that mental push he would try to give

himself counted as trying. And eventually one day he did it!

didn't want to talk about his OCD either. Sometimes with those on the

spectrum of autism, they just can't express what exactly they are feeling. So

it might be that, or it could be OCD won't let her say anything. So I did the

talking about OCD, whether he heard me or not, lol.

Can't recall, have you had a chance to read any parent books about having a

child with OCD? I think once you grasp how the therapy should work, how to

treat OCD, that you should be able to come up with a way or two to work on

things, whether you label it OCD or not.

And medication could be a great help with anxiety or just " relaxing " OCD a bit

so she is less rigid and can work easier on changing " behavior. "

Quick thoughts, hang in there!

>

>

> Thank you all for your replies. I agree with you about feeding the OCD. I

dont know how else to survive at this point. I have to tell you, my daughter

does not do ANYTHING for herself- no independent skills and everything from the

smallest thing (turning on the tv, putting a DVD in, sitting a certain place,

getting in the car) involves me and her autism on top of the OCD lends extreme

rigidity to

[Guest guest]

Hi ,

Wanted to add my welcome to the rest! You have already had some good replies to

your posts, thought I'd add some thoughts, and perhaps my empathy.

Re finding a therapist, you might make a post with " therapists in Orange County,

CA " , in the subject line, so it draws attention of anyone out there in this

area. Have you already checked the ocfoundation website? Another avenue might

be local support groups for MH, often other parents know names, or community

health centre.

Not sure what books others have suggested, but What to do when your brain gets

stuck, is really good for kids and has a workbook component too. Also, Up and

Down the Worry Hill. You can look at them online, amazon.com, and see what you

think. Tamar Chansky's, Freeing your child from OCD is really good for parents.

Information and really understanding how OCD works is your best defence.

Your daughter's profile and what you are dealing with right now, is very

familiar. Our son was 15 at severe onset, and we lived a good year of being

stuck in accommodation mode. It took us two years to sort out medication, so

that there was stability with this piece, and ONLY THEN could ERP therapy of any

kind really be approached.

We had bipolar considered, in our case it was due to high doses of ssri and

calmed down after medications were shifted. You might ask if cymbalta would be

a good choice, it is used for anxiety disorders, and is an snri, so targets more

than just serotonin and can be more balanced. Also, low doses are often what is

best with kids with this kind of profile, the case for ours - high doses were

big problem, with behavior too. Risperidal was problematic for ours also, but I

know it helps others. So individual, and not a fun process to find what works

best. You have my total empathy on this one.

Our son was not " on board " , and lacked " insight " , overvalued the thoughts etc.

While it's true that they need to get on board for treatment, you can change how

you respond, little by little.

Try talking with your daughter when she is calm, not stuck in an OCD thing. Ask

her what she thinks she could work on. If she says nothing, then you choose

what you think might be manageable. Start small and make it easy for both of

you, focus on the " attempt " to change whether successful or not. Be as concrete

as possible with the steps and have small rewards leading to a bigger reward for

all attempts. You might make a post about reward system for CBT, others in this

group have done this successfuly.

With OCD change usually happens slowly, but even a small change will show your

daughter she can have some power over the OCD. It also has a snowball effect as

each change breaks the chain of the OCD growth and slows it, and eventually can

extinguish it, in time. Focus also on externalizing the OCD, it is the bad

guy/bully. When you yell, yell at the OCD, tell it you hate it and want it to

stop trying to control your daughter. Hopefully she will join in. See if she

will give it a name.

Whether your daughter is on board or not, you can change your piece of it. It

is not easy, and you want to plan it and be clear what you are going to do, so

you can stay as calm as possible. In terms of behavior, this is critical, you

must be firm about boundaries, or you will find the boundaries keep pushing

further, as OCD will compel them to do things. I can't emphasize this enough,

esp if you are participating in rituals, you must work on slowly shifting this,

and on any behavior.

I would give my son a warning to stop yelling/rudeness/behavior, or else remove

himself or I would remove myself. If your daughter doesn't want you to remove

yourself this can work. If there is something else that matters to her you can

use that. Depending on her state though, you may need to say you are removing

yourself for a few minutes and then come back - serves you to allow you time to

collect yourself too. Ours overwhelmed easily, so leaving him to himself to

cope was not a good idea. But you are trying to make the point that you will

not stay and take abuse from your child, regardless of what they are dealing

with.

Otherwise, I would ask your doctor to look at the effects of the medications on

behavior. This was a big piece of it with ours, he/we became clear he had less

ability to moderate his behavior due to doses of medications. In our case, off

all medication there was OCD/anxiety, but behavior calmed right down, and our

son was able to tell us he felt the difference, and we then went to low dose

ssri, with more OCD/anxiety, but better impulse control.

You mentioned your Mum, and about the bus for school. I find it is impossible

for others who are not dealing with what you are, to have any practical

understanding of it. When it comes to family it hurts all the more to feel they

are simplifying the whole thing. For them the answer looks straight forward,

logical, but as you well know, OCD is anything but. I learned to forgive others

before they even opened their mouths, and to not expect understanding on a

practical level. I did not generally find it helpful to share the challenges

with them.

Trust your own gut on these things, you know your child and your situation best.

Often there are no answers, or no ideal ones, and you just have to try things

and see how they work out, and then try again. Sometimes you think there is no

way something is possible, and they surprise you. Other times you have to

nudge/push knowing that the anxiety will always tell them they can't, but once

they get there it's ok. Other times you are just " stuck " not moving.... All

part of life with OCD.

Your best defense is information and truly understanding OCD. While ideally you

have a good therapist on board to help you, many do not. It is possible to move

in a direction toward managagement of OCD, once you find your way of shifting

your piece of it. Slowly and with a plan is best.

Keep asking parents here what to do in specific situations, one thing at a time,

and it will shift. The parents here are a great resource for this practical

information as well as support! Hang in there, it can get better, but it will

take some time.

Warmly,

Barb

Canada

Son 21, OCD, PDD-NOS/autism spectrum

>

> >

>

> >

>

> > Thank you all for your replies. I agree with you about feeding the OCD. I

dont know how else to survive at this point. I have to tell you, my daughter

does not do ANYTHING for herself- no independent skills and everything from the

smallest thing (turning on the tv, putting a DVD in, sitting a certain place,

getting in the car) involves me and her autism on top of the OCD lends extreme

rigidity to

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Barb

Thank you so much for your thoughtful reply And to all the others who have

replied as well. I just feel overwhelmed by all that I need to do to battle

this for my daughter, but we have already faced so many battles (a feeding tube

due to severe feeding problems, extensive physical therapies because of so many

gross motor delays And all the aba for autism). I just dont seem to get anywhere

so far with the ocd. But your advice is very helpful. My reaction to her

rituals definately sets the tone. Thanks again. Your advice has really

encouraged me.

T-Mobile. America’s First Nationwide 4G Network

----- Reply message -----

To: < >

Subject: Re: new to group- help, so discouraged!

Date: Thu, Jul 12, 2012 10:17 am

Hi ,

Wanted to add my welcome to the rest! You have already had some good replies to

your posts, thought I'd add some thoughts, and perhaps my empathy.

Re finding a therapist, you might make a post with " therapists in Orange County,

CA " , in the subject line, so it draws attention of anyone out there in this

area. Have you already checked the ocfoundation website? Another avenue might

be local support groups for MH, often other parents know names, or community

health centre.

Not sure what books others have suggested, but What to do when your brain gets

stuck, is really good for kids and has a workbook component too. Also, Up and

Down the Worry Hill. You can look at them online, amazon.com, and see what you

think. Tamar Chansky's, Freeing your child from OCD is really good for parents.

Information and really understanding how OCD works is your best defence.

Your daughter's profile and what you are dealing with right now, is very

familiar. Our son was 15 at severe onset, and we lived a good year of being

stuck in accommodation mode. It took us two years to sort out medication, so

that there was stability with this piece, and ONLY THEN could ERP therapy of any

kind really be approached.

We had bipolar considered, in our case it was due to high doses of ssri and

calmed down after medications were shifted. You might ask if cymbalta would be

a good choice, it is used for anxiety disorders, and is an snri, so targets more

than just serotonin and can be more balanced. Also, low doses are often what is

best with kids with this kind of profile, the case for ours - high doses were

big problem, with behavior too. Risperidal was problematic for ours also, but I

know it helps others. So individual, and not a fun process to find what works

best. You have my total empathy on this one.

Our son was not " on board " , and lacked " insight " , overvalued the thoughts etc.

While it's true that they need to get on board for treatment, you can change how

you respond, little by little.

Try talking with your daughter when she is calm, not stuck in an OCD thing. Ask

her what she thinks she could work on. If she says nothing, then you choose

what you think might be manageable. Start small and make it easy for both of

you, focus on the " attempt " to change whether successful or not. Be as concrete

as possible with the steps and have small rewards leading to a bigger reward for

all attempts. You might make a post about reward system for CBT, others in this

group have done this successfuly.

With OCD change usually happens slowly, but even a small change will show your

daughter she can have some power over the OCD. It also has a snowball effect as

each change breaks the chain of the OCD growth and slows it, and eventually can

extinguish it, in time. Focus also on externalizing the OCD, it is the bad

guy/bully. When you yell, yell at the OCD, tell it you hate it and want it to

stop trying to control your daughter. Hopefully she will join in. See if she

will give it a name.

Whether your daughter is on board or not, you can change your piece of it. It

is not easy, and you want to plan it and be clear what you are going to do, so

you can stay as calm as possible. In terms of behavior, this is critical, you

must be firm about boundaries, or you will find the boundaries keep pushing

further, as OCD will compel them to do things. I can't emphasize this enough,

esp if you are participating in rituals, you must work on slowly shifting this,

and on any behavior.

I would give my son a warning to stop yelling/rudeness/behavior, or else remove

himself or I would remove myself. If your daughter doesn't want you to remove

yourself this can work. If there is something else that matters to her you can

use that. Depending on her state though, you may need to say you are removing

yourself for a few minutes and then come back - serves you to allow you time to

collect yourself too. Ours overwhelmed easily, so leaving him to himself to

cope was not a good idea. But you are trying to make the point that you will

not stay and take abuse from your child, regardless of what they are dealing

with.

Otherwise, I would ask your doctor to look at the effects of the medications on

behavior. This was a big piece of it with ours, he/we became clear he had less

ability to moderate his behavior due to doses of medications. In our case, off

all medication there was OCD/anxiety, but behavior calmed right down, and our

son was able to tell us he felt the difference, and we then went to low dose

ssri, with more OCD/anxiety, but better impulse control.

You mentioned your Mum, and about the bus for school. I find it is impossible

for others who are not dealing with what you are, to have any practical

understanding of it. When it comes to family it hurts all the more to feel they

are simplifying the whole thing. For them the answer looks straight forward,

logical, but as you well know, OCD is anything but. I learned to forgive others

before they even opened their mouths, and to not expect understanding on a

practical level. I did not generally find it helpful to share the challenges

with them.

Trust your own gut on these things, you know your child and your situation best.

Often there are no answers, or no ideal ones, and you just have to try things

and see how they work out, and then try again. Sometimes you think there is no

way something is possible, and they surprise you. Other times you have to

nudge/push knowing that the anxiety will always tell them they can't, but once

they get there it's ok. Other times you are just " stuck " not moving.... All

part of life with OCD.

Your best defense is information and truly understanding OCD. While ideally you

have a good therapist on board to help you, many do not. It is possible to move

in a direction toward managagement of OCD, once you find your way of shifting

your piece of it. Slowly and with a plan is best.

Keep asking parents here what to do in specific situations, one thing at a time,

and it will shift. The parents here are a great resource for this practical

information as well as support! Hang in there, it can get better, but it will

take some time.

Warmly,

Barb

Canada

Son 21, OCD, PDD-NOS/autism spectrum

>

> >

>

> >

>

> > Thank you all for your replies. I agree with you about feeding the OCD. I

dont know how else to survive at this point. I have to tell you, my daughter

does not do ANYTHING for herself- no independent skills and everything from the

smallest thing (turning on the tv, putting a DVD in, sitting a certain place,

getting in the car) involves me and her autism on top of the OCD lends extreme

rigidity to

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

>

[Guest guest]

Wow , you have been through so much! But realize how strong you are - you

can do this too. We are behind you!

Rhonda

Re: Re: new to group- help, so discouraged!

Barb

Thank you so much for your thoughtful reply And to all the others who have

replied as well. I just feel overwhelmed by all that I need to do to battle this

for my daughter, but we have already faced so many battles (a feeding tube due

to severe feeding problems, extensive physical therapies because of so many

gross motor delays And all the aba for autism). I just dont seem to get anywhere

so far with the ocd. But your advice is very helpful. My reaction to her rituals

definately sets the tone. Thanks again. Your advice has really encouraged me.

T-Mobile. America’s First Nationwide 4G Network