Re: ASK Gail - REPLY to Sandy

March 3, 2011

Dear Sandy,

First, I want to acknowledge what a tough situation this has to be for you, your

son, and your family. With appropriate treatment, however, I believe things will

improve. Second, without my knowing all the details of your son's situation,

it's very difficult to know exactly what will help. But I do have a number of

ideas and suggestions and want to share them with you.

Although you did not ask me about your son's clinical treatment, I just wanted

to mention a couple things. First, I am NOT a physician, but I do know that

medication can be tricky, especially with younger children (you might want to

ask one of the clinicians on this listserv for his or her opinion about the

medications your son is receiving). But in general, it's always important to

monitor medication carefully. Also, I don't know the details about the CBT your

son is receiving or the length of time he's been involved in it. But I did want

to make you aware of a newer CBT program that has been designed specifically for

very young children (ages 5-8). Written by Freeman and Abbe Marrs

, the program is called Family Based Treatment for Young Children with

OCD. It includes a therapist's guide and a workbook and can be found on

Amazon.com. I mention this program not because I think your son's current CBT

program is ineffective; again, I have no details about his program. But because

he is very young, and this program is tailored to meet the needs of very young

children, I thought I would mention it. It also is a program in which parents

are extremely involved. In addition, it has received, and it appears it will

continue to receive (as suggested by some studies currently in progress)

empirical or clinical support. Moreover, there is some research to suggest that

CBT may be more effective for young people when families are involved in

therapy. These are just some ideas for you to keep in mind...

As for your son's school situation...what jumped out at me, most prominently,

was that it appeared as if the school professional who observed your son was

unfamiliar with OCD. And when people don't understand OCD, how it manifests, and

its neurobiological underpinnings, they tend to rely on more traditional

explanations for an individual's behavior. It seems to me that the school

behavioralist responded as if your son's behavior is something over which he has

complete control--something he can just will to do or will not to do. But we

know that's just not the case with OCD. It's a little like telling someone to

just stop a wheezing attack at will. And from what you indicated in your e-mail,

it appears that your son was in the throes of an OCD attack with regard to the

germs, etc. It's really almost as if he was in a state of panic. And you are

absolutely correct in that his hurting you is not an option. But it's easy to

understand how no consequences--positive or negative--would be effective when he

was feeling so frantic. Indeed, many of the traditional behavior modification

techniques used by educators and parents are ineffective, at times, with OCD.

I would suggest that your son's teacher, the behavioralist, and any other school

personnel involved in your son's education learn about OCD. There are a number

of books written about OCD in general, but very little is available specifically

for school personnel (at the end of this response, I will mention a new book on

OCD for educators that is coming out very soon). I would like to refer you,

however, to an absolutely wonderful website: the website for OCD Chicago. On

this website (www.ocdchicago.org), there is a separate section called " OCD

Education Station. " It is extremely thorough and provides school personnel with

excellent information about childhood OCD and what they can do to help students

with OCD. I would strongly encourage the school personnel involved in your son's

education (and all school personnel, for that matter) to access the information

on that site ASAP. I think understanding is sometimes half the battle when it

comes to OCD. Film also can be very effective in helping people understand OCD.

And there is a wonderful film called " The Touching Tree, " which is 40-minute

movie about a young boy with OCD. It is available at Amazon.com., and, in fact,

can be downloaded for immediate use at a minimal cost. (I promise I have no

stock in Amazon.com!!) Most of the proceeds for this film go to the

International OCD Foundation for OCD research.

I also don't know how or to what extent the OCD is interfering with your son's

school functioning. If a behavioralist came in to observe him, I suspect there

has been a considerable level of concern. If the OCD is, indeed, interfering, I

would strongly recommend that you ask school personnel to consider some services

for your son under Section 504 of the Rehabilitation Act of 1973 (Section 504).

It may be that your son needs some accommodations or modifications in the school

setting to help him function in school. You would need documentation of his OCD

from his doctor/therapist, and if it is interfering with his learning, he should

be eligible for what is called a Section 504 plan. Again, I don't know how or

the extent to which his contamination fears are affecting his school

performance. But let's say, for example, that your son refuses to do some work

because it entails using classroom materials that have been touched (and

therefore, " contaminated, " ) by other students. It would be a perfectly

reasonable accommodation for him to have his own set of materials that others

have not touched. Or let's say he fears he'll get some germs by bumping into

other students in crowded hallways while going to lunch. A very reasonable

accommodation in this situation would be to allow him to leave class a few

minutes early to go to the lunch room. These accommodations could stay in place

as long as he needed them--and no longer. So as he improved with CBT and/or

medication and overcame his contamination fears, the supports would be faded

out.

If your son's situation at school requires more attention, he might need special

education and related services that can be obtained under IDEA--a federal law

governing special education and related services in public schools. An

evaluation would need to be conducted, and if your son were found eligible for

special education services, an Individualized Education Plan, or IEP would be

developed. It might even be that a functional behavior analysis (FBA) would need

to be conducted to determine when and in what situations his challenging

behavior occurs. A positive behavior intervention plan then could be developed

to provide your son the supports and behavioral interventions he might need to

help him function in school.

A final suggestion is that you talk with your son's CBT therapist to see if

he/she can do some exposures with your son in the school environment. Or perhaps

he or she could work closely with teachers and other school personnel to set up

a plan to help him with exposures at school under his or her supervision.

I did want to let you know that I have just finished writing a book on OCD in

children and adolescents for school personnel. I tell you this not for monetary

reasons, but because I have written it specifically to educate school personnel

about what childhood OCD is, how it affects kids with OCD in school, and how

educators can help. If you are interested, this book will be available in a few

weeks through www.ocdhandbook.com -- a website that is going to launch very soon

(hopefully within the next week).

Sandy, I wish you, your son, and your family all my best. And I hope some of

these ideas will be helpful as you continue on the road to his recovery.

Take good care,

Gail

>

> My 7-yr old son was out of school for 2 months at the suggestion of his

psychiatrist with purposes of stabilizing meds and removing him from the extreme

anxiety environment. He's on celexa and zyprexa. Has been receiving

cbt/exposure response and has not been willing to listen. He still has his

contamination thoughts and rituals. The school behavioralist observed him today

and told me that he is not a germaphobic - and that it was totally a control

issue - inferring that ocd was not the issue. She told me to ignore his pleas

(as we

March 4, 2011

THANK YOU for forwarding to Gail. Wow. Thank you Gail for your time!

Despite my son's therapist sending a letter to the school advising that she did

not think the gloves were the right answer, the school forced him to wear the

gloves today anyway. It's almost like they are penalizing him for his behavior

of not wanting to touch the paper/(everything). This is an illness and they are

seeing it as a behavioral control issue. My son's thoughts are that the gloves

are contaminated and they won't let him take them off and now he says the other

kids are making fun of him. Just wanted to leave a quick entry here. Could go

on an on!

Thanks again for the great information. Sincerely, Sandy

> >

> > My 7-yr old son was out of school for 2 months at the suggestion of his

psychiatrist with purposes of stabilizing meds and removing him from the extreme

anxiety environment. He's on celexa and zyprexa. Has been receiving

cbt/exposure response and has not been willing to listen. He still has his

contamination thoughts and rituals. The school behavioralist observed him today

and told me that he is not a germaphobic - and that it was totally a control

issue - inferring that ocd was not the issue. She told me to ignore his pleas

(as we

>

March 4, 2011

I am stunned that the people at school dared to force your son to wear gloves.

I would put a stop to that IMMEDIATELY. When my daughter was diagnosed at

seven, the psychiatrist we saw said that under no circumstances should the

counselor at school work with her on her OCD. He said that sometimes huge

mistakes are made and that only people who are qualified should treat her. You

have many legal rights as does your child. Do not let the school bully you or

your son. Kelley in NV

Re: ASK Gail - REPLY to Sandy

THANK YOU for forwarding to Gail. Wow. Thank you Gail for your time!

Despite my son's therapist sending a letter to the school advising that she did

not think the gloves were the right answer, the school forced him to wear the

gloves today anyway.

March 4, 2011

- I am very disappointed with the school as to their handling and refusal

to set up a plan to have in place for when he did return to school (he was out 2

months). I am wondering if I made a mistake in putting him back in school this

week especially since the school was evasive as to their resources and

unwillingness to discuss beforehand. I realize now that I have no choice but to

go as high up as I can in the system to ensure the right help is able to be

implemented by the school or they will have to work with me to find another

school that is able to handle and offer the right help without. This has been

one long struggle and I am sure there is still a long road to go down before my

son is able to want to manage his OCD. Still working on the right dosages of

meds and then hopeful that he will be more responsive to CBT/ERP. How is your

daughter doing now? With sincerety, Sandy

>

> I am stunned that the people at school dared to force your son to wear gloves.

I would put a stop to that IMMEDIATELY. When my daughter was diagnosed at

seven, the psychiatrist we saw said that under no circumstances should the

counselor at school work with her on her OCD. He said that sometimes huge

mistakes are made and that only people who are qualified should treat her. You

have many legal rights as does your child. Do not let the school bully you or

your son. Kelley in NV

>

> >>

> THANK YOU for forwarding to Gail. Wow. Thank you Gail for your time!

Despite my son's therapist sending a letter to the school advising that she did

not think the gloves were the right answer, the school forced him to wear the

gloves today anyway.

>

March 4, 2011

Sandy, we had to go to the Director of special ed for my district to find the

help my dd needed for school. We didn't see any progress until she got involved.

It is so frustrating when they look at the child's illness as being a behavior

problem instead of an illness. That happened to my dd too. It can be such a long

process to get the meds right. I feel for you as I know what the struggle is

like. Did your son receive homebound services during the time he was out of

school? If so, are you able to keep some of those onboard in case he still needs

them? My dd kept homebound services for 3 years. It was written into her plan

that she could receive them regardless of her attendance. I hope things improve

soon! Stormy

________________________________

To:

Sent: Fri, March 4, 2011 8:53:54 PM

Subject: Re: ASK Gail - REPLY to Sandy

I realize now that I have no choice but to go as high up as I can in the system

to ensure the right help is able to be implemented by the school or they will

have to work with me to find another school that is able to handle and offer the

right help without. This has been one long struggle and I am sure there is

still a long road to go down before my son is able to want to manage his OCD.

Still working on the right dosages of meds and then hopeful that he will be more

responsive to CBT/ERP.

-

March 4, 2011

My daughter is now seventeen and a senior in high school. With the exception of

a small handful of teachers, we have had very good luck in the school system.

The principals, counselors, and teachers were very good about asking me what was

going on and how best to handle and my other daughter, Hannah, who also

has OCD. When issues about bathrooms, handwashing, and eating came up, school

counselors informed me that teachers WOULD honor my requests and meet my

childrens' needs or they would be in violation of their rights. I have had

teachers forward materials to me for preview to make sure the materials would

not be disturbing to my girls and email me to ask me if I thought films or

movies were appropriate for them. When was in the first grade and was

afraid to use the bathroom, I offered to come to school each day and take her

myself. Her teacher said that she would be more than happy to take and

they became bathroom buddies. It was never an issue. When was your son's

age, I actually attended school with her with the permission of her doctors (a

psychiatrist and a psychologist) and the school administration. was too

frightened to be in school alone and we were afraid she would stop going

altogether. I was present in her classroom and helped with the other students.

I was in the lunchroom at lunchtime because was especially afraid of the

lunchroom. It was noisy and she believed that her food might be poisoned. I

also helped with opening up packaging for the other kids. was very good

about having me there as was her wonderful teacher. never came to me to

get out of anything and if she needed related to her OCD, I was there. That was

the year she started medication and once the medication kicked in, I was able to

stay home. I was with her from November until the end of May when school ended.

I never had to attend school with her again. She was very close to a couple of

her teachers and on days she was reluctant to go to school, I was able to leave

her with one of them and they would help her by giving her a task to do before

school started. We still have bad times--senior year is very hard and she is

stressed much of the time. She has been sick with colds and such and being sick

always makes her worse, but for the most part, I would say she is doing okay.

She is not a problem in school at all and while she is not an " A " student, she

works hard. I think that once she graduates, she will be more calm. Last year

was less stressful for her and she was better--I am looking forward to seeing

that girl again. She still takes medication and probably always will. She

takes 300 mg. of Luvox daily along with Geodon to help her mood and Clonidine to

help her sleep. I hope this helps. My other daughter, Hannah, is twenty and

she is doing very well. We struggled for many years with her and I can really

see how far she has come. Don't give up hope--it does get better! Kelley in NV

Re: ASK Gail - REPLY to Sandy

- I am very disappointed with the school as to their handling and refusal

to set up a plan to have in place for when he did return to school (he was out 2

months). ... How is your daughter doing now? With sincerety, Sandy

March 4, 2011

This really makes me very, very concerned for your son. How dare they think

they know better than the therapist. There are steps you can take to stop

this immediately.

Did the therapist make an emphatic statement in the letter, or was

there wiggle room for the school to interpret it as a suggestion? You

may want to ask the therapist for a stronger statement. You can send a

letter as well, stating that they are causing emotional distress. I would

consider keeping your son at home and asking for homeschooling until they

agree to stop this.

Fay

>

March 4, 2011

Echoing 's reply, NOT ACCEPTABLE! I would not send your son back to this

school until this is resolved, not sure I could return to this school at all.

Your son should not be subjected to this any further.

Surely your doctor can help you with securing appropriate accommodations. Is

there a mental health advocate at the school board you can appeal to I wonder?

That would be my first phone call Monday morning.

I see Dr. has given you a wonderful reply with resources, hopefully this

will help too.

Hang in there. Do be sure to tell your son that what the school has done is not

right, that they do not understand and need to learn about OCD.

Hugs to you!

Barb

> >

> > I am stunned that the people at school dared to force your son to wear

gloves. I would put a stop to that IMMEDIATELY. When my daughter was diagnosed

at seven, the psychiatrist we saw said that under no circumstances should the

counselor at school work with her on her OCD. He said that sometimes huge

mistakes are made and that only people who are qualified should treat her. You

have many legal rights as does your child. Do not let the school bully you or

your son. Kelley in NV

> >

> > >>

March 5, 2011

Wow Sandy, can he go on homebound again, was it hard to get it before? I would,

if you haven't, call the school system Special Ed director. And then, if need,

call the state director.

I did that once. I was disagreeing on some point with the school. And was a

bit ticked off. So I wrote up an email to send to the state spec ed director

but re-thought the next day (I always delay in sending anything until I've

calmed down) and sent it to the district director first. Which she was glad of.

She did answer/explain some things in her reply but couldn't one thing. So I

emailed - with her blessing, but that wouldn't have stopped me - the state spec

ed director. Waited a week, then called her. Mentioned my email, so she looked

at it then and we discussed it on the phone, she was very nice. And, yes, I WAS

RIGHT! So passed it on to the local director, etc. What helped me always when

dealing with issues I felt the school didn't handle appropriately is to think of

ALL the students being treated unfairly and that I was helping them and my son,

and making sure these school personnel got trained/corrected.

I feel your state spec ed director will certainly side with you that the school

is mishandling your son's disability and needs some correction, training! But

if you haven't yet talked with the local director, start there. They can't fix

things if they don't know what's going on. Same with the state, they need to

know school district is mishandling things.

>

> THANK YOU for forwarding to Gail. Wow. Thank you Gail for your time!

Despite my son's therapist sending a letter to the school advising that she did

not think the gloves were the right answer, the

March 5, 2011

Adding to what I said before, been thinking. Write an email to the school

personnel you're working with (their spec ed person, any counselor, etc.) and

let them know you disagree with how they are handling your son's

situation/disability, feel they do not understand how to accommodate OCD in the

school environment. And " cc " the principal and the school district spec ed

director. Let them know you would like a meeting set up ASAP to discuss. This

starts your " paper trail. " Of course you have to be ready to state your case at

the meeting, maybe get therapist there or have letter from therapist, ideas on

how to better accommodate (use Gail info and the OCD Chicago site info she

mentioned), etc.

Hmmm...you could go ahead and " cc " the state special ed director. But I was

thinking if after the meeting nothing seemed better, then write state and " cc "

the local spec ed director. Some schools are always protecting their personnel

so will never admit they are in the wrong, and will be on the defense the whole

time, don't know which type you'll be dealing with. But when you go to the

state, the local people will end up with a lot of paperwork to do and they hate

that (per our local spec ed director that time).

And always try to put in somewhere that this is all about helping your son be

successful in school, having a supportive school environment, and working as a

team to help him succeed and get his education while coping with his mental

illness (or disability, whatever term you'd like to use).

Just some more quick thoughts this Saturday!

>

> Wow Sandy, can he go on homebound again, was it hard to get it before? I

would, if you haven't, call the school system Special Ed director. And then, if

need, call the state director.

>

March 5, 2011

Thank you everyone for your input!

- A meeting is scheduled for this Monday (was scheduled last week before

the glove enforcement.) Now I am feeling totally stressed (dealing with other

issues beside school and ocd - aren't we all). Anyway, I am feeling overwhelmed

and I will tell you right now that there is an " attitude " with almost every

person that I have dealt with at the school. They definitely all do stick up

for each other - especially the case manager who has been hard to pin down and

has not been helpful. I did call the director of special services before my son

returned to school to tell her that I needed to set up a plan to help my son

transition back into the classroom setting and to ensure that the school had the

right resources. She told me that she would have the case manager contact me

about that. The case manager did contact me but was vague and basically said

that nothing could be decided until he returned to school.

Unfortunately, most of my dealings have only been verbal and I am kicking myself

now for not backing up every conversation and issue in writing. First, we had

an issue with no aide being trained on the bus to use epi-pen in case of

emergency. The principal and the case manager were all checking into it.

Nothing was ever resolved and I kind of let the ball drop because my son had

issues with riding on the bus with the other kids. Secondly, his iep called for

social skills program and I sat down the first day of school and introduced

myself to the social worker and talked about my son and his social skills

program. I kept asking my son about the social skills and he knew nothing about

it. Winds up he was never placed in the social skills program (according to his

case manager) because the iep was written up social skills " training " and they

have no such thing.

I guess I will just have to sit down some time tomorrow and write out all of my

points, issues and make an outline and be sure that I check off each point. I

always think of things that I should have said after the fact. Praying for

strength and patience and a beneficial outcome for my son! - Sandy

>

> Adding to what I said before, been thinking. Write an email to the school

personnel >

>

March 5, 2011

Sandy, I found I did better if I had a list in from of me to remind me what I

wanted to cover. So, like, " social skills " would be on there. And I put down

anything I wanted to make sure to say or ask for.

And if at the meeting they say again they have no such thing, then write that by

it. If on another topic they say a yes or no, write by that.... Then you can

have info for your paper trail. You could do a follow-up letter to them with

all that was agreed on, all they said they couldn't do & why (no social skills

training program), etc. So then that is in writing (don't trust all they

actually write in the IEP for detail). And then all THIS can go in your info to

the district and/or state.

That social skills issue with the " program vs training " terminology...so stupid.

And I don't often use that word.

A lot of ours was verbal too, but when things are going okay, tend not to do a

paper trail. But for issues that arise with disagreement, like I had, I did

follow up emails on what was said. Oh I had the middle school psychologist

upset with me, because it was something she'd said I felt she was wrong about,

and that prompted all my writing and questions. Believe me, since I WAS right,

they wouldn't make that error with any other student. For me it was about

whether he could qualify for an IEP or not since his grades were okay; well, his

grades were okay due to all the accommodations we were using in his 504 plan,

she more or less said that didn't matter....duh! So my issue with her. And that

conversation was prompted by my wanting him tested for any learning disability

but wasn't pursuing an IEP/spec ed services, they weren't sure they could test

him if I wasn't.... I was happy with our 504 Plan and wasn't interested in an

IEP unless testing showed an LD and he could use one. That's the short story.

I also had OCD info there, what I had put together, copying/pasting from info I

gathered into a couple pages. And I made copies to hand out. Highlighted on

each copy the main things I wanted them to know. And went over it all in the

meeting. Didn't trust them to read it later. But was trying to educate about

OCD, with some specific points that related to .

Oh, that first year of OCD and all the school issues starting and the meetings!

I had researched and studied all the 504 and IEP rules and " school and OCD "

stuff. I cried at one meeting, at least (they had to bring me a box of

tissues). I found I did better with email and phone calls than face-to-face.

But as middle school went by and more meetings and I was sure in my knowledge, I

did better. Really by the time middle school years were ending I felt I could

hire out as a parent advocate! And it varied year to year, some people were so

helpful, others not. And you're with the " not " people now. But hopefully that

will change, they just don't " get OCD. "

>

> Thank you everyone for your input!

> - A meeting is scheduled for this Monday (was scheduled last week before

the glove enforcement.) Now I am feeling totally stressed (dealing with other

issues beside school and ocd - aren't we all). Anyway, I am feeling overwhelmed

and I will tell you right now that there is an " attitude " with almost every

person that I have dealt

March 5, 2011

Elemntary schools I have found are the most ill equipped to handle psychological

issues. I was extremely impressed witht he middle school team my son had and I

couldn't have suggested anything more to them. I guess the incidence of mental

health issues goes up as kids age and so the upper grade schools are better

versed? Ultimately, my son needed a different environment. The point I'm

trying to make is that it's going to be tough dealing with those who " don't get

it " , but it's not impossible. By the time my son finished elementary school, I

was editing the IEP and providing homework accomodations ect on my own.

It is not appropriate for them to meet your son's needs after the point at which

he requires intervention - they're setting him up for failure and causing undue

harm. You have a diagnosis, they haven't been able to refute it with an equally

qualified practitioner, they have to then heed the direction of your son's

practitioners even if that means they must hire someone or yours to train school

personnel. They must consult your private ones to provide consistency and

efficiency in planning interventions.

Your list making idea is just right. When you speak with them use strong words

(such as you are causing him undue diress by not planning for his needs ahead of

time) and use words that let them know that you understand your rights. Make

sure that you understand how they will meet his needs and make sure that you

pointedly ask them who is ultimately responsible for the implementation of his

IEP so that you can communicate issues to that one person (case manager usually)

as needed. You aren't there to make enemies and it would be better if you

didn't have to, but they need to know that you mean business and you know what

to ask for.

Practically speaking, we did graduated returns to school when my son's anxiety

prevented him from attending. We had a lot of homework accommodations and we

had a classroom aide at all times for him.

I really hope it works out. I hate the thought of your son going through what

mine did.

Bonnie

> >

> > Adding to what I said before, been thinking. Write an email to the school

personnel >

> >

>

March 5, 2011

It is illegal for the school to not follow the IEP. If it states in there that

social skills training will take place, they need to honor it or they are

breaking the law. You and your son have more rights than the school does.

There are advocates who can help you at the meetings. These advocates (I don't

know where you get one but I'm sure someone here does) know what to ask for and

can tell when smoke is being blown. Good luck. Kelley in NV

Re: ASK Gail - REPLY to Sandy

... I kept asking my son about the social skills and he knew nothing about it.

Winds up he was never placed in the social skills program (according to his case

manager) because the iep was written up social skills " training " and they have

no such thing.

March 5, 2011

This was not true in my dd's district. My dd was treated as a truant, delinquent

person with bad character in her high school. I think that though the incidence

of mental illness goes up so do badly behaved kids who don't want to be at

school that do not have a mental illness. Even with my pdoc letters her school

chose to believe what they wanted about my dd which could not be further from

the truth. They exacerbated her illnesses in many ways. Her school really

hindered her recovery as well as her high success. Stormy

________________________________

To:

Sent: Sat, March 5, 2011 2:08:52 PM

Subject: Re: ASK Gail - REPLY to Sandy

Elemntary schools I have found are the most ill equipped to handle psychological

issues. I was extremely impressed witht he middle school team my son had and I

couldn't have suggested anything more to them. I guess the incidence of mental

health issues goes up as kids age and so the upper grade schools are better

versed?

March 5, 2011

Geez I sure could have used you to help me deal with stuff at school with

our kid. I just didn't have the wherewithall to fight what felt like a losing

battle anyway. I don't think I knew the proper channels to use after hitting a

deadend at the school itself.

Guess I was saving all my energy to deal with our mental health system.....

You have some great ideas you should write them up and put them in our

files for next time, cuz we know there will be a next time...