Introduction

March 30, 2001

,

I'm nearly finished reading Dr. Chansky's book,

" Freeing Your Child from

Obsessive-Compulsive Disorder: A Powerful, Practical Program for Parents

of Children and Adolescents " .

It's excellent, even though I'm starting to realize that my

daughter is probably more Tourette's with some OCD... still learning lots

every day. :-)

-Marlys

At 11:48 AM 3/30/01 -0500, you wrote:

Also, does anyone have a suggested reading

list about OCD? I think

's case is relatively mild, but he is exhibiting a lot of

behavior

problems. I need to learn more and learn how to effectively deal with

him.

Thanks again.

(Durham, NC)

March 30, 2001

> Thanks for writing, Joni! And thanks to everyone else who has

responded.

>

> I've been trying to learn a lot in the past 1 1/2 days since

was

> diagnosed. I'm feeling a bit overwhelmed, but it's reassuring to

know

> that help is available and that there are many friends here with

whom to

> share experiences.

*** I know how you feel. I'm not sure if you saw my posts on the

ENFP list about OCD (that's a personality type list for those who

don't know - but I was a wreck. That's when I decided I needed a

support group because EVERYONE I know doesn't understand this thing.

Heck, I'm still trying to understand OCD. I've had to educate my

family members, friends, 's teachers, principal, even his

Special Ed teacher who thought he was 'daydreaming' too much! I

explained to her that OCD children often appear to be daydreaming

when in fact they are suppressing their urge to perform a ritual

(like hand-washing) or suppressing repetitive thoughts. Whew! It's

been very challenging for everyone- especially when my mother or

father tell him to 'just knock it off' or 'he needs a good

spanking.' They don't understand either.

>

> Joni, you hit on a question that has been puzzling me, too. It

seemed

> that we were with the psychiatrist such a short amount of time

before he

> decided that had OCD. There were no formal tests performed,

just

> questions about habits, attitudes, etc. had been seeing a

> psychologist at the same practice, so maybe the psychologist

suggested

> the diagnosis. Do the doctors usually perform any standard tests,

or is

> the diagnosis typically based on observed behaviors as reported by

> parents? It just seems strange that 20 minutes and $190 later, I

leave

> with a prescription and I didn't have a clue about what questions I

> should be asking.

***I asked my psychiatrist if he should perform the formal

psychiatric evaluations on or not - and since he had a Child

Study performed at school, his doctor said it was unnecessary unless

I insisted. He also said it was very expensive. I didn't feel it

was necessary because my mother-in-law has OCD. While I didn't have

a name for it 22 years ago when I was first married, my curiousity

about her led me to read up on this disorder about 10 years ago.

Bingo-- her symptoms were all there (door locking rituals at night

before bed, clicking her alarm clock off and on 100 times before she

felt sure it was on, checking the stove, iron, and other appliances,

violent rages, etc). Then, (now 17) developed ADHD when he

was 9yo with some OCD symptoms with it. By that time, I knew what

OCD was and when ie showed symptoms last year, further testing

wasn't necessary. Sometimes, I think parents can make the BEST

diagnosis' for their children because we know the family history and

the child so well. If you are unsure whether has OCD, start

reading as much as you can about it. There are several subtypes to

this disorder (hair pulling, eating disorders, depression, etc). I'm

currently reading a book called 'Obsessive-Compulsive Disorder, Help

for Children and Adolescents' by Mitzi Waltz. It's GREAT. It also

goes into everything you need to know about the IEP's at school and

your legal rights to a good education for your son. I picked this

book up at the public library by accident. I was looking for a book

the psychiatrist recommended: 'The Boy Who Couldn't Stop Washing.'

They are ordering it for me and it should come in soon. This is an

older book (written in the 70's) with outdated medication

recommendations, but our doctor said it has many good stories about

the different 'faces' of OCD.

>

> Joni, didn't you mention on the ENFP list that a trampoline really

> helped your son? I'd love to know more. (By the way, I've sent

several

> emails to your account. Did you receive any of them? I've

heard

> that has had a few server problems....)

*** Oooops! I haven't been checking my email. I'll do that

once I finish this letter! (sorry YES, the trampoline was

a lifesaver for this family with 3 very active sons! I bought it

when (now 19) was 12 or so. , 17- ADHD- well, if it

wasn't for the trampoline- I think I would have killed him by now!

LOL It's one of those big round ones-- and they're very safe.

Unlike the rectangle ones we had in our day, the round shape of these

new ones keep the kids in the CENTER of the trampoline no matter

where they jump-- they always land in the center. So, I have no

worries at all about them getting hurt. It was so used and worn out

by my older sons, when ie was around 3yo, we had to replace

everything on it except the frame. The initial $200 I spent on the

trampoline was the BEST money I ever spent. It's truly made my life

easier with 3 energetic boys. Plus, I get on there too and have a

BLAST! Great way to de-stress the whole family, f'sure!

Hang in there ! ((((Lots of hugs to you and yours))))

Joni

October 28, 2001

Welcome ,

What a caring Angel you are , requesting for information to assist

this 6 yr.old boy . Hope you find many answers to guide him in the

right direction . If an IEP has been done on him , what are the goals

needed for him ? Check what Joan and others from this list have

shared under Bookmarks and Files . There are great information that

have been posted . We have many SITES or information to share , but

once you mention which are needed the most would help , so that our

professional PARENTS from this list could assist your questions .

You've already mentioned he is nonverbal , so check out what I

mention above . Here are a few sites in the mean time to check out .

http://www.isn.net/~jypsy/autilink.jtm

http://www.bbbautism.com

http://www.autisms.org/Links.htm

Hmm, small town , sounds like the more you learn , you could start

providing some services . Many families would enjoy that in your

town . Also, try to find out if any resources are available in your

town ? You already have the best resource at your finger tips , the

internet . Do not hesitate to ask questions , many here are just

wonderful . I could vouch for that . Hope you find our list helpful .

Luck .

Irma, 13,DS/ASD.

> Hello My name is .

> I joined this list in hope of guidance.

> I am a para at our local grade school and this year an autistic boy

has

> joined our school.

> We live in a small town so we have no autistic programs available

so they

> just assigned me to him

> but have gave me no real guidance as how to teach him.

> He is a wonderful child. he is non verbal but is very bright. He is

6 years

> old.

> I know he has alot of potential but i have no idea where to even

start or

> look for information to help me.

> The school district is very unhelpful.

> Can anyone give me ideas where to even start.

> Thanks

>

October 28, 2001

Oops ! Sorry ,

Typed it too fast , correct website :

http://www.isn.net/~jypsy/autilink.htm

Irma, 13,DS/ASD.

October 28, 2001

If you go to the page to look at this group, under files you'll find a lot

of the websites that will help. (I have to confess, I haven't looked to see

what's there). I homeschool my son (who is Down Syndrome and PDD-NOS and 11

years old - but academically and socially and emotionally he's about like a 7 or

8 year old). The biggest thing is to break everything down into smaller

steps.....and I mean really small. Here's an example. I taught how to

wash his hands.

1. turn on cold water

2. turn on hot water

3. wet hands

4. turn over and wet bottom of hands

5. put soap on hands

6. rub hands together to wash hands

7. rinse hands

8. shake excess water off hands

9. turn off hot water

10. turn off cold water

11. get hand towel

12. dry hands

13. put towel back

What you do, after you break it down into smaller parts is to walk him through

the whole process with you doing everything. Then the next time, you do

everything except the last step, which he does. That's called reverse chaining.

You just keep letting him do more until he's doing it all. I used pictures with

when he wasn't verbal. There's a good site called dotolearn.com that has

pecs pictures that you can print off. I even made a strip of the steps needed

for to take a shower so he could do it himself. I would still have to be

in there though, or he'd pour all the shampoo into the water, shave the soap or

whatever else his mind could come up with.

Here are the sites that I have.

http://www.naspweb.org/pdf/BehInt2k.pdf

http://www.newhorizons.org/spneeds_meshman.html

http://specialeducation.org/

http://www.bbbautism.com/

http://www.jamesdmacdonald.com/misbehavior.htm

http://www.teacch.com/teacch_e.htm

http://www.autism-society.org/packages/packages.html

Loriann

Wife to Dewight

Mom to , 11 years, Down Syndrome, PDD-NOS and Celiac Disease.

, 2 years and Strong Willed

Both homeschooled.

October 28, 2001

Irma

Thanks for replying. I will check out those sites.

The bad thing is that their is an IEP but their are no goals

hmmm well their are but they read like , Work on being verbal, use pecs

(which we are doing)

and have him function as a " normal " 6 year old child.

I am not a professional but i would estimate that he functions at about 2

just going by

my experience as a mother.

His mother has not accepted that he is Autistic yet but that is

understandable,

The whole thing is that the mother and the school system neither one will

give in to the others wishes and i am put in the middle.

The mother wants him in the regular first grade room doing first grade work

and the school system doesnt want him there but has no choice at this

point . He is definetely not ready for first grade work but i understand

the mothers point and i try to break down the work as much as possible but

sometimes i am not sure exactly how to do it since the people over me wants

nothing to do with him hoping the mother will move him to another school.

He is great on the computer and does wonderfully at matching and tracing so

right now like on his Phonics papers i write the words and let him trace

them and then cut up a second paperand let him match the pictures. That way

we are doing similar to what the class is doing. But i know their is alot

more that i can be teaching him I just wasnt sure how to get started.

Last week I took my daughters boggle junior game and he did so wonderful

I started out with 3 different words and let him match the letters then by

the end of the day i would just show him the picture and he could spell the

word without looking.

I am not sure if this is typical of autisim or not but he can spell anything.

He loves walt Disney movies and if you give him letter tiles he will spell

Walt Disney Presents....

and can spell the title of any Disney movie it is amazing.

I have fallen in love with him quickly.

He also does great with preschool computer programs.

Last year I worked with a downs syndrome child and that was easy for me

because i have a cousin who has down syndrome so i kind of new what kind of

things to do plus alot of what her parents wanted her to learn was life

skills and with his new boy i am not allowed to teach him any life skills.

anyways sorry for rambling.

At 02:08 AM 10/29/2001 -0000, you wrote:

>Welcome ,

>What a caring Angel you are , requesting for information to assist

>this 6 yr.old boy . Hope you find many answers to guide him in the

>right direction . If an IEP has been done on him , what are the goals

>needed for him ? Check what Joan and others from this list have

>shared under Bookmarks and Files . There are great information that

>have been posted . We have many SITES or information to share , but

>once you mention which are needed the most would help , so that our

>professional PARENTS from this list could assist your questions .

>You've already mentioned he is nonverbal , so check out what I

>mention above . Here are a few sites in the mean time to check out .

>http://www.isn.net/~jypsy/autilink.jtm

>http://www.bbbautism.com

>http://www.autisms.org/Links.htm

>Hmm, small town , sounds like the more you learn , you could start

>providing some services . Many families would enjoy that in your

>town . Also, try to find out if any resources are available in your

>town ? You already have the best resource at your finger tips , the

>internet . Do not hesitate to ask questions , many here are just

>wonderful . I could vouch for that . Hope you find our list helpful .

>Luck .

>Irma, 13,DS/ASD.

>

>> Hello My name is .

>> I joined this list in hope of guidance.

>> I am a para at our local grade school and this year an autistic boy

>has

>> joined our school.

>> We live in a small town so we have no autistic programs available

>so they

>> just assigned me to him

>> but have gave me no real guidance as how to teach him.

>> He is a wonderful child. he is non verbal but is very bright. He is

>6 years

>> old.

>> I know he has alot of potential but i have no idea where to even

>start or

>> look for information to help me.

>> The school district is very unhelpful.

>> Can anyone give me ideas where to even start.

>> Thanks

>>

>

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

>Checkout our homepage for information, bookmarks, and photos

of our kids. Share favorite bookmarks, ideas, and other information by

including them. Don't forget, messages are a permanent record of the

archives for our list.

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

>

October 28, 2001

Loriann

Thanks for replying.

I am glad you explained how to break it down. Washing hands is actually one

thing I have been working on because he was just potty trained this summer

but does not wash his hands and now i know i was making it way to hard for

him.

Thanks again

October 28, 2001

Good websites, I really enjoyed looking at them. I'll

save that e-mail for later on uses.

__________________________________________________

October 29, 2001

In a message dated 10/28/01 10:18:50 PM US Eastern Standard Time,

skydiver@... writes:

<< The whole thing is that the mother and the school system neither one will

give in to the others wishes and i am put in the middle.

The mother wants him in the regular first grade room doing first grade work

and the school system doesnt want him there but has no choice at this

point . He is definetely not ready for first grade work but i understand

the mothers point and i try to break down the work as much as possible but

sometimes i am not sure exactly how to do it since the people over me wants

nothing to do with him hoping the mother will move him to another school. >>

Hi ,

Thanks for helping this little boy...he sounds great and so do you. Thanks

for doing all you can for him despite a school that isn't trying very hard to

help you out. I am one of those parents too that wants my child in an age

appropriate general ed classroom. My son has never done grade level work but

that has been OK. Help this boy do what he can do and hopefully the mom will

help you out in your quest for materials and information. In a case as you

described, having the mom on board with your efforts would be a great asset.

What about his teacher? This little boy sounds very capable and I personally

get angry when districts allow kids to fail because they don't put in a good

effort to help them. Good for you for trying. Personally, I also wouldn't

worry too much at age 6 about the life skills stuff...there is plenty the

parents can help him with at home and he is still very young. Just my

personal opinion.

Do you have an Autism Society of American branch in your state? The national

phone number is 800 - 3- AUTISM. They may provide someone who can come out

and help for free. I don't know where you live but there are probably some

autism resources in your state that you could access. You sound really

creative and like you are doing some good stuff. Look for someone to come in

for a few days to help you work on ways to adapt or accomodate his

curriiculum. Is there an autism teacher anywhere in the district that would

come over to help? It would help you if his mother could push for some of

this help. It may need to get written into his IEP. You didn't talk about his

social skills. Does he need any assistance in this area? Is behavior at all

a problem with him?

IN a county neighboring mine, there are about 70 kids with autism. This

county educates all their children with autism from grades K through 7 in

general education classrooms and then they start to do some resource pullout

after grade 7. The consultant for that program, who does alot of staff

training, provided me with the name of a book that she has found extremely

useful. It is " Understanding the Nature of Autism - A Practical

Guide " ...written by Janice Janzen. Published by Therapy Skill Builders. in

1996. It is a great resource.

Good luck to you and keep up the good work. From a parent's perpective, it

is wonderful that you care so much.

Lauri in MI, mother to Gene, age 13 with DS and autism.

October 29, 2001

In a message dated 10/29/01 6:06:15 AM Pacific Standard Time,

timothytlstein@... writes:

<< IN a county neighboring mine, there are about 70 kids with autism. This

county educates all their children with autism from grades K through 7 in

general education classrooms and then they start to do some resource pullout

after grade 7. >>

Gosh Laurie,

What about the kids that can't handle the noise level or being in large

groups? Do they make exceptions for that? I'm thinking that there could not

be enough supports for Seth to be able to attend a reg. ed. class. This

almost seems like they can in no way be doing any individualized plans to me.

Of course, this is my first year working with a school district and IEP's,

but it doesn't make sense to me. Can you share more on how it's working out

and if there are a lot of behavioral problems? Thanks

Gail :-)

October 29, 2001

In a message dated 10/29/01 9:51:03 AM US Eastern Standard Time,

smilinggail@... writes:

<< What about the kids that can't handle the noise level or being in large

groups? Do they make exceptions for that? I'm thinking that there could

not

be enough supports for Seth to be able to attend a reg. ed. class. This

almost seems like they can in no way be doing any individualized plans to

me.

Of course, this is my first year working with a school district and IEP's,

but it doesn't make sense to me. Can you share more on how it's working out

and if there are a lot of behavioral problems? Thanks

Gail :-) >>

Hi Gail,

The autism inclusion consultant, Kathy, in this county has been doing this

for fifteen years. It was perhaps wrong of me to say " all " kids in the

county with autism are included. They would not be included if their parents

objected to this. But there is not an autism classroom, so the children

would go into a room, like a cognitivly impaired classroom. Truthfully, I

don't think there are many parents who don't choose to have their children

included because that is the norm in this county adn from what I hear, they

are well supported. THe autism inclusion consultant really pushes to make it

successful for the children.

The county uses alot of parapros, but they don't just throw them in there.

She provides ongoing training in all aspects of autism to parparos adn

teachers. She has a key person in each building who is the school contact

for autism should problems arise adn to assist the teachers and parpros. This

person is trained a half a day a month as are the parapros. In the summer,

she provides two full days of training for the parapros and a full day for

the general ed teachers. She helps the schools work on helping the kids

develop their social skills and she helps them solve behavior problems.

She is a joy to know because she is so enthused about what she does. She met

Gene and shared alot of info with me. She didn't question at all that we

were trying to include Gene...she made a visit to a team meeting for me and

was invaluable in helping them understand his behaviors.

I live in the neighboring county and I don't know of anyone in my county who

can do what she does and has experience doing it. I don't kow what she does

about noise or sensory overload, etc. My quess is that she offers senosry

breaks, like a walk outside or down the hall, or a peek at the fish tank.

She may suggest that the walk be picking up attendance or delivering books,

etc. so the child feels they are contriubuting in some way. I know for Gene,

his sixth grade classroom has a small little side room with a window that he

will go to if he needs some down time. Somedays he needs that and somedays

he doesn't and they do alot of sensory activites with Gene. Unfortunately,

at Gene's school, we don't have a key inclusion contact in the school...or

someone who knows about autism. But Kathy, in the neighboring county, has

agreed to help with Gene in behavior issues if and as they arise. Hope that

answers your questions.

Lauri in MI

November 11, 2001

Loriann,

Thanks for sharing that theirs files in the

group of this section. I just went and thought that

all the files on it were neat. I didn't know there

was so many files!; untill I looked. Well I would say

that the icon is my favorite file- but then I always

chat on aol im- and I have like 5 icons. . so I guess

that's where that comes in. . Well y'all have a good

rest of the day and a good week. Oh yeah I also liked

the links that you added- I'll keep that e-mail for

future information.

About my test if y'all are wondering. . I did bad.

I failed both of them.

=====

__________________________________________________

November 24, 2001

Naomi - first and foremost is not to try herbal medicine

(aka alternative medicine) without consulting with your

doctor. Preferably a pediatric immunologist. Herbal

supplements have been known to have harmful side effects

in immune deficient patients. It brings on a type of

altered reaction, instead of boosting and helping the

immune system it mutates it and turns it against

itself. It is a common treatment to use prophylactic

antibiotics with immune deficient patients. Many times

it is 2 or 3 antibiotics alternated every so many weeks

so that resistance is cut down. My daughter has been on

prophylactic Septra for 3 1/2 yrs now. She has also

needed immune globulin replacement (IVIG) but the Septra

has helped some with chest and UTI infections. Sinus

infections are a common thing with IgA deficiency

because the sinus cavities are lined with IgA, as is the

mouth and stomach. My daughter has chronic sinus

infections (always show infection on the CT's but isn't

always symptomatic) and we use nasal irrigations with a

sinus lavage machine. would be considered too

young for this because there is some patient technique

involved. Some nasal sprays help, and sometimes

squirting sterile saline in the nose and suctioning out

the secretions with a bulb syringe might help. Propping

him up at night while he sleeps and feeding him in an

inclined position (and not laying him down till 30

minutes after he eats) helps ward off ear infections in

some babies. If your using formula, letting him nurse

on a bottle at bedtime in the crib can pool formula in

eustachian tubes sometimes and that might cause fluid

build up on his ears. But basically the IgA just isn't

there in his upper respiratory system to ward off

infections and it just runs in cycles.

Have you asked the doctor about the IgG results you

saw? Has he mentioned a referral to an immunologist?

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

November 24, 2001

Naomi - first and foremost is not to try herbal medicine

(aka alternative medicine) without consulting with your

doctor. Preferably a pediatric immunologist. Herbal

supplements have been known to have harmful side effects

in immune deficient patients. It brings on a type of

altered reaction, instead of boosting and helping the

immune system it mutates it and turns it against

itself. It is a common treatment to use prophylactic

antibiotics with immune deficient patients. Many times

it is 2 or 3 antibiotics alternated every so many weeks

so that resistance is cut down. My daughter has been on

prophylactic Septra for 3 1/2 yrs now. She has also

needed immune globulin replacement (IVIG) but the Septra

has helped some with chest and UTI infections. Sinus

infections are a common thing with IgA deficiency

because the sinus cavities are lined with IgA, as is the

mouth and stomach. My daughter has chronic sinus

infections (always show infection on the CT's but isn't

always symptomatic) and we use nasal irrigations with a

sinus lavage machine. would be considered too

young for this because there is some patient technique

involved. Some nasal sprays help, and sometimes

squirting sterile saline in the nose and suctioning out

the secretions with a bulb syringe might help. Propping

him up at night while he sleeps and feeding him in an

inclined position (and not laying him down till 30

minutes after he eats) helps ward off ear infections in

some babies. If your using formula, letting him nurse

on a bottle at bedtime in the crib can pool formula in

eustachian tubes sometimes and that might cause fluid

build up on his ears. But basically the IgA just isn't

there in his upper respiratory system to ward off

infections and it just runs in cycles.

Have you asked the doctor about the IgG results you

saw? Has he mentioned a referral to an immunologist?

--

Ursula Holleman

Macey's mom (6 yr. old with CVID,

asthma, sinus

disease, GERD, kidney reflux,

Sensory Integration

Disorder, Diabetes Insipidus)

http://home.att.net/~maceyh/

November 25, 2001

<< Have you asked the doctor about the IgG results you

saw? Has he mentioned a referral to an immunologist? >>

I did ask him about the IgG and the IgM results and got a wishy-washy answer.

I was told " we're not focusing on that right now, just on the IgA. " I would

really like to get to an immunologist, preferably one that has a pediatric

clientile. He has not referred us to an immunologist and I definitely need a

referral for my health insurance to cover it.

Thank you for the tips about the alternative medicine. I nurse . I try

to hold him in a more upright position during the day. At night, I really

have no choice since I am so tired, I just lay on my bed and he lies next to

me.

Again, thanks for the advice.

Hugs,

Naomi

November 25, 2001

<< Have you asked the doctor about the IgG results you

saw? Has he mentioned a referral to an immunologist? >>

I did ask him about the IgG and the IgM results and got a wishy-washy answer.

I was told " we're not focusing on that right now, just on the IgA. " I would

really like to get to an immunologist, preferably one that has a pediatric

clientile. He has not referred us to an immunologist and I definitely need a

referral for my health insurance to cover it.

Thank you for the tips about the alternative medicine. I nurse . I try

to hold him in a more upright position during the day. At night, I really

have no choice since I am so tired, I just lay on my bed and he lies next to

me.

Again, thanks for the advice.

Hugs,

Naomi

November 25, 2001

Hi Naomi, WELCOME to the group ! My name is Barbie, my son Lucas is 5 and has

been sick since the first week of his life with chronic ear, sinus etc.

infections. He started out with IgA deficiencies but gradually moved into

other forms of immunity problems. It is great you are breastfeeding your son.

The immunity you are giving him is not available in formula so nurse as much

into the 2nd year as possible. Each time you touch something you build

antibodies to that bug that is given back to him in your milk for your more

mature immune system. He is doing much than he would be if you were not

nursing. With breastfeeding the mechanics of the nipple and aereola in the

babies mouth fill up the mouth and close the eustian tubes to prevent the

flow into the ears so it is not a concern to nurse him lying down.. Formula

also is a foreign non living product that the body does not metabolize the

same way as live breastmilk. So keep at it. I also wanted to try some more

natural ways to help Lucas but became very leary about trying anything that

boosts the immune system because it makes a malfuntioning system malfunction

even further.

It also seems that a visit to a Regional Pediatric hospital with an

immunologist would be a good idea if you can get the referral set up. Ask

your doctor to either refer you or ask him to call the Immune Deficiency

Foundation docs to get a second opinon of his records. Living with children

that have immune defiencies is challenging but I know this group has made it

a much more bearable experience. I am a pediatric nurse as well as a

lactation consultant but I am speaking based on experiences rather than on a

medical level. Good Luck and continue to as questions. BARBIE Lucas,5

Dysgammaglobulinemia, low IgG, IgM, chronic sinus,ear infections. Asthma,

sensory integrations dysfunction etc. IvIg since June 2000.

November 25, 2001