this and that

[Guest guest]

HI Kathy:

You are posing excellent questions which after 16 months we are still

having to refine and review our answers to.

From a therapeutic perspective, giving in to dressing problems, giving hugs

and constant reassurance about yucky feelings are all participating in

rituals and will all only give temporary relief and cause worsening of OCD

in the long run. Having said this how to keep the peace in the home and

keep life a bit on track?

Having also been spat at, hit, much verbal diarrhea, you name it, we have

had to fine tune our parenting considerably to cope with the behaviors

which have come up. A lot of how you can handle things depends on whether

your child is responding to therapy, medication and/or CBT. If they are in

treatment and responding then things go a lot easier and you can treat them

the same as you would if they didn't have OCD and things will improve.

What we found is that we needed to pick our battles when things were not

going well. Of course you get lots of unhelpful comments about spoiled

brat, etc. but then these commenters are not living daily with our OCDer.

If your daugher is doing behavior therapy I would discuss the problems with

the therapist and come up with ways of addressing the problem coordinating

what is happening at home and what is happening in therapy. OCDers cannot

always be expected to be able to control their symptoms. However they have

to learn how to do this most of the time. What I tell my son is that he

cannot control his feelings, he cannot control his thoughts, but he can

control his behaviors. This is right out of Dr. Baer's wonderful book

" Getting Control " .

Insisting that an OCDer not perform a compulsion is likely to be met with a

very angry (due to abject fear) response. We have to learn this delicate

dance between helping them cope and preparing them for life in the real

world where these behaviors will get them into a lot of hot water. In

general we have learned to expect the same from our OCDer as if he didn't

have OCD. If the behavior is unacceptable, having OCD is no excuse for

negative behavior and negative consequences negotiated ahead of time will

be calmly applied as needed.

Parenting an OCDer is a great challenge at times. We found we need to be

very careful about being consistent and stay on top of things, be calm, be

patient, be understanding, and not take negative behaviors personally

because they are very fearful. Something which has helped me cope is to

remind myself that they more unattractive my son's behavior, the more he

needs me to be the best parent I can be and show him my love as strongly

and as constructively as possible.

We have had family therapy, taken parenting classes, read a lot of books

and we are still struggling to find our way. One book that helped quite a

bit is " The Explosive Child " by Dr. Greene. We had to change our rather

laissez faire parenting to something a lot more firm and consistent. There

is a lot of guilt to recover from along the way. We have made many

mistakes but try to apoligize for them and move along.

What have others found that works? Aloha, Kathy

At 05:20 PM 2/3/99 -0000, you wrote:

>From: klr@...

>

>I've received some of the joined letters and wasn't sure who had a good

idea for moderating the anger some of our OCD children experience, but I

would certainly like to know more about the technique.

>

>I agree with whomever said not to give into the dressing problems. In our

case we had no choice because it the very fact of having to get dressed

that is my daughter's problem, *no* clothes were acceptable, so . . . I

help her get dressed, many hugs and constant reminders that the yucky

feelings only last a short while--which for now is true.

>

>I need general parenting advice, I know next to nothing about what it's

reasonable to do: should I punish for OCD compulsions that are truly

unacceptable (today my daughter spit directly in my face in anger)? Can I

insist she not perform a compulsion, or make deals about them? What kind

of control *do* people with OCD have over their compulsions?

>

>--my girl was started just this week on Prozac, 10 mg each morning.

Next week we are to move her to 20 mg, and have an appointment with her

doctor on Monday to discuss side effects, etc.

>I believe this is a pretty low dose but am not sure. Her psychiatrist

works with children exclusively, so I have a fair degree of confidence in

him because of that. He told us at one point that children often need as

much or more medication than adults to achieve results due to their rapid

metabolisms among other things.

>

>Thanks everyone,

>Kathy R.

>

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

>

[Guest guest]

I'm going to respond to a variety of topics from the last few digests of

postings.

Thanks to all on the info on Vitamin C. I was ready to try the mega dose,

thinking that it was benign. If Dr. Cheney says watch it on the amount, and

some of you fellow CFS sufferers have had bad reactions to high doses, I will

proceed with caution. I'm going to try 1000mg a day and see if it helps or

disagrees with me, before slowly increasing.

I am very interested in the detox baths. Since I don't sweat, I'm going to

try the hot bath with Epsom salts and hydrogen peroxide. If I still don't

sweat I'll have to discuss the problem with my doc. I think that I'm going

to take my temperature while I'm in the bath, so I don't cook!

Steve, re Neurontin, I've been taking it for a year and a half. I started at

1200mg/day, increased to 2400mg/day after three months, then to 3200mg/day

after another three months. I am a big fan of Neurontin, people either love

it or hate it, the side effects can be quite unpleasant. My own experience;

I couldn't drive for a few weeks after each dosage increase, had trouble

walking for the first year. I would walk from point A to point B by

staggering to the side, hanging onto walls and furniture and finally started

using a cane. At about the one year mark I had begun physical therapy and

I'm not sure if that or just time took care of the side effects. In the

beginning I also had a pretty severe " hat band headache, " which is pain where

the hat band would be if I were wearing a hat. I've been at the 3200mg/day

dose for just about a year. The only down side to taking Neurontin that I

feel now is that I have to take it every six hours, because at this dose,

going even six and a half hours between doses makes me sick, nauseated and

feeling awful for a couple of hours after taking that later dose. This means

that I never get more than 6 hours of sleep at a time. It is quite

inconvenient, but I have adjusted. I'm hoping that I don't have to continue

on Neurontin forever, but I'm willing to take it for probably another year or

so, to get the maximum benefit that is possible, as I understand it.

There aren't any medication interactions with Neurontin EXCEPT magnesium.

Many people that take Neurontin and wish to continue taking magnesium take

them at least two hours apart. That is what I do, and it works out fine.

All that happens if you take the two together, is that the effectiveness of

that dose of Neurontin is reduced by 20%. I can't afford to negate any of

the possible benefit from Neurontin, so I'm careful about the two hour rule.

The benefit that I've received from taking Neurontin is that the allodynia

type pain that I was experiencing was brought under control, and finally is

gone. (I believe that St. 's Wort contributed to the allodynia, and I

stopped taking SJW in Oct. 98, over the last several months the " break

through " pain that I was experiencing disappeared, except when I tried NADH,

which brought it all back while I was taking it and for a few weeks after I

stopped.) My activity level increased from mostly bedbound to mostly

housebound thanks to Neurontin. Though I have disliked the side effects of

Neurontin, the positive effects vastly outweighed the negatives.

Sue B. I have a note to myself to mention that magnesium malate is what the

pharmacist/nutritionist that I heard lecture just the other day, insisted was

the only beneficial form of magnesium. I don't know why he believes that,

but he was emphatic. I'm currently taking three medications that aren't to

be taken with magnesium. I take them two hours after taking my

magnesium/malic acid supplements.

Patti- about rebound exercise, I bought my kids a " biggens " at the toy store

for $20. I can lay over the top of this big inflated rubber gym ball and

bounce for my rebounding exercise. The red biggens is the size I would

recommend, the smaller ones wouldn't work for me. I tried the rocking chair,

which is another type of rebound exercise, and is recommended for Alzheimer's

patients. The rocking chair was too strenuous for me. That discouraged me,

but the biggens is fun, I don't know if it is doing any good, but it is fun

and I don't get much fun in my life, so the endorphins are at least a good

thing.

Dr. Levine's talk last Sunday: something she mentioned was very interesting

to me, since I take Amantadine and find it essential. She said that it is

effective against Borna virus! I'll have to pin her down on more exact

information on this next time I see her. I've been taking Amantadine for two

years, first I thought it was helping me fight HHV-6, then I believed it was

helping by boosting dopamine, now I wonder about Borna virus, which may be

associated with CFS and or depression.

Barb

[Guest guest]

Thanks for that information. I have just started taking neurontin and I am

only taking about 600 mg a day. I have never really been bed bound for more

than a week at a time and only maybe 6 or 7 weeks over the last year. I am

trying to get back my cognitive functioning. It dose seem to help. I am a

college professor and with this drug I am able to increase my reading

comprehension. I have very little pain, do you know others that take it for

cognitive functioning not pain? How much do they take? I am thinking that I

will work up to 1200 mg over the next month and see how it goes from there.

I would love to hear from someone who takes neurontin for cognitive

functioning.

thanks

Steve

[Guest guest]

Gail, Kathy h, Vivian, Lesli, Louis, EVERYONE,

Thank you for your posts. I am so glad to have you all to share things

with - the good and the bad.

Tom has spent the day with my sister. His hair is now red, which I guess

is ok, but I'm so used to the blue and green it will be a change!! He

promised me that he'll cut it before court mid sept.! He did go to the

movies with staff tonight - just the two of them! They called to tell me how

great he is doing.

I love being part of this group, take care everyone,

wendy in canada

[Guest guest]

HI :

Red! I think that is a great color to represent Tom's coping spirit in his

" battle " against OCD. Do you really think he needs to change this prior to

court?

It is wonderful to hear how he and Yigal are coming along. Moving away

from denial is such a major step and a necessary one for starting to

recover from OCD. They have both come a long way, and you are doing such a

wonderful job getting out of the reassurance trap.

Last night I was re-reading Dr. Gravitz's book. I seem to get more out of

it each time I read it, at first I thought, yeah, yeah, I'm doing that

already. Now I realize there is still more for me to do in recovering from

my life as a para-OCD.

For those out there still worrying about the first day of school, this, for

Steve anyway, went pretty well. He is !so! organized and not in an OCD-way

with his school stuff. Neat, but not perfectionistic, before everything

was just shoved into his bag willy nilly. HIs spirits have been so good,

his closest friend is in his home room and on his team - it is all teaming

at school. He was upset about the 504 meeting tomorrow and asked why does

he have to be 504 now. We explained that here that helps pay for his

therapy (CBT and supportive) and that is why. He seemed to accept that as

I know his therapist is a very important person in his life right now.

Also he has decided to stay at 15 mg of Paxil for his MDD. That is such a

relief to me, since puberty is definitely lurking around the corner. I

think listening to Art Buchwald, Styron and Mike Wallace at the OCF

conference really made him realize that it is ok to be on an SSRI

maintenance dose if you have major depression.

Good luck to everyone with this new school year. Take care, aloha, Kathy (Ha)

kathyh@...

At 12:11 AM 8/25/99 EDT, you wrote:

>From: " W. Birk " <wb4@...>

>

>Gail, Kathy h, Vivian, Lesli, Louis, EVERYONE,

>

> Thank you for your posts. I am so glad to have you all to share things

>with - the good and the bad.

>

> Tom has spent the day with my sister. His hair is now red, which I guess

>is ok, but I'm so used to the blue and green it will be a change!! He

>promised me that he'll cut it before court mid sept.! He did go to the

>movies with staff tonight - just the two of them! They called to tell me how

>great he is doing.

>

> I love being part of this group, take care everyone,

>

> wendy in canada

>

[Guest guest]

In a message dated 9/9/00 11:48:05 PM Eastern Daylight Time,

scheibtribeboss@... writes:

<< and to everyone else, if i missed you, i am sorry...i have major backlog

of email and have spent so much time at kids school... camerons teacher had

surgery, they forgot to put him on bus friday and i had a panic attack.......

more on that later and ashton is oh welllll......just ashton.....

>>

Glad to see you are still with us Leah! Looking forward to all of your

vividly written adventures! LOL Hope all is going well .

Gail

[Guest guest]

lori, i am glad you had a night out even if nosy neighbor showed up with her two

little children in tow.....lmao leave yours at respite to see someone

elses.....always ends up that way...... i am peeved about the kid at the

playground, it chaps my butt to see kids be rude and disrespectful to our

kids....... it could happen to them anytime.....maybe reality will hit those

inconsiderate a===holes in the head one day...... ps. my friend puts underwear

on over her son's pullup when they are out at places where there are other big

kids....dont know if th is will help, just an idea......tc leah

sara,

good luck at the doctor's and with elie's medications..... the sleeping in

school is an issue here, but i will spell that out when i write my weeks

summary.... other than sleeping how is he doing in school?????? are the teachers

and aides improving, is it getting better for him?????????

michelle, again YOU GO GIRL!!!! you sound like me, i am giving these ingrates

one more week to get their cards in line or we are going to battle again.....its

just not enough to get them in school, the damn supports need to be in

place........ good luck and i am rooting tooting and fresh n fruiting with

you........ dont back down...... tc leah

ps is the lawsuit due process or just a lawsuit for negligence........

[Guest guest]

hi i will let you know how the luvox goes...as far as the clonidine

is she taking a high dose of it? maybe for once its simply the

natural process of puberty taking over and thats why she is feeling

more tired( we can have " normal " stuff happen right? lol

jk)....geeesh! i know what you mean, my son is going to be 9 in feb

and hes getting more hair on his body and is very interested in one

girl in his class at school. they have to keep them seperated in gyn

because they are " touchy feely " with each other.....so i i relate i

am NOT ready for this!!!

i mean its nothing overly sexual but just increased interest...thats

enough for me!!!

it seems kids are growing up quicker in the past 10 yearsm going

through puberty and all that. good luck and keep me posted!!!

MARIE

> gail, thanks for the support!!!! it means so much to know moms like

us don't think i am totally crazy.... i heard one school official

refer to me as " the mom we dont want to deal with " !!! heheh but i

havent also been so vocal and strong in my convictions in regards to

ashtons rights and mine as her mom.....i was very young when i had

her and very complient with whatever the school said......not

anymore, i am mommy from hell with her guns loaded, hheeheheh

>

> jeannie, i am sooooooo glad mark is having a good year now..... and

stephanie, keep up the good work...... is he mainstreamed any

jeannie...i can't keep up with my own two let alone anyone else's

kds.......lmao

>

> jill, good luck with the paxil dying off and i am so glad you found

an activity than tanner enjoys and the whole family can enjoy.....our

is swimming or going out in a boat............. good luck

>

> lucille, it was me who posted about the dynavox......... i don't

think it's the answer, an increase in sign language is my

perspective...i talked to ashtons spec oly horse coach yesterday and

she said she would think an increase in sign.......she just happens

to be an slp in next county.......damn i need to move......... if the

kid's not hearing hello, what is speaking going to do for her.....not

jack doodoo.....

>

> marie, let me know how jared does on the luvox.....i am curious

too......ashton has been on clonidine for four years, but for some

reason is starting to fall asleep...... i dont know if its because

shes into puberty.......IKES IKES IKES..... how does one do it....she

just turned nine and has pubies down there and is getting

boobs......doctor confirmed breast tissue is present..... i need a

miracle........

>

> lori, thanks for sharing the websites.... heres a really good one

for sensory integration resources, equipment,

ect...www.sinetwork.org/index.htm-

>

>

>

[Guest guest]

Hi everyone,

I want to let everyone know that I am reading all the messages, laughing,

crying and celebrating with ya'll at every turn. I dont' get a chance to

post as much as I would like, but I am with you all the way.

Donna-have fun on your girls weekend. I sure could use one of those

, I'm so excited to hear of JJ's success. You know with other online

" friendships " , these may sound like hollow " socially acceptable " things

to do and say, but I know that on this loop, everyone is really

concerned, and really happy with each story.

So glad to hear of all the successes, I just cant' keep them straight. We

really do need to have a " conference " of our own, so that faces can be

put with all the names.

S

________________________________________________________________

GET INTERNET ACCESS FROM JUNO!

Juno offers FREE or PREMIUM Internet access for less!

Join Juno today! For your FREE software, visit:

http://dl.www.juno.com/get/tagj.

[Guest guest]

In a message dated 1/13/01 10:50:28 PM Eastern Standard Time, paul.3@...

writes:

<< The other very simple hierarchy of movement that an OT told us to do is

this:

First, vertical movement, such as jumping on a mini tramp or bouncing on a

therapy ball.

Next, front-to-back-to front, such as on a regular swing. This is very

organizing for kids whose systems are disorganized....

Then, side-to-side, such as in a rope or hammock swing or on a tire swing.

Last, circular, such as a carousel provides or a circular tire or suspended

swing. Figure 8's or random patterns are not as organizing for him. (I

know that some OT's will use a figure 8 pattern, but they know how to

observe kid's pupils and coloring to keep track of any physiological

changes.)

>>

Wow, never heard of this before Beth. Can't wait for your next post!!!

Gail

[Guest guest]

In a message dated 9/14/01 10:06:38 PM Eastern Daylight Time,

okieleah@... writes:

> donna,

> i am so glad that laura is coming home... i feel for her...what an eye

> opening freshmen experience she is living through.... bet it makes her want

> to run home to philly and never see dc again....even if it's only for the

> weekend, hugs and prayers to you.....

Thanks Leah. AND to you!!! I am VERY behind in email, but read you're

post on your nightmare day!! I am so sorry honey!!! Poor Ashton and Poor

You!!!! Giant {{{{{{{{{{{{{{{{hugs}}}}}}}}}}}}}}] Leah!!!

is home (came home 4:30 in the morning yesterday) and is glad to be

here. However, she said she also would have stayed in DC. While she's

afraid, she's trying to be brave along with the other students. It's doing

my heart good to have her in her own bed.

My BIL drove up to NY last night and is right in there filling buckets along

with other rescue workers. He's an engineer with licenses for plumbing,

electrical...all that. He called Duff from the site and he was very

emotional. He said the other buildings really look like they're going to

come down. is supposed to come home sometime this morning.

Donna

[Guest guest]

Leah,

Your welcome . Its nice that we have this list . During our pain of

mourning of our tradegy . We need each other ,besides dealing with

our daily lives its double duty for our hearts, on having to raise

challenging kids that is continous on their behavior and medical

issues . I really do hope we've helped each other with some support

as many outsider do not understand us parents needing every comfort

words , even some rest to re-energize . If you remember my husbands

job ,here is fear because he has returned to it , it will never be

the same as we all have been affected by it . As a friend told

me . " Please don't lose your will , as it may take a long while to

find and erradicate the sources of this type of evil " . We all need

each other . Glad you were able to get some rest and you had a better

day . This was nice to read on your part . Do take care and always

many prayers.

God Bless America.

Irma , 13,DS/ASD.

>

>

> marisa,shawna,irma, charlyne, and shawna and everyone else,

> thanks for the support... today was a good day for me...i slept,

was lazy

> and took cameron to a tiger cub meeting...he is soooo excited...the

focus

> was off of ashton and i was just a normal mom.... it felt good to

be just

> that and nothing else.....my life seems simple when i turn on the

news, read

> the paper or listen to the radio.... we(me and cameron)

participated in the

> candlelight vigil in our area.. lots of people, lots of military

and gov.

> neighbors.... very eye opening..... take to all and thanks for the

ongoing

> support..... its nice to know i can click on my email and find

everlasting

> friends....hugs to all

>

> ck,

> i am so happy to hear that ian's adjustment is going slightly

smoother... i

> am sure it helps relieve some of your anxiety knowing he is hanging

in

> there.... may peace be with you the next 21 days.... hugs and lots

of

> courage coming to you.

>

> donna,

> i am so glad that laura is coming home... i feel for her...what an

eye

> opening freshmen experience she is living through.... bet it makes

her want

> to run home to philly and never see dc again....even if it's only

for the

> weekend, hugs and prayers to you.....

>

> everyone else, continued prayer and warm thoughts.me, mom to ashton

and

> cameron

>

> >

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

From the digest---

Well, we don't have cable either! Yaaaayyy! We couldn't be bothered; we

don't rent movies. We do more music/reading and network tv when it's worth

watching. Ben loves PBS, and even the stuff that's way over his

head he'll keep on. He is currently not into watching any videos, which is

fine with me. (He is obsessed with the STATION IDENTIFICATION blurb for

public television- has been for years. He'll stand and flap his arms and

dance around, he gets so excited. Very weird! I've heard of other kids

who " just " have autism who do that also.)

Ben is ambidextrous, leaning towards being a lefty.

And Charlyne, I've had doctors (the opthamalogist, PB's dentist, and *my*

doctor) be fascinated by Ben and ask all kinds of questions about how

he's doing that don't relate to the exam at hand. In fact, I was checking

out a new doctor for myself and after I told her about PB she started

asking me questions becuase her nephew has autism and she wanted some

advice..........Sheeeeeesh!! I always think that people like that are

trying on our lives in their heads, and they can't make it fit....

Hope those of you celebrating Passover had a very blessed one, and the same

to those observing Holy Week and Easter.

I will be playing the organ for a Good Friday service and then two Masses

on Easter Sunday morning. This is my busy week, but since I am only one of

several musicians for my too-large parish, I don't have to worry about Holy

Thursday, the Easter Vigil (2 + hours long) and the seven *other* Masses on

Easter Sunday morning. At 9 and 10:30 there will be three Masses

simultaneously- the church, the hall, and the gym. (I'm in the gym). DH,

who doesn't go to church, will bring PB to the 10:30 Mass and see how if

goes. He hasn't made it through a whole Mass for several years now. But

we always give it a try. I'm envious of those of you whose darlin's can

last the whole way through a service, and try and participate. I got over

feeling bad about PB not managing to stay. We just do what we can, say

prayers at home, and hope that with maturity will come an ability to sit

for even 30 minutes.

God Bless Us, Every One!

Beth Mum to Ben age 11 1/2

[Guest guest]

In a message dated 3/29/02 12:38:57 AM Eastern Standard Time, paul.3@...

writes:

> (I'm in the gym). DH,

> who doesn't go to church, will bring PB to the 10:30 Mass and see how if

> goes. He hasn't made it through a whole Mass for several years now. But

> we always give it a try. I'm envious of those of you whose darlin's can

> last the whole way through a service, and try and participate. I got over

> feeling bad about PB not managing to stay. We just do what we can, say

> prayers at home, and hope that with maturity will come an ability to sit

> for even 30 minutes.

Oh MB, I SO relate!!!!!!!! We keep trying to bring Maddie to Mass.

Typically, Duff goes to the 10 (he's a eucharistic minister) and then I take

n and Allie ( is down in DC at school and Joe lives on his own) to

the 11:15, but we much prefer to go as a family. On the holidays, we do

take her and suffer through it. Mostly Duff takes the beating (she's

squirming and trying to escape under the pews the whole time). I read

recently in a newsletter some recommendations on helping your child with

autism adapt to going to church. They said go often to the church and spend

as much time there as possible letting your child run around, get acclimated

when no one is there. I plan on trying this with Maddie. You're supposed

to try it often, but I just read this, so Duff and I will try to go over

sometime today and tomorrow with her.

<<Hope those of you celebrating Passover had a very blessed one, and the same

to those observing Holy Week and Easter.>>

Ditto!!!

Good luck with your playing MB.

Donna

[Guest guest]

In a message dated 3/29/2002 12:39:01 AM Eastern Standard Time,

paul.3@... writes:

> Hope those of you celebrating Passover had a very blessed one, and the same

> to those observing Holy Week and Easter.

>

Hi beth & Group,

Ditto, I would also like to wish everyone a happy holiday. beth this was

the first time a dr. has actually asked me all these questions.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 3/29/02 9:51:49 AM Eastern Standard Time,

ICANFIELD@... writes:

> Before DH decided he would just take out and

> wait in the car. I found out later that they would drive to a Taco

> place and eat. No wonder continued.

LOLOLOL Irma!!!! Yea, I can see how wouldn't want to go to mass when

he can go to TAco Bell instead.....LOL

We take Maddie's things with us too, including little snacks, but to no

avail. Sometimes, we've been able to get more minutes out of her by

taking the hymnal book and fanning the pages in front of her face.....we make

quite a sight in church sometimes...LOL

Donna

[Guest guest]

In a message dated 3/29/02 9:51:49 AM Eastern Standard Time,

ICANFIELD@... writes:

> Before DH decided he would just take out and

> wait in the car. I found out later that they would drive to a Taco

> place and eat. No wonder continued.

LOLOLOL Irma!!!! Yea, I can see how wouldn't want to go to mass when

he can go to TAco Bell instead.....LOL

We take Maddie's things with us too, including little snacks, but to no

avail. Sometimes, we've been able to get more minutes out of her by

taking the hymnal book and fanning the pages in front of her face.....we make

quite a sight in church sometimes...LOL

Donna

[Guest guest]

Hi,

Boy! Can I relate to this, too. Ok, been living here in San

for 6 yrs. now and this is how long it took us to finally have

where he is at now, " 1 whole hour " . Ok, when we go to Mass, we have

take a bag of his books, video, certain action toys, his favorite

dangling toy, which by the way is an elephant and now its headless.

Still have to keep the routine,though or will be back to the drawing

board. We were in your shoes before, never staying long and always

leaving early. Before DH decided he would just take out and

wait in the car. I found out later that they would drive to a Taco

place and eat. No wonder continued. Anyways, as there were

some Sundays where DH would be at work. I decided to give it a try

and once again knew exactly what to do and waited by the door

and the people behind looked at me and signed wait and pointed to

their eyes that they would keep an eye out. I signed ok, sure enough

returned to the pew and he hung around. He finally caught on,

but it still takes some work. Isn't that amazing during Mass time,

sign language comes in handy. So luck with this journey.

Irma, 13,DS/ASD

> In a message dated 3/29/02 12:38:57 AM Eastern Standard Time,

paul.3@o...

> writes:

>

>

> > (I'm in the gym). DH,

> > who doesn't go to church, will bring PB to the 10:30 Mass and see

how if

> > goes. He hasn't made it through a whole Mass for several years

now. But

> > we always give it a try. I'm envious of those of you whose

darlin's can

> > last the whole way through a service, and try and participate. I

got over

> > feeling bad about PB not managing to stay. We just do what we

can, say

> > prayers at home, and hope that with maturity will come an ability

to sit

> > for even 30 minutes.

>

> Oh MB, I SO relate!!!!!!!! We keep trying to bring Maddie to

Mass.

> Typically, Duff goes to the 10 (he's a eucharistic minister) and

then I take

> n and Allie ( is down in DC at school and Joe lives on

his own) to

> the 11:15, but we much prefer to go as a family. On the

holidays, we do

> take her and suffer through it. Mostly Duff takes the beating

(she's

> squirming and trying to escape under the pews the whole time). I

read

> recently in a newsletter some recommendations on helping your child

with

> autism adapt to going to church. They said go often to the church

and spend

> as much time there as possible letting your child run around, get

acclimated

> when no one is there. I plan on trying this with Maddie.

You're supposed

> to try it often, but I just read this, so Duff and I will try to go

over

> sometime today and tomorrow with her.

>

> <<Hope those of you celebrating Passover had a very blessed one,

and the same

> to those observing Holy Week and Easter.>>

>

> Ditto!!!

> Good luck with your playing MB.

> Donna

>

>

>

[Guest guest]

Ditto, wish everyone a good holiday

--- charlyne1121@... wrote:

> In a message dated 3/29/2002 12:39:01 AM Eastern

> Standard Time,

> paul.3@... writes:

>

>

> > Hope those of you celebrating Passover had a very

> blessed one, and the same

> > to those observing Holy Week and Easter.

> >

>

> Hi beth & Group,

> Ditto, I would also like to wish everyone a happy

> holiday. beth this was

> the first time a dr. has actually asked me all these

> questions.

> Charlyne

> Mom to Zeb 9 DS/OCD ?

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

Ditto, wish everyone a good holiday

--- charlyne1121@... wrote:

> In a message dated 3/29/2002 12:39:01 AM Eastern

> Standard Time,

> paul.3@... writes:

>

>

> > Hope those of you celebrating Passover had a very

> blessed one, and the same

> > to those observing Holy Week and Easter.

> >

>

> Hi beth & Group,

> Ditto, I would also like to wish everyone a happy

> holiday. beth this was

> the first time a dr. has actually asked me all these

> questions.

> Charlyne

> Mom to Zeb 9 DS/OCD ?

>

>

> [Non-text portions of this message have been

> removed]

>

>

__________________________________________________

[Guest guest]

> LOLOLOL Irma!!!! Yea, I can see how wouldn't want to go to

mass when he can go to TAco Bell instead.....LOL

> We take Maddie's things with us too, including little snacks, but

to no avail. Sometimes, we've been able to get more minutes out of

her by taking the hymnal book and fanning the pages in front of her

face.....we make quite a sight in church sometimes...LOL

> Donna

Oh! Yes, I could just picture that, LOL. The things we do, I'm pretty

sure we can all write our stories. Boy! Can you imagine the size of

the book. Oh! I still picture you and Maddie heading home. What

a " CUTIE " . Ok, who's the publisher? We can sell it to make profits

for a HUGE DS/ASD REUNION. Just a thought as I would LOVE to meet

everyone and your kids. Please forgive my imagination. : )

Irma

[Guest guest]

> LOLOLOL Irma!!!! Yea, I can see how wouldn't want to go to

mass when he can go to TAco Bell instead.....LOL

> We take Maddie's things with us too, including little snacks, but

to no avail. Sometimes, we've been able to get more minutes out of

her by taking the hymnal book and fanning the pages in front of her

face.....we make quite a sight in church sometimes...LOL

> Donna

Oh! Yes, I could just picture that, LOL. The things we do, I'm pretty

sure we can all write our stories. Boy! Can you imagine the size of

the book. Oh! I still picture you and Maddie heading home. What

a " CUTIE " . Ok, who's the publisher? We can sell it to make profits

for a HUGE DS/ASD REUNION. Just a thought as I would LOVE to meet

everyone and your kids. Please forgive my imagination. : )

Irma

[Guest guest]

In a message dated 3/29/02 7:56:52 AM Central Standard Time, duffey48@...

writes:

>

> > (I'm in the gym). DH,

> > who doesn't go to church, will bring PB to the 10:30 Mass and see how if

> > goes. He hasn't made it through a whole Mass for several years now. But

> > we always give it a try. I'm envious of those of you whose darlin's can

> > last the whole way through a service, and try and participate. I got

> over

> > feeling bad about PB not managing to stay. We just do what we can, say

> > prayers at home, and hope that with maturity will come an ability to sit

> > for even 30 minutes.

>

> Oh MB, I SO relate!!!!!!!! We keep trying to bring Maddie to Mass.

> Typically, Duff goes to the 10 (he's a eucharistic minister) and then I

> take

> n and Allie ( is down in DC at school and Joe lives on his own)

> to

> the 11:15, but we much prefer to go as a family. On the holidays, we do

>

> take her and suffer through it. Mostly Duff takes the beating (she's

> squirming and trying to escape under the pews the whole time). I read

> recently in a newsletter some recommendations on helping your child with

> autism adapt to going to church. They said go often to the church and

> spend

> as much time there as possible letting your child run around, get

> acclimated

> when no one is there. I plan on trying this with Maddie. You're

> supposed

> to try it often, but I just read this, so Duff and I will try to go over

> sometime today and tomorrow with her.

>

> <<Hope those of you celebrating Passover had a very blessed one, and the

> same

> to those observing Holy Week and Easter.>>

>

> Ditto!!!

> Good luck with your playing MB.

> Donna

>

>

I don't attend church because I can't sit there with through the whole

thing. He can make it if I really work at it but I " m exhausted by the end.

When I got married I was managing the group home for developmentally disabled

kids. They all attended my wedding. Well, one just walked the halls yelling

" no mama " . One of the girls giggled the whole time, another whispered the

pledge of Allegiance over and over. The oldest of the boys just glared at my

husband the whole time.

Karyn

[Guest guest]

In a message dated 3/29/02 12:24:22 PM Central Standard Time,

duffey48@... writes:

> LOLOLOL Irma!!!! Yea, I can see how wouldn't want to go to mass when

>

> he can go to TAco Bell instead.....LOL

> We take Maddie's things with us too, including little snacks, but to no

> avail. Sometimes, we've been able to get more minutes out of her by

> taking the hymnal book and fanning the pages in front of her face.....we

> make

> quite a sight in church sometimes...LOL

> Donna

>

>

>

I have to have a bag of sour patch kids candy. If I run out before the

service is over we must leave.

Karyn

[Guest guest]

Aww a ds-asd reunion would be so much fun.

Sandy

mom to le (5, ds-asd) and Adam (2)

Re: this and that

> LOLOLOL Irma!!!! Yea, I can see how wouldn't want to go to

mass when he can go to TAco Bell instead.....LOL

> We take Maddie's things with us too, including little snacks, but

to no avail. Sometimes, we've been able to get more minutes out of

her by taking the hymnal book and fanning the pages in front of her

face.....we make quite a sight in church sometimes...LOL

> Donna

Oh! Yes, I could just picture that, LOL. The things we do, I'm pretty

sure we can all write our stories. Boy! Can you imagine the size of

the book. Oh! I still picture you and Maddie heading home. What

a " CUTIE " . Ok, who's the publisher? We can sell it to make profits

for a HUGE DS/ASD REUNION. Just a thought as I would LOVE to meet

everyone and your kids. Please forgive my imagination. : )

Irma