Just venting

[Guest guest]

Lana,

Venting is good! The emotions we experience when going through this

ordeal are very real and very strong. And I'm sure that most of us

also have some anxiety problems ourselves.

I have cried many tears and been very angry, too. So often we are

left to trial and error to find what will help. And nothing works

quickly enough.

I think that telling about the OCD will help him. I wish we

had known about our daughter's OCD sooner and had been able to begin

the conversations about it BEFORE she was a teenager. It is much

more difficult to dialogue about things when their normal

developmental goal is separation from their parents and questioning

their own values.

I don't have an answer about whether to allow him to do what may

bring on anxiety. My " gut " level is to let him try and see how it

goes. Can you develop a " backup " plan that will allow him to get out

of the situation gracefully if it becomes overwhelming? One thing

I've learned is that the OCD is my daughter's, not mine. She needs

to learn about how it affects her and take responsibility for what

she can and cannot handle. Maybe can learn about himself

through this situation. Trust your instincts, you are his mother and

you need to feel good about your ability to make judgements for him.

Kids are resilient and you can only do the best you can do at the

time. Good luck and keep us posted.

Gwen in Oregon

> Hi all! I need to vent! had an allergic reaction to Zoloft-

> body is covered in a rash-he has been on this med for a little over

2

> weeks. Ugh! I am having a hard time finding a therapist for him, he

> (Park) wants a man, so I have talked with several, they all tell me

> different things, he doesnt need CBT he needs ERP or BT-what does

> that mean I thought they all are similiar.UGH again! Then they

seeem

> surprised that OCD is the only thing that has been diagnosed. Ok

that

> makes me question my Dr. This all is so confusing, I want to scream

> and cry-which I have been doing most of today!

> On a different note, let me ask this: Park wants to do something

that

> I know will be stressful for him, and right now he doesnt realize

> that. What do I do? Do I let him make his own decision or do I jump

> in and say no. Do I protect him from obvious stressful situations?

I

> know that therapy will help with these questions, but until our

appt

> what do I do? By the way I decided on BT treatment. We are telling

> Park about OCD tomorrow (Friday). Then maybe he will have some

relief

> knowing things are not his doing. I dont know how well he will

> understand this, OCD along with the depression is all that he has

> known during his 7 years. We believe he has had this since age 1

> maybe before. He is so sad and angry all the time, it really makes

me

> upset that he says he doesnt know what being happy feels like.

> Thank you for letting me vent! This probably didnt make a lot of

> sense but I have 1001 thoughts running thru my mind, and I'm slowly

> letting them out-all jumbled up of course!

[Guest guest]

Hi Lana:

I'm so sorry to hear about 's allergy to Zoloft. I hope you can

readily switch him to another SSRI that does not trigger an allergic

reaction. The right SSRI can be nothing short of miraculous with symptoms

of depression in our experience.

E & RP is a form of CBT. CBT includes a number of different approaches, some

of which do not really help OCD, e.g. relaxation techniques. BT is

behavior therapy and E & RP is a form of behavior therapy. C is the

cognitive part where the person learns about OCD and how it impacts their

thoughts, feelings and behavior. I think it is important, even at 7 to

give as much of an understanding as he can process to help him to do

the hard work of E & RP.

Dr. Baer advised me to find a male therapist for Steve. Finally I managed

this but he works 250 miles away and we could only get there once a week.

Steve needed therapy 3 times a week at first and his psychologist helped us

find someone locally he could train to do CBT with Steve. We found a

woman, but since she is very good, this worked well too.

It is difficult to know how to comment about what Park wants to do that you

are worried about. In general, it is important to let our OCDers take

risks and to try the things they want to do as this sends them a very

important message. They learn that we believe in them and their ability to

pick themselves up after they are knocked down and get back on track. If

we act anxious and are very protective, we unwittingly reinforce their

anxiety. Anxiety is so contagious! Having said that, if he wants to go

bungee jumping with an unsafe cord, don't let him do it (or anything like

that) <VBG>. We find it is particularly important in dealing with an OCDer

with perfectionism issues, to let him mess up and keep showing him our love

and commitment, it is a form of E & RP.

The hard part is how to handle your own feelings while this is going on. I

distract myself and hope things don't blow up too much. Also I realize

that some of this is my own GAD and I focus on working on that.

Good luck, take care, aloha, Kathy (H)

kathyh@...

At 12:35 AM 10/13/2000 -0000, you wrote:

>Hi all! I need to vent! had an allergic reaction to Zoloft-

>body is covered in a rash-he has been on this med for a little over 2

>weeks. Ugh! I am having a hard time finding a therapist for him, he

>(Park) wants a man, so I have talked with several, they all tell me

>different things, he doesnt need CBT he needs ERP or BT-what does

>that mean I thought they all are similiar.UGH again! Then they seeem

>surprised that OCD is the only thing that has been diagnosed. Ok that

>makes me question my Dr. This all is so confusing, I want to scream

>and cry-which I have been doing most of today!

>On a different note, let me ask this: Park wants to do something that

>I know will be stressful for him, and right now he doesnt realize

>that. What do I do? Do I let him make his own decision or do I jump

>in and say no. Do I protect him from obvious stressful situations? I

>know that therapy will help with these questions, but until our appt

>what do I do? By the way I decided on BT treatment. We are telling

>Park about OCD tomorrow (Friday). Then maybe he will have some relief

>knowing things are not his doing. I dont know how well he will

>understand this, OCD along with the depression is all that he has

>known during his 7 years. We believe he has had this since age 1

>maybe before. He is so sad and angry all the time, it really makes me

>upset that he says he doesnt know what being happy feels like.

>Thank you for letting me vent! This probably didnt make a lot of

>sense but I have 1001 thoughts running thru my mind, and I'm slowly

>letting them out-all jumbled up of course!

[Guest guest]

Hi Lana,

Interesting to me that your son had an allergic reaction to Zoloft. My son

was started on Prozac and after 5 weeks got a rash and had to be switched to

Zoloft. So far so good!! It was stressful. I know what you mean. We had

just started treatment also and were seeing some improvement when we had to

switch.

I like to believe that someday this will all be better. It's hard to see

the light at the end of the tunnel for us right now also. We just started

CBT and I think it takes a while to get into it. It's all a slow process.

It took me all summer to find a behavioral therapist.

I am lucky because this year his teacher is very understanding and calls me

every couple of weeks to tell me where the problems are arising at school.

I think this kind of communication is essential because school can be so

stressful for these kids. My son is so disorganized and often does his

homework but doesn't understand the proper forum for handing it in. Now at

least the teacher understands he's doing it and that she just has to

determine a way to get it from him.

My son is 9 and was diagnosed in June with OCD although I think he's had it

for years and I think there are other comorbidities but I can't seem to get

a full diagnosis anywhere. There is no doubt that it's all very

frustrating.

Hang in there with me and maybe we can trade ideas as things come along.

Terry

Just Venting

> Hi all! I need to vent! had an allergic reaction to Zoloft-

> body is covered in a rash-he has been on this med for a little over 2

> weeks. Ugh! I am having a hard time finding a therapist for him, he

> (Park) wants a man, so I have talked with several, they all tell me

> different things, he doesnt need CBT he needs ERP or BT-what does

> that mean I thought they all are similiar.UGH again! Then they seeem

> surprised that OCD is the only thing that has been diagnosed. Ok that

> makes me question my Dr. This all is so confusing, I want to scream

> and cry-which I have been doing most of today!

> On a different note, let me ask this: Park wants to do something that

> I know will be stressful for him, and right now he doesnt realize

> that. What do I do? Do I let him make his own decision or do I jump

> in and say no. Do I protect him from obvious stressful situations? I

> know that therapy will help with these questions, but until our appt

> what do I do? By the way I decided on BT treatment. We are telling

> Park about OCD tomorrow (Friday). Then maybe he will have some relief

> knowing things are not his doing. I dont know how well he will

> understand this, OCD along with the depression is all that he has

> known during his 7 years. We believe he has had this since age 1

> maybe before. He is so sad and angry all the time, it really makes me

> upset that he says he doesnt know what being happy feels like.

> Thank you for letting me vent! This probably didnt make a lot of

> sense but I have 1001 thoughts running thru my mind, and I'm slowly

> letting them out-all jumbled up of course!

>

>

>

> You may subscribe to the OCD-L by emailing listserv@... . In

the body of your message write: subscribe OCD-L your name. You may

subscribe to the Parents of Adults with OCD List at

parentsofadultswithOCD . You may access the

files, links, and archives for our list at

. Our list advisors are Tamar

Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are

Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Roman, and

Jackie Stout. Subscription issues, problems, or suggestions may be

addressed to Louis Harkins, list owner, at harkins@... .

>

>

>

[Guest guest]

Hi Kathy,

Here's a question I have. My son understands that he has OCD. Everything

he does he blames on the OCD. Anything I correct or criticize he blames on

the ocd.So everything I comment on he yells at me that it's the ocd and he

can't help it and I shouldn't yell at him. I get so frustrated though.

Sometimes I just can't stand it. Sometimes I can't even talk to him because

he gets so anxious because it's the ocd and not him. I am at my wit's end.

He has seen Dr. Hat 3 times but I realize that's barely scratching the

surface.

Any suggestions?

Terry

Re: Just Venting

> Hi Lana:

>

> I'm so sorry to hear about 's allergy to Zoloft. I hope you can

> readily switch him to another SSRI that does not trigger an allergic

> reaction. The right SSRI can be nothing short of miraculous with symptoms

> of depression in our experience.

>

> E & RP is a form of CBT. CBT includes a number of different approaches, some

> of which do not really help OCD, e.g. relaxation techniques. BT is

> behavior therapy and E & RP is a form of behavior therapy. C is the

> cognitive part where the person learns about OCD and how it impacts their

> thoughts, feelings and behavior. I think it is important, even at 7 to

> give as much of an understanding as he can process to help him to

do

> the hard work of E & RP.

>

> Dr. Baer advised me to find a male therapist for Steve. Finally I managed

> this but he works 250 miles away and we could only get there once a week.

> Steve needed therapy 3 times a week at first and his psychologist helped

us

> find someone locally he could train to do CBT with Steve. We found a

> woman, but since she is very good, this worked well too.

>

> It is difficult to know how to comment about what Park wants to do that

you

> are worried about. In general, it is important to let our OCDers take

> risks and to try the things they want to do as this sends them a very

> important message. They learn that we believe in them and their ability

to

> pick themselves up after they are knocked down and get back on track. If

> we act anxious and are very protective, we unwittingly reinforce their

> anxiety. Anxiety is so contagious! Having said that, if he wants to go

> bungee jumping with an unsafe cord, don't let him do it (or anything like

> that) <VBG>. We find it is particularly important in dealing with an

OCDer

> with perfectionism issues, to let him mess up and keep showing him our

love

> and commitment, it is a form of E & RP.

>

> The hard part is how to handle your own feelings while this is going on.

I

> distract myself and hope things don't blow up too much. Also I realize

> that some of this is my own GAD and I focus on working on that.

>

> Good luck, take care, aloha, Kathy (H)

> kathyh@...

>

> At 12:35 AM 10/13/2000 -0000, you wrote:

> >Hi all! I need to vent! had an allergic reaction to Zoloft-

> >body is covered in a rash-he has been on this med for a little over 2

> >weeks. Ugh! I am having a hard time finding a therapist for him, he

> >(Park) wants a man, so I have talked with several, they all tell me

> >different things, he doesnt need CBT he needs ERP or BT-what does

> >that mean I thought they all are similiar.UGH again! Then they seeem

> >surprised that OCD is the only thing that has been diagnosed. Ok that

> >makes me question my Dr. This all is so confusing, I want to scream

> >and cry-which I have been doing most of today!

> >On a different note, let me ask this: Park wants to do something that

> >I know will be stressful for him, and right now he doesnt realize

> >that. What do I do? Do I let him make his own decision or do I jump

> >in and say no. Do I protect him from obvious stressful situations? I

> >know that therapy will help with these questions, but until our appt

> >what do I do? By the way I decided on BT treatment. We are telling

> >Park about OCD tomorrow (Friday). Then maybe he will have some relief

> >knowing things are not his doing. I dont know how well he will

> >understand this, OCD along with the depression is all that he has

> >known during his 7 years. We believe he has had this since age 1

> >maybe before. He is so sad and angry all the time, it really makes me

> >upset that he says he doesnt know what being happy feels like.

> >Thank you for letting me vent! This probably didnt make a lot of

> >sense but I have 1001 thoughts running thru my mind, and I'm slowly

> >letting them out-all jumbled up of course!

>

>

>

>

> You may subscribe to the OCD-L by emailing listserv@... . In

the body of your message write: subscribe OCD-L your name. You may

subscribe to the Parents of Adults with OCD List at

parentsofadultswithOCD . You may access the

files, links, and archives for our list at

. Our list advisors are Tamar

Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are

Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Roman, and

Jackie Stout. Subscription issues, problems, or suggestions may be

addressed to Louis Harkins, list owner, at harkins@... .

>

>

>

[Guest guest]

HI Terry:

What is doing and saying is a very normal response to the situation

he is in. With Dr. Hat you have a fantastic doc and you can leave it up to

him to work with and get him to recognize that he is responsible for

working on his OCD even though it is hard work.

In your position for now, I would let blame everything on OCD and

not pressure him too much. It is not at all unusual for stress to increase

quite markedly when our kids begin CBT. Also OCD is very cruel and is

capable of interfering with practically everything they are doing. So it

is quite possible that is right that the things upsetting you have

an OCD component.

Have you discussed this with Dr. Hat? If not, please contact him right

away and get his advice about how to help . When our kids are ruled

by anxiety, we can help by reducing our expectations (this is hard I know),

and by staying calm and providing a consistent and supportive environment.

Just because may not be able to react and manage his anxiety as well

as before, does not mean he will not be able to get these skills back into

fine working order when he has recovered from his OCD. For now he is going

through a tough patch and you need to pick your battles.

Have you read Dr. Ross Greene's book, " The Explosive Child? " It gives an

excellent description about how to pick your battles. When Steve was in

his early days of learning how to live with OCD, we only worried about

safety issues and we tried to keep our family life very, very simple with

as few other changes as possible.

Are you getting any time for yourself? As hard as it is, going for a walk,

listening to some good music, or some other simple enjoyable me time, can

really help us deal with this incredible stress.

I had to develop a plan to manage my own behavior in dealing with Steve and

his difficult behaviors. Giving myself permission to take a time out when

I could not handle really helped me to deal with my frustration and calm

down when I lost it. Sometimes I had to rely on other family members to

kindly point out to me that I was making the situation worse and they would

take care of things for a while while I regrouped.

What seemed to help Steve was for me to stay around where he was but not to

engage in conversation or even non-verbal stuff too much. It was a bit how

little kids do parallel play. Is there something can enjoy that you

can do together with him? Some of us have found board games very helpful.

Good luck, take care, aloha, Kathy (H)

kathyh@...

At 10:32 AM 10/13/2000 -0700, you wrote:

>Hi Kathy,

>Here's a question I have. My son understands that he has OCD. Everything

>he does he blames on the OCD. Anything I correct or criticize he blames on

>the ocd.So everything I comment on he yells at me that it's the ocd and he

>can't help it and I shouldn't yell at him. I get so frustrated though.

>Sometimes I just can't stand it. Sometimes I can't even talk to him because

>he gets so anxious because it's the ocd and not him. I am at my wit's end.

>He has seen Dr. Hat 3 times but I realize that's barely scratching the

>surface.

>Any suggestions?

>Terry

[Guest guest]

Hi Kathy,

You have mixed up someone else's with my . LOL

Thanks for your advice. I'll heed it.

Terry

Re: Just Venting

> HI Terry:

>

> What is doing and saying is a very normal response to the situation

> he is in. With Dr. Hat you have a fantastic doc and you can leave it up

to

> him to work with and get him to recognize that he is responsible

for

> working on his OCD even though it is hard work.

>

> In your position for now, I would let blame everything on OCD and

> not pressure him too much. It is not at all unusual for stress to

increase

> quite markedly when our kids begin CBT. Also OCD is very cruel and is

> capable of interfering with practically everything they are doing. So it

> is quite possible that is right that the things upsetting you have

> an OCD component.

>

> Have you discussed this with Dr. Hat? If not, please contact him right

> away and get his advice about how to help . When our kids are ruled

> by anxiety, we can help by reducing our expectations (this is hard I

know),

> and by staying calm and providing a consistent and supportive environment.

> Just because may not be able to react and manage his anxiety as

well

> as before, does not mean he will not be able to get these skills back into

> fine working order when he has recovered from his OCD. For now he is

going

> through a tough patch and you need to pick your battles.

>

> Have you read Dr. Ross Greene's book, " The Explosive Child? " It gives an

> excellent description about how to pick your battles. When Steve was in

> his early days of learning how to live with OCD, we only worried about

> safety issues and we tried to keep our family life very, very simple with

> as few other changes as possible.

>

> Are you getting any time for yourself? As hard as it is, going for a

walk,

> listening to some good music, or some other simple enjoyable me time, can

> really help us deal with this incredible stress.

>

> I had to develop a plan to manage my own behavior in dealing with Steve

and

> his difficult behaviors. Giving myself permission to take a time out when

> I could not handle really helped me to deal with my frustration and calm

> down when I lost it. Sometimes I had to rely on other family members to

> kindly point out to me that I was making the situation worse and they

would

> take care of things for a while while I regrouped.

>

> What seemed to help Steve was for me to stay around where he was but not

to

> engage in conversation or even non-verbal stuff too much. It was a bit

how

> little kids do parallel play. Is there something can enjoy that

you

> can do together with him? Some of us have found board games very helpful.

>

> Good luck, take care, aloha, Kathy (H)

> kathyh@...

>

> At 10:32 AM 10/13/2000 -0700, you wrote:

> >Hi Kathy,

> >Here's a question I have. My son understands that he has OCD.

Everything

> >he does he blames on the OCD. Anything I correct or criticize he blames

on

> >the ocd.So everything I comment on he yells at me that it's the ocd and

he

> >can't help it and I shouldn't yell at him. I get so frustrated though.

> >Sometimes I just can't stand it. Sometimes I can't even talk to him

because

> >he gets so anxious because it's the ocd and not him. I am at my wit's

end.

> >He has seen Dr. Hat 3 times but I realize that's barely scratching the

> >surface.

> >Any suggestions?

> >Terry

>

>

>

>

> You may subscribe to the OCD-L by emailing listserv@... . In

the body of your message write: subscribe OCD-L your name. You may

subscribe to the Parents of Adults with OCD List at

parentsofadultswithOCD . You may access the

files, links, and archives for our list at

. Our list advisors are Tamar

Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are

Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Roman, and

Jackie Stout. Subscription issues, problems, or suggestions may be

addressed to Louis Harkins, list owner, at harkins@... .

>

>

>

[Guest guest]

HI Terry:

Sorry for the faux pas. Sorry too to 's parents. Hope you are

all doing okay in spite of my confusion.... Take care, aloha, Kathy

At 08:14 PM 10/13/2000 -0700, you wrote:

>Hi Kathy,

>You have mixed up someone else's with my . LOL

>Thanks for your advice. I'll heed it.

>Terry

[Guest guest]

At 09:34 PM 10/13/00 -0700, you wrote:

>I think you're still confused. LOL. I'm 's mom. Someone else

>is 's mom. We're all in the same boat though so it doesn't really

>matter.

>Terry

I have been wishing for a large map of the world with all your names &

corresponding children clearly marked... I am always impressed by the way

y'all usually have everyone sorted out :-)

-- Vicki in Montana

[Guest guest]

I think you're still confused. LOL. I'm 's mom. Someone else

is 's mom. We're all in the same boat though so it doesn't really

matter.

Terry

Re: Just Venting

> HI Terry:

>

> Sorry for the faux pas. Sorry too to 's parents. Hope you are

> all doing okay in spite of my confusion.... Take care, aloha, Kathy

>

> At 08:14 PM 10/13/2000 -0700, you wrote:

> >Hi Kathy,

> >You have mixed up someone else's with my . LOL

> >Thanks for your advice. I'll heed it.

> >Terry

>

>

>

>

> You may subscribe to the OCD-L by emailing listserv@... . In

the body of your message write: subscribe OCD-L your name. You may

subscribe to the Parents of Adults with OCD List at

parentsofadultswithOCD . You may access the

files, links, and archives for our list at

. Our list advisors are Tamar

Chansky, Ph.D., and Aureen Pinto Wagner, Ph.D. Our list moderators are

Birkhan, Kathy Hammes, Jule Monnens, Gail Pesses, Roman, and

Jackie Stout. Subscription issues, problems, or suggestions may be

addressed to Louis Harkins, list owner, at harkins@... .

>

>

>

[Guest guest]

HI Terry:

You sure are right about that <VBG> is lucky to have you for

his mom. Steve has noticed my senior moments and told me that he cannot

remind me of something when I ask twice and say I have forgotten. He just

tells me he won't participate in my OCD either!

Hope has a great weekend. Take care, aloha, Kathy

At 09:34 PM 10/13/2000 -0700, you wrote:

>I think you're still confused. LOL. I'm 's mom. Someone else

>is 's mom. We're all in the same boat though so it doesn't really

>matter.

>Terry

>

[Guest guest]

Hi cindy, <cjoye16@...>

I would remind the staff in a note that the pet was a surprise part of the

program and not part of their behavioural modifications techniques since

your son didnt even know about it!

Being the kind of person that I am, I would show up at the school with the

pet and when I feel like it to surprise the whole bunch of them!! AND when

they complain that this is inconvenient and disruptive, I would suggest that

they consider themselves and their actions before they pass judgements on

others! OH - and then I would give them a jar of sweets as a good will

gesture. Keep them guessing, eh?!

, I too am very tired of people in authority making decisions that

just dont make sense!

take care, wendy, in canada

_________________________________________________________________________

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[Guest guest]

Hi , what a disappointment for your son not to have his guinea pig come

to class as expected. I agree it is unfair to abruptly pull his All Star

honor due to behavior, if being chosen an All Star isn't a reward for good

behavior to begin with.

My suggestion is to tell the teacher what you have told the list: the

reasons you felt her last-minute decision to deny the pig's visit was a poor

one, and why you were upset by it, why it was not in your son's best

interest overall. If you simply refuse to bring the pig at all, the teacher

will have no opportunity to understand your reasons, or take your concerns

into account " the next time. " Since you have been supportive of her on

behavior issues before, I bet the teacher will be open to hearing your input

about this particular situation.

We had a similar situation the year Kellen was in preschool. She had had an

abrupt onset of OCD symptoms on December 8 that year, the week winter break

started. Due to bad weather and several school closings, Kel did not return

to school for over a month, but now with full-blown OCD and just starting on

Prozac. I mention all this to be fair to the teacher; Kellen was not the

same child who had left for winter break, and her behavior was impulsive and

out of character.

Long story short, this teacher and I became mortal enemies: she thought me

a hysterical Mom hung up on requesting unfair advantages for her daughter,

and I thought her a cruel woman intent on punishing away my daughter's

symptoms. Kellen was shut out of special class activities and punished in

other ways for ticcing, for being restless and unable to sit still when

asked, for repeating phrases and bothering others, and so on. This

situation was resolved only by the end of the school year finally arriving!

I debated monthly with myself the pros and cons of pulling Kel from

preschool.

I learned from that experience that like it or not, I needed to work calmly

and rationally with adults who interact with my daughter. With the two

teachers Kel has had since, I have tried hard to " kill them with kindness "

and persuade them to deal with Kel's OCD in a helpful way for their own

benefit. My (short) experience has been, teachers tend to focus on the

behavior at hand and not consider the long view such as overall progress by

the child, etc. Pointing this out can help a teacher see the general

positive trend and put a few bad days into perspective.

Let us know what you end up doing, and how things work out.

Kathy R. in Indiana

----- Original Message -----

From: " Joye " <cjoye16@...>

> For the most part the school my son attends has been

> fairly good about his needs and accomodations due to

> his OCD and AD/HD. He has been doing much better this

> year and has actually been in his clasroom (as opposed

> to the special ed room 90% of the time in first grade

> last year). I usually have no problem in backing them

> up when there has been a problem with his behaviour.

> Today is a different story! This week my son was the

> class " ALL STAR " . He was supposed to be able to bring

> in two things from home to share with his class. He

> asked me to bring his baby guinea pig. I checked with

> the teacher and we came up with a time that was

> supposed to be a surprise as Tommy has a hard time

> waiting for things he is excited about. I got a phone

> message on my recorder just minutes before leaving for

> the school that his behaviour had deteriorated and

> consequently the " piggie " could not come in today! It

> was my understanding that bringing in the " piggie " was

> part of his ALL STAR week and not a reward for good

> behaviour. This does not jive with what we are

> supposed to be doing to help this child! I have now

> been told that I can bring in the " piggie " tomorrow,

> but only if my son does his work and exhibits good

> behaviour. He will need to control himself until

> 12:20PM. For him, just thinking about his piggie

> coming to school is enough to cause sticky thoughts

> and brain lock! It probably is enough to make his

> Concerta not work too! AM I SEETHING ABOUT THIS??? I

> am on the verge of refusing to bring the piggie in at

> all tomorrow, irregardless of his behaviour. If I

> decide to be " non compliant " with the teachers wishes

> I will have a talk with my son beforehand so that he

> knows of my decision and the reasons for it. I just

> had to get this out of myself before I exploded!!!

> BTW, I am sure that someone out there has had similar

> problems. I welcome hearing about how they were

> resolved. Thanks,

[Guest guest]

Thank you for your response, Kathy. I did end up

bringing the Piggies to his class today, only after

talking to both the classroom teacher and the special

ed teacher(who for some reason did not think that I

was backing them up!) During these phone conversations

it came to light that we were missing some very

important pieces of information surrounding the All

Star of the Week. Tommy is not very dependable about

giving us information about what he does at school,

even when he is asked pointed questions...hence I had

no idea that the expectation of the 'ALL Star " was

that they have exemplary behaviour! The parent packet

that the teacher gave out only said that the children

were selected by random. I did not know that he was

to be line leader all week and there would be other

responsibilities. My son had even requested that the

school psychologist be there to see his piggie and I

thought she was in the room when we got there because

my son had done something else wrong!!! Fortunately, I

have enough moxie to ask a lot of questions and it

appears that we have worked things out. My sons

paraprofessional is supposed to write down more

information for me, on a daily basis, making certain I

know what is going on. I then will be better

positioned to be supportive of these types of

situations in the future. Thanks for being there for

me to spout off to! --- Kathy

<klr@...> wrote:

> Hi , what a disappointment for your son not to

> have his guinea pig come

> to class as expected. I agree it is unfair to

> abruptly pull his All Star

> honor due to behavior, if being chosen an All Star

> isn't a reward for good

> behavior to begin with.

>

> My suggestion is to tell the teacher what you have

> told the list: the

> reasons you felt her last-minute decision to deny

> the pig's visit was a poor

> one, and why you were upset by it, why it was not in

> your son's best

> interest overall. If you simply refuse to bring the

> pig at all, the teacher

> will have no opportunity to understand your reasons,

> or take your concerns

> into account " the next time. " Since you have been

> supportive of her on

> behavior issues before, I bet the teacher will be

> open to hearing your input

> about this particular situation.

>

> We had a similar situation the year Kellen was in

> preschool. She had had an

> abrupt onset of OCD symptoms on December 8 that

> year, the week winter break

> started. Due to bad weather and several school

> closings, Kel did not return

> to school for over a month, but now with full-blown

> OCD and just starting on

> Prozac. I mention all this to be fair to the

> teacher; Kellen was not the

> same child who had left for winter break, and her

> behavior was impulsive and

> out of character.

>

> Long story short, this teacher and I became mortal

> enemies: she thought me

> a hysterical Mom hung up on requesting unfair

> advantages for her daughter,

> and I thought her a cruel woman intent on punishing

> away my daughter's

> symptoms. Kellen was shut out of special class

> activities and punished in

> other ways for ticcing, for being restless and

> unable to sit still when

> asked, for repeating phrases and bothering others,

> and so on. This

> situation was resolved only by the end of the school

> year finally arriving!

> I debated monthly with myself the pros and cons of

> pulling Kel from

> preschool.

>

> I learned from that experience that like it or not,

> I needed to work calmly

> and rationally with adults who interact with my

> daughter. With the two

> teachers Kel has had since, I have tried hard to

> " kill them with kindness "

> and persuade them to deal with Kel's OCD in a

> helpful way for their own

> benefit. My (short) experience has been, teachers

> tend to focus on the

> behavior at hand and not consider the long view such

> as overall progress by

> the child, etc. Pointing this out can help a

> teacher see the general

> positive trend and put a few bad days into

> perspective.

>

> Let us know what you end up doing, and how things

> work out.

>

> Kathy R. in Indiana

>

>

> ----- Original Message -----

> From: " Joye " <cjoye16@...>

>

> > For the most part the school my son attends has

> been

> > fairly good about his needs and accomodations due

> to

> > his OCD and AD/HD. He has been doing much better

> this

> > year and has actually been in his clasroom (as

> opposed

> > to the special ed room 90% of the time in first

> grade

> > last year). I usually have no problem in backing

> them

> > up when there has been a problem with his

> behaviour.

> > Today is a different story! This week my son was

> the

> > class " ALL STAR " . He was supposed to be able to

> bring

> > in two things from home to share with his class.

> He

> > asked me to bring his baby guinea pig. I checked

> with

> > the teacher and we came up with a time that was

> > supposed to be a surprise as Tommy has a hard time

> > waiting for things he is excited about. I got a

> phone

> > message on my recorder just minutes before leaving

> for

> > the school that his behaviour had deteriorated and

> > consequently the " piggie " could not come in today!

> It

> > was my understanding that bringing in the " piggie "

> was

> > part of his ALL STAR week and not a reward for

> good

> > behaviour. This does not jive with what we are

> > supposed to be doing to help this child! I have

> now

> > been told that I can bring in the " piggie "

> tomorrow,

> > but only if my son does his work and exhibits good

> > behaviour. He will need to control himself until

> > 12:20PM. For him, just thinking about his piggie

> > coming to school is enough to cause sticky

> thoughts

> > and brain lock! It probably is enough to make his

> > Concerta not work too! AM I SEETHING ABOUT

> THIS??? I

> > am on the verge of refusing to bring the piggie in

> at

> > all tomorrow, irregardless of his behaviour. If I

> > decide to be " non compliant " with the teachers

> wishes

> > I will have a talk with my son beforehand so that

> he

> > knows of my decision and the reasons for it. I

> just

> > had to get this out of myself before I exploded!!!

> > BTW, I am sure that someone out there has had

> similar

> > problems. I welcome hearing about how they were

> > resolved. Thanks,

>

>

>

__________________________________________________

[Guest guest]

Hi, I read your message. You are right! The teacher should not have

taken away the opportunity for your son to share. I am a teacher and

I make mistakes. I recommend that you make an appointment with the

teacher and come to agreement about what kinds of consequences are

appropriate for your son's behavior, as long as the expected behavior

fits his goals. You can share your feelings with the teacher without

blaming her/him, then you and the teacher can try to work together.

I hope this is helpful. It's so hard to watch our kids try hard and

then be defeated. It is also really hard to be a teacher and try to

deal with so many kids at the same time. Note, I'm a parent of a

child with OCD as well. - Maureen

[Guest guest]

Hi , I was glad to read that this " piggie " situation was resolved and

had a happy ending! I like the idea of receiving detailed information each

day, I think that will be very helpful to keep you and the teacher on the

same track. My daughter doesn't have a paraprofessional and I'm wondering

how I can set something similar up--she is awful about bringing information

home, certainly never the full story, so I can empathize.

Kathy R. in Indiana

----- Original Message -----

From: " Joye " <cjoye16@...>

> Thank you for your response, Kathy. I did end up

> bringing the Piggies to his class today, only after

> talking to both the classroom teacher and the special

> ed teacher(who for some reason did not think that I

> was backing them up!) During these phone conversations

> it came to light that we were missing some very

> important pieces of information surrounding the All

> Star of the Week. Tommy is not very dependable about

> giving us information about what he does at school,

> even when he is asked pointed questions...hence I had

> no idea that the expectation of the 'ALL Star " was

> that they have exemplary behaviour! The parent packet

> that the teacher gave out only said that the children

> were selected by random. I did not know that he was

> to be line leader all week and there would be other

> responsibilities. My son had even requested that the

> school psychologist be there to see his piggie and I

> thought she was in the room when we got there because

> my son had done something else wrong!!! Fortunately, I

> have enough moxie to ask a lot of questions and it

> appears that we have worked things out. My sons

> paraprofessional is supposed to write down more

> information for me, on a daily basis, making certain I

> know what is going on. I then will be better

> positioned to be supportive of these types of

> situations in the future. Thanks for being there for

> me to spout off to!

[Guest guest]

NAncy.

Venting is good, I would be upset also. Good Luck SHU

[Guest guest]

Kathy, I apologize for not responding sooner, we were

busy here with Halloween and my husbands birthday back

to back....I am just now getting to the mail from the

list from last weekend. My son has severe AD/HD along

with his OCD and depression. When he went to

Kindergarten 2 years ago they had trouble keeping him

in the classroom, let alone keeping him seated, on

task and participating. I went through a several

months long process of trying to inform the school

district that this particular accommodation was not

unheard of for children with these disabilities, but

because Section 504 is vague on this issue(and

unfunded!!!)they approached me saying that he

qualified for Special Education services. I did not

have much problem with that except they wanted me to

put him under SED category!! Thank God we had such an

patient, gifted and humble classroom teacher that

year! I explained to him that I needed his patience

with this process as I could not bring myself to put

my son under that category unless he really belonged

there! The teacher agreed, so I embarked on another

quest to find out where my son really belonged in

order to get the services he needed! I spoke to the

State office of Special Education enforcement and they

forwarded me information telling me that my son

belonged under the Other Health Impaired category!!!

The school district then realized that they were not

completely up to speed with these laws and promptly

changed the paperwork, which I signed, and he has had

a full time aide ever since then. Things have been

less than idyllic, but we always seem to work through

things with my sons best interests at heart. I was

the only parent this school district has had who ever

questioned them on these issues!! I still find that

incredible, but I seem to run into these types of

things regularly! We have a Home/school communication

book we use as well as a period by period sheet that

the aide reports on for IEP tracking purposes that I

get a copy of daily/weekly. It really helps with a

lot of issues. Sorry this is long - hope it helps!

--- Kathy <klr@...> wrote:

> Hi , I was glad to read that this " piggie "

> situation was resolved and

> had a happy ending! I like the idea of receiving

> detailed information each

> day, I think that will be very helpful to keep you

> and the teacher on the

> same track. My daughter doesn't have a

> paraprofessional and I'm wondering

> how I can set something similar up--she is awful

> about bringing information

> home, certainly never the full story, so I can

> empathize.

>

> Kathy R. in Indiana

>

> ----- Original Message -----

> From: " Joye " <cjoye16@...>

>

> > Thank you for your response, Kathy. I did end up

> > bringing the Piggies to his class today, only

> after

> > talking to both the classroom teacher and the

> special

> > ed teacher(who for some reason did not think that

> I

> > was backing them up!) During these phone

> conversations

> > it came to light that we were missing some very

> > important pieces of information surrounding the

> All

> > Star of the Week. Tommy is not very dependable

> about

> > giving us information about what he does at

> school,

> > even when he is asked pointed questions...hence I

> had

> > no idea that the expectation of the 'ALL Star " was

> > that they have exemplary behaviour! The parent

> packet

> > that the teacher gave out only said that the

> children

> > were selected by random. I did not know that he

> was

> > to be line leader all week and there would be

> other

> > responsibilities. My son had even requested that

> the

> > school psychologist be there to see his piggie and

> I

> > thought she was in the room when we got there

> because

> > my son had done something else wrong!!!

> Fortunately, I

> > have enough moxie to ask a lot of questions and it

> > appears that we have worked things out. My sons

> > paraprofessional is supposed to write down more

> > information for me, on a daily basis, making

> certain I

> > know what is going on. I then will be better

> > positioned to be supportive of these types of

> > situations in the future. Thanks for being there

> for

> > me to spout off to!

>

>

__________________________________________________

[Guest guest]

had bad teeth due to iron drops and the dr didnt tell me how to

treat the teeth at the age of 3 she had to have 2 teeth pulled due to

abcesses the teeth broke off i took her to our family dentist for this

after that he refused to see her because she was scared and kicked the tar

out of him

i called the childrens hospital and they gave me a name of a special dentist

our dentist said all her teeth needed to be out she was on antibotics for a

year due to the teeth once this dentist seen her she was taken to the

hospital

done surgery to take the teeth out this dentist was GREAT she sees ALOT of

kids

now melissa will only see her she seen our dentist one time since but that

was cause her dentist is farther away our dentist looked at her and said

whats the problem kicker lolol she said get this tooth out fast its driveing

me crazy he xrayed it and said ok its hanging and you will not know its out

lolol she held on to the arm rests and he said 1 2 3 dang here it is

lololol it was out and she couldnt believe it and jumped up and hugged him

lololol but he said you kep going to your regular dentist ok and when you

are a adult come see me lololol

the reason this dentist did this is because he was good but some kids

dentist can see need special dentists and ped dentist specialize in

children

and they have a better compassion for kids right now melissas teeth are all

straight

and has never had another cavity since shes been with this special dentist

lololol

maybe thats why this dentist did that but if the tooth gets to hurting her

PLEASE call the dentist and tell them JRA kids are checked more often

the teeth need calcium if your giveing her iron supplement ask the dentist

if this could cause it or if she needs more calcium also teeth are

inherited also

Robbin

[Guest guest]

my famly just dont understand what it feels like to wake up everyday with

horrible pain and the struggle it is just to get up out of bed.

i get so depressed remembering all the things i use to be able to do before a

tiny poppy seed size insect took it all away.

my children are so dear to me but because i am always asking them to

understand that i am sick and can not do the things(simple things) they ask

of me i feel that they are getting fed up with me and rather not be around

me. they are so young still 8 and 13........but yet they have to do most

everything for themseles....because i can not and my husband's buisness keeps

him working late everynight.

i fight the pain everyday and do what i can and when i have a " good day " i

plan to do whatever my boys want to..........but they are so use to doing

their own thing they dont want to do anything with me thay rather be with

their friends..........it hurts so much when this happens but i try and

understand their view...........my little one tells me...... " why should we do

anything with you cause your just gunna get tired anyway and then all our

friends are out "

i use to be the one organizing everything.......all their friends would be in

our yard...we would play baseball and whatever...i was the one out there

playing with them running the bases and stuff....making snacks for them

..........having pool parties....parties in the house....going to the

movies...mall...art centers....bike riding...oh! just everything with

them...now i lay on my couch and watch them from the window.....watching my

children grow up without me!!!!!!!!!!!!!

i try so hard to get that life back but then i am out of it trying to

recuperate for a week or two...........

i grew up without my mother because of death my children are growing up

without a mother because of a TICK!!!!!!!!!!!!!!!!!!!

my husband takes vacation soon .......he wants to take us to

florida...........i am going because how can i tell me children i can

not.......i am so afraid of ruining the trip...........every time we talk

about it me children get angry and say.... " but what is SHE gunna do,SHE is

always tired and sick,....well SHE should just stay home.......

well I am going and I will find the strength to make this trip FUN and

EXCITING no matter what!!!!!!!!!!!!!!!!!!!!!!! i figure i will just have to

take medicine for the pain and swallow some diets pills(not for weight loss

of course but for the matabolizing effect)

i did this once before for a weekend......it did work....but i sure paid for

it..........

well thank you for listening ...........

i know there are many of you who suffer and i am so sorry for you.......

please be WELL............

sue...advocate for lyme

[Guest guest]

Sue,

I am feeling the same as you except I do not have children (I am 24). I feel

like such a loser b/c everyone is working and getting on with their lives and

I am stuck here in front of my computer or in front of the boob toob doing

mindless things. I wanted more out of life! I still do and I am DETERMINED

to get back to the way I was even if I have to get there kicking and

screaming!! My younger brother Mikey was just diagnosed with a positive

test...he was bitten back in 9/99 we actually picked the tick out ourselves

from the rash on his ankle...then he had the flu for 3 months. I tried to

tell him that he had lyme but OH NO!!! NOT HIM!!! well, uh, yeah. Now, 1.5

years later he is SICK WITH IT!!!! And his HMO is HIP and they SUCK! So now

we are in the same boat except I am coinfected am feel much worse. I hope he

gets better faster. At least he has a sister, and an advocate...I had no

one. I am healing, but it is taking a very long time and the lyme is putting

me to the test of endurance, patience and faith. I will prevail....but I

will complain and freak out on the way.

I am sorry for rambling...I am getting over a majorly disturbing herx packed

with panic attacks, tremors, chills, and freaked out emotions. On my bedroom

door I posted an " ENTER AT YOUR OWN RISK " sign....hee hee hee

Take care,

Debbie

Brooklyn

[Guest guest]

I'm sorry to hear about the problems you and your daughter are having.

Like Systemic JRA isn't enough. My daughter is 13, and we are still

trying to get this horrid disease under control. It is controlling our

lives and has been for 6 months now. Although her pain is under control

for the most part, we live with the side effects from meds and all the

other things that come with the disease, including how simple illnesses

are exaggerated. You are right, people don't understand, and they

couldn't unless they truly walked in our shoes just one day!!

God bless and keep your chin up!!

Smiles :-)

Dayna Drennan

just venting

my daughter has systemic JRA, she just broke out with blisters all

over her face, not related, well somewhat........

she was exposed to strep throat, contrated it, and no, she had no

sore throat, she didn't feel sick, she is on Naprosyn around the

clock. She developed impetigo after a runny nose and it just spread

like wild fire. It throws me off guard sometimes, Im always

checking to make sure she is not fatigued, or limping or any other

sign of a flare coming and I forget about the everyday sick stuff

that kids get.

And no one understands, they just kind of look at you and come up

with some story about when they had strep and the horrendous sore

throat they had and then make some type of comment to make you feel

like you just send your kid to school sick.

For links to websites about arthritis and JRA, visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

hang in there - our thoughts are with you. parents of children without JRT

don't understand how different even a normal illness can be on our children. I

hope she feels better soon and has no flare.

Val

Rob's Mom (3, systemic)

In a message dated Tue, 25 Sep 2001 4:59:57 PM Eastern Daylight Time,

contessa123992000@... writes:

> my daughter has systemic JRA, she just broke out with blisters all

> over her face, not related, well somewhat........

>

> she was exposed to strep throat, contrated it, and no, she had no

> sore throat, she didn't feel sick, she is on Naprosyn around the

> clock. She developed impetigo after a runny nose and it just spread

> like wild fire. It throws me off guard sometimes, Im always

> checking to make sure she is not fatigued, or limping or any other

> sign of a flare coming and I forget about the everyday sick stuff

> that kids get.

>

> And no one understands, they just kind of look at you and come up

> with some story about when they had strep and the horrendous sore

> throat they had and then make some type of comment to make you feel

> like you just send your kid to school sick.

>

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Sorry to hear your daughter is sick. Are you sure it is impetigo and not

scarlet fever? That also looks like a rash and spreads all over the body.

Eventually the skin peels off. Believe me I know because my daughter always

got scarlet fever when she got strep. Until her tonsills were taken out, she

got it every 4 to 6 weeks.It was 10 months of almost constant sickness and

various anitbiotics. She first got it from my nephew and the only symptom he

had was the rash - no sore throat. Just wanted to let you know that some

people do understand. I would think you should make sure it is not scarlet

fever; if so she needs antibiotics. Just my opinion! Michele

just venting

my daughter has systemic JRA, she just broke out with blisters all

over her face, not related, well somewhat........

she was exposed to strep throat, contrated it, and no, she had no

sore throat, she didn't feel sick, she is on Naprosyn around the

clock. She developed impetigo after a runny nose and it just spread

like wild fire. It throws me off guard sometimes, Im always

checking to make sure she is not fatigued, or limping or any other

sign of a flare coming and I forget about the everyday sick stuff

that kids get.

And no one understands, they just kind of look at you and come up

with some story about when they had strep and the horrendous sore

throat they had and then make some type of comment to make you feel

like you just send your kid to school sick.

For links to websites about arthritis and JRA, visit:

http://www.geocities.com/Heartland/Village/8414/Links.html

[Guest guest]

her primary doc put her on Ceclor, and her face looks really good

now, I think that it will be totally clear in a few days. The

impetigo is almost completely gone.

Thanks for the support, I was having a bad day and just needed to let

off some steam. Amy has had systemic JRA now for almost 4 years, her

last flare being two years ago, but still on a boatload of

medications.

She is on Methotrexate, Naprosyn, Folic Acid, multi-vitamin and

Enbrel.

She developed an allergy to Enbrel, but I still have to give it to

her along with Benedryl to counter act the allergic reaction. How I

hate giving her those injections, knowing she will react to it.

> Sorry to hear your daughter is sick. Are you sure it is impetigo

and not

> scarlet fever? That also looks like a rash and spreads all over the

body.

> Eventually the skin peels off. Believe me I know because my

daughter always

> got scarlet fever when she got strep. Until her tonsills were taken

out, she

> got it every 4 to 6 weeks.It was 10 months of almost constant

sickness and

> various anitbiotics. She first got it from my nephew and the only

symptom he

> had was the rash - no sore throat. Just wanted to let you know that

some

> people do understand. I would think you should make sure it is not

scarlet

> fever; if so she needs antibiotics. Just my opinion! Michele

>

> just venting

>

>

> my daughter has systemic JRA, she just broke out with blisters all

> over her face, not related, well somewhat........

>

> she was exposed to strep throat, contrated it, and no, she had no

> sore throat, she didn't feel sick, she is on Naprosyn around the

> clock. She developed impetigo after a runny nose and it just

spread

> like wild fire. It throws me off guard sometimes, Im always

> checking to make sure she is not fatigued, or limping or any other

> sign of a flare coming and I forget about the everyday sick stuff

> that kids get.

>

> And no one understands, they just kind of look at you and come up

> with some story about when they had strep and the horrendous sore

> throat they had and then make some type of comment to make you feel

> like you just send your kid to school sick.

>

>

>

> For links to websites about arthritis and JRA, visit:

> http://www.geocities.com/Heartland/Village/8414/Links.html

>

>

[Guest guest]

Hi Pam,

I'm sorry to hear le is not feeling well. It seems like even the

common cold can get these kids down more so than usual. has had

a cold, and little things here and there, but for the most part has been

doing ok. She just gets real tired from school. It takes a lot out of

her. I called the pediatric rhuemy on call last night because out of

nowhere, her face, thighs and spots on her back were red and very warm,

not like a rash, just red and hot. He advised me not to give her Enbrel

and to follow up with her doctor today. We watched her temperature and

it stayed around 98 so that was good because we thought she might be

spiking a fever. He was thinking it could also possibly be an allergic

reaction to something she is taking although there haven't been any

changes to meds in awhile. The only thing that changed was we added

more cyclosporine to the mix. We often see the red cheeks and associate

that with the prednisone but this was more intense and not just on the

face.

Anyway, I'm calling the doctor today and talking with them about that,

and headaches and stomach aches. All have become more frequent in the

last week or two. Zantac isn't cutting it for stomach aches lately.

This is ending up way longer than I intended..... Please tell le

we are pulling for her and when she gets a chance to say hello through

the steroteen site.

Smiles :-)

Dayna & (13, Systemic)

just venting

I can really relate to your situation. le has been home for

almost two

weeks. No one can decide if its virus, infection, or flare. Ending up

looking most like a virus turned into a sinus infection. I was kind of

prepared for it, everyone on the JRA-LIST has been saying that fall is a

bad

time. This is her first year with the diagnosis.

The school is being pretty good about the time she missed. They are

sending

some homework home and one teacher (computer art) called her and said

not to

worry about anything until she was able to return. She was concerned

that

her hands were in pain. Ain't that the nicest.

My family is very supportive, too. They take her to doctor

appointments,

hospital treatments and come stay with her when I am at work and always

call

to see how she is doing.

Her cousin lives with me and she is very helpful. She will get things

for

her and try to get her thinking about something else. They are in the

same

grade and yesterday she brought home a get well card signed by some

school

friends. It really seemed to turn things around for her.

I meet people all over the place that have children or friend's with

children

with JRA. Sadly for me, le always has it the worse. I don't like

that, but I count my blessing and move on.

I make sure that everyone knows what le has; I print a description

about her illness and give it to people to read. Family, friends,

teachers;

even my employer. I also have a letter of introduction for all of her

teachers to read (she's in High School), it tells what she has gone

through

and meds and what she is doing now. It really has helped to let them

know

that she is very special.

Just thought I'd share that with you. It isn't easy to handle

sometimes, but

I do everything I can to solicit support.

Pam Brockett

For links to websites about arthritis and JRA, visit:

http://www.geocities.com/Heartland/Village/8414/Links.html