Re: Roxanna

[Guest guest]

<<<<<< Roxanna though I have only

> been on here for a few months I agree with Kathy and appreicate all that

you

> do! It amazes me sometimes how patient you are in repeating so much of

the

> same info over and over again as each new member joins. I was not aware

> until Fania mentioned about you started the list that that was the case.

You

> have been very dedicated. I have benefited greatly from many of your

posts

> and links etc. I have not posted as much these last two weeks or so as

right

> now I am very tired but have been very busy and involved and have had a

busy.............>>

Hey, Rox !! Are you printing all of these posts ??? you should !! put them

in your resume file !!!!!!!!!!!!!!!

FAnia :-)

[Guest guest]

In a message dated 3/20/03 5:48:00 PM Eastern Standard Time,

beitchazen@... writes:

> Hey, Rox !! Are you printing all of these posts ??? you should !! put them

> in your resume file !!!!!!!!!!!!!!!

> FAnia :-)

>

LOL, I need to! Then when I start getting depressed, I can open the file and

get a dose of confidence!

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

In a message dated 4/6/03 9:25:57 PM Eastern Daylight Time,

dayton@... writes:

> That's so funny. I know just how you feel. I remember standing there going

>

> " WHAT ?? WHAT DID I DO OR DIDN'T DO THIS TIME ??? " !!!!!

>

Exactly! I get sooooooo tired of it! Sometimes I come in the house and let

him scream for a bit thinking he will " get the message " that he can't

" manipulate me. " Then I think one of my neighbors will probably call child

services on me, lol. So I go out and get him and he looks so sad and

pitiful. ugh. I know he can't help it but some days I have to rethink what

I know.

<<So Roxanna, you have a middle schooler, a 6yr old and a 3 yr old.

Reece is 6 and Royce is the middle schooler - ??? is that right, what is the

name of the little one.  I am trying to keep everyone straight in my head.

3 boys ?  wooh-hoo -

>>

I also have a 11 yo dd who is in 5th grade this year. And an older dd who is

already gone from the nest! Royce is 14, Reece is 6 and Ryder Luke is 3 yo.

Don't try too hard to keep them straight - most people can't and somedays I

just yell whatever name comes first. lol. If I had known they would all

have such problems, I would have given them different names so they didn't

blur together like that.

Roxanna ô¿ô

Autism Happens...

[Guest guest]

That's so funny. I know just how you feel. I remember standing there going

" WHAT ?? WHAT DID I DO OR DIDN'T DO THIS TIME ??? " !!!!!

You really get your patience pushed to the breaking point sometimes.

I told my mom I could see how someone who wasn't " quite right " could

just snap. It's a good thing we are programmed to love these little

monsters

- no matter what.

So Roxanna, you have a middle schooler, a 6yr old and a 3 yr old.

Reece is 6 and Royce is the middle schooler - ??? is that right, what is the

name of the little one. I am trying to keep everyone straight in my head.

3 boys ? wooh-hoo -

oh - I am posting something about Walmart and your whole wet noodle

conversation from a few months ago.

vindication for you " Walmart hating wet noodle Mom's " . )

Dawn

This is so true now of my 3 yo. He doesn't have a dx except one doc said he

was " overly anxious, overly shy and dev. delayed, speech delayed. " Like that

isn't enough, lol. But anyway, I know exactly what you mean by having to

have things a certain way. People would never understand what this is like

unless they have been there. Today, for instance, my 3 yo got out of the van

for the first time all weekend and came in the house without crying. Why?

Because *I* finally figured out the " right way " to do it. I have to open the

right door and I hadn't been doing that. I have to offer to carry him,

another thing I hadn't done correctly in the past. He has to have his shoes

off, freezing cold out be damned!

But all weekend, I've been coming in the house ready to blow up and he's out

there screaming and head banging because I've done something wrong. There is

no second chance! There is no " oops, I'm sorry...let me try it again! "

noooo! Get it right or pay the price!

So today, I was just so happy that I had done it right. For today, one thing

was easier. And let's hope he doesn't change his " routine " soon.

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

Exactly! I get sooooooo tired of it! Sometimes I come in the house and let

him scream for a bit thinking he will " get the message " that he can't

" manipulate me. " Then I think one of my neighbors will probably call child

services on me, lol. So I go out and get him and he looks so sad and

pitiful. ugh. I know he can't help it but some days I have to rethink what

I know.

**********Oh - I am right there with you. There have been many days

I have been glad we live at the end of a dead end road surrounded

by retiree's with poor hearing. LOL !!!

<<So Roxanna, you have a middle schooler, a 6yr old and a 3 yr old.

Reece is 6 and Royce is the middle schooler - ??? is that right, what is the

name of the little one. I am trying to keep everyone straight in my head.

3 boys ? wooh-hoo -

I also have a 11 yo dd who is in 5th grade this year. And an older dd who is

already gone from the nest! Royce is 14, Reece is 6 and Ryder Luke is 3 yo.

**************5 kids !! 5 kids and you still have time for us ??

Bless your heart.

>>

Don't try too hard to keep them straight - most people can't and somedays I

just yell whatever name comes first. lol. If I had known they would all

have such problems, I would have given them different names so they didn't

blur together like that. Roxanna ô¿ô

ROFLOL!!!!!

Too funny

Dawn

[Guest guest]

Roxanna

I don't know if you like any " country " music or not, but Alan has

out a song about him being a " work in progress " . It is pretty funny.

Work In Progress

(Alan )

chorus

You get tired and disgusted with me

When I can't be just what you want me to be

I still love you and I try real hard

I swear one day you'll have a brand new car

I even asked the Lord to try to help me

He looked down from heaven and said to tell you please

Just be patient I'm a work in progress

Dawn

Darren,

I have a problem with my dh doing this sometimes. Once I was pushing for a

laptop for my ds and the school said that giving him one would " make him

stand out and look different " to which I would have LOL. But my dh quickly

said, " oh, then we don't want to do that. " I wanted to knock him one under

the table. I wish he would think first about the main goal sometimes. I

have told him a million times, " Do not ever ever think of disagreeing with

me

in front of them or I will hurt you. " Well, he is a work in progress. lol.

Roxanna ôô

..

[Guest guest]

Seems to me that Alan is a wife beater, too ...

/ 4makelas@...

Way, Way Up in Northern Ontario

[Guest guest]

In a message dated 5/8/03 8:05:55 PM Eastern Daylight Time,

dayton@... writes:

> I don't know if you like any " country " music or not, but Alan has

>

> out a song about him being a " work in progress " . It is pretty funny.

>

lol, yes I have heard that song before. My dh loves Alan , also!

Roxanna

ò¿ò

It makes sense to go up the molehill

dressed for the mountain

Nan, the Wiser

[Guest guest]

In a message dated 5/13/2003 10:17:22 AM Pacific Daylight Time, Sjparvin

writes:

> BTW, I have two meetings tomorrow. I have one in the morning for my 3 yo to

>

> discuss his IEP. I have one in the early afternoon at the MRDD to discuss

> my

> 6 yo who is too smart to be autistic enough, lol. I should be looney by

> the

> time I get done! You are not alone!

>

> Roxanna ö

Roxanna,

How did the meetings go?? I hope all went as planned and you got what the

boys deserve to have in their IEP's. I also hope you are relaxing on some

tropical island drinking something sinful and...... okay, one can always

dream

I do hope you were able to have at least a moment to yourself that was

relaxing and peaceful.

Johanna

[Guest guest]

Great news re: Royce and his teacher.

Sorry to hear it isn't going as well with Reece and Ryder.

1 out of 3 - not good odds.

Maybe next year it will be 3 out of 3.

Good luck.

I hope your daughter is enjoying her summer.

Take care

Dawn

Royce's summer " program " is just meeting with a tutor twice per week. It is

going to be his sped teacher in high school and so they get to know

eachother.

Luckily, this is a guy (for a change!) and he's fresh out of college. AND,

Royce likes him. I'm so pleased that Royce is going to get along with him.

Reece's summer program is not really working out. The people at the program

are super nice and doing a great job. But the program is designed for

remediation - for kids who are academically behind. Reece is not

academically

behind. I will likely not agree to do this next summer. But he really needs

a

program with a routine. This one ends next week and I am thinking of putting

him

in an autism summer program for the rest of summer. I am going to go visit

it

next week to see if it will work out.

Ryder got ZIP for ESY and the school screwed us over on the comp. time he

was

due. We filed due process and are in the midst of that mess.

Ain't nothing easy. Hope you get caught up with everything soon!!

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

In a message dated 7/17/03 9:20:26 AM Eastern Daylight Time,

rwinters@... writes:

> I don't think you have enough information to disagree so strongly in

> this case. You don't know Braden, you don't know the psychologist and you

> don't know what he is thinking. You are passing judgement with insufficient

> information.

I was simply commenting on what you wrote in your post as is all any of us

can do in an online listserv.

<<You are passing

judgement - and rather strongly, I might add.  Have you felt betrayed by

adults in your life?  Braden is not going to feel " set up. "   It's not like

we're going to lure him into a room on the pretense of a party and then

throw feces all over him.  We are simply going to talk to him.

>>

I don't know why you would ask me if I have felt betrayed by adults in my

life. I haven't that I know of, other than the usual human interactions, I

would

imagine. I don't think my thinking this is weird has anything to do with any

hidden past of mine. I am certainly not going to get my own therapy because

I disagree with what someone else wants to do. People come through this list

all the time and have a variety of ways they deal with their kids' problems.

This one is new to me.

I said in my post that if it were me, I'd be really pissed to be set up like

this - that's just an observation. If you are sure Braden isn't going to feel

set up, then great. I hope it all works out for him. But you did not say

you were simply going to talk to him. You were stating in your post that the

purpose was to piss him off and get a reaction out of him. You stated that

everyone is disappointed because the psych hasn't been able to make him angry

yet.

I think it was more than " just talking to him " in the post you wrote.

<< I suspect that he may be wondering if Braden is Bi-Polar,

not Asperger.  If so, I would imagine that our options would be very

different. 

>>

Actually, he could be both, too. But regardless, my thoughts still stand as

I wrote them. I don't think he has to be forced into an angry confrontation

with this psych in order to dx bipolar either. I've never heard of doing this

to people before.

<<It's a matter of

a kid showing behaviors that are INCONSISTENT with Asperger, and he is

trying to figure out  what is going on.  Is it just a matter of the wrong

triggers?  Or is it something else entirely? 

>>

Well, as i wrote before, how long he has spent working with AS kids is not as

relevant to me as the method he uses here. AS is not triggered by being

angry either. So I'm not sure what kind of " trigger " he feels he must find.

<< Roxanna, I don't know why you feel so

strongly about this situation that you feel the need to continue to debate

it  when I have made it clear that I am comfortable with this therapist's

methods and that I am not seeking your advice. 

>>

I'm not sure what the problem here is. If you are comfortable with this

stuff, then great. I read your post yesterday and responded to it. I am not

" continuing to debate it " and I don't think responding to your post is a

continuation of anything. Your post came through yesterday. It's not like I

have

written about it for a week or something. I read two posts yesterday and wrote

responses to those last evening.

<< It is no different from the

way was treated by her church group for " lying " to her son about

the Mc's incident.

>>

I don't even understand what one has to do with the other. Everyone lies and

her group acted like they didn't do that and made her feel bad for it. I've

never once in all these years heard of any doc pissing a kid off in order to

dx him. I think it sounds mean and unecessary. If you feel it's sound and

worth your money and time, then go for it. I just think it's very odd - my own

personal opinion. When I read posts and I see something that looks odd to me,

I almost always write a post and say so. I've been at this for a number of

years and this is just how I am. If you feel it's the right thing to do, then

do it. My saying it doesn't sound like a good idea doesn't really matter in

the grand scheme of life. I thought I misunderstood at first, then you

clarified in another post and I realized I got the picture right the first time.

<<And I trust him and

see him as my best hope for unraveling the riddle of my sons.  I appreciate

your concern, but you have made your opinion clear. Subject closed.  Please

drop it.  It is not like you to be so judgemental. ***

>>

I hope he helps you find the answers you are looking for. I gave you my

opinion one time, geez. I simply responded to the post you wrote. I'm sorry

you

feel I am " judgemental " but I am what I am. When I read a post that I think

is odd, I say so. I want to learn more about what is going on. But I think

you explained it all just fine. I'm not sure what the big deal is at this

point. If you don't find this odd, great. I honestly have never heard of doing

this ever to dx AS or bipolar or anything else really so it certainly was

something I would have responded to. I don't feel that my saying that it sounds

very weird to me is anything bad. I am glad you are happy with this psych and

if

he helps your kids, then even better. Good luck!

<FONT COLOR= " #004080 " BAC FACE= " Elphinstoneâ„¢Roxanna

ò¿ò

It makes sense to go up the molehill

dressed for the mountain

Nan, the Wiser

[Guest guest]

In a message dated 7/18/03 1:45:46 PM Eastern Daylight Time,

dayton@... writes:

> LOL!!!!!!!!!!!!

>

> Better you than me. hahahahaha

>

> Bradley (like all males) has decided that his pee pee is HUGE because

>

> he can stand up and pee and Ally can't. She just has a very tiny one. LOL!!

>

> Dawn

>

Reece recently was discussing size with his father who told him that his will

grow as he grows and be bigger in time. Reece then said, " My penis is 36

months old right now. " lol.

He actually was sent home from summer school twice because we were having a

penis problem. They (at the school) decided it must be a bladder infection but

I don't think it is. I think it just grows and he doesn't know what to do

with it and so he keeps running to the bathroom. At home, he will scream at me,

" Make it stop! " and yell because he can't pee in that condition. He wants me

to fix it. I couldn't exactly explain that to the staff at the school who

are really stuck on the " infection " theory. But sensory issues are sensory

issues are sensory issues....

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

LOL!!!!!!!!!!!!

Better you than me. hahahahaha

Bradley (like all males) has decided that his pee pee is HUGE because

he can stand up and pee and Ally can't. She just has a very tiny one. LOL!!

Dawn

> when he was little he used to get

> up freaking out because he was having a little erection (MY PENIS IS

> STANDING UUUUUUUUP!!!!) Oh, I do so love these trips down memory lane.

>

We have this problem currently.

Roxanna ôô

[Guest guest]

What a " polite " way of expressing it! ...

/ 4makelas@...

Way, Way Up in Northern Ontario

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

From: <kneeleee@...>

He actually was sent home from summer school twice because we were having a

penis problem. They (at the school) decided it must be a bladder infection

but

I don't think it is. I think it just grows and he doesn't know what to do

[Guest guest]

Roxanna wrote:

Reece recently was discussing size with his father who told him that his

will

grow as he grows and be bigger in time. Reece then said, " My penis is 36

months old right now. " lol.

*******That's funny that he knows that.

He actually was sent home from summer school twice because we were having a

penis problem.

*********LOL!! that sentence in itself is funny.

Dawn

[Guest guest]

In a message dated 7/18/2003 11:00:43 AM Pacific Daylight Time,

kneeleee@... writes:

> Reece then said, " My penis is 36

> months old right now. " lol.

>

ROFLOL!!! Roxanna, you need to write that one down! Its a keeper.

[Guest guest]

In a message dated 7/20/03 1:31:29 AM Eastern Daylight Time,

dayton@... writes:

> He actually was sent home from summer school twice because we were having a

>

> penis problem.

> *********LOL!! that sentence in itself is funny.

> Dawn

>

>

Everything in my life is funny anymore. ha ha. Of course, he wanted to come

home anyway so I'm worried he will get ideas for when school starts and he

doesn't want to be there. And how do explain this stuff to a kid like mine? I

try to tell him to leave it alone and it will " go back to normal soon. " But

of course, he is yelling and not listening. And I'm sure he bowled the ladies

over at the summer program when he kept announcing, " My penis hurts! "

Roxanna

ò¿ò

It makes sense to go up the molehill

dressed for the mountain

Nan, the Wiser

[Guest guest]

Roxanna

no problemo - I don't always get my point out the first time.

I tend to ramble. )

Dawn

Oh, I'm sorry - I misunderstood you completely! lol. I agree that many

times they set the bar way too low.

Roxanna ôô

> I didn't join the group because the more I talked with her, it seemed like

> it was a pity party instead of a support group, with ideas, behavior

> modification,

> therapies, school support. It wasn't anything like - " what can I do to

help

>

> my child? " it was " my poor kids - the whole world needs to adjust for me

> and them " and I don't feel that way. This group has helped me so much and

> all groups aren't like that.

> That is what I was trying to say.

>

[Guest guest]

That's funny. what are you thinking ??

some ocd or something??

rule follower - ??

I think if they want a uniform, that is fine, some people really like

it - it is the MANDATORY part that pushes me over the edge.

Even the law says they have to have an " opt out " provision.

But as with many things in the school system, " easier said than done! "

Dawn

I was thinking of you yesterday, dawn. We were shopping and my dd

always stops at the rack of clothing of uniforms for school. She

wants to wear the skirts and shorts and shirts...all navy blue and

stiff looking. I don't pretend to understand why she wants to do

that! lol

Roxanna

[Guest guest]

>

> That's funny. what are you thinking ??

> some ocd or something??

> rule follower - ??

> I think if they want a uniform, that is fine, some people really

like

> it - it is the MANDATORY part that pushes me over the edge.

> Even the law says they have to have an " opt out " provision.

> But as with many things in the school system, " easier said than

done! "

> Dawn

I don't know why she likes that stuff. I think, just a guess, that

it is hard to " compete " with the clothing issues at this age. She is

11 yo now. I don't know why else she could possibly like them! I

told her we could find a private girls school for her, lol, but she

said no. whew. couldn't afford that anyway!

[Guest guest]

's middle school had a school uniforms policy for the first year he was

there, but there was also an opt out

provision. Certainly a letter from a doctor saying that a child had sensory

integration issues with the standard

uniform would work. Or even a letter from mom ought to work. They discouraged

it, and certain colors were banned

because of gang relatedness (they couldn't wear red and blue together, for

example). Dontcha just love it???

Liz

" D & A@Dayton " wrote:

> That's funny. what are you thinking ??

> some ocd or something??

> rule follower - ??

> I think if they want a uniform, that is fine, some people really like

> it - it is the MANDATORY part that pushes me over the edge.

> Even the law says they have to have an " opt out " provision.

> But as with many things in the school system, " easier said than done! "

> Dawn

>

> I was thinking of you yesterday, dawn. We were shopping and my dd

> always stops at the rack of clothing of uniforms for school. She

> wants to wear the skirts and shorts and shirts...all navy blue and

> stiff looking. I don't pretend to understand why she wants to do

> that! lol

> Roxanna

>

>

[Guest guest]

In a message dated 8/11/03 11:56:19 AM Eastern Daylight Time,

dayton@... writes:

> you're uh starting to . . . . um . . . sc - sc - sca - scare m-m-me

>

Be afraid. Be very afraid.

Roxanna ôô

What doesn't kill us

Makes us really mean.

[Guest guest]

Roxanna

you're uh starting to . . . . um . . . sc - sc - sca - scare m-m-me

At first, I would just get really angry and upset. It's only later that I

can laugh and sometimes my laugh is a bit bitter and shrill.

Roxanna

ò¿ò

[Guest guest]

<<<<<<<+++I hope everyone has a good first day of school!!>

dd had a swell day, ds had an awful one overall, despite being able to regroup

after each incident. at home he was really tough to deal with.

<<<<<<<+++, how can the baby be in nursery school already!?!?!?! It seems

like just the other day you were pregnant! lol. >>>>>

I swear I don't know !!!!!!!! He is over two years old !!!!!!!

F

[Guest guest]

Hi Roxanna:

You have come to the right place to find support and

information - we have all been where you are now, and

I still have days like that, so we truly do know what

you are going through. The people in this group are

like family and I know I can always come here in my

darkest days and find support. What you are currently

going through is very familiar to all of us. Do you

have family or friends that can help you with things

right now?

I have been diagnosed with RA and Fibro now for six

years. It is very difficult to get diagnosis at

times, and then the search for the correct medication,

combination of medications, begins. Are you on any

medications at this time? You need to be on pain

meds, at the very least, so that you can get some

relief while waiting for the blood work to come

through.

When I initially went in with hands red-hot, swollen

to twice their normal size, and severe pain, my doctor

put me immediately on Prednisone for the pain and

inflammation, and Motrin, while we waited for blood

work. I was RA positive and she began me on a DMARD

(disease modifying drug)too. Since then, I have been

on many different medications, and am currently on

Methotrexate, Enbrel, Mobic, Trazadone, and Ultracet

for the RA/Fibro. I have good days and bad days, but

I am still able to do most of what I want to do, just

at a slower pace.

Yes, there is light at the end of the tunnel, but

finding the right meds for you can take a bit of time,

and all the meds take time to build up in your system

before you feel any effects - during the time I have

had to change medications, and was in a lot of pain, I

would be given Prednisone to get me through. It's not

a drug you want to take for a long time, but for the

short run, it can be a really big help.

You need a doctor who is aggressive in treatment -

because the first few months/years after diagnosis are

the most important in finding medications that will

help slow the progression of the disease. If your

current doctor is reluctant to treat your pain and

symptoms, find another. You need to be pro-active to

fight these diseases. You will find out a lot of

great information here, sometimes I find out things

here even before my doctor does. Our moderators,

and a, are great.

It's hard to cope with the fact that you can't do

things you used to take for granted, and not know what

the future holds, and we all have been there.

Please feel free to post anytime, vent all you want,

we're always here for you.

Hope this has helped - I sure rambled on did't I? lol

Kathe in CA

--- silvervistasilvermine

<silvervistasilvermine@...> wrote:

> Hi,

>

> I came across this site and joined looking for

> support and advice to

> my recent condition I have been stressing over.

> It's been a little

> over 6 weeks from onset, have had 1 visit with a RH

> Doctor. My

> condition has been getting worse and I'm a bit

> freaked out about it.

> Doc said fibromylgia and am having more blood work

> for RA. I

> glanced over a few past postings and what stuck out

> to me was the

> finger flipping. That has started with my hands in

> the last couple

> weeks or so, ring and pinkyfinger first on the

> lefthand and now on

> the right also. I have pain I cannot imagine,

> stiffness in

> shoulders, hips, knees, & anckles and my hands are

> the worse and I

> wake up as if my hands have been stuck as if I've

> been hanging on

> the monkey bars for hours. Knees kinda stuck and my

> brain is not

> accepting this very well. I panic because I can't

> move or get out

> of bed for a while and I have to use my forearms to

> lift myself up

> or roll back and forth on my hips to contort myself.

> I'm having

> problems opening drink bottles and other things. Do

> I sound

> familar? Would appreciate correspondence and

> advice. Starting to

> feel like I might have mad cow (OT). Do things get

> better? Thanks

> for any imput.

>

> Roxanna

>

>

>

>

>

Kathe in CA

__________________________________________________