MARGARET

[Guest guest]

In a message dated 3/5/01 6:29:31 PM Pacific Standard Time,

writes:

> It's very rare that I

>

Margaret, are you kidding? You were there for me with comforting words when

we put Sheena to sleep....btw, it's two weeks today.....sigh......

Hugs,

[Guest guest]

In a message dated 3/8/01 2:21:18 AM Pacific Standard Time,

writes:

> Will keep you

> all posted when results come in. Thanks , Everyone.

>

Margaret, it doesn't matter the complexity of the problems we have, we're all

in here to help and vent!!! Prayers coming in.....hope you don't have to go

gf......I just don't know if I'd have the persistence or patience to do that.

[Guest guest]

Margaret,

Miles is pretty well natured so far, but he hasn't hit a big growth spurt

yet and he's mistaken for me on the phone all the time. The other day he

said " Mom, I've got to get a deeper voice everybody thinks I'm you. " LOL

It might be hard at first for them to start talking but don't worry about it

if isn't interested, I can understand that too.

Marisa

Mom to Miles 14, Brook 11 and Genevieve 3 yrs

[Guest guest]

You're home! Glad you had a safe trip. You have to let me know what you

thought of Seth's teacher and classroom. Well, what you saw of it. LOL

Hard to tell when there is no class going on! LOL Glad the feather made the

trip to State College easier/happier for Gareth. That is so funny! My

husbands reaction to Gareth's was the same as mine the first time I met

him... " Hope Seth turns out as good as Gareth. " I thought that was neat we

both had the same reaction and hope that Seth does that well. You have two

really nice boys Margaret. :-)

Gail

[Guest guest]

Hi Margaret....

Nope, I don't think not sweating is a good thing. It makes for a real

problem at school because they don't think " hot " unless they see something

obvious. For that reason, I had the doctor write a note to them briefing them

on heat restrictions for ..for instance, he can't go outside if the temp

is above 90 degrees. When he was a baby, it didn't occur to me that he wasn't

sweating and I am sure there were times that he was overheated and I didn't

realize it. Basically, it really sucks!

Re: sweating/anger...welcome, Lee Ann

Hi Sherry and Margaret,

I missed the original post on " sweating " but I can tell you that does

not sweat, ever! He also takes Risperdal and Zyprexa and they both affect

(potentially) the bodies ability to control temperature and tolerate heat.

Terry>

Hi, Everyone.....Wow, Terry..is that a good thing? I was always told that it

was one of the 'common' side effects of Risperdal. You have to wonder how

does his body regulate itself.

<Is anger a common thing with kids who have Autism? I

am very sure it is not a DS thing. At least I have not seen it in our

daughter who also has DS. Lee Ann> Welcome to our group. I had

to snicker at this anger thing....oh, the memories!!! My son, Gareth, use

to be vicious at times......he's better because he's on meds. He is 13 and

we started the meds when he was @6y/o. He would get VERY violent,

aggressive, lashing out, headbanging, etc. He rarely hurt other people, but

he would hurt himself. As for climbing and escaping.....I've got lots of

those stories, too!!! We would correct the situation one time (ie. raise

locks) and it would be a matter of days before the Houdini would find a way

out!!! He once squeezed through a 4 inch opened window.....after he popped

the screen out.....to get in the front yard and down the street. Thank

goodness, THOSE days are long gone!!! Take care, Everyone.

Margaret

>

>

[Guest guest]

In a message dated 4/8/2002 8:24:26 PM Eastern Daylight Time, mfroof@...

writes:

> Hi, Everyone....Charlyn...not necessarily. If you win, the district should

> have to pick up the cost. Initially, out of pocket, you may have to pay

> some, but the district will eventually have to pay up if you lose. I've

> been reading your problems and others.....I KNOW what you are all going

> through. You are bringing back some awful memories that I have of

> Gareth's

> 'district from Hell' 4 yrs ago.

Hi Margaret,

I 'm sorry to bring up the memories for you. I can only imagine what you went

through. I do know that I would be reimbursed if we go to mediation or due

process and the decision is in our favor. I am not a lucky person. I would

rather have him staighten all this out if possible without going the mile. I

know I have to sit for years with these people in meetings. I have no problem

standing up for the right thing but I am not a fighter. I have always been

the peacemaker. I feel rather guilty running to a lawyer but I can't do this

anymore. I am consumed with worry and my sanity is questionable.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Hi Margaret,

That is a really unbelievably cruel thing that your MIL said to you. I

am really sorry that you had to hear it and unfortunately remember it. That

is wonderful though that your dh was so supportive and spoke to her about it.

I don't really understand why she has to blame anyone for your child's

disability. You are a great Mom and I'm sure you know that!!

Marisa

Mom to Miles 15, Brook 12 and Genevieve 4

[Guest guest]

Yes, it was you! Sorry- I should have said that. No kidding, you

look 50 pounds lighter and 15 years younger!

Margaret

> Thanks Margaret, I hope I am the you are referring to!!!

Thanks I

> needed that comment today, I am feeling down. My weight is stuck at

170 (up

> 2 lbs) and no prospective boyfriends in sight!

>

> - MGB Friends

>

>

> -

> I just saw your new picture on MGB Friends!! Whoo Hoo,

girlfriend!

> What a fabulous picture!

>

> Margaret

>

>

>

>

>

>

>

>

[Guest guest]

In a message dated 4/20/2002 11:00:51 AM Eastern Daylight Time,

mfroof@... writes:

> .how many do you have?!?!? Just kidding!!! Couldn't

> resist (husband's)!!! I'm in a goofy mood this morning.

>

Hi Margaret,

I'm glad you asked that question, I was wondering who that woman was too. I

have only had one husband but they say variety is the spice of life.LOL I

don't remember what I wrote about him.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 4/20/2002 11:00:51 AM Eastern Daylight Time,

mfroof@... writes:

> .how many do you have?!?!? Just kidding!!! Couldn't

> resist (husband's)!!! I'm in a goofy mood this morning.

>

Hi Margaret,

I'm glad you asked that question, I was wondering who that woman was too. I

have only had one husband but they say variety is the spice of life.LOL I

don't remember what I wrote about him.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Hi Margaret,

I know what you mean about the papoose.We really hate doing that to him.

I didn't want the papoose, I wanted him sedated. Unfortunately I don't think

Brook is going to get rid of his fear of the dentist. So that is why they

papoose him, so that the exam can get done. Brook is very low functioning

and doesn't understand anything about it. We just have to get it done.

Unfortunately the dentist doesn't want to sedate him, so now we have to go

get the HIV and Hep C test, which is just going to make him afraid of

hospitals even more. Last time we did a blood test there he was really upset

and we can't explain any of it to him. Maybe we should just do the bloodwork

somewhere else. That might be the best solution, since I know we will have to

wait at the hospital which will upset him too.

Marisa

[Guest guest]

i refuse to let any doctor/nurse papoose nathan, they either sedate him or i

will find a doctor that will. He has been traumatized enough in doctors offices

to where he wont even sit on thier table things, will sit in the chairs in the

rooms though, if they were allowed to papoose him i wouldnt even be able to get

him in the office when needed. I would stand your ground and if they still

refuse then find another doc/dentist there are plaenty of them out there.

(HUGS)) shawna.

Re: Margaret

Hi Margaret,

I know what you mean about the papoose.We really hate doing that to him.

I didn't want the papoose, I wanted him sedated. Unfortunately I don't think

Brook is going to get rid of his fear of the dentist. So that is why they

papoose him, so that the exam can get done. Brook is very low functioning

and doesn't understand anything about it. We just have to get it done.

Unfortunately the dentist doesn't want to sedate him, so now we have to go

get the HIV and Hep C test, which is just going to make him afraid of

hospitals even more. Last time we did a blood test there he was really upset

and we can't explain any of it to him. Maybe we should just do the bloodwork

somewhere else. That might be the best solution, since I know we will have to

wait at the hospital which will upset him too.

Marisa

[Guest guest]

In a message dated 5/12/2002 9:03:01 PM Eastern Daylight Time, mfroof@...

writes:

>

> Get a good lawyer and file assault charges. Charlyne, you are

> dealing

> with the same crap I put up with for 3 yrs. The district isn't going to

> change unless YOU/JUDGE FORCE THEM TO CHANGE. The lawyer I had travels

> all

> over the States fighting for kids.

Hi Margaret,

I hope your trip was uneventful after the flat tire. I thought it was lucky

that you were at Donna's and not on the road. I forgot about you and Joan

going to the conference. I hired the best firm I could find in the state. The

lawyer will be with me tomorrow but Zeb was really tough today and I am

really frazzled. The dept. of mental retardation will also be at the meeting.

They have filed abuse charges for another incident that occurred in March. I

am at the end of the road. I am praying that God with give me the right words

and strength to get through this. My family has no idea what I feel or am

going through. Mom will handle it as always but mom is crashing out. I will

let you know what happens but I think this is only the beginning of meetings

or court.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Hi Margaret,

I just wanted to wish you good luck with your job.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

Margaret,

Well he had a water relapse yesterday. Brook was playing with the kitchen

faucet and when I stopped him from spraying the water, he immediately went

into the bathroom and put his hand in the toilet and swished the water around

in the bowl!

Today he did the toilet bowl swishing again, so I closed the lid and that may

stop him. I think I know what is causing the water obsession to come back,

we have been taking him to the pool almost daily and he splashes and

splashes. For him the more he gets of water play the more he wants. So once

the summer is over I think his water obsession will lessen.

Marisa

[Guest guest]

Margaret,

My 15 year old Miles is gifted also, also going into 10th grade, taking

Chemistry and Algebra 2/Trig a year early, so I know what you are talking

about. Yes, I have been known to say " Thank God Brook doesn't talk or we'd

never have a chance to get a word in. " Miles is more mellow now, but always

was very verbal and very intense about everything. I'm lucky that he is very

mature for his age too. But now I also have Genny who just turned 5 years on

the 21st, big birthday party tomorrow, with 4 of her friends, adults and 4 of

Miles friends who all love her too. The smart ones can be very difficult

also.

Marisa

Mom to Miles 15, Brook 12 and Genevieve 5

[Guest guest]

well happy birthday to ginny!! shawna.

--- poggim@... wrote:

> Margaret,

> My 15 year old Miles is gifted also, also going

> into 10th grade, taking

> Chemistry and Algebra 2/Trig a year early, so I know

> what you are talking

> about. Yes, I have been known to say " Thank God

> Brook doesn't talk or we'd

> never have a chance to get a word in. " Miles is more

> mellow now, but always

> was very verbal and very intense about everything.

> I'm lucky that he is very

> mature for his age too. But now I also have Genny

> who just turned 5 years on

> the 21st, big birthday party tomorrow, with 4 of her

> friends, adults and 4 of

> Miles friends who all love her too. The smart ones

> can be very difficult

> also.

>

> Marisa

> Mom to Miles 15, Brook 12 and Genevieve 5

>

>

[Guest guest]

In a message dated 9/25/2002 5:03:05 PM Eastern Daylight Time, mfroof@...

writes:

> Charlyn...I like that idea about

> a urinal, but can a boy use one if their penis is small? Will the urine

> just

> go down their legs?

Hi Margaret,

Zeb's penis is so small there is nothing to hold and what a mess. We are

installing a small child size urinal and will be able to replace it with a

larger one if need be. I have a cousin that's a plumber and a friend that

owns a plumbing supply that both came up with that solution. We also tried

the silicone but Zeb has his spirts of throwing things in the toilet and

flushing faster than I can grab his hand. The cousin is here frequently

pulling the toilet off the floor so we nixed the silicone until this passes,

I hope. I am hoping to get this installed in October. I will let you know how

it goes.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

I hope she feels better soon!

[Guest guest]

Sorry to hear MJ's not well, I hope she's on the road to

recovery really soon.

TuftySue

[Guest guest]

That's too funny about Gareth talking to the teachers with that cool lingo.

He must be getting it from his friends at school. Yes, your right if that's

the worst of his behaviors then he is doing fantastic. At what age did he

start talking? I can't remember if he was one of the kids who started after

meds or a certain therapy or when. Thanks for sharing!

Another friend of mine who has a child with Ds used to act like the

class clown at school, always making wise cracks. Now that became a problem,

because then the other kids would start laughing. He is pretty high

functioning and spent a good amount of class time with his peers. He must be

about 19 years old now. I hope he has grown out of it.

Marisa

[Guest guest]

In a message dated 10/17/2002 8:55:15 AM Eastern Daylight Time,

mfroof@... writes:

> .Gareth isn't the best for speech, but even with

> what he has, he can't relate illnesses either. I found that out this

> summer

> when I tried to take him off the Prevacid because he told me his 'food

> tube'

> didn't hurt. His increase in defience/nastiness proved otherwise. Now

> that

> he's back on the Prevacid, he's behavior is OK again. He still doesn't

> complain about ear infections, etc. Heck, he had that appendicitis 2 yrs.

> ago and I never knew it!!! All he did then was throw up.

Hi Margaret,

Our kids are always keeping us guessing,yikes. I seem to not to try anymore

but just go to the ped. If I am wrong and he is fine, no harm. Zeb would tell

me daily he is sick though to not go to school. He hates it.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 10/21/2002 10:18:13 AM Eastern Daylight Time,

mfroof@... writes:

> I

> don't think God would blame you one bit for not returning. Isn't there

> another Catholic Church in the area for you to check out if you wanted to

> return to church.

Hi Margaret,

Yes, there are a few but my dh's family has been going to that church since

the early 1900's. The big kids made all their sacrements there. Not everyone

is nasty. It's more me now.

Charlyne

Mom to Zeb 9 DS/OCD ?

[Guest guest]

In a message dated 11/5/2002 8:56:28 AM Central Standard Time,

BracinKnee@... writes:

> No one diagnosed it, it was a process of elimination. Over the past month,

> our RT's have been here changing settings on the vent, trying to find the

> right one. MJ only has problems at night, not during the day. As soon as

> MJ

> fell asleep, the air just goes into her stomach causing great discomfort.

> We

> would have to switch back to the lip seal but when she uses that all the

> air

> goes out her nose. She has some obstruction somewhere, but venting her

> stomach at night will help relieve the discomfort at least.

>

Is that a common thing to happen? Air going to the stomach? If you vented her

stomach, is the g-tube big enough to let that much air out that it will make

a difference? Won't there still be air in her stomach and not going to her

lungs? And if you have air flowing through the stomach, couldn't that damage

it? Well all's I think about is like having the stomach dry out cause of

moving air.....

[Guest guest]

Hi Margaret,

Thanks for the encouragement regarding the money issues. I'm not going to

give up but often wonder if I am just talking to myself,LOL. I have so much

to do yet to prepare this child for adult life. If only the school would

cooperate and give him a real education life be so good.

Charlyne

Mom to Zeb 9 DS/OCD ?