Re: Melinda

[Guest guest]

> I see your point Kathy, and no I haven't gone yet, but I will be

soon, trust

> me.

> I agree. This is why I suggested on their feedback that they also

put their

> logos on pencils and notebooks. More subtle, but the kids who are

really

> interested would see it, and the ones who ignore him might not...

and the

> teachers would be reminded that they are autistic, not bad... this

is a big

> issue for some of us.

> Truthfully, I plan to buy the coffee mug. As for the t-shirt or

something

> else for Nick, I would let him decide. His instincts are pretty

good.

> Love

> Tammy

Tammy,

Yes, I agree and I think your idea to put the message on notebooks

and pencils is a good one. I would be much more comfortable about

that then about him wearing it on his back.

Kathy

[Guest guest]

Roxanna wrote:

> Oh my! How cute is that! Where did you find this site?

There's a woman with AS named Camille who makes these shirts. I met

her on the Autistic Advocacy group:

AutAdvo/

[Guest guest]

> Or maybe they wear this:

> http://www.cafeshops.com/oddizmautistry.7266083

<<

Oh COOOOOOOOOOOOL

I thought so too, but i can assure you M would go berzerk if he saw any of these

products!!!

F

[Guest guest]

Yes, I agree and I think your idea to put the message on notebooks

and pencils is a good one. I would be much more comfortable about

that then about him wearing it on his back. <

I also want Nick to be aware that there is nothing WRONG with him because he

has Asperger's... I think he has the ego to pull it off. (TRUST ME... LOL)

Love

Tammy

[Guest guest]

<<<<I think you and I need to get together and join

forces and maybe we'll have enough strength to deal

with all we have on our plates!>>

we HAVE been doing that, haven't we ? :-)

Here is again a toast for this group !!! (toast!)

<<<<<We had to go back to the ER last night. We left out of

here at 12:30am and got back at 3:45. We came home in

a torrential downpour and the wind was blowing really

badly. .........Problem is, by the time we got almost home, he wasback to

where we were before we left to go to the ER

to begin with! And he never went to sleep.>>

Argh !!!!

<<<<<< He's still awake, and it's

11:20am. I did give him a full Xanax this morning, and

he's still awake, but he is so tired he can't stand

himself. >>>

poor thing! I sure pray they find what REALLY helps him already !

<<<<And I'm tired because I never really got any

sleep because he kept coming in and getting us up. So

much for relaxation. I don't think this pain in my

neck is ever going to go away.>>>>>>

yes, it will go away.

and as for relaxatuion, if you don't get rest, your bosdy will make sure for

you that you do, and then it is no fun vacation. so you better plan right now

for a mini vacation, even if virtual, but something that can give you the

feeling of luxury of " REST " ....

[Guest guest]

<<<< We are to start him on

Seroquel. And I'm to give him up to 3 Xanax when he

starts the panic attack. So I'm like, " How is he

supposed to go to school with that? " The psych said he

didn't know. That that was a good question.>>>

Melinda, I am not comfortable with this answer. who else is supposed to knwo

what JEremy should or should not do as he starts a new medication adn ups

anohter. Maybe he Should stay home until teh meds level and you can see how he

is doing on htem ? will the shcool allow for this ?

<<<<I feel like I'm being pulled in every direction.

School is wanting me to do something to keep him in

school and for him to be able to do his work on time

and stay awake. The psych is wanting me to give him a

sedative to help calm him from the panic attacks. And

just wants me all the time. Nothing else.>

poor , is probably feeling so out of control, and it is a scary feeling,

melinda, and he trusts you - that is why he is clinging to you. Hug him a lot

and tell him you know things are crazy right now but that you will do for him

all that is needed to find what he needs to get better. He knows that is what

you have been already doing until now. but he needs to hear and feel it again

and again, imho that is why he so wants YOU.

I think the hardest for someone is to feel like he is not under his own

control. If he is feeling his body/mind is doing things without his prior

consent so to speak, and without his understanding it, it is scary. Panic

attacks in themsleves are VERY scary, you really do feel like you are dying.

today my son had a pretty good day at school, except that he and anotehr boy

quarrelled at teh end of teh day andtehy had a little fight. Ds was so

emabarassed and disappointed and mostly was scared of himself, as he told me

later, because he said he had no idea how he got into the fight and he had no

idae how hard he was pulling the ohter boy's arm. it was really at the end of

teh day so I was already on my way to school. i knew nothing of it, as I was

parking the car, I spotted him squatting in the shade of a tree OUTSIDE the

school gate, and he seemed so scared, and he was in tears. HIs teacher told me

her impression today was also taht hescared himself to death whne he realized he

was hitting the boy. and later my son said it too.

I am calling his doc btw tomorrow .

but I brought this up just to say - is probalby also scared of what is

going on with him.

Please forgive me if I am out of my line, and if I am wrong about it all. I am

just commenting from my gut feeling, based only on your posts.

You are having one of the toughest times now with . but I urge you

regardless of whether or not he wil end up going ot inpatient or not - hug him

as much as you can and TELL him you knwo it must feel weird/crazy/awkward to him

all that is going on ith him, and that you are right there with him until this

phase is over.

<<,I have a team meeting with school on Wed. to try and

see what can be done to help him. The case manger has

said that if it meant giving him less work than normal

to keep him in school, she'd do it.>

It sounds like they are realy willing to work with you for 's benefit.

less work load is fine. Go for it. He may also need lesshour-load. My son

studies only 5 out of the 6 hours daily of his class. they were willing ot go

down to 4 , but I am stil trying the 5.

<<Have any of you experienced the need to give a

medication that is going to knock your child

out-possibly in the middle of school?>>>>>>>

Melinda, my son got his risperdal dosaged upped x3 last week. he gets to schol

rahter sleepy, tehnhe is better for teh next three hours, then he gets very

tired and sleepy and irritated .

I jsut let the school know that as per their interest we upped teh meds and

that it may take a while until he adjsuts to teh new dosage and tehy simply

accepted it. I fe feels very tired, he can go tot he teacehrs' lounge and tehy

will make a cup of tea for him and let him rest there.

<<<<<<< IMO, getting

straightened out is the priority, but yet the school

feels the academics needs to be. >>>>

the schol needs to understand taht it is ok if teh academics suffer a little.

most likely will be ablet o pick up everything he missed ina lot shorter

tme than it took teh class to learn it , no ?

<<<<<<< He

doesn't even play his Gameboy-which was his life

before.>>

NOW I am worried :-)

Melinda, I hear you, It does sound like is " out of himself " .

I still don't understand how it all started.

<<<<<<<She wants me to be firm and continue the rules we

established.>

I have to agree with htis. Think about it this way, melinda - everything

within and without is changeing for him now. Even you said : " i want my son

back teh way he was " and I am sure, though I don't know if he can express it

this way) taht he is feeling " I want my old Self back! " . so your rules, which

are in a way also a part of You, are teh only stable nonchanging thing he might

see in his world. it is very important taht you state those rules as usual. he

may not be able to attend to them, and you don't have to be stern adn punish him

for not following htem, but you need to repeat the rules so that he will get the

notion/feeling that at least his Mo=Home is the same no matter what. that you

are " holding the world " fo rhim for as long as needed until he can get hold of

it himself.

<<So I don't know. I'm exhausted.>

no doubt. I am sorry the only help I can offer is emails.....

<<<<This morning he

refused to ride the bus. He's ridden the bus since

Kindergarten. Now he refuses. Says he can't.>

believe him. he would if he could. I really believe so. AHs he stated why he

can't?

<<<<<<while we sat in the car and acted

like the we all know and love.>

I am glad you had these moments with him,it is VERY important that you keep

remembering this : he has not gone away. something out of his control is

affecting him. he is probably wanting to be back to himself just as wel as you

would like to see it happnen.

<<<<<<<At the moment I am exhausted. Mentally. My mind is

going a mile a minute. And it just won't stop. I

cannot stop thinking about what to do or how I should

do this or that, if this might work, or if that may

work. I just don't know..

I can't tell you .I would be as frantic as you are.

<< I am so tensed from wondering

how he is going to act, how to deal with is behavior,

and if he is going to sleep. It just seems that it is

all I can think of as well. It just really preoccupies

my mind!And it's not like I want to think about it all

the time-I just cannot not think about it. I want a

break so badly, and just can't seem to get one. >

Melinda, you aahve jsut probably described how is feelin himself !!

<<<<< My mom is afraid of him

and I'm afraid to leave him with anyone, and now he

won't go anywhere. Or do anything. So, in a way, I

feel trapped. It would be different if he was 2 years

old or something like that, but to be 11..>>>>>>>

argh, Melinda, I feel the same!!!! I was just this evening discussing taking a

course I would really like to , but for that I would need a babysitter. oh,

well! who int eh world ???

well, maybe I will take the course a few years form now., lol/ our whole life

surrounds the logistics of who stays with our son when.

our nextdoor neighbours leave their 10 year old alone all the time with his 6

yo brother and they can't understand why i can't leave mine..........

others jsut can't fathom why I can't get a babysitter.

<<<<<<<That makes me feel so much better to know you all are

there with me!>

of course we are !! keep us posted!

Fania

[Guest guest]

In a message dated 10/30/03 2:48:16 AM !!!First Boot!!!,

steph_jeffhunt@... writes:

> And if this is only the second time in 14 years then he needs a pat

> on the back for not being as dysfunctional as he was raised! 

>

Hello all,

I don't post often but do my best to follow the posts.  I just want to say

Melinda, my heart goes out to you.  You are doing the best you possibly know how

to keep your family safe and together (much easier said than done).  However,

it scares me all the exuses that are made for Tom.  I believe that things

stem from our past, but that is not fair for (or the other child that

witnessed this).  I do not feel that sharing Tom's past with will help

" fix " it for .  It is not going to matter much to him about dad's past

because was not there.  But it does matter to what Dad has done to

him now.  I agree about explaining to it is wrong what Dad did, and we

all lose our temper from time to time, and it doesn't make it right, and that

he's sorry (but it should be coming from Dad, it is not going to have as much

value coming from Mom who did not do that).  He needs to feel safe in his home. 

Can he trully feel safe after Dad doing this?

Just because Dad has only acted out twice in 14 years doesn't deserve a pat

on the back!  Children have been killed or severely injured for life because of

ONE incident.  I have a child that is living proof of that.  My 6 year old

daughter was severely shaken by her biological father at the age of 3 months. 

Why? Because she was colicky and Dad couldn't take the crying anymore.  When I

got the call to take her in as a foster child, I was asked " Will you take her

in if she lives through the surgery? "

I understand that we are all human, things happen, but please don't make

excuses for what an adult has done to a child to that extreme!  If I read

correctly, didn't Dad break the wall using his son's body?  It scares me to

think of

that.

I know my words may sound rough, but I am not meaning them to come out that

way.  It just bothers me to hear all the excuses as to why Tom is the way he is

and we should accept that as he gets help, but what about and Casey? 

There obviously needs to be focus put on Tom. however,  MORE focus needs to be

put on the children.

Maybe all of this has been said already, I don't know. I realized that not

all posts are even coming through to me, so I may have missed several in

between.

[Guest guest]

You have a VERY valid point! There is no excuse for what Tom did!

BUT.....(excuse it may be) I think it is a miracle that Tom did not

turn out to be worse than he is. When cycles like this get started

they tend to multiply generation to generation. If Tom was treated

so horribly as a child and this was his example in life then by

history he should have been twice as bad as his own parents. You

would think he would be a wife beater, and possibly injure a child to

no return... instead he has made a choice to try and be a better

husband and father and while those two roles can be challenging in

itself ... you add to the picture and that would make a person

from the " Leave it to Beaver " type family to loose it occasionally!

While this should have never happened at least the big picture is

that in a total of 5,110 + days (14 years) he has only had two

incidents! That is an accomplishment no matter how you look at it!

Tom DOES need immediate help because he has the tendancies but a

person like this is very hard on themselves and can be self

destructing.... they need all the encouragement and positiveness they

can get. See how bad he felt afterwards and how he felt he needed to

move out for the families sake??? If he left at this point it would

hurt way more than what he did by shoving into the wall.

needs his father and he needs also to be able to feel SAFE

with his dad. TOm managed to destroy that faith in one minute! So

Tom needs help! Tom needs to know that he is a good person though and

that just because he made an error doesn't mean he's a total

failure. Thus being my point!

Steph

> In a message dated 10/30/03 2:48:16 AM !!!First Boot!!!,

> steph_jeffhunt@y... writes:

>

> > And if this is only the second time in 14 years then he needs a

pat

> > on the back for not being as dysfunctional as he was raised! 

> >

>

> Hello all,

>

> I don't post often but do my best to follow the posts.  I just want

to say

> Melinda, my heart goes out to you.  You are doing the best you

possibly know how

> to keep your family safe and together (much easier said than

done).  However,

> it scares me all the exuses that are made for Tom.  I believe that

things

> stem from our past, but that is not fair for (or the other

child that

> witnessed this).  I do not feel that sharing Tom's past with

will help

> " fix " it for .  It is not going to matter much to him about

dad's past

> because was not there.  But it does matter to what

Dad has done to

> him now.  I agree about explaining to it is wrong what Dad

did, and we

> all lose our temper from time to time, and it doesn't make it

right, and that

> he's sorry (but it should be coming from Dad, it is not going to

have as much

> value coming from Mom who did not do that).  He needs to feel safe

in his home. 

> Can he trully feel safe after Dad doing this?

>

> Just because Dad has only acted out twice in 14 years doesn't

deserve a pat

> on the back!  Children have been killed or severely injured for

life because of

> ONE incident.  I have a child that is living proof of that.  My 6

year old

> daughter was severely shaken by her biological father at the age of

3 months. 

> Why? Because she was colicky and Dad couldn't take the crying

anymore.  When I

> got the call to take her in as a foster child, I was asked " Will

you take her

> in if she lives through the surgery? "

>

> I understand that we are all human, things happen, but please don't

make

> excuses for what an adult has done to a child to that extreme!  If

I read

> correctly, didn't Dad break the wall using his son's body?  It

scares me to think of

> that.

>

> I know my words may sound rough, but I am not meaning them to come

out that

> way.  It just bothers me to hear all the excuses as to why Tom is

the way he is

> and we should accept that as he gets help, but what about

and Casey? 

> There obviously needs to be focus put on Tom. however,  MORE focus

needs to be

> put on the children.

>

> Maybe all of this has been said already, I don't know. I realized

that not

> all posts are even coming through to me, so I may have missed

several in

> between.

>

>

>

>

>

[Guest guest]

Wow, Melinda, thank you !

now I am redder than beets!!!!

I only realized how far it can go AFTER the speech, when I saw all the

people coming to talk to me and saw their reaction to it...........

My intention was really to simply convey how wonderful these kids are, and

how big their difficulties are, and how we can all help them.

Thnak you for your generous words.

Love,

F

[Guest guest]

I agree with Patty that is you get a good surgeon they will try to help you with the insurance mess. I self-payed then appealed my insurance with help from my doctor and Dr. Blais' who had analyzed the implants. It took several appeals but I won. I had United Healthcare at the time and they told me in advance that if I had Capsular contracture or could prove an implant was leaking they would pay. I didn't have CC as I had had an open capsulectomy several years ago as I had had severe cc but upon removal of the implants, the left side had 30 grams less fluid than it was supposed to and both had visible mold in the vales causing them the be partially open. The doctor noted this as well as the report from Canada and they paid me back.

Good luck - insurance can be a real headache! Don't give up!

Shari

[Guest guest]

Shari

I am glad to hear that at least your insurance paid for this mess.

I agree with Rogene. There must be someway that you can sue this

doctor or Mentor for failure to disclose your implants were

contaminated to you. I do believe that someday after we leave this

earth we will all give an accounting for our actions here. Your ps

is going to have some explaining to do!

Hugs,kathy

> I agree with Patty that is you get a good surgeon they will try to

help you

> with the insurance mess. I self-payed then appealed my insurance

with help

> from my doctor and Dr. Blais' who had analyzed the implants. It

took several

> appeals but I won. I had United Healthcare at the time and they

told me in

> advance that if I had Capsular contracture or could prove an

implant was leaking

> they would pay. I didn't have CC as I had had an open

capsulectomy several

> years ago as I had had severe cc but upon removal of the implants,

the left side

> had 30 grams less fluid than it was supposed to and both had

visible mold in

> the vales causing them the be partially open. The doctor noted

this as well as

> the report from Canada and they paid me back.

>

> Good luck - insurance can be a real headache! Don't give up!

>

> Shari

[Guest guest]

Hi Melinda,

I can relate to your confusion and frustration!

If you get some answers please let me know, I am in a very similar situation.

I too, will try to help you if I can.

[ ] Digest Number 7786

[Guest guest]

Melinda ,

That is great to hear about your son improving! That just goes to show that

age is just a number!! )

Ginger

[Guest guest]

There were quite a few of us who had surgery in July last year and are

having our one year anniversaries Unfortunately, my brain isn't

cooperating with me to remember who everyone else was!

Congrats Melinda! My second of the two surgeries was exactly one year

ago today, but I'll give a proper update next week after my 1-year

followup appt

> >

> > Liz,

> >  

> > I had my original surgery at the age of 12.  Today is my 1 year

> anniversary for my revision (done at age 40).  I had to have my