confused and scared

[Guest guest]

In a message dated 11/9/2003 11:38:48 AM Eastern Standard Time,

wascher@... writes:

Joy, tell the docs you have had x-rays before and nothing has been shown, ask

for an MRI, they will usually do one with the symptoms you are having. Make

sure you request one though, they will not do one unless you know what your

saying.

I didn't think they could do them. I guess its insurance reasons why they

don't do the tests they should. Many weeks ago I went for pain in my right side

and they released me with pain meds telling me I need to see my doctor and

get a songram to see what is causing it. Ever since then I am feel like they

won't find the reason instead they load me up with pain killers. At the moment

since I wrote you the pain meds are taking the edge off but standing and

sitting I still feel the pain. Is that normal for a a muscle strain? You know

I

have enough problems form an accident three years a go and they are trying to

say its just making those irritated but honestly I did not have these symptoms.

Joy

[Guest guest]

Hi, when I went to the ER on Tuesday I did show them the MRI I had done

previously so they knew what they were dealing with before this happened. The

doctor was nice but also said that her only concern was that the neck was not

broken and then gave me pain meds and told me to follow up witht he doctor. I

told the doctor on Wed about the problems and on Thursday I tried to get them

about the problem, it wasn't until Friday when I called them back and found out

that they could do nothing for me and I had to wait for the appointment with

the pain specialist on the 21st and since the urinating problem has begun they

said they leave a note for him on Monday. My problem with going to the ER is I

know they won;t either be able to help me for I am was going by in the pass

all they will do is an x-ray. Now you said if I told them x-rays showed

nothing they might do more tests? I don't want to sit there for hours and wait

for

them to tell me to call my doctor on Monday which so far is not helping

either. I kind of have the feeling that the ER has to do the least amount of

testing possible. So If I go in and say please do one will they? I don't want

more

pain meds, I just want the pain to stop some other way.

Joy

In a message dated 11/9/2003 11:49:06 AM Eastern Standard Time,

wascher@... writes:

Sorry have to disagree...I work in an er 20 years now--minimal treatment?

No. What does happen though is it can be very busy--especially a weekend, and

sometimes the docs do not LISTEN (trust me....have seen tons of that). That is

why I suggest she make sure she has told them previous xrays show nothing,

and with pain going into her legs, she should ask about a lumbar or thoracic

mri...depending on the symtoms...or both. If you walk in and don't say much and

just point to pain, you will be given an xray and pain script if its negative.

If you explain and say this is what I've had done, and now I want something

new done..you will get further Also, ER's are not long term treatment, we

see you for the immediate problem, and refer you back to your doctor if your

pain does not subside in a day or so, they then can do continuing care and

follow up with the problem, and keep record on you. If we did a full work up on

every patient that walked in with back pain, our MRI would blow out

Re: Confused and scared

Most ER's are programmed to get patients in and out with minimal

treatment...that is why so many referrals to follow up with your doctor.

I forget...do you have a doctor? If so, I would call his service and get a

call back from whomever is on-call this weekend. Explain the difficulties and

pain levels and tell him that something needs to be done and that you are

ready to go to the ER for additional pain relief, tell him you want an MRI to

see

what is wrong. Or if you have an assertive husband, have him call the service.

Good luck!

[Guest guest]

Thanks for the information . I know when you do have to have things

done it does take a long time to do tests like that. I just didn't know I could

go in and ask them to do something like that. I am one who is very quiet and

will do what ever they say. I am trying to hold out till Monday but even then

I have no idea what that doctor will be able to do. Now isn't that

orthopedics can't help you and that is why he wants me to go to a pain

specialist?

Also, in your opinion would it be better if I went ahead and consulted a

neuroseugion on my own to get there opinion?

Joy

[Guest guest]

Joy, tell the docs you have had xrays before and nothing has been shown, ask for

an MRI, they will usually do one with the symptoms you are having. Make sure

you request one though, they will not do one unless you know what your saying.

Confused and scared

Hi,

The pain in the lower back is really bad now. I have to lay flat inorder

for it to not be as painful. I honestly don't know what to do anymore. If I

go to the ER I know all they will do is x-ray the lower back, probably take

urine sample and then say it is all muscular and need to see doctor to follow

up.

Maybe it is but you know I wish they do an MRI or something to make sure the

disc are not out. I am crying this morning in pain. As to the urinating

prombem I got to say I have not been going as frequently as I use to and when

I

do it is still an effort to go. I have to sit there and try to relax so it

can

come out. I am confused, what if it is an urinary track infection and I go

complaining about the back. The hospital just doesn't do much to help me.

They rush me at this one hospital. I go in and they hurry up and take x-rays

and

say they r okay the pain is normal and it is muscular and then send me on my

way with pain meds. I feel like they don't take the time to listen to me and

really help me. Maybe it is muscular but also I wish they note that I have

that bulging disc in my neck. Last night the pain went down my left leg and

into

my foot along with pain radiating down my left arm from the neck. The Valium

I take every eight hours and the percoct every four. Any suggestions please.

Joy

[Guest guest]

Most ER's are programmed to get patients in and out with minimal

treatment...that is why so many referrals to follow up with your doctor.

I forget...do you have a doctor? If so, I would call his service and get a call

back from whomever is on-call this weekend. Explain the difficulties and pain

levels and tell him that something needs to be done and that you are ready to go

to the ER for additional pain relief, tell him you want an MRI to see what is

wrong. Or if you have an assertive husband, have him call the service.

Good luck!

[Guest guest]

Sorry have to disagree...I work in an er 20 years now--minimal treatment? No.

What does happen though is it can be very busy--especially a weekend, and

sometimes the docs do not LISTEN (trust me....have seen tons of that). That is

why I suggest she make sure she has told them previous xrays show nothing, and

with pain going into her legs, she should ask about a lumbar or thoracic

mri...depending on the symtoms...or both. If you walk in and don't say much and

just point to pain, you will be given an xray and pain script if its negative.

If you explain and say this is what I've had done, and now I want something new

done..you will get further Also, ER's are not long term treatment, we see you

for the immediate problem, and refer you back to your doctor if your pain does

not subside in a day or so, they then can do continuing care and follow up with

the problem, and keep record on you. If we did a full work up on every patient

that walked in with back pain, our MRI would blow out

Re: Confused and scared

Most ER's are programmed to get patients in and out with minimal

treatment...that is why so many referrals to follow up with your doctor.

I forget...do you have a doctor? If so, I would call his service and get a

call back from whomever is on-call this weekend. Explain the difficulties and

pain levels and tell him that something needs to be done and that you are ready

to go to the ER for additional pain relief, tell him you want an MRI to see what

is wrong. Or if you have an assertive husband, have him call the service.

Good luck!

[Guest guest]

Joy, without knowing everything that is going on with your medical history, I

cannot answer that for you. What I can say though is it does take time with

spinal injuries or damage. Answers and repairs are not immediate and very hard

to diagnose--some peoples spines are a mess and they have NO pain! (I wish).

And even if it is a problem with your lower spine that shows on MRI, usually it

is something that can be prescribed meds until the neuro surgeon can see you--or

they admit you for pain control until the neurosurgeon can make a full

evaluation and then the two of you decide what your treatment will be. ER does

not specialize in those things....in heart attacks-we stabilize and we call a

cardiologist, in Head bleeds, we call in neuro, with spines, the same--neuro.

Broken bones go to the ortho docs. Basically ER can help subside pain or

stabilize a patient until you can be set up with that specialist. If there is a

problem in your lower back, causing things such as severe numbness in your legs,

and urinary problems, I suggest you go in and ask for an MRI..tell them exactly

those things. 1. you have numbness, 2. you have had negative xrays, 3. that

your having urinary issues now. 4. that you would like to know if an MRI can be

done, and if the ER doc will consult the on-call neurosurgeon. Those are not

unreasonable requests..especially with your symptoms. BUT, for all of the

above, expect at least 4 hours, and expect a script with maybe a better

diagnosis, and something to bring to your next appt.

Re: Confused and scared

Most ER's are programmed to get patients in and out with minimal

treatment...that is why so many referrals to follow up with your doctor.

I forget...do you have a doctor? If so, I would call his service and get a

call back from whomever is on-call this weekend. Explain the difficulties and

pain levels and tell him that something needs to be done and that you are

ready to go to the ER for additional pain relief, tell him you want an MRI to

see

what is wrong. Or if you have an assertive husband, have him call the service.

Good luck!

[Guest guest]

Ask your primary doctor to recommend a good neurosurgeon, instead of an

orthopod. Orthopedics are more familiar with bone than neuro tissues. Though

the spine crosses both areas of the spectrum, neurosurgeons do have more

knowledge in spinal surgerys and such. Good Luck to you Joy...I hope it all

works out.

Re: Confused and scared

Thanks for the information . I know when you do have to have things

done it does take a long time to do tests like that. I just didn't know I

could

go in and ask them to do something like that. I am one who is very quiet and

will do what ever they say. I am trying to hold out till Monday but even then

I have no idea what that doctor will be able to do. Now isn't that

orthopedics can't help you and that is why he wants me to go to a pain

specialist?

Also, in your opinion would it be better if I went ahead and consulted a

neuroseugion on my own to get there opinion?

Joy

[Guest guest]

> Sorry have to disagree... <

Nope...you didn't disagree...just said what I meant...LOL

If you come in and say I hurt, then you get minimal treatment, but if you go in

and say this is what has been done and it's getting worse, then they will dig

deeper. In most cases, that is. But I have seen doc's in ER's who do get

disgusted at patients that do not take assertive action in their own care.

" You've been hurting how long? "

[Guest guest]

absolutely! When someone comes in with a 4month history of diarrhea...its

like..ok, and you want us to fix you now????? cmon...what happened to seeing

your doctor about this after a week? That is why I am hoping Joy puts her foot

down...especially with urinary problems. I am confused though an mri of the

neck should not have any bearing on bladder problems and leg problems, that is

why I am hoping a lower mri might help her more. IT is hard to know the whole

history thru emails.

Re: Re: Confused and scared

> Sorry have to disagree... <

Nope...you didn't disagree...just said what I meant...LOL

If you come in and say I hurt, then you get minimal treatment, but if you go

in and say this is what has been done and it's getting worse, then they will dig

deeper. In most cases, that is. But I have seen doc's in ER's who do get

disgusted at patients that do not take assertive action in their own care.

" You've been hurting how long? "

[Guest guest]

> I am confused though an mri of the neck should not have any bearing on

bladder problems and leg problems, <

Yep...she may be having some lumbar problems also, or could just be starting the

early symptoms of a UTI. Either way...she needs to call her doctor.

[Guest guest]

In a message dated 11/10/2003 2:37:05 AM Eastern Standard Time,

wardlow@... writes:

I would be sure and mention the problem of urinating and everything else you

have been telling us. Make your doc take the time to listen to you

I will. This time I am making a list to take with me to be sure it is all

covered.

Joy

[Guest guest]

I would be sure and mention the problem of urinating and everything else you

have been telling us. Make your doc take the time to listen to you.

Confused and scared

Hi,

The pain in the lower back is really bad now. I have to lay flat inorder

for it to not be as painful. I honestly don't know what to do anymore. If

I

go to the ER I know all they will do is x-ray the lower back, probably take

urine sample and then say it is all muscular and need to see doctor to

follow up.

Maybe it is but you know I wish they do an MRI or something to make sure the

disc are not out. I am crying this morning in pain. As to the urinating

prombem I got to say I have not been going as frequently as I use to and

when I

do it is still an effort to go. I have to sit there and try to relax so it

can

come out. I am confused, what if it is an urinary track infection and I go

complaining about the back. The hospital just doesn't do much to help me.

They rush me at this one hospital. I go in and they hurry up and take

x-rays and

say they r okay the pain is normal and it is muscular and then send me on my

way with pain meds. I feel like they don't take the time to listen to me

and

really help me. Maybe it is muscular but also I wish they note that I have

that bulging disc in my neck. Last night the pain went down my left leg and

into

my foot along with pain radiating down my left arm from the neck. The

Valium

I take every eight hours and the percoct every four. Any suggestions

please.

Joy

[Guest guest]

Advanced cervical problems can definitely cause bladder and leg

problems but it does seem more likely that it could be lumbar.

Hope this helps!

Bob Hammerslag

> I am confused though an mri of the neck should not have any bearing

>on bladder problems and leg problems, that is why I am hoping a

>lower mri might help her more. IT is hard to know the whole history

>thru emails.

> Re: Re: Confused and scared

>

>

>

>

[Guest guest]

I need to determine whether this is due to my map, my hearing aid, the fact

that I can't localize traffic or all of the above. Just thinking about what

happened today (Tuesday) literally makes me sick to my stomach.

Dear ,

That must have been terrifying. My heart goes out to you. I hope you can

get your map changed if that is the problem. I am sending special hugs to

you and Tigger.

Marcy

[Guest guest]

,

I’m sorry this happened to you. I’m sure it was very scary. You recently

told us that you have lost some hearing with the unimplanted ear with the

hearing aid. I suspect that this is the problem and that is why you can’t

localize sound any more. To me, this gives you ammunition for your quest to

be bilateral. Let us know what the audiologist says but I’d put this

incident into the package for your insurance request. It sure gives you

some leverage.

Alice

http://www..com

--

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Checked by AVG Anti-Virus.

Version: 7.0.322 / Virus Database: 267.3.2 - Release Date: 5/31/2005

[Guest guest]

Deborah and Alice,

Thank you both for your messages. <hugs>

Deborah, you asked if I have a cane and whether or not cars would stop

for me if I used it. I do have a white cane, but unfortunately drivers do

not always heed it. Even when using my cane only I've had drivers sneak

behind me just as I'm about to step onto the opposite curb. Others have

actually run over it while making a right turn. Some drivers just don't have

the respect they should for pedestrians -- especially those who are blind,

deaf or in a wheelchair. To be fair, many pedestrians don't have respect for

drivers either.

Alice, when I discuss bilateral CIs with my surgeon and we submit paperwork

to insurance, I will definitely include a written statement about this

incident. Hopefully it will demonstrate to Medicare/Medicaid the importance

of bilateral CIs for a deafblind person's safety.

I heard from my audiologist today. She is currently trying to arrange a time

when I can have my CI and hearing aid adjusted. I feel better knowing that I

will receive some answers as to why this is happening. One of the things I'm

curious to know is if I've lost any more hearing in my right ear. Perhaps we

can arrange a hearing test at that appointment as well. Whatever happens, I

will let you know.

Thanks again for your support! <hugs>

Implanted: 12/22/04 Activated: 1/18/05

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

[Guest guest]

Hi Marcy,

Thanks for your message! <hugs> My audiologist contacted me today and

is in the process of setting up an appointment where I can have my CI and

hearing aid looked at. I'm also hoping we can get a hearing test scheduled

as well. I will be sure to let you know what happens. Thanks again!!

Implanted: 12/22/04 Activated: 1/18/05

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

[Guest guest]

,

I did not miss this post. I just didnt reply when I read it. Scary

what we have to endure out there. This is exactly why its crazy to depend

on the CI/HA combo. Either the hearing in the non implanted ear keeps

changing, or the HA is not up to par. Any changes thus will throw you off

balance because you cannot know if its dependable data.

So there has to be a way to show Medicare why we so desperately need

bilateral CIs.

And by the way, check your inbox for off list mail. LOL

*---* *---* *---* *---* *---*

Drop some of them bricks you keep haulin' around, life just ain't that

heavy!

& Gimlet (Guide Dawggie)

Newport, Oregon

N24C 3G 8/2000 Hookup

rclark0276@...

[Guest guest]

,

I know. It's frustrating, isn't it??

Next week I'm going to see my CI audi as well as the HA audi at my CI

center. I'm hoping we can make an adjustment to my hearing aid (the digital

or analog) that will allow me to hear traffic.

I'm just trying to hang onto every bit of hearing I have in my nonimplanted

ear before giving up hope. I did the same thing for many years when I

continued using an FM system despite people telling me I should use tactile

sign or Braille captioning.

If these adjustments don't help, I'm going to retire my HA for good and go

back to using the travel techniques I used before when I couldn't hear

traffic.

I can't help but feel saddened by the fact that I may be losing more hearing

in my nonimplanted ear. It's like losing my hearing all over again. <sigh>

P.S. I'm sorry to be such a downer today. I'll feel a whole lot better once

I know what is going on and why.

Implanted: 12/22/04 Activated: 1/18/05

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

[Guest guest]

,

I am behind so sorry for the late reply. As you know, I am bilateral and in the

test trials. I had to go without one processor for three weeks after 3 months

into my journey as part of the trials. It was hard for me. I felt like I had

gone deaf again in one ear. It was depressing. I knew I would get my CI back in

three weeks but that didn't make it any easier on me. I could not even listen to

music that first night. I was online with another CI user and he tried to get me

to listen to music to relax. He told me it would be a good time just to work the

one ear. I know he was right but I didn't feel up to it. If you did not know we

were friends you would think we were arguing. He pushed but I did not budge

until the next night. I did OK with one CI but how I missed my " baby " .

I can understand how you must feel. I know it is hard and hope something can be

done to restore your hearing with the HA. If not, I hope your fight for

bilateral CIs will be successful. Hang in there.

Sharon Myers

********************

I can't help but feel saddened by the fact that I may be losing more

hearing

in my nonimplanted ear. It's like losing my hearing all over again.

<sigh>

P.S. I'm sorry to be such a downer today. I'll feel a whole lot better

once

I know what is going on and why.

Implanted: 12/22/04 Activated: 1/18/05

Deafblind/Postlingual

BTE hearing aid user 20 years

Severe-profound hearing loss 10 years

__________________________________________________

[Guest guest]

Never apologize. What you are feeling is normal. You are going through the

" mourning " of the typical child. You feel betrayed by whatever Power gave you

this " imperfect " child. The " Gift from God " that people talk about is after

coming to terms with the diagnosis. Not one of us said " Oh how wonderful, a

child with Aspergers, lucky me. "

My son was diagnosed the day after Christmas 2000 at 5 years old. I can tell

you that GETTING a diagnosis was a relief. My tears came in the years prior

when my son had no friends, was a real loner, and while appearing to be happy,

was enough off-beat to be " odd " .

Fast forward 5 years, my son is in a regular class, has best friends, is a real

ladies' man, is a Cub Scout, aspires to be a Veterinarian, joined a Katrina

Relief fundraising group, on the school basketball team, writes his name in

cursive, and wants to be " like everyone else " .

I have just told him that he has Aspergers. He said to me " different is just

different, it's not bad. I am special and I can work the best that I can. I am

proud of me. "

Be careful of those who will tell you to read books. There are many resources

on the internet and there is a real danger of reading so much out of love and

the desire to understand your child, that he/she becomes a diagnosis no longer a

child. We all do it. In fact, I minored in Autism Spectrum Disorders

(Aspergers, Autism, NLD, PDD etc.) in college way before he was a glimmer in the

eye. I can spout all the clinical stuff and all the methods of instruction in

my sleep. Then I had and I can tell you that everything important I

learned about Asperger's I learned from my son.

He is my son first and a diagnosis once a year at most. Best advice I can give

you is follow your child's lead. You will get to where maany of us are sooner

than you think.

BTW, those who tell you that you are babying your child or spoiling him, let it

slide. You were adapting to his needs and don't you dare apologize for that.

That makes you a super mom.

( ) Confused and Scared

We recently received a tentative diagnosis of Aspergers for our 7

year old son. I had never heard of it before. I have scoured online

for information about the syndrome and some of it seems to fit my

child but some of it does not.

He has always been an introvert in a family of extroverts. He is

quite and shy. He has done odd things socially and occasionally

blurts out inappropriate things at inappropriate times. He wants to

play with children but ends up being cast aside which leads to more

isolation and lonliness. He plays on the outside of the group of

children or along side a single child. He was described by his

current teacher as " wierd " and she also stated that he baffles her.

She stated she has never met a child like him. He is fixated on

cars/trucks and will play with them for hours on end. He is fixated

with video games. He has a hard time holding a conversation without

talking about one of these two things.

He does not however have outbursts that some describe. He is quiet

and sensitive. He recently started slamming his door when he is

angry and I have let him do this because some emotion out of this

child was better than none but I do not consider this a melt down or

an outburst. He makes fair eye contact, not great to strangers but

good to his family. We are a gypsy type of family (military) and we

move a lot and he seems to adjust to it fairly well. We moved three

months ago and he did sob for about an hour when we told him but I

thought this was normal. It takes him a long time to find friends

and we thought he was upset about this aspect. His father is

deployed a lot and is currently out of the country and has been for

5 months. He seems to do okay with this as long as he has me.

I have always been told by family and friends that I babied him to

much and I thought maybe he acted this way because I did that. I

thought maybe I did not socialize him enough. I thought maybe that

because he was the youngest of four children and quiet that I

overlooked him to much. His sisters are loud and demanding and he is

quiet and in the background and the loud gets the attention first

around here. There was always a sneaking feeling in the back that

something was not right with our son but I would tell myself that I

need to get him out more. That I need to not let him spend so much

time in his room, that once I buckled down and found the time that I

would lift him up out of that world he lived in.

I bought The Asperger Syndrome book that was recommended to me by

the psychiatrist. That was hard to do. It still sits on my passenger

seat of my van. As if reading it will make it real and right now I

just want to delay facing any fact that our son may be different,

just for a moment or two. I feel like I planned a trip to Hawaii

and got on the plane and someone diverted it to the North Pole and

forgot to tell me.

I have teachers and school counselors talking about IEP's and

testing and special education classrooms and I am frozen with fear.

I have no idea what to do. I have no idea what steps to take for the

sake of my child. If his teacher has never seen a child like my son

how in the world will they help him at school? How do I know they

are doing the right thing by him? How will they establish anything

when a difinitive diagnosis has yet to be made?

I am a little worried that I may be posting to the wrong group. I

read a couple posts last night and one said something about

Asperger's being a gift from God and I don't feel this way. I am

devestated that he might struggle through his life. So if I am in

the wrong spot would someone please tell me so and maybe where I

should be?

I am overwhelmed, I am scared and I am so sad that he may be an

Asperger child.

Sorry to ramble on but I do feel a little better. Maybe I will go

get the book off the front seat of the car and bring it inside and

put it on the table.

Thank you for having a place that allowed me to say all this.

[Guest guest]

Hi ,

PLEASE don't feel alone. I am an Aspie, and My 3 Sons are Aspies

too. (all with various aspects, and some with NVLD and auditory

processing disorder) One thing I can tell you is that with my 3 boys

THEY ARE ALMOST TOTALLY DIFFERENT (yet the same in some ways)

First off, I don't LIKE you teacher at all. Telling you your son

is 'weird' and she doesn't get him... argghhh. She is going to have

to get him, because she's 'got him'!!!!

On line is ok, but you have to be able to weed through the stuff,

because when I first started researching Aspergers, I found waaaayyy

too much information, and some of it just didn't apply. MY only

guide to Aspergers that I LOVE is the Oasis Guide to Aspergers

(Barbara Kirby is one of the authors!)

If you have that READ IT. If not SPEND THE $25.00 and get it (didn't

mean to yell, take that as an excited tone:)I really want you to

know that the value in that book, and the information is exactly

what you need right now!

With Aspergers, some information will fit, some won't. That is just

how it works, and that is ok:)

Your son sounds just like my 12 year old. Exactly as you put it:

<paste>

>

> He has always been an introvert in a family of extroverts. He is

> quite and shy. He has done odd things socially and occasionally

> blurts out inappropriate things at inappropriate times. He wants

to

> play with children but ends up being cast aside which leads to

more

> isolation and lonliness. He plays on the outside of the group of

> children or along side a single child.

<paste>

As far as his teachers remarks, I am a little irritated at her!!

AS long as she did it in a 'nice' way, but if you don't know her

that well and she said that ARGHHH!!

Of course she hasn't met a child like him. Even a Neurotypical can

be totally different than the next child.

You mean your son talks about something other than the cars and

games? *smile* a little silly note there. My son ONLY talks about

things he is fascinated with such intensity it can scare people (and

even adults) away!

My 12 year old can be upset, he doesn't have major meltdowns,

neither does my 10 year old (though a little) my 8 year old,

however, HE DOES FOR ALL 3!

Eye contact with all 3 is ok, with me anyway, with other people it

depends. Sometimes one of them won't even look someone in the eye in

a long converstion. Just depends on how they feel!!

See what you wrote here....

<past>

>

> I have always been told by family and friends that I babied him to

> much and I thought maybe he acted this way because I did that. I

> thought maybe I did not socialize him enough. I thought maybe that

> because he was the youngest of four children and quiet that I

> overlooked him to much. His sisters are loud and demanding and he

is

> quiet and in the background and the loud gets the attention first

> around here. There was always a sneaking feeling in the back that

> something was not right with our son but I would tell myself that

I

> need to get him out more. That I need to not let him spend so much

> time in his room, that once I buckled down and found the time that

I

> would lift him up out of that world he lived in.

>

><paste>

My reply to that is sticking my tongue out. hehehehe. I have

heard it all, everything you said, and more. Let me tell you, It

isn't something you did. It is in his neurology. And lots of people

may say things, but once you become an informed advocate for your

child, none of what other people say will mean a thing. It may still

hurt, but you will know better!!

Hey, most of us have had our heads in the sand. We don't want to

accept what we hear about our kids. It is ok to feel that way (for

now:)

My first idea for you is get that book Oasis guide, and if you have

it READ it. You will have to really educate yourself on Aspergers,

because there are going to be a lot of people who are clueless

around you (including your school) Don't rely on them to fix things

for you, you want an IEP to help your son, but you need to know what

kind of help he needs, first!

I bet a Speech Evaluation (For pragmatics) and an Occupation Therapy

Evaluation would be a good start.

ARe you doing any other type of testing to get the diagnosis

official?

I have done Neuropsychologal testing, and that covered so many

areas, and I know right where I am headed right now.

YOU ARE NOT posting to the wrong group!

As far as I am concerned, You fell into the right place, and I think

when you read any replies and other things people have written

about, you will find this a very good group indeed!

Of course you don't feel Aspergers is a gift (yet) But remember that

your son is the same son you have had all along, and now you will

feel validated that you didn't DO anything wrong with him.

When you can really understand Aspergers, and you can see your son

grow and change, I think you will find the good aspects of AS.

Because he is an Aspie doesn't mean he has to struggle through life.

The fact that he may be finally getting his diagnosis, and he has a

mom that loves him to the max, that is a great start. The more you

know about him, the more you will understand him and be able to find

ways to work with him, so that he can be just as productive and

happy as your other children.

Please don't be scared. This is just a first step on a wonderful

journey. Aspies are wonderful kids. I can already say I adore yours

and I have never met him, so if he has someone that just doesn't get

him, tell them that from Maine thinks he is one of the most

wonderful boys in the world. (I have 3 aspies, I am an aspie and I

know of 5-6 other kids that have Aspergers, and through any

tantrums, rages, meltdowns, or just plain 'obsessive ' talking, I

just LOVE them all!!!!)

Hugs for you!!! You will feel lucky before you know it. A lot of us

are lucky that our kids JUST got dx. Mine was 10. 10 and 8.

Have a GREAT week. Read read read. Books are pretty on chairs, but

even more beautiful when you are reading them:)

*smiles*

B

[Guest guest]

Hi :

We recently went through the same emotions when our

son (who turned 4 this august) was diagnosed as

PDD-NOS. At this time they're not even sure if he has

Aspergers or PDD-NOS.

Since then I have talked to a lot of uncles and aunts

and they all describe their children (who are now all

grown up) as having lots of emotional and social

issues. Most of them were loners, clung to their moms,

didn't have any friends, etc. One of them is now going

to Harvard, the other one is doing his residency in

forensic psychiatry. So, hang in there.

My son has severe speech delay and anxiety issues. He

also seems immature (his lang. and pragmatics are like

a two year old). However, he is very affectionate and

playful. He has an amazing memory too.

Growing up, I was a pretty average student too. I

never used to do my homework, had issues with math,

just couldn't get started with my assignments, never

finished my summer homework assignments, etc. Oh, and

did I tell you that I sucked at sports. I could never

hold on the ball if my life depended on it. Somehow,

that all changed after I started college. I have a

masters degree in computer science and make a pretty

decent living.

If your son has fair-to-good language capabilities and

has an average IQ then there is no reason why he won't

succeed in life. However, up until he is in college,

his life (and yours) will be hell. I can tell you this

from my own experience.

Hang in there!

--- justdanecrazy00 <JustDaneCrazy@...> wrote:

> We recently received a tentative diagnosis of

> Aspergers for our 7

> year old son. I had never heard of it before. I have

> scoured online

> for information about the syndrome and some of it

> seems to fit my

> child but some of it does not.

>

> He has always been an introvert in a family of

> extroverts. He is

> quite and shy. He has done odd things socially and

> occasionally

> blurts out inappropriate things at inappropriate

> times. He wants to

> play with children but ends up being cast aside

> which leads to more

> isolation and lonliness. He plays on the outside of

> the group of

> children or along side a single child. He was

> described by his

> current teacher as " wierd " and she also stated that

> he baffles her.

> She stated she has never met a child like him. He is

> fixated on

> cars/trucks and will play with them for hours on

> end. He is fixated

> with video games. He has a hard time holding a

> conversation without

> talking about one of these two things.

>

> He does not however have outbursts that some

> describe. He is quiet

> and sensitive. He recently started slamming his door

> when he is

> angry and I have let him do this because some

> emotion out of this

> child was better than none but I do not consider

> this a melt down or

> an outburst. He makes fair eye contact, not great to

> strangers but

> good to his family. We are a gypsy type of family

> (military) and we

> move a lot and he seems to adjust to it fairly well.

> We moved three

> months ago and he did sob for about an hour when we

> told him but I

> thought this was normal. It takes him a long time to

> find friends

> and we thought he was upset about this aspect. His

> father is

> deployed a lot and is currently out of the country

> and has been for

> 5 months. He seems to do okay with this as long as

> he has me.

>

> I have always been told by family and friends that I

> babied him to

> much and I thought maybe he acted this way because I

> did that. I

> thought maybe I did not socialize him enough. I

> thought maybe that

> because he was the youngest of four children and

> quiet that I

> overlooked him to much. His sisters are loud and

> demanding and he is

> quiet and in the background and the loud gets the

> attention first

> around here. There was always a sneaking feeling in

> the back that

> something was not right with our son but I would

> tell myself that I

> need to get him out more. That I need to not let him

> spend so much

> time in his room, that once I buckled down and found

> the time that I

> would lift him up out of that world he lived in.

>

>

> I bought The Asperger Syndrome book that was

> recommended to me by

> the psychiatrist. That was hard to do. It still sits

> on my passenger

> seat of my van. As if reading it will make it real

> and right now I

> just want to delay facing any fact that our son may

> be different,

> just for a moment or two. I feel like I planned a

> trip to Hawaii

> and got on the plane and someone diverted it to the

> North Pole and

> forgot to tell me.

>

> I have teachers and school counselors talking about

> IEP's and

> testing and special education classrooms and I am

> frozen with fear.

> I have no idea what to do. I have no idea what steps

> to take for the

> sake of my child. If his teacher has never seen a

> child like my son

> how in the world will they help him at school? How

> do I know they

> are doing the right thing by him? How will they

> establish anything

> when a difinitive diagnosis has yet to be made?

>

> I am a little worried that I may be posting to the

> wrong group. I

> read a couple posts last night and one said

> something about

> Asperger's being a gift from God and I don't feel

> this way. I am

> devestated that he might struggle through his life.

> So if I am in

> the wrong spot would someone please tell me so and

> maybe where I

> should be?

>

> I am overwhelmed, I am scared and I am so sad that

> he may be an

> Asperger child.

>

> Sorry to ramble on but I do feel a little better.

> Maybe I will go

> get the book off the front seat of the car and bring

> it inside and

> put it on the table.

>

> Thank you for having a place that allowed me to say

> all this.

>

>

>

>

>

>

>

>

>

>

__________________________________

- PC Magazine Editors' Choice 2005

http://mail.

[Guest guest]

justdanecrazy00 <JustDaneCrazy@...> wrote:

I am a little worried that I may be posting to the wrong group. I

read a couple posts last night and one said something about

Asperger's being a gift from God and I don't feel this way. I am

devestated that he might struggle through his life. So if I am in

the wrong spot would someone please tell me so and maybe where I

should be?

I am overwhelmed, I am scared and I am so sad that he may be an

Asperger child.

Sorry to ramble on but I do feel a little better. Maybe I will go

get the book off the front seat of the car and bring it inside and

put it on the table.

Thank you for having a place that allowed me to say all this.

I don't think this is a gift from God either, lol. Some people like to think

that, though. You are in the right place and feel free to post and stay as long

as you like. I would encourage you to read that book! What is scarey is not

knowing the facts. Once you do, you can formulate a plan and deal with it.

Right now, everything is a " maybe " and you are caught in limbo.

Remember something we tell people all the time here - your ds is the same child

before the dx that he is after the dx. You just have more information and can

find help for his problems, if necessary. Hang in there!

Roxanna

Always Remember You're Unique

Just Like Everyone Else

---------------------------------

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