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Carole, I hear you on that. This friend is a very wise woman, and what had happened was another friend ran out of her medical insurance because her husband had lost his job. So, with the realization of this, she had to do something to help her with her pain. For her, she chose to take something, I forget at this moment what it was. Well, she is feeling better than ever before. She just took the bull by the horns, went against Western Medicine, and is doing quite well.

Now, I don't think I could ever do this, but it worked for her. I don't understand...some people have success, others like me, have total failures when trying some of the "other" treatments. I guess for me, I just have to adhere to Western Medicine for my help. I don't like it, but I am accepting it! It is OK for me.

Debby

[ ] Debby

Your post reminded me of Cher on her farewell concert. She told the audience if there was any young people out there to listen to her. She said if there is something you are contemplating, quit contemplating and just do it! She said when you get older you don't want to filled with lots of "I wish I had done that!" Then she went on to say 'you can always say later I wish I hadn't done that!' I liked how she put it. Any way, you just made me think of it.Love,CArole K

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Carole...now that I've gotten older I say BOTH of those things way too

much...

love jerry

Your post reminded me of Cher on her farewell concert. She told the

audience if there was any young people out there to listen to her.

She said if there is something you are contemplating, quit

contemplating and just do it! She said when you get older you don't

want to filled with lots of " I wish I had done that! " Then she went

on to say 'you can always say later I wish I hadn't done that!' I

liked how she put it. Any way, you just made me think of it.

Love,

CArole K

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H i Debby yes our animals are special. I still have my kitties and one old pooch. My cats are rotten they always seem to make me laugh when I need it.

They get into some pretty interesting chases with each other and usually get so wound up that they and up running into each other and rolling around in a big ball of fur. Then they look at me like I did something. They are nuts but in this house that makes them perfect. Their names are Fluffy and Fuzzmonkey. My old pooches name is Pugsly he is 10 and very spoiled.

the

WV hillbilly

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Greetings to Fluffy, Fuzzmonkey and Pugsley from Ronia and Molly, the

furry queens of my household.

Sophie

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All,

I have slipped away for a few moments, back to my little room where the

computer is, to finish the final touches to a letter I am writing to the

Developmental Disabilities office in Tallahassee, Florida. I've read

your replies to my cry... THANK YOU.

Thank for you letting me in on the " DHs " I will keep that in the back of

my mind always... will more than likely bring a smile to my face when I

encounter another situation on the home front.

Take care all - I am now going to get my little one and rock him to

sleep, so I can hit the sack myself, 4:30 a.m. comes very early.

- Good night to all. debby

_________________________________________________________________________

___________

On Wed, 21 May 2003 21:54:07 EDT mfroof@... writes:

> <<Re-reading what I just wrote makes me wonder whether I am

> frustrated more

> with my little one? or my " big " one? Debby>>

>

> Hi, Everyone....Debby....that puts you right up there with most of

> us

> concerning our DH's (dear husbands on the good days!!!). It took

> me a long time to

> accept the autism, but it took my DH A LOT longer. I wasn't a

> spanking Mom,

> either, but DH sure could get angry and yell at the kids. It was

> hard for

> him to accept that Gareth wasn't doing his acting out on

> purpose.....there

> always seems to be an underlying reason. It could be pain (GERD,

> ear infections,

> hip dysplasia, etc), sensory overload from lights and sound,

> abdominal cramps

> from possible CD. Does he calm down if you rub his arm

> gently...with your

> fingers or a soft stuffed toy or feather? It didn't help matters

> any having a MIL

> (mother in law) who was very proud of the fact they could spank and

> smack

> their kids with rulers back then. Of course, she made it VERY clear

> that that

> was just exactly what Gareth DID need. Back then, if I saw my DH

> getting

> upset, I would take Gareth away or tell him to leave the room. It

> got to the point

> where I would say " at least Gareth has a justification for his anger

> and

> behaviors....what's yours? " I realize this puts more work on you,

> but my DH did

> eventually come around (and stood up to his Mom) and was more open

> to the

> autism dx. and the work that was involved in dealing with it. There

> seems to be

> one spouse who has a harder time dealing with the dx. than the

> other. Perhaps

> it's denial, perhaps it's wishing it will go away, who knows. Hang

> in

> there....you have all of us to help get you through this.

> Margaret

>

>

>

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Hi Debby,

The technique I had written was ONE of the reasons or some type of

connection that we could feel to understand why some of our kids

tend to lie around, act aggressively or otherwise misbehave

significantly in order to move to a less stimulating area, like a

gravitational security. Unfortunately, sometimes it usually happens

in some unsafe areas as its too overwhelming. I use to tell my

husband that its a guy thing to avoid shopping with mom. Not that I

want to offend any male on this list.

I have learned to understand that when he has a melt down its also

to avoid doing something as he is too tired. My mom said I had alot

of melt down when I was a youngster when she would take me to the

stores. I believe I acted out because it was taking me away from

what I wanted to do and I never like crowds, Hmm.

If I write more I have a tendency to go and on and on. So I'll stop

here. Is this explanantion good enough? Take care.

Hugs!

Irma,14,DS/ASD

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Hi Debby,

I have more information where you would relate to your son's

behavior. Oh, you remind me of what I do for my dh, this was the

only way to keep him updated. The best place was in the restroom. : )

Return later, need to run some errands this morning.

Irma,14,DS/ASD

> I am glad you sent it to the group. I am compiling certain

pieces of

> info so that my DH can read up on at his leisure. We are so new

to this

> - it is all very new, odd, and overhelming to us. Our Jordan is

so young

> (4), soooo active, and wild - we say he is 5-boys wrapped into 1.

We

> need all the info we can get to help us in managing our " typhoon. "

>

> - thanks, debby (DS/ASD)

>

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Hi Debby & All,

Ok, I'm back I did not want to bother my son as he would not

be a happy camper, he was up all night. Well, back to sharing some

info and I really do hope y'all could benefit from anything or at

least to understand why and it does make a difference. This is what

this speaker at one of the conference I attended, said " spread the

word " . There is also a book on Treasure Chest of Behavioral

Strategies for Individuals with Autism by Beth Fous, Ph.D. and

Wheeler, M. Ed.

Ok, so I am. As long as its allowed and not over-flooding the

messages. : )

Tip of the day: Make sure you invest on extra ink cartridges for

your printer. Save all receipts pertaining to anything related to

your child's dx for tax purposes. Including when attending

conference, worksops, purchasing books, etc.

PUTTING IT ALL TOGETHER:

Behavior Solutions That Work for Individuals with Autism Spectrum

Disorders

presented by - Bird-West Wheeler, educational consultant.

Autism spectrum Disorders (ASD) are diagnosed when a specific

constellation of symptoms is presented that includes communication

impairments, sensory difficulties and social skills limitations.

Since diagnosis of ASD, whether Autism, Asperger's syndrome or PDD-

NOS, requires evidence of significant needs in all three of the

aforementioned areas of functioning-communication, sensory and

social-interventions need to include strategies that address all

three areas of influence.

Some of the common characteristics of ASD significantly impact

learning and behavior. Such factors contribute to the situationally

inappropriate, awkward, rigid, disruptive or dangerous behavior

often associated with ASD. Persons with ASD frequently experience

underlying communication problems, sensory issues, limitations of

attention, skills deficits, modulation and regulatory challenges and

motor planning difficulties that can interfere with learning and may

be manifested as unacceptable behavior. Such learning and behavior

difficulties can be effectively resolved by addressing the related

communication, social skills and sensory needs of the learner while

teaching acceptable skills, instead of simply trying to stop the

problem behaviors.

Intervention plans need to include a combination of effective

communication supports, sensroy calming and sensory development

strategies and social kills teaching. Avoid focusing efforts and

trying to stop the unacceptable behaviors that are manifested when

an indidividual is experiencing communication, sensory or social

difficulties. Instead, focus intervention efforts toward the

communication, sensory or social skills limitation that initially

triggered the misbehavior.

1.

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Your Welcome,

I have more. Let me know if you would like more? I'll send it

privately so that I won't bore anyone or get tired of me posting. : )

I just retired from work and I'm getting all caught up with cleaning

house, etc. you name it and when I post its my down time. Plus I

have to keep my mind occupied or I'll get in one of those moods. I

do miss it but I do feel less stress. Maybe I'm going through one of

's traits, my routine has changed. : ) Thanks for listening

through my changes.

Irma,14,DS/ASD

> Irma,

>

> Thank you, thank you, thank you. I am going to copy this (and the

> previous info on Behavior Solutions – for ASD) into a Word

document, throw a large size font on it for dh and put it in the

restroom like you suggest. Also, thanks for the tip on tax

savings... we do go thru alot of printer cartridges.

>

> Two things my dh loves deary is saving money at tax time and our

little

> Jordan!

>

> - debby

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Hi Debby,

Could you please give me some references or links to where I could find the

information that you used to present to your educators at your IEP meetings

specific to DS/ASD???

I am compiling some things for my IEP meeting that is today and would

really like to add some of those to my file for my son. I have much info

on autism and much on DS but none specific to both for the educators and

administration.

Thanks so much!!!

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,

I am sorry in repling so late, I am just getting home from work and saw

your email.

One site is www.dsat.ca/health/dsautism.html on page entitled " Down

syndrome / Autism spectrum disorder project. page 3 of 6 second

paragraph.

Here are some more...

www.altonweb.com/cs/downsynrome/autism.html first paragraph

www.help-with-learning.com/article-6.html

www.geocities.com/Heartland/Fields/6979/autigen2.html

Hope this helps. debby

____________________________________________________________________

On Tue, 03 Jun 2003 10:26:06 -0400 " M. " <kmh@...>

writes:

> Hi Debby,

>

> Could you please give me some references or links to where I could

> find the

> information that you used to present to your educators at your IEP

> meetings

> specific to DS/ASD???

>

> I am compiling some things for my IEP meeting that is today and

> would

> really like to add some of those to my file for my son. I have much

> info

> on autism and much on DS but none specific to both for the educators

> and

> administration.

>

> Thanks so much!!!

>

>

>

>

>

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debby,

they are trying to, but the army keeps protecting him. they are going to court

next month.

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An ex of mine (father of my 20 year old) was a deadbeat for quite some

time.

However, when uncle sam started keeping his tax returns and the state of

florida attorney general's office kept hounding him and the threat of him

loosing his driver's license he started paying...

It was a long haul for the 8 years that he was suppose to pay. It seems

like forever when you are going thru it.

- take care, stay in touch with us.

Debby (mom to Jordan, 4 years DS/ASD, Tallahassee, FL, USA)

________________________________________________________________________

On Sat, 14 Jun 2003 11:00:35 -0400 includeallofus@... writes:

> debby,

> they are trying to, but the army keeps protecting him. they are

> going to court next month.

>

>

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Debby.

I'm so sorry about your son! May I ask how he was killed? I believe

when a person suffers major trauma, as you have, that the emotional shock

of it all does effect our health. Are you feeling any better with your

new medicine? Are you drinking plenty of water? I think I remember

reading that you are off work until January. That is great!! It will give

you more time to take care of yourself and rest. It has been really hot

the past four days. Very near 100 degrees. For all of you that live in

summer hot states -HOW IN THE HELL CAN YOU STAND IT???!!! I hate it!!

I'm ready for fall weather. I love cool cold weather. I remember in your

post that you took 6MP. My hep last week took me off imuran for a couple

of days to see if I would feel better. I have been pretty nauseated for

the past couple of months and getting weaker and weaker. Well my symtons

improved a great deal but when I went back on the imuran I got really

sick and very shaky and weaker.. So he took me back off the imuran and

started me on low doze of 6MP. The second day and third day I felt really

good. Much improvement but today when I got up I was nauseated and weak

again. Not as bad as before, but, now I'm worried. Do you have normal

liver #? I can't remember if you said you were on low dose of prednisone?

My liver # have been normal for at least a year and I'm worried that

will change. I trust his judgement and action but I guess I am still a

little nervous about the change. When I was real sick at the beginning

of my dx, my GI at the time, put me on imuran and I developed a fever. He

took me off and decided just to keep me on prednisone until I got

stronger. Then he put me back on the imuran at low dose until I worked up

to the 100mg. How long do you think it takes for the imuran to leave your

system? Anyway I would appreciate any opinions! I will be talking to my

hep early this week. -NH

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, it is WONDERFUL that your liver numbers are "good." But it always amazes me that our numbers can be "good" but we feel so lousy! It just doesn't make sense! I hope that you can get to the bottom of the nausea and that somehow you can take something that will work. Give the 6MP a little time...it takes a couple of weeks to get to where you don't get sick. I don't know how long the Imuran takes to get out of your system, but you should be doing better soon!

Yes, I am on 6MP. My GI had me on Imuran, but it made me so ill that she switched me to Cellcept. That one was a tad better, but within 4 months of taking that one, I was really sick again. Horrific stomach pains, etc. So, she put me on 6MP and I have been "happy" with that one. Yet, I still get sick some of the times. It didn't occur to me until just now reading your letter, that perhaps some of my nausea has been caused by the 6MP. I really am on a low dose (100 mg) but it apparently has done the "trick" because my numbers have been in the 40's-60's and for me, I think that is going to be pretty normal.

The prednisone was discontinued in February! That made my day! But it took several weeks before my body was able to move and function. It was when I dx the prednisone in February, that I had to take two months off because of all of my pain in my joints, etc. Then, after getting some rest and getting back to the gym, I was able to complete the rest of the school year. (I teach first grade)

As the year drew to a close, another teacher and I decided to team up for next year and as many years as I wish! That will be wonderful! The pay, of course, will be much less, but actually, it will put me in a lower tax bracket, so I won't be missing so much anyway. There is always a good side to everything!

Now, I will be able to go to church in the AM if I decide I want to go. I can go to the gym in the AM and get healthier and lose some of this much hated weight! Going to the gym so far this summer, has landed 20 pounds off my body! Lots more to go, but it IS a start.

As for the heat...I thought we WERE living in hell! LOL....our heat is much different that yours. When I have been back east, the humidity can just take away your breath! Horrible to my thinking. Here, though, it is a very dry heat and we can function OK. We have a very large pool (it has taken nearly 43 hours to fill it up and took 30 hours to drain! So, we spend a lot of time in the pool.

When it gets so blasted hot, nothing but staying in the AC will help. Even the pool is sometimes too hot during the day, but the evenings cool off for a bit. Occasionally we leave the AC on all night, but we try to just use our Swamp Cooler at night....it keeps us cool...sticky, but cool.

Our son was in a brain injury facility in Florida. He had been transferred from Minnesota to the place in Florida. One morning, well, January 19, 1996, we were called. His case manager told us they found his body at the bottom of the 100 ft radio tower in the facility. It was deemed a homicide for the first 2 weeks, and then suddenly, it was an accidental fall. Litigation soon followed. 3 years after, we received the photos of the crime scene as it was designated at first. It showed photos that we had not seen before. We discovered that it was quite probable that he and another client at the facility we on the tower. It appears that Carl was pushed off the tower. We believe that from how he was laying at the bottom of the tower and because he had numerous defensive wounds on his hands. He also had an horrific bruise on his leg where he had tried to catch himself.

While we will never know exactly what happened, we do know that we chose NOT to continue with the police. It appeared that there was a major cover-up as within 3 months, everyone except one person who had worked with Carl was no longer working for the facility..........I just leave it to God to take care of!

Thank you for asking because it is good for me to talk about it. Healing comes with talking. If you would like, I have two web sites for him.

http://carlmadeadifference.homestead.com/Carlpage1.html

and http://www.geocities.com/Heartland/Pond/8395 I would be honored if you visited. Our daughter wrote an awesome article, called A Grief All My Own. It was published in the National magazine for The Compassionate Friends several months after she wrote it. We were very proud of her work!

Goodness, this is long.....

Debby

Re: [ ] Debby

Debby.I'm so sorry about your son! May I ask how he was killed? I believewhen a person suffers major trauma, as you have, that the emotional shockof it all does effect our health. Are you feeling any better with yournew medicine? Are you drinking plenty of water? I think I rememberreading that you are off work until January. That is great!! It will giveyou more time to take care of yourself and rest. It has been really hotthe past four days. Very near 100 degrees. For all of you that live insummer hot states -HOW IN THE HELL CAN YOU STAND IT???!!! I hate it!! I'm ready for fall weather. I love cool cold weather. I remember in yourpost that you took 6MP. My hep last week took me off imuran for a coupleof days to see if I would feel better. I have been pretty nauseated forthe past couple of months and getting weaker and weaker. Well my symtonsimproved a great deal but when I went back on the imuran I got reallysick and very shaky and weaker.. So he took me back off the imuran andstarted me on low doze of 6MP. The second day and third day I felt reallygood. Much improvement but today when I got up I was nauseated and weakagain. Not as bad as before, but, now I'm worried. Do you have normalliver #? I can't remember if you said you were on low dose of prednisone?My liver # have been normal for at least a year and I'm worried thatwill change. I trust his judgement and action but I guess I am still alittle nervous about the change. When I was real sick at the beginningof my dx, my GI at the time, put me on imuran and I developed a fever. Hetook me off and decided just to keep me on prednisone until I gotstronger. Then he put me back on the imuran at low dose until I worked upto the 100mg. How long do you think it takes for the imuran to leave yoursystem? Anyway I would appreciate any opinions! I will be talking to myhep early this week. -NH

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Debby,

I just viewed the websites. That is a tremendous tribute to your son and an effort truly from the heart. You and your family have really been thru a lot. I can't imagine how difficult it must be to lose a son in this way, It is a credit to you and your family that you have chosen to 'let it go' despite the questionable circumstances. I applaud your decision to go back to work part-time. Good for you. Again it shows your positive attitude.

Thanks for sharing this.

Patty

-----Original Message-----From: tdcc [mailto:tdcc2000@...] Sent: Sunday, June 29, 2003 3:19 PM Subject: Re: [ ] Debby

, it is WONDERFUL that your liver numbers are "good." But it always amazes me that our numbers can be "good" but we feel so lousy! It just doesn't make sense! I hope that you can get to the bottom of the nausea and that somehow you can take something that will work. Give the 6MP a little time...it takes a couple of weeks to get to where you don't get sick. I don't know how long the Imuran takes to get out of your system, but you should be doing better soon!

Yes, I am on 6MP. My GI had me on Imuran, but it made me so ill that she switched me to Cellcept. That one was a tad better, but within 4 months of taking that one, I was really sick again. Horrific stomach pains, etc. So, she put me on 6MP and I have been "happy" with that one. Yet, I still get sick some of the times. It didn't occur to me until just now reading your letter, that perhaps some of my nausea has been caused by the 6MP. I really am on a low dose (100 mg) but it apparently has done the "trick" because my numbers have been in the 40's-60's and for me, I think that is going to be pretty normal.

The prednisone was discontinued in February! That made my day! But it took several weeks before my body was able to move and function. It was when I dx the prednisone in February, that I had to take two months off because of all of my pain in my joints, etc. Then, after getting some rest and getting back to the gym, I was able to complete the rest of the school year. (I teach first grade)

As the year drew to a close, another teacher and I decided to team up for next year and as many years as I wish! That will be wonderful! The pay, of course, will be much less, but actually, it will put me in a lower tax bracket, so I won't be missing so much anyway. There is always a good side to everything!

Now, I will be able to go to church in the AM if I decide I want to go. I can go to the gym in the AM and get healthier and lose some of this much hated weight! Going to the gym so far this summer, has landed 20 pounds off my body! Lots more to go, but it IS a start.

As for the heat...I thought we WERE living in hell! LOL....our heat is much different that yours. When I have been back east, the humidity can just take away your breath! Horrible to my thinking. Here, though, it is a very dry heat and we can function OK. We have a very large pool (it has taken nearly 43 hours to fill it up and took 30 hours to drain! So, we spend a lot of time in the pool.

When it gets so blasted hot, nothing but staying in the AC will help. Even the pool is sometimes too hot during the day, but the evenings cool off for a bit. Occasionally we leave the AC on all night, but we try to just use our Swamp Cooler at night....it keeps us cool...sticky, but cool.

Our son was in a brain injury facility in Florida. He had been transferred from Minnesota to the place in Florida. One morning, well, January 19, 1996, we were called. His case manager told us they found his body at the bottom of the 100 ft radio tower in the facility. It was deemed a homicide for the first 2 weeks, and then suddenly, it was an accidental fall. Litigation soon followed. 3 years after, we received the photos of the crime scene as it was designated at first. It showed photos that we had not seen before. We discovered that it was quite probable that he and another client at the facility we on the tower. It appears that Carl was pushed off the tower. We believe that from how he was laying at the bottom of the tower and because he had numerous defensive wounds on his hands. He also had an horrific bruise on his leg where he had tried to catch himself.

While we will never know exactly what happened, we do know that we chose NOT to continue with the police. It appeared that there was a major cover-up as within 3 months, everyone except one person who had worked with Carl was no longer working for the facility..........I just leave it to God to take care of!

Thank you for asking because it is good for me to talk about it. Healing comes with talking. If you would like, I have two web sites for him.

http://carlmadeadifference.homestead.com/Carlpage1.html

and http://www.geocities.com/Heartland/Pond/8395 I would be honored if you visited. Our daughter wrote an awesome article, called A Grief All My Own. It was published in the National magazine for The Compassionate Friends several months after she wrote it. We were very proud of her work!

Goodness, this is long.....

Debby

Re: [ ] Debby

Debby.I'm so sorry about your son! May I ask how he was killed? I believewhen a person suffers major trauma, as you have, that the emotional shockof it all does effect our health. Are you feeling any better with yournew medicine? Are you drinking plenty of water? I think I rememberreading that you are off work until January. That is great!! It will giveyou more time to take care of yourself and rest. It has been really hotthe past four days. Very near 100 degrees. For all of you that live insummer hot states -HOW IN THE HELL CAN YOU STAND IT???!!! I hate it!! I'm ready for fall weather. I love cool cold weather. I remember in yourpost that you took 6MP. My hep last week took me off imuran for a coupleof days to see if I would feel better. I have been pretty nauseated forthe past couple of months and getting weaker and weaker. Well my symtonsimproved a great deal but when I went back on the imuran I got reallysick and very shaky and weaker.. So he took me back off the imuran andstarted me on low doze of 6MP. The second day and third day I felt reallygood. Much improvement but today when I got up I was nauseated and weakagain. Not as bad as before, but, now I'm worried. Do you have normalliver #? I can't remember if you said you were on low dose of prednisone?My liver # have been normal for at least a year and I'm worried thatwill change. I trust his judgement and action but I guess I am still alittle nervous about the change. When I was real sick at the beginningof my dx, my GI at the time, put me on imuran and I developed a fever. Hetook me off and decided just to keep me on prednisone until I gotstronger. Then he put me back on the imuran at low dose until I worked upto the 100mg. How long do you think it takes for the imuran to leave yoursystem? Anyway I would appreciate any opinions! I will be talking to myhep early this week. -NH

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Patty, thank you for your kind words! Our lives have not been easy, but you know what? No one's life has been easy. I do not know how some of our group can go through stuff they go through. I think of Tony, his struggles, of those who are in the biggest fight of their lives over custody of their children. Others are going through court systems for various and sundry other things.

So, in the big picture, yes, I have been to hell and back, but I made it! Now I can reach out to others. I am proof that one CAN live after big time trials....and be happy. My struggle has been from believing in God to actually wondering if there WAS a God, to KNOWING there is a God! My journey to faith has been a very tenuous one at best. But I am content now. It has been a tough journey, but one that makes me happy now.

Have a great holiday!!!

Debby

Thank you for your encouragement.

Re: [ ] Debby

Debby.I'm so sorry about your son! May I ask how he was killed? I believewhen a person suffers major trauma, as you have, that the emotional shockof it all does effect our health. Are you feeling any better with yournew medicine? Are you drinking plenty of water? I think I rememberreading that you are off work until January. That is great!! It will giveyou more time to take care of yourself and rest. It has been really hotthe past four days. Very near 100 degrees. For all of you that live insummer hot states -HOW IN THE HELL CAN YOU STAND IT???!!! I hate it!! I'm ready for fall weather. I love cool cold weather. I remember in yourpost that you took 6MP. My hep last week took me off imuran for a coupleof days to see if I would feel better. I have been pretty nauseated forthe past couple of months and getting weaker and weaker. Well my symtonsimproved a great deal but when I went back on the imuran I got reallysick and very shaky and weaker.. So he took me back off the imuran andstarted me on low doze of 6MP. The second day and third day I felt reallygood. Much improvement but today when I got up I was nauseated and weakagain. Not as bad as before, but, now I'm worried. Do you have normalliver #? I can't remember if you said you were on low dose of prednisone?My liver # have been normal for at least a year and I'm worried thatwill change. I trust his judgement and action but I guess I am still alittle nervous about the change. When I was real sick at the beginningof my dx, my GI at the time, put me on imuran and I developed a fever. Hetook me off and decided just to keep me on prednisone until I gotstronger. Then he put me back on the imuran at low dose until I worked upto the 100mg. How long do you think it takes for the imuran to leave yoursystem? Anyway I would appreciate any opinions! I will be talking to myhep early this week. -NH

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Debby: I have visited Carl's site once again. You really did a beautiful job of honoring Carl.

God Bless you.

Love and prayers -

gina

P.S. Hope this finds you feeling well.

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Thank you .....I really appreciate it!

Debby PS......I am really feeling better....

Re: [ ] Debby

Debby: I have visited Carl's site once again. You really did a beautiful job of honoring Carl.God Bless you.Love and prayers -ginaP.S. Hope this finds you feeling well.

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In a message dated 7/15/2003 7:23:16 PM Eastern Daylight Time,

debbysmith@... writes:

> After all of this happend, I slipped into a stuppored state of who knows

> what. I thought we were going to fianlly get some assistance with a

> behavior therapist, a speech person, and some respite (all of which the

> doctor recommended). Then I got the phone call from the state's DSP

> office saying Jordan did not qualify.

Hi Debby,

I am so sorry to hear that Jordan wouldn't get the services. I think that

stinks. I think many of us with kids with special needs are in the same

predictament when it comes to childcare. I agonize about this every day. I work

only

seasonal so I can be home for the school year but I would love to work part

time. I would be stuck if Zeb was sick or had school vacation. I decided to

forget

it and stay home. I know that I could probably find something but I suppose I

am not desperate enough yet. I hope you can find a solution.

Charlyne

Mom to Zeb 10 DS/OCD ?

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Hi Debby,

Just read your message. I'll respond back as soon as I can, ok?

We're getting a taste of Claudette. Scratch one chore of my list on

watering the yard. ;)

Its my 16 y/o's turn with the computer. Things I have to do....

learn how to share and take turns. ; )

Take care and hugs.

Irma

> Oh my, what a wonderful write up.

>

> My Jordan, who is 4 years 6 months, displays some of the actions

> described in your write up. Jordan is pretty verbal... we are

fortunate.

>

> However, because of his being so verbal and also social, the

doctor that

> just assessed him, wrote him up as PDDNOS. What this means for us

is

> that our state developmental service program (DSP) will not

qualify him

> as autistic and therefore, will not provide services.

>

> Irma, I was preparing a response to your July 5, 23:55:02 email,

but

> somehow lost your incoming email and the reply I was drafting.

You had

> asked about how the doctor dx'd Jordan.

>

> After all of this happend, I slipped into a stuppored state of who

knows

> what. I thought we were going to fianlly get some assistance with

a

> behavior therapist, a speech person, and some respite (all of

which the

> doctor recommended). Then I got the phone call from the state's

DSP

> office saying Jordan did not qualify.

>

> My only issue now is my job... I've worked at the same place for

17 years

> (I am the office business manager). I've got care for him

arranged thru

> the rest of the summer; however, when school starts back up, I

will only

> be able to work 5 hours a day at the most (his school starts at

8:30 and

> ends at 2:30 - the drive from my house, to the school, and to my

office

> is 50 minutes, minimum).

>

> So I am now pondering whether to give up my job (and my pay check

and my

> health insurance) and try and find something part time (I am not a

young

> chick anymore) so I can be with him when he gets out of school. I

have

> lots of skills - computer, desktop, electronic files: adobe

acrobat pdf,

> writing skills, meeting planning - I just fail in the area of

marketing

> my self to businesses. I am very hestitant at this point to walk

into my

> boss' office and say " well, I'm giving my two weeks " before I have

> something part time lined up.

>

> Sara, I am interested in more ideas like you were taking about

earlier on

> how to help find or create employment.

>

> It looks like the situation is driving the life choice in our

household.

> It is scary, but I love my little Jordan and want to be there for

him.

>

> - debby (mom to Jordan)

>

>

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Irma,

Oh, we got a glimpse of Claudette on the last night's world news. Hope

it doesn't turn too bad for you.

debby

____________________________________________________________

Hi Debby,

Just read your message. I'll respond back as soon as I can, ok? We're

getting a taste of Claudette. Scratch one chore of my list on watering

the yard. ;)

Its my 16 y/o's turn with the computer. Things I have to do.... learn how

to share and take turns. ; )

Take care and hugs.

Irma

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> Irma,

> Oh, we got a glimpse of Claudette on the last night's world news.

Hope it doesn't turn too bad for you.

> debby

Hi Debby,

All is well at this end. Just being a hermit and now going to bother

in writing a novel. So I'm sending this off the list as it'll be

long. Ready for some homework or should I say a refreshing course.

I just went through on what you've mentioned on giving up work not

too long ago. I'm learning to adjust " again " . I did give up working

in the past when was younger. Here I'm again not working due

to the care of .

This time I'm letting my 16 y/o son Rick work, his choice. I had to

set him free and not worry about his brother and let him grow out in

the world. He use to help me out alot. We shall see when they return

back to school next month.

I hope the hours you've mentioned works out for you when Jordan

returns to school. What a decision having to be working for 17 yrs.

But then I do know our children requires alot of attention. Good

luck on this issue. Whatever works out for y'all. This is an issue

getting through each day because of the concerns for our kids. This

is also a battle to survive such strains.

Back to not qualifying for services. I hope you could dispute it/

appeal it or whatever it takes if possible.

>>>>>However, because of his being so verbal and also social, the

doctor that just assessed him, wrote him up as PDDNOS. What this

means for us is that our state developmental service program (DSP)

will not qualify him as autistic and therefore, will not provide

services.>>

**********Baloney******** Humbug*******you name it. I hope you do

find a solution.

I know, I know easy said than done, I pray that you do find an

answer. If there is a need for his daily challenges than its worth

the battle.

Is there any way that the physician could rewrite a " reconsideration

medical necessity letter " to describe the condition of your child

proving that he will be considered disabled due his functional

limitations from his disability condition, or combination of

conditions, are the same as the disabling functional limitations of

any impairment. To determine whether the child's impairment

causes " marked and severe functional limitations, " on how it affects

his ability to function on a day-to-day basis and over time.

Watching the choice of words describing him with mental impairment.

It should not be based just because he is verbal & social, but

hooray on that, that he can. I know most of the time when including

the label it should be written in with the IQ status. What was his

functional assessment?

--

* http://www.pacer.org/ebd/ffcmh.pdf

The priority population for mental health services consists of

children and adolescents under the age of 18 years with a diagnosis

of mental illness who exhibit serious emotional, behavioral or

mental disorders and who

1)have a serious functional impairment or

2)are at risk of disruption of a preferred living or child care

environment due to a psychiatric symptoms; or

3)are enrolled in a school system's special education program

because of a serious emotional disturbance.

---

Questions to ask-

Do you want services for your son?

Why?

Because families deserve the best, promising interventions and best

practices for our children with mental health needs.

Understanding and addressing the challenging behavior of our

children with special needs.

No one should be denied an opportunity to learn. Your child should

be found eligible for services due to his learning disability. A

problem does not disappear simply because it is not severe enough to

meet the criteris for a diagnosis. Parents should insist on a list

of specific written recommendations for how to help our child as a

result of any evaluation.

What happens to the child who shows certain signs, but is still

showing bizarre behavior at home or school and is unable to stay

focused on the ability to communicate and interact, etc. on whatever

issue you want for his needs.

Characteristics

Some or all of the following characteristics may be observed in mind

to severe forms:

Communication problems (e.g., using and understanding language);

Difficulty in relating to people, objects, and events; Unusual play

with toys and other objects; Difficulty with changes in routine or

familiar surroundings; and Repetitive body movements or behavior

patterns.

Children with autism or PDD vary widely in abilities, intelligence,

and behaviors. Some children do not speak; others have limited

language that often includes repeated phrases or conversations.

People with more advanced language skills tend to use a small range

of topics and have difficulty with abstract concepts. Repetitive

play skills, a limited range of interests, and impaired social

skills are generally evident as well. Unusual responses to sensory

information -- for example, loud noises, lights, certain textures of

food or fabrics -- are also common.

Educational Implications

Early diagnosis and appropriate educational programs are very

important to children with autism or PDD. Public Law 105-17, the

Individuals with Disabilities Education Act (IDEA), includes autism

as a disability category. From the age of three, children with

autism and PDD are eligible for an educational program appropriate

to their individual needs. Educational programs for students with

autism or PDD focus on improving communication, social, academic,

behavioral, and daily living skills. Behavior and communication

problems that interfere with learning sometimes require the

assistance of a knowledgeable professional in the autism field who

develops and helps to implement a plan which can be carried out at

home and school.

The classroom environment should be structured so that the program

is consistent and predictable. Students with autism or PDD learn

better and are less confused when information is presented visually

as well as verbally. Interaction with nondisabled peers is also

important, for these students provide models of appropriate

language, social, and behavior skills. To overcome frequent problems

in generalizing skills learned at school, it is very important to

develop programs with parents, so that learning activities,

experiences, and approaches can be carried over into the home and

community.

With educational programs designed to meet a student's individual

needs and specialized adult support services in employment and

living arrangements, children and adults with autism or PDD can live

and work in the community.

Autism and Pervasive Developmental Disorder-NOS (PDD):

Social symptoms & Sensory symptoms

Educational/behavioral interventions: These strategies emphasize

highly structured and often intensive skill-oriented training that

is tailored to the individual child. Therapists work with children

to help them develop social and language skills. Because children

learn most effectively and rapidly when very young, this type of

therapy should begin as early as possible. Recent evidence suggests

that early intervention has a good chance of favorably influencing

brain development.

This piece at http://www.txffcmh.org/

click under disabilites.

Communication is a common problem in children who have autism and

related disabilities. They often have difficulty understanding even

the simplest spoken communication from others. Because of this they

have problems knowing what is or isn't happening during their day

and why changes occur in their routine. They may have difficulty

switching from one activity to the next and understanding why they

cannot do something they want to do at a particular time. For a

child with disabilities even the simplest directions can come and go

too quickly for them to process and understand. A visual support can

really help them understand the message. @

http://card.ufl.edu/visual.html or at

http://card.ufl.edu/topics.html

Here are more sites for you to review. I know you're aware of them

but just thought I remind you.

http://www.nichcy.org/stateshe/fl.htm

http://www.autismfl.com/links.htm

http://autism.fsu.edu/PDFs/ServicesSSI.pdf

Have you contacted the Mental Health facility to see what services

are available? With state funds being cut you just never know what

other options you'll find. Contact the CARD Staff and see what you

could find out.

This is a piece from TX info but it could be similar to what your

state has to offer.

OUR PRINCIPLES

The Texas Federation of Families for Children's Mental Health

maintains that children and youth with emotional, behavioral or

mental disorders:

have unique needs that require individualized services.

must be respected for their rights, preferences, values, strengths,

cultural and racial backgrounds.

are entitled to full citizenship in their communities.

must receive what is necessary to achieve their full potential.

belong with families and need enduring relationships with adults.

make positive contributions to their families.

must receive supports necessary to remain with their families; out-

of-home placement must be considered as a last resort.

When children cannot remain with their families, out-of-home

placement must be viewed as temporary and as an extension of the

family. This treatment must be available close to the child's home

and family members must be involved in all decisions regarding their

child.

Well I hope something helps and I apologize for my babbling. Our

children are poorly served by programs that are inadeuately funded

and poorly managed. It takes us to voice for our childs needs and do

the leg work. Take care.

Irma

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Irma,

You asked... " What was his functional assessment? " It was 18 to 24

months, w/IQ of 50.

Thanks for the info. We will get services for him thru the school

system and he is also a client of our local CARD agency. It is the state

children's mental health office that has rejected.

- debby

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Im sort of in the same boat, cant find any one for care of nathan outside of

his home health care stuff, so when we dont have an aide and no school or he

is sick i have to stay home or finda a replacement etc, becoming very

difficult, ive tried everything for a sitter when HHA's dont show up or call

in sick, im at the point to where i may need to go back being a night

nurse---3rd shift, so i can be home during the day for whatever, but so far

the only thing available is the local care center and i hated it there but

if push comes to shove i geuss beggars cant be choosy. shawna.

Re: Debby

> In a message dated 7/15/2003 7:23:16 PM Eastern Daylight Time,

> debbysmith@... writes:

>

>

> > After all of this happend, I slipped into a stuppored state of who knows

> > what. I thought we were going to fianlly get some assistance with a

> > behavior therapist, a speech person, and some respite (all of which the

> > doctor recommended). Then I got the phone call from the state's DSP

> > office saying Jordan did not qualify.

>

> Hi Debby,

> I am so sorry to hear that Jordan wouldn't get the services. I think that

> stinks. I think many of us with kids with special needs are in the same

> predictament when it comes to childcare. I agonize about this every day. I

work only

> seasonal so I can be home for the school year but I would love to work

part

> time. I would be stuck if Zeb was sick or had school vacation. I decided

to forget

> it and stay home. I know that I could probably find something but I

suppose I

> am not desperate enough yet. I hope you can find a solution.

> Charlyne

> Mom to Zeb 10 DS/OCD ?

>

>

>

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