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It sounds like my Tammy is the same in academic skills as your daughter..way

below average. She LOVEs to trace letters and numbers, but can't form them

herself. She doesn't identify colors, but knows sequences of letters and

numbers by ear only. She seems to be more an auditory learner than most

autistics I've heard of..who use visual cues mostly. Some days here, go

smoother than others, but with " school work " , manytimes I need to prompt her

several times to follow through. We do " calendar " to start our mornings,

and that is kinda a prompt that I'm ready to " teach " her, or work on

lessons. It definitely is better if things are quiet here (even best when

her older sisters are gone), but we still have socialization with special

friends and people in our community. I do a lot of community activities

with her, and she does best if she has a " purpose " , like going to buy

nailpolish, going to the library, or to get a few items from the grocery

store. It's really hard taking her someplace that I HAVE to go...like my

weekly shopping, since sometimes she is unable to make it through the line

without having a breakdown. One time a lady was behind us in line at Ralphs

(my husbands least favorite store), and she was really upset because there

was only one check stand open. The lady started huffing and puffing

(literally), and stating over and over " They need to open up another

checkstand " . By the time Tammy and I got up to the counter, Tammy started

screaming and plugging her ears. She couldn't handle the lady griping! I

also have to watch her if there are other kids her age around who are

giggling or making noise. She gets oversimulated and will throw stuff, plug

her ears, or kick. It ends up being a bit tricky, but I have found certain

places and times that I CAN take her and we end up with a positive

experience. It takes so much energy! But 1 to 1 is really effective. I've

been looking into getting some help with a 1:1 program (in addition to what

I do). Sometimes I feel burnt out! (I bet all of you know what that feels

like!)

love, bj (mom to Tammy almost 9, young functioning autistic)

Re: new member

>

>

> Welcome BJ! My name is . I am mom to two girls, Jill, age 12, dx'd

> PDD-NOS and Laurel, age 9, typical. Jill functions pretty well in daily

> living skills area, but, her academic skills are way below average. It

> takes teeth pulling for her teacher to get her to do any work. When she

> does, it can take just a few minutes one day or 45 minutes the next to

> complete a worksheet. She is very distracted, especially by auditory

> distractors. The one-on-one time she has with her teacher is when she

> learns the most. My husband Jim and I have been married 21 years. We

live

> in Northeast Ohio. I'm glad you are a member of this list!

> --

> Visit our website at onnetmall.com/mall/sistersdiscjockey

>

> You can get paid for surfin' the 'net like I do! Visit alladvantage.com

> and use my I.D. # IME-345 or adsavers.com and use my email address of

> lmuzic@... as your referral

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Welcome B.J. Yes I am everywhere *L*

Libby (Mom of Kelsey 8)A mom on a missionIn Indiana mailto:simmons@...To see a picture of Kelsey visit my website at http://members.tripod.com/~cluless_2/index.html The best Homeschooling Autism website anywhere http://paulbunyan.net/users/shannon/autism.htmI'm much to young to feel this damn old

new member

Hi, I've just signed up on this list. My name is Bj (short for Betty Jean), and I have 3 daughters, the youngest (8) was diagnosed last year, developmentally delayed with moderate autism. I have been on a couple other autism lists in the past 3 months, and have learned so much. I thought I'd give this list a try since I have concerns about my daughter. Hope I get to meet you all.

love, bj

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Wow, Libby I believe it! I decided to just limit myself to 2 lists. Figure that it's enough reading for me, since I have to share the PC with the rest of my family! Sometimes it's hard to get on just to read my mail! Nice to see a familiar face.

love, Bj

new member

Hi, I've just signed up on this list. My name is Bj (short for Betty Jean), and I have 3 daughters, the youngest (8) was diagnosed last year, developmentally delayed with moderate autism. I have been on a couple other autism lists in the past 3 months, and have learned so much. I thought I'd give this list a try since I have concerns about my daughter. Hope I get to meet you all.

love, bj

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  • 11 months later...
Guest guest

Hi, and welcome! My name is Vickie and I have a daughter named who is almost eight, loves Barney (the purple dinosaur) and is not fully verbal, she mainly uses one-word utterances for communication. We are in Louisiana in the US. Yes, this group does talk to each other. It's a great group!

Vickie

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Guest guest

Hi Michele,

My daughter,Jolie,is 3 yrs. old,has been diagnosed with

PDD-NOS and is a fraternal twin.We adopted her and her twin brother at

birth.She is the sweetest ,smartest ,most beautiful girl in the world.She is

verbal and does well academically but has no social interest in other

children.She attends a full time program for children with autism.

I am new to the computer and have been " on line " with this group for over a

month.All are very supportive and helpful.Welcome

In friendship, Jo

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Hi,

I have an autistic 11 yr old daughter, .

I'm in NY State. How old is your daughter and where do you live?

New Member

Hi, Ive just joined this group in a hope that people actually talk to

each other!! I haved tried to join several autistic groups, but noone

ever speaks, or uses the chat room! :( I hope to meet other mums of

autistic girls, to prove I am not an only parent of a young autistic

girl!! I look forward to hearing from anyone!!! michelle :)

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Hi ,

I am a mother of a 4yr old autistic (asperger) and

spectrum daughter. And would like to welcome you to

the fourm...

__________________________________________________

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hello to you! these chat rooms i have found are a waste of time and no good conversations abound in them i have a daughter with autism that was caused by being in an orphanage in Romania for the first 3 years of her life until we came and adopted her she is turning 13 at the end of this month she is a beautiful child who is turning into a teenager now my how time flys she has limited verbal skills, however, we have taught her about 50 or so basic signs using SEE(signing exact english) sign language and now we are teaching her to use a communication board with pictures on it and we can record phrases or words for each picture. i am teaching her to bowl right now we just got home tonight from bowling she bowl 39 for her first game/she uses a special 6lb ball and special ramp to put the bowling ball on and roll it out onto the alley she just loves this and so it is a new activity for her she has self-injurious behaviors sometimes but lately due to the medication Topomax, she is much better i could go on and on so keep in touch and if you ever want another mom to talk to just email me at: rusheimlbfl27@... ~heidi~ melbourne florida New Member Hi, Ive just joined this group in a hope that people actually talk toeach other!! I haved tried to join several autistic groups, but nooneever speaks, or uses the chat room! :( I hope to meet other mums ofautistic girls, to prove I am not an only parent of a young autisticgirl!! I look forward to hearing from anyone!!! michelle :)

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your daughter sounds alot like mine. what is the full time program you are

talking about? is it helping her with social skills?

> Re: New Member

>

> Hi Michele,

> My daughter,Jolie,is 3 yrs. old,has been diagnosed with

> PDD-NOS and is a fraternal twin.We adopted her and her twin brother at

> birth.She is the sweetest ,smartest ,most beautiful girl in the world.She

> is

> verbal and does well academically but has no social interest in other

> children.She attends a full time program for children with autism.

> I am new to the computer and have been " on line " with this group for

> over a

> month.All are very supportive and helpful.Welcome

> In friendship, Jo

>

>

>

>

>

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Guest guest

my daughter is also 11 and very verbal.. she has social skill problems

though. her speech is slow and repetetive sometimes. this causes other

children to stay away.

> RE: New Member

>

> Hi,

> I have an autistic 11 yr old daughter, .

> I'm in NY State. How old is your daughter and where do you live?

>

> New Member

>

>

> Hi, Ive just joined this group in a hope that people actually talk

> to

> each other!! I haved tried to join several autistic groups, but

> noone

> ever speaks, or uses the chat room! :( I hope to meet other mums of

> autistic girls, to prove I am not an only parent of a young autistic

>

> girl!! I look forward to hearing from anyone!!! michelle :)

>

>

>

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Guest guest

Hi,

My daughter is 12 years old and makes a great deal of noise. She can talk

with a limited amount of words. Cognitively she understands what others are

saying most of the time. Socially she is behind. She is in a Junior Girls

Scout Troop that has help her tremendously. Because of the severely of her

behavior I am one of the Co-leader for the troop ... I feel it would be

totally impossible for me to leave her at the meeting without me. She loves

going to the troop meeting even though is not able to do the work. The

so-called normal girls have accepted her with her strange behavior and she

has made advances socially. Our troop is going camping this weekend and so

are , her sister who is part of the troop and I. Wish us luck! This

should be an experience to remember! Jen is not potty trained, but all the

girls in the troop are aware of her this fact. I really feel that Girl

Scouting and me becoming a troop leader is one of the best thing I could

have done to benefit both my daughters. You have not already looked into the

" Girl Scouts " you might want to consider visiting

http://www.gsusa.org/

What I like best is the... The Girl Scout Law

I will do my best to be

honest and fair,

friendly and helpful,

considerate and caring,

courageous and strong, and

responsible for what I say and do,

and to

respect myself and others,

respect authority,

use resources wisely,

make the world a better place, and

be a sister to every Girl Scout.

The girls are expected to be a sister to every Girl Scout and this includes

my daughter Jen with all her behavior. She is their sister and they are

expected to do their best to be that sister to her. . It is wonderful for

Jen and it a great opportunity for the other girls to get to know Jen.

Take Care and God Bless,

Beverly Weakley

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doesnt that hurt you inside when you see the other children shying away from your girl-i wish so much for Alina to have more friends-but at least our behaviorist lets her play with her daughter and they have become very close and this is a good thing New Member>>> Hi, Ive just joined this group in a hope that people actually talk> to> each other!! I haved tried to join several autistic groups, but> noone> ever speaks, or uses the chat room! :( I hope to meet other mums of> autistic girls, to prove I am not an only parent of a young autistic>> girl!! I look forward to hearing from anyone!!! michelle :)>>>

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your helpless. all i can think of doing is teach her how to interact with

other children. i do this by teaching her on a case by case basis. it is

very hard to find help for social development. seems like these kind of

children will eventually learn over a period of time. just by being in the

situation and remembering how to act. my daughter's problem is that she

cannot read faces and tone of voices very well. so she does not know if

they are making fun of her or being serious. god help me when sexcomes into

play.

> Re: New Member

>

> doesnt that hurt you inside when you see the other children shying away

> from

> your girl-i wish so much for Alina to have more friends-but at least our

> behaviorist lets her play with her daughter and they have become very

> close and this is a good thing

>

>

>

> New Member

> >

> >

> > Hi, Ive just joined this group in a hope that people actually talk

> > to

> > each other!! I haved tried to join several autistic groups, but

> > noone

> > ever speaks, or uses the ! chat room! :( I hope to meet other mums

> of

> > autistic girls, to prove I am not an only parent of a young

> autistic

> >

> > girl!! I look forward to hearing from anyone!!! michelle :)

> >

> >

> >

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  • 10 months later...

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

My name is Debbie Rensing. I live in Grand Prairie Texas. I was

diagnosed

with still's disease in February of 1992. I am on permanent disability

because of it. In 1992 I was in 2 different hospitals because they did not

know what I had. I one day woke up with a 102 fever, and could barely move.

When I got to the E.R. my white count was 36,000 and my sed rate was 36.

They ran every test known to man on me. They called in an infectious

disease

doctor and finally they moved me to the county hospital that had better hope

for me. They did a deep muscle biopsy on my arm, but it came back negative.

They thought in the end I had Lymphoma, and the oncologists at Parkland

Hospital were stumped. Then a week later a rheumatologist came to my room

and in about 1 hour diagnosed me with stills. I was in the hospital for a

total of 40 days, and I lost 50 lbs. I had the rashes and fevers everyday

for 4 months once I got home, and then the fevers stopped. But, I was left

with a bum ankle, bad knees, and extreme fatigue. Because I stayed in bed

and could barely move for 40 days, I was so weak that I could not walk

normal

anymore. I must use a wheelchair for any long distance (mall, grocery

store,

etc.) It totally changed my life. I have a very understanding husband and

an 11 year old son who helps his mom a lot. In the past few days, I feel

like some of my old symptoms are returning (joint pain, rash in chest and

face, etc)...this time I dont want to go it alone. I also developed

diabetes

5 years ago, which doesn't help much.

That is about it. I am glad to know there are others, I need to know how to

talk to my doctor about this, he gets a blank stare when I say " Could it be

the Stills disease? " ...he just shrugs and says " could be " ...and I know he

doesn't know much about it.

Thanks

Debbie Rensing

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Hello Debbie; My name is Patty and I use Melt also. I live in So. CA and

have had Still's for 25 years. I have been lucky enough to have had several

joint replacements and remission for most of those years. Welcome to this

wonderful group of people, who are the most supportive and loving souls.

Feel free to ask questions, share you feelings, thoughts, and if you like,

we have a few Chat get togethers during the week. Some are at night and

some during the days. We usually post times and a link. I am happy you

have joined our family. Smiles for your day, till soon, Melt

Fw:new member

>

> ----- Original Message -----

>

>

>

>

> My name is Debbie Rensing. I live in Grand Prairie Texas. I was

> diagnosed

> with still's disease in February of 1992. I am on permanent disability

> because of it. In 1992 I was in 2 different hospitals because they did

not

> know what I had. I one day woke up with a 102 fever, and could barely

move.

> When I got to the E.R. my white count was 36,000 and my sed rate was 36.

> They ran every test known to man on me. They called in an infectious

> disease

> doctor and finally they moved me to the county hospital that had better

hope

> for me. They did a deep muscle biopsy on my arm, but it came back

negative.

> They thought in the end I had Lymphoma, and the oncologists at Parkland

> Hospital were stumped. Then a week later a rheumatologist came to my room

> and in about 1 hour diagnosed me with stills. I was in the hospital for a

> total of 40 days, and I lost 50 lbs. I had the rashes and fevers everyday

> for 4 months once I got home, and then the fevers stopped. But, I was

left

> with a bum ankle, bad knees, and extreme fatigue. Because I stayed in bed

> and could barely move for 40 days, I was so weak that I could not walk

> normal

> anymore. I must use a wheelchair for any long distance (mall, grocery

> store,

> etc.) It totally changed my life. I have a very understanding husband

and

> an 11 year old son who helps his mom a lot. In the past few days, I feel

> like some of my old symptoms are returning (joint pain, rash in chest and

> face, etc)...this time I dont want to go it alone. I also developed

> diabetes

> 5 years ago, which doesn't help much.

> That is about it. I am glad to know there are others, I need to know how

to

> talk to my doctor about this, he gets a blank stare when I say " Could it

be

> the Stills disease? " ...he just shrugs and says " could be " ...and I know he

> doesn't know much about it.

> Thanks

> Debbie Rensing

>

>

>

>

> Visit the Still's Disease Message Board

> http://disc.server.com/Indices/148599.html

>

>

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  • 1 year later...
Guest guest

Hello,

My name is Corina and I am the parent of a 5 year old autistic child. My

husband and I had always heard that the best therapy for our daughter would be a

sibling. We finally added one to our family and she is 2 months old. So,

someone please tell me, does it get easier????? I just can't imagine how

another sibling is the best therapy. Right now we are seeing our older child

regress and her behavior has become a bit more aggressive since the birth of her

sister. She finally acknowledges the baby is a part of the familly by referring

to her as " baby sister. " My daughter does not communicate well but she does get

her point across in her own way. The only good thing I have seen is that she

gets so mad with the baby that she screams out her demands and is able to do so

in a more articulate manner. We are actually hearing 5 and 6 word sentences! I

just want to know what we can do to help our daughter adjust. For those of you

who had another child after your autistic child was born, what suggestions do

you have? The therapist just says for us to be patient but he does not have to

live in our household and after 2 months of this, it is easier said than done.

For the past 2 days for example, my duaghter has undressed herself and thrown

major fits after I had already gotten her ready for school. I usually get her

ready and leave for work. My husband drops her off at school. It takes both of

us to get her dressed now when we had progressed to the point where she actually

helped one of us get her ready. This behavior has only occurred in the past 2

months since the birth of the baby.

family

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  • 3 weeks later...
Guest guest

The best thing I ever bought was a flowbee. It hooks to your vacuum and

cuts their hair.

Vicki

New Member

Hi. I am a mother of 2 children, ages 3 and 5 with autism. My 5

year old has been diagnosed with Asperger's and my 3 year old has

PDD. They were both diagnosed within the last 6 months, so I am

somewhat new to this. I am in the process of learning all I can

about the subject and treatment options. I would appreciate any

information which might be helpful. I do have a specific question:

Does anyone have any advice on how to take my child to get a haircut

without him freaking out? Thanks.

Unlocking Autism

www.UnlockingAutism.org

Autism-Awareness-Action

Worldwide internet group for parents who have a

child with AUTISM.

Schafer Autism Report

News and information on Autism

To Subscribe http://home.sprynet.com/~schafer/index.html

Healing Autism: No Finer Cause on the Planet

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  • 8 months later...

Hi Sally,

What you said is my son to a tee. He gets so upset when he can not do something

and just shuts sown completely. If you try to tell him not to run in the house

he asks if you still love him after barely getting on to him.

I am very lucky to have his K teacher on my side. She is constantly trying to

help him and keeps my hubby and I updated all the time. Now I just gotta start

my searches and figuring out what all these long terms mean since I am dislexic

it is harder to understand some words. (They run together on me.)

Nice to meet you,

Hi ,

I have a 9 yr old with Aspergers and you are lucky to have a good teacher on

your side.

If they are working on an IEP for your son, there are alot of things to

consider. Of course each child is different but they usually have sensory

issues, motorskill issues, and sometimes eye issues. They need to address all of

those things together so that your child doesn't get frustrated. Aspie kids

usually get real frustrated if they can't do something right and they just shut

down instead of trying again. Make sure they address everything that you think

your son needs to succeed. They say to take someone with you to the IEP meetings

so you have someone on your side of the table for support.

If you live in the US, most states have services for special needs kids and you

can get medical cards for him because of his special needs. they don't go by

your salaries.

This group can lead you in the right direction and there are all kinds of web

sites that you can look up info on.Just do a search for Aspergers and you will

get a whole list.

Good Luck,

Sally in PA

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Thanks for the input Sally. I am gonna do as much studying on this as I can to

make heads or tails of it all.

Hi ,

When I read your other post to Gail, the book that comes to my mind is The Out

Of Sync Child. and right now I can't remember the Author. I read it shortly

after my son was DXed and it really helped me put everything into perspective.

It sounds like you are on the right track and the school is helping you, that

means alot.

Take Care,

Sally

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Thanks for the welcome Des. That manual does suck major. lol I am taking

things into my own hands now and hoping to get somewhere with it all.

Welcome to the group :) First off.. take a deep breath and

sit on the manual! LOL Reason I say that, I think those things

confuse me more than help. Why is it going to take until March to

get IQ tests results back? Did your school give you an anxiety and

Aspergers Dx? gee.. didn't know schools gave those things out! *said

thick with sarcasm* Sorry.. just sounds as if you got handed alot

and sent on your way with no support or information. Unfortunately

quite common.

Do you have your son with a Psychologist on the outside? Testing

done there? My Pediatrician is good at the medical stuff.. but not

much help with the rest of the psychological things. Have who ever

gave you the Dx some printed info to hand to him maybe.

Either way... you're in the right place and amongst friends now :)

DES

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Do not worry Des, I am totally not offended. All the extra titles are awesome

and should totally help out. Appreciate it.

Don't mind me ! I apologize if I seem harsh with the

comments... like I said.. just wish they would hand out MORE

information than just a disability manual.

I've got several books that I found useful and I also agree on the

Books by Tony Attwood (don't own any but have read alot of his).

" Asperger Syndrome and Sensory Issues

Practical Solutions for Making Sense of the World "

by Myles *and several other ppl*

" Asperger Syndrome and Difficult Moments "

by Myles and Jack Southwick

and for Educational info...

" Teaching the Tiger "

by Marilyn P. Dornbush, PhD.

Sheryl K Pruitt, M.Ed.

There are also alot of resources available on the Internet. Depends

specifically on what you are looking for.. ie. IEP solutions,

Aspergers info itself, dealing with Anxiety etc.

good luck :)

DES

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Thanks for the welcome .

I am writing down all these titles you are all giving me. I plan on researching

all of them and getting some major clue as to what is going on. Might trash

that confusing maual though! lol

Hi

Welcome to the group!! I was where you were a year ago come February so I

completely understand how your feel. I still to this day have some of those

feelings.

First of all I would try and get a copy of Tony Attwoods book regarding

Autism. another good book that helped me was called " The Spirited Child. "

can't remember the author off hand right now. I would also try to join your

local Austism Society as they are a wonderful source of information and

support.

But first and foremost you need to come to the realization that this wasn't

your fault, that you are a terrific mom and that sometimes life throws us a

curve ball or two. You will slowly but surely begin to understand your

child better and find what works for you. Just try everything and anything

offered for your son because its a lot of trial and error.

We are always here to talk and to help so ask any questions that you may

have or if you are having a bad day we make a great sounding board.

Once again welcome to the group and I hope that we can be of some help and

comfort for you.

in Ajax

Mom to Logan (5 soon to be 6) HFA, PDD-Nos

And a new little one on the way

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Thanks for the welcome .

I am writing down all these titles you are all giving me. I plan on researching

all of them and getting some major clue as to what is going on. Might trash

that confusing maual though! lol

Hi

Welcome to the group!! I was where you were a year ago come February so I

completely understand how your feel. I still to this day have some of those

feelings.

First of all I would try and get a copy of Tony Attwoods book regarding

Autism. another good book that helped me was called " The Spirited Child. "

can't remember the author off hand right now. I would also try to join your

local Austism Society as they are a wonderful source of information and

support.

But first and foremost you need to come to the realization that this wasn't

your fault, that you are a terrific mom and that sometimes life throws us a

curve ball or two. You will slowly but surely begin to understand your

child better and find what works for you. Just try everything and anything

offered for your son because its a lot of trial and error.

We are always here to talk and to help so ask any questions that you may

have or if you are having a bad day we make a great sounding board.

Once again welcome to the group and I hope that we can be of some help and

comfort for you.

in Ajax

Mom to Logan (5 soon to be 6) HFA, PDD-Nos

And a new little one on the way

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  • 2 years later...

Good Morning Everybody,Yes it is still morning here in Alaska.I want to take a quick moment to introduce myself to all of you.My name is Tenpa. I live in Eagle River Alaska. I'm 46 and HIV+. Oh yeah, I'm Gay (can't leave that part out). I work full time for an AIDS assistance and prevention organization and part time as a coordinator for clinic focusing on AIDS prevention/cure.I also publish a blog called QueerFrontier . The goal of the blog is to explore and describe Queer Culture here in Alaska. The blog aims not only to inform but also to entertain, shock and give pause for thought. Not every article on the blog deals with HIV/AIDS but the issue is addressed regularly and source material has a constant presence.Articles other than those related to HIV/AIDS usually discus national/global issues regarding free speech and access to information. Which I feel are vital issues in the battle against HIV/AIDS and other issues related to the GBLT community.I've joined this group so that you on the "outside" (as we say here in Alaska) know that we exist. So that we can stay informed about you and you about us. I've posted a picture of myself here so you can put a face with the name. All of you are welcome to communicate with me either through QueerFrontier or via my email tenpa@...My very best to all of you. Stay healthy, happy, and kind.Tenpa

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