Just joined

[Guest guest]

Hi

Mike! Welcome to our happy family. We love for it to grow! I’m

a/k/a De, in GA. Finished 48 wk treatment about a year ago. Clear so far,

more results next week. We’ll help you sort it all out if you haven’t

already. You’ve had time to do some research.

De

Just joined

Hi!

My name is Mike,and I thank you for allowing me to

become a member

of this group.

I have to admit. The group name is kinda

" catchy " . I couldn't resist

applying for membership.

I am not here evry day. But,will try to keep up on

posting when I do

get online.

As for my hvc history. I was diagnosed with hep c

last summer.Or

early fall.Was found out after giving the va

clinic permission to

test for it. I figured, " why not? " after

knowing my history during my

70's military days. Ever since then,I have been

awaiting my next

appointment. I finally got an appointment at the

local va clinic for

the 23rd. I think it is.So,that's where I stand

with it. Was either

as air gun which was used for giving us our shots

back in those

military fays,or from another version of hep I had

back in 1973.

Anyways,glad to be here,and look forwardto the

fellowship...

Mike

[Guest guest]

I am origionally from Maine.But,been south since 1989. I am currently

in Winston-salem,NC. I was in the Army from 1970-1975..

Mike

> >Hi!

> >

> >My name is Mike,and I thank you for allowing me to become a member

> >of this group.

> >

> >I have to admit. The group name is kinda " catchy " . I couldn't

resist

> >applying for membership.

> >

> >I am not here evry day. But,will try to keep up on posting when I

do

> >get online.

> >

> >As for my hvc history. I was diagnosed with hep c last summer.Or

> >early fall.Was found out after giving the va clinic permission to

> >test for it. I figured, " why not? " after knowing my history during

my

> >70's military days. Ever since then,I have been awaiting my next

> >appointment. I finally got an appointment at the local va clinic

for

> >the 23rd. I think it is.So,that's where I stand with it. Was either

> >as air gun which was used for giving us our shots back in those

> >military fays,or from another version of hep I had back in 1973.

> >

> >Anyways,glad to be here,and look forwardto the fellowship...

> >

> >Mike

>

[Guest guest]

Mike Hello and welcome to our family. It is a wild and crazy group(in a good way). If you need support we are here, info we got that too. This is the best place. It has helped all of us in different ways. I hope you enjoy our family. Mike <nc_yankee89@...> wrote: Hi!My name is Mike,and I thank you for allowing me to become a member of this group.I have to admit. The group name is kinda "catchy". I couldn't resist applying for membership.I am not here evry day. But,will try to keep up on posting when I do get online.As for my hvc history. I was diagnosed with hep c last summer.Or early fall.Was found out after giving the va clinic permission to test for it. I figured,"why not?" after knowing my history during my 70's military days. Ever since then,I have been awaiting

my next appointment. I finally got an appointment at the local va clinic for the 23rd. I think it is.So,that's where I stand with it. Was either as air gun which was used for giving us our shots back in those military fays,or from another version of hep I had back in 1973.Anyways,glad to be here,and look forwardto the fellowship...Mike

Photos – Showcase holiday pictures in hardcover Photo Books. You design it and we’ll bind it!

[Guest guest]

I hope you got the one email I sent you with an article about genotypes.

Gail

-----Original Message-----From: Hepatitis CSupportGroupForDummies [mailto:Hepatitis CSupportGroupForDummies ]On Behalf Of dannegrlSent: January 13, 2006 9:17 PMHepatitis CSupportGroupForDummies Subject: Re: Just joined

Mike Hello and welcome to our family. It is a wild and crazy group(in a good way). If you need support we are here, info we got that too. This is the best place. It has helped all of us in different ways. I hope you enjoy our family.

Mike <nc_yankee89@...> wrote:

Hi!My name is Mike,and I thank you for allowing me to become a member of this group.I have to admit. The group name is kinda "catchy". I couldn't resist applying for membership.I am not here evry day. But,will try to keep up on posting when I do get online.As for my hvc history. I was diagnosed with hep c last summer.Or early fall.Was found out after giving the va clinic permission to test for it. I figured,"why not?" after knowing my history during my 70's military days. Ever since then,I have been awaiting my next appointment. I finally got an appointment at the local va clinic for the 23rd. I think it is.So,that's where I stand with it. Was either as air gun which was used for giving us our shots back in those military fays,or from another version of hep I had back in 1973.Anyways,glad to be here,and look forwardto the fellowship...Mike

Photos – Showcase holiday pictures in hardcoverPhoto Books. You design it and we’ll bind it!

[Guest guest]

Welcome to the group ! I hope you feel better ?

just joined

I just joined, not sure what the member ID is. Want to say hi, I feltsick all day but think I'm going to go to my yoga class anyway. so getback with you all later, and hope to be friends! :-)

[Guest guest]

welcome p miner.

Talk is cheap. Use Messenger to make PC-to-Phone calls. Great rates starting at 1¢/min.

[Guest guest]

Welcome Sondra, it will be nice to have

your perspective here

Charlotte

Mom to 12 Aspergers/ADHD and Kallmann’s

Syndrome

From: Autism and Aspergers Treatment [mailto:Autism and Aspergers Treatment ] On Behalf Of sondra

Sent: Saturday, May 27, 2006 1:39

AM

Autism and Aspergers Treatment

Subject: just

joined

Just joined

adult with autism dx but refer to self as HFA. I to live in ohio.

Sondra

[Guest guest]

Hi Sondra!

Where in Ohio? My whole family is from Canton.

I live in Colorado. I have a 9yr old daughter with

HFA.

E.

--- sondra <hfa2@...> wrote:

> Just joined

> adult with autism dx but refer to self as HFA. I to

> live in ohio.

> Sondra

>

>

>

>

>

>

>

" Insanity runs in my family. It practically gallops. "

Cary Grant

__________________________________________________

[Guest guest]

Hi Sondra!

Where in Ohio? My whole family is from Canton.

I live in Colorado. I have a 9yr old daughter with

HFA.

E.

--- sondra <hfa2@...> wrote:

> Just joined

> adult with autism dx but refer to self as HFA. I to

> live in ohio.

> Sondra

>

>

>

>

>

>

>

" Insanity runs in my family. It practically gallops. "

Cary Grant

__________________________________________________

[Guest guest]

I have a 4 yr old son with possibly autism (evaluation done on munday) and I also live in ohio...columbus. I am also new to the group but welcome!!!! Sharinsondra <hfa2@...> wrote: Just joined adult with autism dx but refer to self as HFA. I to live in ohio.Sondra __________________________________________________

[Guest guest]

Hi I just joined and I wanted to say hello. I started on my weight loss program some time back now but got side tracked, I am hoping to re-focus and really do well in the upcoming months. Getting side tracked is easy to do:) But what better day then today to get started again?This looked like an active, supportive group so I thought I would give it a try.It really and truly is a great group. We are all doing it our own way and have our own opinions as to what works and what dosen't but the thing is the support is here no matter what path you chose to take. We are all going toward the same goal...weight loss. The ladies here has shared a great deal of links and hints to help me and have always been there to cheer me on and help keep my spirits up. I hope we can do the same for you.I do atkins and am looking to loose well over 100lbs with diet and exercise. Right now I go work out about 4-5 times a week and I am trying to incorporate a little more.Sounds like you are on the right path. I do o.k. with my waters, except I probably slack off a little with that on the weekends with all the running around I do, and I need to focus much more on my plan.I was doing great with my water but I have slacked a bit too. I'm still drinking it but it wouldn't hurt to get in a couple more glasses.Thought I would drop a quick note to say hello.Keep us posted.Leigh

[Guest guest]

Hi Leigh

I am mary Tazz Towe and I have 200 pounds to lose. Hope you enjoy us and

know that we will you.

Your Friend

T.

In sunny Florida

[Guest guest]

Leigh welcome. Sounds like your on the right track.

NH... Mom to Abby Liz 10/94 Anne 7/99

[Guest guest]

>Hi I just joined and I wanted to say hello. I started on my weight

loss program some time back now but got side tracked, I am hoping to re-

focus and really do well in the upcoming months.

Welcome Leigh

I do o.k. with my waters, except I probably slack off a little with

that on the weekends with all the running around I do, and I need to

focus much more on my plan.

Leigh

I think alot of us here on this list have a problem with getting all our water

in.. I know I do... Look forward to hearing more from you..

__________________________________________________

[Guest guest]

Your life does sound scary, to know you family history, no health

insurance and someone special depending on you! I do hope this is over

for you and the rest of your life is smoother sailing. I know once you

have been diagnosed with the " c " word, people run, but you get more

respect at the Doctor's office and at the Hospital.

Dawn

>

> Hi, i'm new. I was diagnosed with lung cancer and had my left lung

> removed in July. I'm 49,single Mom and I live in South Dakota with my

> daughter. I have applied for SSI but have been waiting since Jan. So

I

> have no medical coverage and that is scary! I adopted my children,

they

> have disabilities so it is a struggle to try to get them to

understand

> all of this. Their only experiences with cancer were my 2 sisters who

> both died from cancer within a few short months of eachother. I have

> noticed that when you get a cancer diagnosis all of your " friends "

> forget you, I think out of fear and just not knowing what to do. And

> that's sad because that is when you truly need them the most!

>

[Guest guest]

i am sorry for everything that you have gone through but you sound like an absolutely wonderful person and i am glad you joined our group. you will meet lots of great people here. hope to hear from you again soon. evelynlyleanme <lharms@...> wrote: Hi, i'm new. I was diagnosed with lung cancer and had my left lung removed in July. I'm 49,single Mom and I live in South Dakota with my daughter. I have applied for SSI but have

been waiting since Jan. So I have no medical coverage and that is scary! I adopted my children, they have disabilities so it is a struggle to try to get them to understand all of this. Their only experiences with cancer were my 2 sisters who both died from cancer within a few short months of eachother. I have noticed that when you get a cancer diagnosis all of your "friends" forget you, I think out of fear and just not knowing what to do. And that's sad because that is when you truly need them the most!

How low will we go? Check out Messenger’s low PC-to-Phone call rates.

[Guest guest]

i had the same experience when i was very sick with

MS. Where were my friends??? I had to make some new

ones quick. God delivered some new wonderful people to

me almost right away. I was fortunate- and you have

this group and this is a blessing. We are here for

you. I am sorry for all of your hardship. Have you

any family nearby?

affiliated with a religious group? time to get all the

help you can.

I will keep you in my heart and prayers,

jackie

--- evelyn <peaches0106@...> wrote:

> i am sorry for everything that you have gone through

> but you sound like an absolutely wonderful person

> and i am glad you joined our group. you will meet

> lots of great people here. hope to hear from you

> again soon.

>

> evelyn

>

> lyleanme <lharms@...> wrote:

> Hi, i'm new. I was diagnosed with lung

> cancer and had my left lung removed in July. I'm

> 49,single Mom and I live in South Dakota with my

> daughter. I have applied for SSI but have been

> waiting since Jan. So I have no medical coverage and

> that is scary! I adopted my children, they have

> disabilities so it is a struggle to try to get them

> to understand all of this. Their only experiences

> with cancer were my 2 sisters who both died from

> cancer within a few short months of eachother. I

> have noticed that when you get a cancer diagnosis

> all of your " friends " forget you, I think out of

> fear and just not knowing what to do. And that's sad

> because that is when you truly need them the most!

>

>

>

>

> ---------------------------------

> How low will we go? Check out Messenger’s low

> PC-to-Phone call rates.

__________________________________________________

[Guest guest]

Jenn, Welcome. Your feelings are perfectly normal. I myself went through that range of emotions for quite a long time when my dd was first diagnosed. I live in a small rural community and was desperate for someone, anyone to understand how I felt and what we were going through, to let me know that I was not going crazy and I was not the only one! I found that here in this wonderful community online. So many caring, intelligent, wonderful people here who DO understand. To the navigating.... well I have been at this over a year now and I am still learning/seeing new things all the time. But in the beginning (and now) I found many of the articles at www.coultervideo.com full of information in a format that is easy to understand. I used to pay medical claims and worked at the hospital as well so I am capable of understanding the medical terminology used in many sources of information but when I am

talking about my child and I am stressed, I prefer the "english" translation! lol I found this at this site as well as some great info on other links and sites to find out more on certain topics. Well, that is all I have to offer at the moment. Just remember, not you, your husband or your son are at fault... some things just happen. It is not something you did or did not do! Just love him and accept him for the wonderful gift he is, like your other kids and take it one day at a time! Good luck and God bless! DeeDee Kraus <JennK949702@...> wrote: Hello All,I just joined this group so I figured that I should introduce myself. My name is Jenn and I am the mother of 4 beautiful children, h 11, Karilin 9, 4, and Makayla 3. My son as just been diagnosed with Asperger's and to say the least I am in a million emotions about it right now. He is currently undergoing a lot of testing which I guess is routine but I know that none of those tests will tell me what I really want to know which is why. Why him? Why me? What happened that caused this? Why did I wait so long to seek help for a problem that I seen for more then 2 years now? Where do I go from here and how in the world do I navigate a sea of information? I am even second guessing the diagnoses which I have suspected for a long time and wasn't at all surprised to hear....

but I guess it's normal. I don't even know where to start with this... I am totally lost which is why I am here. I am hoping that those of you who are going through this can offer information and support.Thanks..Jenn

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Jenn,

My son was diagnosed on the spectrum just a few months ago. I can

completely relate. We are still in that WHAT? phase. I knew what the

Dx would be but it didnt make it any easier when they said those

couple of words " Your son has Autism " . It will get easier and it

takes a bit of time to figure out what will be best for your son,

whether its at home or in a school, etc. but I have found since I

started this journey that there is nothing like the parents of kids

on the spectrum. The amazing patience, kindness, love and

willingness to reach out to others that they have is astonishing to

me. While I hope that at some point I too will have all those things

right now I am still lost in the maze of figuring where to go from

here. While I know that this isnt any advice per se but I just

wanted to let you know that you are not alone in what you are going

thru and it is great of you to reach out.

Heidi

>

>

[Guest guest]

Hi Jenn,

I'm a 26 year-old adult with Asperger's Syndrome studying in a Ph.D.

program at Penn State. While I know it's not the same as a parent seeing

her child receive a diagnosis of AS, I did go through a lot of why's,

what's, and how's, similar to what you're experiencing now when I

self-diagnosed with Asperger's Syndrome in 1999 during my freshman year

in college. (I received a clinical diagnosis that confirmed my

self-diagnosis in 2005.) I came to learn about having AS accidentally

when I read a book about autism, " Mindblindness " by Simon Baren-Cohen,

for an class called Minds and Machines. I had slipped through the cracks

for many years without people recognizing AS, and I really started

questioning why I hadn't found out earlier and why did I have it and

where would I go from there and what did I need to do differently with

my life now that I knew (and how would I do things differently), and

what would people think of me if they knew I had autism, and hundreds of

other doubts and confusions. It took me about a year or a year and a

half before I started realizing that I really needed to read and learn a

lot more about autism and meet other people out there on the spectrum.

As the years have gone further by, I've come to accept and embrace who I

am and acknowledge beyond just accepting having AS that I actively

wanted to do what I could to help others out there. I found my calling,

if you will, in speaking about my experiences to parent groups and

conferences, participating in autism spectrum advocacy, and conducting

research in assistive technologies for people with neurological and

developmental disabilities (including autism spectrum disorders).

I know that right now you probably feel like you're in a very scary

place of uncertainty. It is a huge thing to learn suddenly that your

child has an autism spectrum disorder; don't let anyone try to convince

you otherwise. I'm not a parent, but I know a lot of parents of kids on

the spectrum and I can at least try to imagine the many mixed emotions

(guilt, frustration, confusion, wonder, sadness, relief, etc.) parents

must experience as they go through the diagnostic process. I know that

it's easy to say and hard to do sometimes, but I think it will help

immensely to focus on the short-term. Look for what strides you can make

right now and in bunches further down the line; if you give it your all

and make your strongest effort to help with challenges he

encounters at each interval (as you will no doubt do), the future will

take care of itself. If you try to worry about the next 20 years, it can

become considerably overwhelming because that's a huge amount of time

and a lot of things can and will happen during that period of time. I

know that anyone who tried to predict where I'd be as an adult when I

was 9 ended up being quite wrong. They believed that I would never go

onto college because of my social troubles; I'm currently a few years

short of a doctoral degree. I think that it will also help to talk other

parents whose kids were just recently diagnosed. Additionally, I know

that many parents have told me in the past that it's also been very

reassuring to talk to adults on the spectrum who faced obstacles and

challenges as they've grown up but have nonetheless overcome them

through high degrees of perseverance coupled with the right support from

family, friends, and professionals. I struggled a lot at times growing

up. I was bullied a great deal and faced huge challenges in making

friends and fitting in. Yet, I turned out alright. I learned how to

adapt and make friends as I matured.

I did also want to let you (and the others) know that I'm helping to

coordinate a new autism spectrum advocacy and support organization

called the Autistic Self-Advocacy Network (ASAN). We're working to

establish mentoring and support services that will include launching

social support groups, mentoring of kids and teens on the spectrum

(potentially by adults on the spectrum), educational advocacy and

consulting, and a speaker's bureau of adults on the spectrum speaking to

businesses, schools, and organizations about their experiences living

with an autism spectrum disorder. <http://www.autisticselfadvocacy.com>.

Feel free to email me off list any time you like to chat about my

experiences or your questions and concerns. The same also goes for any

others who might be interested in talking to me sometime. Let me know

also if you I could point you in the right direction for finding books

and other resources.

- on, adult with Asperger's Syndrome

Ph.D. Candidate in Information Sciences & Technology

The College of Information Sciences & Technology

The Pennsylvania State University | University Park, PA 16802

(www.ist.psu.edu)

Pennsylvania Regional Director & Board Member

The Autistic Self-Advocacy Network (www.autisticselfadvocacy.com)

Kraus wrote:

>

> Hello All,

>

> I just joined this group so I figured that I should introduce

> myself. My name is Jenn and I am the mother of 4 beautiful

> children, h 11, Karilin 9, 4, and Makayla 3. My son

> as just been diagnosed with Asperger's and to say the least I

> am in a million emotions about it right now. He is currently

> undergoing a lot of testing which I guess is routine but I know that

> none of those tests will tell me what I really want to know which is

> why. Why him? Why me? What happened that caused this? Why did I

> wait so long to seek help for a problem that I seen for more then 2

> years now? Where do I go from here and how in the world do I

> navigate a sea of information? I am even second guessing the

> diagnoses which I have suspected for a long time and wasn't at all

> surprised to hear.... but I guess it's normal. I don't even know

> where to start with this... I am totally lost which is why I am

> here. I am hoping that those of you who are going through this can

> offer information and support.

>

> Thanks..

> Jenn

>

>

[Guest guest]

Jenn,

You really aren't alone in terms of the late diagnosis: I didn't

have my daughter tested until she was in first grade, alerted by a

magazine article. If it hadn't been for that, the school might never

have tested her, I'm convinced! Her kindergarten teacher had simply

said, " well, we're all different! I was considered different, too. "

Anyway there are many treatments, and I recommend RDI for older,

high functioning kids (others in this forum may have other

recommendations).

Different topic: I have a list I can send you if you e-mail me that

includes all the positives of this disorder. For example, many of

these kids are very sensitive, are very honest and authentic (and

isn't that hard to find in this world?), can form very strong and

lasting attachments (as opposed to what the world thinks), have

excellent attention to detail and notice things that we would never

notice otherwise (I'm convinced my daughter will be an excellent

proofreader one day!)

As far as I am concerned, my job is to help the world appreciate her

and to hang in there helping her adjust to the world as well.

-- M

> Hello All,

>

> I just joined this group so I figured that I should introduce

> myself. My name is Jenn and I am the mother of 4 beautiful

> children, h 11, Karilin 9, 4, and Makayla 3. My son

> as just been diagnosed with Asperger's and to say the least

I

> am in a million emotions about it right now. He is currently

> undergoing a lot of testing which I guess is routine but I know

that

> none of those tests will tell me what I really want to know which

is

> why. Why him? Why me? What happened that caused this? Why did I

> wait so long to seek help for a problem that I seen for more then

2

> years now? Where do I go from here and how in the world do I

> navigate a sea of information? I am even second guessing the

> diagnoses which I have suspected for a long time and wasn't at all

> surprised to hear.... but I guess it's normal. I don't even know

> where to start with this... I am totally lost which is why I am

> here. I am hoping that those of you who are going through this can

> offer information and support.

>

> Thanks..

> Jenn

>

>

>

>

>

>

> ---------------------------------

> Stay in the know. Pulse on the new .com. Check it out.

>

[Guest guest]

Thanks DeeDee for your kind words and information. I am glad I found this group... I am sure it's going to be such a comfort to know that there are people who actually know what I am going through!

Jenn

The years that a woman subtracts form her age are not lost. They are added to other women's.~ Diane de Poitiers

Re: just joined

Jenn, Welcome. Your feelings are perfectly normal. I myself went through that range of emotions for quite a long time when my dd was first diagnosed. I live in a small rural community and was desperate for someone, anyone to understand how I felt and what we were going through, to let me know that I was not going crazy and I was not the only one! I found that here in this wonderful community online. So many caring, intelligent, wonderful people here who DO understand.

To the navigating.... well I have been at this over a year now and I am still learning/seeing new things all the time. But in the beginning (and now) I found many of the articles at www.coultervideo.com full of information in a format that is easy to understand. I used to pay medical claims and worked at the hospital as well so I am capable of understanding the medical terminology used in many sources of information but when I am talking about my child and I am stressed, I prefer the "english" translation! lol I found this at this site as well as some great info on other links and sites to find out more on certain topics.

Well, that is all I have to offer at the moment. Just remember, not you, your husband or your son are at fault... some things just happen. It is not something you did or did not do! Just love him and accept him for the wonderful gift he is, like your other kids and take it one day at a time!

Good luck and God bless!

DeeDee Kraus <JennK949702comcast (DOT) net> wrote:

Hello All,I just joined this group so I figured that I should introduce myself. My name is Jenn and I am the mother of 4 beautiful children, h 11, Karilin 9, 4, and Makayla 3. My son as just been diagnosed with Asperger's and to say the least I am in a million emotions about it right now. He is currently undergoing a lot of testing which I guess is routine but I know that none of those tests will tell me what I really want to know which is why. Why him? Why me? What happened that caused this? Why did I wait so long to seek help for a problem that I seen for more then 2 years now? Where do I go from here and how in the world do I navigate a sea of information? I am even second guessing the diagnoses which I have suspected for a long time and wasn't at all surprised to hear.... but I guess it's normal. I don't even know where to start with this... I am totally lost which is why I am here. I am hoping that those of you who are going through this can offer information and support.Thanks..Jenn

Stay in the know. Pulse on the new .com. Check it out.

[Guest guest]

Thanks Heidi, If you don't mind me asking, how old is your son? How long did you suspect something was wrong before you got the diagnoses? Is he in school?

My son is not yet in preschool because I didn't think with the way he acted (before I really knew why) that I could send him.... I can only imagine what I would go through with the school but now his Doc says that I should get him into school right away and I agree but I don't know where to go... I know I have been dealing with the child study team for my oldest child who has a "language based learning disability" and they are a mess and they most certainly do not like seeing me : ) I have made a nuisance of myself advocating for him. I am afraid they will not know how to handle him. I really wish that there was a school near me for this.

The years that a woman subtracts form her age are not lost. They are added to other women's.~ Diane de Poitiers

Re: just joined

Jenn,My son was diagnosed on the spectrum just a few months ago. I can completely relate. We are still in that WHAT? phase. I knew what the Dx would be but it didnt make it any easier when they said those couple of words "Your son has Autism". It will get easier and it takes a bit of time to figure out what will be best for your son, whether its at home or in a school, etc. but I have found since I started this journey that there is nothing like the parents of kids on the spectrum. The amazing patience, kindness, love and willingness to reach out to others that they have is astonishing to me. While I hope that at some point I too will have all those things right now I am still lost in the maze of figuring where to go from here. While I know that this isnt any advice per se but I just wanted to let you know that you are not alone in what you are going thru and it is great of you to reach out. Heidi>>

[Guest guest]

,

Thanks so much for writing me and your right it is so comforting to talk to an adult on the spectrum especially when that person seems to have done EXTREMELY well for himself!

Your words were exactly what I needed to hear.... and your right, I was getting wrapped up in 20 years from now and I really have to take a step back and get through each day with him. The hardest thing I think to overcome is the guilt... I know EVERYONE says it's no ones fault but still I can't help but feeling it... I tried for 5 years to get pregnant with him and when I finally did I had an extremely complicated pregnancy and he was delivered 5 weeks early with a true knot in his cord and was kept in the NICU for blood sugar issues among other things. I guess I feel like I pushed too hard... tempted fate too many times. I was mentally prepared for some sort of physical birth defect since they tend to run in my family but never in my life would I have expected this. As horrible as I know this is going to sound I have to say that my sister had a baby a few months ago with cleft lip and some days I almost wish that I could trade places with her because there is defined treatment for that and it over... but on other days I sit online and read about aspergers and think what's the problem? IQ isn't an issue here so really what he has been diagnosed with is being a non-conformist? I guess I really just have a lot to learn about this. I just hate the thought of my child having to struggle through life.

I want to thank you again for sending me an e mail and I look forward to talking with you in the future.

Thanks,

Jenn

The years that a woman subtracts form her age are not lost. They are added to other women's.~ Diane de Poitiers

Re: just joined

Hi Jenn,I'm a 26 year-old adult with Asperger's Syndrome studying in a Ph.D. program at Penn State. While I know it's not the same as a parent seeing her child receive a diagnosis of AS, I did go through a lot of why's, what's, and how's, similar to what you're experiencing now when I self-diagnosed with Asperger's Syndrome in 1999 during my freshman year in college. (I received a clinical diagnosis that confirmed my self-diagnosis in 2005.) I came to learn about having AS accidentally when I read a book about autism, "Mindblindness" by Simon Baren-Cohen, for an class called Minds and Machines. I had slipped through the cracks for many years without people recognizing AS, and I really started questioning why I hadn't found out earlier and why did I have it and where would I go from there and what did I need to do differently with my life now that I knew (and how would I do things differently), and what would people think of me if they knew I had autism, and hundreds of other doubts and confusions. It took me about a year or a year and a half before I started realizing that I really needed to read and learn a lot more about autism and meet other people out there on the spectrum. As the years have gone further by, I've come to accept and embrace who I am and acknowledge beyond just accepting having AS that I actively wanted to do what I could to help others out there. I found my calling, if you will, in speaking about my experiences to parent groups and conferences, participating in autism spectrum advocacy, and conducting research in assistive technologies for people with neurological and developmental disabilities (including autism spectrum disorders).I know that right now you probably feel like you're in a very scary place of uncertainty. It is a huge thing to learn suddenly that your child has an autism spectrum disorder; don't let anyone try to convince you otherwise. I'm not a parent, but I know a lot of parents of kids on the spectrum and I can at least try to imagine the many mixed emotions (guilt, frustration, confusion, wonder, sadness, relief, etc.) parents must experience as they go through the diagnostic process. I know that it's easy to say and hard to do sometimes, but I think it will help immensely to focus on the short-term. Look for what strides you can make right now and in bunches further down the line; if you give it your all and make your strongest effort to help with challenges he encounters at each interval (as you will no doubt do), the future will take care of itself. If you try to worry about the next 20 years, it can become considerably overwhelming because that's a huge amount of time and a lot of things can and will happen during that period of time. I know that anyone who tried to predict where I'd be as an adult when I was 9 ended up being quite wrong. They believed that I would never go onto college because of my social troubles; I'm currently a few years short of a doctoral degree. I think that it will also help to talk other parents whose kids were just recently diagnosed. Additionally, I know that many parents have told me in the past that it's also been very reassuring to talk to adults on the spectrum who faced obstacles and challenges as they've grown up but have nonetheless overcome them through high degrees of perseverance coupled with the right support from family, friends, and professionals. I struggled a lot at times growing up. I was bullied a great deal and faced huge challenges in making friends and fitting in. Yet, I turned out alright. I learned how to adapt and make friends as I matured.I did also want to let you (and the others) know that I'm helping to coordinate a new autism spectrum advocacy and support organization called the Autistic Self-Advocacy Network (ASAN). We're working to establish mentoring and support services that will include launching social support groups, mentoring of kids and teens on the spectrum (potentially by adults on the spectrum), educational advocacy and consulting, and a speaker's bureau of adults on the spectrum speaking to businesses, schools, and organizations about their experiences living with an autism spectrum disorder. <http://www.autisticselfadvocacy.com>.Feel free to email me off list any time you like to chat about my experiences or your questions and concerns. The same also goes for any others who might be interested in talking to me sometime. Let me know also if you I could point you in the right direction for finding books and other resources. - on, adult with Asperger's SyndromePh.D. Candidate in Information Sciences & TechnologyThe College of Information Sciences & TechnologyThe Pennsylvania State University | University Park, PA 16802 (www.ist.psu.edu)Pennsylvania Regional Director & Board MemberThe Autistic Self-Advocacy Network (www.autisticselfadvocacy.com) Kraus wrote:>> Hello All,>> I just joined this group so I figured that I should introduce> myself. My name is Jenn and I am the mother of 4 beautiful> children, h 11, Karilin 9, 4, and Makayla 3. My son> as just been diagnosed with Asperger's and to say the least I> am in a million emotions about it right now. He is currently> undergoing a lot of testing which I guess is routine but I know that> none of those tests will tell me what I really want to know which is> why. Why him? Why me? What happened that caused this? Why did I> wait so long to seek help for a problem that I seen for more then 2> years now? Where do I go from here and how in the world do I> navigate a sea of information? I am even second guessing the> diagnoses which I have suspected for a long time and wasn't at all> surprised to hear.... but I guess it's normal. I don't even know> where to start with this... I am totally lost which is why I am> here. I am hoping that those of you who are going through this can> offer information and support.>> Thanks..> Jenn>>

[Guest guest]

Hi Jenn,

Having lived a life of not fully conforming myself, I got a good laugh

out of your non-conformist thought. As serious as things are in life

when you have a neurological difference like AS/autism or know someone

who does, it can help so much to laugh about things and release tension.

Whether we are going through some struggles ourselves with having autism

or are a parent, family member, or friend of someone with autism, it

really in any of these cases helps so much to learn to laugh and smile.

I completely understand, however, how the guilt can be troubling you. I

imagine that my mother feels guilty about the fact that I have

Asperger's despite how I've managed to overcome some challenges since my

childhood. It's very tough because we struggle so much at times that I

know parents want to make it all better. When they can't they blame

themselves and feel guilty for the fact that we have autism. They know

in their heads that they didn't cause their child to have these

challenges and struggles, but they still feel responsible. I think here

is where it also helps to look at positive aspects of autism and focus

less on the negative. Many people with autism I know, both kids and

adults alike, are some of the kindest, gentlest, nicest people you'll

ever meet. We also tend to be honest, open-minded, free-spirited, and

thoughtful folks. Living with autism and raising children with it really

gives you a sense of compassion and deep understanding for differences

that all people have. You learn to embrace others' diversity and

specialness.

By the way, if you or anyone else might be interested, I wrote about

growing up and the challenges I faced in an article titled " Living with

Asperger's: One Man Tells His Story " for /The Record/ newspaper's

six-part special series on autism in NJ last month. The article is

available online at <http://urlcut.com/autismrecordstory>. The picture

is me chatting with Blaine, one of my grad student friends here at Penn

State. I heard that I was the talk of the town (so to speak) when the

story was published as a lot of family friends called about it.

- on, adult with Asperger's Syndrome

Ph.D. Candidate in Information Sciences & Technology

The College of Information Sciences & Technology

The Pennsylvania State University | University Park, PA 16802

(www.ist.psu.edu)

Pennsylvania Regional Director & Board Member

The Autistic Self-Advocacy Network (www.autisticselfadvocacy.com)

Jenn Kraus wrote:

>

> ,

>

> Thanks so much for writing me and your right it is so comforting to

> talk to an adult on the spectrum especially when that person seems to

> have done EXTREMELY well for himself!

> Your words were exactly what I needed to hear.... and your right, I

> was getting wrapped up in 20 years from now and I really have to take

> a step back and get through each day with him. The hardest thing I

> think to overcome is the guilt... I know EVERYONE says it's no ones

> fault but still I can't help but feeling it... I tried for 5 years to

> get pregnant with him and when I finally did I had an extremely

> complicated pregnancy and he was delivered 5 weeks early with a true

> knot in his cord and was kept in the NICU for blood sugar issues among

> other things. I guess I feel like I pushed too hard... tempted fate

> too many times. I was mentally prepared for some sort of physical

> birth defect since they tend to run in my family but never in my life

> would I have expected this. As horrible as I know this is going to

> sound I have to say that my sister had a baby a few months ago with

> cleft lip and some days I almost wish that I could trade places with

> her because there is defined treatment for that and it over... but on

> other days I sit online and read about aspergers and think what's the

> problem? IQ isn't an issue here so really what he has been diagnosed

> with is being a non-conformist? I guess I really just have a lot to

> learn about this. I just hate the thought of my child having to

> struggle through life.

>

> I want to thank you again for sending me an e mail and I look forward

> to talking with you in the future.

>

>

> Thanks,

> Jenn

> The years that a woman subtracts form her age are not lost. They are

> added to other women's.

> ~ Diane de Poitiers

>

> * Re: just joined

>

> Hi Jenn,

>

> I'm a 26 year-old adult with Asperger's Syndrome studying in a Ph.D.

> program at Penn State. While I know it's not the same as a parent

> seeing

> her child receive a diagnosis of AS, I did go through a lot of why's,

> what's, and how's, similar to what you're experiencing now when I

> self-diagnosed with Asperger's Syndrome in 1999 during my freshman

> year

> in college. (I received a clinical diagnosis that confirmed my

> self-diagnosis in 2005.) I came to learn about having AS accidentally

> when I read a book about autism, " Mindblindness " by Simon

> Baren-Cohen,

> for an class called Minds and Machines. I had slipped through the

> cracks

> for many years without people recognizing AS, and I really started

> questioning why I hadn't found out earlier and why did I have it and

> where would I go from there and what did I need to do differently

> with

> my life now that I knew (and how would I do things differently), and

> what would people think of me if they knew I had autism, and

> hundreds of

> other doubts and confusions. It took me about a year or a year and a

> half before I started realizing that I really needed to read and

> learn a

> lot more about autism and meet other people out there on the

> spectrum.

> As the years have gone further by, I've come to accept and embrace

> who I

> am and acknowledge beyond just accepting having AS that I actively

> wanted to do what I could to help others out there. I found my

> calling,

> if you will, in speaking about my experiences to parent groups and

> conferences, participating in autism spectrum advocacy, and

> conducting

> research in assistive technologies for people with neurological and

> developmental disabilities (including autism spectrum disorders).

>

> I know that right now you probably feel like you're in a very scary

> place of uncertainty. It is a huge thing to learn suddenly that your

> child has an autism spectrum disorder; don't let anyone try to

> convince

> you otherwise. I'm not a parent, but I know a lot of parents of

> kids on

> the spectrum and I can at least try to imagine the many mixed

> emotions

> (guilt, frustration, confusion, wonder, sadness, relief, etc.)

> parents

> must experience as they go through the diagnostic process. I know

> that

> it's easy to say and hard to do sometimes, but I think it will help

> immensely to focus on the short-term. Look for what strides you

> can make

> right now and in bunches further down the line; if you give it

> your all

> and make your strongest effort to help with challenges he

> encounters at each interval (as you will no doubt do), the future

> will

> take care of itself. If you try to worry about the next 20 years,

> it can

> become considerably overwhelming because that's a huge amount of time

> and a lot of things can and will happen during that period of time. I

> know that anyone who tried to predict where I'd be as an adult when I

> was 9 ended up being quite wrong. They believed that I would never go

> onto college because of my social troubles; I'm currently a few years

> short of a doctoral degree. I think that it will also help to talk

> other

> parents whose kids were just recently diagnosed. Additionally, I know

> that many parents have told me in the past that it's also been very

> reassuring to talk to adults on the spectrum who faced obstacles and

> challenges as they've grown up but have nonetheless overcome them

> through high degrees of perseverance coupled with the right

> support from

> family, friends, and professionals. I struggled a lot at times

> growing

> up. I was bullied a great deal and faced huge challenges in making

> friends and fitting in. Yet, I turned out alright. I learned how to

> adapt and make friends as I matured.

>

> I did also want to let you (and the others) know that I'm helping to

> coordinate a new autism spectrum advocacy and support organization

> called the Autistic Self-Advocacy Network (ASAN). We're working to

> establish mentoring and support services that will include launching

> social support groups, mentoring of kids and teens on the spectrum

> (potentially by adults on the spectrum), educational advocacy and

> consulting, and a speaker's bureau of adults on the spectrum

> speaking to

> businesses, schools, and organizations about their experiences living

> with an autism spectrum disorder.

> <http://www.autisticselfadvocacy.com

> <http://www.autisticselfadvocacy.com>>.

>

> Feel free to email me off list any time you like to chat about my

> experiences or your questions and concerns. The same also goes for

> any

> others who might be interested in talking to me sometime. Let me know

> also if you I could point you in the right direction for finding

> books

> and other resources.

>

> - on, adult with Asperger's Syndrome

>

> Ph.D. Candidate in Information Sciences & Technology

> The College of Information Sciences & Technology

> The Pennsylvania State University | University Park, PA 16802

> (www.ist.psu.edu)

>

> Pennsylvania Regional Director & Board Member

> The Autistic Self-Advocacy Network (www.autisticselfadvocacy.com)

>

> Kraus wrote:

> >

> > Hello All,

> >

> > I just joined this group so I figured that I should introduce

> > myself. My name is Jenn and I am the mother of 4 beautiful

> > children, h 11, Karilin 9, 4, and Makayla 3. My son

> > as just been diagnosed with Asperger's and to say the least I

> > am in a million emotions about it right now. He is currently

> > undergoing a lot of testing which I guess is routine but I know that

> > none of those tests will tell me what I really want to know which is

> > why. Why him? Why me? What happened that caused this? Why did I

> > wait so long to seek help for a problem that I seen for more then 2

> > years now? Where do I go from here and how in the world do I

> > navigate a sea of information? I am even second guessing the

> > diagnoses which I have suspected for a long time and wasn't at all

> > surprised to hear.... but I guess it's normal. I don't even know

> > where to start with this... I am totally lost which is why I am

> > here. I am hoping that those of you who are going through this can

> > offer information and support.

> >

> > Thanks..

> > Jenn

> >

> >

>

>