LONG but please read -- Re: Wow - a Group Milestone

[Guest guest]

jacquie,

this was absolutely beautiful. i love you. thank you.

love gina

" Something important to remember...we'll always be who we are. " - Mr.

[Guest guest]

Now I'm crying too. Thanks for giving us a place to meet, Jacquie. And thanks

to everyone else for being here.

Tuna

>>>>>>>>>>>>

Members send other members baby gifts, books,

supplements, you name it. The sharing and caring on this list go above and

beyond on a regular basis. And every new member who joins finds themselves

accepted into this family of friends with no judgements, just open arms. You all

make me cry. (Like I'm doing right now)

>>>>>>>>>>>>>>>>>>>Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

Jacqui,

That is just absolutely beautiful. I've only been here a short time, and I

already feel like I've found a home. NT parents DON'T understand. I had a

local playgroup mother tell me, just keep bringing him to playgroups, he'll

come around, my kid did. Well, I did keep trying, and all it did was make

me ANGRY at because he WOULDN'T stop crying, WOULDN'T play with the

other kids. Now I know why. Sure, I still keep trying, and sometimes we

actually make it through a whole playgroup, but if we don't, it's no biggie

anymore. I understand.

This group has made me see that the odd things he does, really are normal.

Well, for an autie anyway. We fit in here, someplace we didn't before.

And, as odd as it seems, it even goes beyond having autie kids. It's the

different backgrounds, sizes, geographic locations. I found other mothers

that also have trouble keeping up with their runners because of their size.

That means a lot to me. I see other moms that spend HOURS on the computer

instead of cleaning house. So it's not just that fits in here, I do

too. That means the world to me.

There are other lists that are advocating lists, and treatment lists, etc,

but you don't hear about the day to day stuff. Sure, I've gotten some ideas

on what may help do better, what books may be helpful from this

list, and that's important too, but right now, it's more important to me to

know that we're not alone, and that he's normal and I'm normal, at least in

some little corner of the world.

Thank you so much Jacqui for starting this list, and thank you everyone for

making it what it is.

BIG HUGS!!!!!!! (I'm a champion hugger IRL too!)

ellen

---

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[Guest guest]

Great post, Jacquie. And thank you for creating this list.

Salli

[Guest guest]

Oh my God I'm bawling my eyes out over this!

Thank you so much Jacquie for this list. Thank you for writing the

history of this list. It's much more beautiful than I even realized.

On the first day I realized that Jake was Autistic I was in shock, a

little bit relieved to find out what was going on but in genuine shock

also. On the second day I started to cry and be a bit terrified of the

future. My husband who is extremely rational and always lives " in the

present " was very accepting of all of it but was trying to get me not to

" over-react " . Excuse me? How can you under-react to this news? He

actually told me he didn't want Jake's Autism to turn into some kind of

a Munchausen-by-proxy thing for me. (He was afraid I would use Jake's

Autism to seek attention from friends and family - thanks honey!, thanks

a lot!) Anyway, I told him that same day that I thought I needed to

attend a support group. I was desperate for people to talk to, to find

out what it's like living with this situation. Thankfully my husband

came around and was much more supportive of me, and I also calmed down

and realized it wasn't the end of the world. So I went to Yahoo and

looked for an e-mail list. There are tons of them for Autism as you are

all probably aware, but the description for this one sounded like

exactly what I wanted. It has met my needs, hopes and expectations and

thensome! I don't know how I would have handled the last month and a

half without you all! So I found this list on the second day of even

hearing the word Autism. Actually they hadn't even mentioned the word

to me, I just could tell what they were talking about with the questions

I was being asked so I started researching it on my own. I found this

list before we actually got a diagnosis.

A week ago I attended my first local support group meeting here where I

live. It was just a social coffee where they talked about plans for

hosting some speakers and having a rally during April of next year. I

couldn't believe the difference between that group and this one! I

happened to sit across from the woman that knows exactly what to do

about everything having to do with Autism and she gave me phone numbers,

addresses, talked diet, supplements, therapies, and advocates to me

non-stop. When she found out I wasn't planning on getting an advocate

for our very first IEP this week she about had a heart attack. I just

haven't felt the need for one (yet). I was being pressured to join

committees and do all this stuff for this organization that I haven't

even joined yet. I'm not saying I'm not interested in some of these

things, but it was pretty daunting to me at that time. This group is a

breath of fresh air in contrast. I have to say that when someone writes

in about something that is driving them nuts and how they handled or

mishandled it or what they are worried about, or how they can't take it

anymore, I feel so relieved and so normal. I don't have to be perfect

here or pretend that I am, even to myself.

Sorry this went on so long. Of course I don't even know why I'm

apologizing anymore. I know you all feel the same way I do when I read

a long post..... " Good... write it out, spell it out... get it off your

chest! - it helps me too! "

I hope everyone is having a good one today. I sure am, for now! ;-)

~ Karin

The Hunny Family wrote:

>

>

> > I just realized we reached 100,000 posts on Nov 1!!! Wow!! I guess

> > this group is a proven success! Thanks Jacquie!

> >

> > Kerri

> >

>

>

> Hey, I rock! (still laughing over my faux pas on that post with ...)

>

> Seriously, though...

>

> The other day I was thinking about how it's been 3 years and 2 months since

> I started the group. I was remembering how afraid and lost and alone I felt

> when I did it, and how dismal everything looked from where I was standing.

> was JUST diagnosed; Marc was JUST off the boats; we were living in my

> ILs' basement; I was going through intense rapid cycling that was to be

> diagnosed a month later.

>

> I needed support and comfort and understanding and a sense of belonging, and

> no matter where I looked I couldn't find it. Marc was going through his own

> crap; my ILs were USELESS and in denial; the parent groups were filled with

> NTs. The autism support group int he area was three mothers with preteens

> who'd known each for years. The online 'support' groups only made me feel

> like a failure -- all the parents on them seemed so together and more

> interested in advocacy and knowledge than just getting through the day.

>

> I was DESPERATE. So I did this thing, hoping someone, ANYONE, would be out

> there feeling the same way and find me. Do you know how long it took to

> come up with the same 'Parenting Autism'? DAYS. I wanted a name that

> excluded advocacy from the get-go. 'Mothering Autism' was a forerunner for

> a bit, but that didn't seem fair.

>

> All I wanted was a group where parents of autistic kids could get together

> and talk about parenting the way NT parents got to.

>

> So well you all know the story of the next 3 years...the little mailing list

> that grew. :-)

>

> Over these last three years, I have gotten everything I wished for from this

> list, and maybe even given a bit back, too.

>

> Support -- this is the first place I go when I need advice or opinions on

> ANYTHING, from how to handle a new behaviour to what the hell colour to

> paint my walls. I know there is always someone with a new idea, a novel

> suggestion, or the relief to be able say, " oh my gosh, me too! " When I need

> courage, I go here. When I need strength, I get it from all of you. When

> I need wisdom, you all are the first place I look.

>

> Comfort -- I don't think I've gotten as many real life hugs in my whole my

> life as I've gotten in cyberspace from all of you. And contrary to what

> anyone else may think, they are just as warm and comforting and reassuring

> as the flesh-and-blood thing -- with out the awkward business of trying to

> stop hugging first. :-) There is comfort in knowing that I can say

> anything to this list and never be judged for my negative feelings, my

> anger, my hurt, and my rage. And there is comfort in hearing those from

> others, too -- the comfort of knowing I'm not as alone, NEVER as alone, as I

> once thought. And no two words are as precious as the ones I read so often

> here: " I know. "

>

> Understanding -- " I understand " are two more wonderful words. Can anyone in

> the NT world really understand what it's like to hate autism and love your

> autistic child? To hate the life you're living but to be unwilling to trade

> it for any other? Does anyone out there really understand what it's like to

> truly love unconditionally and the toll it takes on you? No. But WE DO.

> And that is more than I'd ever hoped to find.

>

> and Fellowship. The bonds I've seen form on this list are truly

> awe-inspiring. I feel like we are a team, spread across the world with one

> mission -- to be PARENTS supporting other parents. Those of you who've not

> been on the list for more than 6 months don't know what these amazing

> parents did for me last April. My computer, which I'd had since college,

> was in its death throes. It had a scant amount of weeks to live. We had no

> money to buy a new one, not a dime to spare. Barring a windfall or a

> miracle, it appeared I would be cut off from this wonderful list

> indefinitely. Well, I don't know about miracles, but members of this list

> (and I still to this day don't know how many or even the names of everyone)

> made something miraculous happen. I am writing to you now from a nearly-new

> computer donated by Kerri's office and sent to me by the grace of donations

> from all over. It arrived ONE WEEK before my old computer died for good.

> If that's not love and caring and fellowship, I don't know what is. (Thank

> you all, again, SO MUCH) Members send other members baby gifts, books,

> supplements, you name it. The sharing and caring on this list go above and

> beyond on a regular basis. And every new member who joins finds themselves

> accepted into this family of friends with no judgements, just open arms.

> You all make me cry. (Like I'm doing right now)

>

>

>

> Things being in this group has taught me:

>

> LAUGH. As long as you can still laugh, you can still live.

>

> CRY. You need to cry in order to laugh again.

>

> FALL. There is always someone there to catch you.

>

> SCREAM. No one will ever take it personally.

>

> VENT. No one will ever tell you you're wrong.

>

> LISTEN. The greatest gift you have to give is to listen to someone else

> when they need you.

>

> SPEAK UP. You'll never know how NOT alone you are if you don't tell anyone

> how alone you feel.

>

> BE HONEST. The worst thing you've ever done? Somebody else around here has

> done it too.

>

> LOVE. And loves comes back to you tenfold.

>

>

> I can't tell you all how special you are to me, you wonderful parents of

> autism.

>

> Jacquie

>

>

>

>

>

>

>

[Guest guest]

<sniff> <wipe tears>

{{{{{JACQUIE}}}}}

-Sara.

[Guest guest]

Jacquie, that sums it all up. I felt lost before I found this list.

And when I was all depressed over the weekend and I heard the

song " Friends in low Places " on the radio I got thinking I don't even

have that. But then I realized I have everyone on this list. This

is the first place I go when I'm proud of Mark, or when I'm mad at

him or when I have other problems in my life. I thank all of you for

being there for me!!!

Tina W.

[Guest guest]

Jacquie,

Your description of this site is perfect. Also, I can guarantee that you do

give back to us too. Thank you!

Seu

(your newest list memeber who's tired of correcting this stupid typo!)

[Guest guest]

how do you respond to words as profound as yours jacquie? i would be foolish to

try. i'll just say " thank you "

michelle

LONG but please read -- Re: Wow - a Group

Milestone

> I just realized we reached 100,000 posts on Nov 1!!! Wow!! I guess

> this group is a proven success! Thanks Jacquie!

>

> Kerri

>

Hey, I rock! (still laughing over my faux pas on that post with ...)

Seriously, though...

The other day I was thinking about how it's been 3 years and 2 months since

I started the group. I was remembering how afraid and lost and alone I felt

when I did it, and how dismal everything looked from where I was standing.

was JUST diagnosed; Marc was JUST off the boats; we were living in my

ILs' basement; I was going through intense rapid cycling that was to be

diagnosed a month later.

I needed support and comfort and understanding and a sense of belonging, and

no matter where I looked I couldn't find it. Marc was going through his own

crap; my ILs were USELESS and in denial; the parent groups were filled with

NTs. The autism support group int he area was three mothers with preteens

who'd known each for years. The online 'support' groups only made me feel

like a failure -- all the parents on them seemed so together and more

interested in advocacy and knowledge than just getting through the day.

I was DESPERATE. So I did this thing, hoping someone, ANYONE, would be out

there feeling the same way and find me. Do you know how long it took to

come up with the same 'Parenting Autism'? DAYS. I wanted a name that

excluded advocacy from the get-go. 'Mothering Autism' was a forerunner for

a bit, but that didn't seem fair.

All I wanted was a group where parents of autistic kids could get together

and talk about parenting the way NT parents got to.

So well you all know the story of the next 3 years...the little mailing list

that grew. :-)

Over these last three years, I have gotten everything I wished for from this

list, and maybe even given a bit back, too.

Support -- this is the first place I go when I need advice or opinions on

ANYTHING, from how to handle a new behaviour to what the hell colour to

paint my walls. I know there is always someone with a new idea, a novel

suggestion, or the relief to be able say, " oh my gosh, me too! " When I need

courage, I go here. When I need strength, I get it from all of you. When

I need wisdom, you all are the first place I look.

Comfort -- I don't think I've gotten as many real life hugs in my whole my

life as I've gotten in cyberspace from all of you. And contrary to what

anyone else may think, they are just as warm and comforting and reassuring

as the flesh-and-blood thing -- with out the awkward business of trying to

stop hugging first. :-) There is comfort in knowing that I can say

anything to this list and never be judged for my negative feelings, my

anger, my hurt, and my rage. And there is comfort in hearing those from

others, too -- the comfort of knowing I'm not as alone, NEVER as alone, as I

once thought. And no two words are as precious as the ones I read so often

here: " I know. "

Understanding -- " I understand " are two more wonderful words. Can anyone in

the NT world really understand what it's like to hate autism and love your

autistic child? To hate the life you're living but to be unwilling to trade

it for any other? Does anyone out there really understand what it's like to

truly love unconditionally and the toll it takes on you? No. But WE DO.

And that is more than I'd ever hoped to find.

and Fellowship. The bonds I've seen form on this list are truly

awe-inspiring. I feel like we are a team, spread across the world with one

mission -- to be PARENTS supporting other parents. Those of you who've not

been on the list for more than 6 months don't know what these amazing

parents did for me last April. My computer, which I'd had since college,

was in its death throes. It had a scant amount of weeks to live. We had no

money to buy a new one, not a dime to spare. Barring a windfall or a

miracle, it appeared I would be cut off from this wonderful list

indefinitely. Well, I don't know about miracles, but members of this list

(and I still to this day don't know how many or even the names of everyone)

made something miraculous happen. I am writing to you now from a nearly-new

computer donated by Kerri's office and sent to me by the grace of donations

from all over. It arrived ONE WEEK before my old computer died for good.

If that's not love and caring and fellowship, I don't know what is. (Thank

you all, again, SO MUCH) Members send other members baby gifts, books,

supplements, you name it. The sharing and caring on this list go above and

beyond on a regular basis. And every new member who joins finds themselves

accepted into this family of friends with no judgements, just open arms.

You all make me cry. (Like I'm doing right now)

Things being in this group has taught me:

LAUGH. As long as you can still laugh, you can still live.

CRY. You need to cry in order to laugh again.

FALL. There is always someone there to catch you.

SCREAM. No one will ever take it personally.

VENT. No one will ever tell you you're wrong.

LISTEN. The greatest gift you have to give is to listen to someone else

when they need you.

SPEAK UP. You'll never know how NOT alone you are if you don't tell anyone

how alone you feel.

BE HONEST. The worst thing you've ever done? Somebody else around here has

done it too.

LOVE. And loves comes back to you tenfold.

I can't tell you all how special you are to me, you wonderful parents of

autism.

Jacquie

[Guest guest]

ok, so I'm horribly behind. It's hard to believe that three years has passed.

This group is the best.

Janae

, 10, ADD

Jake, 6, autism