Re: messy personal stuff/MODERATOR PLEASE READ.

December 9, 2008

hi I too have just been lurking and reading the posts but unlike you I

love the personal updates I think as a community we need to support each

other

and sometimes that means support in other areas of our lives for only we

know the impact of having a child with ds and autism and how it affects every

area of our lives I also know that if I ever need help with something to do

Ds or autism this is where I will come I think this group is wonderful and

I hope it never changes Debby mom to Ethan 22

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December 9, 2008

I am the parent of a dually diagnosed 8 year old, too. I've posted questions

before and had kind responses. Almost always the issue someone discusses

relates to their child's issues; but everyone's issues differ based on the

extent they are affected by DS, by ASD, their age, and the people and

environment/education around them. So lots of questions will not apply to you;

just delete those if you have nothing to add. Some posts may offend you for one

reason or another; delete those too. Several posts will have discussion that

interest you; participate in those. And sometimes you'll have questions or

concerns of your own; post those, and wait for the loving and well intended

responses you will get as members generously take time out from their own

concerns to help you with yours. I don't participate a bunch on here but I do

when I can make the time and see info I can participate in, and I'm always

grateful to have this group to post a puzzling question to.

Beth

Quoting lilbaby1992 :

> Ok,

>

> I have been a lurker for awhile, reading and ignoring most of what is

> posted. In MY opinion, there is more " social " information being

> passed here than " meat " information. I can understand that some of

> you have been on this group for 10 years or so and you have developed

> personal relationships with others. I applaud that. HOWEVER, as a

> new member I am looking for support, and information, not personal

> updates. I am sorry that some posters have been going through

> rough " personal " times and I pray everyday that my plate does not get

> any fuller with " personal " issues. I just feel that personal updates

> should be just that, personal. I apologize if I offend anyone for

> saying this but if this is suppose to be a support group for parents

> that have a dual diagnosis of DS and ASD shouldn't that be the only

> information that we share? Things that are relavant to our issues,

> like the discussions of what works in school, where are children are

> now, what attorney or DAN doctors are in our area? I am not an EXPERT

> at all I came here looking to find the parents that are the EXPERTS

> but instead (NO OFFENSE INTENDED) I find myself reading about

> personal updates and peoples political views.

>

> I as a parent of an 8 year old do NOT have the experience that some

> of you with children that are in their early teens/twenties have,

> give me a break, share with me how you made it work, don't make me

> hit the same stumbling blocks you did when your child was my child's

> age.

>

> I strive to make a difference in the life that makes it easier for

> the people coming behind me. Isn't that what this is supposed to be

> for?

>

Beth and Brad DeHoff

DeHoff Writing and Communications Services

or

fax

December 9, 2008

I am not the moderator but I did want to respond also. I hope you don't mind.

It might seem at times that we are just chit chatting about our personal lives

but I can't tell you how many times I have had something or someone go through a

situation where I think back to one of these updates and realize that " Leah is

the one I need to talk to " or " Charlene will know just what to do " or " Sara

always handles situations like this best. " Plus, we so often never get to allow

ourselves the little hurrahs that come (sometimes too few and too far inbetween)

with our kids. We hear all the negative, all the down parts of what they can't

do. We also many times feel that we are at fault, that we are not handling

things well, and that if we were better parents, etc......What I find through

the sharing of this board is that we all face the same challenges, and we do

learn from each others experiences, and we do find that we are good parents, and

that it is the autism that is difficult, or that makes our life difficult.

Without the sharing of our lives day to day we would not build the connection or

trust for those big moments when we are hanging by a thread. This is the first

place I post when I need an answer and this is the place I get most of my

informed data. Somedays though, I just need to chat with the people who

understand me best.....other days, I want to dig deep into the world of Autism

and DS. When I want those days I either search our archives, or ask some

questions to get some chit chat going about what I am interested in knowing. It

only take a question to get the minds of this group going.

We have also grown so much this past year that I do think we are going through

some growing pains also. Just my opinion. Maybe at some point we need to look

at a type of system where we can post by topic or something. I personally find

those harder because I am one who wants to see everything because I never know

what might come up useful later on. But I know on other groups I belong to, we

can post by topic and then it helps to eliminate junk mail for those who do not

want all the other stuff.

I would encourage everyone who is lurking though to post some questions. There

are not too many topics we have not touched upon at one time or another. With

the holiday season, stress shows it's ugly face, our kids get off schedule,

chaos starts, and then the worst for me....Jake gets a hold of some

gluten.......then all heck breaks out.

Love the holidays.

Holly

December 9, 2008

I am a fellow lurker who reads more than posts. I have a ten year

old daughter with dual diagnosis also however I love this group. Yes

there is alot of personal issues but isn't that the point of a

support group....cry when you cry laugh when you laugh. We all have

days where we might be allowed by God's grace to let us seem like a

(sorry) normal family and days where everything revolves around our

children's issues. I belonged to another internet group for DS and

found it very clique oriented.....I actually left a post and nobody

responded because they were all friends and they didn't want to get

to know me or include me. How hurtful is it to be ostrisized by the

people you should have the most in common. I think sometimes we are

searching for anything but nothing gives us the peace we crave at

times. Start becoming active in the groups chatter and I think you

will soon become a well informed person you just complained about. I

live in a rural area and nobody I know has a daughter with a dual

diagnosis.....in other words I don't fit with other parents with Ds

kids either. I get info here and there from this group and ask if I

need help . I do agree however I read some post and wonder if I

stepped into someones personal email(perhaps they should try to email

in private) it is confusing sometimes on what subject actually is.

However I remember an incident not to long ago that made my heart

jerk and reminds me that sometimes it is a very lonely place and

feels like we have no one who understands....and to get comfort from

others in the same place is .....Priceless.

Live and let live.

>

> Ok,

>

> I have been a lurker for awhile, reading and ignoring most of what

is

> posted. In MY opinion, there is more " social " information being

> passed here than " meat " information. I can understand that some of

> you have been on this group for 10 years or so and you have

developed

> personal relationships with others. I applaud that. HOWEVER, as a

> new member I am looking for support, and information, not personal

> updates. I am sorry that some posters have been going through

> rough " personal " times and I pray everyday that my plate does not

get

> any fuller with " personal " issues. I just feel that personal

updates

> should be just that, personal. I apologize if I offend anyone for

> saying this but if this is suppose to be a support group for

parents

> that have a dual diagnosis of DS and ASD shouldn't that be the only

> information that we share? Things that are relavant to our issues,

> like the discussions of what works in school, where are children

are

> now, what attorney or DAN doctors are in our area? I am not an

EXPERT

> at all I came here looking to find the parents that are the EXPERTS

> but instead (NO OFFENSE INTENDED) I find myself reading about

> personal updates and peoples political views.

>

> I as a parent of an 8 year old do NOT have the experience that some

> of you with children that are in their early teens/twenties have,

> give me a break, share with me how you made it work, don't make me

> hit the same stumbling blocks you did when your child was my

child's

> age.

>

> I strive to make a difference in the life that makes it easier for

> the people coming behind me. Isn't that what this is supposed to

be

> for?

>

December 9, 2008

Hi,

I may be one of those people that you are referring to. I apologize if I have

offended you in any way. I have been on this list for approximately eight years

and after awhile you do get to know many of the people very well. The list may

seem to be a bit personal at times but it is the day to day chit chat that

sometimes helps pull you through many of those stressful days. Please email any

questions and concerns so that we may be allowed to respond. My son does not

have autism but I have found this list to be very supportive. I joined this list

during the time that my son was having extreme behavioral issues. The

information and support that I received was truly valuable. In my darkest days I

had parents that I could communicate with that understood and offered advice to

assist in finding workable solutions.

Charlyne

Subject: messy personal stuff/MODERATOR PLEASE READ.

To:

Date: Tuesday, December 9, 2008, 12:09 PM

Ok,

I have been a lurker for awhile, reading and ignoring most of what is

posted. In MY opinion, there is more " social " information being

passed here than " meat " information. I can understand that some of

you have been on this group for 10 years or so and you have developed

personal relationships with others. I applaud that. HOWEVER, as a

new member I am looking for support, and information, not personal

updates. I am sorry that some posters have been going through

rough " personal " times and I pray everyday that my plate does not get

any fuller with " personal " issues. I just feel that personal updates

should be just that, personal. I apologize if I offend anyone for

saying this but if this is suppose to be a support group for parents

that have a dual diagnosis of DS and ASD shouldn't that be the only

information that we share? Things that are relavant to our issues,

like the discussions of what works in school, where are children are

now, what attorney or DAN doctors are in our area? I am not an EXPERT

at all I came here looking to find the parents that are the EXPERTS

but instead (NO OFFENSE INTENDED) I find myself reading about

personal updates and peoples political views.

I as a parent of an 8 year old do NOT have the experience that some

of you with children that are in their early teens/twenties have,

give me a break, share with me how you made it work, don't make me

hit the same stumbling blocks you did when your child was my child's

age.

I strive to make a difference in the life that makes it easier for

the people coming behind me. Isn't that what this is supposed to be

for?

December 9, 2008

I too am very guilty of expressing many personal issues here. I lost my mother,

father and brother all in the last 5 yrs. Those were the people I had to talk to

when I was stressing over Mic and most everything that happens to me effects

Mic.Ive been here for 6 years and we were a small group of people looking for

answers for our families and the day to day issues we all have.I do not know

what would have happened to me without the support of my true cyber friends

here.I try very hard not to express my political or religious views here.I just

know when the chips are down and theres nobody left to talk to I can come here,

this group has been a God Send to me.I have learned more here then any book,

workshop or Drs visits I could ever have.If you have specific questions please

post them and Im sure you will get an overwhelming amount of answers and concern

from our members. I feel like we are family, we all are in a position most

people do not understand.I consider myself extremely lucky to have all of you.

Laurie

To: @...: nori.jackson@...: Tue, 9 Dec 2008

17:09:37 +0000Subject: messy personal stuff/MODERATOR PLEASE READ.

Ok,I have been a lurker for awhile, reading and ignoring most of what is posted.

In MY opinion, there is more " social " information being passed here than " meat "

information. I can understand that some of you have been on this group for 10

years or so and you have developed personal relationships with others. I applaud

that. HOWEVER, as a new member I am looking for support, and information, not

personal updates. I am sorry that some posters have been going through rough

" personal " times and I pray everyday that my plate does not get any fuller with

" personal " issues. I just feel that personal updates should be just that,

personal. I apologize if I offend anyone for saying this but if this is suppose

to be a support group for parents that have a dual diagnosis of DS and ASD

shouldn't that be the only information that we share? Things that are relavant

to our issues, like the discussions of what works in school, where are children

are now, what attorney or DAN doctors are in our area? I am not an EXPERT at all

I came here looking to find the parents that are the EXPERTS but instead (NO

OFFENSE INTENDED) I find myself reading about personal updates and peoples

political views.I as a parent of an 8 year old do NOT have the experience that

some of you with children that are in their early teens/twenties have, give me a

break, share with me how you made it work, don't make me hit the same stumbling

blocks you did when your child was my child's age.I strive to make a difference

in the life that makes it easier for the people coming behind me. Isn't that

what this is supposed to be for?

_________________________________________________________________

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8

December 9, 2008

Hi there,

I too was a lurker here who has graduated to semi lurker status.

That being said, I understand where you are coming from.

Along the way I also wanted to find the " meat " or at the least some

actual tidbits of real life info that I could use. So I tried

several groups, none of which provided me with the gist of what I was

looking for. Until I stumbled upon this group.

This group is the one that has given me the most info or validation

or sense of commonalities than all the others combined.

Some things I have learned over the past 3 or 4 years here and on

other " groups " had NOTHING to do with my particular circumstances at

the time but either enraged or impassioned me to act on behalf of

others who WERE being (adversely) impacted.

I have also gained much from the personal stories shared, beit

through the realization that globally- despite what age or what

circumstances or what disability-there is much work to be done and

much change needs to be made. That I am not alone in my fears or

anger or feelings of sadness, joy, distrust, weariness, pride.

Everyone has a unique story that when shared provides a guiding light

to others that come before them, after them & beside them. A couple

of sentences shared, about dangling a Woody doll or rewinding a movie

or song or teaching butt wiping, sheds light or brings needed

laughter or sometimes even peace.

Sometimes, unbeknowst to others, something personal that has been

shared, gives another the strength to battle on or the reassurance

that they are NOT alone or crazy....

I have found in my lurker status, much that has empowered me to

advocate for my child and for other's children. I have found in the

stories of the teenagers & the adults much that I either strive to

plan for or work on in the now as a preventative measure.

And it is all treasure. Initially, it may not seem so, until the

moment comes when perhaps you experience something that was posted

here...

As one lurker to another I offer you my group experiences in

encouragement- to stay the course, to ask or to muse aloud so that

you may be able to find what you seek. It may take awhile, but I

promise the day will come when you see many if not all of your

questions answered here..even the questions you have not asked yet or

know how to put into words.

Unexpected joys to you,

Kris

>

> Ok,

>

> I have been a lurker for awhile, reading and ignoring most of what

is

> posted. In MY opinion, there is more " social " information being

> passed here than " meat " information. I can understand that some of

> you have been on this group for 10 years or so and you have

developed

> personal relationships with others. I applaud that. HOWEVER, as a

> new member I am looking for support, and information, not personal

> updates......

December 10, 2008

charlyne is also very good when it comes to legal stuff and the school!! hugs!

shawna

Wishing all a very Merry Chirstmas!

http://sewshawna.blogspot.com

________________________________

To:

Sent: Tuesday, December 9, 2008 2:20:18 PM

Subject: Re: messy personal stuff/MODERATOR PLEASE READ.