Chat about Roundtable Meeting

[charliegirl]

[lookingforhelp] 9:40 pm: So, was everyone happy with the meeting? It must have been
wonderful to meet one another. Did you get out of it what you were hoping?

[Charlie Girl] 9:42 pm: We all loved the meeting Maria. I certainly feel I got more out of it
than I expected.

[lookingforhelp] 9:45 pm: I am glad that you enjoyed the meeting and got a lot out of it.

[lookingforhelp] 9:46 pm: DId all the travel work out well too? I know a few were concerned
with the distance and flights, etc. How was the hotel?


[Katiekat] 9:46 pm: Hotel was fantastic


[Katiekat] 9:47 pm: travel was great too

[tigger] 9:47 pm: maria the flights and everything went well i ended up being sick at the
meeting because of the flight

[tigger] 9:47 pm: i was only sick for the first half at the meeting

[lostmyshoe] 9:47 pm: Sorry to hear you got sick Tig

[lookingforhelp] 9:47 pm: Oh, I am sorry to hear that.

[lookingforhelp] 9:47 pm: Was the flight bumpy?

[tigger] 9:48 pm: the flight from newark to Salt Lake was because he was flying faster to make everyones next plane

[lookingforhelp] 9:48 pm: Anyone have a special event or moment that you want to share while we are waiting?

Katiekat] 9:48 pm: just meeting everyone was wonderful

[tigger] 9:49 pm: i agree with KK

[lookingforhelp] 9:50 pm: That's great. It must have been like a treasure hunt and you all
got a treasure. (Since you did not know what each other looked like, but finally found one another

[lostmyshoe] 9:50 pm: That must have been cool to meet in person

[Katiekat] 9:50 pm: we only had a pic of Uni

[Charlie Girl] 9:50 pm: It was

[Charlie Girl] 9:51 pm: Tracy was good about letting us know who was here when I got here and she got me their room numbers.

[Charlie Girl] 9:51 pm: They were exploring but I had them if they had been in

[lookingforhelp] 9:51 pm: Glad to hear she was so helpful. DId she speak about her children who also have ADHD?

[Katiekat] 9:51 pm: I wish I couldve stayed longer

[Charlie Girl] 9:52 pm: Not in the meeting.

[Charlie Girl] 9:52 pm: She talked to me about them on the phone.

[tigger] 9:52 pm: me too KK

[Charlie Girl] 9:52 pm: I wish we all had a day or 2 more.


[tigger] 9:52 pm: I do to CG

[lookingforhelp] 9:53 pm: I heard that many of you wished you had more time to speak. Were others talking too much (meaning the moderators or other companies?

[charliegirl]

[Charlie Girl] 9:54 pm: We really don't have much.

[tigger] 9:54 pm: besides me being sick i wished i could have talked more but we did have one person keeping interupting the person talking

[lookingforhelp] 9:55 pm: Was that anohter attendee or a person running things?

[lostmyshoe] 9:55 pm: How many people were there in all? alot?

[tigger] 9:55 pm: that was a person attending he was a friend of mine that made me so mad

[lookingforhelp] 9:55 pm: Oh, that stinks.

[Charlie Girl] 9:56 pm: We wish the meeting had been longer so we didn't feel rushed. We said a lot but I would have liked to ask more questions, and also some of the people didn't really have time to explain themselves at times.


[lostmyshoe] 9:56 pm: Was he the one talking too much?

[tigger] 9:56 pm: yes we didnt get thru everything because of it

[lookingforhelp] 9:56 pm: 13 people went right?

[Charlie Girl] 9:56 pm: I think so.

[Katiekat] 9:56 pm: we were running quite late

[lookingforhelp] 9:57 pm: Was it helpful to meet people from other forums? I know a few others went from other forums?

[Katiekat] 9:57 pm: I understand why you were mad tig

[lookingforhelp] 9:57 pm: Did they say they may do this again?

[tigger] 9:57 pm: thanks KK i wished i never invited him

[Katiekat] 9:57 pm: they did not mention if they would

[lookingforhelp] 9:58 pm: How about using members of the group as consultants? Anything like that?

[tigger] 9:58 pm: maria my friend that i am talking about that would not shut uop says he was told from one of the shire people that they are but i dont know

[tigger] 9:58 pm: they are having us go back???

[Katiekat] 9:58 pm: Do you mean in the future?

[tigger] 9:59 pm: That is what jimmie told me and jeannette but i dont know how true it is


[Katiekat] 9:59 pm: I didnt hear anything about that

[tigger] 9:59 pm: me either KK

[Charlie Girl] 9:59 pm: Tracy told me she hoped to do it again and have us back. She said
Shire was very pleased with the way it went.

[Katiekat] 9:59 pm: did you CG?

[Charlie Girl] 10:00 pm: I haven't heard any definite news about us going back.

[tigger] 10:00 pm: I hope so CG

[Charlie Girl] 10:00 pm: Tracy is hoping for it but she is with Phoenix and not Shire so I don't know how much weight her opinion would carry with that.

[tigger] 10:01 pm: I hope it is to somewhere different tho

[Charlie Girl] 10:01 pm: Why? I loved it there.

[tigger] 10:01 pm: I understand

[lookingforhelp] 10:01 pm: I think they were very happy wth the mtg and may in the future do something similar again. Or maybe ask some of you to review materials as they are developed. That was the point of the meeting...to develop useful materials for people who have newly diagnosed children (or themselves). We really want to put together information that is HELPFUL. You all would be the best to tell us if that it is helpful or not.

[tigger] 10:01 pm: I did too but that is a long flight for me

[Charlie Girl] 10:02 pm: I thought you meant the hotel Tig.

[tigger] 10:02 pm: Nope I loved the hotel

[Charlie Girl] 10:02 pm: They are based in NJ so its unlikely they will hold it somewhere else.

[tigger] 10:02 pm: But i would go back again

[Katiekat] 10:02 pm: the hotel was soo nice

[Charlie Girl] 10:02 pm: If they want to hold it in LA, I'll go. lol

[tigger] 10:02 pm: LOL me too barb

[lookingforhelp] 10:02 pm: I wish I had information about my daughter's condition that was more succinct. There is too much and too many links that i get overwhelmed. Do any of you feel that way?

[Katiekat] 10:03 pm: oh yes!

[Charlie Girl] 10:03 pm: I got a survey from them today. I raved about how great everything was. (The survey was from the hotel but I don't think I made that clear enough in the chat so I am doing so now)

[tigger] 10:03 pm: I do maria alot

[Charlie Girl] 10:03 pm: Yes, I do.

[tigger] 10:03 pm: I never got a survey!!!!!

[Katiekat] 10:03 pm: and the food...yum

[tigger] 10:03 pm: I do know one thing tho I can go by myself the next time and I wont be taking anyone with me

[lookingforhelp] 10:03 pm: Tigger, if you are further away, it may come later as it takes longer for mail to come to you than Charlie girl.

[lostmyshoe] 10:04 pm: still on, be back in a few

[tigger] 10:04 pm: Yes i loved the tomatoes and teh steak

[tigger] 10:04 pm: O so it came in the mail not email i got cha

[Charlie Girl] 10:04 pm: It was from some guy's name, Steven something. It may have gone into your spam. I almost didn't open it.


[lookingforhelp] 10:04 pm: Oh, I thought you meant snail mail, so scratch my comment.

[Charlie Girl] 10:04 pm: I got it in the e-mail

[tigger] 10:04 pm: yea i might have deleted it CG

[Katiekat] 10:05 pm: me too

[lookingforhelp] 10:05 pm: CG, how is this going to work out, are you going to give a summary of the meeting> just curious...

[tigger] 10:06 pm: I dont remember much because of how sick i got i had a hard time staying on topic because of it

[tigger] 10:06 pm: but i do remember some of it so if someone remembers it may click with me

[Charlie Girl] 10:06 pm: I can't. I think we should each just mention what touched us the most and hope the rest of us remember things to add to it.

[Charlie Girl] 10:07 pm: We started with the video

[JJ] 10:07 pm: I'm getting off here for just a second.

[Charlie Girl] 10:07 pm: and I am drawing a blank as to his name

[lookingforhelp] 10:07 pm: I hope you all felt that your comments mattered. That is so important to feel validated. I mentioned that to Dan, that everyone who wanted to say something should be validated.

[tigger] 10:08 pm: i rember the video he was talking about how adhd react i think but i dont rember his name either

[Charlie Girl] 10:08 pm: I certainly felt that they listened to what I had to say.

[tigger] 10:08 pm: i didnt give much i dont feel maria 1 because i was sick and 2 because jimmie would not shut up

[lookingforhelp] 10:08 pm: Did they show you any items that they were considering for the information that might be part of the materials?

[Katiekat] 10:08 pm: I think one thing that stands out in my mind is how everyone has the same difficulties, like someone would say something and everyone would be nodding their heads yes

[lookingforhelp] 10:09 pm: Talk about Validation KK! That is wonderful. There is nothing as helpful as knowing you are not alone.

[tigger] 10:09 pm: yes that is true KK that did stand out that is one thing i found i had a hard time because they would go around the room and by the time i got the chance to
speak everyone else had said it

[charliegirl]

[Charlie Girl] 10:09 pm: definitely KK. It made us very aware that even with different comorbids and the differences between inattentive and hyper, etc, we still had more in common

[tigger] 10:10 pm: and yes i did realize i was not alone

[Katiekat] 10:10 pm: we gave info and input for a website in our group

[tigger] 10:10 pm: in my group we did a brochure

[Unicorn] 10:11 pm: i did the brochure too

[tigger] 10:11 pm: actually i think i am the only one here that was in that group

[lookingforhelp] 10:11 pm: that's good. I did not know that they would set you up into groups. Did you like that?

[Charlie Girl] 10:11 pm: I have Jennifer's e-mail address if anyone thinks of anything to add to what we already did as far as the website.

[tigger] 10:11 pm: ok good i am not

[Unicorn] 10:11 pm: if we had more time

[tigger] 10:11 pm: i did like that maria

[tigger] 10:11 pm: but again if we had more time

[Charlie Girl] 10:11 pm: I'm working on making the site more visible in searches and then I'll send her what I think will work.

[Katiekat] 10:12 pm: I liked that also

[lostmyshoe] 10:12 pm: Were there any adults with ADD there?


[Charlie Girl] 10:12 pm: LOL! Yes!

[Unicorn] 10:12 pm: we'd talked about that we would have liked it to be longer in general

[tigger] 10:12 pm: yes my friend jimmie was there he has adhd

[Charlie Girl] 10:12 pm: Several of us

[lookingforhelp] 10:12 pm: Did anyone share your forum information with the other people

(attendees) such as from Web MD or adhdnews? Maybe it would help them to know you via your forum too

[Charlie Girl] 10:12 pm: No

[Charlie Girl] 10:13 pm: They asked us what we thought of CHADD and ADDA and that was all that was mentioned as far as other sites.

[Charlie Girl] 10:13 pm: I think they all knew or we told them about our site though.

[lostmyshoe] 10:13 pm: I went to a CHADD meeting before but it was so far away. None close to me

[lookingforhelp] 10:13 pm: When I was doing my initial research to locate willing participants I learned that a lot of online users go to several sites/forums. I would think it would be hard to keep up with them all though.

[tigger] 10:13 pm: we talked about how teahcers and nurses need to be better informed about adhd

[Katiekat] 10:14 pm: yes school is a problem ALOT of us have

[Charlie Girl] 10:14 pm: Actually, I knew most of them from the sites. Some only by their usernames but it was nice having an idea.

[lookingforhelp] 10:14 pm: Was there a dr there too?

[Charlie Girl] 10:14 pm: Definitely Tig.

[tigger] 10:14 pm: YES!!

[Unicorn] 10:14 pm: it isn't that hard to keep track as long as you can spend a few minutes each day on each site, even if you don't post everyday on each site.

[Charlie Girl] 10:15 pm: Yes, she was wonderful. A pediatric neurologist

[Unicorn] 10:15 pm: she was good

[Katiekat] 10:15 pm: this is the only site I go to

[tigger] 10:15 pm: I just spend time on are site i have had problems with others that i just dont wanna go back

[lookingforhelp] 10:15 pm: I hope she was helpful

[Unicorn] 10:15 pm: she was

[tigger] 10:15 pm: She was helpful she did spend some time at least i know with me and talking and giving some advice with my son

[Katiekat] 10:15 pm: yes, i wish she was around here

[Charlie Girl] 10:16 pm: I would have loved to sit and chat with her for hours. She answered so many questions we had and some I didn't know I had.

[lookingforhelp] 10:16 pm: It must have been nice if you were able to ask her personal questions. Many times though, drs will say "If you r child is not my patient I cannot answer your questions."

[Katiekat] 10:16 pm: I wouldve liked to been able to talk with her

[Charlie Girl] 10:16 pm: She wasn't like that at all.

[Unicorn] 10:16 pm: me too katie

[lookingforhelp] 10:16 pm: That's great. What was her name? Anyone remeber?

[Charlie Girl] 10:17 pm: I didn't talk to her individually but she had no problem answering in the meeting

[Charlie Girl] 10:17 pm: Donna

[Charlie Girl] 10:17 pm: ?

[tigger] 10:17 pm: Yes i think you were right CG

[lookingforhelp] 10:17 pm: Did she mention having her own site or newsletter? Sometimes they do and you may be able to get it free.

[Charlie Girl] 10:17 pm: Donna Lynn Antonucci

[Katiekat] 10:18 pm: not that I recall

[tigger] 10:18 pm: I dont think so but i would love to just sit and talked with her longer she was very knowledgeable

[lookingforhelp] 10:18 pm: Was there a gernal consensus among the group as far as what type of information is the most NEEDED?

[Charlie Girl] 10:18 pm: I just checked my folder

[Unicorn] 10:18 pm: she didn't mention a site

[tigger] 10:18 pm: LOL CG i am to lazy to go back and get mine

[Unicorn] 10:18 pm: lol CG I was getting my folder

[Charlie Girl] 10:19 pm: I think we agreed that the nurses and educational workers needed educating.

[lookingforhelp] 10:19 pm: You could always try to google her name in quotes or add the term ADD or ADHD after her name and see if she has any papers or sites.

[tigger] 10:19 pm: You know i am not sure really what would be needed i think the best thing to say for me at least is patience alot of patience

[lookingforhelp] 10:19 pm: Well, that is great. It give them a place to start...more educational information for the teachers and nurses.

[Unicorn] 10:19 pm: she seemed to do lots of talks and travel a lot
[Charlie Girl] 10:20 pm: Russel Barclay was the speaker on the video

[Charlie Girl] 10:20 pm: the dr talked about the Biederman study but I don't remember much about it.

[Unicorn] 10:20 pm: he was good too

[lostmyshoe] 10:20 pm: What did you think of the video?

[lostmyshoe] 10:20 pm: I've heard he has some really great books.

[tigger] 10:20 pm: alot of info

[Unicorn] 10:20 pm: it was interesting

[lookingforhelp] 10:20 pm: One of my daughter's therapists is a speaker at many conferences. Those are the good ones.

[Unicorn] 10:20 pm: wished we had some of the charts to see as he talked

[lookingforhelp] 10:21 pm: Do you want me to see if I can get them for you?

[tigger] 10:21 pm: Yes that would had helped

[Charlie Girl] 10:21 pm: They edited them out, thought they would bore us so there were no graphs

[Charlie Girl] 10:21 pm: yes.

[lookingforhelp] 10:22 pm: I will ask Dan.

[tigger] 10:22 pm: now dan was at the meeting right if i have him right he was sitting next to tracy

[Unicorn] 10:22 pm: i think so

[Charlie Girl] 10:22 pm: Dr Barclay said that studies have proven that not only does grade retention not help, it is harmful

[Charlie Girl] 10:23 pm: yes Tig

[lookingforhelp] 10:23 pm: Did this meeting cause anyone to feel that they might change their chld's med status (whether to put them on or take them off? I am not sure if they even talked meds, did they?

[tigger] 10:23 pm: ok

[Charlie Girl] 10:23 pm: He also said 80% of people don't outgrow ADHD and of those who do, they still have permanent ill effects from having it.

[tigger] 10:24 pm: Yes they did talk about meds and it didnt not change my mind

[Katiekat] 10:24 pm: well the med they talked about most was a stim..which my son cannot take because of a heart condition

[Unicorn] 10:24 pm: i am going to talk to my doctor about maybe changing, but like they say if it isn't broke don't fix it.

[lostmyshoe] 10:24 pm: I can speak from personal experience that it doesn't go away but you can learn to work around it

[charliegirl]

[Katiekat] 10:25 pm: some of those statistics they gave were scary

[Charlie Girl] 10:25 pm: They talked a lot about Vyvanse and its comparison to Adderall

[Unicorn] 10:25 pm: they were

[tigger] 10:25 pm: i dont think my pysch will even consider to try the meds

[Katiekat] 10:25 pm: about drugs and sex and all that good stuff

[Unicorn] 10:25 pm: like all the impulsive things that teens can get into

[tigger] 10:26 pm: yes KK i agreed that was scary

[Katiekat] 10:26 pm: Tig-are ur kids on meds?

[Katiekat] 10:26 pm: I forget

[Charlie Girl] 10:26 pm: I don't think they changed anyone's view on meds but then, I don't think any of us were totally on one side of the issue or the other either

[Katiekat] 10:26 pm: I agree, it wasnt like a meds debate

[tigger] 10:27 pm: Yes KK both of my kids are on meds and i was not on either side i came with an open mind hoping to learn something

[Katiekat] 10:27 pm: mine isnt but I wish he were LOL

[Charlie Girl] 10:27 pm: We have posted those stats before though so it wasn't a total surprise to anyone as far as I know.

[lookingforhelp] 10:27 pm: I was wondering if they had a lot of conversation about meds. I was hoping it would be an open forum for all of you and it sounds like it was. Dan tried to
keep it that way.

[Unicorn] 10:27 pm: mine is and like Tigg went open minded

[tigger] 10:28 pm: I met to try the new meds jeannette mentioned it to him(we see the same psych) and he didnt seem to happy he thought we were there to to give him a sale
pitch

[Charlie Girl] 10:28 pm: If they had offered to do an echocardiogram on my kid, he would be on meds right now. LOL

[Charlie Girl] 10:31 pm: Did they give you any details about the meetings Maria? I can send you the agenda and the copy of the things they wanted to cover on the web site dev.

[lookingforhelp] 10:31 pm: Did you eat with the group?

[lookingforhelp] 10:32 pm: No. I have nothing except the list of who went and only got it a few days ago. I was really disappointed that I could not come.

[tigger] 10:32 pm: Yes maria we got to eat with the group

[Unicorn] 10:32 pm: we ate most of our meals in the same room, sitting at different tables each time to talk to a lot of people there.

[bugsmom] 10:32 pm: I'm so glad your posting this because I missed half of it due to my stupid computer!

[Charlie Girl] 10:32 pm: They had a buffet set up and it was
delicious!

[lookingforhelp] 10:32 pm: that sounds nice

[Katiekat] 10:33 pm: it sure was

[Charlie Girl] 10:33 pm: Prime rib!

[Unicorn] 10:33 pm: the food was good!!!

[lookingforhelp] 10:33 pm: Did you take time to chat about yourselves or was it all business

[Katiekat] 10:33 pm: chocolate mousse in chocolate tulip shells

[Unicorn] 10:33 pm: out of the meetings we did

[tigger] 10:33 pm: I agreed the food was really good

[Charlie Girl] 10:33 pm: The only time I talked business was in the meeting. lol

[Unicorn] 10:33 pm: oh yeah the mousse

[Katiekat] 10:33 pm: we had time to chat with each other

[tigger] 10:33 pm: i didnt care for the choaloacte moose but the fruit i did

[Unicorn] 10:34 pm: we went shopping and touring NYC together

[lookingforhelp] 10:34 pm: I was wondering do your children (if they are old enough) have a place like this to go get comfort and help? I was thinking this type of forum would be a good thing for my daughter when she is older.

[Katiekat] 10:34 pm: does your daughter have ADHD Maria

[lostmyshoe] 10:34 pm: I was thinking that myself looking because my daughter has had such a rough year this year

[tigger] 10:34 pm: My daughter or son dont get on the puter much i montor them really closely

[Unicorn] 10:35 pm: maria I would hope that there would be someplace that the children
can go to
[Katiekat] 10:35 pm: I dont know of anything like this for kids mine is still too young

[Charlie Girl] 10:35 pm: Schwablearning has a site for kids that is well monitored for LDs. Sparktop

[Unicorn] 10:35 pm: tiff doesn't use the computer much

[tigger] 10:36 pm: I dont know if mine can, they have a hard enough time with reading and understanding what they do read

[Katiekat] 10:36 pm: Sean cant read LOL
[
[lostmyshoe] 10:36 pm: I just worry about predators all the time on the computer and I don't let her chat with anyone but her friends and none of them have ADD that she can talk to about it

[lostmyshoe] 10:37 pm: She doesn't want her friends to know

[lookingforhelp] 10:37 pm: Sometimes I try to think about her future and wonder if she will be feeling that way too, so I thought a support group online might be nice.

[Charlie Girl] 10:37 pm: I understand that Losty

[Unicorn] 10:37 pm: even on the well monitored kids sites she does go on I worry that the people on the other end are not kids. so I don't let her chat on her sites

[tigger] 10:37 pm: cheeze my 2 have big mouths everyone knows they have ADHD

[Charlie Girl] 10:37 pm: I'm sure there are some out there Maria.

[lostmyshoe] 10:38 pm: Some kids don't care if the whole world knows but Becca is so private about it. I admit, I am too.

[The Lounge]: puzzled has entered at 10:38 pm

[lookingforhelp] 10:38 pm: Yes, I just need to look. I would love to find them and share them with that boy.

[lostmyshoe] 10:38 pm: My H's family has no idea about Becca and I

[bugsmom] 10:38 pm: Tig...mine did the same thing too...now he regrets it.

[tigger] 10:38 pm: I wont let my kids chat at all they rarely get on at all

[tigger] 10:39 pm: I dont know if mine will regret it

[puzzled] 10:39 pm: I probably missed tons..

[Unicorn] 10:39 pm: tiff has told a lot of her friends. a lot of them have ADD or ADHD or other LD's too, so they have their own little club so to speak. they will have lots of support when they need it. some of their parents have ADHD too

[lostmyshoe] 10:39 pm: At least I can understand how she feels and what she goes through because I have it too

[Unicorn] 10:39 pm: hi puzzled

[lookingforhelp] 10:39 pm: The drs say that cognitively Sarah is doing well, but she cannot do a lot of physical things yet, like sitting up, crawling, rolling, etc.

[Katiekat] 10:39 pm: thats great Uni

[tigger] 10:39 pm: Nicole has a best friend whom has ADHD so she and her do speak

[Charlie Girl] 10:40 pm: Same here but sometimes I feel that my son would be better off if I didn't understand. I know there are times when I don't push him hard enough and he could
do more.

[charliegirl]

Katiekat] 10:40 pm: plus she had an identical twin sister without CP and THAT is so hard for her

[bugsmom] 10:40 pm: Josh also has two buddies that have add...there is comfort in numbers.
[lostmyshoe] 10:40 pm: One of Beccas friends had ADHD but has a really big yap and would tell the whole school so Becca never told her

[puzzled] 10:40 pm: chase has friends at school that he knows are adhd, but none are close friends.

[lookingforhelp] 10:40 pm: Did anyone feel that the mtg will make a difference for others in the future with the materials that will be made? I am hoping to convince someone to do this for CP.

[lostmyshoe] 10:41 pm: I meant to say has

[puzzled] 10:41 pm: and they are the hyperactive ones....not inattentive

[Charlie Girl] 10:41 pm: Jonathan has friends who have it and he knows they take meds
but he doesn't realize they have the same thing.

[Unicorn] 10:41 pm: katie half of my Girl Scout troop have attention issues so I know how to make it work for everyone involed.

[tigger] 10:41 pm: I do maria i feel that we did help out alot

[lostmyshoe] 10:41 pm: Becca has only known ADHD not the inattentive, which is what her and I have

[Unicorn] 10:42 pm: i also felt that we helped, i just hope that what we did will show up and help people in the future

[Katiekat] 10:42 pm: It would be great to do something imilar for CP MAria I think people need more correct info on it

[lostmyshoe] 10:42 pm: I mean the friends she has with it, it's not the in attentive kind

[puzzled] 10:42 pm: knowledge is power in all things

[Charlie Girl] 10:42 pm: I'm sure the meeting will have a positive impact. Tracy is in charge of the pamphlet and since she has dealt with ADHD, I believe she will make sure that everything we said is weighed and dealt with as much as possible.

[Charlie Girl] 10:42 pm: Thats a great idea KK!

[puzzled] 10:43 pm: same with chase, and the hyperactive ones are always in trouble, so he does not hang out with them much

[tigger] 10:43 pm: i do to uni i

[Katiekat] 10:44 pm: with any disability people need to understand before they judge

[Charlie Girl] 10:44 pm: Shire's web site for ADHD is really nice so far and if they allow Jennifer to implement what we discussed, I'm sure it will be even better.

[Unicorn] 10:44 pm: well said katie

[tigger] 10:44 pm: i hope so i sure hope what we made over tthere we will be seeing soon in dr offices and on the web


[Charlie Girl] 10:45 pm: me too Tig!

[Katiekat] 10:45 pm: working with special ed. kids has taught me so much

[puzzled] 10:45 pm: yes drs offices need more comprehensive info

[Charlie Girl] 10:45 pm: I honestly don't think they went to that expense only to ignore us and what we had to say.

[Unicorn] 10:45 pm: that is true CG

[Katiekat] 10:45 pm: I agree

[puzzled] 10:45 pm: i wouldn't think so either cg

[Unicorn] 10:45 pm: I do think deep inside that they really wanted our perspective

[lookingforhelp] 10:45 pm: I will follow up on the materials. I think I will be asked to help work on them since I am a medical writer. I will let you know when things begin to happen.
Sometimes with pharma co's things take a little longer to actually begin since there is budgeting etc, but I think this team at Shire is really excited to move ahead and should hopefully do something sooner than later. As I said, I will try to keep you posted. You can always contact me directly at [e-mail]

[Unicorn] 10:46 pm: thanks maria

[lookingforhelp] 10:46 pm: or at [e-mail] please put ROUNDTABLE
ADHD in the subject so I do not spam you.

[Charlie Girl] 10:46 pm: Thanks Maria!


[tigger] 10:46 pm: thanks maria
[lostmyshoe] 10:47 pm: I'm glad everyone learned some things at the meeting. I hope I can go to one one of these days if they have another

[lookingforhelp] 10:47 pm: Yes, CG...they did go through a very large expense for this and are very serious to make this happen. They are very appreciative for your input and for
taking out the time to help them and your fellow parents

[puzzled] 10:47 pm: me too

[Charlie Girl] 10:47 pm: That would be great. I'd love for us all to be able to go to one.

[Katiekat] 10:47 pm: me too

[lookingforhelp] 10:48 pm: Who is Jennifer?

[puzzled] 10:48 pm: mine type slower and then I still have typos

[lostmyshoe] 10:49 pm: Not familiar with her

[Charlie Girl] 10:49 pm: She is involved in working on the website.

[lookingforhelp] 10:49 pm: Is she with Shire or tracy

[Charlie Girl] 10:49 pm: Shire

[tigger] 10:49 pm: i have to read what is said 3 or 4 times to understand what there is saying

[lookingforhelp] 10:49 pm: or Dan

[Katiekat] 10:50 pm: that was who we worked with when we split into groups

[Charlie Girl] 10:50 pm: I don't have contact info for him.

[lookingforhelp] 10:50 pm: CG Do you mean Dan?

[Charlie Girl] 10:50 pm: We had Dan, Jennifer and Dr A.

[tigger] 10:51 pm: we also had a pharmnacyu guy there to he was from shire to

[tigger] 10:51 pm: he sat right next to me

[Charlie Girl] 10:51 pm: I forgot about him. He didn't say much. lol

[lookingforhelp] 10:51 pm: Dan is the guy that I do work for...he is the one who asked me to find willing interested people to help us

[tigger] 10:51 pm: nope tracy told me that she wanted me right next to him case i had something to say and then he would help me out i dont know why

[bugsmom] 10:52 pm: How many people were involved?

[Charlie Girl] 10:52 pm: He seemed very nice.

[Unicorn] 10:52 pm: 13 guests I believe

[lookingforhelp] 10:52 pm: The list I have says 13 people particpiated from forums.

[tigger] 10:52 pm: he was

[Charlie Girl] 10:52 pm: I think she felt that you would feel shy and might need his encouragement. Tig

[Katiekat] 10:52 pm: like 20 maybe

[Katiekat] 10:52 pm: total

[tigger] 10:52 pm: you might be right

[Charlie Girl] 10:53 pm: yes, there were 13

[Unicorn] 10:53 pm: i think she is right

[Unicorn] 10:53 pm: 20 total, 13 of us

[tigger] 10:53 pm: i tried to sit next to jeannette or you CG but tracy would not let me

[bugsmom] 10:53 pm: Oh, I thought there were more...I'm so bummed I couldn't go!


[Charlie Girl] 10:53 pm: I really wish you could have gone.
[puzzled] 10:53 pm: we all were bummed!!! ah well, next time.....

[Unicorn] 10:53 pm: i think they sat us that way for a reason

[lookingforhelp] 10:54 pm: We had a larger list of people who wanted to go, but the dates did not work out. Maybe next time

[tigger] 10:54 pm: i hope there is a next time

[Unicorn] 10:54 pm: i had the teacher next to me

[Katiekat] 10:54 pm: I thought it would be a huge group of people...I was glad it wasn't

[Unicorn] 10:54 pm: i hope there is a next time too

[tigger] 10:54 pm: i just didnt like the microphones

[Katiekat] 10:54 pm: and me Uni

[bugsmom] 10:54 pm: That's what happened to me...bad date!

[puzzled] 10:54 pm: me three

[Charlie Girl] 10:55 pm: I agree. If there had been many more, it would have gotten too hard to express ourselves. As it was, sometimes it was a long wait before we could speak.

[tigger] 10:55 pm: Yes and by the time it got to me everyone had discussed what i wanted to really say

[lookingforhelp] 10:55 pm: i wonder if that is why they split you up into groups or was it to go over specific items?

[Katiekat] 10:55 pm: I pictured it being like a hundred people

[lookingforhelp] 10:55 pm: We wish

[bugsmom] 10:55 pm: I love that it was a smaller group...it makes much more sense.

[Charlie Girl] 10:56 pm: Those microphones were the pits. I had to either talk to the phone or look at people and I couldn't remember to look at that instead of the people.

[puzzled] 10:56 pm: at least for the first time

[tigger] 10:56 pm: yes it was nice and i am glad for all who came i think and feel we made a difference

[lookingforhelp] 10:56 pm: But as I said we are all so grateful for those who were there

[tigger] 10:56 pm: yes CG i hated those microphones but i did the best i could

[Katiekat] 10:57 pm: did not mind them

[tigger] 10:57 pm: i hope we all get to do this again

[Charlie Girl] 10:57 pm: Me too.

[Unicorn] 10:57 pm: i got used to the mics after a while, i am usually not one to speak in front of a group, but I was comfortable

[tigger] 10:57 pm: i was hoping that we could be on the dvds there making

[Katiekat] 10:57 pm: but I have a big mouth

[puzzled] 10:58 pm: me too, I woulda had no problem

[tigger] 10:58 pm: i have a big mouth if i get mad

[Unicorn] 10:58 pm: lol katie

[puzzled] 10:58 pm: can't shut me up

[lookingforhelp] 10:58 pm: Is there anything that we could do better next time, if there is a next time? I could let Dan know

[Charlie Girl] 10:58 pm: When we split into the smaller group, the same couple of people monopolized the entire thing. I finally gave up even trying and just wrote some things down and handed them to Jennifer.

[lookingforhelp] 10:58 pm: Gee that is sad

[puzzled] 10:58 pm: yes it is

[puzzled] 10:58 pm: maybe give everyone a limit

[tigger] 10:58 pm: i felt the same way CG i think we all should get a chance to speak

[Charlie Girl] 10:58 pm: give us 2 days of meetings so we can learn more and talk more.

[Unicorn] 10:58 pm: that was true CG

[puzzled] 10:58 pm: so no one can do that again

[Katiekat] 10:59 pm: definitely

[tigger] 10:59 pm: Yes 2 days would be much better

[Unicorn] 10:59 pm: much

[puzzled] 10:59 pm: give you time to digest what you heard the first day

[Unicorn] 10:59 pm: we still had so much more to say and no more time

[puzzled] 10:59 pm: and comment on it the second

[Katiekat] 10:59 pm: agreed

[Charlie Girl] 10:59 pm: I didn't mind once I realized there was no reason I couldn't write it down. I think a lot of what I had to say wasn't what they were looking for in that anyway. I'm not sure.

[tigger] 10:59 pm: yes i felt rushed really

[bugsmom] 11:00 pm: And a date planned far in advance so people can plan better...

[tigger] 11:00 pm: I did feel that way on certain things CG

[tigger] 11:00 pm: YES!!!!

[puzzled] 11:00 pm: yes so more can work iti in to their schedule

[lookingforhelp] 11:00 pm: CG Can you explain?

[Unicorn] 11:00 pm: true

[Charlie Girl] 11:01 pm: Hopefully if they do it again and invite us back, they won't have the scramble of trying to get enough people together and can have more time to give us to
plan. Hopefully!

[lookingforhelp] 11:01 pm: What did you feel they were not interested in

[Charlie Girl] 11:01 pm: explain what?

[lookingforhelp] 11:02 pm: You said this: I didn't mind once I realized there was no reason I couldn't write it down. I think a lot of what I had to say wasn't what they were looking for in that anyway. I'm not sure.

[Charlie Girl] 11:02 pm: Oh, I had some ideas for getting people on the site and building it up but it didn't seem to be what they were talking about in the group.

[lookingforhelp] 11:02 pm: Oh, but did you give that to Jennifer?

[lookingforhelp] 11:03 pm: I will tell Dan about these improvements

[Charlie Girl] 11:03 pm: It wasn't a big deal to me. I hadn't even thought of the possibility of a web site so my brain had to switch gears. Not easy for an ADHDer who has thought about a pamphlet for weeks. lol

[tigger] 11:03 pm: are we going to be working with them again or not everyone???

[Unicorn] 11:03 pm: i would like to work with them again

[lookingforhelp] 11:04 pm: So, it sounds like they should have given you more information about what they were looking for so you could prepare your thoughts in advance

[tigger] 11:04 pm: me too I want to be part of it all if i can

[Charlie Girl] 11:04 pm: Yes, I did write them down and give them to her. I also checked their site and they are not set up to attract search engines at all. I am working on what to tell her about that and will send it on to her.

[Katiekat] 11:04 pm: thats a good idea

[bugsmom] 11:04 pm: Super idea!

[tigger] 11:05 pm: yeppers
[Charlie Girl] 11:05 pm: That would have helped. I have to admit, I wasn't happy that they pulled it. Knowing I was a site Admin and 1/2 of the people there were there either
because they were from our site or one that I had asked the admin to let you look on. I felt betrayed.

[Charlie Girl] 11:06 pm: It took me a minute to think about the fact that they were targeting a much larger group than we do.

[Charlie Girl] 11:06 pm: If I had known to expect it, it wouldn't have floored me at first.

[tigger] 11:06 pm: iI agree CG

[puzzled] 11:06 pm: i missed something....what did they pull cg?

[tigger] 11:07 pm: I know alot will agree with me KK

[Charlie Girl] 11:07 pm: Asking us to help them build up their web site.

[Unicorn] 11:07 pm: when we have our site here

[puzzled] 11:07 pm: ahh.....

[puzzled] 11:07 pm: ok i get it

[Charlie Girl] 11:07 pm: I had no problem with that but it just felt like they had pulled a fast one by not mentioning that even once.

[tigger] 11:07 pm: i think maybe to know in advance that way you could be better prepared for them

[puzzled] 11:07 pm: they putting in a message board too?

[tigger] 11:08 pm: I think so puzzle i think you get to make your own blog too

[Unicorn] 11:08 pm: i don't know

[Charlie Girl] 11:08 pm: We have a specific target group and it seems to work well. We all fit so well together when we met. They are targeting anyone who needs info on ADHD and
they need to grow fast and big

[puzzled] 11:09 pm: that is so cool that you all got along well when you met in person too...

[lookingforhelp] 11:09 pm: I am so sorry that you felt that way. I had hoped that when I wrote in my original few requests for help that I made it clear that some of the information may be used in a booklet for drs offices or a website

[Charlie Girl] 11:09 pm: I think they should put in a message board.

[Katiekat] 11:09 pm: I have to say I am very very happy with this site and have no desire to go fishing aound for others, you guys are like...my friends

[puzzled] 11:09 pm: doesn't always happen

[Charlie Girl] 11:09 pm: They need to keep people coming back once they have read everything they want to read.

[tigger] 11:09 pm: I agree KK

[tigger] 11:09 pm: I feel right at home here

[Charlie Girl] 11:09 pm: Its ok Maria. I should have considered the possibility.

[Charlie Girl] 11:10 pm: They aren't competing with us at all.

[Charlie Girl] 11:10 pm: We all want to help everyone we can and that is why we do it. There really isn't room for egos anyway.

[lookingforhelp] 11:10 pm: The problem is that they need to get people the information. I guess they have no choice but to create a website to share it. I am glad it is not competing with you.

[lookingforhelp] 11:11 pm: Could you ask to have your forum linked to their site?

[Unicorn] 11:11 pm: i think CG did

[tigger] 11:11 pm: I was under the impression that she did too

[Charlie Girl] 11:11 pm: We have been very welcomed by other small sites who could have seen us as competing. The only ones which ever thought of us as competition were actually sites with over 10,000 members. lol

[puzzled] 11:12 pm: who could that be.......hmmmm.....LOL
[Unicorn] 11:12 pm: lol
[Unicorn] 11:12 pm: hmmmm who knows
[bugsmom] 11:12 pm: Hee Hee CG
[Charlie Girl] 11:12 pm: I did ask Jennifer if she would link with us if they linked with other sites. She said yes but then, what could she say at that point. lol

[lookingforhelp] 11:12 pm: I suggested handing out brochures from drs offices, making them available in public places, libraries, pharmacies, stores

[puzzled] 11:13 pm: and this site won't appeal to just everyone.....some ppl want a different kind of place

[Charlie Girl] 11:13 pm: XXX wasn't the only one believe it or not. lol

[puzzled] 11:13 pm: this one is small, and homey

[puzzled] 11:13 pm: some dont want that, they want huge and impersonal

[Katiekat] 11:13 pm: very

[tigger] 11:13 pm: i am right at home with are site

[Charlie Girl] 11:13 pm: I can't remember the other one right off the bat but they told me outright they won't link to other sites because they might lose members.

[lookingforhelp] 11:13 pm: This does feel so secure and caring to me. I felt comfortable to share my personal business about Sarah even though I do not know anyone

[puzzled] 11:14 pm: everyone here is genuine and kind

[Unicorn] 11:14 pm: it made me feel very welcome when i first came here

[tigger] 11:14 pm: i dont know everyone but the ones i did meet i feel like i have known them for years

[Unicorn] 11:14 pm: and still do

[bugsmom] 11:14 pm: We're like a cyber family!

[puzzled] 11:15 pm: yes everyone has made me very welcome too
[Charlie Girl] 11:15 pm: That is what we are aiming for Maria. Some people only want info but many of us need that feeling of family

[lookingforhelp] 11:16 pm: I thought chat rooms are for support and they have nothing to do with profits...so why would anyone feel bad if a member has more than one site they like to go on?

[lookingforhelp] 11:17 pm: Honestly, I was a bit intimidated when I first started looking for people...some people were mean and rude

[puzzled] 11:18 pm: we can imagine

[puzzled] 11:18 pm: yeah mine is a long story too tigg

[Unicorn] 11:18 pm: me too tigg

[Katiekat] 11:18 pm: no one here is mean or rude

[puzzled] 11:18 pm: they probably didn't believe you were for real
[Katiekat] 11:18 pm: ever

[lookingforhelp] 11:18 pm: I realized I had to find someone I could feel I could trust if I wanted them to trust me and what we were doing. You hear so many scary dangerous things about websites/forums, and now that we have kids...I have to be so careful! You all know what I mean.

[Unicorn] 11:18 pm: everyone here is genuine

[tigger] 11:19 pm: the ones i met in new york i feel like they are good people and i can trust every one of them

[Charlie Girl] 11:19 pm: I do know, especially after getting to know admins on different sites. They affect the tone of the site and they type of people they attract.

[Katiekat] 11:19 pm: well we are the lucky ones who got to participate

[Unicorn] 11:20 pm: we were the lucky ones indeed

[tigger] 11:20 pm: that is for true KK

[puzzled] 11:20 pm: true

[Charlie Girl] 11:20 pm: I am too Maria or we wouldn't have met you or gone to NY or met Tracy and Lori

[lookingforhelp] 11:21 pm: Oh, thank you so much. Shire and we are the lucky, blessed ones... You all made a difference I am sure!


[Katiekat] 11:21 pm: karma
[puzzled] 11:21 pm: i remember when you ladies were saying that you were checking it out

[puzzled] 11:21 pm: yep karma
[Unicorn] 11:21 pm: i have to get ready to go, 5am comes soon
[puzzled] 11:21 pm: k
[Unicorn] 11:21 pm: yes karma for sure
[Katiekat] 11:21 pm: nite Uni
[puzzled] 11:21 pm: nitey nite uni
[tigger] 11:21 pm: ok goodnight uni\
[Unicorn] 11:22 pm: night night
[Charlie Girl] 11:22 pm: Sweet dreams Uni!
[bugsmom] 11:22 pm: g/n uni


[puzzled] 11:22 pm: i know you ladies are real detectives.....lol
[Unicorn] 11:22 pm: speak to you in the am

[puzzled] 11:22 pm: ferret out those neredowells....

[lookingforhelp] 11:22 pm: Oh. Well, I just felt so bad when it took a awhile to get things moving, cause as I said pharma co's have to get things approved and get their ideas in order...I remember you were nervous. You are a good admin! protecting your family online!

[Charlie Girl] 11:22 pm: I think we did a pretty good job. If Maria wasn't for real, she would have given up. lol

[The Lounge]: Unicorn has left at 11:23 pm

[lookingforhelp] 11:23 pm: I told Dan that he had better get them moving so you knew I was legit. He did it. And then it all happened. I mentioned to CG offline that I was happy
it happened, so everyone would know we were serious.

[Charlie Girl] 11:23 pm: Our site is there for people who need to feel they are safe with people they can trust. Thats what makes it special.

[Charlie Girl] 11:24 pm: I go to other sites and love the members but I don't have the same level of trust as I do here.

[Katiekat] 11:24 pm: Yes I feel like I know the people here and their kids(and some Moms LOL)

[Charlie Girl] 11:25 pm: true KK
[tigger] 11:25 pm: i agree KK

[charliegirl]

lookingforhelp] 11:25 pm: Well, I am getting wiped out. Is there anytihng else i can tell Dan on your behalf? If you cannot think of it now, please PM me or write to me at my email address i gave earlier. You are all wonderful people. God bless you and your
precious children. I will wait a few minutes before leaving in case anyone wants to say anything else to me.

[lookingforhelp] 11:26 pm: Thank you for inviting me into your forum family. Thank you for your trust and friendship and help with this awesome project.

[Katiekat] 11:27 pm: Thank you so much Maria it was a great experience. I am glad I was a part of it. I hope your daughter gets used to her stander.

[puzzled] 11:27 pm: hopefully it will be ongoing

[lookingforhelp] 11:27 pm: Thaknks for that CG.

[Charlie Girl] 11:27 pm: Come post Maria. We can offer you support with what you are dealing with.

[lookingforhelp] 11:27 pm: Thanks KK

[Charlie Girl] 11:28 pm: Let Dan know that if there is a next time, we won't delay you. lol

The chat ended at that point.

Feel free to ask questions or add comments

[charliegirl]

Something that was discussed in the meeting but not talked about in the chat was the need for newbies to the ADHD world to have access to information concerning IDEA, FAPE, 504s and other things that would enable them to learn about their children's rights under those laws.

We also discussed the need for parents to have access to information on the different ADHD meds and disabilities or conditions that are often comorbid with ADHD or even mimic ADHD and can result in a wrong diagnosis.

We talked about the different types of people who diagnose and work with children with LDs and who we believed should be allowed to diagnose ADHD.