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007paul007

Friendly group called Autism Please Read

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Hi This is my first post here I have a 16 year old son who is at the severe end of the Autism spectrum , no speech , only just got him out of incontinent pads a little while , he has currently on medication for his behaviour and also has just been diagnosed with Epilepsy to add the icing on the cake.

 

Anyway I often go on the web when I have some free time or I ca get my daughter off the pc, I often go to Ebay , I have started a group called Autism on there which is for carers , sufferers, professionals and people efffected any way by Autism , although the group is called Autism we also have people who suffer or care or related in anyway to the following Aspergers and Epilepsy and even parents of children that have all the tendencies but have not been diagnosed.

 

We have just under a 100 members and it is free to join , no money is involved anywhere , people talk about things like benefits , filling in forms , education, respite, routines and medication among other things . They also come into the group during bad days and let off steam or seek advice , they help each other by advising us based on their good and bad experiences .

 

This is a friendly chat group and new members are always welcome and I am sure there are many people on here with plenty of advice and also people on here that can get help by people who understand .

 

Here is the link to the site

 

http://groups.ebay.co.uk/forum.jspa?forumID=100010794

 

We have already had some success stories , where we have been there for someone that needed a shoulder to cry on and didn't know where to turn, I ask people to come and see us as you would all be welcome to our group where every member is as valued at the next one.

 

Sorry if I have broken any rules mods regarding this posting , this is my first of many postings I hope and please check out the site yourselves , you would be gladly welcome.

 

Thankyou for taking the time to read this thread and sharing it with me .

 

Regards

007paul007

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By the way I just wanted to add that if anyone decides to join this group click on join group and it then says give reason and put something in there why you want to join and click send and then you will get an email back from me sometime later say you have been accepted and you are free to go and post and read the threads.

 

We made it a private group so it helps keep the so called trouble makers out and is also has moderators as well , we do not encourage swearing or personal attcaks of any kind on anyone .

We are a group run by members for members and it also gives you somewhere else to go while you are checking things on that site.

 

I do hope we see you there soon.

 

Regards

007paul007

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The group by the way is based in the UK but is open to members any where in the world , we have people from the US and its great to see how people relate to Autism in different countries and how they are educated.

 

Please come along and join this freindly bunch of people !

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Hi

I just want to let you know that I will be away for a week on holiday form july 8th - 15th , so anyone apllying to join the group will have to wait until I return , so i will apologise now for the delay !

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I am now back and anyone wanting to join the group but were waiting for my return now can come and join, we are even having chat hour threads in the evenings and weekends , you know the time when you can't get hold of any old and things are bad and you need to get things off your chest, anyway we all wait to welcome you new members

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I haven't clicked on the link b/c I don't unless I know the username well.

 

Just one question though...Why is it an 'ebay' link???? Strange!!

 

I'm steering clear sorry!

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Hi, It's an ebay link cos it's one of the ebay members groups.

I joined recently( found out about through browsing on ebay) and have just had a quick look and recognise a couple of names from the few forums I visit.

Haven't delved in yet though, it will take me a while to pluck up the courage to join a new group. I am really put off by groups who seem to have their own in-jokes and a bit cliquey.

Krism seems to have avoided this.

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Hi Tyler

I fully understand your concerns and I don't blame you for feeling that way.

As you guess by now I go on Ebay alot as a buyer onlyand like a lot of sites they have forum boards, well someone had posted a link to a group on there about autism and unfornately , like Waccoe says this group was abit clicky and if you did not agree with the leaders point of view , even when you giving your own honest opinion based on your own experiences , then you were removed from the group by the leader, the case being if you didn't follow the rest of the sheep.

Anyway at this point I was lost , I didn't even know about this site so I set up the group called Autism, it is free to join and consists of sufferers , carers and professionals, it is not only for people connected with Autism , it covers Aspergers, Epilepsy and other disabilities . The group is a friendly group open to all, we have made it a private group , which means that if you wanted to join you have to give a reason and then an email goes to the group leader and you get an email back to say you are a member.

The membership is done this way to hopefully stop the trolls , the group is moderated and as long as there are no swearing, personal attacks on other members , then things will be ok and no decision is made by any one person , if action needed to be taken.

All members are treated the same way and new members are just as valued as old members, we don't force anyone in any to post a thread or a reply, some people get help by just reading.

We also have chat nights where we meet up online and have a chat in the , I have been there many times myself , when things are bad and its happening in the evening or weekend and you have no one to talk to or let of steam with , so this helps people in many different ways.

I don't pretend to know everything I am no expert all I have is my knowledge of the experiences I have been through with my children and will always give an honest opinion.

If you do not want to trust the link the other way to go to it is go to ebay and click on community , click groups, type in Autism in the search groups box and click on the one called Autism and it will take you to the welcome page.

As I say on behalf of the group we welcome all new members and I understand your concerns even when people join and they might decide they don't like it we do not force them to stay or hassle them after they have gone , the only time you get an email is if a member sets up a poll and sends out an email to all members , but all email addresses are kept hidden and are secret to each member.

We have had some great success and there could be people reading this thread that could help other members of the group or even get some advice from the members of the group.

All this thread was meant to do was to let people know that this group exists and that they are welcome to join if they want to and if they don't then it will not offend us , a group is as successful as its members and we get new members each week . We are also not saying we are the best group in the world , we are fairly new and learning new things each day.

Anyway I must go now and thankyou Tyler and Waccoe for bringing up these points , I hope I have put your mind at rest and if I have not then I will understand .

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Also I agree totally with you Tylers - mum about not clicking on links unless you know the user well , unfornately we live in a world where there is not much honesty about and you read stories about people on sites not being who they say they are, I include my group as well as this site and other sites on the net , we really don't know half the time , unless you have actually met any of the people you have spoken to and even then they could be could be telling lies, That is always a good golden rule to remember , especially in this day and age.

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I joined this site, but from another site i go on, and this chap is guenuine, ebay do have a community you click on that and there are loads of groups, although i dont have much time to go on as i dont with this site, it might be nice for some of you to offer some valued advice to those already on there, i have always worried when clicking anything for ebay, but honestly this one is ok!!!

Michelle

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Thankyou lorry and Meemo for your kind words and thankyou Waccoe for the message, I will take that on board, just need to find a word to replace the other one .

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007Paul007 is just trying to offer another alternative for discussion,so it is unfair to think the group is doing anything illicit,a lot of places have groups,and within groups-message boards for them to chat on,MSN groups for example,seems very similar to this.

 

I would join,but I do not have an active account on ebay,and if I remember correctly,ebay requires the person to register with their address,phone number,and card details,if only it was easier,then again it discourages the non serious bidders,so can't fault them for that.

Edited by TuX

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Paul. Thank you for your reply. I read every word of it! ;)

You did put my mind at ease and if it's as good as the people are here, then I'll go have a brouse if that's ok. :) Thank you and I truly hope I didn't offend you in any way b/c that was never my intention!

 

To everyone else who posted. Thank you for the reassurance! :thumbs:

 

Take care everyone, and you Paul!! >:D<<'>

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Hi Tyler no you did not offend me in any way , I have big shoulders and am not easily offended , like most people who have children with Autism I think we have more things to worry about than being offended , my opinion only people , by the way I am sorry if I may of offended people by an earlier post by using the word sufferers , I am sorry if that was the wrong word to use and did not mean to cause any offence to any but it was late when I posted it and as ever my mind was doing several tasks at the same time .

Thankyou Tyler for bringing that up though about being weary , hopefully it has given me a chance to put people like yourself at risk and welcome to the group by the way , I hope you find it helpful and i am sure that if you ever decide to post that you will help other members with your experiences and advice.

Sorry to hear Tux about your dilemma and hopefully one day you will be able to join us in the group, thankyou for your kind words.

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i tried to log on using my ebay name, but couldnt dont know why :wub:

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Elaine did you go through the link I gave you or did you go into Ebay normally , don't know why you cannot sign in , sorry.

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Hi

For those people that have joined the group or are interested in joining , the chat hours will return to normal after the 6 week holidays , like most people we are finding it hard at the moment, the chat hours are a bit spasmodic and are available now and then but they will return to the twice a week mode soon !

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I didn't know Ebay had a community, mind you I try to aviod it as I nearly ended up with a pool that wouldn't fit in the garden once when I got over keen.

 

I think it's good that there are more support groups and forums starting up. It's lovely to see parents helping each other out and people will get different things from different sites.

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Sorry to hear Tux about your dilemma and hopefully one day you will be able to join us in the group, thankyou for your kind words.

Paul,I will be joining afterall,I made an account on ebay to buy an NFL jersey recently,I have sent a join request from the group site. :D

Edited by TuX

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Tux

Welcome aboard , you should of had the reply by now , I am sure you will become a valuable asset to the group , like all the members that are there !

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Hi lisann

Welcome aboard , i will be posting the chat hours next week after my kids have gone back to school, so keep checking the group for an announcement.

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Jus t to let you all know that the chat hours starting tonight will have a theme , for example tonight theme is introductions , and is obviuosly about introducing yourself and recieving a warm welcome , although we will have this theme you can talk online live about anything even hard times that you might be having , we will be having a different theme each week and the next theme will be decided tongiht by the members that are live on line in a fair vote .

i hope to see as many members new and old as possible to tonight , chat later

Paul

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How do you get onto the chat rooms, I have found the discussion boards etc but can't find the chat and whats the open times for it please, my username on there is mbiuk24 by the way

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Hi Lil

Well we don't have a chat room , we just run what is call a live chat thread , Katrina does the wednesday morning chat hour and I do sunday evenings , whenever ever I can fit it around my son. The evening ones are usually on the announcements , which is above the discussions thread.

We usually start a thread , usually called chat hour now open open, you post a reply and refresh the page and at the end of the hour or if it is popular , it is down to the moderator as to when to close it, and when they lock the topic and you can't post a reply then the hour is closed.

After a couple of times you wil soon get used to it , it is not as hard as it seems. I hope this helps, I know we are not as big and efficient as Krism but we are a friendly group that is forever growing.

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Chat hour again tonight folks , it now runs twice a week in the evenings, and once a week in the morning, the toic for tonnights chat is coping , but you can chat about whatever is on your mind or whatever is bothering you.

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For those of you that are having trouble signing into the group at the moment please follow the simple instructions below, I am sure that this will be only temporary and that Ebay will sort out the problem soon.

 

Click on yr group as usual - the url number or whatever it is will show on the address line on the top of the page. Delete the last digit and press Go and a message will come up as an error, BUT the discussions list will be on show. Click on that and hey presto - you're in!!

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I am finding this thread very interesting!!

The lack of response to it i mean. Maybe us ASD parents, grandparents and carers don't like change either..........

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Actually i find it a little bit off and overbearing. sorry, just being honest.

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I think Paul is just "bumping" the thread to remind people about the group. I'm sure anyone who starts a support group wants it to be a success and people have a choice - whether to read the thread or not or join the group or not.

 

I think there has been a good response as when I joined there were only 10 or 11 members and now there are over 200.

 

I joined a couple of months ago and then forgot about it so I'm glad it was bumped!!

 

I must admit I mainly use this site (Krism) but as far as I'm concerned you can never have too many support groups or too much access to "meet" different people with different experiences . As Nellie says (in her sig) "knowledge is power!" :ninja:

 

Denisex

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Thankyou Jadensmum for your kind words.

Kirstie thankyou for your opinion, I am just letting be people know about the group that is all as Krism often has new members, you are as welcome to the group as everyone else. Perhaps with you giving such an honest opinion you could join the group and tell people what you think.

Just for the record as well, there have been problems with logging into the group, but thankfully that has been sorted out now.

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:crying: Aw Paul !!! Now i feel like a right git! I know i sounded harsh and i'm sorry for that. Maybe when i have a little time........ Having a teenager an AS son and a newborn is very time consuming! (But excellent too ! :thumbs: )

Good luck with it anyway.

Kirstie :wub:

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