STARTING A SUPPORT GROUP FOR GDD AND HYPOTONIA

[butty]

ok ITS A WILD IDEA, BUT ALSO VERY APPARANT THAT THERE ARE NO SUPPORT GROUPS ONLINE FOR GLOBAL DEVELOPMENT DELAY OR HYPOTONIA.

IN THE LAST FEW WEEKS SO MANY HAVE MENTIONED ONE OR BOTH OF THE ABOVE AND AFTER THE APPOINTMENT YESTERDAY REGARDING DYLAN, IT HAS STRUCK ME THAT I MAY NEVER KNOW THE CAUSES.

AFTER A LOT OF THINKING AND ANGRINESS OVER THE PAST 2 YEARS OF WAITING AND RESEARCH I HAVE GOT KNOW WHERE!!!!!!!!

I WOULD NOW LIKE TO PROPOSE THAT SOMETHING IS DONE ABOUT IT, AND I AM GOING TO LOOK AT CHARITIES AND ORGANISATIONS FOR FUNDING TO START A POSITIVE ONLINE SUPPORT GROUP.

IF ANYONE WOULD LIKE TO GIVE ME FEEDBACK ON THIS IDEA AS OF TO WHETHER YOU THINK IT IS GOOD OR BAD OR OFFER YOUR SUPPORT AND EXPERIENCES IF ANY, IT WOULD BE GREATLY APPRECIATED.

I AM NOT ON A POWER MISSION, NOR A SYMPATHY TRIP, I JUST DONT UNDERSTAND WHY THERE IS NOTHING IN THE WAY OF SUPPORT FOR OTHERS IN THE SAME CIRCUMSTANCES.

I HOPE TO HEAR FROM YOU.

BUTTY.XXX

Sorry Butty, haven't read all of this. You could do worse than just set up a Yahoo EGroup. As well as the posts and info/advice you can upload files of info and stories etc and add links to other useful websites. I have moderated one for people doing ABA with over 700 members and about another 3 for smaller groups. The good thing is that these groups are relatively private, you don't need any funding etc but they do a LOT of good, they are also relatively easy to run. Maybe you could do this in the meantime? I have also run a support group in RL for the last 6 years. This has worked well as we have stayed reasonably local without being attached to a specific Borough/Local Authority, we have avoided becoming a charity and all members MUST attend a meeting before they can join, therefore getting to know at least some of the other members. We have an EGroup with this one as well. We have meetings every other month and, while keeping it informal and friendly, we also try to have a specific topic for part of the meeting or it degnerates into only chatting rather than chatting for about half of the evening. We also hold meetings in our homes which I think has helped with the supportive nature of the group. If any of this is of interest/use I'd be more than happy to discuss further.

Hi Davoros and everyone else,

Right i am back on form after a long weekend partying!!!!!!!! 2 birthdays one friday one staurday!!!!!!!! Oh the fun

In regards to what you have said davros, yes i would be very much interested to learn more of what you are talking about!!!!!!!!!
How easy is it to do and what tools do i need on the computer oh yeah and what is it again!!???????

Sorry, i'm a bit vauge on things like this!!!!!

Butty.xxx

hiya butty, i was wondering if you were ok because not seen you on here all weekend, glad to see you have enjoyed yourself.

I was really envious of the london meet up on saturday, we should have one in the north, obviousley not yet but maybe next year or i said to davros that i would travel down to london for a special needs meet if i had enough time to plan it and DH will take me

What do you think, i think a SN meet would be really good

Hi Jenk,

I think that its a good idea, maybe arrange a short camping weekend in the lakes when weather is nice or something along those lines.

I have sorta been on here over the weekend, but was very sloshed at the time!!!!!!!

Been a bit of a mad weekend!!!!!!!!!!

How you going with the kids, are they feelin any better yet???

Need to talk to davros about her yahoo idea as sounds really good!!!!!!!!!

Speak with you soon.

Butty.xxx

yes they are a little better now although im taking ds to the doctors this afternoon to get it recorded about his depression and self harming etc.

But since he has been off school last week he is so much calmer and happier and i feel like the old ds is coming back.

The welfare officer is coming this afternoon so will see what she has to say but im prepared for her and wont take any stick.

On a good note Ds appointment with CAMHS has come through early he will now be seen on 14 Dec instead of next spring so thats really good.

I forgot how near you are to the lakes do you go quite often and can you recommend anywhere cheap to stay as me and dh have been wanting to go for a while.

speak to you soon

jen

Hi Jenk,

Glad to see you have an earlier appointment, and your right, dont take any stick this afternoon.

In regards to camping, i go to holme farm near sedburgh, it is really nice as do a farm tour for the kids also relitively cheap.

It is £8 per night for a family tent, farm tour is included in the price.

They have toilets, water facilities and showers.

It is great for the kids and is very family orientated.

Butty.xxx

Hi, sorry if I'm interrupting but I was just doing an archive search for schools and north west and this thread came up as both are mentioned.
Anyway, just wanted to say that once your charity is set up, don't forget that many local schools will have a chosen charity which they adopt for the year and fundraise for so worth contacting.
I also know that MBNA in Chester do the same and they are especially keen on smaller charities and local based ones. I think they actually have someone who co-ordinates it.
Anyway, I'll return to my school search. Hope I haven't offended by posting on the SN board.
Good luck!

cheers Homemama,

I am hoping to speak to davros later as she has another idea that will hopefully work the same in regards to a support group and raising awareness and also wont need funding as setting up a charity as i have learnt since reading the charity application pack is extremely hard work and would probably mean a lot of travel for board meetings etc.........
Although when the site is up, will do some leaflets to post around some schools and child development centres etc...........

Butty.xxx

Hi butty

All you do is register with Yahoo (not always easy), go to Groups and Start A Group. Its quite easy to run but there are lots of tricks and tips. I will CAT you if you like. It wouldn't attract any publicity necessarily but you could start this way and branch out into a proper charity when you are sober enough to understand the rules

there are some great ideas on this thread

great idea about the yahoo group

i already belong to several yahoo groups(cardiomyopathy and eczema), all very good places for support. i'll definatly be popping onto the hypotonia one when its up and running.

Cheers Davros,

i will have a look into it today!!!

Where exactly do i have to go??

Yahoo or msn???

Sorry, being a bit thick this morning, still poorly, bloody kids catching things at school and then passing it on to me, shameful!!!!!!

Butty.xxx

Hi guys,
im pretty new to this website and hve been looking for somewhere to talk about hypotonia. Im a 21 year old student and I was born with hypotonia, my parents were told I would never walk or talk, however after 8 years of physio and speech therapy, i am now walk, talk(too much so ive been told) and im a dancer and about to set up my own dnce school. Ive been thinking of doing a charity sky dive and would love to do it for a hypotonia charity. If theres anything i can do please let me know,
love Becky

lontowerbabe, this thread is 5 years old, and the vast majority of these posters will either have namechanged or are no longer on the site.

Feel free to start a new thread in the SN topic. There is a hyperlink that says 'start new thread'.

LTB, please do. I'm sure there are a lot of parents who would love your input, especially as you sound so positive.
A glimpse of the future for some perhaps.

Hi, longtowerbabe,

There is a support website for people whose children have hypotonia (for all sorts of reasons - some with serious or life threatening comorbid conditions and some simply unexplained hypotonia) and I'm sure the people on that would love to hear a positive story, as most people on the site have no answers as to why their children have hypotonia, yet, and therefore are terrified of what the future holds:

messageboards.ivillage.com/iv-ppchdhypoton