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

butty
you have my full support

can letter write
can beg if you like
can gather information
can make phonecalls

hey I can make the tea if you like

anything for a worthwhile cause to help our children and ourselves to understand the condition.
My ds2 is 8 and has severe gdd

have Cat you btw
good luck
xxx

Cheers Doormat,

I really do want to do this and i think that if we can all pull together with ideas etc... it will be something amazing and will hopefully help others in our situation.

Lets just hope that we can get some feedback, good or bad.

Butty.xxx

Doormat, i have jotted down some ideas.

i think first of all, is it a charity or a support network???

What do you think????

I will contact the pead and HV to see what they think also!!!!!!!

Butty.xxx

Does Mencap cover GDD at all?

I dont know??

all i know is that when i type in support groups for GDD there is nothing and something needs to be done about it.

Dylan doesnt have any major known problems with his brain although others may do.

What do you think of the idea merlot????

Butty.xxx

I don't know if I can be of any use, but I will help if I can.

I know Amelia has DS and "a genetic reason" to label her condition IYSWIM, but her delays are general developemental delays and she has been DX'd as a little girl with DS, GDD and significant delays in gross motor skills and SALT.

Some of the common issues with DS are those which I believe a "general" un-DX'd child with GDD suffers with too. I hope that garbled mess makes even a little bit of sense!!!

I suppose I am "!lucky" enough to have accepted Amelia's DX from an early age and almost expected the delays, we have also been lucky enough to have had at least some therapies from an early age. If I can provide any source of help, please just shout...or CAT!

Hey Dingle Cheers.

All cases sound very similar!!!!

I have accepted dylans condition and now have to face that i may never know the reason why!!!!

I dont want to come across as a patronising cow that knows nothing!!!! i just wish that more was known about GDD and the causes.

Theres so many cases and not enough answers.

All i hope to acheive is somethging where people can go with the same issues to get support and advise, i always come on here but there are people that dont have access to the internet and are asking themselves the same as what we do.

There are so many support groups and charities online, then why not raise our awareness to a ever growing dx of GDD.

Your input and support will be greatly appreciated as will veryone elses.

Butty.xxx

Okay,

I have just contacted my mums friend who is on the commitee of a local autism charity and she thinks that it is a great idea and will give any help and advise where needed.

Anyone else interested of giving specific ideas would be great.

Butty.xxx

butty it may need charity status for funding for support group
I dont really know
will ask around for ideas for you

I have a friend whose DS was diagnosed with GDD And hypertonia. She has had to fight hard to get anywhere but has dome really brilliantly. Her DS has come on really well but I know she finds it frustrating at times - no support as you have said and no ideas for the future.

I will let her know about this. She is not in the UK BTW.

Oops - hyPOtonia!!!!

Hey Doormat,

I have just contacted the charity commission and they are sending through an application pack and a guide to charity work.

I explained what was in mind and the lady was very nice and said that it is a good idea and also stated that big charities started off in the same situ!!!!!!!

Its definately worth it and i am prepared to give up my evenings to concentrate on what potentially could help and support many others.

All we need now is more interest as i am aware that it wont happen over night but all the support helps.

Butty.xxx

good news at last and this was done under an hour,
weh hey

I have most days free to help out as all my children are at school or work.
Just let me know what I can do.

hello butty,count me in ill help out where i can

Cheers guys,

all we need for the moment is support from whomever can offer it.

Once we have a few people who are really interested in dedicating spare time and their much appreciated advise, support and opinions on the whole matter, i will then devise a memo to everyone involved of which will include any matters raised by anyone also any ideas they feel will be good along with a copy of the charity pack for you all to look at.

If you are still interested then we can hopefully go for it!!!!!!!!!!

I do definately know that when starting a charity for awareness and support or any charity in that matter, you need at least 5 members on the board as well as a secretary and treasurer.

It wont be easy and will be time consuming so anyone who wants to embark on this mission of support and awareness, please post on this thread.

All support will be great.!!!!!!!

Butty.xxx

butty, whereabouts in the uk are you?

im in the northwest

Hi jenk,

I am also in the northwest!!!!!

You never know, we could live streets away from each other!!!!!!!!!!!!!!

Butty.xxx

have just sent you an email

Cheers i'll check in a mo.!!

i am just finishing work then walking home as car still in the garage as dead as door nails!!!!!!!!!

Will be back online in next 30 minutes.!!!!!

Butty.xxxx

I phoned the physio this morning as i havent had the exercise sheets through yet. i asked her expalin again what is going on and she was saying about the central nervous system being 'immature' and that aluren needs help to get it to the stage it should be. i said i had been advised about applying for DLA, she asid she was going to discharge lauren but as she is still falling over, and is dangerous walking, she is now going to make another appointment to see her and also watch her at pre-school. i think i may also video lauren so i can show her the problems we are having.

Misdee,

Do what you feel is right and is in the best interest for your ds!!!

Dont let then fob you off with anything and make sure you get that appointment.

Good luck.

Butty.xxx

Anyone else interested????

Butty.xxx

i'm in.

Cheers mummyto3,

it will take a while i presume but hopefully will get there!!!!!!!!!!!

Thanks for your support.

Butty.xxx