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

i think thats a good nem butty, you could have a parents help section and all us that have children with this could give advice and tell of our experiences

Hi Jenk,

That sounds like a good idea, i did sorta think about a "your stories page" but didnt know if its too forward!!

I think also what really needs to be arranged is for those that have the time to spend on it, would they mind recieving emails from other mums in the same predicament that are new to the whole thing that may have any questions that they need answering in confidentiality???

I know its a long shot, but i think that some questions cant be answered but we can give them addresses or contacts for people who can answer them or at least help as much as they can.

Butty.xxx

great ideas butty

Cheers Doormat,

For the mo they are coming thick and fast, now all have to do is to put them into practice

I am making more spare time available in the evenings now to start sorting some things out and i have also bought a 200 page pad for all ideas contributed from here and others like yourself - now that is planning ahead - 200 pages!!!!!!

i have been checking again on google and also CAF to get further information regarding the matter, although i need to find out if we are able to do a site like this or do we need to ask permission from any one????

There are loads of different support groups and organisations online that arnt entirely huge but i may email 1 or 2 to see if they had to get permission from anyone regarding medical matters.???

Butty.xxx

butty just emailed you
there could be a forum like chat on the website similar to mumsnet, lets face it without mumsnet alot of us would no absolutely nothing regarding dla amongst loads of other things.
support group
medical information
benefits and adaptations queries and answers
wheelchair, buggy and OT support queries
addresses for toy libraries and other fun things to do in areas

and most importantly
the emphasis on not what our children cant do but what they
ARE capable of doing
and little things are big milestones in our childrens lives.

Also mentioned to butty (and this is so long off but we can dream) that wouldnt mind setting up some kind of hospice for children with GDD for either respite or just some fun time.

My head hasnt stopped spinning with this one since it started

Hi to all,

I've just been doing some research on the mencap website that has a place for GDD and as me and doormat have been discussing who to write letters to, doormat mentioned celebrities so after a bit of research the following support mencap in quite a big way, and i thought maybe, just maybe, we can present our ideas to them to see what they think and also see if we gat a responce that would be great ok so here goes:

WILL YOUNG
ANDY SCOTT LEE
LISA SCOTT LEE
JO WHILEY
LEBERTY X
CHRISTOPHER ECCLESTON
HOLLYOAKS
DONNA AIR
MICHAEL PARKINSON
RYAN THOMAS

AND THE LIST JUST GOES ON!!!!!!!!!

So guys, what do you think, should we write to these a listers in the hope of some response????????

Butty.xxx

great butty
but was thinking of adding

please dont laugh but Jordan (as she has a ds with gdd)
also david beckham ( I know he donates to charities with children with sn)

anyone else have other ones

Doormat, i think that they are great ideas.

All need to do now is devise a letter with a plan of action to present to them including our ideas and also find a way of getting our letters to them so they in person can actually read them.

That should take a while!!!!!!!!!!

Please any one else with any ideas, can you let us know as this is for everyone who wants to be involved to making a difference or at leaset getting some info out there that isnt as hard to find online.

Butty.xxx

Okay, this is just an idea, but with regards to sending the letters to people to try and get some support and backing, for those who have said that they would like to help, doormat has sugested that maybe we can put a portfolio together of our children and their individual needs and also their milestones etc.. indicating how happy they are but yet telling a little something about them and how they are affected.
I think it would be great to raise their awareness on GDD and give them a little insight into our childrens lives and the lack of knowledge regarding GDD.

If anyone would like to do something along these lines, then please can you let me or Doormat know either by catting or on this thread.

Your input would be of great appreciation.

Butty.xxx

Great ideas so far. It really is taking off
I think the letters are a good idea.

and another bump

I should be at a disco
bump bump bump bump bump bump bump

Hey Guys, how are you all???

I have been doing a draft letter and will email the results so far to you later on this evening.

I have also done a plan of the website that i need to re create on the pc which i will also send over.

I recieved the charity pack this morning but it is all very complicated, have read whether we meet the criteria for a charity and we sort of do, but it also said we set up an organisation that isnt a charity in the form of a business???

I will be looking further into it.

Speak with you all soon.

Butty.xxx

Hi, i am just about to typr the letter out and forward it to a few.

Please when you read it can you give any further information neccessary and also let me know about any parts that dont sound right as there are probably quite a few

Butty.xxx

Well done for taking this on Butty

Cheers Merlot,

I am just in the process of typing a plan of action and content for the website.

Once completed i will be emailing to those who wish to see it to ask for their further input and ideas.

Butty.xxx

any updates?
(hugs to butty for being so organised)

bump

Sorry, i am a pissed, i have done an email, but i cant work my new broadband out!! !!!!!!!!!!!!!
As soon as i know how to send it properly i will, but for the time being i need to forget tonight!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Sorry, but had one 2 many drinks too many with the new laws!!!!!!!!!!!!!!!!!!!!!
Will speak in the morning when i know more!!!!!!!!!!!!!!!!!! or should i say, when normal!!!!!!!!!!!!!!!!!

Butty.XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX
Butty.xxx

It would be nice if someone could cut out the "vagueness" of hypotonia or gdd. I try not to use the hypotonia regarding my son cause really as a word it means nothing. It dosent explain what it is and it dosent explain where it comes from, cause they dont REALLY know, just like asd and gdd.

Obviously we need a "word" to categorise what is going on but i get real p.o'd when my doc says my son has hypotonia related to autism. Huh, what? I dont like to use "clinical" words cause really they correspond to clinical remedies. I want to find out WHY my son has low upper body strength.

I sure wish you luck in the forum/web site or whatever shape your support group takes. Its only when parents come together that answers can be found and ignorance of these "problems" can be discussed. I sure didnt get much from the doctors. They are as blase as textbooks!

jypotomia is a sympton mamadadawahwah not a condition, in your sons case its related to his ASD (is he very clumsy as well?), in my dd2 case we just dont know yes, too early on. I take comfort in the fact she can walk, (albiet badly) and isnt reliant on her pushchair anymore. I think dd2 hypotonia is just that, i am not sure she has any other condition. i'm not sure if i want further testing to find out.

right i should go make her try and walk on a line again. the joys of physio eh.

should preview, hypotonia i mean.

i'm also scared that it is a symptom of something else not just hypotonia on its own. but no-one will tell me, they just brush me off.

Glad you could unwind a bit Butty .
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

see this website:freespace.virgin.net/bch.hypotonia

As asd kids have a neurological "disorder" for lack of better term, lack of muscle tone namely hypotonia is indeed a symptom of what is going on in their brains. But as a word, hypotonia explains nothing. Its like having a doctor say you have dry skin. Uh huh, but what does that mean?