Global Developmental Delay Support for mums

[MeagsnEva]

Hi,
Ive been lurking around this site since my first daughter, Eva was born. When my second daughter, Molly reached 6 mths old we realised that she wasnt meeting milestones & were given the dreaded "Global developmental delay" diagnosis.
At 12 months we recieved a diagnosis of Angelman Sydrome.
The six months of waiting were horrific & Im sure anyone who is either going through this or has been though it will agree.
You dont really feel comfortable in joining a special needs group or anything similar as you dont know if that is what the future will hold for you.
I promised my daughter on the long nights I sat & cried with her that I would do my best to make sure that there was some kind of support network for parents in the same boat.
We are writing a website & that is one of the main goals.
Obviuosly I will refer visitors to my site to this forum
My question of you guys is - if you have a diagnosis -
where did you go for help in that "not knowing" period??
If you have no diagnosis & are worried - what helps you? what do you think might help?
Amazingly enough a diagnosis (albiet an ordinary one!) did help - although you couldnt have told me that at the time! I nearly knocked out people that told me I would feel better with a diagnosis!!!!!
It puts a lump in my stomach to think of the pain I went through in those 6 mths, it was without a doubt the darkest time of my life!
Id love some help so set this resource up.
Meagan (Eva 3 & Molly 1 (Angelman Syndrome)

[Cassalina]

I think it is a great idea, and personally think the net is the best option. Let's face it, for me it was the only place I had to look for information.

Unfortunately when you child is delayed you are constantly told by other people that "their child didn't walk until 2 - it will be okay". It wasn't until I pointed out that DD's issue was the "Global" part of the development delay that people kind of got it. I don't think people are being mean - they just don't want you to be sad about your child. But unfortunately it doesn't really help, because then you start doubting whether you are overreacting.

When you google "gdd" all you get are websites with lists of things it might be. There isn't a support forum as such. There isn't a reference to what you could be doing in the meantime before diagnosis, or what to do to get a diagnosis, or what stupid information you should be ignoring.j

It would also be great to recruit some one on one support mums in each state that would be available for telephone assistance. Mums that have been around the roundabout a bit and understand some of the therapies and early intervention that is available.

Think it is a great idea - happy to help.

[kiwibird27]

Hi ya... My daughter Megan has mod to severe global dev delay along with a host of other medical issues, Is permananetly tube fed, hearing aids and glasses.. this is secondary to a diagnosis of a metabolic condition, Congenital disorder of glycosylation 1a..... We lived in hospital for 7 months and I think the gdd was the least of our worries at the time... I diagnosis didn't really give us any new ideas, it just ensures we were able to access services more easily cause it had a name. My support as from the other hospital mummies, social workers and special needs playgroups and numerous nurses......... I went through hell but 2 1/2 years on have accepted Megan and our new life.. she attends a "NORMAL" daycare which she loves.. the teachers and children are lovely, and although other people sometimes make comments, when I point out she is happy not dead and not in pain they kinda see te happy side.

In my darkest days in the beginning, I didn't want to seek any help.. I needed to grieve and "FIX" my child, that passes with each day and we are lucky to live in an area with great services!!!

[Prickle]

In my darkest days in the beginning, I didn't want to seek any help.. I needed to grieve and "FIX" my child, that passes with each day and we are lucky to live in an area with great services!!!

Wow Kiwibird, you hit home for me with this quote, that's exactly how I felt too. I didn't want any help or talk to anyone in the same situation, I just wanted to grieve. My husband, my rock, got me to pull it together by saying she is no different now with a diagnosis than she was before it, and it's a life sentence not a death sentence.

Although my DD diagnosis is CP I am still awaiting metabolic test results, it's been 6 months now.

[naomis mum]

wow. what a great idea. we have only just received our diagnosis of a chromosome deletion that causes developmental delays and she also has autism. it has been a long hard three years and i am exhausted. we are still fighting for an "overall" diagnosis and to be honest. the diagnosis did help us in terms of understanding our daughter better, and yes, it is finally getting us some well deserved services, but our area is really hard to get them so they are shortlived. In the "undiagnosed" period i just kept calling anyone i could. i was in constant touch with the peadiatrician, GP, gastro, Ent, neuro....speechie, everyone that delt with her. peristence has paid off and i think if you know there is something wrong NEVER stop fighting for answers for your child.!

I think that a support group is paramount. Our early intervention group has one and it is truely the highlight of my week.....i love it and it is a much needed "therapy" for me.

if you want help i am happy to be of assistance! im in sydney.

[MamaRabbit]

Hi, my son has severe global development delay and requires 100% care. We are 4 years down the track and for the most part undiagnosed, we have a few hints and clues but nothing conclusive - bit like a rubiks cube in that we just can't quite get the right colours together.

I can't define his condition and needs in a word, or even a sentence or 2.....which is what the likes of Dadhc and some other service providers need in order to tick their boxes before offering therapy services, funding or respite. Elements of the system infuriate me but as one of the other mothers said, persistence pays off. I am brutally honest with all our medical providers and am firm so they embrace the challenge of finding some kind of treatment or diagnosis as well as being forthcoming with information on services etc which may help in the future (because we often get put in the too hard basket until I get loud and stomp my feet then suddenly we get flooded with information and support).

I've educated myself on as much as possible so I can speak frankly with the doctors about the future and can also challenge the system whenever I believe it is not right for my child or for others in my shoes, I don't always get results but I feel empowered for standing up for what is right and ultimately helping the disability world gain a louder and stronger voice.

For the first 3 years I tirelessly researched and searched every therapy, medication, support group etc and spoke to as many people in person and online as possible, bubhub being one of the better sites (the Angelman forum was very helpful too....even though we don't have AS). I even emailed doctors and specialists direct if I read about them online and they had a specific interest in our area....some are still on board with us today, and others have led us down another avenue which may open different doors. I suppose disability is such an unknown that no one person can tell you all there is out there.

This past year I have taken my foot off the pedal just a little to try and gain some perspective about the future and prepare for the next stage - school and respite care.

One thing I have learned is that the disability world is a very open and welcoming one if you are prepared to reach out and hunt out the true gems in the field - the volunteers, the carers, the medical and support staff - find the right ones for you because they will help advocate and support when you are low, and they will help you glide when you are on a high. There are times when its a very lonely and personally challenging journey then next thing you know it is force in numbers and it's a very bright and nourishing journey.

It's a massive rollercoaster with the highest of highs and lowest of lows, which I imagine will continue for life. I feel like I am an old hand at this now, but after 4 years know that it is only the beginning of the journey and there is still much to learn.

Anyways sorry for ranting on...did I mention it was a passionate journey too

Congratulations for taking the initiative to start a well needed support site

[naomis mum]

just wanted to mention that we got our diagnosis finally GLUT1 DS. a metabolic condition affecting the brain.

[MeagsnEva]

Hey there,
Thats great to finally have a diagnosis - how do you feel now?
I can put you in contact with a great mum about who has done the ketogenic diet if you like? I dont know anything really about the condition - how are you going finding out info & getting support?
Im in the process of doing a website & part of it I want to profile a few rare conditions - are you interested in doing a blub on Naomi??
Hope all is going well,
Meagan & Molly (Rohan & Eva)

[naomis mum]

hi there..i would be very interested....

well she was dx with autism today also....so great...another one to add to her profile....

there is a yahoo support group so that has been good...we are still waiting to hear from our neuro in regards to having or not having to do the diet. i would love to hear from your friend...why did they do the diet? was it epilepsy related?

i feel ok...some days sad, other days inspired....its just a merrygo round of emotions atm.

[MeagsnEva]

Do you think she has autism? They sometimes misdiagnose Angelmans as autism, I wonder - and Im no expert - if its when there is something "missing" in the brain that autisic features can immerge? Hmmm - one for the scientists.
The diet was seizure related yet, Ive looked at it and it does seem really hard to maintain?? I will pm you my email address.