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I've read through many of your posts and while it saddens me to see so many parents and carers suffering out there it gladdens me that we have somewhere to talk/vent and support each other.
My little man has severe Global Developmental Delay, in old school language he's a bit slow. However that 'bit' is over half his calendar age and he'll be 7 this year. We have to treat him as a 2-3 yr old, his language is very limited, his sense of danger is virtually nonexistant, he does really not like choices or to be denied. At his school, a truely excellent special school, he is a little joy! Helpful to the guys less moblie than him, chatty, joyous, polite, caring. At home he is a little different... beligerant, depressed, angry, uncommunicative... sometimes. We see the beautiful little boy too but no-one else ever sees the 'other'!
So many of you have posted that your little ones are at their worst at home, bless them for feeling so comfortable, safe and loved that they feel free to vent all their frustration and anger at us. Really we should feel blessed! :-)
My question is does anyone know of a specific support group/network for families like ours with severely delayed children? While their needs may not be so extreme as others the issues put just as much strain on them and the people around them.
And if there isn't anywhere out there then I might just have to start one!
We have a 6 year old with GDD. Your son sounds so much like him! And yes our Toby always reserves his worst behaviour for his parents!
I know of one support group for parents of children with GDD. It is on Facebook here
I am about to join it!
hi i hav a daughter who is 3 who has been recently diagnosed with severe global developmental delay or uknown origin .i have done research on the net to try and find some insight to how this may affect her in the future nut can find nothing only other option i have is to contact someone who has the same situation . so hope you dont mind. many things in your post is pretty much the same as my daughter im looking for some who will share there experience on severe global developmental delay and to inlighten me on there childs progress since 3 yrs of age so i no what to expect in a couple of years . my daughter cant walk cant talk cant fedd herself and as been diagnosed with a age bracket between 8-12 months old. If you could email me i would be very gratefull thank you
Thanks for your comment. I work on the website and have removed your contact email from the webpage, but have passed your details onto the helpline, so someone should be in touch with you shortly.
All the best,
There is substantial research to show that Sodium Valproate (EPILIM) causes birth defects if taken during pregnancy.
It is important not to stop taking medication without seeking medical advice.
My Son has Fetal Valproate Syndrome, he is on the autistic spectrum, has global developmental delay, dypraxia, speech and communication problems.
He will never live independently.
www.oacs-uk.co.uk is there to support people and their families.
This invitation has been passed to me and my Son is now registered, do you know anyone, of any age, with a physical, mental or learning disability whose Mother has epilepsy or mental health illness? The medication the Mother took while pregnant may have caused the disability in the child. Can you pass this invitation on to others and publicize on social networking sites. Thank you.
INVITATION TO TAKE PART IN AN NHS RESEARCH STUDY
We are undertaking a study to try and learn more about Fetal Valproate Syndrome.
We want to find out more about how it affects individuals with the condition, and their families.
We are keen to hear from people with this condition who would be interested in taking part.
The study will involve a short interview, undertaken at home, with children who have Fetal Valproate Syndrome and with their parents, together with the collection of some basic medical information.
If you would like to find out more about participating in this study please contact Kate Strong
(0161 firstname.lastname@example.org) in the Genetics Research Department at St Mary’s Hospital in Manchester and we will send you an information sheet with more details.
0808 808 1111
Lines open 9am to 5pm, Monday to Friday
Charity number 222377 (England, and Wales); SC041079 (Scotland)