Any advice on Down's syndrome groups?

Mills1234 · Postby **Mills1234** » Sun Oct 21, 2012 11:57 am

Hi, it looks like we are having a little girl with Down's syndrome. We were flagged at 1:5 at our 12 week, and now 1:4 at our 20 week with a hypoplastic nasal bone and me having very low papp-a. We are getting the new maternal blood test done to confirm the diagnosis, but the hospital is very much taking the view that she does have Down's syndrome.

I was just wondering if there is anyone locally with a down's syndrome child, or aware of a local down's syndrome group at all? I've had a look on the association links and they seem to have more in north London and out towards Teddington.

Any suggestions greatly appreciated.

anootka · Postby **anootka** » Sun Oct 21, 2012 1:53 pm

Hello,
If you are able to reach out to Contact a Family (they have a facebook page but are also part of Wandsworth Council Support services for parents of children with Disabilities) they may be able to give you quite a bit of guidance
Also contact Early Years Centre in Wandsworth
020 8946 0900
Fax: 020 8947 9506 Where
Address1 Siward Road
Earlsfield
LONDONPostcodeSW17 0LAHow to get thereBuses 270, 44, 77 and the G1 service. Earsfield BR station is 10 mins walk away.Opening hours
Opening hoursMonday - Friday 9:00am - 5:00pm
If you go on Wandsworth Council Website, reach out to Portage it's a home visit service for families with children with disabilities.

topmama · Postby **topmama** » Sun Oct 21, 2012 8:02 pm

As already mentioned, the Wandsworth Portage Service are likely to be involved with you once your daughter is born, they offer a home visiting service to families with pre-children with special needs and it is very likely your daughter will be referred to them once she is born. They are likely to know about any groups in the area.

You have probably already looked at the Down Syndrome Educational Trust and the Down Syndrome Association websites they both offer advice and support.

Mills1234 · Postby **Mills1234** » Tue Oct 23, 2012 6:00 pm

Thank you both very much for the advice. I finally managed to get hold of someone from the Downs Syndrome Association on the phone today who was a great help also. Much appreciated.

Peanutandpoppet · Postby **Peanutandpoppet** » Tue Oct 23, 2012 7:42 pm

Hi there,welcome to the club!
I have a little boy with DS he is 19months old and is thriving. There are lots of groups out there ....
Downs ed international is the leading research centre that runs courses and publish books etc.
Small steps is a charity led physio group
Down right excellent speech and language group
Portage is what you will receive when your gorgeous girl arrives- basically play therapist once a week- very helpful.
There are a million things I could tell you about.......
All I know is I don't think about DS every day anymore- life is back to normal- as much as normal is or can ever be with 2 small children.
Always happy to answer questions
Congratulations x