Centre for children with Down's Syndrome

[BTsMUM]

Hi, I am a mum of a 6 yr old D with Downs syndrome. I am setting up a centre for children with Down's syndrome in Wakefield and the surrounding area.

The centre's aim will be to support families and children.

I would like to know what would be the most useful projects. Let me know what you think about the idea and what you would like to see happening at the centre if it was in your area.

Thanks

hi there BTsMUM, my DD is 5 and has DS. We are still in the middle of statementing process after our LEA refused to even assess her for mainstream school...it has been a pretty rough time for the whole family.

I am treasurer of our local DS group in Medway, and we are just widening our group to become a Kent Wide Charity.

The group are currently talking about the "way forward" and trying to prioritise needs....and education is a BIG issue.
We are hoping to set up training groups not only for us as parents but for support/education staff too.

Our immediate area of Kent seems quite well know for having very poor therapy intervention and the only real ongoing therapy my DD gets is what we pay for privately.

One thing I have also found hard is that our group mainly comprises of younger children, so there is no-one for us to feed info from personally.

If you want to speak any more about this in more depth, please feel free to email me, as the group developes, more needs may become apparent.

my details;

dinglescards at yahoo dot co dot uk

We are quite lucky in Wakefield as we have a good age range in the group. Education is a big issue here, but the LEA leave it to parental choice, on the whole, re mainstream vs special school.

My daughter is in mainstream and is doing really well. She is very challenging as are a number of other children with SEN in her school.

Have you read the info Downsed have on research re mainstream schooling? www.downsed.org

A group in Bradford do lots of training for schools etc so we felt the gap in our area was support, especially for siblings.

Hi BT's mum.....I live in Portsmouth where we have the Sarah Duffen centre which supports children with ds and their families. I dont know an awful lot about it but thought maybe it might be worth contacting them. They are very well established and have been going for years.
Just an idea.

Isn't the Sarah Duffen Centre all part of DownsEd. I have contacted them several times. It is such a sorry states of affairs....groups like ours are trying desperatley to build and "educate" not only ourselves, but those who teach our children...but the specialists such as the DownsEd trust have no funding to teach.
I was talking to the staff there before Xmas and they have had to continually cut staff and cannot provide helplines or trainng courses because they simply haven't the funding to do so.
The demand is there, our group is researching into which need is our priority, but even once we have done the fundraising, finding someone to come and do the training will just get harder and harder.

Lourobert - Thanks for posting the Downsed are based at the Sarah Duffen Centre and run some fantastic courses etc. Their website is great.

Dingle - You are so right. However Downsed are very good at what they do and I can't see them going under ( I pray!).

Many of the advisory staff from Wakefield LEA have been on courses etc. Our barrier seems to be the correct information getting through to the Class teachers and them differenciating the curriculum to educate our children at the right level, using the right techniques and having the right resources in a mainstream class room.

The down's syndrome assoc and The scottish Down's syndrome association do some great training as well.