Support On World Down Syndrome Day

Today is World Down Syndrome Day, designed to raise awareness of what Down’s syndrome is, what it means to have Down’s syndrome, and how people with Down’s syndrome play a vital role in their communities.

And so, today, and indeed the last few weeks, has proved an extremely busy time for all at the Cheshire Down’s Syndrome Support Group. More on that later!

But firstly, a bit of background on CDSSG, whom the Steve Morgan Foundation have supported in their latest round of funding grants which will enable to charity to employ its first ever Education Officer.

“We have been going for about ten years now,” says Julie Duff, CEO of CDSSG.

“During that time, we have grown from an around-the-kitchen table organisation supporting ten families across Cheshire to where we are today, supporting in excess of 100 families.

“Overall, that means we support between 400 and 500 people as a minimum on a regular basis.

“We do everything from starting by having a conversation with parents before they have their baby if they received a pre-natal diagnosis of Down’s syndrome, and chatting to them about what it is like to have a baby with Down’s syndrome in 2018.

“We also go into high schools talking to pupils about friendship groups right through to parents’ social evenings where we can go out and have a laugh and chat about our children.

“And then there are family fun days as well.

“We offer a very broad level of services for our wonderful community who are great in supporting us as well, especially with events like those taking place today.”

Julie continues:  “What is particularly lovely are the friendships that have happened outside of the charity

“We will have introduced people who will have gone off and developed their own friendship groups after meeting at one of our events or pre-school groups.

“It is about knowing that there is somebody they can talk to if they have had a bad day or if the child is making a transition from nursery to primary school or from primary school to high school and not knowing what to expect.

“They have got somebody who has been through that process who can help them and give advice.

“They always have a bit of fun when they meet up as well, which is great both for the children and also their siblings.”

The CDSSG is now preparing to extend its educational support for children and their families thanks to the funding grant from the Steve Morgan Foundation.

A three-year grant of over £60,000 will help with costs for a new Educational Advocate position as well as Makaton speech and language training for the successful applicant.

“This grant is going to allow us to really build on our school network,” adds Julie.

“The opportunity to have an Education Officer who is going to build the relationship between families and schools, and help the young people become more integrated into the school day is absolutely brilliant for us.

“The feedback we have had from families about the idea of this role is so positive.

“Right through from nursery to high school level, the individual who gets this job is going to be pretty busy – but will make a real difference!

“They will help the schools in terms of providing the learning profile of a child with Down’s syndrome and help make the curriculum more accessible.

“And they can also play a part in delivering some key targets which will be identified via the child’s IEP (Individual Education Plan).

“The role will involve visiting each school once every six weeks and building up that relationship which is vital for the children.

“With how we are at the moment, we are only able to really get involved and visit a school when a child reaches crisis point.

“With this new position, intervention will have happened before that moment and that is why we are so appreciative of the funding and the difference it will make.

“With the sign language training as well, those techniques will help support the families and set the children language targets.

“The sign language training can also be delivered to the schools, so they can learn the signs they may need to help the child access the curriculum.”

Back then to World Down Syndrome Day, taking place today, in which one of the initiatives is to wear #LotsofSocks or brightly coloured socks.

Now recognised by the United Nations, World Down Syndrome Day is today, the 21st day of the third month, marking the uniqueness of the triplication of the 21st chromosome which causes Down’s syndrome.

CDSSG have pre-sold 30,000 sock-shaped gingerbread biscuits to local schools and support groups as well as delivering assemblies to a total of 10,000 pupils across Cheshire to raise awareness.

They have also been running a ‘Get up for Down’s’ campaign since January where people have run, walked, cycled or swam with the aim of reaching 213 miles (again signifying the 21st day of the third month) by today.

That all comes to an end today with a dog walk from 10am in Marbury Park in Northwich.

“It has been a very busy few weeks but we are all looking forward to it,” added Julie.

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