Swansea support Network for Children with Down’s Syndrome

Hands up for Down’s (HUFD) is a parent run support group for children with Down’s Syndrome and their parents/carers. 

Based in Swansea and the surrounding areas, the group was created in May 2014 to offer a support network to the parents of children with Down’s Syndrome as well as to offer an opportunity for the children to play together and socialise.

Their aim as a group and individually, is for the children to have additional help in areas such as Speech and Language Therapy, Physiotherapy, Fine and Gross Motor Skills, Makaton Sign Language/Signalong.

 Two members of the group have been kind enough to share their amazing stories with the National Lottery Community Fund.

Sian Roberts, a HUFD member’s son Iolo is part of the group. “Thanks to the National Lottery Community Fund and other generous donations, my son, Iolo (who’s nearly two) has attended Speech and Language Sessions organised by the Hands up for Downs support group.

Iolo, who has Downs Syndrome, sadly suffered a stroke when he was 8 months old. He had open heart surgery to close holes in his heart when he was 19 months old. For someone so little he has had to deal with a lot. The speech therapy sessions have been an opportunity for Iolo to get the extra stimulation and support that he needs to help with his development. In the sessions he can interact with the other children, in play and learning activities that have been geared towards his stage of development. Since his heart surgery he has been getting steadily stronger and seems to really enjoy the sessions.  He laughs and smiles all the way through.   He has started ‘babbling’ and trying out lots of different new sounds. He loves all the nursery rhymes and singing that we do, and with lots of physiotherapy he has even started trying to ‘dance’.

IHUFD2f we are lucky enough to continue having the sessions, I hope that Iolo will start to benefit from some of the Makaton signing that is done throughout the sessions – I just need to get him to look at me or the therapists for long enough to see what we are doing. We are facing many challenges but without the support of Hands up for Downs, the National Lottery Community Fund and others who help so much, we don’t need to do it alone.”

Kayleigh Willaims’ son Mason is also part of the group, which received funding through our National Lottery Awards for All programme.

“The Speech and Language sessions are a great time for my son Mason to not only help develop his speech but also meet new people learn new things and have fun at the same time!  The sessions give all the children confidence and well being they are fun, very interactive and hands on. It’s not too short a session nor too long it’s just enough for them to take in each particular task/game that is being carried out.  I think it helps build confidence and a sense of independence for the children as there is a lot of praise given during each session and also patience which I think is important. Watching their little faces light up when they have completed a certain task/game or turn take is wonderful.  It’s also a very needed session as it also gives the parents ideas and tips for home to help bring speech along. Mason and I love it. A huge thank you to the National Lottery Community Fund for making this happen.”

Hands up for Down’s meet up every second Sunday of the month at Swansea Central Library, in the Discovery Room on the 1st floor at 1pm-4pm.

If you would like to know more please contact Hands up for Down’s via their website or Facebook.

You can also find out more about other projects we fund by following us on Twitter and liking us on Facebook.

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