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Sen's inspiration helps others
SEN Smallwood was inspired to create a support group after meeting people in a similar situation to her own following the birth of her son Finn.
The two-year-old has Down's syndrome and after he was born Sen was put in contact with other parents including Ese Stacey, a doctor who has a child with the same condition.
After meeting other parents locally who had children with Down's syndrome and other special needs she started organising regular get-togethers.
She said, "Originally it started with children with Down's syndrome but because we met other mums in the area that have children with other disabilities and there is nothing in this area for children with disabilities we decided to open it up further."
The Seaford Down's Syndrome and Special Needs Support Group has since gone from strength to strength and has families from Seaford, Newhaven, Stone Cross and other areas who meet once a month to share experiences, different therapies and thoughts.
The group supports families with children from pre-school and school age that have Down's Syndrome to those with spina bifida and autism.
One of the parents has spina bifida and a son with Down's syndrome and there is also two sets of twins, with one twin in each family having Down's syndrome.
Sen said, "The feedback we have been getting is that people feel good to be part of a group of people that have similar experiences.
"We have one lady who is pregnant and could have a child with a disability and she has discussed the different issues and she has been encouraged by people just being there and being supportive.
"I personally don't have too many hospital appointments but it can be quite demoralising when you do and you feel like you are living a clinical life. This group gives you an upbeat face on disability."
Members of the organisation, who meet at the Downs Leisure Centre in Seaford, are often busy fundraising for the cause and looking at new ways to benefit people in similar circumstances.
Currently there are plans to work with a local counsellor who can provide services for families at no or a low cost and Ese is giving a talk next month on movement and how it affects the brain.
There are also plans for Parent Link to visit Annecy School in the future and give a talk on special educational needs.
Ese is just one of the parents to heap praise on the support group which is affiliated to the Down's Syndrome Association.
She said, "I think the group has grown fantastically in a few short months and it is a wonderful resource."
Jo Pike, who has spina bifida and whose son has Down's syndrome, added, "I think the group is a fabulous idea.
"There are support groups in Brighton and Eastbourne but nothing in between."
As well as giving support at the meetings the group is also implementing better guidance for expectant parents that have been newly diagnosed so that they can make more informed decisions.
One mum in the group has featured in a magazine and on the television to highlight the positive effects of having a child with special needs.
Ali Woodman has three-year-old twin girls Charlotte and Amelia. Charlotte has Down's syndrome.
She was contacted and agreed to appear in the publication Woman's Own after seeing the figures of abortions for people who are pregnant with a child with Down's syndrome
She said, "I wanted to have a positive effect and show that a child with special needs can be just as happy and normal as the next child.
"I didn't know Charlotte had Down's syndrome until she was born and yes it was a shock but I'm pleased I found out that way and not other way. I couldn't imagine life without her."
Liz Bur, who recently moved to Seaford, came along to the meeting for the first time last week.
Her nine-year-old son is autistic.
She said, "I think anything that helps people to not feel so isolated and where you can share information and ideas on how to support your children is good."
To find out more about Seaford Downs Syndrome and Special Needs Support Group or book a space for the talk by Ese which takes place on July 21 please call Sen on 07897 373839, email: senaysmallwood@googlemail.com or visit the website: www.seaford-dssnsg.co.uk
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Sunday 27 May 2012
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