Julie Evens - Chair & New Parent Contact

I believe that a group like Up on Downs is vitally important for families of children with Down's Syndrome. Other parents can be such a fantastic source of support and information and they are amongst the few people who really understand what you are going through.

Sande Nuttall - Hon. Secretary & New Parent Contact

Like many parents I found the orginal diagnosis traumatic. Our birth story is in the Your Stories section of the site. Initially we knew relatively little about DS and what little the professionals around us knew seemed to be resoundingly negative. Added to that Florence had a difficult first year and was in hospital several times with pneumonia. When she was well, there were endless issues with hearing, heart and digestion. In spite of this, we now know more now and look forward to a positive future for her. She has started at mainstream school alongside her sister. Florence is very much her own person. She continues to teach all of us how much people with Down's Syndrome can achieve with the right support.

I don't think anyone ever forgets the support (or lack of it) that they have in the earliest years. It can set the tone for all the years to come. That is why we make new parents a priority and offer visiting, befriending and meetings for parents and babies. We also work with health visitors, midwives and paediatricians and have successfully advocated for a North Herts Downs clinic.

One of the biggest challenges I faced with Florence was accessing adequate speech therapy. This is a very common issue for many of our familes. I've learned that we can achieve the best solutions when we can pool our resources to resolve them. We have now established a Symbol-based additional speech therapy scheme for Hertfordshire. This enables the group to fund a private speech therapist and two assistants who work with children in small groups. Parents pay a contribution to each session and the group pays for tools, equipment, and the bulk of therapy fees.

Like many parents I found the special needs education system difficult to negotiate. Through meetings and training days as well as on a one to one basis, I now encourage members to share experience and advise one another. We also signpost to specialist advisory services that can give more legal and technical guidance. We promote best practice in schools by recommending trainers and arranging training in areas such as numeracy, ICT, language development, signing and positive behavour.

I believe that the core strength of Up on Downs is the friendship and empathy among its members. I enjoy arranging familiy activities and social events, trips and parties and continue to benefit enormously from the warmth, advice and company of other parents and children.

Frances Hawkins - Committee Coordinator