Who are we and what do we do?
|Sande Nuttall – Development Manager & New Parent Contact|
I live in Letchworth with my daughters Marion (born 1998) and Florence (born 2004). Florence has Down’s Syndrome. As Development Manager and New Parent Contact, I get involved in all aspects of the group’s programmes and development.
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.
|John Clark – Trustee – Treasurer|
I live in Ashwell with my partner Rick and our two sons Jacob and Joshua. My youngest son Joshua has Down’s Syndrome and this is how I established the link initially with the Up on Downs Charity.
I started visiting the monthly family and friends gatherings when I was pregnant as knew from 13 weeks that Joshua had Down’s Syndrome and found it reassuring to see all the children and their families and felt comfortable to ask questions and get advice.
As Development Assistant I am involved in all aspects of the day to day running of the charity.
I gained administrative experience by working for a non-profit-making housing association for five years supporting tenants with a support need and also have childcare and health & social care qualifications.
I feel so privileged to be able to give something back to the charity through my position and also to learn and train to develop personally to enable me to support families as well as my own to my full capabilities.
I will add My Birth Story to the Your Stories section of this site as soon as possible and will also include a poem that I composed after finding out the news which helped me process and deal with the situation and which others may relate to.
I live in St Albans with my husband Arron and our three children Edwyn, Rose and Rufus. Rose, our middle child born in 2010, has Down’s syndrome.
We were told Rose had DS a few hours after her birth. Rose was also born with large holes in the heart and gastric and hip problems. A few weeks after birth Rose contracted pneumonia and went into heart failure which resulted in us spending the vast majority of her first six months in hospital whilst she underwent multiple operations. It looked rather bleak for her at times but finally we were allowed to bring home a rather fragile Rose, albeit one who required significant medical care, in September 2010.
It was at this time we first came into contact with Up on Down’s and found their friendship, support and advice invaluable as we began to come to terms with the fact Rose had DS; a detail that had seemed insignificant during the previous months. The joy and relief of seeing children with DS and their families just getting on with life and having fun at normal family events at this stage cannot be overestimated and Up on Down’s provides the setting for this in a way that no other agency we came into contact with could.
As Rose has grown and her health improved we’ve had a time to become more involved with UoD events and help out occasionally; as such I was delighted when asked to become a trustee.
I live in Hitchin. My involvement with Up on Downs started in 2008 when I started volunteering as a play leader at the weekend family meetings. In this role I enjoyed playing with the children and came to know some of the families very well. I also have a background in recruitment and am currently working as a consultant in the field of psychology. In my new role as trustee, I have been able use my recruitment experience to advise the charity on meeting its safeguarding commitments. As Honorary Secretary, I also coordinate the committee meetings and liaise with staff over some of the administration. I also continue to help out with children’s activities at monthly meetings and Christmas parties. I can thoroughly recommend volunteering with Up on Downs. If anyone can spare one Saturday a month to help the charity they will find it a very rewarding experience.
|Cassie Clark – Trustee|
I am a parent of three children. My oldest daughter is 13 and had Downs Syndrome and ASD. She was born at Watford General hospital with serious heart problems and we spent many weeks and our first Christmas in hospital. It was a very special time. Much health intervention was needed from first surgery at 7 days old to full heart repair aged 4. And of course there have been ongoing general maintenance appointments and therapies ever since.
A fab health visitor introduced to some other parents of young babes with DS in Watford. This provided great friendships. I set up a support and play group for families of children with DS in Watford in 2002-2005.
My younger children include a football mad and muddy 11yr old boy and a very pink 8 year old girl who does not like Frozen (unlike her big sister who wants it to snow anytime so she can out her blue dress). The Kaleidoscope of life!
Heath stabilised, there were very many other challenges around schooling, stamina, sleep (in school but not at home!), a couple of appeals to SENDIST, the ombudsman and four schools until we found a special school place where our daughter could be happy. This is not the average pathway through education for children with DS! ASD was at the route of many difficulties – sadly no one realised at the time.
I was HR and training lead at Watford Mencap from 2001 to 2014 and in 2011 I decided to use my professional training skills to support parent carers trying to navigate SEND World. I began to deliver workshops in signing as well as Early Support, Expert Carer Health and EHCP events. Through Essential Learning & Information which I founded, I have run events for parents and practitioners across Herts; I strongly believe that by improving information as well as services and support for parents and families – all the children and yes, even parents, can be enabled to lead more ordinary lives.
In 2012 I joined Herts Parent Carer Involvement group. Now vice chair, I represent parents on SEND Reforms, Workforce Development, Early support & learning for parents and practitioners, and the new Local Offer among a variety of other things. I deliver parent perspective presentations in LA workforce training events ‘what’s working, what’s not’; recently a practitioner, a parent carer herself, thanked me saying that as a mother of a young adult, she had ’forgotten what it was like to be a carer!’
It’s hard work! But definitely a lot more manageable with support from parent carer friends. The most precious of allies – you can always find the right expert among them when you need any sort of help so I am delighted to join UOD team to support their special home grown sharing of expertise in problem solving, fun finding and more ordinary lives.
|Arron Hopcroft- Trustee|