Amelia & Charlotte’s Story

I am the mum of Amelia who is 19 years old. Amelia went to Reach Southwell’s young people’s club for a number of years and now goes to Women’s Group, singing and Boccia. Amelia is a lively, energetic young woman who loves gardening, swimming, singing and drama. She has Down’s syndrome and has recently been diagnosed with a ‘psychomotor retardation’ – which is an old-fashioned sounding term for neurological difficulties linked to how Amelia was responding to anxiety, stress and feelings of low mood. Amelia lives with me and her two younger brothers in Southwell, which is a small market town in North Nottinghamshire. Amelia is very much part of the community and is known by everyone. This community connection is very important to Amelia’s wellbeing and sense of identity.

The transition from school to college and adult services for Amelia was not an easy one. We did not realise for some time that Amelia was experiencing neurological difficulties linked to adjusting to the huge change from a school environment to attending college and Reach. Amelia is obviously young and younger still for her age, so being with older people was probably a shock. We now know that her withdrawal, elective mutism, self-harm and change in behaviours were to do with her struggles to cope at transition. Both Beverley, the Reach Centre Manager and Amelia’s college tutor picked up that she was struggling. Beverley suggested that we should take Amelia to the GP, which led to diagnosis and support. Once we understood the problems better we could all work together to put things in place to help Amelia find her feet.

The nature of Reach is that staff take a very holistic approach to a person’s whole needs – they go so much further than just the day care offer. They worked with us to find solutions which included providing one-to-one support by a small team of two Reach Care workers who know Amelia very well and certainly go above and beyond to support her. Beverley has worked with us to support Amelia to feel comfortable and able to participate in day care sessions. The team work with her on everyday life skills like road safety and personal interaction skills such as being able to understand a group dynamic.

Amelia is now blossoming – her attitude, behaviour, emotional state are unrecognisable from 18 months ago. A former teacher who knows her well, who met her recently, said that she was like a different young woman. Her speech and communication skills have improved immensely through coming to groups, and she has gone from not speaking to never stopping talking in Women’s Group.

It is such a joy to see Amelia progressing towards a more independent life and gaining new life-skills that will enable her to be part of the community. She goes shopping with her Reach Care workers, and can now budget, shop, pack her bags and pay herself. She is working on building her confidence so that she can access Reach trips and holidays in the future.

I want to emphasise how important being part of local life is to Amelia; we are fortunate to live in a open and welcoming community of shopkeepers, café owners and neighbours who know Amelia and she certainly has a sense of belonging that reinforces her sense of who is she. Amelia will never be invisible and I want to help Reach make this a reality for all people with learning disabilities.

Amelia with her friend Sarah at Women's Group, Southwell

Amelia has made friends at Reach both within her peer group and with older clients – this has taken a while and Reach staff have given her time and space to be able to develop these relationships at her own pace. She sees her friends outside of Reach too. Staff don’t just think about running courses, they are thinking all the time about Amelia’s holistic needs and her aspirations. This level of involvement adds value to the sessions she attends – it is a far more complex system of care than just a day service. I think it is important that donors understand this; the care doesn’t stop when Amelia leaves the building. As a parent having people who get alongside you to understand your child’s needs and work with you is invaluable.

The practicalities of daily life of supporting a young person with learning disabilities can be challenging. It can sometimes feel like a hard daily slog that can be absolutely physically and mentally exhausting. If I didn’t have Reach I am not sure I would cope. I want to make it clear that Reach is essential to me. There is no sense of institutionalism – their approach is modern and open.

Having Reach onside has allowed me to carry on having a life, to work and be a parent to Amelia’s siblings too. When things were very difficult for Amelia, the impact on family life was very stressful, now our home-life has transformed. Reach services have benefitted every part of our life. Recently Amelia, her brothers and I back-packed to Amsterdam and back – it was a wonderful trip that I could not have considered a few years ago. Yes, there were challenges but Amelia coped – we all did. The difference between now and previously is that I can have confidence in Amelia being able to cope and that she herself has confidence in herself. This means that she can experience the wider world and not be limited.

The thing is, is that Amelia has not plateaued. We have not reached a place where the care of her has become a mundane routine. At Reach there are staff who are as ambitious for her as her family is and so I feel that she has what she needs to carry on growing and developing. From September Amelia will go to Flower Pod regularly. She has a real talent and passion for gardening which we aim one day will become the basis of supported employment for her.

Charlotte, Mum to Amelia