We want to hear your voice. This may be as a family carer, it may be as a professional working in the sector. We are keen to build links with as many organisations and people as possible. We want to hear your views and help you to get those views heard. We want to help you shape local services and make changes for the future.
I have two daughters and two bonus sons, at two I recognised some autistic traits in my daughter, but it was almost impossible to get any professionals to recognise my concerns and refer her. I worked with her at home on socialisation and acceptable social behaviours, such as not licking strangers, we did academic work and practiced coping with sensory overload. I home-schooled for a year but family breakdown forced me to work more to support my daughters, we moved to find the perfect school to support my girls’ needs. Her first day at school with a fantastic teacher was all it took, she agreed, understood my concerns and referred my girl.
I have two parents and a mother in law that I care for all over the age of 86. Life can be difficult for them losing their independents, their mobility and their health. Over the last three years their reliance on me has increased as they become frailer. As a carer it’s a constant juggling act with work, my home life and the needs of the three people that mean so much to me. They feel guilty for having to ask so much of me, and I feel that I don’t give them enough. It’s hard as the children to now be the parent!
Unbeknown to me, life as a carer first started when I was 12/13yrs - somewhere about then anyway. My Nanna had alzheimer's and through this because of her condition moved from Bradfield St. George (Suffolk) to Ffostrasol (Wales) which was a 546 mile round trip. Going with my Dad and family to help him support my Grandad. Later through life, my Dad had Cancer and now I have a Mum who's eyesight is deteriorating with trips to hospital and a son who is on the Autistic spectrum.
I am mum to George, a teenage lad with a muscle wasting condition called Duchene Muscular Dystrophy. DMD is progressive and therefore the level of care he needs increases every year. We had some struggles with schooling but have been lucky to have an experienced and diligent team of health professionals on board.
I’m Leila, myself and my husband have Drew aged 8 and another son aged 6. Drew has severe epilepsy, global development delay and attends a SLD school. Drew cannot communicate verbally, babbles and learnt to walk at the age of six and a half, more of a toddle. He can only do this in a safe environment. His seizures and learning difficulties make doing day to day things quite hard, even getting to school can be a struggle. Drew needs help with every aspect of life, personal care, playing, feeding, changing, bathing etc. He cannot be left unattended anytime due to his health conditions. He is on a complex medical diet called the ketogenic diet and has a gastrostomy.
Our five-year-old daughter Addie acquired a brain injury in 2014. Life has certainly not been the same since. Living with daily, uncontrollable seizures and a complete change in personality makes family life more challenging, especially for Addie's twin sister Izzy. Finding the right kind of support has been difficult and there aren't enough facilities to give Addie the life she deserves. She doesn't attend any after-school/weekend clubs because of her complex needs and her life is markedly different to that of her sister's. it's heart-breaking. My hope for the future is that one day there will be more opportunities for awesome children like Addie to excel.