All About Charlie
May 14, 2012
A young boy supported by Warwickshire County Council’s Integrated Disability Service (IDS) gives a child’s perspective on how the service has helped him and his family.
Charlie Kiefte is three years old and lives with his parents, two brothers, and his sister in Rugby. Charlie has CHARGE syndrome, a condition which means he has breathing and swallowing difficulties, a hearing loss and balance difficulties. He also has Omenn’s syndrome and was born with no immune system, a thymus transplant to treat this has been successful and he is still building up his immunity as a result.
For the first 21 months of his life Charlie was looked after in hospital but now – as his condition improves – he is supported to live at home by his family and Children’s Community Nurses.
The family do so much with Charlie to help with his development, a mammoth task for mum Rachel who also has three other young children to care for. She has learned from the nurses who help the family 6 nights per week when he uses oxygen and requires regular suctioning, as well as assisting with his feeding tube and helping him to walk independently.
Donna Clifton and Val Redhead from the IDS commend Rachel’s tremendous efforts and her untiring support which has been invaluable in helping Charlie so he can now attend nursery as his older siblings did. Donna and Val wrote about some of Charlie’s experiences from his perspective which Charlie’s family are keen to share with other families.
Imagining what Charlie would say, the two professionals put together Charlie’s story:
“I have lots of people come to my home to see me. These are nurses, physiotherapists, speech and language therapists, social workers, community nurses and play therapists.
“A lady called Val from the IDS portage service comes to play with me. She brings lots of toys and my favourite toy is the ball tube but I also like singing five little monkeys and what’s in the bag is fun too!
“When my immune system started to get better Mummy talked to Val about the possibility of going to nursery. Mummy and Daddy wanted me to go to the Blue Strawberry just like my brothers and sisters did. A lady called Suzanne came to see me with Val and she talked to me and Mummy about the nursery but there were lots of things to be done before I could go.
“Val asked Mummy if I could go to Little Apples ‘Stay and Play’ group as a stepping stone for me to start at big nursery and we said yes. I have been going regularly ever since. I am sad when I have I miss sessions because sometimes I have to go into hospital.
“I usually go to play group with the nurses to give Mummy a little break. I enjoy all the activities but my favourites are painting, singing, looking at books and putting my apple on the tree. I have made lots of friends and I loved the Christmas party and meeting Santa.
“Mummy has worked hard to teach me Makaton sign language. I use it now to communicate and Val says that I have taught her lots of new signs. With my help Val can now sign all the colours of the rainbow. I am very excited about getting my new iPad as this will help people to communicate with me.
“In January I had my first experience of going to big nursery. At first I went with Mummy for just half an hour but now I am going for two whole sessions. After Easter, I will be doing another session just like the other children in my group.
“I am pleased now I am big but I will miss Little Apples, and Val who won’t be bringing me her toys to play with at home anymore because there are lots of toys and activities for me at nursery.
“I have really enjoyed meeting the people who have helped me achieve my goal to go to nursery just like my brothers and sister did. I can’t wait to meet new people, make new friends and learn lots of new and exciting things. Thank you for reading my story.”
The Integrated Disability Service provides lots of support for children and young people with physical disabilities, sensory impairments, complex learning difficulties and communication difficulties (which includes pupils with autism spectrum and specific language disorders).
The service promotes inclusion of disabled youngsters in mainstream settings, and offers practical help and advice to families at home, and about children at school, in childcare, and at play activities.
Integrated Disability Head, Lynne Barton added: “This story demonstrates how when professionals all work together with a family from the earliest possible moment we can make a long lasting difference for the future. Charlie is a delight and I look forward to hearing all about his next achievements.”
Notes to editors
Integrated Disability Service Teams
· The Child Development Service providing a co-ordinated, multi-agency assessment and follow up services to pre-school children with complex needs.
· The Birth to Three Portage Service providing home-based teaching service for babies and very young children up to the age of 3.
· The Pre-School Service, including Area SENCos, who support children in mainstream Early Years’ Settings across Warwickshire.
· The Short Break Service, who can look after children and young people in their own home environment or support them to access activities within their local community.
· The SEN Childcare Service, who support the inclusion of children and young people with SEN and disabilities up to the age of 18 in a range of childcare settings.
· The Family Key Worker Service, providing families with a single point of contact who then acts as a source of support for the family and a link by which other services are accessed.
· Social Care Service, a team of dedicated Social Care Workers and Social Workers providing services to disabled children and young people aged birth to 18 and their families.
· The Physical Disability Team, which includes Occupational Therapy and Specialist Teachers, who provide advice and support to ensure that children achieve the greatest possible independence both at home and school.
· The Autism Team, including specialist teaching staff, Inclusion Assistants, Specialist Social Worker, Connexions Personal Adviser etc; Sensory & Complex Team, including Specialist Teachers, Teaching Assistants and an Educational Audiologist.
· The Specific Language Disorder Team, which provides an outreach service to all mainstream schools and also has staff in 7 bases in mainstream primary schools.
· The Sensory and Complex Team, which is made up of staff who work with children with Complex Needs in mainstream schools and children with a Visual Impairment and Hearing Loss.
· The Connexions Specialist Careers’ Advisory Team, linked to Special Schools, they offer information and guidance to young people aged 13-19, supporting them into positive destinations when they leave schools.
· The Volunteer Team, who work alongside other IDS teams, providing extra support to children, young people and families.