A Unique Child: Inclusion - Supporting…Zack

Three-year-old Zack has thrived since accessing the specialist facilities for children with physical disabilities at Treloar’s in Alton, Hampshire – first attending Treloar’s BELONG parent and child group, then moving to the nursery aged two.

Zack’s mum Amelia says, ‘I feel reassured to know he is in good hands with people who genuinely care and who he has become attached to. Zack is a sociable little boy, who has flourished at Treloar’s and we have watched a personality evolve over the few years that we have been going.’

Zack’s disabilities are due to KCNQ2 encephalopathy, a condition caused by a rare mutation in the KCNQ2 gene. A broad range of motor and cognitive disabilities are common in this recently discovered form of encephalopathy, as are seizures, and most children with the condition are unable to function independently. In Zack’s case, he is unable to walk, talk or feed independently, while his other disabilities include a visual impairment.

According to Amelia, accessing BELONG was the first positive thing she and Zack did together, as he had been in hospital until then. It was the first sign of ‘hope’ that things for her son could be okay, living with a complex physical disability.

Zack now attends two nursery sessions per week. He recognises when he is driving into Treloar’s and enjoys hearing his mum talk to him about the nursery when they are at home.

TRELOAR’S: ACHIEVING POTENTIAL

Treloar School and College, in Alton, Hampshire, provides education, care, therapy, medical support and independence training to children and young people with physical disabilities from all over the UK and overseas. Its aim is to prepare these young people for adult life, giving them the confidence and skills to achieve their full potential.

The non-maintained school, and nursery, is for children from two to 19 years, while the college caters for the needs of 16- to 25-year-olds. In the school, young people are challenged and their abilities nurtured to prepare them for the next stage in their lives, the aim being that every student leaves having achieved at least one nationally recognised qualification.

In the college, the aim is to enable all learners to achieve their long-term goals of a more independent life and make a meaningful contribution to their community, including higher education and employment.

Founded in 1907, Treloar’s is a registered charity with a turnover of around £19m. Most income comes from fees paid by local authorities or by private funding, but an additional £2m, approximately, has to be raised every year to keep Treloar’s at the forefront of education and services for physically disabled people.

Treloar’s also offers a range of outreach services to the wider disabled community and lets its campus facilities to local sports and activity groups and for residential stays.

ENVIRONMENT

The nursery moved into its new building in September last year. The facility, which was extensively remodelled, has its own entrance and waiting area and includes special features such as a sensory room with bubble tubes, a star mat and fibreoptic lights, and a large open-plan play room with under-floor heating throughout.

A sunny conservatory area with roof lights creates space for the children to eat together and is then transformed into an arts and crafts area. Large windows and patio doors lead out onto a rubberised soft-play surface with a shade sail and an enclosed garden for the children’s exclusive use.

CARING AND INDIVIDUALISED SUPPORT

The setting is registered for children aged two to five years and offers small group sizes, with only four to six children attending at any one time. A warm, caring and inclusive environment with a highly specialised staff team, the nursery offers provision tailored to the needs of the individual child and helps prepare them to go on to other specialist or mainstream schools.

With high ratios of staff to children and consistent adult support, the nursery children are able to form attachments and be more open and responsive within their environment.

In nursery, Zack has been able to build on some of the early attachments he made with staff while attending BELONG, and it is this high level of caring and individualised support, coupled with multi-disciplinary expertise, that Zack’s parents have welcomed.

MULTI-DISCIPLINARY APPROACH

Treloar’s multi-disciplinary team of paediatric physiotherapists, speech and language therapists and occupational therapists work alongside the highly trained members of the BELONG and nursery team to create a co-ordinated service and tailor programmes for the individual child. The week is specifically designed and planned for each child, and carefully crafted targets are assessed and updated half-termly.

In Zack’s case, staff work hard to build up his muscle tone and he also benefits from the on-site health centre. He is tolerating the different positions on offer to him, such as using standing frames and specialised seating, which is enabling him to participate in all of the activities on offer.

Staff have been trained in gastronomy so they can meet Zack’s nutritional and medical needs, as he is nil-by-mouth. Zack is also nonverbal but, with the right support, is now making choices independently using symbols; and, because of his visual impairment, he is given plenty of time to process what is being said to him.

Amelia feels this integrated therapy has been paramount to Zack’s progress and well-being. ‘I don't know how I would have coped without their support, as I don’t know of any other groups like it near to home that have the integrated therapy input and access to equipment to support Zack’s posture needs.’

LEARNING

The nursery follows the Early Years Foundation Stage curriculum and, with individual support, enables each child to develop their skills in physical development, communication, engagement with their environment and sensory integration. The staff take a ‘can do’ approach that focuses on what is possible rather than on the child’s disability.

Zack’s mum loves that he gets the opportunity to access craft, mud, jelly and music within supportive equipment. She also loves that he is able to do the fun things that would normally be taken for granted but otherwise may not be possible because of his disability.

SUPPORTING PARENTS

Amelia appreciates the nursery’s commitment to communicating effectively with parents, including sharing their children’s learning journey online. The portfolio documents each child’s work and progress, as well as providing photographic evidence of the child’s achievements throughout the academic year.

Amelia says, ‘The online Tapestry that nursery uses for pictures of Zack and which we can, as parents, access from home is so lovely, as we get to see what he has been up to and look back and see how far Zack has come.’

In standard parent-toddler groups, parents or carers of children with complex physical disabilities can feel even more conscious of their child’s disability. At Treloar’s they can feel less isolated and advice is always at hand.

Because of the complexities involved, nursery staff work with parents and carers to help them learn skills for handling and positioning their child so that the children are able to interact with their environment, their families and each other.

Parents are given a supportive environment to network with each other as well as to tap into the knowledge of Treloar School staff. This includes advice that could be needed later on – for example, support with writing an Education, Health and Care Plan (EHCP).

MORE INFORMATION

www.treloar.org.uk

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