School classroom
Dr Katherine Gulliver conducted her PhD with four young children age 5-6 years with Williams Syndrome, a rare developmental disability, who all attended a mainstream primary school. The research investigated the children's experiences of school, including what they wanted to contribute to research about them, and what participants understood about supporting a child with Williams Syndrome in school. 
Children with Williams Syndrome may be recognised through distinct facial features, and when compared to typically developing children there can be a range of health difficulties. Infants with Williams Syndrome have difficulty sleeping and feeding, and global developmental delay means children will meet key milestones such as walking or talking at different times. Many individuals with Williams Syndrome have a slight narrowing of the aorta above the aortic valve. Hyperactivity is common, as well as hypersensitivities to noise. On the other hand, some individuals with Williams Syndrome have an affinity to music, and many have a charming personality and significant strengths in expressive vocabulary. Despite their happy nature, individuals may also experiences anxiety, phobias and challenges with concentration. 
As a rare disability, this PhD study investigates the experiences of children with Williams Syndrome in their daily school lives, using the Mosaic Approach. The study uses a strength-based view of children as capable and competent researchers of their own lives. A mixture of methods were combined to include children's own photographs, guided tours, observations, researcher fieldnotes and staff interviews. Children were continually monitored for assent using a reflective, ethically conscious total communication approach. Photobooks were created to enable children to share their research with others. 
Child with Williams Syndrome

Summary of findings

Although Williams Syndrome is a rare disability, teaching assistants working closely with children build their knowledge of how to support a child with Williams Syndrome in schools. This knowledge includes how to recognise when children with William Syndrome need support to manage anxiety, process an instruction or understand emotions. 
Interviews show how staff increase their confidence and knowledge in supporting children with Williams Syndrome, but still require more in-depth knowledge of Williams Syndrome and the child to understand the subtle ways that children ask for support.
Although the class teacher is responsible for the children, it is usually the teaching assistant working very closely with children that develop their knowledge of supporting children with Williams Syndrome.  However, it is useful for schools to learn about Williams Syndrome as much as possible, to help staff become more confident in their support, and make sure that they are meeting all the needs of a child with William Syndrome

Children’s apparent fascination with objects such as the drums or hand dryer can cause confusion for practitioners. This emphasises the problem that school staff might misunderstand children’s eagerness or repetitive talking about a sound. Children’s animated talking about certain objects might not always reflect their worries when faced with the object in front of them. It is important therefore that practitioners are informed about specific risks of anxiety for individuals with Williams Syndrome, and how it may present. 
Teaching assistants facilitate, prompt, encourage and interpret so that children with disabilities can practice and develop skills needed to interact with their peers and build friendships. However, labelling all peers as ‘friends’ may lead to difficulties in understanding the concept of friendship. Furthermore, children in primary schools need support to challenge preconceptions and develop their understanding of differences to help position children with disabilities as competent and capable but learning at their own pace. The experiences shared in this study, prompt us to consider the role of peers in inclusive settings and the differences in their expectations of children with disabilities. 
A little girl with Williams Syndrome


Orla, Sophie, Ryan and Wendy* shared their experiences of being a primary school pupil which included listening to instructions from adults and learning to take responsibility for their belongings. They each shaped the research with their unique personalities, strong interests and the spaces they used, or did not use, in their school. The four children used a range of photographs, videos, and audio recordings, and helped guide me through their week at school. The study showed that children with disabilities are capable of conducting research about their lives.
The findings highlight the differences in levels of support, understanding and knowledge from peers and staff. This included how different participants positioned a child with Williams Syndrome, or children with special educational needs, and depended on access to resources, training and experiences of disability and inclusion.  
*pseudonyms used

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Mathematics with education students working on outreach as part of the Mathematics Enrichment Project