We recently co-produced a workbook with young people with Williams syndrome (WS) aged 5 to 15 years old about their education, named “My Own Williams Learning”. As part of this co-production we wanted to obtain the voice and opinion of young people with Williams syndrome about what Williams syndrome is, what children might be good at or struggling with and what support or good practice in school looks like. The booklet contains advice and activities to help children with WS understand their own learning but can also be used by parents and teachers. This booklet will be available soon via the Williams Syndrome Foundation website (https://williams-syndrome.org.uk/clinical-guidelines/).

As part of the co-production process of this booklet we reflected on best practice to elicit the voice of young people who have intellectual disabilities. Although most young people with Williams syndrome are very talkative, they have mild to moderate intellectual disabilities and their language abilities are rarely age appropriate. In addition, they often have difficulties with language comprehension, working memory difficulties and maintaining conversations. As such, the voice of children with WS has rarely been captured before and often parents are asked to report on their child’s behalf. In our latest research, we showed that only 7% of the Education Health and Care plans of 33 children with WS explicitly reported the child’s voice in section A. Most of the EHCP’s used third person discourse to describe the child’s wishes, strengths and difficulties (Palikara et al. in press).

Photo by Jason Rosewell on Unsplash

We worked with the children either one-to-one or with small groups of up to 3 children at one time (like a focus group). All of the sessions took place online due to COVID-19.

Below are some tips that can be used by teachers and parents (and researchers!) to elicit the voice of young people with WS.

• Reduce working memory load by asking simple short questions and use visual reminders. It often helps to repeat the question in the same way (not rephrase it).
• Provide waiting time of up to 10 seconds to allow them to process the question and to formulate answers.
• Use images to introduce topics. So for example, when asking what children might be good at or need help with, it might be helpful to have pictures of topics and issues at school: maths, reading, listening, writing but also toilet, hand washing, PE, going on the bus. There are existing pictures from visual time tables that might be handy here. If there are a lot of pictures to go through, it might help to do several rounds of sorting these with the child into piles of ‘I need help with this’, ‘ I am good at this’. So introduce the pictures one by one and ask the child to sort them.
• If working with a group of children, it helps to ask the questions in the same sequence each time to support predictability of their turn.
• Finger puppets could be used to keep participants’ attention on the screen, but only when attention is waning.
• Action songs to which the children could participate can help to provide a break from talking and listening. We used them approximately each fifteen minutes.

References

Palikara, O., Ashworth, M., Castro-Kemp, S., & Van Herwegen, J. (in press). All views my own? Portraying the voices of children with complex neurodevelopmental disorders in statutory documents

Most children with Williams syndrome (WS) have difficulties with anxiety when they reach the end of primary school and they often prefer a clear structure. School transition is an important milestone in children’s school career that can be stressful. Although transition to secondary school can provide new opportunities in terms of more independence and new topics to study, it also brings a lot of fear of the unknown in terms of friends, new teachers, as well as new environment.

In our recent project around school transition, parents, educators as well as children reported their concerns before the child with WS moved to a secondary school as well as after. Before the transition, children with WS were worried about their new physical environment (where toilets would be and what to do when you get ill), parents had more social concerns and wanted to know more about who else would be in their child’s classroom as well as worried about bullying, whilst teachers were more concerned about how the child would cope with new freedom and food.

Teachers and parents expressed the need for better planning around transitions and based on our research we would like to make the following suggestions:

• Start the discussion around the child’s school transition early (start of year 5)
• Plan for additional support that might need to be in place for meeting the child’s needs in secondary schools
• Visit a number of schools (with the child with WS if possible) and try and meet the transition co-ordinators to discuss your child’s needs and the transition plan.
• Ask the child’s new school to send a map of the school and pictures of teachers with short description of nice facts about the teachers and school.
• Ask the child’s current school to provide an overview of what they found worked well and what didn’t
• Provide the child’s new school with an overview of what the child likes/ doesn’t like where the child’s strengths lies (maybe the child with WS can do a presentation or take photos themselves of their strengths, weaknesses, interests and needs.

We are currently writing up the results of this study and hope to disseminate more detailed findings soon.

This research was funded by a grant by the Baily Thomas Charitable Trust  to Jo Van Herwegen (collaborators Dr Olympia Palikara, Maria Ashwort hand Elizabeth Burchell)