Ask the ‘Expert’- The Parent Voice- Steph and Rob Hayden, Undiagnosed Children’s Day 2023

To raise awareness of Undiagnosed Children’s Day (28th April 2023), Hannah O’ Mara- Assistant Head from Birch Wood is joined by Rob and Steph Hayden for the second ‘Ask the Expert’ podcast. They candidly share the challenges and joys of raising their son Max, who has an undiagnosed syndrome. Their honest and powerful incites into the perceptions of society and the feeling of belonging that comes from being a part of a special school community is something that everyone should listen to (link below).

For me personally this podcast raises so many questions about the way professionals interact with families and children who are on the receiving end of policies and approaches. ‘Learning from Excellence’ (@LfEcommunity) is an independent health initiative bringing together doctors and other health professionals who have been capturing and studying peer – reported excellence in healthcare since 2014.  In a recent tweet they claimed (@LfEcommunity)

“If we talk about our patients with the assumption that they are “on the same team” as us, we choose different words. This can make a big difference to our work, and to the patient experience.”

My view is this approach is also particularly powerful with SEND. By extension, truly listening to, and understanding our families experiences is demonstratively helping inform our strategy and practice in an environment where understanding the individual is paramount. The expansion of this relationship based approach sits alongside expert teaching and research informed practice to enrich and genuinely inform our curriculum and approaches.

Further to this and at the heart of this project, we hope sharing these experiences through the ‘Ask the Expert’ podcasts will shed light on the human experience of having a child with a disability. Through this we hope to promote understanding and inclusion, whilst giving parents a platform and community to counter the sense isolation, which Steph and Rob articulate so well.

In a world of education where the debate about labels and diagnosis rumbles on, it is perhaps interesting that so many families are impacted by a lack of medical diagnosis, to the extent of wanting schools like ours to mark out a particular day to raise awareness. Listening to ‘the why’, highlights this is very complex and personal, and not simply a deficit or medicalised approach to SEND. A greater respect and empathy about what diagnosis means to families and children could help unpack some of the tension within the SEND system. It is definitely not about ‘otherness’ or lack of aspiration, quite the opposite, for most its about coming together around that child with understanding and ambition to help them achieve their personal best.