22q11 Deletion Syndrome is a genetic condition that affects the lives of thousands of people. An estimated 35,000 people live with with 22q11 in the UK. It is one of the most common genetic conditions, after Downs Syndrome, but it is frequently misdiagnosed.
One of our longest serving Beach Schoolers, ‘A’ was born with 22q11 and, with the permission of his parents, on the 22nd November we will be joining Max Appeal’s ‘Have a Brew for 22’ raise awareness of this genetic condition.
22q11 is a disorder caused by a small piece of chromosome 22 missing. However, the effects this missing piece of chromosome has is unique to every individual. 22q11 can cause heart defects, immune deficiency and anything from severe learning difficulties and developmental delay to mild behavioural problems. It can cause speech and language issues and swallowing problems. There are 180 anomalies caused by the deletion, and each individual could be affected by many of the anomalies (but not all of them) or just a few anomalies or actually have no discernible problems at all.
As 22q11 is a spectrum of disorders, as educators, we need to differentiate learning experiences for each individual with the condition. There is no ‘one size fits all’ approach. ‘A’ first joined Little Gulls aged 4 – At the time he was going through the EHC Plan assessment process and he had also recently been diagnosed as visually impaired. So I worked with his parents and used information from Appendix 1 of his EHCP application to write him an individual Risk Benefit Assessment for taking part in Beach and Forest School sessions.
Thing we have put in place to support ‘A’s Beach and Forest School Experience have included:
- Use of high contrast flags and bunting to clearly define the Beach and Forest School site boundaries;
- Giving ‘A’ the option to join sessions early to give him time to familiarise himself with the surroundings and the Beach and Forest School rules before the session starts;
- Ensuring there is support for ‘A’ during snack times and that he had adequate facilities and support for toileting;
- Differentiating activities for ‘A’s more limited fine and gross motor skills.
Going forward, we may also work on inclusion and empathy skills with his peers, to ensure ‘A’ continues to have positive social experiences at our sessions. We may also consult his parents about how we can support his confidence and behaviour management. We will also continue to regularly review his individual Risk Benefit Assessment to ensure his needs are fully supported.
‘A’ is an incredible kinaesthetic and sensory learner and he absolutely thrives in the Beach and Forest School environments. It’s an absolute joy to have him attend our sessions and I, personally, have learnt so much from him. Hopefully, by raising awareness of 22q11, Max Appeal and we can continue to work together to remove barriers for people with this condition. Hope you can join us and Have a Brew for 22q.
*This post has been written with the full support and in consultation with ‘A’s parents. Thank you for the additional photographs.