Secondary school brings its own challenges to people with 22q11. They may find themselves on parallel tracks to siblings or friends. For example, their educational journey might peak at a later age, while other children may reach that point at 18. State exams may not be suitable for all children with 22q11, although their classmates may be preparing for these on a daily basis. They may find themselves having to leave class regularly, in order to attend medical appointments.

Mental health problems can sometimes manifest around this age, in particular, studies show that children with 22q can experience anxiety in everyday situations, even though they might not show the typical signs of distress that teachers would recognise. Children with 22q are often quiet in social situations, and occasionally this can lead to them being overlooked.

As 22q11 is often an invisible syndrome, educators and classmates may not be as sympathetic or patient as they might be with those living with more visible challenges. For example, there may be sight or hearing issues which mean that the child with 22q11 needs to sit in a particular position in the classroom. Teachers and parents also need to be aware of the social aspect of school: quite often issues arise in the schoolyard, rather than the classroom, and it’s important to be vigilant for signs of bullying or other social friction.

At 22q11, we believe that our shared experience of the system in which our children learn is an invaluable resource and a vital support within our community. We also recognise that the experts on 22q11 are those who deal with the syndrome every day: for example, the YEEP (Young Experts by Experience Panel) group is a pioneering initiative which provides professionals, family and friends with insight into the experience of living with 22q11. Their findings help to guide us, their parents, in supporting them through their educational journey.

Contact us any time to share your concerns, or to hear from other parents who are living with 22q11, just like you.