Lyla's story

My daughter Lyla is 7 and is in P2 at our local primary school. She’s that kid who loves school, she’s sad when it’s time to say goodbye to everyone at the end of term. She shrieks with joy when we pull into the street the school is on, it’s one of her happy places. Everyone knows Lyla. It’s fair to say that she stands out with her big open smile, her pink glasses, her posse of friends –  oh yeah and her pink sparkly wheelchair. 

Lyla was born with a rare brain disorder called polymicrogyria, as a result, she has quadriplegic athetoid cerebral palsy and dystonia. Basically she has a lot of cerebral palsy. She also has a lot of personality, determination, and love. None of Lyla’s friends really care about her diagnosis and what she can’t do. 

I’d be lying if I said educating Lyla in a mainstream school was easy. It takes constant planning, tweaking, and collaboration between her teacher, her two assistants, her therapists, and myself. Accessibility hasn’t been an issue given that her school was newly renovated complete with lifts and a hygiene room shortly before Lyla started nursery in the same building. 

Fostering all our expectations of how Lyla learns and how she demonstrates that learning has been harder than any physical adaptations. There are no magic tricks, no special equipment, no secret techniques that teachers in specialist schools know that would make Lyla’s school experience any different, better or more successful than the one she is having in the mainstream. She is learning, she is happy, she is where she is meant to be.

Lyla’s education is never going to look like anyone else’s. We don’t need everyone to be the same to be educated together. She doesn’t have to earn the right to be there. She has a right to be included in her local primary school for being herself.

Simply being alive is exhausting for Lyla so building up stamina to last the full school day is a work in progress. Lyla finishes school an hour earlier each day. It has taken 2 years for her to build up from 3 hours a day to 5 hours a day of school.

Entering school via the playground was hugely stressful for Lyla so we quickly adapted to entering by the foyer so she has a quieter start to her school day. She needs extra time for hoisted transfers from her wheelchair to her indoor chair and standing frame so she leaves class a little early for break and lunch so that she gets to play with her friends as well as having her snacks. Some days when her dystonia is particularly painful she might spend time in a quiet comfy room known as the Snug where she can take time and come back to class when she has had a rest. 

Every day is different and her days rarely look like anyone else’s but that’s ok. The specific things she needs might change as she gets older or they might stay the same. What we’ve learned is that it doesn’t mean she needs to be educated anywhere other than her local primary school.  

When we look at education for all we have to adjust our expectations of what a successful school day and school experience looks like. Once we accept that not everyone’s school day has to look the same to be successful it’s easier to imagine a truly inclusive education system. 

What makes the biggest impact for us is that the school wants Lyla to be there, that her assistants and educators believe she belongs in their school, that they don’t want to give up after every difficult day. They know that the good days far outweigh the bad and that the wider school community benefits greatly from Lyla’s presence as much as she benefits from being included in a mainstream setting. 

Published by a24scotland

A24 is a new organisation aiming to support, promote and secure inclusive education for all children and young people in Scotland as set out in Article 24 of the United Nations Convention on the Rights of Persons with Disabilities. A24 are a group of parents of disabled children, self-advocates, researchers, academics, and practitioners.

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