“Despite appearances… this was not an inclusive culture… there needs to be change.”
G is 7, he was diagnosed at the age of 4 with ADHD and autism, specifically he sits somewhere on the Pathological Demand Avoidance (PDA) spectrum, he has extreme anxiety and sensory needs.
G loves animals, all animals without exception, he is especially fond of cats, big and small. He loves the planet, and he is very caring about his friends and family members, they often get counted and ranked in various creative ways.
When G is very anxious, he can become more and more obsessive and reluctant to engage in the ‘real world’. He loves jiggling and being high up and is never still in one place. He doesn’t hug but does need contact, heavy caring pressure applied by a trusted adult, weighted blankets don’t cut it.
G has had an EHC Plan since the beginning of Year 1, he is now in Year 2, this helps him cope at mainstream school and provides him with access to trusted adults that know his needs and advocate for him when needed. After an unexpected exclusion we discovered the hard way that his needs weren’t met, reasonable adjustments in place at school now mean he has access to sensory circuits and is allowed to retreat to a safe space, has support with writing and has very close relationships with his Learning Support Assistants (LSAs).
These wonderful people are the bridge between the family home and school and without their commitment, determination, and love for our son, G would not be able to access a mainstream setting and we would currently be fighting the other mainstream uphill battle, the attendance blame game.
So we are the lucky ones, we have these provisions in place, G is in an inclusive environment, right? Well, lately this perspective has been challenged and we worry the broader system appears inclusive but isn’t actually inclusive. It’s only after diagnosis and going through process to get provision in place and thinking, that’s great he has understanding and support in place to realizing the journey of fighting and advocating continues and will never end. Not because of the brilliant individuals day to day but because not matter how loud and impactful the current dialogue is on inclusion in education and society more broadly, it is not cutting through to the core of some institutions and their culture. This is not their intention. In fact most talk a good game, which they no doubt believe, in principle. However, our experience highlights the gap, which we believe it is far from this; yes it will be due to the pressures they face from above. With more SEND children in mainstream than ever before, yes because of greater diagnosis, but also due to a massive recent underfunding of specialist provision, there must be a reevaluation of what successful outcomes and endpoints look like for this group of pupils, so that schools can demonstrate their successes as a truly inclusive culture. There must be change and we will explore what this could look like in future blogs.
“At the moment we are a working family”
We have discovered the voices of his advocates, like the LSAs are not always heard during decision making. The system can exclude (for context read blog 1: the trigger) a child in a split second without any thought to consult with the people who know his needs and differences. This suggests to us that despite appearances on websites and other messaging that this was is not an inclusive culture or organization and there needs to be change at the top in terms of attitude towards hidden disability and organizational understanding of it. When a school strives for complete parity with setting the same standards for all children, this directly excludes children with all disabilities in their care, because they have the same expectations of them as neurotypical children.
At the moment we are a working family. Whether we can both continue in the careers we have strived for is currently unclear. We will always prioritise providing the environment that our child needs and deserves. At times we have found it impossible to navigate school, and quite frankly we have had a proper shocker of it recently. But we walk on every experience a piece of armor we learn from and will hopefully protect us from repetition in the future.
For the record we need to say clearly:
- It is awful that our child hit an adult at school.* We are sorry. That person did nothing wrong; they were just a victim of circumstance.
- It is both shocking and depressing that the school leaders’ first response was to externally exclude an autistic 7-year-old, who had been failed on their watch.
After all, it was only through their failures that G hadn’t been given the tools at this time to regulate. We know that blame is not healthy, we need to move one, but we want as many people to learn from this and not repeat the same mistakes, before, during and after exclusion.
So, this is where we are it. It happened. Now our questions are:
- How and why did it get to this point at school?
- What can we learn from this on individual, institutional, and societal levels?
- How can we help other parents facing these barriers?
Through exploring these questions, we have journaled our thoughts and are just beginning to process and order them into something that assembles a few (hopefully) useful blogs for others. Our personal aim is to ensure we fully comprehend what happened, have processed it, continue to tool-up and become stronger for our son. Also, ensuring that from now on G has access to the right people at the right time and that he gets the education he deserves and fulfils his beautiful potential.
We hope you read on to the blogs; we hope you are shocked by G’s initial treatment and our experience, but we also suspect you have found our story because you are in a similar situation. Coping and crawling from day to day, from crisis to crisis, overwhelmed by the negative and latching on to any positivity in the wonderful SEND and autism parenting communities that exist. We hope this is a safe space for you.
Whilst we are still overcoming barriers and challenges our experience has given us sheer clarity. We advocate for you, G, and we always will.
*The person was thankfully absolutely fine.