An open letter to those in charge of educating our neurodiverse children.
This is a guest post by Lisa Formosa, on a subject very dear to my heart, as I have a son who has autism and whose needs have not always been met by his teachers and when they were, it was begrudgingly. More needs to be done for our children.
To whom this may reach,
Firstly, thank you for the opportunity and platform to speak. Even though my voice is shaking.
I am the carer of 2 children who have been diagnosed with a myriad of neurodiverse conditions.
I am an educated white woman, who is on her knees with the health, emotional and financial consequences of caring for my children. I was once a health professional with a degree, and I am now an impoverished carer. This has been a very hard journey. And one that is lifelong. Disabilities do not vanish or dissipate. Even the often invisible disability of neurodiversity.
I have experienced myself, along with many others, the hardship of trying to navigate an education system that does not have the skills, knowledge or resources to adequately care for the needs of my neurodiverse children.
When I look at this situation from a systemic viewpoint, I see so many gaps, inadequacies and pitfalls in the way our children are managed and supported.
It has taken me 8 years of learning to advocate for my children, to get to the point where i now have the capacity for us to obtain the support i need from the school. Just.
In my previous life, before becoming what feels like a half person and citizen, i was part of improving systems and processes in local councils and healthcare. I have a professional knowledge base that sees and experiences the current haphazard system and feels anger and despair.
I ask myself, “Why are there no systems to manage and support our children in the education system?”
“Why has all the accumulated body of evidence-based practice not been placed in a bundle that can be provided to teachers and parents? How is this knowledge translated into practice so there are tangible, positive outcomes for all of our children? And if there are practices in place, why have I not seen or experienced any tangible outcomes myself?”
I know there was a recent Autism review conducted by the government and a report from AMAZE on education, yet where are the deliverables? The outcomes?
This is a problem. A massive problem.
There is so much transferable knowledge around the development of:
- clinical pathways
- parent information packs
- best practice guides
- handover of wellbeing information
- rights and respnsabilites
- accreditation to create accountability and transparency.
I want to say to you, to them, to anyone. WE NEED TO DO MORE.
We need to stop this crisis that creates trauma for both the children and families. And, yes, there is clear evidence on this as well.
There are many advocacy groups and research facilities and reform bodies that have all this information. Yet, we need a platform with a clear process to get this knowledge out into the education system, for teachers and parents. These tools need to be incorporated into existing systems of assessment and reporting of the child. Let us begin to work together.
We need to do more.
Our children should not have to be excluded from mainstream education and homeschooled instead, as this is a common occurrence for children and families who are not supported. Our children have a right to have their needs assessed, managed, and accommodated in a mainstream system so they can be included in a mainstream life. We should no longer be told to toughen up and shamed.
Both my children have a high rate of absenteeism that has been necessary as there are no inclusive spaces in the school. Any support I have received I have had to request when I knew what I could actually ask for. I had to become ‘that mother’. And, luckily, I now feel
I do this for my beautiful children in whom I can see so much potential. And wonderfully, they are both growing and developing in their own ways, at their own paces. Yet at the cost of my physical and emotional health. And our financial capacity and security.
Please. We can do more, better.
Can you help me and my children so that all families can get on with supporting their children without having to mop up the trauma of an often harmful and carless education system?
The outcome I want is not to be punitive to an under resourced school. It is to highlight this as a current urgent need and to be included in any conversation so that policies, practices and systems are changed.
I have had conversations with the Independent Schol Dispute Resolution organisation which put me in touch with a disability reform government department where I have had one conversation and raised the same issues around 18 months ago. I then offered my assistance in any way I could. Yet I have not heard back. I have not seen any change at my school. I have only achieved any positive outcomes because I asked myself. I want the system to support this process of enhanced wellbeing by robust information exchange so