By Rosie and Jo’s mum
I think many of us have been in the position where another adult believes that they know our own child better than we do. Often this is a member of our extended family or school staff.
So why should I be recognised as the expert in my own child?
I guess it starts with the fact that I’ve known her all her life. I’ve seen or been aware of all the events and environments that have contributed to her development. I haven’t just been there for a few hours a day at school or at the occasional family party. I’ve seen her in all settings. I’ve watched how she reacted, seen the aftermath and how each new experience influenced the person she was.
As fifty percent of my child’s genes have come from me, there are significant similarities in our neurodevelopment. I have also lived for many years with the person who contributed the other fifty percent which can help me to understand the side of my child that doesn’t come from me.
I’m not saying that I experience the world in the same way as my daughter does. No parent can say that. I’m saying that there are aspects of life to which I can easily understand, predict and explain her response because I have felt the same myself. I have encountered lots of the same problems as she does.
I don’t need to share her diagnosis to say this. I don’t believe that is at all relevant. People with identical diagnoses can be poles apart in their experience of the world. Lots of parents share numerous aspects of their child’s neurodevelopment but haven’t ever pursued a diagnosis for themselves.
I am pretty clued up in terms of what works for my daughter and what doesn’t. As a parent, you experiment with strategies from the moment your child is born. Over the years since Rosie was diagnosed, I’ve picked up hints and tips from other parents of children with autism and I’ve tried and tested lots. I have a wealth of information in my head that couldn’t possibly be stored in a school or medical file. I know what we tried at what age and why it did or didn’t work. Not running a new strategy by parents before they try it just seems like a way for school staff to end up wasting a huge amount of time and effort. I’ve had to tell a fair few professionals that their tried and tested, infallible methods had been tried and failed long ago but at least they had the opportunity to find out the easy way.
I’m fairly clued up on her neurodevelopmental disorder too. I have read and discussed lots around her particular difficulties. I am not an expert in neurodevelopmental disorders but I probably know more about my daughter’s challenges than many health and education professionals, including some with a medical degree. However, I’m always thrilled to come across a real expert in the field who can teach me more and shed light on issues I’ve been struggling to understand. One three-hour assessment with an amazingly skilled occupational therapist taught me more about Jo than I had learned about her in years. I was fascinated and found my enhanced understanding immensely helpful in finding new ways to support her.
I’m always happy to learn but I’m profoundly unhappy to be lectured by professionals who make assumptions and dish out advice without the knowledge, skills or experience to back them up. I can’t accept the opinion of a teacher who says she has “worked with children with autism before and your daughter is nothing like them” but I would take very seriously the advice of a clinical psychologist, who specialises in ASD, who felt that a review of the diagnosis would be appropriate and is able to explain the sound reasons behind their thoughts. I know that I know more than that teacher on this particular but a lot less than the clinical psychologist. I would be happy to listen to the teacher’s advice about classroom support or how to help my daughter with creative writing.
The new(ish) Code of Practice places great store on working with parents to plan, implement and review provision for good reasons. The views of parents should be fundamental to the planning of their child’s support for excellent reasons. It should not ever be an afterthought or a tick box exercise.
Like I said recently to a table full of school SENCos, “A parent can be a valuable source of information about their child. Not using that resource does everyone a disservice.”