So much has happened for our family over the last 4 or 5 years. Our children have grown older, school years have passed in the blink of an eye, preschool changes have taken place and most importantly: happy memories have been made. Sawyer is growing in to an amazing little boy, with unusually displayed yet prominent signs of empathy, emotion and happiness. Despite the demons he battles daily, Sawyer is polite, endearing and loveable. Many of the traits I feared he might never develop have – with help – started to appear, and many of the aspects of autism I feared seem to have been kept at bay. The struggle of autism and sensory meltdown continues daily, but if I’d been able to see ahead to 6-year-old Sawyer when he was diagnosed back in 2014, I would have been a happy woman. Neither Sawyer nor his autism has ever been the problem in our lives – we’re committed to helping him succeed. The problem is the system that professes to do the same.
In early 2014 my relationship with the Early Support system reached its untimely demise when Brenda told me that in her professional opinion Sawyer had ‘too many positives’ to get a diagnosis of anything. I’ll remember those words until the day I die because it occurred to me then how lucky I was to have other people around me who saw would I could see, and believed what I believed. Of course parents want to be told that there is ‘nothing wrong’ with their child – and if the excruciating waiting list wasn’t enough of a reason to give up hope, then a comment like that would sure as hell shove the nail right in to the coffin. Brenda must have sensed my disbelief at her comment because she quickly clarified that what she had meant was that the support Sawyer was being offered would be the same whether he got a diagnosis or not. It has taken me around 3 years to realise that actually, she was right.
Sawyer is now in Year 2 at school, and simply cannot access the curriculum in the same way his peers can. Although he has reading age of 11, he is considered to be behind with reading because he is unable to discuss the book appropriately with his group once he has finished. I’m reminded as I type that Sawyer learned to read in a way that the school systems fail to cater for. Instead of learning phonics and how to blend words, Sawyer simply remembered the words he had read. He stored all the words up in his brain and he taught himself to read through memory. Thank you autism. And thank you to school of course, because once he had mastered many words, he was then able to access the rules of phonics. My 6-year-old autistic son can read with more passion and excitement than most adults I’ve known in my life. Yet the curriculum doesn’t recognise those positives and his school report still came home stating an underachievement. It isn’t the fault of the teachers who are working so hard to help him – they are already exhausting their resources – it is the fault of the people at the top. The people with the money. They are the ones who refuse to help my son. They are the ones who make the decision that children should be expected to fail before they are entitled to any help. And even when they’re failing, the help may never come.
It took 2 years of preschool, a diagnosis of ASD, and 3 years of school before we had gathered enough evidence to send off for an Educational Health and Care Plan (EHCP). Along with the head of school, his teachers and the SENCO, we put together an application that shows explicitly how much Sawyer needs additional support in school. Case-studies; details of the many strategies that are in place; medical reports; psychologist reports; pictures; photographs; examples of his work – all in there. 5 years – almost the whole of my son’s life – written down, carefully adapted, and printed off in to a neatly labelled folder. Two weeks ago that folder was sent it off to the Powers That Be. Panel took place on the 1st June but it could take weeks to hear back about the decision. If we are successful in his application then Sawyer will be entitled to a sum of money that will allow his school to give him the constant and specific support he so badly needs. But pickings are slim, and I have no faith left in the system. Even if he is awarded what he deserves it could take another 10 months (at least) from now for the school to receive the money they so desperately need.
And so it saddens be to admit that Brenda was right after all. I realise now that autism was never against us, and nor were sensory issues. The school wasn’t against us and neither were his teachers. The issue that has been standing in our way for all this time is the fact that my son is absolutely and completely amazing, without question.
He simply has too many positives.