After a very eventful night of back to school Eve we were still awake at 5.30am Reilly had repeated his mantra of no school, home for a solid 3 hours before he eventually fell asleep. He didn’t make it into school today.
The irony that I was asked to be a guest speaker at the North Tyneside Catholic Schools Teachers Conference today is not lost on me because I’m certainly no expert on autism or as a public speaker. What I am able to offer though is a very detailed insight into what life looks like for me and my tribe at home. The bits schools don’t get to see. The sleepless nights, anxiety, morning struggles, marital strife, sibling worries, fears for the future and much more.
It’s a long time since i’ve spoken to a large audience about our trials and triumphs and it honestly left me utterly drained. When I hear myself talk about my family it hurts my heart a little.
We get that there are many autistic children in mainstream schools that shouldn’t necessarily be there as there is a massive lack of provision of SEN schools. The point I really wanted to get across today was life for SEN families are simply not the same as your neurotypical families. Those letters we receive regarding attendance are often the very least of our worries when you have a child at home anxious, self harming, and even suicidal in some children’s cases because school is just too much.
I was asked a great question “What can we do as teachers to help you as a parent?” Simple answer was understanding and empathy. Trust me I don’t know one parent that wouldn’t rather have their child happy and in school. Reilly not in school impacts on mine and Shanes work and our own mental health. Yet we watch him like a different child once the pressure of not attending is taken off him. So what do we do?
Seriously I don’t have the answer.
If I don’t work we don’t bring enough in to the household. If I don’t work I feel lost. I need the distraction and the focus of something else because our every conversation is about Reilly. From the broken xbox and television in the last week or so, the conversion of our garage to give our teen some desperately needed space, renewal of DLA which is always a joy, new social worker, school, no school, no sleep, medication, personal assistants, non existent childcare, self harm, funding. It never ends and the driving force behind it all one of our most precious treasures Reilly. We just want him to be happy and have the best chances in life.
I was approached later and was told that I made a big impact, some even cried. My talk would certainly change the way “that parent” is viewed. None of us want to be “that parent” we don’t have a choice.
We performed our brilliant play for mainstream primary schools Really Reilly. A performance which shows us an insight into main character autistic Reilly at school and some of the issues he has to face in school and how his classmates (and teachers) can better understand him. We would love to perform this in every school because children respond to learning through drama and retain everything so incredibly well when they are engaged. This can help roll out the message into wider communities. They go home and tell parents and siblings about what they have seen and the whole family learns.
Alison our fabulous writer and actress and her son Jay took to the stage to talk about their experience. Jay as an autistic adult did a great job in relaying his opinions on how he handled school, he actually loved his education at an SEN school and talked about his issues around food only eating baby jars until the age of six through sensory issues and what made a great teacher for him (Gemma Kendal from Benton Dene his most memorable who went the extra mile for him everytime).
Along with some of the powerful monologues from mainstage play The Life of Reilly play I feel it was a really successful afternoon. Success to me is having people leave with a greater insight and tools to make life better in school for our incredible children and their families.
A massive thankyou to Stephen Fallon for inviting us and to our Really Reilly actors, Cameron Fraser, Steve Udale and Joanne Adams.
Myself, Alison and Kelly will always strive to make a difference for these children and their families. Kelly could not be there today but she makes a huge impact through her counselling service, she is an experienced qualified counsellor who also has an autistic son. You can contact her through me and my blog if you would like more info re counselling or if you would like information regarding a performance of Really Reilly in your school.
#This is not a reflection on Reilly’s school or teachers. This is just Reilly.