Divergent Learning Diaries

In the excellent TV series, ‘As we see it’ actor Joe Mategna plays the character Lou, whose son is autistic (all the autistic characters are played by autistic actors).  When asked about how difficult it has been raising his son, Lou expresses gratitude for everything that his son is stating that being the father of an autistic child has ‘made him a better person.’

I watched this show pretty soon after Joni’s diagnosis (Patti was diagnosed about 7 months later – I was adamant that she wasn’t autistic at all but all about the ADHD, ironically her version of ASC has turned out to be the most debilitating)  At this point I was grabbing books, watching documentaries and drowning in autism related media trying to understand what being autistic meant but also trying to find human connections, to lean in to my emotions, my sadness.

Because yes, I did feel immense sadness.  It feels utterly awful to admit this because there truly was no part of my response that wanted to change any single aspect of my wonderful daughters.  Autistic they were, autistic they are.   I have spent their lifetimes analysing and considering every aspect of their being and feeling grateful that they are ours.  But there’s a grief there that, in honesty I still haven’t wholly confronted.

Part of that grief is bound up in my reflections on my interactions with them up until that point.  Setting expectations of them that they couldn’t possibly meet, berating them for refusing to leave the house and making me late for work, being embarrassed by Joni shouting the word ‘Vagina’ on repeat in the middle of a crowded shopping centre on a Saturday, humiliated at a party when Patti kept slapping me round the face in front of other mums who were horrified at the disgrace of  a child who I was seemingly making excuses for. Sadness and guilt that I had been so wildly off point as their mum. I’m still working on letting this stuff go.

Immersion in some amazing writing and research has without doubt helped me grow as a parent.  Initially, the most marked was ‘The reason why I jump’ by Naoki Higashida, the account stunningly captured by an non-speaking autistic boy whose meltdowns felt familiar.  His articulation of what these experiences felt like were overwhelmingly moving and reading felt like I was getting a window inside my own daughters’ inner world, who despite being articulate ‘speaking’ autistic children are rarely able to tell me what emotion is stirring within them at any one moment.  Pete Wharmby’s ‘Untypical’ helped me connect on another level, questioning the  likelihood of my own (and probably my husband’s) neurodivergence.  Such texts help me feel seen.  I feel we are seen when I connect with such texts and it feels a little less lonely.  And then there’s the abundance of social media autism positive profiles and threads that belie a community desperate to receive the validation they deserve and be in all their wondrous diverse glory.  It all helps.

But reality has a habit of kicking in doesn’t it and never more than when we all have to go to school.  Joni draws in a deep breath and goes in and gets through it some days emerging relatively unscathed, others battered and bruised, aware of the expectations the world has of her fitting in and not drawing attention in any way to her own uniqueness.  Patti hasn’t attended for 9 months.  Her experience as autistic child in a mainstream secondary school was a contributing factor to a debilitating breakdown that left her staring at a wall in her bedroom rarely communicating save the occasional ‘Fuck off’ and projectile flying object.  It broke her, yet as she has slowly emerged from her own 12 year old version of catatonia she is fixated on going back to school and just living her life like everyone else.  We’d rather she stayed at home and learnt at her own pace in her own way.

Without doubt, the ‘very good’ mainstream secondary school that both my daughters attend is something that they just need to get through.  I can’t wait for this phase of their lives to be over. There’s a big question mark whether or not they both complete their formal education.  We are just going with the flow. They are incredibly skilled and smart humans who as little ones devoured knowledge and experience and came back for more.  Sadly, now its all Patti can manage to attend for an hour a day in a room separate from other students as her paranoia makes her a risk of saying or doing the wrong thing.  And Joni?  She’ll be ok I guess, until the next episode of dysregulation leads to the trauma of the dreaded school consequence system.

But of course, here’s me leading another very similar school, fully aware that there are children like my own navigating their way through their days in a similar and varying states of torment.  There are parents, just like me; disillusioned with the education system, frustration with their perceived inflexibility of the school environment and more often than not prepared to level their vitriol as how their child is being failed, directly at me.

I find myself in a unique position here, almost as both poacher and gamekeeper. But, poised perhaps to be able to take radical steps and influence the staff in my school to just do better.  To meet dysregulation calmly and without judgement and to use my position to do good and provide safety for the children that we have quite frankly failed for decades.

I know having autistic children will make me a better Headteacher.  Without doubt, like Lou,  i’m sure it has already made me a better person.

Thanks for reading.

Louise