The mornings are changing, the night stretches on further and when the daylight arrives it brings crisper air..... This means September, stiff shoes and shirt collars. Streams of excited and nervy school children prepare for their first day back in class after 6 months of lockdown and my Facebook feed is flooded with shiny faced siblings in matching uniforms.
Our September morning sits in a parallel universe. It started yesterday with the first of the meltdowns, a barrage of objects leave my sons bedroom at high speed followed by war cries as he battles imaginary foes. Sitting on a little wooden chair I accompany him as he works through his anxiety, dodging the worst of the debris and being ready to replace the activity if it turns to self harm, ready for kisses and cuddles as he needs them, so he doesn’t have to battle the worries on his own.
An hour long meeting with the SENCO (schools head of special needs) leaves me frustrated and perplexed. Marley is the model boy in class, totally compliant, a little shy, curious and never have they seen any autistic behaviour. How can I convince the school to provide Marley with what he needs to feel safe when he hides his autism under a mask all day?! It’s the painful battle so
many parents of autistic children face. And it’s the battle Marley is preparing himself for; to put the mask back on after 6 months of freedom.
At 8.30 we stand dutifully on our yellow dot, familiar faces from Marley's class smile in the September sunshine excited to see their friends after such a long separation. I peer outwards at this far off world from our parallel bubble where the battle continues and intensifies as we move, one yellow spot at a time towards Marley's moment of doom. There are strategical plans of annihilation involving pits of knives and lava, Walls that crush and dynamite plots, detailed loudly for all the shiny families to hear. The PDA profile of autism can often be characterised by an anxiety driven need for control, explosive behaviour and threatening language. This strategising the demise of his teachers and school is a last desperate attempt for control in the face of absolute terror.
As we edge closer to a large table decked with social distancing posters and hand sanitiser, the despot character (his protector) deserts him and my tiny 6 year old boy buries his head in my stomach and clings to me for dear life. “Don’t send me mummy, don’t make me go’ comes a choked whisper.
I make eye contact with the headmaster ‘is Marley a bit tearful?’ He asks, and in that moment I try to tell him, with my eyes, of the sheer trauma unfolding in the moment. They don’t get it and a teacher peels Marley off of his mother. The blank face comes down, the mask- all that pain, uncertainty and terror locked away until home time (a time that doesn’t exist for him, a far off and unfathomable place). I stood there unable to leave my baby; after 6 months of supporting his every need and digging deep to understand what’s happening behind the outlandish performances of kings, knights and despots. She leads him away, looking back at me and tells me ‘ you go now!’ I turn and cover my face as I implode into tears of despair. The separation is too raw and I walk that parallel line past families holding it together, walking through what feels like a whole different world of pain.
On day 2 Marley had lost the battle with anxiety, as I opened the car door after a morning of explosive violent meltdowns, he leapt up and sprinted as far and fast away from that familiar building as he could. Bringing him back to safety I crouched with him as he took to his mushroom position behind the boundary wall and I called the office to ask for the SENCO. This was the moment both of our masks slipped, gone was the compliant child and gone was the dutiful citizen walking the march back to the new normal. “I need help, Marley needs help, autistic masking is real and I need you to know and believe that!” Finally we were seen in all of our vulnerability.
‘New beginnings are often disguised as painful endings’ Lao Tzu
With the SENCOS help we transitioned Marley into class over an hour, with the use of sensory toys to sooth and a phased separation from me. I saw this wonderful lady has amazing skills and finally I had her on board.
The Tao is all about letting go to make space for what is alive and real to flow........ This week I had to let go of so much. The need to be invisible and inoffensive, to have it all in hand, to be part of the norm, - so that I could advocate for my son and so that I could have compassion for myself.
Today is Saturday and my partner is out foraging chanterelles for our dinner of vegan ravioli. Our weekend woodland adventures are one of my most treasured times, but we can’t join him today.
Marley needs a quiet weekend in his den, so I had to let go of that too, and man that is tough! Processing the anger, blame and grief inside me, I had to let go of the Saturday that I had planned for myself, that I so desperately needed to decompress so that I could give Marley what he needs.
‘Give up the life you planned to find the one that is waiting for you’
I found a different solace today, quietly drawing in our crisp autumn, sunlit garden, writing my 1st blog post and dancing to a forgotten Tracey Chapman album. Being the wonderfully sensitive boy that he is, Marley felt my mood lift and now he’s dancing with me too- smiling, supported, recovering. And as long as he’s supported there will be other Saturdays for foraging in the woods together.
Marley is my Taoist master ....... he teaches me everyday to let go and find new pathways, to govern without controlling; to let go of what I thought I was so as to find out who I’m capable of being. It’s a privilege to be on the pathless path with him. Follow the ‘The Tao of PDA parenting’ to walk this journey with us.
A final note of gratitude to all who reached out to me/us through our bubble of pain, mums at school, much loved neighbours and all those on amazing parent spaces such as PDA parent space, founded by the amazing Nicola Reekie https://www.facebook.com/groups/456867405126112
Founded by the amazing PDA dad UK (watch his amazing vids on YouTube)
For every struggle, there is support 100 fold in the SEN community.