He walks on a frozen lake. With each step, cracks appear under his feet, the ice splintering. Lines not quite big enough for him to disappear below the water, but enough to make the walk precarious, dangerous, uncertain. If the ground beneath his feet is unstable, how can he stride, thrive, how can he run? Instead, he must tiptoe, take small gentle steps because at any moment the layer of thin ice could crack, could shatter. With a splash! he’d be floundering in the cold, deep water.
This is my observation of how the world works (or not) for him. How I watch him navigate each day. A set of expected social norms that he fails to grasp, conversations that are not appropriate, yet he pursues them regardless. An education system which leaves him behind, bewildered and terrified. Imagine living in a world so precarious, so fragile, so unpredictable? Imaging always tiptoeing?
Having a AuADHD brain, means he is always contradicting himself, a brain that is in a state of constant battle. Autism dictating his thoughts, his behaviour, then ADHD tugging and pulling at him, derailing the stability and predictability his autism needs. He craves a routine, needs a plan, yet he’s impulsive, easily overwhelmed, easily distracted. He experiences massive sensory overload, if his clothes get wet, a child touches his bear skin, if the weather is too hot, to cold, if it rains and he’s not wearing a coat. His mind is fractured, comminuted.
At 10 he has grown calmer, more mature, he has less meltdowns than when he was younger. Though, a distance is forming between him and his peers. As they excel academically, socially, he falls behind. His classmates are kind, tolerant, they have grown up with him. His friends are used to him shouting out words or sentences, aware of his hyper-fixations on ants and dinosaurs, they smile politely, then pull away at the earliest convenience. They still invite him to birthday parties, play tag or dodge ball in the playground. But I see them turning away from him, nodding as he talks, their eyes glazed over, not listening but being polite. So, I am becoming Mum, friend, teacher and peer. I must adjust, adapt, I must be all things to him and for him.
So many SEN parents will empathise with this, will know all too well that they must become more than a parent, but a carer, a friend, a child’s everything. But I can’t be with him all day, I can’t protect him from the classroom, from his journey into secondary education.
His safety net is his EHCP, this means school must make reasonable adjustments. School will allow him to access parts of the curriculum in a manner that he finds accessible. Adaptations are made for him, when he’s overwhelmed with the noise, the pressure of learning in a way his mind can not keep up with, he can leave the classroom. He can have regular ‘brain-breaks’. School provides a safe space for him and the other kids who struggle, because so many do. He has a learning support worker, not a fulltime 1:1 as this can be challenging, but over time a relationship has developed between him and one adult who he trusts and stays near. This young man, facilitates sports, offers coaching and nurturing sessions. My son depends on him for emotional regulation, a sense of belonging and a safety net. Each morning, they work together on science experiments, sport activities and learning in a non-liner way.
His EHCP ensures that all this happens, it’s his legal right to be educated. The EHCP ensures his education is delivered in a way which suits him. The current consideration of removing EHCPs baffles me. Why would we let some of the most vulnerable children in society be forced to learn in a way that is inaccessible? Why would be expect them to socialise with children who are practically speaking another language? We’d be asking children like my son, to run in heavy boots on the iced lake, to jump and stamp while we watch as more cracks appear. Children will drown.
576000 Children have EHCPs, thousands more are awaiting panel decisions. Without such schools have no legal obligation to facilitate adaptations or adjustments. Schools, without the additional funding agreed in EHCPs may be unable to deliver 1:1 support, may be unable to offer smaller group work, or adopt individualised teaching methods like off curriculum reading. So, if the EHCP is to be removed or changed, we must be offered a reliable, suitable alternative. SEN parents and teachers/educators need reassurances that our children will not be left further behind. Most of us parents, have spent years fighting for the muffled voices of our children to be heard. Phrases like ‘He doesn’t look Autistic’ ‘He needs to learn how to behave’ or ‘I think he does this on purpose’ ‘Well everyone is a bit autistic aren’t they?’, have been offered to me by the untrained. I can imagine many SEN parents have heard such or similar ‘helpful’ observations. We’ve already sat on long waiting list for diagnoses, waiting validation that our children have an alternative way of thinking, validation that they’re not just ‘naughty’ but are in fact having meltdowns. Validation that our parenting is not to blame. A meltdown = an intense response to overwhelm. All control over behaviour, ability to rationalise is lost. It may look like, hitting, shouting, crying, spitting. But it is NOT a tantrum, it is not a child being naughty. It is a response to over stimulation, overwhelm with an inability to process the current situation.
For children with EHCPs, meltdowns will be treated sensitively, compassionately and with agreed management plans. At my son’s school, his learning support and teaching team recognise when he’s becoming distressed or dysregulated, recognise when he needs to be supported out of a situation. They adapt, adjust, they support. We are lucky, his school are responsive, not reactive. His school adhere to his EHCP, I know other schools who do not. I have heard of other schools who struggle to meet the demands of EHCPs. But we are lucky. Yet what will a world without EHCPs look like? How will our children’s needs be navigated and met? Where will the funding come from? Whose responsibility will it be to keep these children in schools, mainstream or other?
To use the words of Temple Grandin, Autism means Different not Less! She continues that the worst thing one can do (regarding educating the autistic child) is nothing! Our children deserve an education, and one that truly allows them to learn (however that might look).
As I learn how to support my son, aware of his sensory processing delays, which cause him to struggle with touch, with loud sounds. But make him love the thrill of a roller coaster, or park swings where he laughs with delight at the cool air moving around him at speed. His nightly long, hot showers that cause his skin to redden and itch where he’s addicted to the sensation. He cuddles me lots, but I must wear full length pyjamas. If the skin on my arm is exposed, he pulls the fabric down, unable to tolerate my flesh. I now know that he allows me to kiss him, but only on the back of his head, not the face. He lies spooned, his back against my torso, never tummy to tummy. He wants to be close to me, but not to face me. He wants to be close to me but on his terms. And he wants to be educated, but this too must be on his terms. His terms which currently his EHCP supports.
NURSEMUMNATURE 