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  • Writer's pictureJadwiga T Leigh

SEND assumptions and humane practice by Clare Western, Post Programme Support Worker, New Beginnings

Recently I've come across a theme from parents who have been asking for help addressing the complex and additional needs of their children. It's a story that feels familiar to me and every time I hear it I recognise the reaction in the parent. I remember the same words, being thrown around in the same context when I was in the same situation. When parents are fighting a system not in their favour for help in identification and early intervention with marked, notable and complex additional needs in children, professionals seemingly tend to say the same thing: "There is nothing wrong with your child, their behaviour is because of your treatment of them/ experiences with them/ neglect against them" Same tune, same beat, differing lyrics that cut deeply all the same.

These parents break as they recount this to me. Every ounce of strength drains from their faces, I see a physical, visceral reaction akin to crumbling before my eyes. "I've ruined my child. I've hurt my child. I've been horrible to my child." It is the white hot anger inside of me that keeps me present in that moment. The flicker of sickening familiarity, a passenger from my past rears its head again and my resolve grows.

I grab their hand, I squeeze it, I pull it gently towards me so they'll look up; my song is confident, yet soft... Without missing a beat it's always the same "That is simply not true!" I say. "You are not to blame. This is not your fault. It is not your child's fault. It is society's fault.” I pause, give them a moment to truly hear what I’ve just said. “We haven't moved quickly enough with the times, we haven't recognised the prevalence of additional needs nor allocated the resources in time to meet that need. We didn't adapt and it hurt you both. But nothing is beyond repair. I am here now, I will help you."

I wonder, as I stare at the Educational Psychology reports filled to the brim with jargon that buries them. As I pour into the details of their child's ADHD diagnosis and the pervasive and overwhelming impact it has on their lives, how long it's been since they've heard those words: "I am here to help you."

One mother looks at me. She asks "What is SALT? What does 'phonoically underdeveloped' mean? Why are they talking about percentiles? What is the LSS? I don't understand any of this. I'm useless. I can't even understand a simple report about my daughter!"

I didn't mince my words in response. "Sod the professionals!" I stated.

She looks at me blinking, confused.

"Phrases, reports, acronyms, latin terminology mean nothing, because I bet you are one of the very few human beings on the face of this planet that knows EXACTLY how to calm your daughter down during a meltdown!"

She tearfully nodded at me.

"And THAT is precisely why I tell parents that YOU are the experts in your child's needs. No one else can do that but you. The other stuff can be learned by anyone."

As a single mother to two children, both of whom have complex, identified and diagnosed additional needs I know the overwhelming strength, love, patience and compassion it takes to wake up every morning and keep going. I know all too well that crushing assumption that the needs of my child are a figment of my imagination... A fairy tail to excuse my own behaviour... A straight lie or delusion.

But I was a rare one. Few things in life give me strength to not take 'no' for an answer and my children have always been one of the few. It still crushed me, but I was convinced that for my oldest child I was not wrong. So, convinced, I did my homework and I adapted to her needs. So when the diagnosis came in I was prepared, I was vindicated and I hit the ground running.

For others who lack this wherewithal, who are so terrified and crushed by this power dynamic that they comply with the assumption- they are the ones to blame- there is one result: Their child suffers. Unsupported and stigmatised as naughty, beligerant, non-compliant, violent, stupid, lazy or school avoidant. This in turn gets flagged, reported and ran up into escalation that appropriate, specialised early intervention would have prevented. The parent is blamed, vilified and sent on parenting courses that teach them what they already know, to develop skills they already have, to address the wrong problem.

Without the proper knowledge, without the proper support, without the proper help both child and parent alike develop maladaptive coping mechanisms that split, fracture and then compound their case, their progress and their lives. None of this surprises me. It makes me want to kick down doors and scream from the rooftops until my lungs fail and my voice breaks. It angers me that it just doesn't shock me. Because to be shocking it would have to be rare.

Neuro-diversity is becoming more and more commonplace. As science’s understanding expands and our diagnostic tools improve and yet it's not taught enough or encompassed enough to and by those meant to help our children and our families. You hear hooves and think Zebra's... Sometimes it's just horses. Sometimes... A lot of the time a different question would make all the difference: How can I help?

Social workers, health professionals, support workers, please stop asking what is wrong with you? What are you doing wrong? Why are you doing that wrong?

Instead, it might help to start by asking: what has happened to you? How are you coping? What works for you? What doesn't? How can I help?

A shift in language can fundamentally alter your role in the eyes of a family from aggressor to helper.

A humane approach towards families places professionals in a unique position of never having to roll a boulder down a hill that then becomes impossible to stop for all but the privileged few.

I cannot help but think that it saves so much more, on so many levels. Ask yourselves how many times you yourself, or others, have invested time, resources, money, the courts; in a case where a simple push for a SEND assessment and, perhaps, advocacy would have saved time, money and offered us support.

It may help to ask yourselves if knowing then, what you are reading now, would have altered or eased, not just your workload and pressures, but that of the families you interacted with.

This isn’t an easy revelation to have. It’s uncomfortable but that’s because there is truth to it. How much truth is the discomfort you’re feeling.

Being involved with the system already carries the weight of intricately woven shame and guilt that then melds with the trauma of a parents past. Akin to throwing petrol on a fire it amplifies destructive patterns and creates an intense barrier difficult for professionals or family alike to overcome. The stigma that we as parents are seen as less than deserving of our children is beyond painful. It's crushing. Nothing will crush a parent more.

We are each survivors of our own horrors, struggles, battles and trauma. Deep seeded wounds that will sometimes never show on an X-Ray or MRI, but yet these wounds are open, raw and incredibly slow to heal. Some may never do so, but we can learn to live with the pain in a productive and healthy manner. We just need your help sometimes and we need it, in a compassionate and humanely approached practice.

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