A system that kept failing us
We tried other local provisions, but none were suitable. Eventually, we secured a place at a residential college in Swindon — only for it to close before he even started. Then came another placement in Dorset, but they weren’t registered with the CQC and couldn’t administer his medication. Lucas became seriously unwell and had to be sent home. All of this happened just before lockdown.
The psychiatrist and I believe this triggered a mental health crisis — a breakdown. And then we were back to square one. No school, no support, no routine.
Worse still, the local education authority then tried to remove his EHCP. That led to a Judicial Review — which I won — but the process was long, draining, and deeply emotional.
The toll of being out of education
Without structure or purpose, Lucas became increasingly distressed. His behaviours changed almost overnight. There were outbursts, verbal and physical aggression, and long periods of silence. He would flap, rock, stare blankly, and hoard items like DVDs. He stopped caring for himself and began wiping mess on his face after going to the toilet. It was heartbreaking.
At times, I was scared in my own home. He’d leave the house and disappear for hours — sometimes overnight. I hid the keys. I hid the glassware. I called the police. And all the while, I was trying to work from home and hold it together.
What helped — and what I learned
Eventually, I began to understand the patterns behind his distress. Lucas wasn’t acting out: he was trying to cope.
Here’s what helped me support him:
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Read the signs. I learned to recognise when he needed space and when he needed support.
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Don’t interrupt stimming. Behaviours like flapping or rocking are often a self-soothing response.
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Stay calm. Easier said than done, but your calm can ground them when they’re overwhelmed.
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Use movement. Long walks or drives were incredibly helpful to burn off excess energy.
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Always have favourite food/snacks on hand. When communication is limited, it’s a way to show care and meet a need without words.
It was painful to see my son withdraw into himself, to become selectively mute, anxious, and uncommunicative. But the more I understood that his behaviours were a form of communication, the better I could support him.
Where we are now
It’s been a long road, and we’re not at the end of it. But Lucas is now in a full-time placement at St John’s College in Brighton, and the change is starting to show. He has the right support around him. He’s building trust. And most importantly, he’s beginning to come back to himself.
If you’re reading this and facing something similar, I want you to know: you’re not alone. It’s not your fault. And with the right support, things can get better.