Ashley’s story

Ashley and his son

Seven years ago, I became a dad, overjoyed on the arrival of my son. Never did I envisage the journey that my newly born child, my wife, and I would embark on.

Over the years, it’s been one diagnosis after another. One hospital to another.

He has no awareness of dangers, and can display challenging behaviours. His anxiety can be debilitating. Sensory overload is the normal. He wakes constantly throughout the night.

I am his dad, I work full-time. I am also his carer.

Working fulltime is challenging. I often go into work sleep deprived, exhausted from the challenges at home. Medical issues, along with the wellbeing of my son and wife at the forefront of the mind. But I need to work, to pay the bills and put food on the table. Holiday allowance often used for medical appointments.

On occasions my manager may say ‘we are busy, fancy staying late and grabbing the overtime?’ Or a mate may text saying fancy going to an event on Saturday night. But I say no. Why? Because I know my family need me at home.  ADHD medication has worn off, challenging behaviours may be present, often through my son masking his anxieties and sensory overload throughout the day. Then there is the sleep routine. The nappy changes. Medication to be given.

It’s exhausting. Its isolating. And yes, it can affect my mental wellbeing.

Carers in Bedfordshire understand this. Jon, our support worker, is always on the end of the phone or email. There are coffee mornings to meet other parents and the carers grants bring us so much joy. Sometimes it’s just knowing the support is there that brings comfort and is the difference between feeling isolated or feeling supported.