My son is seven years old. He’s been diagnosed with a rare genetic disorder, ASD, ADHD, a heart condition, diabetes, asthma, sensory processing issues and anxiety. He’s also double incontinent and wears nappies 24/7. As he’s gets older, his diagnostic list gets added to, new challenges come and we adapt our lives accordingly.
I am 39-years-old and three years ago I had to quit my job and became a full time parent carer. It wasn’t a choice, it was a necessity. I’ve recently applied for my second carers grant via Carers in Bedfordshire. Being an unpaid carer, grants to support unpaid carers are vital to help our wellbeing and help pay for things that otherwise could be put of reach.
Due to his separation anxiety we are not able to use respite services which means all my ‘spare’ time is spent doing house chores, attending appointments, planning his care and treatments and micromanaging to ensure his evenings are calm with the right sensory input depending on how his day has been. I rely heavily on his school communicating anything that could be a trigger for challenging behaviour.
Having a child with neurodiverse conditions has so many challenges. I think there’s a lot of people who think being a carer for your child is “just parenting”. They don’t see the ups and downs, the sleepless nights, the incontinence issues, the vast amounts of appointments and the emotional toll it can take, especially when the child has challenging behaviours and they don’t fit into the neurotypical world around them. The punches and slaps hurt, the bruises are visible but we hide them and the tears are real even though no one ever sees them.