Parents struggle to cope with their neurodiverse children’s insomnia

Parents say they struggle with their lack of sleep as they try to establish bedtime routines for their neurodiverse children.
Chris Robins and Hannah Marie-Robins in Guernsey have revealed their experience looking after their nine-year-old daughter, Lily, who has autism and ADHD.
The couple wants to raise awareness of the hidden effect neurodiversity can have on families, adding that employers should be mindful of the impact neurodiversity can have on their children’s sleep schedule..
The couple say they only experience around three hours of sleep a night looking after Lily, who suffers from disturbed sleep despite medication.
Hannah says: “I can’t remember the last time we had a full night’s sleep, as in a proper night’s sleep.
“Even if my parents have her overnight to give us a break, we’re so used to being woken up that we wake up and it’s still a disturbed sleep. She slept better as a newborn.”
Chris and Hannah say their daughter’s insomnia has affected their physical health, adding they suffer from stress, migraines, and poor concentration which affects their day-to-day.
The pair explains: “There’s a greater understanding of the child themselves but is there an understanding of the impacts on the parents? I don’t know.
“I’m incredibly grateful that I get time off to get her to her appointments or I’ll text my boss and tell them I’ve had a rough night and I need to come in a bit later today and he understands but I don’t know if other companies will be so accepting of it.”
Every evening, Lily takes melatonin which helps her regulate sleep cycles and circadian rhythms.
Despite this, Lily says she still struggles with sleep and her nightmares have worsened.
Lily says: “I can’t lay on the side over to the way where my teddies are because I’m scared of looking over to the way where there’s a gap where my door is.
“I’m scared to even turn that way in case… it really just scares me.”
ITV News heard from other parents in Guernsey whose neurodiverse children struggle to sleep.
One mother says: “When a bad night arises, they hit like a freight train. Our sleep situation has affected our ability to work, our decisions about extending our family, [and] even our own relationship.
“You feel like a failure for letting it happen and being late to things because you’re so tired.”
Another explains: “I ended up leaving my old job. I needed to do less but my manager wanted me to do more. The only option was to do part-time, which I couldn’t afford to do.
“We could be in a much better financial position if we didn’t experience what we had.”
ITV News asked Lily whether she had a message for her mum and dad.
She responded: “Yes. I’m very sorry for doing this to you. I just wish this could stop, so you can get some sleep.”
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