Sleep and disabled children and their families: continuing the conversation

Sleep disruption became part of life when my second daughter, Shelly, was born with cerebral palsy (CP). Unable to sit upright, Shelly was dependent in all her daily activities and was also unable to speak. I felt swamped by negative medical advice to put her in a home and resolved to join parents in similar positions to find solutions to our children’s care, development, and participation.

When I read Hulst et al.’s study¹ on sleep problems in children with CP and their parents, it brought back memories of those difficult early years. Shelly’s disability meant she sometimes became stuck in a position which restricted her breathing, causing her to choke or aspirate. She experienced tremors and often felt like someone was sitting on her chest. She would need to be held, sometimes for hours. Screaming or panic worsened her spasms. Fearful of sleep, she would resist lying down and fight being held, all the time becoming more and more exhausted. Unable to sleep alone at night, her older sister Kim shared her room until she was 13 years old and recalls getting up often at night to check on Shelly’s breathing. Vomiting, teeth grinding, screaming, and crying has left her with vivid nighttime memories of these years. The first 20 years were the toughest. Having two sisters at school rendered her especially vulnerable as colds and common childhood illnesses were much harder for her. Shelly also had epilepsy and struggled with reflux. We felt that monitoring her breathing at night was important, so even uninterrupted periods of sleep still necessitated regular checks on her.²

Even now, Shelly needs to lie on her side and is only comfortable and able to relax if she is supported in exactly the correct position. This took years of trial and error to find with mattresses, pillows, and positioners, often to no avail. A predictable routine and ‘just-right’ environment helped Shelly to feel safer. Kim recalls having to go to bed at the same time as Shelly every night, though she snuck out once Shelly was asleep. Sitting up with her at night became a way of life.

Friends had to slot in with our family’s sleep routines and evening meals often ended early to put Shelly to bed. Flagging energy sometimes led to arguments or interrupted family activities. Travel and holidays were impossible. My ongoing back and shoulder pain reminds me of the physical toll of years of night care. Employing full-time caregivers in Shelly’s adult years greatly improved our well-being but introduced new challenges. Shelly’s fear of choking and pain associated with inability to adjust positions demands high levels of caregiver trust and endless patience. Now, at almost 40 years old, and perhaps less frustrated by her body and life, Shelly sleeps longer hours but still needs turning four to five times nightly.

For many of the families of children with CP who experience sleep problems, chronic sleep deficiency can be damaging. We hear many stories from parents through our Shonaquip Social Enterprise Parent Champion program (https://www.shonaquip.co.za), which equips parents to form networks of support in their communities. When asked about sleep, one parent shared: ‘No one ever talked to me about sleep and how to cope. I just learned over the years what works for me, but sometimes I go to work feeling sleepy and tired’.

Families typically encounter many practitioners, each with a different knowledge base around sleep disorders. Despite recent advances in sleep research involving children with developmental delays, this knowledge is not uniformly integrated into practice. A practical tool to foster conversations around sleep with families will go a long way to increase understanding, help identify red flags earlier, and hopefully generate wider exploration of workable sleep solutions and support.