Fighting for Better Sleep and Brighter Days for Children Living with Neuro disabilities

In life’s predictable rhythms, the arrival of children often accompanies sleep deprivation. Yet, for families raising children with neurodisabilities, sleep problems take on a whole new magnitude, shaping the lives of both the children and their caregivers.

Meet George, an eight-year-old boy who is the cherished center of his mother Cassandra Dinkelman’s world. After a 13-year journey, George’s arrival filled Cassandra’s heart with joy, but his sleep patterns have been nothing short of exhausting. Sharing a bed with his mother and staying awake until late at night, George’s sleep challenges have become a part of their daily routine.

Cassandra describes the experience, saying, “You do get kind of used to it, I think, but it’s been hard too because there’s just him and I – there’s no one else.” George, who has Down syndrome like many children with neurodisabilities, faces an uphill battle when it comes to getting a good night’s sleep.

Unfortunately, George’s story is not unique. Approximately 80 percent of children with neurodisabilities, including those with genetic disorders, brain injuries, autism, and ADHD, struggle with sleep. Tau Fakavamoeanga, a mother of five, knows the toll that sleep deprivation takes on both parents and siblings. Since her daughter Jasira was born with a rare genetic condition, the family has survived on minimal sleep, often tag-teaming to put Jasira to sleep. The fatigue triggers seizures in Jasira and has a ripple effect on the entire family.

Recognizing the urgency of the situation, a three-phase study has been initiated to develop sleep guidelines for children living with neurodisabilities. The study involves surveying parents and developing a non-invasive sleep monitoring mat that gathers movement and sound data. Ultimately, a randomized controlled trial will evaluate different sleep interventions for chronic insomnia in these children, determining the most effective strategies.

Dr. Jasneek Chawla, a pediatric respiratory and sleep physician at Queensland Children’s Hospital and an Associate Professor at the University of Queensland, emphasizes the importance of addressing sleep difficulties in children with neurodisabilities. With nearly half a million Australian children affected by neurodisabilities, the impact on their quality of life and the well-being of their families cannot be ignored. The research team aims to develop national guidelines to assist healthcare professionals, including general practitioners, in managing sleep issues for these children.

Dr. Chawla shares some basic strategies that parents can implement to support their children’s sleep, such as establishing consistent bed and wake-up times, following a bedtime routine, and creating a sleep-friendly environment with appropriate light exposure. Cassandra Dinkelman has also found success using visual timetables and dolls to help George prepare for bedtime.

She encourages other families to seek medical advice if they have concerns about their child’s sleep, emphasizing that what may seem normal could be an underlying issue.

In the pursuit of improved sleep for children with neurodisabilities, this research offers hope and the potential for transformative change. By addressing sleep challenges, not only can the well-being of the children be enhanced, but the entire family’s quality of life can be significantly improved. Let us rally together to support these families on their journey toward restful nights and brighter tomorrows.