By Kathleen O’Grady
Encouraging response from early participants of a Canada-wide study looking at the value of personalized online training for parents of neurodiverse children have researchers excited to recruit more families.
‘Neurodiverse’ refers to children with brain-based or neuro-developmental disabilities such as Autism, Epilepsy, Down Syndrome, Fetal Alcohol Spectrum Disorder (FASD), Global Developmental Delay and significant learning disorders.
The study offers a welcome helping hand for parents during the pandemic.
The destabilizing impact of COVID-19, with sudden lockdowns, restrictions and program and school closures, has forced parents to scramble and adapt. Many parents have suffered anxiety, overload and burnout.
Families affected by disability have been particularly hard hit.
“Parents Empowering Neurodiverse Kids” is led by Dr. Patrick McGrath at the IWK Health Centre and Dalhousie University in Halifax and Dr. Lucyna Lach from McGill University in Montreal and focuses on assessing an online parenting program. The program is designed to teach parents how to tackle challenging behaviours with a positive parenting approach to improve the quality of life for families affected by neurodevelopmental disabilities.
“Early feedback from participants and previous related studies show that providing parents with coaching skills may lighten their load and allow them to focus on the positive aspects of being parents,” says Dr. McGrath.
Dr. Sarah Tremblay, mother of a seven-year-old girl with cognitive disability says, “When I initially got involved with the program, I wasn’t sure what to expect. But from the very first week of implementing the simple strategies for connecting and communicating with my child, I saw some pretty amazing changes in her and myself.”
The study is in-process and continues to recruit participants. They are looking for families with children aged 3-14 diagnosed with a neurodevelopmental disorder whose children face challenges regulating their behaviour.
The online program occurs over an 11-month period. It is free of charge, requires a two-hour commitment each week, and is customized to each child. Participants are randomly assigned to different levels of involvement in the program.
The study includes 11 interactive skills sessions, covering topics such as: “Preparing your child for change,” “Working with caregivers at daycare or school” and “Creating a Calm Down Plan.” Participants may also benefit from parent-to-parent online support and disability resources.
Participant parents complete a one-hour questionnaire at three points during the study period, receiving a payment of $50 each time for a total of $150 for their time.
To ensure the study is responding to the needs of participants, a Parent Advisory Committee, consisting of 14 parents with neurodiverse children, is involved in all phases of the study.
“The program has a collaborative problem-solving approach,” says Barbara, the mother of an eight-year-old with autism. “It gives detailed step by step directions on how to approach problem solving for children with impaired language skills. I highly recommend it to all parents with neurodiverse children.”
To learn more about the study and determine if your family is a good fit for the program, visit: www.crfh.ca/neuro
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About Kathleen O’Grady
Kathleen O’Grady is a Research Associate at Concordia University and an advisor of the Parents Empowering Neurodiverse Kids project at the Strongest Families Institute.
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