He woke up five times the first night. Five times.
My sister and her husband had gone on a much-needed vacation and I was watching their three children – ages 9, 7 and 3. I had just graduated from high school. Joshua was the oldest of the three and had autism and intellectual disability. The absence of his parents, particularly his mom, made him anxious which led to his disrupted sleep.
I could barely function the next day. I remember turning on the TV, laying on the couch and watching multiple episodes of Barney with the three kids.
Joshua only woke up one time each of the subsequent nights, but I never really recovered from that first night of practically no sleep. I was exhausted.
It wasn’t until I was much older and had my own children that I reflected on this experience and recognized that Joshua was still waking up in the night at age nine. Age nine! I decided to start talking more openly to parents about sleep patterns of their children and was alarmed, but not that surprised, by how many parents of children with disabilities regularly dealt with sleep issues and how it affected their lives and relationships with each other. The emotional and physical fatigue was real and exhausting and sometimes debilitating.
What can be done?
- Communicate with other parents, special educators and medical professionals about sleep issues. Be open to learning about and trying methods or other medical alternatives to address persistent sleep issues.
- Access respite care options or extended family members for sleep support.
- Develop a sleep plan with your family.
- Be honest with yourself and your partner about your level of exhaustion.
- Give yourself permission to rest…even if it means letting your kids watch Barney all day.
“Rest and self-care are so important. When you take time to replenish your spirit, it allows you to serve others from the overflow. You cannot serve from an empty vessel.”– Eleanor Brownn
“In dealing with those who are undergoing great suffering, if you feel ‘burnout’ setting in, if you feel demoralized and exhausted, it is best, for the sake of everyone, to withdraw and restore yourself. The point is to have a long-term perspective.”– Dalai Lama