I am a mother of a child with a disability. My two closest friends are also mothers of children with disabilities. I am a member of several online support groups for parents who have children with disabilities. The one thing that we all have in common is sleep deprivation.
My daughter’s sleep habits have always been erratic. There is no way to predict whether she will sleep from one night to the next. Sometimes she can go up to three full days and not sleep at all. Not knowing if sleep would happen from day to day has been the only constant.
It is so hard being a mom of a child with a disability and being sleep deprived. Over the years, I have learned a few things that help me get some sleep.
First and foremost, learn to sleep anywhere. This includes beds, pallets, couches, or floors. Make sure you always have a lot of blankets and pillows on hand. Whenever I am at the store and there is a sale on bedding, I buy it!
We have spent many days and nights admitted to the hospital, so I even bought a portable sleeping mat. I stumbled upon one by accident in the sporting goods section of the store. I learned very quickly that the couch or chair you are to sleep on in your child’s hospital room is not friendly on my joints. I lay the mat on top of the hard surface and voila, instant bed!
Another very important tip is that you must sleep when your child sleeps. This involves learning to be flexible in your sleep habits. Learn to sleep day or night and be able to fall asleep quickly. The important goal is to get any sleep you can so that you can function when your child is awake and with you.
The habits that you used to consider unhealthy sleep habits become necessary sleep habits. If you are lucky enough to have a spouse or respite, then sometimes those precious alone times need to include sleep time.
Your self-care routine must include sleep. Trust me on this, moms need sleep to be the best mom they can be.
From the moment Camila was born, I knew she would change my world. But it was not until third grade when she made the comment “I don’t want to live anymore” that I realized things were not right.