Sleeping With One Eye Open

There is a lot of talk about sleep, sleep deprivation, getting kids to sleep, sleep training etc. etc. when you become a new parent. We went through it with our son when he was born. We read articles about sleep training, I coped with getting up at all hours to nurse him, and caring for him during while profoundly tired from lack of sleep the night before, but despite all the challenges I knew there would be an end in sight. Children grow up, they mature and their sleep tends to become more regular. Bedtime can still be a battle and there might be the need for a potty visit, or to soothe a nightmare in the middle of the night, the occasional illness, but for the most part we can expect to start getting better sleep as our children get older.

But what if that lack of sleep doesn’t change? What if your sleep continues to be disrupted? How do those parents cope?

Special needs children, particularly those with medical fragility and complexity don’t sleep well. They often have medical conditions that have them monitored while they sleep, and night time alarms from their equipment are common. Night time can also be when symptoms seem to manifest – as is the case for our family – and you can spend entire nights, for several days and at regular intervals, trying to soothe your child and care for him/her.

My daughter didn’t sleep through the night without needing care until she was 3. Her disease causes episodes of acute illness, pain and discomfort, and she cried much of the day and much of the night. I learned to sleep in 30 minute to 1 hour bouts. I learned to sleep with her in my arms in her rocking chair. I think I even slept standing up when I needed to hold her in a certain position to comfort her.

I don’t know how I managed. I’m sorry that I can’t outline a solution in this post. I wish I had it. I rarely napped during the day because she needed care and I needed to get things done. I never caught up with my sleep. (I hear that takes years off of your life). In the early years, I had little support to get caught up on my rest and so I just managed.

There are supports out there and though it is hard to organize them or take advantage of them when you are in crisis, your sleep is what allows you to function and has to be a priority.

Respite care services can be made available, family (if they are in town), friends (just ask), trusted babysitters/mother’s helpers are all options to explore.

For more medically fragile children there are supports through the Community Care Access Center (CCAC), Special Services at Home funding (Ministry of Child and Youth Services), Assistance for Children with Severe Disabilities (ACSD) funding and other similar resources.

What is important is to recognize you need sleep, figure out how/when you can get it, and ask for help.

 

Julie Drury is on leave from the federal government to be at home with her 2 children, and to care for her 5 year old daughter who is a regular patient at CHEO.