tired.

One of the most challenging aspects of my experience as a special needs parent is sleep deprivation. It affects our entire family. I had no idea how debilitating it could be, nor was I aware of the negative health consequences of poor sleep patterns, until I was trying to figure out what the heck was wrong with me.

Sleep disorders are common in children with developmental disabilities. Ryder has struggled with sleep his entire life. We adhere to a strict bedtime routine and schedule to help him to get to sleep. We rarely keep him up past his bedtime, as it throws him off, and can lead to being overtired; neither of which are helpful when trying to get him settled. He takes Melatonin regularly to help him fall asleep. Before Melatonin, it sometimes took hours for him to settle. For years, Ryder would wake up at least twice a night. He would be panicked, out of sorts, and inconsolable. He would scream, and jump around his room on his knees. It would take anywhere between 10 and 60 minutes to get him settled again. There were nights he would settle down, but stay awake for hours. He rarely slept through an entire night.

Around the age of 7, Ryder’s night wakings went down to an average of one per night, and he started sleeping through the night more frequently. Today, his sleep is better than ever, but he continues to have regular sleep disturbances. When he does sleep through the night, he wakes daily around 5:00am. Sometimes I am able to get him back to sleep until a little bit later. While he usually wakes me up when he wakes during the night, we have no idea how often or how long Ryder is awake in his room at night, without us being aware.

I often wonder how these sleep disturbances have affected his development and his ability to function in daily living. I look at how these sleep patterns have impacted me, and assume that Ryder experiences many of the same things.

I am so tired. Tired to the point of exhaustion. Tired to the point that no good night’s sleep will help me. It’s a fatigue that goes right to the bones. I feel like it would take months of regular sleep to get back to the point of waking up and actually feeling good in the morning. I’m not just physically tired, but mentally exhausted too. It’s absolutely horrible to listen to your child scream and cry in the night and not know how to help him. Sometimes I can’t fall back asleep after Ryder wakes up because I’m so worried about him. I have memory loss, trouble concentrating, and poor balance. I struggle with irritability and have to ward off depression regularly. My immune system is shot, and when I get sick it takes me twice as long to get better than it should. Half the time I’m walking around in a fog. I’ve even had to get help resetting my hormone levels, after recognizing that my drowsiness was making it unsafe for me to drive.

I’m okay. I mean, I’m not feeling fantastic, but I’m getting by. I nap as often as I can, and use respite to catch up on sleep when I’ve really hit a wall. What really bothers me is the fact that I know that if these are the things I am experiencing, Ryder is too. Sleep deprivation in children and teens impacts growth hormone production; hormones which help build muscle mass, and repair cells and tissues. It’s hard enough for me, an adult, to control my emotions when I am so out of sorts, let alone a 9 year old kid. I wonder how sleep loss is affecting Ryder’s development. I know it affects his mood. He’s often pale, and clumsy, and has very little patience. He sometimes falls asleep at school.

To date, we have no answer as to why Ryder experiences these sleep disturbances, and we have no treatment for them. All we can do is keep plugging along. Throw a lack of sleep on to an already fairly high pile of challenges, and you start to feel a little defeated. It’s not easy to feel like you’re in a constant state of survival mode, but we’re doing it. We’re doing the best we can.

So, please, forgive me if I’m grouchy. Forgive me for being forgetful. Forgive me for being late or disorganized. Forgive me for not being up for your party, and forgive me if I don’t seem to care. I do. I’m just too tired to show it.