There are times on this journey with autism that I ask myself the question: What haven’t I done for my son? Have I found enough people to help him? Am I spending enough time with him?
This is particularly the case when I or my husband are awake with him in the wee hours of the morning, watching a child’s brain on overload, unable to shut off and tell himself, ‘You’re supposed to be sleeping right now’. As I write this, it’s 5 a.m. Cash’an has been awake for at least an hour. Again.
I’ve often been told by other parents of autistic children, in a tone of casual acceptance, that sleep deprivation is a norm. The advice commonly suggested is to use a pharmacy over the counter sleep aid, or some prescription medicine to “take the edge off.” We’re exploring that.
I can remember waking up in the middle of the night with Cash’an since he was 2. I’d sit in his room way before dawn, watching him line up objects, tap spoons on the kitchen floor or turn on all the lights in the house (his brain says they are supposed to be on). This, just a few hours after I went to my bed at the ready, subconsciously waiting for him to wake up. I’m sure some mothers, overcome by exhaustion from this nightly routine, might have stayed in bed in anticipation that he would just get tired and go back to sleep. I do not judge or say they are wrong. My sense of responsibility, however, never allowed me to let my child to be awake unsupervised.
Now, years later, I would be remiss in not mentioning that Cash’an and I are often not the only ones awake in the middle of the night. My husband, Maurice, is often the one sitting up with our son at bedtime, only to find himself up again just hours later. Sometimes, our other two children wake up, just hours before it's time to get ready for school, to question why we are up. Lack of sleep affects my mood and how I communicate with them for the rest of the day. It’s often been said, a mother’s presence sets the tone of the home. My attention span gets limited and patience (one of my greatest strengths) grows shorter. Sleep deprivation may even affect how my husband and I communicate.
I feel particularly guilty when I know the family's added exhaustion is because of Cash’an. This subconscious guilt, I think, is common for many mothers. We need to understand we that did not cause this disorder, or any of the behaviors that come with it. It is not mine, nor my son's fault that he can't sleep. We do, however, need to set ground rules when he is awake. No TV. No snacks. No running around. No play time. I've learned that they come to expect it.
Cash’an can’t articulate his angst in not being able to sleep and doing other uncontrolled behaviors brought on by the rigidity of autism, but I see it in his sleepy eyes. It also affects his school activities and day, interrupting his ability to be focused on learning. Sometimes, he does drift back off. I do not. Instead, I write.
This was not my planned blog for this particular night. It was my attempt to find some sense of normalcy as I wondered how many mothers were awake dreaming of a good night's sleep.
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