Something has been on my mind lately, sleep, or lack of. I see people making meme’s and quotes about their lack of sleep and autism mom’s laughing at them because they truly know the battle. I think I have a unique viewpoint on this one, you see I had 4 kids before I became an autism mom. When Zach was born I had a 4-year-old, a 5-year-old, a 12-year-old and a 15-year-old. So I was an experienced mom, and a tired one. However, I had no idea how hard being an autism mom was. I did know that the 4 and 5-year-olds had me well trained to sleepless nights. Who knew adding a baby who didn’t want to cuddle and would cry if you tried, one who only calmed in his swing (sometimes not even then) could make that tired so much more. Do you have any idea how hard it is to calm a baby who doesn’t like to be rocked, held, touched or even sang to?
He never slept. When he became a toddler he was happy to play by himself. He wasn’t my little shadow like his brothers but nothing prepared me for him wanting to bolt at every opportunity. Still he didn’t sleep, as he grew, and progressed, we would find him in the yard at night, out the front door when I went to the bathroom, if I didn’t drag him with me.
Most Moms don’t want the little ones with them in the bathroom. I didn’t dare take 5 minutes to pee without him. Even when he did sleep, I didn’t because I was afraid to fall too far asleep. Every little noise was a jolt of fear, was this the time he would defeat the locks, bypass the alarm and go out into the dark never to return?
Even when he did finally sleep, I didn’t because I was afraid to fall too far asleep. Every little noise was a jolt of fear, was this the time he would defeat the locks, bypass the alarm and go out into the dark never to return? He was so smart! It was frightening how quickly and easily he could overcome almost every lock. How quickly he could get past me and out the door. How lithely he could get past me and out the door. Years past the time when other parents were sleeping I was still listening for that alarm, the stomp of his feet heading out the door. (Thank goodness he was never quiet!). Eventually, you get used to being tired. You live on B12 and coffee.
People say “I don’t know how you do it!” You do what you have to there is no other option. If you are a parent you might remember that haze we all have, when your baby is sick, or has colic. The tired you find when your toddler has learned to get out of bed 8 million times a night. This lasts a week, or a month maybe even a year. However, autism mom tired, that lasts for years. For more than 10 years I can’t remember a single time I actually slept through the night. Not once. Even when hubby took over I would still wake for every little sound. Eventually, my toddler became a boy, he grew past the need to explore the entire world. Then I slept, mostly.
There are still nights I wake at the slightest noise, at least enough to make sure it isn’t him. Nights I stay awake wondering what is going to happen to him when I can’t be there. Nights where my mind worries about regression, will he suddenly regress and I will wake up and find him gone? These are my greatest fears.
So when an autism mom says, I am so tired, try to understand what that means. We truly know what tired is.