Sunday, February 9, 2014
Sharing this post is very difficult because I want to be respectful to Caleb and yet be honest with what life looked like in our home for several years.
The night time battles began around the time Caleb was five years old. Up until that time we had had some difficulties with getting him to sleep, but nothing like what was to come.
We began to experience nights where Caleb would not fall asleep, all night long. This wouldn't just last one night, but two or three nights in a row. I would always make Caleb get up in the morning and go to school, even if he hadn't slept, believing that I needed to keep him in routine. The last thing I wanted was for him to sleep all day and then not need to sleep at night. Eventually Caleb's body would become completely exhausted, and he would sleep well for a couple of nights, but then the whole thing would begin again. Many challenges occurred because of this lack of sleeping.
Because Caleb was rolling around in his bed, he would continually need to be reconnected to his ventilator. In order to try to fix the problem, Bob or I would lie next to him and try to help calm him down. Caleb loved deep pressure, and so we would try to "snuggle" with him with the hopes of helping his body to rest. But even though we were snuggling, his body continued in constant motion. So we would hold him a little tighter. He didn't appreciate this, but we would tell him,"Once you lay still, we will let you go." This plan never worked! He would attempt to lay still, but his hand would keep moving or his foot would bounce up and down.
We always started these evenings out with such good intentions. I would think, tonight will be better. I would curl up next to Caleb and talk to him softly, but after an hour or more, I would start to get impatient and so would begin the snuggling. This would last for a half hour or so, and then I would begin the tighter snuggling (or restraining). After another half hour of Caleb struggling with me and me getting more and more frustrated, I would get up in disgust and say, "Forget it, just stay awake all night if that is what you want!” I would leave the room angry and impatient and then Bob would give it a try. Once we were both at a point of complete frustration or despair, we would head off to bed, lying there in defeat.
If we could have just remained in our room, we might have been able to eventually fall asleep and begin again the next day. The problem was, that on many nights when Caleb alarmed we would go down and find him, the bed and the walls all covered in poop. The feelings of anger and despair and complete exhaustion at these moments were overwhelming. At times we walked right back out of the room and left him sitting in the mess until we were able to calm down and re-enter with at least a bit of control. At other times, Bob or I would clean up the mess alone because the other one could not regain control.
I wish I could say that this happened for just a week or two, but this was our life for many years. I begged Caleb's doctors for something to help him sleep. I tried to express our desperate need, but Caleb was a child, and I was told over and over that children are not allowed to be given sleeping medicine. Caleb's neurologist eventually was willing to give us a psychotropic drug that was supposed to have the side effect of sleepiness. I couldn't believe that I was not allowed to give Caleb sleeping pills but I could give him one of these other powerful medicines. It sickened my heart to administer the psychotropic drug to Caleb, but we were desperate. Sadly, even with the medicine, Caleb would still stay awake until two or three every morning. This was certainly better than all night but was not what I had been hoping for. And yet, we felt we had no other options.
Miraculously, one night while I was at a Bible study, a friend shared with me about an over the counter supplement that was supposed to help people fall asleep. I left the study that night and went straight to the drugstore. We began giving Caleb the supplement that night, even though we knew we should wait and talk to the doctor. Amazingly, after taking the supplement, Caleb fell asleep within an hour and slept all night. I did call the doctor the next morning and received permission to use the supplement. We continue to use it to this day. Any time that Caleb is not asleep within an hour, Bob or I will ask the other,"Did you forget to give Caleb his medicine?" And almost always, the answer is, “Yes.”
I truly believe that Caleb's sleeping issues are due to the autism. I wish that I could say that this is no longer a problem for families with kids on the spectrum, but almost daily I read posts on Facebook about families living this exact scenario. My plea to everyone is, if a family is living through this, provide help. If you are a professional, take their cries of despair seriously. An exhausted parent, a child who won't sleep for months on end, and poop smeared walls can quickly become a volatile situation. And for families living through this, do not give up. Continue to seek help, and when you feel your anger rising, please walk away.
My heart breaks for every parent and child who is still living through this. My prayers go out to you that you will find help and have the strength and patience to make it through this phase of your child's development.