I have talked about Corrigan’s terrible sleeping patterns in many posts so I will not go into all of that again. His doctor believes that he has an undiagnosed sleep disorder but that until he is 3 years old we cannot do much in the way of testing. There are possible reasons that could be related to his Urea Cycle Disorder ( too much seratonin) or it could be totally unrelated. Regardless, he sleeps very little and we know that it cannot be very good for him.
He was having a good run here in the new house and I initially attributed that to the increased amount of exercise he was getting just by running through all of the rooms and up and down the stairs. Over time though, I am coming to believe that it was more of a mental exhaustion, perhaps the anxiety/excitement of his new surroundings that kind of kicked in his more “manic” behaviors, which caused him to crash hard (and nearly all night) for a few weeks.
It is the same reason that when we visit family he always makes a liar out of me and sleeps really well on the first night. It is not the physical exhaustion but more likely the mental fatigue that he experiences after so much new sensory input at new locations. Thankfully, it seems that he is able to overcome those sensory stimulations quickly so the manic awake behaviors, like running laps for an hour around a new room, ends fairly quickly.
Now that he is no longer revved up and has acclimated appropriately to his new home, his operating level is more even-keeled and he is making tremendous strides in all of his “awake” behavior and learning areas but has regressed to his old sleeping habits.
The last four nights have found Corrigan wide awake at 1:30-2:00 am again and unlike in the past, when he pulled these all-nighters and then crashed around 11am for a three hour nap, it is now closer to 3pm or later (!!) before he takes a nap and even then for only about 90 minutes.
He is handling it much better though. Prior to our move, that last hour before exhaustion won out, he was a terrible little monster prone to rage and tears but now he just goes about his days. He has been excelling in his therapies, playing well and often in longer blocks of time alone, and not really throwing too many tantrums anymore.
Last night he was awake before 2am and I let him play in his room for a bit while I tried to doze in the next room. Corrigan is learning that his voice is a powerful instrument (though not yet well-tuned!) and he spent the majority of that time testing out various squeals, yelps and screams. I watched him a bit on the video monitor, unable to sleep myself because of too much Mt. Dew, and noticed that he was playing and having fun but then would drop to the floor, or sit on his bed and kind of space out. Like he was tired, but just unable to really rest. Then the moment would pass and he would pop back up and start playing (loudly!) some more.
Around 3:30 am, I went in and thought that I would see if he would lay with me. As soon as I walked in the room he seemed to slump. Like he wanted me to scoop him up and put him in bed, he was just waiting on me to make the decision. When I first climbed into his bed he thought it was a game. He gave me his blankie and signed the word for it. He wiggled a bit and was still a little wound up. It only took a few minutes though before he settled down and scooted into the crook of my arm, pulling his blanket up over his head and becoming still.
I felt my eyes drooping and just as I was about to fall asleep he would shift and jolt me awake. I would pat his butt, or rub his leg and he would settle down again with his blanket and I would be fooled into thinking I could close my own eyes…he would roll again. Lather, rinse and repeat.
At one point, determined not to even attempt sleep for myself until I heard the boy snoring, I was staring at the shadowy fan blades as they went ’round and ’round. When I dared to shift my head to see if Corrigan were sleeping I found myself staring into his wide-open eyes. In the same position he had been in for quite some time, but wide awake and quiet.
Corrigan’s bedroom is slightly illuminated by the lights of the church directly across the street (I ordered room darkening curtains for his windows just tonight) so I could not see the color of his eyes but could clearly see that they were open and surprisingly, they looked sad. Tired and sad.
I reached over to rub his head and softly hummed a song. He slipped his own little hand out from under his blanket and put it on mine. He then started softly singing his own song, and then he quietly moved into another position and was quiet.
It went on forever. Not once, in all of the time that I was in his bed, did he fool around or try and get out of bed to play. Had I not gone in, no doubt he would have been up yelling and throwing toys but he seemed to want to be in his bed. He wanted to be asleep. It was so frustrating for me to watch him struggle. He moved positions though not as often as you might think. He seemed comfortable, not fidgety. He had his Mama and his blankie right there with him. His breathing was slow, his heart rate was steady, his skin temperature seemed normal-not too hot, nor cold-he couldn’t have been hungry after his night feed. I didn’t hear any tummy growling.
I tried not to fuss with him too much, though my instinct was to scratch his back or rub his head softly to make him sleepy. I spent a long time in uncomfortable positions myself, crammed against the ice cold wall of his bedroom, so that my own movements would not disturb him but no matter what either of us did he could not sleep.
There is not a clock in his room, so I did not really know how long I lay there until I was finally able to creep out of his room and back into my own bed. When I glanced at my alarm clock it was 6:30 am. When I left his room, I was not 100% sure if he were awake or not, but he had not moved in some time and was in a position that I could not see his eyes. I figured that even if I got up and he did too, he at least had a few hours of rest, if not sleep, so he could play and make some racket but Mama needed at least an hour of shut-eye.
We both woke at 8:30am.
I guess last night was the first time that I saw Corrigan’s struggle up close. I am convinced that Corrigan wanted to sleep when I was in his bed with him. He was simply unable to do so. His inclination, when unable to rest, must be to get up and move around but he seemed peaceful, and visibly relieved, to have me come in and rest with him a bit. It breaks my heart to think that maybe he doesn’t want to be so hyper and energetic but that those behaviors are something that control him, not something that he can control.
It definitely changes my behaviors as to how I will handle these late-night wake-fests in the future. Rather than enter his room frustrated and angry, speaking to him sternly and ordering him back to bed, not being gentle when I tuck him in for the fortieth try. I think that now I will be more understanding. He truly cannot sleep more than a few hours at a stretch most nights and no amount of admonishment is going to make him close his eyes and slip into dreamland. His sleeping is disordered. So is his Urea Cycle and I don’t give him grief about that.
We have tried everything (under a physician’s supervision) including massage, music therapy, melatonin, increased daily exercise, eliminating naps, changing bedtimes, established good routines, medicines to treat reflux and so many combinations of room temperatures and pajamas…but we are open to any advice.
Can you help Corrigan sleep?