Joey’s sleep patterns at night have never been good, he wakes up 1 or more times a night and has always ended up in bed between me and my husband using us as his our personal kicking boxing practice bags while he sleeps.
At a recent appointment at our local Down syndrome clinic, when the doctor asked about his sleep, I broke down in tears and explained our battle with Joey at night. He didn’t think Joey has sleep apnea since he had a negative sleep study done five years ago, he thought it was more Joey’s autism and behavioral issues pushing through. The doctor suggested we see the Behavioral Sleep Psychologist at CT Children’s Hospital in the Sleep Center. Up until that appointment, I had no idea such a specialist even existed! Thankfully the wait to see this new doctor was less than 1 month.
At our first appointment at the Sleep Center, I had no idea what to expect. The Behavioral Sleep Psychologist walked in, sat down and started asking questions, and BOOM, my exhausted emotions got the best of me and I started crying as I started explaining our nights with Joey.
Her first suggestion was that we try to start “sleep training” Joey. She feels he never left the “infant stage” of sleeping and that he still wakes up at night just like an infant does. She then started explaining how we’re going to train Joey. She wanted my husband and myself to take turns every other night sleeping in Joey’s room next to his bed and to lock ourselves with him in his room so he couldn’t wander around the house at night and end up in our bed. Every time he was to get up, we were to ignore him and see if he would put himself back to bed and only intervene if he was at risk of hurting himself or being stubborn and not going back to bed.
Of course, directly after the appointment, I went a sporting goods store and bought a cot to put in his room. That evening, I put a hook and latch on the boys’ bedroom door to lock us in at night and explained to Aiden that if he needs to go potty, just to wake us up to let him out at night, lol!
Night one was pretty much a disaster. I don’t think I slept more than 1 hour at a time. I didn’t realize how restless of a sleeper Joey truly was at night! He tosses and turns the entire night! When he got up for the first time around 1:30, boy was he mad when he couldn’t get out of his door! He started yelling and growling then flicked on the lights. I sat up and told him to shut the light off and get back in bed, which surprisingly he did ! It took me a few more times cuing him to go back to sleep but he did for like 30-45 minutes at a time until 6:30am when I finally gave up and unlocked the door.
The following week, I met again with the Behavioral Sleep Psychologist, and told her how restless he is at night and how Joey keeps ripping off his blankets in frustration. When she said, we need to find a way to keep him from ripping off his blanket and perhaps we should consider another sleep study. We both sat there and brainstormed regarding the blanket situation. Since he doesn’t have the fine/gross motor ability to put his blankets back on his bed, she suggested perhaps some sort of a handle on his comforter and warmer PJs at night to lessen the need for as many blankets.
After the appointment, I went to work where I sat at my desk and pulled up Pinterest on my computer and searched “Autism bedtime” and I found a link for Homemade Stretchy Sensory Sheets! I quickly showed my husband the link and he agreed it was worth a try! So off to Joann Fabrics I went where I bought several yards of “stretchy fabric” and things to make the handles for his comforter out of. A few nights later, one of my dear friends came over and helped me sew Joey’s new sheets. I also had the bright idea to use industrial strength Velcro and attach Joey’s comforter to his bed so he can’t pull it off his bed as easily!
As for the sleep study, it was a very long, hard night for Joey and myself. Lots of tears were shed by Joey as we struggled to get him hooked up to all the wires but thankfully the study came up negative so we’re not dealing with sleep apnea, it is a behavioral issue.
So far, we’re only a few days into his new sheets so I will be sure to keep everyone updated on our newest adventure/conquest to keep Joey in his own bed at night and eventually be able to sleep back in my own room at night. This is going to be a long process but I know will be worth it later on. Until then, I just need to keep on swimming…