Autism and Sleep

I have never heard of a child with autism that is consistently a good sleeper. Ashley is no exception. Actually all three of my children are terrible sleepers. They all three have ear problems that affect sleep. They also have allergies that impact sleep. Josh has restless leg syndrome. At one point when they were little, we would go days at a time where one of the kids was always awake. Sometimes it felt like they were conspiring against us. As they have gotten older, we have got the medical issues diagnosed, and sleep for Josh has improved greatly. He went from being up 8-12 times a night, to usually sleeping through, or just getting up one time in a night. Hailey can take care of herself, so her sleep doesn’t impact me anymore. But Ashley remains a huge problem in regards to sleep. So here is our typical night. We start getting her ready for bed between 8:30 – 9:00. The last thing we do is give her night time medication. Currently, it is Abilify 10 mg (mood stabilizer), Donnatal (for bladder spasms), Melatonin 10 mg (natural sleep hormone), and Lunesta 1 mg (sleep medication - This is new, and really not working, we are playing with dosage and timing, while praying for it to miraculously work.) Then she goes to the bathroom, and happily goes to her room. I ask her if she needs anything. She always wants a snack, drink, and music. I talk to her and/or read to her, and then I lock her in her room. She doesn’t mind being locked in, and if we don’t lock the door she just keeps coming out asking for stuff. She seems to like this boundary we have set. Then she swings and plays, until she falls asleep. This may take from 20 minutes to 6 hours, depending on the night. She is very loud, but usually happy. If she needs anything, she knocks loudly on the door, and we check on her. Our goal is for her to fall asleep first. That way we can do things like apply medication crème, cut nails, or anything else she may fight us on when she is awake. Also sometimes she falls asleep on her floor which is tile, so we want to move her to her bed, turn off her light, and unlock her door, so she can get out in the middle of the night if she needs to go to the bathroom. She can be really loud and a little out of control. She has often moved furniture, removed her mattress (sometimes blocking the door, which can be a challenge), broken furniture, spilled food, had accidents on the floor, etc. We have gone to a lot of trouble to stay one step ahead of her over the years. Our efforts have included bolting her bed to the wall, putting speakers and lights in her ceiling, adding a dimmer switch, removing all electrical outlets, and removing furniture. She really can’t hurt anything or herself in her room now. Sometimes she has to bang her head for a while before she goes asleep, it is painful to listen to, but can’t be prevented. She banged holes in her walls with her head. So we have repaired the damage, and covered the walls with boards to protect them. On the nights she goes to sleep before us; we might get a little break, if we aren’t too exhausted to enjoy it. On the nights we can’t wait her out, we get up all night long to check on her until she is asleep. Then she will wake up for the day any time starting from 1 A.M. If it is before 6 in the morning, we take her back to her room, make her go to the bathroom, give her a drink, snack, and music, and lock her back in her room. She is not quite as happy about this, but she tolerates it. Then I go back to bed, and try to get as much sleep as possible. We are repeatedly woken up for the rest of the night, and usually have to check on her at least 3 times. It is only slightly better than staying up with her. If we let her roam the house, she wakes everybody up asking for food and music. And at least she can’t hurt herself or anything else in the house in her room. Most times when we get up, we discover she has spilled food and drink, and/ or had an accident. It is not a great plan, but all we have for now. Right now her pattern has been to go to sleep about 10:00 and get up about 2:30 in the morning. Thus we are trying Lunesta. It is our first real sleep med, unless you count melatonin. We have tried 20 plus different behavior and calming medications. She has had reactions to all of them. Her sleep has been a problem her entire life. She never, ever naps. We go through brief times when it gets slightly better, but for the most part this is it. We are currently working on a plan for her to be able to be locked in our entire downstairs (where her bedroom is), so she can have access to a bathroom and small refrigerator. We are hoping she will be happier, and quieter. We are also hoping to have video monitoring of it in our room so it will be less disruptive to us and her to check on her. Sleep is one of our most significant problems. This is every night of our lives. We get a break when she goes to camp for a week in the summer (this summer will be the 2^nd time) or if one of us goes away, and the other stays home to watch her. Several years ago, we paid a sitter to come watch them for a couple of nights, just so we can get away and rest. We spend most of our lives exhausted, which is not helpful in dealing with the problems of the day. Like us on Facebook   Originally posted April 2012