Coping with no sleep PART 2

I have mentioned in the past about how lack of sleep was really getting to us. How we were seeking out solutions to try and help our three year old get to sleep and sleep through the night. If the lack of sleep was affecting the adults, we know it was having an effect on E too. Well I think we have found a solution that for the past 5 weeks has been working for majority of the nights.

Not to long ago, I read a medical journal on children with Autism and sleep disorders.  Here is the link to the article on Autism and sleep disorders that I shared recently on my Google+. E took about an hour or more to fall asleep so we started giving him melatonin. Which absolutely helped him get to sleep fast but he was waking up nightly at 1 pm and staying up until about 4 or 5 am. It was weighing on us all. We just couldn't get him back to sleep. We went from giving him 1mg, 3mg then 5 mg. After that, we stopped increasing because despite it being natural supplement, we didn't want to over medicate since he is only 3 years old.

In the article linked above, I read something that raised an alarm bell. "60% reported improved sleep, 13% continued to have sleep as a major problem, 1% had worsened sleep after initiating melatonin, and 1% could not determine the response."  He was falling asleep fast but  we did continue to have sleep issues. And in some days it was worse then ever. So I asked myself, could my son be the 1%? 

I resisted the article where it the talked about bedtime routines and sleep training, as well as listing some other items and tasks that can be taken to improve an ASD childs sleep (image to left).

The first thing we did was stop the melatonin and naps. We were stressed out at even the thought of this but we needed to try this. Parenting is work and looking for the easy way out isn't always an option. With a child with both ASD and SPD, we know we have to put in the extra time and effort for all our sakes. We make sure he has some sensory play shortly after dinner usually high impact like trampoline.  A warm shower and bath always seems to help after. We set an alarm so he knows that it is time to get out of bath. He responds well to that.

Then we get him ready for bed while constantly telling him it is bedtime. We let him wonder his room a bit, clean up and close closet and bedroom doors. Then he tucks in for a digital or storybook. He likes to snuggle on the floor on top of pillows we have spread out for him on the floor. This is were it gets tricky for us.  We have a car seat in room incase he is to wound up. We use it as an alternative for compression to calm his nerves. But when offered the alternative, he usually opts for laying down and getting a massage. When he says car seat, we know even he is aware of how out of control he is. The massage helps and a gentle vibration or rocking of his body.

Sleeper sack

In addition to pajamas, we place him in a zip up sleeper sack, zipper to back so he can't escape. This allows his legs limited mobility and his legs don't feel restless. Also, slows him down from moving about. They are inexpensive and we have one for summer and one for winter. He loved it as an infant so we thought we would try it again.

Compression seems to work for him as well. I made him a weighted blanket and he is not a fan. The alternative were these types of sheets that wrap the blanket and you can slip in like a letter in a envelope. I didn't want to buy one and it not work, so I made one with an old fleece blanket. Once he is asleep on the floor, we transfer him to his bed. Tuck him in making sure he is snug but night to tight. We want him to be able to move comfortable in his bed while still receive the compression he needs.

So did it work?

With all of these items and efforts, I can happily say E is sleeping through the night the majority of the time for the past month. He is definitely doing better with attention and seems over all happier, as are we. It's a lot of work and getting him to sleep is still the hardest part but it pays off. We start bedtime every night at 6:30 pm and he is usually asleep by 7-7:30 pm and doesn't wake up until 6 am the next morning. It's awesome. We are always so happy when he falls asleep with in an hour and that he has a successful nights sleep. Happy dance!!

This is our experience. Maybe you have tried this and had a different experience with your child. Every child with ASD is different, unique. Down the road these efforts may need to be tweaked a bit or may not work at all and we will have to find new ways to help him. Don't let the frustration and lack of sleep get to you as I felt it was getting to us. Your child is relying on you to help them figure things out.  Work with them. Observe what they like through out the day, recall what they use to prefer and see how it could be implemented in helping you get your child a better nights rest.

With Love and dedication, anything is possible!

Coping with no sleep

When you have a baby you expect some sleepless nights. After all,  you have to tend to their every need. As they get older, you sleep longer because they are kind enough to catch on to the idea that sleep is good. Some kids with Autism Spectrum Disorder (ASD) just don't sleep. I have one of them.

Little E hasn't been sleeping through the night for the past year. His first year was rough then he seemed to adjust year two. He could stay asleep but had difficulty getting to sleep initially. Now at three, he falls asleep fast; he just doesn't seem to be able to stay asleep. Getting him to sleep is the easy part now because he no longer takes naps so he is exhausted. He just can't seem to stay asleep even though we give him Melatonin. We tried a weighted blanket but he doesn't seem to like it. We do the brushing, that doesn't seem to help much either though he allows me to do it more often now.  I have given massages, scalp rubs, joint compression, impact sensory play and what ever ideas we come across. He keeps waking up. Often around the same time, 1 am and awake until about 4 am, unless he winds up not going to sleep at all. Tonight I swaddled him because I heard that sometimes doing this can help kids with A.S.D. sleep. I am hopeful that this will work like it did when he was an infant but only time will tell.

I am sure E isn't making any real decision here regarding his lack of sleep. He has absolutely zero control here. He seems so tired but still very awake. I use the word loopy to describe him. He wants to be comforted and calmed but physically can seem to be battling his mind and body. He knows when it's time to sleep. At times, he will tell me "mommy, tired."  Our kids almost always go to sleep at the same time between 6:30 -7 pm. When he wakes up at night, I often can get him back to sleep but he doesn't stay asleep, he will keep waking. Sometimes these attempts to get him to lay back down or calm down can take hours. He only likes to sleep on the floor. VERY hard on my back. We do it because we want to give him what he needs but I worry we are ruining his sleep process and creating bad habits.

The worst part of his not getting sleep is that during the day E is so hard to deal with. He's cranky, indecisive, super moody, self injurious, aggressive and often has trouble focusing by the afternoon. He becomes impossible to deal with.  His behavior is out of control and it is so hard to remain calm at times. Let's not even get into how we the parents are doing with our lack of sleep. It is clearly not an easy situation to deal with. I want to help him. I just don't have all the information to do so and that for me is frustrating.

Coping with no sleep isn't a solution, so I try to do what I do best. Research, learn, and implement. Finding answers any way we can.

Articles and links:

Sleep Problems in Autism Explained

Put Sleep Difficulties to Bed: Advice for Parents with Children with Autism

The relationship between sleep and behavior in autism spectrum disorder (ASD): a review

Just a few helpful articles that led me down the rabbit whole. Theses articles provided me with some new information to go to my sons medical providers raising new questions and seeking more answers. I share them in hopes they can do the same for anyone actually reading this.

Should you have any suggestions for us to try and implement, please share with us what you have tried and how it worked out for you.


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Thanks for following and have a blessed day.

With Love and dedication, anything is possible!