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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With Love and dedication, anything is possible!

When the spinning gets out of control

I like to think I'm a good mom, at least I try. This week however,  I would have to say I am mediocre at best. The boys can get bored of the Sensory Diets in place so every now and then it needs tweaking. The boys have just been spinning out of control. Some days, they are literally spinning out of control, like spin tops, circling and bouncing off of walls and furniture until they fall.  I know this meant they were in need of some new sensory play but honestly, I've been so tired.  I get run down trying to keep up with it so I know I can't blame them. So what do I do for my reality check?

Most importantly, I ground myself. Just like my kids, sometimes I can feel like things are spinning out of control. Kids screaming, jumping, climbing or fighting will do that to you.  Unlike them, my spinning is only in the figurative sense. The best way I ground myself is to breathe. Allow myself to listen and feel each breath. That is honestly the best thing I can do. Once that is completed, I take a good luck at the boys and remind myself the kind of mom they need. Key word, NEED. Parenthood is a stressful job, put a child with special needs into that equation and it's doubly hard. Reminding myself that they need me helps me mentally realign.

Once I am in check, I start making the calls to the Occupational Therapists to get feedback and ideas for the kids. Now I know they haven't been getting enough sensory play but I also know they get bored of doing the same things so I am always looking or asking for new suggestions.  I could beat myself up on how I fail them by not always bringing my A game but what would be the point. They don't need a mom who wallows. They need a mom who gets it done.

Here are the latest suggestions for the boys sensory diets to help calm them down a bit and allow them to feel more grounded.Couldn't we all just be more grounded?

Proprioceptive Activities

When they receive enough sensory play, they are great listeners, attentive and super calm. Getting new suggestions benefits us all as a family.  I do whatever it takes to ensure that all three of my children grow up in a home that is loving and attentive to their needs but sometimes you just need a minute for yourself. It's a struggle and I may take a mental hiatus sometimes of what I need to do but it doesn't last. It can't, my kids need me to much.

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Spontaneous Responses

Dunkin' Donuts

This is the first week of school and I've had an early start, 5 a.m. in order to get my eldest son to school by 7:15. After dropping him off at school,  I stopped by my local Dunkin' Donuts to grab myself a quick cup of coffee.  Thank goodness for a drive thru. As we leave the drive-thru window, E says "bye-bye. ha a nice day" I looked over to him, his hand still waving and said "Hey E...stop blowing my mind!" He just smiled his perfect smile.

Now this may not seem like much to most folks. Cute perhaps to the average parent but for a mom with a child with autism who was completely nonverbal with little social emotional connection a year ago, this is ground breaking. He mostly echo's everything we say but has been gaining strides in speech. Today all I said was thank you at the drive thru. In my defense, I was a bit grumpy do to a cold. In any case, when he said what normally would be my response to the very lovely staff at my local D&D, I was over-joyed. It's not just that he said it and said it fairly clear,  I might add. But that he understood it was a moment that called for him to say that. I would have jumped in the back seat and kissed him if I wasn't already driving. Remember, I was going through the drive thru.

Well, I don't need to tell you that he turned my morning around and the rest of my day as well. I was so proud of E for showing me and the happy caffeine pushers that my boy can talk. It was awesome! He is showing signs that not only will he be able to speak more regularly but that he is understanding some of the social aspects or expectations of speaking. Pretty cool!

Here are some suggestions from another writer and Licensed Speech-Language Pathologist with ideas on how to encourage spontaneous speech with your child.

Top Five Ways to Encourage Spontaneous Language


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With Love and dedication, anything is possible!

First Day of Kindergarten

The first day of school! Ahhh! I was a nervous wreck.  The handmade sign was complete, the book bag was packed and lunch bag ready with a special little note from mama and a favorite treat. The note would be cute if he knew how to read it. I did it anyway, confident he would be able to sound it out and figure out the "I love you" note. I was ready but there was this lingering feeling of worry. 

The night before N started talking about school and how he was scared of the other kids making fun of him or not liking him. "Why do you think you are different?" I asked him. He responded. "Because I'm different. I'm not like other kids. "It had never occurred to me that he would be so self aware or self conscious enough to feel this way only at the age of 5. My response "N there is nothing wrong with different. Different is what makes us all so very special and if we were all the same the world would be a very boring place. You just remember to be a kind person and respect others. Just be you and the kids that are right for you will be your friend. You'll see." I mean what was I supposed to say to him? I was nervous more then ever now. Not just for the first day but for the entire school year.

Nickelodeon Giphy

So as a sign of solidarity,  the entire family gets in the car to take my sweet little baby boy to school. Dad, brother and sister wish him luck and I go in with him. As we go in I ask him if he is okay and he tells me "It's okay mama, I'm not nervous or scared anymore. I'm excited to go to kindergarten." I mean come on, where did my baby go? In an instant my sweet little baby boy was officially a big boy and brave as heck. There was no need to hand hold or coddle him, he had this and he wanted me to know it. Message received. 

After I dropped him off in class, I took a quick glance back to take a picture and walked as fast as I could to the car. Past the Vice Principal who wanted to chat with only a "Can't talk, I'm trying not to cry in front of everyone." She kindly said "Don't worry mom you got this. He's got this! We will take good care of him."  I shouted a quick "thanks" and cried when I arrived in the car. My first born, my baby was growing up so fast and I had to let him go. I pushed him right out of the nest and he took flight. I'm proud of him. We all are. 

Love you Nono.

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