Friday, February 10, 2012

Sleep and Autizzz...

Having been up since 3:00 AM, Bianca could no longer fight off the Sandman.

Irregular sleep patterns are probably one of the most challenging things an autism parent faces. As we all know, things can be stressful when dealing with meltdowns or obsessive behavior that you are trying to curb. If your child is non-verbal and can’t express his/her need… that can be stressful too. None of that is helped by a lack of sleep.

If you are a parent to a newly diagnosed child on the spectrum, get ready. Sleep may be in short supply. It isn’t the case for every child, but many autistic kids need very little sleep. My daughter would at times sleep for three hours and then be up… as in for the day. Most autistic children need eyes on them at all times when they are awake. Many can be self-injurious, some just get in to stuff… like the toilet, the fridge, the dog bowl, their own diapers or even attempt to leave the house on their own. As the child becomes older, keeping them safe from themselves becomes a greater challenge. We now have to double up baby gates to keep Bianca in a room, but Bianca is smart… and strong. She has never had an issue with problem solving, so she knows she can shake the baby gate off with enough force and she knows she can use chairs to get over things that are in her way. With all of these concerns in mind, at least the paranoia keeps me awake when she is up and at ‘em at 3AM.

For us, we had to battle the sleep issue on multiple fronts. First off, we had a co-sleeper for Bianca when she was a baby. Until she was about 15 months or so, we didn’t know that she was autistic. That is when she started to regress and we knew almost from the start that it was autism even though she didn’t receive her diagnosis until a few years later.

The co-sleeper was great, until we tried to break her of sleeping in our room. Routines and kids on the spectrum are pretty set in stone once they are developed. So to break her routine and develop a new one, we just bit the bullet and sat in her room with her until she fell asleep. To my surprise, the first night was about three hours of crying and screaming. The second night was about an hour. The third night was about 30 minutes. The fourth night it wasn’t a big deal at all. Not bad for what I was CERTAIN was going to be MONTHS of battling to keep Bianca in her room.

Now it took greater time to get her to “go to bed” on her own, or when told. For a while she would just end up passing out in the living room, and then we would move her. Now if I see her getting sleepy, I just ask her if she want to go “night night” and if she does, she grabs her blanket and heads upstairs on her own, lays in her bed and covers herself up. Sometimes she goes very willingly, and other times sh stomps her feet and voices her displeasure through the songs and words that she echoes when upset. Usually this is “Mary had a Little Lamb” or “Twinkle Twinkle Little Star”.

So we got her into her own room, but the war was far from over. Like most kids on the spectrum, Bianca needs almost no sleep. As I mentioned earlier, there are nights where Bianca wakes up after three hours of sleep and she is fresh as a daisy. Unfortunately, the timing for this made it so that she would usually wake up just as I was getting home from work. Rather than wake my wife up, I would stay up with Bianca. Some nights it was close to maddening. It was on one of those maddening nights that I made the “Fixing” Autism video. I started writing the cards while waiting up with her. The dark portion of the video was shot that same night in my living room at around 4:00 AM with Bianca on the other side of the room watching TV and playing.

Bianca asleep with her then, MUCH littler sister Sofie. Two angels.
 For me, it resulted in an unreal bout of insomnia. I would fear falling asleep or I would find myself fixating on the thought “What is the point of going to sleep now when you know that in an hour she will be awake. What if neither my wife nor I hear her? What if she tears the baby gate down? What if she manages to open up one of the baby proofed cabinets and gets into something serious? I would lay down and stare at the ceiling with a million fears and thoughts running through my head just waiting. It can drive you mad.

I don’t know if it is just maturity or some other factor, but slowly but surely she started sleeping longer stretches in her room on her own. It is to the point now, where I would say that she wakes up maybe once every week or two, and when she does, she is easy to re-direct back to bed, or she just needs a snack and then goes back to her room. Often she makes her own snack run and goes to the fridge, grabs a Lunchable, opens the corner with the candy bar in it, takes the candy bar back to her room and puts the Lunchable back in the fridge. I figured this out because when I would wake her up to go to school there would be candy bar wrappers in her bed.

When we were having trouble putting her down for the night, we tried Melatonin. That worked some times. Other times I felt that it did absolutely nothing. We were also prescribed Clonodine. I am pretty fearful of giving little kids medication. It is a personal thing. I just feel guilty and I am leery of pharmaceutical companies. We used to give it to Bianca on nights she did not seem like she would be bedding down, but if we did, then she would still be up at 1:00AM. What we do now is hold off on giving it to her until/if she wakes up in the middle of the night. Then she has it at 1:00 AM or so and it is out of her system by the time she goes to school. This has worked with great success on days in which we were facing sleeping issues.

So the issue isn’t completely solved yet, but it is certainly more manageable. My suggestion to parents dealing with this sort of issue is to communicate with your spouse/partner and assign days, Work as a team and be certain to share with the other person what you find is working and what isn’t so that you can compare notes. If you are a single parent, as if you didn’t have a tough enough time, this certainly isn’t going to help. Get your naps in where you can. You single parents are heroes.

Now if you will excuse me, I need a nap. :-)

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  1. Love this post's title. It caught my eye right away.
    When it came to my son's sleep schedule or lack thereof, I always thought there was something wrong with me as a parent. I would read all the standard advice books about bedtime rituals and various strategies, but implementing them showed no change. It wasn't until a few months ago (and I was up in the middle of the night with my son) that I found out that irregular sleep is a symptom of autism.

    Ironically, it took moving to break my son of his late-night habit where he stayed up until 12 am, 1 am and sometimes 2 am. However, I can rarely put my son straight to bed. He still falls asleep in the living room and then I move him. It makes me feel a little better to read about the similar challenges you have encountered.
    Thanks for sharing your stories, especially from a dad's perspective.

  2. My husband and I now have a two night on and two night off routine with our son. We have set up a bed in a quiet oart of the house for the "two nights off". It has truly saved our marriage and our sanity. I like who I am much better this way.