His Bus Pillow

Bed made with white bed linen. Four fluffy pil...

Image via Wikipedia

A while ago I wrote about the ongoing problems we’ve had with my son’s sleep (at the time, some of the core issues were regular wakings at 3am, and sleeping sideways on his bed). In the process of writing that post, I got thinking about what was causing the disturbance and odd habits, and how I might be able to address them. Eventually I decided he needed something to focus on during the night when he woke to break the habit of coming to our room; a new routine he could perform in his own room to replace the visit to our bedroom.

I bought him a bus pillow. I chose a bus pillow because he loves vehicles, and he loves squeezing pressure; hugging his bus pillow ticked the boxes. I sat him down and explained to him that instead of coming to mummy and daddy’s room when he wakes in the night, he should grab his bus pillow, squeeze it really tight, and go back to sleep. I repeated this tale to him many times, and showed him how to do it. I got him to repeat it for me, and reinforced his actions with praise and cuddles.

It worked.

But as with each solution to a problem caused by my son’s autism, unforeseen new obsessions or consequences arise in response. As his occupational therapist used to tell me: It’s two steps forward, one step back. You open up new doors in the mind, and somewhere another door blows shut.

Sure enough, the improved sleep patterns started unraveling again. This time he wanted to make sure that the bus pillow was facing the right way, and needed our help to assure this. The bus pillow must be upside down, with the bus doors facing him. Sometimes the bus pillow goes missing over the side of his bed, and he asks me to fetch it back. Two nights ago I got out of bed three times at his request, but none were specifically bus pillow related: One was needing a wee, another was he wanted his sheets to be straight, and the third was he’d fallen off the side of the bed (poor thing, but he was OK, just a tad shocked).

Even though none of those three events were specifically bus pillow related, each time that I returned him to bed I had to make sure the bus pillow was upside down and with doors facing him. (Not that easy to do in the dark might I add; he doesn’t want the light on but somehow knows his bus pillow is facing the wrong way, but needs help to correct it.)

We’ve had other sleep-time changes since that last post too. Of particular note, he now sleeps lengthways in his bed, with his head on a pillow instead of requiring two pillows to either side of his head. I take my successes where I can get them.

The sleep problems will continue, and change in type over time. But taking a step back I can see the strong trend of overall improvement: A child who sleeps under sheets; with season appropriate clothing; who doesn’t rub his head on the wall to the point of causing bald patches; who is able to sleep through the night at least sometimes; and who almost never wets the bed.

Sure, he likes his sheets straight, and his tissue box and two handkerchiefs beside him on the bed each night, and yes his room sounds somewhat unusual at night as his various clocks and watches fill the otherwise silence with endless tickings; but each night as he goes to bed hugging his upside-down bus, he has a smile across that perfect little face of his. And I remind myself:

Two steps forward, one step back, is still progress. And if he’s going to bed each night happy, then we must be progressing in a good direction.

Gallery | This entry was posted in Parenting an Autistic Child, Sleep and tagged , , , . Bookmark the permalink.

10 Responses to His Bus Pillow

  1. Holly says:

    Love your writing, and I can so relate. My son is 8 now and just potty trained through the night. I must admit, I had spent a fortune in stickers and toys and charts trying to make it happen. And with him it came down to a simple order. I realized that he was waking up in time to go to the bathroom, but that he was choosing to use the Pull-Up instead. I told him that we were going to break that habit, and it had to stop as soon as his last bag of Pull-Ups was gone. I told him if he didn’t, he would end up peeing in the bed and feeling wet (which he also doesn’t like). And I told him if he did that he would smell like pee at school.

    It worked (!!!) for about two weeks. Then, the wetting started again. THIS time I told him that if he started up again, he would have to wear the Pull-Up to school. He wasn’t happy at the thought, but he didn’t take me seriously. After yet another round of wet sheets and wet clothes changed in the middle of the night, I made him put on the Pull-Up before he went to school. Surprisingly, he was mortified. I couldn’t believe it. He was giving me the opportunity to teach two lessons at once.

    After he put the Pull-Up on, he cried and protested going to school that way. It broke my heart!!! I so wanted to let him off the hook. Everything in me wanted to hold him and cuddle him out of this situation. But I stood my ground. He asked me to please tell his teacher about his plight, because he said he couldn’t bear to. Here it was… the moment I could teach him what embarrassment was. He had mastered the simple emotions – happy, sad, scared. But embarrassment was a more complex concept that he hadn’t yet grasped. I explained that when I tell him that certain things will be “embarrassing” for a kid his age, i.e., coming back to the classroom with his pants around his ankles or kissing other boys on the face at school, THIS is what I meant. He got it!!! And I have since been able to use the memory of that feeling to explain which things are socially acceptable or not.

    I let him stew in the embarrassment of the Pull-Up for about an hour before school, and then, as he had his hand on the door knob to leave, I let him take it off. With great relief, he hugged me and told me that he would never wet the bed again. Well, the story had a happy ending – or two, as the case may be. Not only did he learn what I meant by the term “embarrassing,” he also quit wetting the bed. Completely.

    Well, sorry to ramble so long. It’s just so nice to “talk” to another parent who knows how it is. Thanks for your blog.

    • And thank you for sharing your story too! You told that beautifully by the way, maybe you should do a blog aswell if you don’t have one already? It sounds like you’ve got quite a bit of experience and insights that would be interesting to hear more of.

      • Holly says:

        Thank you. I’ve been urged by many friends to start a blog about autism and adoption. But it seems life always gets in the way! Maybe in the coming months I can find the time and resolve to do so.

        Also, with regard to sleeping, we have recently started Nathaniel on melatonin. It actually doesn’t seem to affect his sleep, but it does greatly calm his behavior. If you haven’t already tried it, I would be glad to give you more details. We are determined to avoid pharmaceutical medications if at all possible. (And, yes, I understand that some people need drugs for all kinds of conditions. And, no, I don’t think all medicines are evil.) Anyway, thus far, a natural approach has worked well for us.

      • Hi Holly,

        I’ve heard very positive things about melatonin before, and from my own reading it does look like a good and rather safe option. I hadn’t taken the extra step towards using it with our son, but I will bring it up at his next pediatrician appointment.

        If you do start a blog, please let me know, and I’ll add it to my personal blog roll and pop over for a look 🙂

  2. Nidreya says:

    Just a thought, autism is still a purely behavioural diagnosis (for now..)

    When we are asleep, are we still autistic? Surely autistic sleeping people are behaviourally identical to other sleeping people 😉

  3. Holly says:

    Autism has roots in neurological issues, even though it manifests mostly in areas of behavior. Structurally, autistic brains are generally different – usually having smaller frontal lobes than their neurotypical counterparts. Kids with autism also often have digestive and other disorders that argue against a purely behavioral issue. It is also widely known that people with autism have great trouble sleeping. And, since we can’t know what a person is thinking when he or she is dreaming, just because we may look the same on the outside when sleeping (just as we do during the daytime), it’s hard to say if autistic sleeping people are behaviorally identical to others.

    • I was going to reply but you’ve done a good job already.

      I would perhaps just add more generally that while autism is identified by behaviour, the behaviour is symptoms of a internal and pervasive difference within the child. That difference is within the brain, and the body more generally. The external behavioural symptoms express and bring our attention to those differences. The sleeping autistic child is still autistic.

      (I do suspect Nidreya largely meant it as a tongue-in-cheek comment, but it’s worth responding since not many people (people who might read the comment) don’t understand and have confusions about what autism actually is.)

  4. Holly says:

    Thank you. On so many levels, thank you.

  5. Rebecca says:

    I just recently started giving my son with pdd-nos melatonin. I swear by it for myself. I also am trying all other natural options before medications. Glutamine, vitamin b6, and magnesium are other things I plan on trying. Epsom salt baths too!

    We are gluten free, soy free and casein free. I will never go back.

    Good luck

Share your thoughts:

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s