I may have witnessed a small miracle. No waves have been parted, the face of Jesus has not appeared in my coffee cup and David Cameron has not announced measures that help the poor. But on a smaller scale, something remarkable has happened and I can scarcely believe it. I’m reluctant to write about it, for fear that I will be proven wrong. The curse of the commentator has struck before, most notably when I over-enthusiastically announced brilliant toilet training progress (oh how I rue those words now). So it is with slight hesitation that I share my monumental news. Cue drum roll…
My boy has settled down to sleep really well all week.
Okay, so it doesn’t look all that impressive now I’ve written it down. But let me explain.
The usual story with B is that bedtime is an exhausting and lengthy process of settling him, leaving him, going back in to settle him again, leaving etc. There is usually a great deal of foot banging, screaming, rearranging his room and general unsettled behaviour. He’s been known to move furniture against the door, making it really difficult to get in. Recently, he has worked out that by opening his door himself he can take a little tour of the upstairs floor, visiting his brother along the way (and ensuring we have two children not asleep). He’s also decided to show toilet independence that is not in evidence at any other time of the day; only when we think he’s settled down. For a while, beautiful silence will cascade down the stairs, only to be followed by a voice declaring, “I’ll squeeze a little out.” Occasionally he’ll throw something new into the mix. The picture to the left is of his (then) brand new bed that he decided to eat one night…
And all this is once you’ve escaped from his room. Prior to that you will have read his favourite book three times, told him a story, crossed the day off his calendar, found his favourite teddy, read his book again, tucked him in, fetched his other teddies, discussed capital cities of the world and had a quick re-read of his book for the road. At no point will you have deviated from the set pattern of this night-time ritual. It is a brave parent who dares to skip a stage, change things a little or forget a crucial little detail. The bedtime process will, by this stage, have taken up to 45 minutes. Not bad really, until you consider the possible two hours of crashing, banging and attempts to settle him that follow. One thing we’ve always done with our children is stick to clear routines at bedtime, but unfortunately this kind of carry on has become our routine.
Fortunately, when he’s settled, he’s settled. I’ve heard many stories of parents whose autistic children do not sleep well at all. Families who all live on next to no sleep. I cannot begin to imagine how difficult this makes life. If this is you, then you have my utmost respect, because I think what you do is verging on the superhuman.
Nonetheless, after having spent the day at work, the bedtime shenanigans can be tough. Which is why the sudden breakthrough has come as such a welcome, blessed relief. But it has not just happened. There is a tale behind why it has happened, and this is where the story gets really interesting. The reason it has happened is because, each night, we persuade him that he is a hotdog and squeeze sauce all over him. Confused? Let me explain…
Through our involvement with an occupational therapist, we have learnt about sensory processing disorders, and in particular, vestibular and proprioception senses and how they work (see The Seventh Sense). The OT recommended an excellent book called ‘Asperger Syndrome and Sensory Issues’, which explains these things in a way I can understand (no mean feat). It maps out ‘Incidents, Interpretations and Interventions’, or to put it another way: what your child is doing, why he’s doing it, and what to do about it. It describes proprioception as, “the system that allows us to sit down in a chair without looking and to know that we are pulling our shirt on correctly without watching ourselves in the mirror.” It helps us “right ourselves” in other words.
Following an observation of B at school and in a custom-built sensory room, the OT felt that an imbalance in this sense was evident in B. This makes sense (no pun intended). For example, quite often I will give B the thumbs up. He tries to return the gesture but almost always fails. Instead of his thumbs, his two index fingers pop up. He’ll look at them and physically adjust his digits until his thumbs are aloft. It’s a funny little quirk that I would otherwise have paid little attention to. But knowing about proprioception suddenly gives it an understandable context. I’ve also heard Autism Outreach talk about how many of the young people they work with experience the sensation of floating, as if they are not properly grounded. At school, the OT watched B lean on the person next to him as he ate dinner and identified it as a similar need to feel grounded.
Which led to the ‘hotdog’ experiment at bedtime. Here’s how it works: we roll B up tightly in a blanket or duvet, so that he is firmly wrapped up, like he’s been mummified. We tell him he’s a hotdog and that we are going to put sauce on the hotdog. We then get an inflated beach ball (the sauce) and roll it up and down his body, pressing firmly, but not so much as to hurt him. This goes on for about five minutes, during which time he, quite miraculously, becomes very calm and sedate. And then, when we’ve finished, he calmly goes to bed, where he stays with not a bit of trouble.
If this sounds utterly bizarre to you, you’re not on your own. My wife had tried it a couple of times before I saw it with my own eyes. At first, I was cynical. Perhaps it was the novelty of the first couple of occasions, perhaps it only worked for my wife. But now I’ve seen it with my own eyes, and it’s been more, much more, than a couple of nights. In fact, it pretty much works every night. We roll him into a hotdog, squeeze sauce on him, and he is totally settled. Amazing. To test the theory we’ve skipped a couple of hotdog evenings, and what do you know, we’ve been back in his room in minutes. The spell of hot weather has also tested the method, as B tries to settle down in a hot room, sometimes with windows and doors open. But he’s settled. I’m telling you, it works. It’s been an overnight success.
So there is our miracle. Of course, I’ve completely cursed it now and it will never happen again, but what the heck. Even if it doesn’t happen (like his poo in the toilet never happened again) and even if it was a fleeting flash in the pan (literally like his poo in the toilet), it is worth sharing. I have learnt a great deal about autism over the last 18 months, and one of the key things I’ve learnt is that looking for a cure is probably a waste of time. However, developments like this teach me that there is still a huge amount I don’t know, and that there are things out there that can make a huge difference, however long it lasts, to the life and well-being of my son.
I’ll sleep well knowing that.