My number one heart-stopping moment of the week happened this Sunday. It beats the moment my son almost ran into the road a couple of weeks ago (looking back, I think he would have stopped in time, whether that woman had screamed at him or not). We had a house full of visiting relatives. In total there were ten people in the house (and one mad dog). Over the last couple of years we’ve shied away from entertaining, mostly as a result of having to adjust to the demanding changes in our lives (we simply couldn’t’ face playing the happy hosts). Recently, though, we’ve become a little more sociable, at least where our families are concerned.
The trouble with having a house full of people is that everyone thinks someone else is keeping an eye on the kids, or more specifically, keeping an eye on my autistic son. Thus it was that I found him balancing on his head. Not leaning upside down, but actual ‘look no hands! Or feet!’ head only balancing. On the top step of the stairs.
Seeing him perched there precariously, I demonstrated my usual calm response to a potentially life threatening, neck breaking scenario. “What the fuck are you doing?” I screamed, as I raced up to him and grabbed the nearest part of his body, which happened to be his foot. I lifted him and carried him by his foot to a safe part of the hall, muttering obscenities under my breath, and letting him know what I thought of this latest stunt (the words “idiot”, “nightmare” and “why me?” may have featured). I’m as cool as a cucumber in a crisis, me.
I’m not proud of the swearing. It’s not big and it’s not clever, but it was that sort of week. Let’s just put it down to a sudden rush of blood to both my son’s head and mine. Two days later, at my mother’s house, he repeated the stairs stunt, nearly giving her a heart attack in the process. I’d like to think her choice of language was sweeter than mine.
My son was standing on his head, at a great height, because he was sensory seeking. He is all about sensory seeking at the moment. After a week in which he rampaged through each day, leaving a trail of destruction (both literal and emotional) my wife, in desperation, started pulling books off our autism bookshelf. This is normally my domain only; I read about autism, my wife gets on with raising an autistic child. She stumbled upon ‘The Out of Sync Child’ by Carol Stock Kranowitz. This book is on my reading list, although I don’t think I have ever given it much of my time and attention. I should have done- it’s very good.
The book is not about autism per se, but ‘Sensory Processing Disorder’. SPD is a separate diagnosis, and can describe those who are overresponsive to senses, underresponsive, or are sensory seekers. It’s not as if we’re trying to collect syndromes or conditions for my son, but it does identify “that most people with autism have some degree of SPD.” Our child, it would appear, is a sensory seeker.
The book identifies some characteristics of the sensory seeker. These include: chewing on inedible objects, rubbing against walls and furniture, bumping into people, craving fast spinning and constant movement, fidgeting, getting into upside down positions, being a dare-devil, taking bold risks, running barefoot, touching everything.
B ticks all these boxes. It was like reading a page from my own diary to see his characteristics so accurately described. Of course, such lists fail to mention the exuberance and joyous energy that such a child brings. It’s not all bad.
My awareness of sensory needs developed during our consultations with an Occupational Therapist. I blogged at the time about what I’d learnt and some of the strategies we’d put in place (see Overnight Success). The therapist produced a report and put into place at school a ‘sensory diet’. I’ve been meaning for some time to share the ‘diet’ on a blog post, so this week seemed an appropriate opportunity to do so. Here is the information we received from the occupational therapist:
B’s Sensory Diet:
The sensory diet is a programme of activities designed to satisfy a child’s sensory needs and so allow them to function better with everyday tasks. B has poor proprioception (knowing where his muscles and joints are positioned) and so seeks movement (i.e. struggles to sit still, fidgets) which affects his ability to concentrate. By implementing the sensory diet, it should help B to remain focussed and better attend to task.
Allow B to have movement breaks every 15 minutes. These can include: a trip to the toilet, asking him to take the register and messages, being class helper, giving out books, worksheets and collecting things in, wiping the whiteboard. Provide B with a small fidget item such as theraputty to fiddle with if he becomes fidgety and loses concentration. Allow him to chew on an item or allow him to have a drink. On the way to assembly have B push and hold open doors for others. Prior to and at the end of P.E ask him to help move equipment, i.e. mats, benches. Look out for signs that B needs a break, i.e. when he starts to fidget excessively or lose his concentration.
If getting excitable or fidgety, try some calming exercises:
- chair push ups- sit on a chair with your feet on the floor and your bottom at the back of the seat. Place your hands on the seat and push down until your bottom lifts up. Repeat.
- Wall press ups- stand facing the wall with your hands on the wall at shoulder level. Lean towards the wall and push back. Repeat.
- Head pushes- sat down, place your hands on your head, link fingers, and push down on your head. Repeat.
- Play tug of war.
- Push a large heavy ball around an obstacle course.
- Lay a gym mat on top of B with his head out the top. The deep pressure should calm him.
Home routine: At dinner times B can be particularly fidgety and struggles to remain seated for the meal. Try the following:
- a weighted lap blanket
- make sure his feet are grounded- either on the floor or a box
- A cushion on the chairback may provide added proprioceptive feedback
- In school B leans up against his teaching assistant providing himself with proprioceptive input and so remains seated throughout his meal. This may be worth trying at home
B finds settling to sleep difficult. Deep pressure will be calming for B and should be applied following a relaxing and predictable bedtime routine. Here are some ideas:
- Hot dogs- roll B up in his duvet and slowly apply pressure through his body as ‘sauces’. Give B the control asking him what comes next and when to stop.
- Magic carpet ride- roll B up in a sheet or duvet and very very slowly drag him across the floor.
- Make a ‘den’ for B involving sofa cushions and a duvet in a compact space such as behind the sofa.
- Sitting in a large bean bag to watch tv can have a calming effect
- Try a backpack filled with heavy items, one with wide straps to distribute the weight can work well.
Something we’ve found is that the intensity of our son’s sensory needs and imbalance changes constantly. When it’s less intense, you notice it less. But just because the stimming has calmed down, doesn’t mean it won’t come back. As a result, a strategy you might have used, such as ‘hamburger bed-time’, might need to be reintroduced. At school, the sensory diet has not been followed, so Autism Outreach have referred B back to the occupational therapist in the hope it might kick-start the diet again. It feels like one step forward and two steps back sometimes.
I noticed this week that I have worn the skin down on my thumb. When I am agitated I scratch the skin on my thumb with my finger. It’s a habit that I don’t really realise I am doing and is a good indicator that I am feeling stressed or under pressure (which begs the question ‘how do I have any skin left on my thumb?’). Other people bite their nails. Some smoke. My child stims and spins and climbs and crashes. He puts things in his mouth (except for food) and he stands on his head. I guess it all comes from the same thing: the need to feel you are, as ’The Out of Sync Child’ puts it, ‘functioning smoothly’. The difference with B is that the need seems almost constant.
Balancing upside down seems to bring some equilibrium into my son’s world. We all need that. Rather appropriately, there are times when I’ve felt like my boy has turned my world upside down too. But then I remember: it’s not worse, just different. He’s just made me look at the world from a different angle. I have a new perspective on things. I think it’s a better perspective.