Making sense

Like all parents, I want to be able to understand my child’s needs and make sense of what makes him tick. This has not always been easy with B. He has what one book I read describes as, “a logic all his own that perplexes or exasperates others because it is not representative of the norm.” Or to put it another way, he dances to the beat of a different drum! As time has passed I have learnt to understand many of his behaviours and characteristics by looking at them in terms of his autism. This is the great advantage of having the diagnosis- what was previously utterly perplexing can at least be looked at in a context where it (sort of) makes sense. In particular, I have found that learning about B’s sensory issues goes a long way to explaining who he is. I’m making sense of his senses, if you like.

We use our senses of touch, movement, smell, taste, vision, and hearing, combined with prior information, memories, and knowledge already stored in the brain to make sense of our world. As I understand it, many autistic children have difficulty in processing these senses. I have been reading a book called ‘Early Intervention Games’ (see Reading List) which identifies this as ‘Sensory Processing Disorder’ and says that, “When sensory input is not integrated or organized appropriately in the brain, children experience the world differently. Because they are not always able to process information received through the senses, they cannot easily adapt to a situation.”

The result is that the world can become what’s been described as a “Shrieking, blinding hurricane of sensory acid rain.” The book, ’When Your Child Has Aspergers Syndrome’ says, “Your child may vibrate at a different “frequency” than most others. That is, he may be described as “exquisitely sensitive.” Because of this, his entire nervous system-his senses and emotions- may be routinely impacted by stimulation others filter out naturally.” As a result, it is not uncommon for an asd child to have a desire to maintain order, peace and tranquillity. I guess they attempt to regulate their world.

I can apply many of the resulting behaviours to things I see in B. From a very early age he exhibited behaviours which we now look back on with a better understanding. My wife reminded me the other night of his tendency to bounce frantically on a knee, craving the intense movement and seeking the extra stimulation. At the time it was note worthy- now it seems like an obvious sensory response. Another habit he had from an early age, and still has now, is his need to touch moles (on a person’s skin, rather than the furry kind). The word need is quite appropriate here. when putting him to bed at night he absolutely could not sit unless he was touching the particular mole on your arm he preferred. He would become quite distressed if he could not have it and still does (though to a lesser extent). For a long time I had problems carrying him because I have a mole on the back of my neck that he would not leave alone (and would sometimes scratch and pinch). Feeling that you were unable to carry your own child in your arms was not a pleasant feeling.

B has other tactile habits like constantly having his hand down his nappy and pants, and chewing on all sorts of things (or if not, just putting them in his mouth). He also craves ice pops and will ask for them constantly throughout the day. Mind you, they can only be the red ones. Don’t even think about offering an alternative (is this to do with the taste or just a colour preference?). When he gets his teeth into one he literally gets his teeth into it, crunching away at the ice as every adult in the room cringes at the sight. He has always been very particular about the temperature of his food and will not eat anything he considers ‘too hot’, or what you and I would consider ‘barely luke warm’. A few nights ago I went downstairs to fetch him a beaker of warm milk. Knowing his absolute insistence on it being just right, my wife was careful to instruct me the exact number of seconds it should be in the microwave. I dutifully followed the instructions and brought to him the beaker of warm milk, whereupon he became very distressed and refused it. I had used the wrong beaker.

There are countless other traits and behaviours that, when considered collectively, are symptomatic of over-riding sensory issues. Probably at the top of the list would be his ‘human beatbox’ stimming noises. I wrote about this way before his diagnosis (read it here) and it still very much a major part of his behaviour. I’m no closer to understanding what triggers it and in fact have come to hardly notice it. This week we had a visit to the children’s hospital. We arrived and spent five minutes in the waiting area full of interesting toys and things to mess with, before being moved to a bland corridor for 45 minutes. he was very well-behaved indeed considering the unsuitable conditions. If it was a theme park they would issue fast passes and show an understanding of the autistic child’s difficulty in waiting. Not so at the NHS, it would seem. My wife commented later that he had probably been making the beatbox noise for ten to fifteen minutes before it even registered with her. I’m certain it registered with the other people sat in the corridor, but we don’t worry about them.

It surprised me, when reading up on this to find that ‘tuning out’ is a very common characteristic. B does this a lot and I often find myself handling it incorrectly. You call his name and there is no response. So you call it again, and still no response. At this point, I know what I should do, but instead find myself calling his name louder and more frequently, sometimes to the point where I am shouting. I don’t know why I do this- it makes no difference and I just wind myself up. Perhaps as a teacher I expect a response when I call someone’s name. It’s an example of one of the (many) ways in which I’m still learning to be the dad that B needs me to be.

It can be very difficult when everything has to be just right for your child. I think it is particularly difficult for my older son who, whilst being an absolute superstar of a big brother, is also frequently the one who triggers a bad reaction in B. He gets told off when really he’s just being a normal six year old. It’s asking a lot of him to make sense of something we struggle to make sense of ourselves.

The point to remember though, is that it is my son who is the person with the biggest difficulty in assimilating. We can decipher our world and cope with our surroundings. We take it for granted that we feel comfortable in our own skins and have a sense of control. In order to feel this way, B has to go about things a little differently.

It is not about making sense of my son, but helping him to make sense of his world.

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