So spider monkey lives life in extremes. Not particularly complicated ones. In fact, the best way to describe him and his influence over those around him is as a dichotomy. Here, I hand over to wikipedia for a definition;
“A dichotomy is any splitting of a whole into exactly two non-overlapping parts, meaning it is a procedure in which a whole is divided into two parts. It is a partition of a whole (or a set) into two parts (subsets) that are:
- jointly exhaustive: everything must belong to one part or the other, and
- mutually exclusive: nothing can belong simultaneously to both parts.
Such a partition is also frequently called a bipartition.
The two parts thus formed are complements. In logic, the partitions are opposites if there exists a proposition such that it holds over one and not the other.”
I realised the influence of this when I wrote The Economies of Scale. There I was, discussing life as two parts, not exactly equal in scale, but you could say black and white. Which is unusual because for a longtime, and still on a lot of days, life with a medical mystery is a very unsexy Fifty Shades of Grey. If you look too close, just like the days as a child where you got close enough to the TV screen, it’s a mess of pixels. Pixels that vibrate in front of you, and although there’s sound going on in the background, it’s very difficult to distinguish What’s Going On. Mix too many colours together in your paint palette and you get brown. Shitty brown. That’s why I’m taking a lesson from my child. Stand back Mum, and see things my way.
I remember pre children, reading an article by Sally Phillips about her first son Ollie, who also happens to have Down’s Syndrome. I can’t find the exact quote, but I do remember her describing him as living life as two extremes. He feels the highest highs and the lowest lows. Babies are digital in this way too. They cry. Or they don’t. And with Rufus having development delays, he’s still just as digital. He is jointly exhaustive and equally exhausting. He shows joy completely, wholly. It takes over him, he vibrates with delight. He squeals with peels of laughter. There is not a person around that can fail to be lifted when he is like this. He seems high, and takes everyone up with him.
But equally, if inexplicably something is not right, he is a mess. A whirling mass of arms and limbs and sheer frustration. A piercing scream. No, you cannot fix this. And why can’t you understand this Mummy? Cuddles won’t do, especially when you can’t buy protective padding. My jaw has been head butted, my chest walloped. I’ve cried at the pain. But what’s worse is when he turns on himself. Whatever’s hurting him, or bothering him draws him in on himself. It’s too early to say whether his behaviour is intentionally self injurious, but watching your child bang or repeatedly rub their head isn’t something you should have to see. He’ll get in such a state he’ll make himself sick. And I am helpless, lost. Trying and failing to not cry myself. Because he is non verbal, his communication is base. But that doesn’t make him mute. In these moments, sleepless and in pain for my child, the future seems bleak. I can handle him now, but he is growing, getting bigger. A digital two year old is a very different concept to a digital five year old. Ten year old. Teenager. Adult.
But as I say, that’s when I get lead down a dangerous path, one that looks like it’s going to lead to a further dichotomy. Case A, all will be normal. Case B, all will be abnormal. But the future isn’t written yet. The stone is yet to be cut. And Rufus’s current bipolarity isn’t fifty fifty. Right about now he’s positively seventy thirty. The list of things that delight him are seeming to grow, and he is pointedly letting us know what those things are. And there’s been a little sneaky change in our house. His ‘bad’ behaviour is becoming more directed. It’s a little change, but you can taste it in the air. It’s all about the eyes, a special new look for Mummy and Daddy D, one that is beginning to appreciate that we might understand a little. Almost as if trust is forming. The ‘professionals’ have seen it.
My boy smacked me, right in the chops. A bitch slap. And he was angry, not inconsolable, angry. And I said “good boy”. Because as he did it he looked at me, and I knew what he was saying. Non verbal, but those eyes, they told me everything. He was tired, that was enough physiotherapy. He knew he wanted to hit me, causer of this. He shared his world.