So I’m learning that the littlest (now seven!) rascal is a sensory seeker. I get this, mostly. But I find it a complicated task to piece together the bits of information you get from physios, occupational therapists, speech therapists, consultants and of course Pinterest!
I learned a long time ago from a lovely physio that the rascal has difficulties with his proprioception which I understood to mean that he doesn’t automatically know where his body (or a part of it) is in relation to anything. He can learn to judge how far a way a cup is, the force needed to pick it up and the distance to bring it to his mouth, but it’s not the seamless process that people typically experience. This has always made sense to me, for our boy. He can’t walk across a carpet of children sitting with their legs out- he just can’t judge where to put his feet to avoid others. He struggles with writing and getting the pencil to move against the paper with the right pressure.
But there are so many other terms and discussions, it can be hard to see where something is the same issue but with a different or more sophisticated name and where something is a completely different, co-existing condition. For example, I describe him as hugely dyspraxic. This relates to the proprioceptive difficulties, but is it the same thing? He has problems with motor planning, that’s clearly the same in some ways. Although I can see the connections I still separate them in my mind, I think, so my best motor planning example is getting out of the car. I say to him, “come on now, out you get” and if he’s not focussed he dawdles and ultimately has a meltdown and won’t move. When I started to watch his behaviour more closely I could see that it isn’t obvious to him that his legs need to come out first, to support his body and then the rest of him can follow. He looks at the situation and knows he wants to be out of the car but feels frightened when he leans his head out first and recognises that is not the way to do it. This is different from my proprioception examples, but still obviously connected. I think I find compartmentalising helps me to feel that I have tool kit of strategies that I can call upon to help in a given situation. Generally, I try to approach every situation by breaking down what the parts are and giving him small instructions, hoping to give him the confidence to act independently, but inevitably I don’t always succeed.
Anyway, my thoughts today have wandered to sensory seeking. I’ve always been confused by this. From the early days of the proprioception understanding I was given huge lists of things to try with the rascal. Some of which were deep sensory stimulation, rolling in sleeping bags etc. But I always felt we were treading a fine line between helping develop proprioceptive understanding and over-stimulation. I actually felt that most of his meltdowns were when he was over-stimulated and therefore I avoided some of this work. Over the years I’ve gradually realised that he does have these needs and that there are different types of sensory input, but honestly I still don’t fully get it. For example, as a general rule he is at his most calm and happy on the beach. I always feared the beach, thinking it would be too much (because so many other exciting activities are too much for him) but the last two summers we’ve spent as much time as we can there, because he is just so relaxed. I drive home, scratching my head, wondering how this busy day, in a different environment with wind and sun, grainy sand, long walks, cold sea (always in Wales!) and clingy clothes has led to the happy relaxed child in the back of my car?? A play in a muddy park with some similar sensations leads, more often than not, to trouble. I don’t have all the answers but I do feel positive that I’m noticing more patterns and can attempt to adapt our lives accordingly.
In a round about way, I’m rambling my way towards the thought of PDA. The role play element of PDA is a huge factor for us. There’s almost always a pretend trip or event on the horizon which the monkey is planning for and talking about incessantly. He might be planning moving house, or going on holiday. Usually the role play is extreme, we’re not going on holiday to Italy, we’re moving to Italy. or we’re not going to the beach for a day, we’re going for 8 months. Over Christmas and in the run up to the birthday I’ve noticed the role play is less pretending and more preparing for what’s going on in the season. So he’s role played waking up on Christmas morning a million times and opening presents and preparing the lunch; similarly for his birthday. This has sort of not left room for more fanciful pretend play. There’s so many angles to it, you could describe how that shows his anxiety about the events to come, which undoubtedly it does, to an extent, but mostly he really genuinely seems excited and wanting to live the moment over and over.
The morning after his birthday was a difficult one, he woke at 5.30, put on all the lights and was banging around, when I approached him he was beyond uncooperative and unreasonable, contradicting blatant facts and clearly distressed. We worked through it over the first few hours and he managed to communicate that he was upset it wasn’t his birthday anymore. Of course, we can all relate to this ‘low’ after the ‘high’ the day before, but it got me thinking that as well as the sensory seeking, he’s partly ‘thrill seeking’. It’s the adrenaline of the anticipation of events, real or pretend that he craves and that’s why they get ever more fanciful as he discusses them. I don’t know what I’ll do with this, but I feel it helps to gently piece the puzzle together and ultimately help him to understand his feelings and how to soothe his own agitations.