Tuesday, 19 February 2013

My Sensational boys.

The other day, James was watching TV, and he sees something that looks like a kind of symbol. "Hey, look Dad, we've got one of those!!". Stephan had no idea what he was talking about so animatedly, so he asked James to show him. He took Stephan outside, and shows him a tiny stone with what looks like the symbol he saw on the TV. A tiny stone!!! (It was 2mm, Stephan has made me write). You see, James doesn't see the big stuff, he sees the detail. Detail is all around him. Add to that the noise that is louder than what you or I hear, he needs to focus on the TV, but all he can hear is the cicada outside, so he drowns out the noise by humming. Or making noises. They both do it; it's like a cacophony of sound! My boys have a constant need to move, they can't sit still for a second, asking them to sit still is an impossibility, unless it is on their terms. As I write they are sitting in their "W" position, orally regulating, making LEGO.

I don't want to bore you with jargon, if you want to know more there is heaps of literature out there, I know, I've read it. I still don't know if I get it, SPD, is very complex and subjective. My blog is NOT about literature and jargon, I might post some links to all you literature buffs out there, my guess is you won't read it, but I hope you read my blog.

Imagine a world that is loud, too loud and too bright. All day long you have been bombarded with so much detail, you have to somehow block it all out to make sense of it all. Imagine that everything is so loud and so bright,you've been dealing with it all day, and it is making you feel sick, and your heart is starting to beat faster. That noise so loud, you can't hear yourself think. Your teacher is asking you to sit still, at least that is what you THINK she said; you can't really hear her, you're trying, but that lawnmower right outside the window is so loud! There is a fly in the room, and it is taking all your energy to stop looking at it. The teacher looks cross.You know she wants you to do something, but what?!Your heart is beating faster, and all the kids in the room have moved from the mat now, Oh, but they are so loud!! All your nerve endings are on alert, someone touches you as they push past you and it feels like a knife has brushed against you.  Got to get out of here. Now. Teacher grabs you, she is yelling (everyone is always yelling, I'm not deaf, and your shouting is so loud it hurts!). You think she said for you to stop, but it's too late, you got to go. You run, fast, out of the noisy classroom, away from the yelling, past the noisy lawnmower. Oh no, some has got you!! You kick, scream, spit, ANYTHING to get them off me so that I can get away!

At James first school, he was put into time out for this behaviour. Again and again. He was labelled as naughty. So naughty in fact that, they were heading down the route of "disciplinary procedure". His teacher rang me at home to tell me that he was being naughty and could I please come and get him? What did he do, I ask? He spat, was the reply, I asked him to stop and he did it again. I went to school, and my James was terrified and he saw me and burst into tears, whilst hitting me. At 5 years old, he sat on his bed, crying, and telling me that he was a failure and that nothing was ever going to get any better.

Sensory Processing disorder. James gets as high as a kite, and there is nowhere for him to go but into meltdown. Nowadays, we are making sense of the chaos, and I think I can read him pretty well. I can prevent the hyperactivity, most of the time. And I have made it my mission to get inside his head!!  

The other day, we had new school uniforms, ready for the start of term. Ben, usually quite placid, seemed to be having a terrible morning. He forgot to brush his teeth, he is pushing James buttons which is not a wise plan at the best of times! On the way to school, I had to pull over twice to stop them killing each other! He is scratching everywhere, and is generally out of sorts. I wonder if maybe he is coming down with something? Even the usual cuddles are not cutting it this morning. "What is it Ben, can you use your words???" I ask him. "I just want my uniform off and I want to go HOME!!!", came the reply. Now, I have read about labels. I know that there are kids that even have to buy seamless socks because they can't bear the seams. We get to James classroom, and I cut out the label. He looks at me with these pools of big blue eyes, nearly with tears in them and watch as he very carefully, takes the label to the bin. Then he toddles off to his classroom without another word!!!  Touch sensitivity. For YEARS I struggled to get his hair cut. He HATED it. The other day, he was scratching his skin sore after his haircut, and raced to the shower when he got home. Afterwards, I asked him if that is why he hates having his hair cut. Yes, he says, it's because of the "Itchy, itchy".

Ben is the kid in school assembly with a chewy tube for oral regulation, and noise reducing headphones on, trying to get out the door. He only stays if I am there. He hates the singing, he says "it hurts my ears".

If he can't make noise to regulate his environment, he will chew everything in sight. If he can't make noise, or chew, he hides under the table. If he can't do that, he runs away.

James can be seen lying on his tummy on the teachers swivel chair racing around the classroom, to regulate, or make sense of, his environment. He NEEDS to run, climb, move if you want him to sit and do anything for any length of time. Equally, he needs pressure or proprioception to stop him getting hyper.  

Don't get me started on sleep! Asking a sensory seeker to lie down and try and sleep is like asking Ghandi to eat a pork chop. It's just not gonna happen. After YEARS of traumatic, late bedtimes, we have resorted to medication. Having our evenings back has been life changing. I LOVE having them in bed by 7.30pm, and I LOVE that getting them in bed and to sleep is not stressful anymore. If you are a parent reading this, I don't think that I'm being selfish, I just love having time in the evening. I love it. Did I say that enough?!

If you want to get to the nitty gritty of it, there are types of SPD. Ben is sensory defensive. James is a Sensory seeker. The sensory seekers are the kids that are the live wires, that actually SEEK sensory input to make his brain do what their body wants to do. The kids that NEVER stop and can't "calm down". I was the Mum at coffee group than ran after my little live wire whilst the other Mums sat and drank coffee and changed the occasional nappy. You know, nowadays, I can actually spot a sensory seeker by their mannerisms. They are just kind of erratic, and chaotic, and just, well, busy. All the goddamn time!        
Ben is literally on the defensive. Always trying to protect himself from the barrage of stuff that his brain has to make sense of. Occasionally, it gets to much. I get to school early so that he can go into an empty classroom, he struggles if he has to walk into a busy classroom and I will leave him crying. You can't MAKE Ben do anything. You can ask him and is is usually pretty compliant, but if he doesn't want to to it, nothing is gonna make him! We gave up on swimming lessons because he balked when they tried to make him put his head under the water. After 3 weeks of tantrums, we gave up, but determinedly carried on with swimming, with both of us in the water to make him feel safe.We didn't try and make him put his head under, but he did it in the end! Now he is a fish underwater but has not had a single lesson! 

So, I'm the Mum that is yelling in the mall, or outside school whilst my shouts of "STOP" go unheard. Spare my poor voicebox and my gorgeous Sensational Kids a thought. My sensational kids are not being naughty, they are just dealing with more stuff than you can ever imagine, in a world that doesn't understand them. They deserve A for effort every time. By default.

1 comment:

  1. You understand their perspective so well! I guess it has been a long road learning the insides of their minds.