That was a difficult title to write, we’ve not had an official diagnosis yet for Lewis, it’s complicated.
I find myself saying that a lot at the moment, I also find that if you slow the word down com-pli-cat-ed and divert eye contact to a focal point somewhere in the distance, add a dreamy out of body gaze and it stops the conversation dead and you can move on!
Lewis appears to love his bed, even the addition of a radio alarm clock set to go off at an uncomfortable volume doesn’t seem to shift him. Then again, it is Tuesday, and that’s a school day.
Yesterday was ok, ironically Lewis was up and dressed without the need for me to enter his room. That ladies and gentlemen is called Sods Law because yesterday we had our first appointment with CAMHS (The Child and Adolescent Mental Health Service) and we had decided that it would have been unfair to expect Lewis to return to school after that. The meeting went ok, the words Anxiety Disorder, Oppositional Defiance Disorder (ODD) and traits of Autistic Spectrum Disorder (ASD) were banded around but nothing formally, not yet.
Today Lewis was going back to school and as he’d spent the whole of last week excluded for disruptive behaviour and because he presented a danger to himself, I anticipated today would be harder than ever. It was same-ole, same-ole; what do you want for breakfast, you can’t have nothing, come to the table please, come to the table now please … I’ve asked you 5 times now. Brush your teeth and then you can watch TV for a while before school, No! Teeth first please. Teeth! Now! 10mins before we need to put coats and shoes on, 5mins. Right! Coats and shoes please. Coats and shoes Lewis. Pick up your bag please Lewis. Your bag Lewis. Lewis, your bag, pick it up.
Not an unfamiliar routine to your every day household my no means, what separates this from the average kid who’d rather stay at home to watch TV or play Minecraft on the XBox are Lewis’ responses, the defiance, the anger, the cold stares, the negative and sometimes disturbing comments all indicating an inner turmoil.
Where did my cute lovable little Loopy-Lewi go with his cheeky grin and wonderfully deep dimples, is he still in there? Hop on my back Lewis, we’ll move onwards as one.
I digress. It’s midday, my body clock is automatically set to recognise the time, I anticipate ‘The Call’ who will it be today? Innnn One: Bethany has a reading of 23.4 and says she’s feeling sick, can you come and collect her? Innnn Two: Lewis has just broken another window, sworn at the teacher and is running in the school field barefooted can you come and collect him? 12:15 okay, lets be optimistic shall we, it’s not a given that the phone will ring, I’m sure my horoscope (if I believed such things) didn’t say ‘expect a call at midday from you-know-who’. Honestly, pull yourself together girl and stick the kettle on.
And Bully’s Special Prize: ‘Hi there, can you pick Lewis up please, we’ve done all we can to keep him in school today but I’m afraid he’s just thrown a chair and it’s hit the Teaching Assistant’ … we made it to 13:30, not bad, not bad at all! I jest but my heart feels the clamp tighten by a single 360 rotation of the screw. I wonder what will happen if that feeling continues, is it like squeezing a spot, will it simply pop followed by a sense of gratification, then peace?
We don’t talk about it walking home, what’s the point, been there, done that. I’ve tried every trick in the book to get him to talk about his feelings, those conversations seem like a long time ago now. We’re both tired, tired of the hurt, the upset, the disappointment. I take it back, we’re not tired, we’re exhausted. Nothing I say to him about his actions or behaviour can make him feel worse than he already does. He’s beating himself up inwardly. Every once in a while we get a glimpse of what’s going on in his head. It’s painful to hear; the devil and angel on his shoulders, the devil killed the angel, there are now two devils. The echoing voice, she sounds like a witch. We’d be better off without him, he should die and be reborn a better person – all his words not mine.
Home is safe, I don’t pressure him, I don’t have the energy for the battle. I watch people’s reactions to how I deal with each situation. I watch closely. I know they judge me, they don’t think I’m hard enough on him, where’s the discipline, try a more rigid routine. Be more like us and you too will be ‘normal’. I beat myself up constantly about where I went wrong, what could I have done differently, if only’s, but’s and maybe’s. I know the answer, it’s whether people are prepared to accept it or not.
There are two frogs (no they don’t walk into a bar!) and a hot pool of water gently heated naturally by a mountains steam. One frog is in the pool relaxing, the water ever so slowly starts to warm up, it becomes quite hot but just bearable. The other frog comes by and the frog in the pool invites him to join him, ‘It looks quite hot’ says the second frog, ‘no, no’ says the first ‘after a while you’ll get used to it’, the second frog jumps in and immediately jumps out again. ‘Are you mad? That’s unbearable, how can you stand it?’ ‘I’ve been in here so long I suppose I’ve grown used to it, I can’t remember what it was like when I first got in!’
In a laboratory setting, the first frog would eventually cook! In my version, the first frog should have got out but in real life I can’t step out of the water so I suppose I should ask the second frog to keep topping up the water with ice to keep the temperature stable. Know any good frogs around here?