It’s just before 3am and LO has woken me up complaining he needs a cuddle from his dad. I pack him back off to bed unhappily (he has form) and then, wide awake now, I turn to check my phone. It’s in the boy’s room, by the MO’s bed. I had given it to him last night to listen to a mindfulness meditation in another attempt to try and calm his ever-increasingly bad behaviour down. As I look at the phone, I see an email from his teacher that arrived later in the night, after he had fallen asleep. We correspond regularly to try and keep on top of the issues that he has at school and at home. What I read, feels like the worst one yet; he spent another morning out of his yr 5 class and was with yr 3 instead. She is worried about how this is affecting him academically; I agree but equally I understand that this ‘low level’ behaviour has a ripple effect on other children’s learning and let’s face it, it’s downright wearing.
At home, we deal with the manipulation, the anger, the tantrums. Equally, there is humour, compassion and affection. I watch him flit from emotion to emotion like a butterfly, unable to land for long before being tempted elsewhere. Like a motor he is propelled by his thoughts and his ego, what can he do to impress next and if that fails, who can he mentally destroy? He somehow sets us all up, himself included; maybe a request to do something he knows he can’t do so that when he is declined, he over-reacts, a ready-made vent for his anger and emotions to pour out of; unrepressed steam from an engine. It’s like having a car that constantly overheats, you live in fear of being stuck in traffic on a hot day; eyes straining to see if there are tiny tell-tale wisps of steam creeping up from the radiator over the bonnet. A bottle of water lying in the passenger footwell, just waiting to refill the arid void but knowing that it’s always a bit too late. Everything is a bit too late.
I worry about his future. I worry about our future. How is he going to get through the teenage years? Will he get his school qualifications if he can’t even sit still during a class or is constantly moving to a different one? Will he get expelled? Will he make college? Will he hurt someone? Will he go to jail? What, to some, may seem extreme fears, for a mother who has watched, like a car crash, their child struggle with regulating their behaviour since they were two and a half, these fears seem real. He slips through the system like a piece of mercury. He hasn’t hurt himself or anyone else so CAMHS won’t touch him and he doesn’t ‘qualify’ for NHS help because he isn’t severe enough. Even friends and other parents of his school friends don’t completely understand what it is like to live with him because he is so highly functioning; so utterly charming and clever. Only those closest to us can see the cracks that show when he is denied. When his speech gets so bad that his voice becomes shrill as he forces his words to get out. I feel like inside this locked cocoon is this child desperate to break free of his shackles but unable to find the key. His wings are clipped.
We have strategies (which fail) and we have plans (which we hope won’t fail). I hope to get him on an intensive stammer course in London this Summer and I am waiting for another CAMHS referral to be refused but will push on regardless and we have other appointments in the pipeline, some NHS, some private.
In the meantime we shall continue to tell him we love him and we shall continue to ground him when he is mean. And until he can break out of his cocoon, I’ll continue trying to make his butterfly house the best it can be so that when he is ready, it is has all the nourishment he needs.