The Bubbly One is only five years old and has suspected sleep apnoea which, along with his sensory issues, anxiety and hyperactivity, makes it hard for him to not only fall asleep, but also to get quality sleep once he's out. He had melatonin prescribed back in April (only a paediatrician can prescribe it for kids in Australia) as our first option and to get him to sleep it was awesome. The problem was that he would wake at 3am most nights (I don't consider it morning!) ready to start the day. He'd have plenty of energy from having some quality sleep and would have a great day at school. He'd get home at 3:30, or 5 on therapy days, and he'd be exhausted after keeping it together all day and would unleash until his melatonin kicked in at bedtime. Then the cycle would start again at 3am.
We'd looked at everything that could possibly be causing The Bubbly One's behaviour to increase so markedly. It was like his entire world was off balance and he was desperately trying to right it again but without success. We'd been behaviour charting since December and there was always something that could be throwing him out, but those things were becoming more and more minor as his behaviour became more and more erratic, and the sleep situation became more and more difficult. The Bubbly One has always been fairly adaptable but that was changing before our eyes, and as hard as it was to admit it, we were really struggling to cope with his hyperactivity and impulsiveness. We were doing everything his therapists suggested, yet nothing was working- and he wasn't happy.
Then for the first time we began to see some aggression from him- first at walls and doors and then at us. He would hit and kick (me in particular), and then would cry and kiss me to try to make it better. He's still small so he couldn't do any major damage to me, but he began to try to hit his baby brother, something he had always stopped himself from doing. He also has kids with severe physical disabilities in his class so I worried more when his teacher said that he had attempted to hit one of his peers. He was miserable already, but to see him so upset after he had lashed out was nearly as bad as the act itself. I conceded defeat at this point and called his paediatrician. He believed that the sleep issues were exacerbating all of the other behaviours and suggested the other option we'd discussed which was Catapres (Clonidine). He said that it should help with the sleep situation with the added bonus of it taking the edge off his anxiety and ADHD type of symptoms (he's undiagnosed but ticks all the boxes). Now, I have no issue with medication and have seen it change lives for the better. We are fortunate to live in a day and a place where science has given us an additional and very valuable tool in our arsenal to help our kids (and adults), but despite what my brain says on this one, I don't mind telling you that part of me still felt like I'd failed my son.
Before I had my kids (and until The Bubbly One started early intervention) I worked with adults with moderate to severe disabilities, most of whom fell somewhere on the autism spectrum. I LOVED it and I was good at it. That work, and more importantly, the people that I worked with made a profound impact on my life. Those young men and women, and the people working with them, made me who I am today and prepared me for my son in so many ways that I never envisaged back then. But I also carry some "baggage" from that work. Most of it is positive and makes me a better parent and advocate for my child, but some things drive me to worry and fear for his future, more so than if I'd been new to autism when he came along. One of these is my tendency to jump ahead twenty years in my brain and see the "minor" things that my son is doing now happening when he is a big and strong man. I have worked with (and been very fond of) some big and strong autistic men in my time. Most were gentle giants when they felt valued and safe, and The Bubbly One makes me smile often when he does something to remind me of one of them. But some, to be quite honest, could be pretty scary when their world turned upside down and they hit meltdown.
The thing that I struggle with, is knowing that as a professional I was always able to help the people that I worked with, yet I've been at a loss with my boy. At work I was known for being calm (and patient!) in a crisis, and for being able to diffuse a potentially dangerous situation so that there would be a positive outcome. I led a team and educated others in understanding autism, in navigating each individual's sensory issues, in facilitating communication and in preventing and responding appropriately to challenging behaviour. I did this successfully with some of the most complex individuals I've ever known. So why do I struggle so much with my five year old, who I know and understand better than anyone else in the world?
In pondering this I've had to admit that I really didn't get just how draining life as the parent or carer of someone with a disability can be. I thought I did, but until I lived it, I didn't realise how unrelenting the stress is. I didn't understand just how hard it is to care for your other children, your spouse and your home, and still be consistent in giving your child the support that they need. I didn't understand the isolation of the anxiety that hits you with every new stage of your child's life. I didn't realise that the overwhelming love that you feel for your child magnifies every high and low that they, and you go through.
My son's life, his emotions, his experience of the world, is for the most part interpreted for others by me, and it has been gut wrenching to see him so unhappy and not know what was turning his world upside down, nor what I could do to make things easier for him. It was terrifying to give him a medication, even when his paediatrician (whom I trust) said that it was safe, to wait and watch for possible side effects and to feel like I was pinning my hopes for my son on something that might make things worse for him. I watch him still, but I am starting to breathe again.
After one week he has stopped lashing out. He is sleeping peacefully- he still wakes for a reassuring cuddle at 2am but instead of thrashing around on his bed in frustration because he cannot stop moving he quickly drifts back to sleep. He is still a bundle of energy and noise, with a "witching hour" at 5pm, but he is focused at school and he is learning- and he is trying to carry over what he learns at home rather than switching off when he gets home because he is exhausted. He is trying to follow instructions and using some words to talk to us because he can concentrate and is not overwhelmed with frustration. He still lives in a sensory world, but when he seeks, it is for enjoyment, not to cope with a grievous wrong that no one understands. In short, he is happy, and I am enjoying my little boy again.
