Now and again, when I look at a small period of my day, I wonder how much crazier my life can get. Living with two children with autism means my calm, happy house can explode into chaos within seconds. Sometimes there’s a clear reason and sometimes I have no idea what the hell just happened. Then there are the times that seem so ridiculous you have to look back and laugh. Last night was a perfect example
I was looking after both boys by myself, which usually means me being stretched to my limits. However, everything was going surprisingly well.
Jude came home from school at 4pm and didn’t have his usual meltdown within the first hour. Instead, he managed to eat most of his dinner, and we spent most of the next 2 hours playing together.
Tommy had spent the afternoon with his grandparents, and my mum dropped him home around 7 o’clock. I took them upstairs and started bath time. This is a prime opportunity for Tommy to take advantage of any moment he’s left alone, yet we managed to navigate it without any major incidents. Between the two of them they only managed to empty ¾ of the bath water onto the floor, and there were no tears, which makes it pretty successful in my book.
We made our way back downstairs, with both boys still very happy. My main mission for the next hour was to find ways to occupy Tommy, to keep him out of Jude’s way. Jude has very little patience when Tommy’s around at this time of night, and Tommy knows just how to wind him up. I needed to get through just 1 more hour until I could put Tommy to bed. This was later than usual, but at the moment Tommy is pushing his boundaries hard. As I was alone I had to make sure he would go to bed and not be getting back up again.
Somehow, everything I was doing was working like a dream.
It was easy.
I then decided to try and eat dinner before Tommy was in bed. It was around 8:30pm, and I was hungry. They were both so happy, so I went for it and sat down to eat. I knew this would help keep Jude occupied as he now loves exploring what’s on my plate. Tonight I had chicken and rice, so handfuls of rice were soon being scooped into Jude’s mouth and all over the floor.
I should have known better. I was being too confident. It was going too well
Halfway through I realised that Tommy was being really quiet. Tommy is anything but quiet. This can only mean he’s doing something he’s not supposed to.
I’d left him in the living room scanning through the pictures on my iPad, one of his new favourite pastimes. Every few minutes he’d let out a scream, or he’d come running to get me as he’d manage to click away from the photos and need me to help navigate his way back. But it had been a good 10 minutes since I last checked on him. I left my dinner on the table and went to investigate. This is where the chaos began.
As I entered the hall I was met by small brown chocolate like balls scattered across the floor. Only they weren’t chocolate, they were fresh out of Tommy’s nappy. This is a new fun game he likes to play whenever given the chance.
If there’s anything that can put you off finishing your dinner it’s the job of clearing sh*t up off the floor! Tommy had heard me coming and raced out to meet me. He knew what he had just done was wrong, he now wants to see what I’m going to do about it.
I think the natural reaction of most parents, when faced by a 4-year-old who has spread their sh*t all over the floor, would be to get angry. That’s the worst thing I can do right now. The success of my night is balancing on a knife’s edge, there’s no room for anger.
Not for the last time that evening I had to decide what to do first. I focus on the mess in the hall, there’s every chance Jude will come running out of the kitchen any second, and will run straight over it. So I leave Tommy for a minute, grab the wet wipes and begin clearing up.
I try to stay calm. Telling Tommy off will only lead to a meltdown, precisely what I’m trying to avoid right now. Instead as he watches me clearing up I try to talk to him about why it’s not nice to do what he just did. Even this is too much for him. He begins to scream at me. I can feel the atmosphere in the house slowly becoming a tinderbox.
I take him to the bathroom and begin to wash his hands, looking to see if there’s anywhere else he’s managed to get dirty. By this time, Jude has come running out to see what’s going on. I leave Tommy in the bathroom and go back to the hall to make sure there’s nothing I’ve missed. I rush back to Tommy, who has his hands down the toilet now, filling it with tissue. I start the hand washing over again, this time making sure we leave together and I shut the door.
Throughout this process I’ve not raised my voice once to Tommy.
I’ve even tried to make sure my body language doesn’t give away the frustration I’m feeling inside.
It doesn’t matter. He knows he’s done something wrong, it’s not the first time he’s done this. The crying and screaming increases, I cuddle him and sit on the sofa with him trying to calm him down. He’s grabbing at his teeth now, and chomping on his pyjama sleeve. I’m sure he has new ones trying to break through as he’s been chewing on things the last 2 nights. He’s not calming down, the tears are beginning to flow, and in the back of my mind is the worry he’s going to set Jude off. I decide to get him some medicine for his teeth, in the hope it will help him sleep better too when he finally does calm down.
Jude spots me getting the nurofen bottle out of the cupboard and follows me. As far as he’s concerned that bottle has the special strawberry liquid in that he likes so much, so he’s on my trail, trying to figure out why I haven’t offered it to him yet. He’s right behind me as I’m giving it to Tommy, which is when his patience runs out. Tommy is still crying, meaning there’s too much noise for his liking, and Tommy is being given the Strawberry liquid he likes, not him. He races out back into the kitchen, making those moans that mean a meltdown is imminent. The sound of him repeatedly slapping his face soon follows, and now I have 2 children with autism having a meltdown at the same time.
If a stranger were to wander upon this scene right now they’d probably think that this dad has no idea what he’s doing. These kids must be so spoilt to act like this. He needs Super Nanny to come and show him how to discipline his children.
But this isn’t about two spoilt kids. These are two kids with autism, both in the middle of a meltdown, and who are unable to communicate verbally. To an outsider, this may seem like all hell has broken loose, but this isn’t my first rodeo, so I’m not too freaked out….. yet.
To an outsider, this may seem like all hell has broken loose, but this isn’t my first rodeo, so I’m not too freaked out….. yet.
My main problem is I need to keep Tommy and Jude apart, but somehow be with both of them at the same time.
Usually, in this situation, my automatic reaction is to run to Jude. The sounds of him self-harming when you’re in another room really tugs at the heartstrings, making it near on impossible to focus on anything else. Then I have to battle with my guilt of knowing that I usually run to Jude, and although Tommy isn’t hurting himself right now, why should he always be the one to come second?
I try and distract Tommy by laying him on the sofa with one of his favourite cartoons, and run off to Jude. I run into the kitchen and tread through what seems like thousands of grains of rice. The other half of my dinner has somehow leapt off my plate onto the floor since I first left to see what Tommy was doing.
Did you know that when you walk through rice in your socks it really sticks and squashes in, almost like chewing gum? Just one of the many lessons autism has taught me this year.
I’m not sure if you’ve ever tried to sweep up a whole bag of rice, but it’s a nightmare. Somehow it just spreads throughout the house, sweeping it up feels like it takes forever. I have to sweep it, as I can’t use the hoover whilst the boys are in the house, the noise is too overwhelming for them. Right now cleaning it up is way down on the list of priorities, but it’s in the back of my mind.
So there’s Jude, hammering away at himself, slapping and punching himself over and over. He’s gone from being completely happy 5 minutes ago to full on meltdown. I’m trying to reason with him, but he’s past that point. Again I try to remain calm, pick him up off the floor whenever he bangs his knees and feet on the wood, and placing him back on the sofa. As he begins to slap the wall behind his head I place all of the cushions between him and the wall to try and soften his attempted blows. All the while I’m trying to reassure him that everything is ok, that I don’t understand why he is doing this, and I need him to show me what it is that’s wrong.
Tommy meanwhile is screaming louder and louder to get my attention. When Jude has a meltdown it seems to scare Tommy. I try to protect him from them as much as possible so that he doesn’t have to see what happens, but even the sounds can upset him. The problem is he reacts by screaming continuously, which only sets Jude off even more.
So now I’m stuck between the 2 of them. I know I need to get one of them to calm down first but every time I’m with one of them the other one only seems to get worse. So I alternate between the 2, each time squashing more and more rice into my feet as I run from room to room, spreading the mess further and further. 15 minutes later neither of them show any sign of calming down, they’re both beyond all reason. My inner calm has evaporated, I’m struggling to hold it together, but I know if I show any sign of anger or frustration it will only make both of them worse. I step away for a second, grab a cushion and bury my face into it letting out a primal scream for as long as I can.
The release of frustration helps. It gives me renewed strength, and I go back into Tommy. As if by magic five minutes later he starts to lower the volume of his screams, and then screaming less often. I return to Jude. He’s still angry, but he’s started to burn himself out. The intensity of his self-harming has forced him to slow down, he’s tiring, and the red mist begins to disperse.
Thirty minutes after it had all begun I’m carrying Tommy up to bed. As I come back down I find Jude happily trying to drink out of the nurofen bottle, which dad of the year has forgotten to put the lid back on in the midst of the chaos. The rest of the night passes without a hitch. Tommy stays fast asleep, and Jude acts as if nothing ever happened
Looking back at that 30 minutes in isolation, it is as far away from what I could have imagined being a parent to a 7-year-old and a 4-year-old would be like. When it all seems to be going wrong and they’re both so unhappy at the same time it’s easy for your mind to question everything that you’re doing. The
The guilt of favouring one over the other when they’re both having such a hard time.
The sadness that they’re both so upset and they sound like their whole world is crashing down around them. The anger that you have to deal with such a ridiculous situation in the first place!
The anger that you have to deal with such a ridiculous situation in the first place!
When it’s all over and you look at it again you have to find a way to laugh at what just happened. I mean we were having a perfect night, and that whole chain of events began because there was pooh thrown all over the house! Laughter enables you to handle a lot more than you think you can. Finding a way to stop judging yourself for what happened helps too. I know I did the best I could for them in that moment. That’s what means you’re able to get up the next day and do it all over again when it happens again.
Laughter enables you to handle a lot more than you think you can. Finding a way to stop judging yourself for what happened helps too. I know I did the best I could for them in that moment. That’s what means you’re able to get up the next day and do it all over again when it happens again.
That, plus trying to remember during the worst moments that the meltdowns will eventually end; they always do.