So Christmas has come and gone in a flash.
For most it’s been a time of fun, food, and presents. A chance to gather with friends and family, show them how much you love them, and celebrate. New, happy memories were created, captured, and remembered forever.
This year, I’m glad to be able to say, we’ve managed to have a pretty good time, but in the past we weren’t so fortunate.
For some, the last couple of weeks hasn’t been anything like what I describe above. A glance at the various autism Facebook groups I’m a part of is proof of that.
For those on the autism spectrum Christmas can severely disrupt their regular routine they feel so comfortable with. Rather than being a time of fun and laughter it can be full of stress and confusion, leading to a sensory overload.
For parents it can be a really emotional time. You see others enjoying a fun Christmas time, children happily opening presents and playing games, whilst your own Christmas is as far from that as you can imagine.
It’s customary at this time of year to reflect on what has been and look to the future. When I look back, all I can remember is what Christmas was like two years ago, what was probably one of the lowest points of our autism journey so far.
In the build-up to the big day we’d had a pretty rough month.
Jude had begun to self-harm more violently, more regularly, and more intensely than ever before. He seemed to spend about 75% of his waking hours upset, hurting himself more and more. Although he had been showing signs of this behaviour for a while, the escalation was something I wasn’t ready for.
He was sleeping for blocks of 2 hours, waking up hitting himself, crying over and over, and carrying on for another hour or two before he’d fall asleep again exhausted. This would then happen again 2 hours later.
In all he was sleeping on average 5-6 hours a day, going to sleep at around 1-2am every night. We felt lost. We didn’t know what to do. We were physically and mentally exhausted.
We went to the doctors 2 or 3 times that month, convinced there must be something seriously wrong that we were missing. He must be in pain and unable to tell us.
The doctors surgery was not a fun experience.
Sitting in the waiting room was impossible, so one of us would sit in the car with him whilst the other would sit and wait for his name to be called. As soon as we’d enter the doctors room a meltdown would begin. The doctor would try their best to examine Jude whilst we’d try and keep him as still as possible. He’d be screaming as if he was possessed, lashing out with arms and legs, scratching, pinching anything he could get hold of. I had no idea a 5 year-old could be so strong.
We were given a course of antibiotics, I think out of a mixture of pity, and as a way of getting us out of there. It did no good.
Jude did appear ill, but I think anyone would if they were sleeping such irregular hours and then beating the shit out of themselves for most of the day.
By the time Christmas came around I was running on empty.
The only time Jude seemed to be calm for more than 10 minutes was on a car journey listening to music, or being pushed around in his pram for a long walk. We did this as much as we could. An attempt to keep him happy, enable us to be a parent to our other son Tommy, and for our own sanity
Every night we were going for drives, 10 o’clock, midnight, even 3 in the morning, driving round and round in the hope he’d calm down and fall asleep so I could carry him up to bed.
It was frustrating, we had no idea why he was doing what he was doing. We were trying to do everything to make his life as stress-free and as easy as possible
It was tiring, apart from the lack of sleep, watching Jude go through this every day and night was mentally exhausting.
It was heart-breaking.
It was Christmas.
Wasn’t this supposed to be the most wonderful time of the year?
There should have been presents, parties, talk of Santa, just like every other family we knew was getting to enjoy. Instead, the whole December period felt like torture, not being able to do anything to calm him down and stop him feeling the need to hurt himself so much.
I was unable to enjoy the time at all, what was there to be happy about anyway?
I also felt a huge sense of guilt. This was supposed to be a fun time for Tommy and felt like I was neglecting him to be with Jude.
Somehow we got through Christmas day, but by Boxing Day I was on the edge of a breakdown.
I remember taking him for a drive again at about 1am.
We’d been driving for about 5 minutes, the music turned up to try and block out the crying that was coming from the back seat and the sound of him slapping his face. Jude then began slapping the window with the back of his hand over and over. When he was in this state a wild look would come across his eyes, it was as if we had lost him and there was this possessed child in his place.
I slammed the car to a halt at a crossroads
I’d been driving around some country lanes, so there were no cars around at that time of night.
I screamed as loud as I could for as long as I could, punching the steering wheel again and again. I couldn’t take any more.
My head was flooded with deep dark thoughts that I’d been fighting to keep out of my mind.
What sort of life was this for Jude?
What sort of life was this for any of us?
Wasn’t being a child supposed to be a happy time? Why couldn’t we make him happy?
What about Tommy? How can he be happy living in a house with this going on all of the time? How can we give him what he needs when Jude is dominating our lives like this?
I felt like a complete failure.
What sort of father was I?
My son felt the need to self-harm all of the time and I couldn’t figure out why. I didn’t have an answer to any of this, and everything I’d tried had failed.
My mind spiralled out of control…..
What if it’s me and I’m not good enough?
What if Jude had someone better to look after him, someone who knew how to help him, and keep him safe from harm?
What’s the point of living a life like this?
What if I just drove straight into that tree over there?
I felt sick. Had I really just thought about ending it?
I got out of the car for a minute and took some deep breaths. Jude, seemingly shocked out of his meltdown by my scream, had begun to tune into the music and was calming down.
I sat on the car bonnet and cried.
It wasn’t the first time I’d cried that month, and certainly wouldn’t be the last. I don’t know how long we stayed there. It could have been minutes, it could have been an hour. When you feel that numb time seems irrelevant.
We drove home and I carried him to bed asleep.
I got in bed next to him and cried again, as quietly as I could, petrified that I’d wake him up and we’d have to start the process all over again.
I felt completely lost. I didn’t know who to turn to. Nobody I knew seemed to understand, and if they did all they could do was be sorry about it and wish they could help in some way. The doctors were no use, and we were still waiting to be seen by specialists.
The only person who understood what I was going through was my wife but I didn’t want to burden her any further, after all she was just as upset, confused and in pain as I was. Much later she would tell me that she too had been driving out to the marshes, into the middle of nowhere, getting out of the car and just screaming. That release of frustration, where no-one else was around seemed to help her too.
Reflecting back on this time, even two years later still brings tears to my eyes. The admission that I actually thought ending my life, even for a split-second, was a feasible option, still makes me feel sick, cowardly even. But that’s how low a point I must have reached. I realise now that I was in a state of depression for at least a year or two, struggling to find a way to deal with the pressures life had thrown at me, not just with autism.
Combine that with the backdrop of Christmas, a time that for the previous 30 years had been full of fun and laughter, and my emotions were even more intense.
Fast-forward 2 years to today and this Christmas couldn’t have been more different.
We managed to spend some time together as a family, and both boys be happy. We managed to open a few presents, and the gifts were actually played with.
There were very few meltdowns, and when there were they were less intense and short in length.
Over time we’ve found strategies to help Jude cope with the stresses he feels, and a way of coping as a family, to try and ensure everyone gets what they need
It’s been a long road to get to this point, and things are far from perfect, but on this journey I’ve learnt so much along the way about my boys, about autism, and about myself, that has meant this has been our best Christmas yet.
There’s no secret.
There’s no magic solution.
There’s a lot of hard work, acceptance, and re-adjusting your perception of what it is that makes a happy Christmas, and what it is that makes a happy life.
So to all of you out there who have struggled this Christmas, just know you don’t have to struggle alone.
There are plenty of us out there who have been through what you’re going through and still are every day. I know I have learnt the most and gained strength from talking to others and developing a greater understanding of autism
Stay strong, never forget to look after yourself too, and find people to talk to.
Don’t be afraid, you’ll be surprised, there’s always someone willing to listen and help.