This is my brother, Connor. He was born on October 20th, 1992, when I was aged 4. From early on in my brother’s life my parents knew that something was wrong. Connor wouldn’t give them eye contact and he would hardly ever cry. At first the thought was that he could be deaf, but that was soon ruled out.
At 5 years old, Connor was diagnosed with aspergers syndrome (a form of autism), which would eventually go on to become full blown autism and severe learning difficulties.
I love my brother, as my parents do, more than is imaginable, but growing up with him could be a complete nightmare at times. Autism is difficult to fully understand and I don’t believe anyone can really know what it is unless they’ve known someone who suffers from it.
My brother would repeat the same phrases over and over again, and get distressed when no one replied. He’d often swear when we were out, earning dirty looks from passers by – happening so often that at one point we made a T-shirt for him saying “I’m autistic!” just so that maybe people could begin to understand and not glare at us like he was simply a naughty child.
From age 10 onwards, Connor’s behaviour began to improve immensely but before then life could be extremely hard for us all. A tall, well-built escort called ‘Melvin’ would have to accompany my family in the journey to drop me off at school for fear that my brother would hit and distract my mother while she was driving. He also went through a ‘plate-smashing’ phase where on one day, 3 of us (all women) had to try and hold him back with great difficulty, just so that he wouldn’t get into the kitchen and smash anything else! He could be prone to having major tantrums when we were out, wiping out whole displays in stores, earning us evil glares once again from those who just didn’t understand Connor’s disability.
Life for my whole family has been extremely hard with Connor, but we’ve always loved and protected him. From an early age (primary school) I would look out for my brother (who at that time was in the infants school next door). I remember one day in particular, 2 girls were pushing him around on the field and I marched straight up to them (at about 8 years old) and told them where the hell they could go. It wasn’t long before the staff could no longer handle Connor in a mainstream school and he moved on to a school for special needs that suited him much better.
I have always, and will always, love my brother, but I never had to deal with the immensity of struggle with him that my parents had to. I had friends, school, I wasn’t at home 100% of the time – I essentially could get away from the hassle of a home with an autistic family member. I will never, ever know where my parents get their strength. They have never wavered with looking after and loving my brother – only thinking of residential when times got extremely hard, but never going through with it. I wish I had the words to express what they put up with and how incredible they are, no one will ever inspire me more than they have and continue to do so.
On August 29th, 2010, my mum was diagnosed with breast cancer. She’d found a lump, been to the doctors and the hospital for checks and originally been told there was an 80% chance that it was nothing – God forbid it was an oestrogen-fed cancer in her left breast. Needless to say, I was the worst person that could’ve gone with her to hear the news. I absolutely burst into hysterical tears at the mention of the ‘C’ word, and I regret it to this day. I must have terrified her, I wish I’d been stronger. I won’t go into detail but she didn’t handle the news very well at all (as most people wouldn’t) and for a while the care of my brother was left with me and my dad.
My poor brother, a lover of routines being autistic – I just hope that he didn’t have to deal with the distress that we did. He could never understand about illness and death but I’m sure he knew that something was wrong, he’d just have no idea what. He daily asked for my mum – for the first time in his life she wasn’t around. Like I said, it was an extremely hard time for us all, especially my mother, and I hope she knows no matter what happened at that time, we love her, and know that we can’t understand fully what she went through because we didn’t have to cope with that terrible illness.
My dad was incredible. He had to sacrifice work just to make sure he was there for Connor. He’d make tea, do everything for us both and he never ever made me feel guilty for wanting to go out, or wanting to see my boyfriend. He tried as hard as he could to make life feel normal for us both and I know that he grew extremely close to my brother in that time.
Another thing about my brother, he’d never know the difference between night and day. If he fell asleep at 8 and woke at 11, he’d assume it was morning. Pretty sensible when you think about it, right? Without fail, my dad would take him out for a drive in his van, no matter what the time – 11pm, 2am – just because that’s what Connor wanted. I can’t express enough that my parents would have and did do everything for my brother, there’s nothing more they could’ve done to give him a wonderful life. I just wish I had been around more when I was younger.
My brother was 17 when my mum was diagnosed and I was 21. He’d grown into a wonderful human being, his behaviour had improved immensely, we were finally able to give him big hugs and kisses, and he was a pleasure to be around – winning best student at his school a number of times. As long as he had his Disney bag and his pictures (we would have to print him pictures of myself, my mum and dad for him to carry around at all times), he was happy.
One of my favourite times with him was Christmas 2009. Connor loved Christmas, more than anyone on this Earth, I truly believe. As a young boy, we’d have to make sure to be up with him otherwise he’d open all of our presents, not just his own! It was a stressful time when he was young, dealing with the tantrums he’d have if we couldn’t set up his toys correctly, but as he grew older he matured so much that he’d wait for me to come down and start opening my presents before he even touched his own. Anyway, it was Christmas Eve and we’d never really had chocolates on the tree before as he would just eat them immediately! But this year we were sat together and I said to him, “Connor, we’re not allowed to eat these until after Christmas, ok?” (of course, we both had one before putting them up) and he said “OK”, and he didn’t touch those chocolates.
On Wednesday 6th January, 2010, it had snowed immensely in our town – so much so that no one was able to drive anywhere, and whereas I’d normally have been at my boyfriend’s in Gloucester, I was snowed in so we all went for a lovely walk together in the snow to my nan’s house, 20 minutes away.
We all went to sleep that night without a care in the world, Connor banging on his wall, saying “Bad, naughty ..” (then we had to say dangerous) – these are the things we had to tell him it was when he used to playfully touch strangers in the street to get a reaction, and giggling away.
It was 2 weeks before my mother would have to have the mastectomy that would clear her of cancer, 2 weeks before maybe we could begin to move on with our lives.
It’s insane to have such a wonderful day like January 6th contrast with the horror of January 7th.
I remember every detail of that Thursday. I woke up after a full night of horrific dreams in a sweat and not long after I started to hear screams and shouts.
Connor usually woke up early but as we’d had such a long walk the previous day my parents had let him sleep in, finally checking on him at about 10 as he still hadn’t woken up. I will never be able to forget the way I felt that day, there are no words to describe it and there never will be. The gut-wrenching, mental and physical pain was unbearable and I couldn’t understand, I was clawing my face with my hands, just out of my mind, I just could not grasp anything at all.
My brother had passed away during the night (we were told later it would’ve been about 2am). Nothing could ever prepare any of us for what we saw that day and we’ll never be able to forget it, burnt into our memories forever.
They couldn’t tell us what had happened immediately and we waited for weeks to find out that Connor had died of ‘natural causes’ otherwise known as SADS (Sudden Arrhythmic Death Syndrome) – essentially the same thing as cot death for babies and small children. In detail, he’d had dilated cardiomyopathy (DCM), a condition in which the heart becomes weakened and enlarged, and it cannot pump blood efficiently.
There had been no signs that we’d seen (not that Connor could tell us anything we couldn’t see, being autistic) other than the occasional shortness of breath, that we’d just attributed to the long walks we often went on. Connor was 17 years old. 17, and he’d died in his sleep. We’d lived our lives looking after him, 24 hours a day, 7 days a week, and now he’d just gone. It was impossible.
It took a while for me to be able to sleep alone, and only in the past month have I been able to sleep with the light off. I probably should have taken counselling but a part of me just didn’t want to. It’s almost as if, as much as I feel sick at the horror of thinking about the terrible sights I saw from that day forward, I can’t heal them, because they were him, my brother. I remember feeling like I wanted to mourn forever because how could I not? How could I and why should I have to move on?
It’s been just over a year now since Connor passed and of course it never gets easier or less heart breaking, but it’s the first time I’ve been able to write this down and I feel like it’s something I need to do. So that people can try to understand Connor, his autism and the pain of losing him.
I want anyone out there who has ever had experiences anywhere close to mine, whether your life has been changed due to autism, or you’ve lost a sibling or someone you love, or you’ve had to deal with a family member or friend with a serious illness, to not hesitate in contacting me. One of my main reasons for writing this is so that those people can know that they are not and will never be alone, as much as it feels like that at first. There are others who’ve had to deal with terrible things and don’t be afraid to talk about them and to seek help, even if just from a friend or stranger who wants to help.
I wanted to outline the serious effect autism or any disability can have on everyone’s lives, and that it’s not just a passing problem or something that should be made fun of. I worried every day of my life that my brother would suffer bullying because of the way he was and I want anyone who feels like they need someone to talk to to know that I am here.
I never ask for re-blogs for my posts and I’m honoured if anyone does, but just consider it, so that if there’s anyone out there who wants to talk, they know that they’re not alone, and for the memory of my beautiful angel of a brother, who we miss every single day.
Kaye Huett
