I’m just going to make one thing clear before I begin. Three reasons why I can’t die isn’t a tale of superhuman strength or marvel hero invincibility (just in case you thought you were indeed reading the blog of super girl). It’s more the darkest fear of a mother whose child has severe autism. I have blogged before about how living with autism is both hard and magical and have been completely honest about the challenges and rewards of our Altered Life. But this fear, the certainty of a death I simply can’t face is often the unspoken one. Silently tucked away like your most treasured possession. Only it’s not a treasured possession. It’s a silent and invisible curse. Worrying about what will happen to my son after I die, and to the relationship between us, clings to my soul like a bad smell and rears its head when I least expect it. A constant reminder that the relationship I have with motherhood is a world apart from that of my friends. Even between my boys, my responsibilities differ more than I ever imagined or wanted them to. Here’s just three reasons why mums like me just can’t die.
No one knows my boy like I do
Me and harry
When Harry walks upstairs or bounces and flaps in the lounge while I make dinner in the kitchen he makes a very soft sort of snuffle. I can tell from the tone of that snuffle whether he is smiling or anxious. I know whether he is T minus 5 from a meltdown or whether he is tired.
I can tell from the way his bottom lip drops a teeny amount (others wouldn’t notice but I spot it early) that he is about to cry and so I am able to pull him to me and try to calm him before that autistic fog descends and he is temporarily lost to me.
I know when he is lying in bed if he is fast asleep or if he is lying with his eye open and his grin wide thinking of…well that’s anyone’s guess. He’s definitely not counting sheep and is more likely to be plotting the next days biscuit barrel raid but the point is that I don’t have to talk to my boy to know these and so many other things.
I just know.
I don’t know how I know but because I don’t know how I know, I can’t teach anyone else how to know. You know ? I can’t write a Harry manual to pass on to whoever will care for him when I’ve gone. There will be no snuffle interpreter, no facial recognition expert or sixth sense awareness. Yes there will be people who love him and look out for him. But there won’t ever be someone who knows my boy like I do. When I die, I take that with me. As much as I love that special bond I would give anything to be able to pass the baton on and leave him with it in my absence.
He’ll never stop needing me.
The vulnerability of an infant is heart warming and temporarily affirms your role as the protector. In time, as your child becomes an adult that vulnerability is replaced with experience, knowledge and a passion for the world which is unfolding before their eyes. They no longer need you in the same ways. It’s heart breaking but amazing at the same time. I know that one day, I will stop being the oracle and protector for Oliver as he turns to friends and girlfriends to advise him through his life. But that will never happen for Harry. I don’t know if he will ever form a true friendship and I genuinely doubt that he will ever have a loving relationship. Maybe that’s harsh and unfair but it’s also realistic and I have found that realism has served me much better than optimism on my journey at times. My eternal boy will always need his family. The people who understand him, love and protect him. My boy needs his mum but in truth, I need my boy so much more. The only thing that I fear in this world is what will happen to Harry when I have gone. So I simply can’t leave him.
He might forget me
Me and harry
This belief is rooted purely in fear rather than fact. When Harry was assessed for autism, his report showed that he had recognition for 3 adults. Me, his Dad and my Nan. My boys were my Nan’s world and she was with them almost every day. She adored them and they adored her. Even now, three years after she passed away, Oliver will still cry and tell me how much he misses her. Harry is oblivious. He can look at a photograph and not recognise her. I say her name and there is simply no reaction. It’s as if she never existed. That makes me so incredibly sad to think that the woman who made him her reason for clinging to her own life for as long as she did (93 is a grand old age) is now not even a memory. It also terrifies me that the same will happen to me. Will I become a distant memory in time of something that he was once obsessed with and made him laugh and smile before he moved on. Am I the vtech ball machine? (That thing drove me mad for every second of every day of 2 years. It’s redundant now) Of course I could be grossly underestimating my boy but one of the struggles of non verbal autism is that life is a guessing game. I have no way of knowing what Harry remembers or forgets. Only what he shows me. And he shows me that both the ball machine, and nan just don’t matter anymore. When I die, will I still matter? I honestly don’t know.
But here’s the thing. While I don’t ever want to die I’m not sure that I want to live forever either. To outlive my partner and our children. To watch technology ravage our world and the futuristic films we watch now become a reality. I talk as if it’s a possibility (that’s too much science fiction for you) but my point is, I don’t even know what I want. I’m just scared.
I’m terrified of leaving my eternal boy in a world which all to often judges at best and mocks at worst those who they don’t understand. The ones who are different. The loners and the vulnerable. I hear horrific stories of groups befriending adults like the one my son will become and subjecting them to awful things. I push them to the back of my mind and tell myself that things like that don’t happen to families like mine (doesn’t everyone say that before it’s their horror though?). For now, I live here… today. In the present, I focus on the beauty of my boy and our relationship. I work with his school to build his skills. I introduce him to the next generation when they see him and stare or point, unsure and sometimes afraid of the boy with one eye who jumps and flaps. I am using social media to introduce my boy to the world ~ to desensitise them to his differences. I am trying with all that I am to educate others on the power of seeing children like my Harry with their hearts and not just their eyes. If I can do that and know that I am leaving him with an army of people who love him and ‘get’ him (albeit not in the same way that I do) then maybe, just maybe, when the time comes it won’t be quite so hard to leave my boy.
Until then you’ll find me googling the elixir of life and bathing in formaldehyde.
Chat Soon
Charlie xx
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I can relate in many ways, and other ways. But I just want to tell you about my cousin, he’s 55 years old, deaf and blind and severely autistic. His mum was his life and she cared for him throughout her life. Because of his disabilities he never really grew up and was always childlike. He was always incontinent too. His love for his mum was obvious, he needed her so much. Then a couple of years ago she died suddenly. She was not quite 80 yrs old. Her son was taken to a care home and is visited by his siblings. They report that he is happy as he used to visit the care home for respite and he is familiar with the place. Of course he will grieve in his own way for his mother, but he’s okay. Sometimes it’s hard to think of it as a lifetime commitment but my auntie relished every moment and I think they both did really well. I’m now in my 50s and have a serious, progressive illness. I worry so much about leaving my children. My 29 yr old autistic son is dependent on me and I have three young children, the youngest is only 6! My 11 year old is also autistic with physical disabilities. Leaving them is my biggest worry but all I can do is the best I can while I am here and know that when I am gone they will be cared for. xx
Thank you so much Anne for taking the time to comment and sharing your family information. I call Harry my eternal boy as I know he will always be a child within his adult body so I totally understand your cousins mums fears, and yours too. Its so incredibly hard but its good to know that they carry on without us. I guess in some ways its easier that they dont feel the intense pain of grief like we do. To leave them and know they were struggling emotionally would be even harder. Sending you and your family much love and strength xxx
Good ness Charlie – what a beautiful piece. I think every mum worries about this, but when you have a child with severe autism, the pain and depth of worry must be so much more. He does have an incredible Mum and he’ll always be stronger and more resilient for having that love and strength from her. Carrie x
Thank you Carrie. I really do hope so 🙂 Cxx
Beautiful post Charlie. Thank you x
Thanks Emma xx
This is such a touching post and I can see why you think these things when Harry is so reliant on you for his emotional wellbeing.
I understand your point in point three – it would be heart breaking to think that your child has forgotten you – but maybe it would be a good thing for Harry in a sense. You say in your post that Oliver still gets upset about your nan passing away, but Harry is oblivious. Maybe that is what keeps him happy because he doesn’t remember to be sad.
Debbie
Hi Debbie, yes thats very true -even though it made me cry to read it. Maybe forgetting and not knowing the pain of loss is just another one of his many gifts. Thank you C x
Such a beautiful piece Charlie. ❤️
I have no experience to offer wisdom on but I’ve recently started working with a charity and have seen that there are some incredible places out there advocating for adult autistics with such amazing sensitivity and a fierce determination to offer an incredible life.. Although he will never be in as good hands as he is with you, he may find a Harry version of happiness and amazing care In something similar that will provide some continuity for him. That is way, way off but it does my heart good to know that these places exist and see the kind of care they offer. I always think of you and Harry when we talk of what is next on the agenda in caring for the autistic people we support to live fully.
Heres to many years of being your boy’s ‘suitcase’ and him being with your family xxx
Thanks so much for your gorgeous comment. I love ‘a Harry version of Happiness’ and that you think of us as you plan for the future care of other brilliant unique individuals Cxx
This is a really beautifully written and honest post Charlie, it’s clear to see how strong a bond the two of you have which is lovely
Thanks so much. Hes definitely a mummy’s boy and I am more than happy with that 🙂 C x
I can relate! Even 6 years into a diagnosis…. no-one knows my son like I do. Not even his dad. No-one.
I absolutely agree. We know the very bones of them 🙂 Cx
This broke my heart. Your fears are all too real for a parent with a heavily dependant child. I hope you live a long and happy life 🙂
Thanks so much for reading the blog and taking the time to comment xx
Wow, my heart just broke for you, at the same time as understanding deeper than i thought I would.. I’ve had to deal with death too many times recently, the idea of it being me leaving Robin behind.. a child who is fiercely independant is bad enough.I cant begin to imagine how terrifying the concept must be with a highly dependant child. You’re incredible.
Thanks so much for your lovely comment and I am so sorry that you’ve experienced grief lately. I think leaving our children behind is never easy but yes, I have more to worry than most I think. Much love to you C x
It must be so hard not knowing what the future holds. All we can do is live in the moment and do our best to prepare. Whatever happens, he’ll have a network of people who will take care of him, maybe not in the same way you do, but in their own way and that will be ok. <3 You've a long time yet though xx This post has been featured on #BlogCrush, congrats 🙂 x
Thanks so much! Amazing to have made it onto the blog crush! Of all the topics I have covered this is the one that still touches me daily C x
I came across your blog by happenstance of a friend replying to one of your tweets. I’m the father of a 12 y/o intellectually disabled girl and what you say in this post is also a fear that I identify with every day. My daughter will always require assisted living for her life and I’m terrified to think of what things will look like for her if she doesn’t have my wife or I to depend on. I thank you for your brave words and your sharing of your fears. You have a beautiful boy and wish you all long and healthy lives.
Hi Marty, thanks so much. Im not sure where you are based in the world but have a look at the blogs I wrote on setting up a trust fund. There will be versions everywhere. Since we did that for Harry I do feel slightly better (although the fear never leaves us does it!) Wishing you all well. C x