My mad life: Caring for an autistic teenager

Midlife for Sarah Shackleton revolves around the needs of her autistic son

By most peoples standards, I live a mad life. I am in my fifties and have a fourteen year old son with autismand most of my existence is delineated by that fact. If I lived another life I might be spending this moment talking to my son about his subject choices for next year. Instead, I am answering questions like:

Is there still poo in Elvis’ body?” 

and hearing seemingly random utterances like:

 I’d like to put a duckling inside my mouth. And then it would start to cry. Awww, poor little baby duckling.

You kind of end up with two choices: fit in at the expense of both yourself and your child, or say fuck it and find a new way to live according to your own beliefs. I’m in the second camp.

Being a woman and navigating how society expects you to behave, and how it rejects or embraces you according to that behaviour, is a tough journey. Being a woman with a special needs child is that on steroids. It takes a village to tell you all the ways youre doing it wrong. You kind of end up with two choices: fit in at the expense of both yourself and your child, or say fuck it and find a new way to live according to your own beliefs.Im in the second camp.  

 And all the while the questions and random utterances continue. 

“I want to lick a sexually transmitted disease.” 

“When a dead body starts to decompose, does it stick to the bottom of the coffin?” 

I am going through all of the same reconfiguring that every woman in her fifties goes through…and I know that even though I am changing, that nothing in the practical mothering part of my life is really going to. 

 I am going through all of the same reconfiguring that every woman in her fifties goes through – rethinking what my life means, whats important, my place in the world, what I want to achieve in the future – and yet in the middle of this I have a person who still depends on me for everything, and I know that even though I am changing, that nothing in the practical mothering part of my life is really going to. My son depends on me for things that most mothers stop doing by the time their child is five, and theres a strong possibility that it will stay that way forever.  

Every morning and every night I stand on my tiptoes and brush the teeth of my 5’11” teenagerand every day I cook, without variation, the meal that goes with the weekday. My tall skinny son eats like its his job.  

 “Did Franz List die before or after Judy Garland?”   

“Do you want to touch a man’s penis while he uses the urinal?” 

I got divorced last year. Its not surprising; the divorce rate in parents of special needs kids is twice as high. We hadnt been a great marriage for a while, but were a good solid family. Were all happier now.  

 “Once I put my feet in bed, does the floor around the bed vanish?“ 

“Why do adults just look at things, but children play with them?” 

I dream of adventure…Instead I moved us out of the city and into the forest. I got some horses and ducks. This is my adventure for now.

My son is totally ruled by routine. I am the opposite. I dream of adventure. But travelling of any kind requires a huge amount of planning. I take two suitcases, not because we bring a lot of clothes but because I have to dedicate an entire suitcase to food, a toaster and a pressure cooker. I want to live on a boat in the Caribbean, stay in an ashram for a year, start a commune, ride a camel across the desert. I want to spend five hours sitting on a chair by a pool reading a book uninterrupted. Instead I moved us out of the city and in to the forest. I got some horses and ducks. This is my adventure for now.   

 “I want to put my face in someone’s vulva. Has anyone ever done that?”  

“Can I meet the president of the Longshore and Warehouse Union?”

Until six months ago, I’d never spent a night away from him. In fact I had never spent more than four hours away from him. 

Most of the time my days are filled to the brim with the heady brew of laughs, drama, excitement and boredom that living with an autistic child brings. I am with my son 24/7. Until six months ago, Id never spent a night away from him. Ifact I had never spent more than four hours away from him. He sleeps in my room. In his own bed, but in my room. This is not because he doesnt have his own room; it is because he cant cope with being that far away from me. 

 “Why does it matter if I have stains on my t-shirt?”  

“I don’t like that girl. I wish her dad had worn a condom.” 

It is very similar to being in any domestic abuse situation, but its the only one that you dont have the choice to leave.

My son, like many other children with autism, can be violent. It is very similar to being in any domestic abuse situation, but its the only one that you dont have the choice to leave. From five years until eight years, my son had 40 minute violent rages five times a day. Thank goodness, with the help of some amazing therapies, this intense period is over. He is still violent, but it is not often now. I would not emotionally survive it again; the trauma was too great. His violence only happens every few months now. The last time was two weeks ago. We had a power cut. He was in the middle of watching something online and couldnt cope with the unexpected change. In the middle of his rage, the power came back on, and he instantly calmed down, then cried at his behaviour and promised never to do it again. Exactly as an abusive partner would.   

 “What song does the shovel sing while it digs?”  

“This is where we went hiking with your friend’s daughter’s bottom.”  

With a child with autism, you have the opportunity to see through the eyes of someone who has no preconceptions of how life should be or what society expects of us.

 

My son’s lack of understanding of how society works means I have the opportunity to constantly see things in a fresh light and decide anew how I want to be. 

If most children are somewhat domesticated, my son is feral. like that about him, even though it challenges me immensely. With a child with autism, you have the opportunity to see through the eyes of someone who has no preconceptions of how life should be or what society expects of us. There is a constant reminder that life can be different, that its okay to do the things that we have been so programmed not to do that we forget to even question it. My sons lack of understanding of how society works means I have the opportunity to constantly see things in a fresh light and decide anew how I want to be. My sons questioning of what is generally seen as important is so refreshing. It cuts through so much unimportant nonsense.  

 “Why can a dog pee on the street but a boy can’t?”  

“Do you like it that your friend died?”   

Neurodiversity doesnt fit well into the neatness that society demands from its occupants. 

People love to be nice to people with special needs, until it gets uncomfortable. And it gets uncomfortable really quickly. Over the years I have lost too many of my friends. I lost about six at once at a 5th birthday party when my son kicked another child, causing that child to lose his front teeth. It was one of the hardest days of my life. I couldnt even speak about it for three years afterwards. I lost a couple more friends because I couldnt hang out for grown up dinners without my son. Our society isnt set up for scenarios like mine. Neurodiversity doesnt fit well into the neatness that society demands from its occupants.  

 “Let’s build a mall with a fountain of an ejaculating duck.”  

“If you go up the stairs before me, will they still be there for me to follow after?” 

Its impossible to express how much you learn as a special needs parent and how much you it changes you.

There are many joys and adventures within this journey. Its impossible to express how much you learn as a special needs parent and how much you it changes you, sometimes kicking and screaming, but it changes you nonetheless. And yet within these changes, you are stuck in a kind of limbo. The journey is so fundamentally different from the journey other people are travelling. It can be intensely lonely and isolating. While youre helping other people travel through the grief that they feel when their children leave home, youre dealing with your own grief that your child never will. While you listen to other people talk about their children not communicating with them, youre being interrupted by your own child who still hasnt figured out what a conversation is. While you empathise with the issues your friends older children are having at work, youre mourning the fact that your child may not have an independent life at all. Chances are, the concept of an empty nester is not something you will ever have to navigate.  

 I go through the same changes that other women in their fifties go through, but my life itself doesnt show any outward signs of change. Sometimes my nose is pressed up hard against the fantasy window of a mother of a neurotypical child, longing for all the things I imagine happen in their neurotypical lives: invitations to birthday parties, Sunday dinners, children who carry shopping in from the car, adventures and laughter, sweet notes written to parents, communities of likeminded people helping each other, teenage friends hanging out and eating all the food in the house. These are my fantasies.  

 “Let’s cut out a duck’s eyes and put them back in facing the front instead of the side so then they’ll be predators instead of prey, and then will be safe.” 

…if I stay open, I learn such amazing new ways to see the world.

For me personally, I struggle to see myself as a woman in my own right, and not just the mother of a special needs son. As I get older I find I increasingly need to see myself as more than this. Sometimes its hard not to feel left behind, forever floating in the same seas. But yet at the same time, if I stay open, I learn such amazing new ways to see the world. Having a special needs child is like a guru coming in to be your own personal teacher.  

 “I’m the water coming out of the hose.”  

“Which is more fun, a funeral or a gymkhana?” 

 

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