I wonder what comes to mind when you think of a fireplace? Take a moment to imagine one now and consider what you see…

Perhaps you see the warmth of the flames on a cold night or the relaxation of the flickering red and orange light. Perhaps there is a dog or cat relaxing and staring into the flames. Maybe you imagine a fireplace that has candles in the gap where a fire once burned, because those are a bit more modern, but equally warming, and somehow fire belongs in that space, even if the original wood burner is now absent. Or maybe you imagine a cooking pot hanging on a iron beside the fire, because for so many centuries, humans did all of our cooking at the fire and, for you, the hearth is still the heart of the home. 

Perhaps your mental image of a fireplace is rather more festive and you imagine Christmas Eve as Santa secretly comes down the chimney with a bump to deliver all the children’s presents, while his reindeer hang out on the roof above. Maybe you think about leaving the plate of milk, cookies and a few carrots for Rudolph on the hearth that allows Santa to grab a quick snack on his rounds. Even as adults, there might still be a little flicker of excitement at that image!

Now, if you would, extend your imagination just a little bit further: think about the mantlepiece surrounding the fireplace. What do you imagine sitting there? Perhaps it’s an area decorated with family photos, candles or ornaments. Maybe there are abandoned “treasures” that either need putting away or may just need dusting…forever! Maybe the mantlepiece that pops into your mind is decorated for Christmas with garlands, fairy lights and other decorations that, make the whole room look festive.

In other words, whatever the image of a fireplace springs to your mind, it usually involves light, warmth, relaxation, decoration, celebration. In many ways a fireplace still forms the heart of the family home and tells the story of the family who live there.

You might be forgiven for wondering why I’m asking in such great detail about your images of a fireplace. Well, this week, I noticed something about my own fireplace, mantlepiece and hearth and realised how much it tells the story of my family over the last decade and particularly, the story of living with, loving and raising a complex autistic child.

Before Adam was born, the mantlepiece of the where my late-husband and I lived was covered with the usual array of glass fronted, family photos in delicate frames, fragile ornaments, candles and, during the Christmas season, garlands and fairy lights. It was one of the many areas we decorated that showed the story of our family as it was then. Here, appearing in a number of our family photos is an example:

Across these four photos (some of which are wonky as the real subject of the photo has been cropped out) you can see a fireplace littered with the usual array of family photos, ornaments, Christmas decorations and “abandoned treasures” – to put it politely! Some of the items on it are fragile, made of glass that was clearly breakable, dried flowers that would crumble if touched, and in one image there is a lava lamp that was incredibly hot when switched on but relaxing to look at. There’s nothing particularly unusual about any of these photos; they simply demonstrate a family life lived around a hearth and I love that our adored Dillie, a rescued Alsatian who was an absolute treasure, makes an appearance in one!

In the last of the four photos, where he is playing with his brother, you can see that Adam was around two years old. At this point he had received some of his diagnoses (dual hearing and visual impairments, together with asthma) but we didn’t yet know Adam was autistic. Even though he was starting to demonstrate some behaviour that brought challenges to our family, it wasn’t yet extreme.

Before I move on, just as a little aside here, I want to be clear that autism doesn’t necessarily come with challenging behaviour and every autistic person is different. Being autistic can quite easily be just a different way of thinking, living and operating that is not less but simply demonstrates the variety of the lived human experience. However, as those who already know our story will know, Adam’s autism comes with additional challenges, very high support needs, complex learning difficulties and has resulted in him frequently lashing out at a world that is difficult for him to understand and cope with. As the saying goes, if you’ve met one autistic person, you’ve met one autistic person. But back to the fireplace…

As Adam grew older and the combination of his autism, learning difficulties and the resulting violent and challenging behaviour became more obvious, our lives changed. They were forced to change as we endured what felt like a violent thunderstorm in our midst. I have often described Adam as my little Jekyll and Hyde: when he’s lovely, he is utterly gorgeous, but in a split second, he can change so it was a life lived always waiting for the next explosion and trying to do everything I could to make sure the environment around us was as safe as it could be. Once Adam had turned into Mr Hyde, it was much too late to consider the environment, all we could do was react, contain and support him through it, while trying to minimise the damage. There were many examples of this experience, but one of these was the fireplace and how it changed over the years.

At first, the ornaments disappeared because they were missiles that would be broken or thrown during a tantrum or meltdown. Then family photos disappeared because the glass frames could be similarly broken or the metal frames cause injury. The dried flowers, having been tipped over and kicked multiple times, had long since crumbled into dust. “Abandoned treasures” were no longer left within reach of Adam because they too could and would become missiles. The lava lamp definitely had to go because of the danger of burning it represented. Even Christmas decorations, garlands and fairy lights were no longer put up because the strangeness of them, the break in routine and things just being different, had become intolerable. Everything had to stay the same year round; we could just about stretch to a Christmas tree, but ideally it would be in the rarely used dining room because the door to that room could be closed when Adam wasn’t coping. Eventually, by the time we lived in the next house, from Adam’s age 3 to 7, the fireplace looked like this:

To be sure, there is one candle on the floor to the right of the image, but it’s made of heavy, unbreakable wood. There are 3 tea lights on top of the mantlepiece that had probably been lit after Adam had gone to bed the night before, but nothing else, no other decorations. While you can only see the bottom of it, the TV is mounted on the wall above the mantlepiece because at the height Adam was then, he couldn’t reach it to overturn or smash it – by this point, TVs were already excluded from the ‘accidental damage’ part of our insurance policy as we had claimed for replacement of about four after Adam had thrown toys into the screen. Also, all of the cables are contained in trunking or otherwise fixed down, there is very little that can be grabbed or tugged.

You wouldn’t know for looking at this image, but the gas to this fireplace has even been professionally disconnected so it could never be lit, to prevent Adam fiddling with switches and turning on the gas without knowing how to light the fire, thus causing disaster to us all. Despite the next very lovely Gracie dog sitting in front of it, this is a far more stark fireplace than the one that went before. It doesn’t feel like the “heart of the home” but it definitely tells the story of the family who lived there.

By the time we got to the next house, in which we lived while Adam was 7 to 10 years old, there is one small but significant change; after the first year, I was able to have the gas reconnected so on cold evenings, I could at least light the fireplace, though admittedly only after Adam had gone to bed. But still, the mantlepiece is largely bare other than a greeting card and a Nintendo Wii game that Adam liked, so always wanted to have on display, together with the (somewhat historic) landline phone.

Those lamps you can see on either side of the mantelpiece that are decorated with butterflies were made of paper and virtually indestructible, having been bought for that reason. The very stupid cat was just a bonus…thankfully despite multiple efforts, he’s never yet lit himself on fire!

But, despite the warmth of the pictured flames, this is still a starkly bare mantlepiece and hearth so it continues to tell the story of a family who could not choose to decorate a space as they may have wished, but a family who were adapting to and accommodating the needs of the disabled child in their midst:

Until very recently, this is the way things remained. After being widowed, Adam and I moved again. Here, you can see that things had improved a bit…or maybe I was just immune to breakages by this point! There is artwork hanging above the fireplace, but what you cannot see is that it was securely fastened at both bottom and top to ensure it would remain in place. Those tulip shaped lamps might look fragile, but they’re entirely made of plastic with little LEDs inside the flowers and vase sections. Similarly, the two photos of Adam have plastic frames and are fronted in plastic, not glass. The nativity ornaments on the mantlepiece are also made of plastic and the tulips on the right of the image are made of wood.

In other words, all of the decorations you can see are virtually indestructible, they could have been used as missiles, but they could not have been easily broken. So, some “pretty things” are finally appearing, but they are still all chosen based on the disabilities of the child living in that space and are fit to endure any storm that may occur in the room around it:

What you are seeing in these images is a life lived in survival mode, where the fireplace and mantlepiece I might have imagined in my minds eye is not based on how I would have liked to it look, but is instead adapted to the needs of the disabled child in our midst. The years long decision not to have any form of decoration around our fireplace, and only rarely to have it lit, was not one made out of a lack of desire for decoration, but out of a knowledge that any decoration was too risky. Finally, once decorations were allowed to return, they were all still chosen to be able to cope with the moods and behaviour of a complex autistic child.

Those of you who know me or who have read this blog before, will know that nearly eight months ago now, Adam moved into his residential special needs school under a voluntary Section 20, which is the vehicle in UK law that allows a parent to say we just can’t do this anymore. We need more help to support this child than is available to us in the community or with the child living at home. This decision means I still have full parental responsibility and am fully involved in Adam’s care, but he is now supported around the clock by trained care, education and therapy staff, initially on a 2:1 adult to child ratio and, now as he is becoming a bit calmer, mostly on a 1:1 adult ratio but with the option to pull in more adults when they are needed. While I spend time with him multiple times a week, he only rarely comes to visit me at home – and it is now a visit. He no longer lives with me, despite being only 12 years old.

Making this decision was utterly agonising and involved such levels of heartbreak that it took me quite a while to adjust to it, thankfully helped and supported both by very close friends and by staff at Adam’s school. At first, I struggled to perform even the most basic tasks without panicking over them – for example, realising I had run out of milk at 8pm led to a mental spiral of wondering what I was going to do, how I could find a way to get milk so I had some for Adam in the morning, could I arrange a grocery delivery that quickly? Because being without milk in the morning was not an option, and taking him to a grocery store was also not an option. It took a fair while for my brain to stop skittering and to realise that if I wanted and needed milk, I could just go buy milk; Adam no longer lived with me so I didn’t have to be behind locked doors from 4pm until 9am. Quite genuinely, being able to go to Aldi at 8pm felt like an actual adventure for quite a while.

Slowly, over the months that followed, I have begun to heal and to realise that I can make decisions about what I do, where I go, and yes, to decorate my own fireplace, without worrying about missiles, destruction and meltdowns. It has taken a long time to get to this place, but a few days ago, I was sitting in my lounge for the evening and for the first time in a long time, I looked – really looked at my fireplace. This is what I saw:

There are lit candles, fragile glass and china ornaments, fairy lights, a glass fronted photo of my boy and yes, the plastic and wooden tulips still remain, but this is now an eminently breakable fireplace and mantlepiece…and it’s ok. It no longer has to be anything other than what I wanted it to be and how I want it to look. This seemingly innocuous photo represents healing, moving out of survival mode and rebuilding my life. This fireplace represents choices and it still tells the story of my family and my home.

I wonder what your fireplace tells about your story?