I’m planning to chronicle my traumas before I start another course of therapy through Worcestershire Healthy Minds. Here are a couple of stories about times when I’ve faced my fears and this has backfired. Bear in mind, I didn’t know I was autistic when these things happened to me.
Aged fourteen, I was on a family holiday in Wales. I stood on a weaver fish at low tide. Searing localised pain under my foot, with numbness spreading above. Thought I was going to drown, I went into shock. My parents found the lifeguard who made me lie with my foot in a bucket of water. I drifted off to sleep…
When I woke up, the pain in my foot had started to subside. I had been lying in a bikini in the heat of the midday sun (yes, in Wales) and my back was severely burned. It was so burned it blistered. We were only a couple of days into a two week holiday. I couldn’t bear anything around my waist and back for the rest of the holiday, just the one loose dress thar I had with me. I also developed a fear of the sea.
Forward wind to my mid-twenties. I don’t like giving in to fear, letting fear control me. I tried to conquer my fear of heights by going skiing. Well that backfired, as I had two panic attacks halfway down ski slopes. I was ok in the beginners skiing classes that I took in the mornings, following the instructor, but I panicked when trying to ski with my then boyfriend. My fear got worse. Since then I’ve struggled more with heights. I’m ok when harnessed (e.g. rollercoasters) or enclosed (e.g. cable cars), but panicky around cliffs, on spiral staircases, castle walls… I can’t bear my husband or kids being near the edge of steep drops. My tummy lurches.
Did I learn?
Fast forward to 2015 and my 5th wedding anniversary holiday in Menorca with Si (my 2nd husband). Our hotel not near a sandy beach. It was very near to a beautiful rocky cove, where locals skinny dipped and sun-bathed naked on the rocks. Steps lead from the rocks down into the sea, which was crystal clear and full of fish and other sea creatures (add photo later).
Si dived into the clear waters. I sat on the rocks with my feet in, but dared not go in. There was no shallow area, just steps down into the deep sea. “Come in, it’s lovely” Si appealed. “I’ll come in with a rubber ring” I said.
The next day we bought a rubber ring, and returned to the rocky cove. I lowered myself down the stairs with the ring, then got in. Enjoyed floating on it and looking at the creatures through the clear water. Some locals swam from one side to the other, about 100 metres. That’s about as far as I can swim in a pool without resting…
Note: Media interest in our story is not welcome. Names have been changed, so don’t bother googling us.
My first-born son killed himself earlier this year, out of the blue, aged just fifteen.
For background, since starting high school in 2017 Iggy had been struggling increasingly with anxiety. In an initial consultation in Spring 2018, a child psychiatrist concluded that the anxiety attacks Iggy described to her were actually something more extreme: autistic meltdowns. Her initial impression was that Iggy was suffering from anxiety and low self-esteem, and the underlying cause was (in her words) Asperger’s Syndrome.
We arranged for Iggy to have six sessions of therapy with a private therapist experienced in helping autistic adolescents, which seemed to help. He was then discharged without any concerns.
Meanwhile, after the GP referral for autism assessment was rejected by both CAMHS and the community paediatrician, the school SENCO referred Iggy into the umbrella pathway for support. This led to his autism assessment, a lengthy process with much form-filling and many delays. Eventually Iggy began receiving extra support and reasonable adjustments at school. Things seemed to be looking up.
I was going through the adult autism assessment at the same time, although the process is quicker and simpler for adults in this area. There are no NHS diagnosticians for autism in adults around here, so the NHS outsource this to the private sector.
Iggy and I swapped notes on walks and car journeys about our autistic experience. We talked about eye contact, social awkwardness, anxiety, sensory issues. We were in Club Ausome together.
Iggy was very excited to be taking part in the Bronze Duke of Edinburgh Award (DofE) programme through his school. He launched himself into his community volunteering placement. He joined a gym and started weight training, knowing that he would struggle to carry a heavy rucksack on the expedition due to being slender and hypermobile.
He and I went on increasingly long walks together, to break in his walking boots and build up his distance. Our longest walk was nine miles, which included the whole length of the Tardebigge and Stoke flights of canal locks and meeting the rest of the family for a pub lunch at the other end.
These walks turned out to be such a gift to me, because on these long country walks Iggy and I talked and talked. Side-eye conversations for hours. Now I can retrace our footsteps, and recall our conversations (my audio visual memory is great, an autistic talent of mine).
I can easily remember details like which canal lock we sat on to eat our picnic one day (it was a Mary Berry banana fudge loaf, because neither of us are sandwich fans). I also took a lot of photos, which helps cement those memories further.
Retracing the steps of one such canal walk with my husband earlier today, I told him of my intention to transcribe some of these conversations with Iggy into a blog. I don’t have time to write much at the moment, between work and family life. I work four days a week and I get overwhelmed easily.
Here’s a conversation I was reflecting on with my husband today. I will add more later, which is a brilliant thing about WordPress blogs.
Talking about high school bullying on one of our DofE walks, I told Iggy how I had been mocked at school for being unfashionable and “square”. How I tried to rise above it, tried to tell myself that I would go on to be successful and happy. That the bullies would no doubt end up miserable. That things would get better when I was a grown-up, as I’d have my own money for clothes and I’d be able to avoid bullies. And if I couldn’t avoid the bullies, at least I would have a black belt in Tae Kwon Do by then and be able to kick their heads in with my expert reverse turning kicks (he giggled at that). In reality, there are still bullies in adult life, it wasn’t just my clothes that made me different anyway, and I never got my black belt.
My advice about needing to find inner strength and self-belief to rise above bullying, that I stand by. “Indomitable spirit” as they call it in Tae Kwon Do.
It is a Utopian dream to make the world a better place, with every child brought up to respect human differences, with zero tolerance for bullying. But there are nasty people everywhere, and we need to develop strategies so we don’t let the bastards and bitches get us down. I’m not victim-blaming here, nor using that loaded term “resilience”. Bullying must be tackled, but we need enough self-esteem to be able to rise about taunts relatively unscathed, rather than believing what they say and growing to hate ourselves.
I also told Iggy about how his father, my first husband, despite being weird, was left alone by bullies because he developed his own unique brand of cool as a locally successful teenage DJ.
I was saddened by Iggy’s responses. Apparently he had managed to get the bullies on the school bus onside by allowing them to use the Wi-Fi from his mobile phone (me I had walked miles to and from school, as the bullies on my bus were intimidating). At school, bullies wouldn’t leave Iggy alone. Bullying was frequent, but subtle and covert, so difficult for the school to punish. Cruel taunts whispered whenever teachers couldn’t hear. Death by a thousand cuts.
Iggy really took it to heart. Bullies once teased him about a lock of hair sticking up at the back of his head after a haircut. For weeks he obsessively plastered it flat.
“I just do everything I can to try and blend into the background, so they don’t notice me” he eventually admitted to me. This was heart-breaking to hear, but no amount of me suggesting he embrace his weird and wonderful nature would make any difference.
There was never any suggestion that bullying was making Iggy’s life intolerable. Not even once did he try to get out of school. He trained for his DofE expedition, excitedly talked about his planned work experience, what he wanted to be when he grew up (an engineer in the car industry), he was looking forward to watching Avengers: End Game, he pestered me to order a rock tumbler to polish the marble pebbles he had been collecting on our walks.
My first husband dropped off a waterproof coat yesterday, asking “do you recognise this?”. It was the coat Iggy and I bought together for his DofE expedition. In the pocket, there were still some marble pebbles from one of our last walks together.
I can’t face watching Avengers: End Game yet, although I managed to watch Shazam with my husband and daughters on what would have been Iggy’s sixteenth birthday, our family film night with Iggy conspicuous in his absence. We all had a little cry about how much he’d have enjoyed it, how much we missed his easy delight at the things he loved in life.
There are numerous friends and acquaintances with whom I’ve suggested meeting up for a chat over a run, walk, coffee.
Just might take me a while to get around to it. This time of year is always overwhelming for me – balancing the demands of the busy period at work, the pressure of family birthdays and Christmas. Throw in winter colds and sinus infections which hamper my running and singing, those things I usually do to cheer myself up.
This year is worse. We’re still going through the firsts. First school summer holiday without Iggy was depressing. Then Iggy’s first birthday without him, which should have been his 16th. First round of family birthdays without Iggy. First Halloween. James is 16 next week, and he’s not meant to be our eldest child. Christmas is looming, then my birthday in January. Roll on birthday Amsterdam trip.
Bear with me. By February I’m usually far more available. There are no guarantees that normal service will be resumed, but at least the most overwhelming season will be done.
These are not my children’s real names. Media attention is not welcome, thanks. I do not consent for my words nor images to be republished anywhere else.
Izzy’s birthday is on Monday, but she’s with her dad, my first husband, for half-term.
This evening I took her out for an early birthday meal, an oriental buffet. She loves teppanyaki and sushi. They have whippy ice-cream and a chocolate fountain. Pancakes to order…
Izzy is the first of my children to celebrate their birthday this year.
Iggy would have been 16 last month.
I mused that Iggy would have loved the sushi, but would have drowned it in soy sauce. He’d have loved the teppanyaki too, although he’d have eaten the mushrooms raw not cooked. Cooked mushrooms are slimy, he couldn’t eat slimy food.
Pancakes, ice-cream and chocolate fondue… he’d have made a sloppy homogenous mess of that. He would have got it all over his grinning face.
Halfway through getting my plate of teppanyaki, I spotted the teriyaki sauce. Iggy’s favourite.
Fighting back tears, I try to smile and carry on eating. I can’t swallow. I twist the fork in the noodles, staring at them.
That familiar bag of snakes writhing in my belly is back. One of the snakes has unfurled and is squeezing my throat. Another squeezes my heart.
Izzy has noticed my mood crashing. She manages a Mona Lisa smile and picks the prawns from my teppanyaki. “You got extra prawns for me, right?”
If she’s missing her brother on her birthday meal, she doesn’t let on. She doesn’t want to add to the burden I’m carrying.
She does add to my burden though, inadvertently, because her stoicism makes me worry that she’s bottling things up, that it’ll lead to mental health issues for her. That I could lose her too.
I’ve got the weight of the world on my shoulders now. This heavy world in which my teenage boy did not feel ok about being autistic and gay. Could not rise above taunts from school bullies. Felt weird, and wanted to blend into the background, avoided drawing attention to himself. Trained for his DofE expedition and filled in the forms for his work experience, passing for feeling ok. But then quietly and deliberately looking for the nearest exit.
I’ve gone past getting triggered by autism parents talking about their grief for their living children. I grieve for my daughter, who discovered her brother’s body. Who has grown up too quickly, and developed a dark side at such a tender age. Who hides her own grief to protect her family.