Finding her voice and losing my sanity – a sports radio journey with autism

Finding her voice and losing my sanity – a sports radio journey with autism

I wanted to publish a series of Stories About Autism from different people, in an attempt to show just how different and unique autism is in each and every person. Today’s story most definiety achieves that. It comes from Liz, mum to ‘Boy’ and ‘Melon’ who runs the wonderful facebook page Cat on a Trampoline. People on the spectrum often have strange and wonderful obsessions and interests, and that’s certainly true of Boy and Melon. Here, Liz tells us all about how the TalkSport radio station has become a permanent fixture in their lives!

I don’t know much about football, I’m not that interested in sport, and I’m certainly not that interested in listening to people talk about sport 24 hours a day, but as a result of having two autistic children, the sports discussion radio station TalkSport has become a part of my life in a way I could never have imagined.

When I was growing up, my late Father (who raised me as a Birmingham city fan, which is probably why I never developed much love for the beautiful game), liked to share his music with me. We’d listen to cassettes (yes, I’m that old), and later CD’s, in the car – Queen, rock and 1960’s hits were always a feature of any long journey. But we always started the day by listening to the BBC Radio 2 breakfast show. And when I became an adult and gave birth to our daughter Melon, I wanted to repeat the family tradition by sharing my music tastes with her. And so in the car, and around the house, I would play her music. It turned out that R&B and dance music were her genres of choice. True to family tradition though, we always listened to Radio 2 over breakfast. Then in 2012, not long before I gave birth to our second child, my Husband began to tune our morning Radio to TalkSport so he could listen to coverage and discussion of the Euro 2012 European Football Championship. Melon was three at this point, and it was becoming clear that her development wasn’t following usual patterns. She could say a lot of words, in fact she had a huge vocabulary, but she spoke very little, and had no interest in either conversing or playing with others. We struggled to understand what she wanted and needed. I was worried about her every day and every night.

After Euro 2012 finished, and our son was born, I reverted to listening to Radio 2 in the mornings. Then one morning at breakfast, Melon flew into a prolonged state of disturbed behaviour – crying, screaming, extremely distressed. I didn’t realise it at the time, but she was having a meltdown. Something that looks a bit like a tantrum, but is actually the result of an autistic person becoming uncontrollably anxious and experiencing an overload of their senses. She was so upset that she couldn’t even use the few words she did have. I was desperate to help her and didn’t know how. Then I managed to pick one word out of her sobs and screams  – ‘tuss mush”. Over and over, “Tuss Mush.. TUSS MUSH!!”. I couldn’t understand what she was saying.

When you have a child who barely speaks, you will give ANYTHING to have them try and talk to you. To have your child try so hard to use their language, and to not be able to understand is heartbreaking and frustrating, for them and for us. Eventually Melon ran to the kitchen worktop where the radio was, and yelled “

Then she made a gesture, like a high five, in the direction of the radio. That little action Highlights a common misunderstanding about communication and autism. It’s not that the person can’t speak, it’s that they don’t understand how to communicate and why. Take pointing, even young babies know that by pointing, they can draw someone’s attention to a desired object, can share their excitement about it, or to make a request for the object. It’s an essential building block of speech and communication development. Melon never pointed as a young child, she didn’t understand that she could, or why she should, not until much later on.

That morning though, she made that furious gesture, towards the radio, and yelled “TUSS MUSH!!”, and it suddenly clicked. She wanted talksport on. I asked her “you want talksport?”, and again she gestured and yelled “Tuss Mush!!” I turned the radio on and selected Talksport. Melon hugged me. I hugged her. As we listened to the gravelly voice of a Glaswegian guy named Alan Brazil spouting his opinions on a range of sporting issues, Melon gradually calmed down.

And that was it. Talksport had entered our lives and slowly it became part of the soundtrack to our days. We still listened to music in the car and around the house, but every mealtime, Melon would ask for “Tuss Mush”. It seemed to relax her. She’s probably the only person in recorded history who finds it soothing to listen to the sound of Mike Parry and his borderline-apoplectic rants. I thought it might just be a phase, but no. TalkSport was there to stay.

It was there in the background through Melons assessment and eventual autism diagnosis. It was there through the fear, uncertainty and emotional bargaining that followed. It was there as she began to develop the disturbed sleep that can be a characteristic of autism. Many was the morning that I would be awake early enough to not only catch the tail end of the nighttime “Extra Time” programme but to also experience the early morning fishing show “Fishermans Blues” in its entirety. I never knew that landing a large pike was something that people could become so emotive about. Talksport was there as Melon started school, and the difference in functioning between her and peers became more noticeable. It was there as I returned to work after maternity leave. It was there as we began to notice the familiar signs and realised that our son, Boy, was also autistic, it was there through his assessment and diagnosis. Talksport was there when I eventually had to give up work as the effects of chronic sleep disturbance and a deterioration in Boy’s behaviour took their toll. It was there when we made the decision to move Melon out of mainstream school and into special school, and when we realised that Boy would never be able to access mainstream education.

I said that TalkSport was always there in the background, but sometimes it takes more of a centre stage. My children, like many other autistic children, stim. They stim a LOT, especially vocally. For those who don’t know, a “stim” (short for self stimulatory behaviour) is a repeated sound or movement. It can serve many purposes for the person, but usually helps to relax or distract them in some way, or to express an emotion. This includes vocal stimming (making sounds with the voice) and Echolalia (repeated words or phrases which the person has heard elsewhere). Now, TalkSport has adverts, a LOT of adverts. And most of them are catchy and rather repetitive. Needless to say, my children LOVE them, and they repeat them ALL. THE. TIME. Melon used to sing the “Autoglass repair Autoglass replace” jingle constantly when she was annoyed, Boy often shouts “checkatrade, checkatrade dot com” if he’s bored, or wants to get a reaction from me (that reaction being a faint “please love, not again”). The “Tool-station” one-word jingle, the “medals and Trophies dot com” jingle, even the words to that “Wonga dot com” advert that I’d rather eat my own leg than ever listen to again, they’ve all been part of my childrens lexicon at various points. Sometimes, the adverts raise deep, philosophical questions to my sleep deprived brain. Take the Amigo loans advert. Is it really, as they claim, good to have an amigo? Or will it merely trap me into an ongoing cycle of debt? Other times they impart crucial information, like the fact that Selco is where the trade go. The advert doesn’t specify exactly which trade it’s referring to, but if I ever need an emergency roofer, I imagine I’ll find one hanging out by the burger van in the Selco car park. The TalkSport adverts even influenced my Spotify playlist. That Tradepoint advert set to the tune of “Vindaloo” by Fat Les (the one which is still playing on TalkSport five years later) is a firm favourite of Melons. So much so that I had to download “Vindaloo” to Spotify so she can listen to it in the car.

Or rather, she used to listen to it in the car, but not any more. Recently, Melon has become more socially aware. She’s showing a real interest in trying to engage with other children, she’s more aware of her surroundings and of the emotions of others. She’s using language more to communicate. All of this is positive, but along with this increased social awareness comes increased social anxiety – about where we might be going, who we might see, about what might be expected of her. As her language skills remain limited, Melon can’t put those anxieties into words, so at transition times (where we move from one activity or place to another), and especially on car journeys, she gets agitated. To help herself cope, she’s started requesting TalkSport on all journeys, however long or short. Control over her auditory surroundings helps her to feel less anxious about the unknown and unpredictable parts of her life.

So now, especially in the school holidays, I listen to TalkSport almost constantly. The DJ’s and their personalities have become familiar, almost like friends. I even find myself hearing a sporting news story and wondering what their perspectives on it would be. The wider world is going through a real period of change and turmoil at the moment, and strangely, in the face of terror attacks, Brexit, Trump and so much uncertainty, listening to TalkSport is comforting. When the world and the pace of change feel overwhelming, and everyone constantly talks about geopolitics, It’s somehow soothing to know that cup finals will still be played, transfer windows will open and close, and the rhythm of the sporting year will continue regardless.

So thanks Talksport. Thanks, for the company, the irritating jingles, and the sense of perspective. And because even if we haven’t slept, and I’m stuck in evening traffic contemplating the future for my family, while my son yells “Checkatrade!!” every ten seconds, and I’m faced with listening to 45 minutes of Adrian Durham and Darren Gough listing the many perceived failings of Arsesne Wenger, it’s still better than listening to a Peppa Pig CD. And it could be worse, at least I’m not an Arsenal fan.

You can read more stories about Liz, Boy and Melon on the wonderful Facebook page Cat on a Trampoline