A MUM-of-four has pleaded with people to be kinder after claiming strangers throw her dirty looks and make comments when her autistic toddler has a meltdown in supermarkets.
Jo Franklin, 40, said she’s been sat on the floor of Asda for an hour waiting for her three-year-old son, Ronnie’s, meltdowns to end.
Jo, who lives in Kent with her husband Joe, has been forced to abandon her shopping in the past as she’s been unable to calm down her son, as he bangs his head, thrashes around, shakes and headbutts.
Jo told Fabulous Digital: “Once I was in a soft play area and it triggered a meltdown, he pretty much silenced the room by his screams.
“He was on the floor absolutely thrashing around, trying to headbutt, physically shaking. He doesn’t cope with noise, crowds, any change affects him.
“He will have meltdowns, screams, cries, lashes out, headbangs recklessly, has ZERO sense of danger, will always put himself in harm’s way.
“He is overwhelmed by the lights, sounds, people and the opportunity to run off and investigate.
“Mainly, he has to lay on the floor to take in the world around him. He will, most visits, have a meltdown.
“To anyone who doesn’t know him, would automatically think he’s ‘just a naughty little boy’.
“That’s when things are tough, as people look, and you know people are thinking he’s a naughty little boy or I’m a bad parent that can’t control my child, and the truth is, I can’t control him during a meltdown.
“I have to just keep him safe, laying him down helps as he seems to rebalance himself and removes the risk of harming himself or anyone around us.
What is autism?
- Autism is a lifelong developmental disability that affects how people perceive the world and interact with others.
- Autistic people see, hear and feel the world differently to other people. If you are autistic, you are autistic for life; autism is not an illness or disease and cannot be 'cured'. Often people feel being autistic is a fundamental aspect of their identity.
- Autism is a spectrum condition. All autistic people share certain difficulties, but being autistic will affect them in different ways.
- Autism is much more common than many people think. There are around 700,000 people on the autism spectrum in the UK – that's more than 1 in 100. If you include their families, autism is a part of daily life for 2.8 million people.
- The characteristics of autism vary from one person to another, but in order for a diagnosis to be made, a person will usually be assessed as having had persistent difficulties with social communication and social interaction and restricted and repetitive patterns of behaviours, activities or interests since early childhood, to the extent that these "limit and impair everyday functioning".
“Yes, I’ve had people tut, shake their heads… but I get it! I know how it must look.”
Jo, who’s also mum to 14-year-old twins Daisy and Poppy, and Rio, 10, said the meltdowns started when Ronnie was around two, as when he was in a pushchair she could pull the hood down and distract him.
She explained: “Within five minutes of being in Asda he’s having a meltdown.
“If I can sense this meltdown is coming so I will try and find a quiet area but sometimes it’s not possible because he’s full blown meltdown and there’s no warning signs.
“And it could be at the top of the escalator, so we are blocking people’s way, and to be honest I was probably one of those people who thought ‘oh god get your child under control’.
“We’ve had people shake their head and people tut at us, but I think it’s because they don’t know and it presents itself as a behavioural problem, but it isn’t.
“I’ve never reacted to that. I had one lady come up to me once in Asda, she sat down and said ‘c’mon be a good boy for your mum’.
“You get the older generation, a lot of them will come over and say ‘be a good boy for your mummy’.
“I was conscious with people looking at me. I’m not so much now, because I think I’m used to it now.
“I’ve had people come over before and before they’ve tried to talk I’ve just said ‘he’s autisic he doesn’t understand’.
“We’ve had people shake their head, and I’ve been upset with it.”
Jo said she's been reduced to tears sometimes when thinking about Ronnie, explaining she went to a friend’s child’s birthday party, and Ronnie had a meltdown.
She said: “Their child was older than Ronnie, he was about three years older than Ronnie.
“So one he was younger than the group, but he’d had a meltdown, and I just felt, it’s horrible because they’re probably not judging you but you feel like you’re being judged as a mum.
“I was crying and I told my friend I said I’ve got to go. I just felt really sad. At that point he wasn’t talking, he wasn’t communicating I just thought why am I doing this.
“I’m sweating from every pore in my body. It was just pressure, an overwhelming sense of pressure when he has a meltdown.
“I don’t really know what the pressure is, if I’m being judged, because I can’t control him, because I haven’t got the answers.
“If your child has fallen over and grazed their knee you can give them a magic kiss, when he’s having a meltdown there is no cure.
“You can’t negotiate with him at all.
“I have cried a lot but he makes me so happy by seeing his flight path on the increase all the time."
Jo said she’s seen an improvement in Ronnie over the past few months, saying: “Ronnie’s meltdowns can last up to an hour and sometimes he will have 3 a day, however, lockdown has improved this so much for us.
“He has come on in leaps and bounds being in his safety bubble at home.
“He’s got really really bad sensory issues, getting him dressed is an ordeal and he doesn’t like it.
“So to prevent that absolute meltdown of getting dressed I’d leave his pyjama top on. And that pressure was gone.
“To be honest he was still flatlining, then lockdown came and he turned a corner. It was like someone switched on the lights.
“I’ve got pictures, before lockdown, and he looks so vacant and there was no depth to him, but now he’s got character now. He’s talking.
“I’m filled with positivity now that he can take what he’s got from lockdown, because he’s talking, not communicating, that is going to develop onto communicating, I don’t doubt that for a second.
“I believe he will go on to be a very successful person, because of how clever he is, determined. He has photographic memory.”
Despite the challenges it faces, Jo says she refuses to change her routine or compromise days out, and hopes that by taking Ronnie out he’ll get used to the hustle and bustle.
She said: “I don’t like to say no to an opportunity to go somewhere just because he might have a meltdown. But the thought is 100% there every day, how is he going to deal with that.
“I don’t ever think ‘no I’m not going to do that’, even though I know I might not want to as I know it will be tough with him. I still expose him as much as I can.”
Jo knew ‘deep down’ something was different about Ronnie from a very early age.
Jo recalled: “He didn’t look into my eyes, was non responsive to sound but held his ears to loud noise like the hoover or when we went into supermarkets.”
She initially thought something was wrong with his ears, but checks revealed his hearing was fine.
“It filled me with dread as I knew they could fix his hearing with aides if needed, but this confirmed something else wasn’t right,” she admitted.
“He didn’t ever look up into my eyes or coo, or babble, or anything that the others did.
“Then I started to think, he’s not saying anything like the other children are his age. I said to my husband, don’t you think he should be saying ‘mum’ by now, or waving or clapping on demand.
“That’s when the alarm bells started to ring. There was just nothing there. He was such a blank canvas still.
“Although he sat up and crawled and walked at all the right times, like following commands or if called his name he wouldn’t look.”
When Ronnie was 26-months-old, Jo received the diagnosis – autism.
Jo recalled: “He was diagnosed there and then with ASD (autism spectrum disorder) development delay, uneven pattern of development and hyperactivity.
“So when she said those words, momentarily our world literally crumbled…. in a thousand pieces.
“We knew NOTHING about autism, we worried what his future would be, would he EVER talk, would he have a career, a family??
“We researched autism and realised very soon, he has extra abilities, yes it’s a hidden ‘dis’ability but he has so much more to him than any child I’ve ever met.”
- Sunflower lanyard, Hidden Disabilities, 55p – buy now
Despite Ronnie having exceptional skills, such as counting in five languages, she says he lacks social skills, which makes taking him out and about a challenge.
Jo explained: “He is SO clever, he reads, writes…. again, the list is endless. The struggles are socially.
“He can do the alphabet in five different languages, count to infinity. It’s phenomenal, it’s absolutely incredible, he amazes us.
“I couldn’t conversate with him unless it involves colours and shapes and numbers. That’s where he’ll talk, but he won’t have a conversation.
“Even my husband will say to him ‘it’s a square’, and he’ll say ‘no it’s a rhombus’, and we didn’t even know what a rhombus or a trapezoid was.”
Jo is speaking out about autism, and also the sunflower lanyard, in the hope of raising awareness about it.
The sunflower lanyard and card alerts people to the fact you have a hidden disability, with the website explaining: “Wearing the Hidden Disabilities Sunflower discreetly indicates to people around you including staff, colleagues and health professionals that you may need additional support, help or a little more time.”
Jo, who’s been using sunflower lanyard for Ronnie since February, but says there isn’t much knowledge about it.
She called for more awareness around the lanyards, so Ronnie’s public meltdowns are understood more, as well as kindness from fellow adults.
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