A mum and dad are sharing the reality of what it is like to watch their daughters grow up with autism.
Parents Jack and Rebecca Smith, from Wigan, “felt helpless” as they struggled to understand what their two children “needed or wanted”. Jack, a 31-year-old project manager, said it was a “heartbreaking” position to be in as a father – but a position he wants others to know is completely fine to be in.
The married couple’s eldest daughter, Daisy, 10, was diagnosed with autism and sensory processing disorder (SPD) at seven years old and later with ADHD and sleeping problems. Daisy’s diagnosis came about after the parents compared her behaviour with their son, Max, who is two years younger.
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Dad-of-three Jack told the ECHO: “If we said we were going to the shop Max would say he didn’t want to go, but Daisy would have total meltdowns and really blow up over the smallest things. It made us start to question things but we thought it was just maybe because she had been used to being an only child for some while.”
On average, Daisy would have two to three hours of sleep a night prior to going on medication. Now, at best, Daisy will manage to sleep for around five hours a night thanks to the three tablets she takes daily.
Jack said: “The way her autism presented when she got older was violence really – against me and her mum. Noise or public spaces would be a real tipping point for her and she would have violent outbursts. It became indiscriminate whether it was an empty field or a supermarket filled with people, it wouldn’t matter she just couldn’t control.”
The dad explained how Jorgie-Rose is “very much at the other end of the spectrum”. While Daisy was high functioning and able to talk and walk before she was one, Jorgie-Rose only rolled over for the first time when she was 14 months old.
Jack added: “Jorgie presented very stereotypically – patting the tummy aggressively, pacing back and forward, speech regression and now she’s non-verbal. When she could stand up, she would put her head on the ground upside down and watch the TV. Her presentation was a lot easier to see for us, the traits were stuff we already knew about.
“It’s absolutely heartbreaking to watch it. It’s terrible and something you can’t describe. You can see their distress and that they want something but they can’t tell you what is wrong. Even Daisy, who can talk, can’t tell you what she wants or needs. You can see the stress coming on but not being able to prevent it as a parent you just feel helpless. There’s no worse feeling.”
Jack shared their experience in light of International Day of Persons with Disabilities. Celebrated annually on December 3, the day aims to promote the rights and well-being of persons with disabilities in all spheres of society – with this year's theme focusing on transformative solutions for inclusive development.
Wanting to support others in a similar situation to Max – having two sisters with autism – the family created an illustrated rhyming book to help children understand ASD and assist in dealing with the pressures of day-to-day life.
Titled, ‘I’m an Autism Brother What’s Your Superpower’, the story is written from Max’s emotional perspective as he tries to understand his sibling's behaviour. The journey is one of affection and confusion until the character realises autism “is something that should be celebrated”.
Mum Rebecca, a 33-year-old health carer said: “A lot was going on at home and Max was seeing everything that was happening and we just wanted something on his level to help him better understand his feelings. That's when we thought of the idea to write a children's book based on conversations we had with Max.
“Max would just keep his head down and get on with it but he was living through everything too. He told us he felt bad and embarrassed at times and we wanted to help him understand that it was okay to feel how he feels whilst also teaching him that it isn’t Daisy or Jorgie-Rose’s fault.”
The book, published by LMD Publications, can be bought online.
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