My 16-year-old younger sister Joey, always keeps us on our toes.
The last time my dad, mum and I tried to go for a meal with her, she kicked the table over within five minutes.
Joey has a rare chromosomal disorder, which means she has learning disabilities, autism and eating issues. I love her, but her behaviour can be really challenging so normal rules don’t apply in our house.
I have grown up knowing that life was different for us.
Things like Joey being taken out of nursery because she required too much attention from the staff, or the fact she has to go to hospital so often – this doesn’t happen to other families. Life can be annoying and a mess, but it is never boring.
Some of the chaos she causes is just pure entertainment.
We went to a pizza restaurant once, where we had a corner table and she kept on looking at things menacingly. But we had such a lockdown on her that she couldn’t get away. At the last second, we relaxed and let our guard down and she ran over to a massive vase and just smashed it on the floor.
Going out as a family is never really relaxing. People do stare at us – I mean, who wouldn’t if someone was tipping over all the knives and forks in a cafe or causing carnage in a shop?
But I don’t think strangers judge Joey. Sometimes people look like they are about to get angry but then they clock that she is disabled, so they understand they can’t hold her to their standards.
When I was 13, my parents wrote a TV comedy called There She Goes about Joey – who was 11 at the time – and the impact her condition has on our family. It was then made into a series by the BBC in 2018.
I can’t lie, it was weird to see our lives dramatised on a national TV channel.
David Tennant played my dad, Shaun, (or a character called Simon), Jessica Hynes played my mum Sarah (Emily), Miley Locke played Rosie (who is Joey) and Edan Hayhurst played Ben – me.
Of course, my parents asked my permission to write it and I have no regrets about that. But if I’m honest, I wasn’t too into it at the time – Dad’s a writer for lots of TV comedy shows so I thought he would concentrate on the funny bits of our life.
For example, our family has definite rules. The most important one is to not mess with Joey when she’s not making her high-pitched whinging noise. It means there’s a moment of calm.
Number two is: Don’t break the telly. Don’t break it yourself and also stop Joey breaking it too.
Once, when we were watching TV, she came in with a shoe and just randomly threw it at the telly. At any moment, she can just decide to damage it. Lots of valuable things have to be hidden away. The placement of items in our house is very particular.
Rule three is to never lose Hippo. It’s a cuddly toy and sacred to the family, so of course he gets mentioned a lot in There She Goes. Occasionally, Joey is cruel to Hippo and dismembers him, so we’ve had to repair him in ‘Hippo Hospital’. She has multiple hippos but there’s a hierarchy. All of the hippos at some point seem to get destroyed.
They stopped making her favourite hippo ages ago, so we’ve had to buy more and more ‘sub-hippos’, which she values to various degrees. You have to be extra sure to keep her favourite safe. She doesn’t appreciate the supply and demand of markets – if her favourite toy stops being made, she doesn’t understand.
It’s great to see our family’s eccentricities represented on the show, but I didn’t comprehend quite how personal There She Goes would be.
I didn’t expect Mum and Dad to include so many emotional scenes – I thought Dad would just pick the funny ones, like finding himself using Makaton sign language to sign ‘Hippo’ to a policeman who was investigating whether Joey had been abducted because Mum and Dad had been seen dragging her into the house.
The policeman had unexpectedly started using sign language to ask Joey, who is non-verbal, questions, and Dad was trying to show he knew Makaton too.
When I first watched it, I realised they’d balanced the funny with the really emotional and difficult moments.
There are some lines in the early episodes that my character says that are really cringe. It’s clearly my dad trying to write as a teenager. I wish I’d edited some of those, but this is not a show about me – it’s a show about Joey.
Loads of families in our situation recognised their own lives in the show. They responded so strongly to our story and Joey’s life kept creating so many stories that Mum and Dad wrote a second series.
Jessica Hynes won a BAFTA Award for Best Actress in a Comedy Programme.
Now six years since Mum and Dad wrote the first series – a one-off special episode will be shown on BBC One (June 21), which also happens to be Learning Disabilities Week.
One of the most difficult scenes of the special sees Rosie pulling her own hair out in anger and her dad, Simon, trying to pin her arms down to stop her self-harming – while all of the family are in tears. There was a phase when that happened a lot in our house.
There are 1.3million children with disabilities in the UK – that’s a lot of brothers and sisters who are in my position. According to a Disabled Children’s Partnership March 2023 survey of 2,200 families, 69% of siblings have high anxiety and 67% have high isolation levels – compared to the national average – as a result of lack of support. More than half have increased their caring duties since the pandemic.
That makes me feel that it’s important that siblings – as well as other family members – get talked about in these situations.
I do understand that quite often I have to come second to my sister, but it’s not favouritism or being undervalued. I’ve always understood that it just has to be like that.
I don’t feel I’ve missed out on anything and there are definite advantages – who else gets to relive their early teens through a TV show?
If I were to share advice to other siblings of children with severe learning disabilities, I would say: No matter how annoying your brother or sister gets, don’t worry, just do what you have to do.
There is one scene in the new episode where David Tennant and Jessica Hynes are discussing Rosie’s future. My character Ben says: ‘You don’t need to worry about that, she can live with me.’
My parents say they will make sure plans are in place for Joey if anything happens to them but I really mean it – that is absolutely how I feel.
There She Goes is on BBC ONE on June 21 at 9pm. If you are a sibling who needs support, go to: sibs.org.uk
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