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Taylor Part 2!

By Shireen, Taylor’s mum (NSW, 2023)

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This is a follow up story written by Shireen Taylor on behalf of her daughter Taylor, whose story TSA first published in 2015. Shireen says, ‘This story is written to give hope to all parents of children with TSC .’

Taylor lives with TSC and has mild to moderate intellectual impairment, anxiety, renal impairment and chronic nerve pain but is otherwise fit and healthy. Recently, Taylor turned 30 and planned her birthday party with all the zest that such an occasion deserves. She enjoyed a night with friends, a band, a cake and dancing – a night she will be able to look back on as life takes her forward.

Taylor has had intractable epilepsy since birth, despite many medications and successful epilepsy surgery in 2014. As a result of the surgery, she developed right-sided paralysis which has slowly resolved and now only affects her when she is fatigued. She manages the chronic nerve pain inherited from the surgery with sport and therapies such as physio, hydro and dancing. Her life is so busy that we cannot keep up with her!

As those who are familiar with her story know, Taylor was a successful athlete. She competed in the Rio Paralympics in 2016, bringing home a silver medal in the long jump and, in 2018, won a bronze medal in the Commonwealth Games for the same event. This was after breaking her foot and having a right kidney partial nephrectomy (due to a large angiomyolipoma). It’s fair to say Taylor has a determination, tenacity and mindset that astound us as her family and often also wears us out.

Two years ago, Taylor set herself 2 goals. She decided she wanted to move out of home and get her driving license. We were very hesitant about both as we know she has behavioural issues, suffers anxiety and can become overwhelmed. But, we set out to help her achieve her aims.

We had an OT assessment and a special assessment for driving which was done over a couple of months. From there we found a driving school that catered to her personality. It took a while to ensure that she was a safe driver and the public was also safe with her on the roads, but I’m glad to say she successfully gained her licence and bought a beautiful car. She is now on her green Ps and doing very well.

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On the home front, we were very proactive and vocal with NDIS in seeking suitable alternative home environments. It was a struggle but we kept fighting and were one of the first to access Independent Living funding through NDIS. Thankfully, it now seems to be a lot easier for people to access this funding.

Taylor now lives somewhat independently in a one-bedroom flat attached to a group home. She rents from the provider and is completely separate from them, using her own support workers to assist her in her day-to-day activities. This gives me assurance that she is safe but also allows her to live like she wants, with her choices. I am pleased to say that, 2 years on, all is going well.

So, what is Taylor’s next goal? She wants to get a job – something she couldn’t even consider before her epilepsy surgery. She is commencing a trial in a coffee shop so, who knows, Barista Taylor may be the next step!

Taylor is doing taekwondo and playing representative soccer for the ParaMatildas. She is also singing, dancing, playing guitar, doing music therapy and hydrotherapy and going to see her favourite band, The Frocks. She packs so much into her days.   

We still have the usual medical appointments. Westmead Hospital in Sydney now has a multidisciplinary TSC Clinic for adults, with all the specialist teams we need to consult under one umbrella, which certainly makes our life a whole lot easier. We feel so blessed to have this great service and only wish that this type of multidisciplinary care was more widely available for other people living with TSC.

Life with Taylor is really good, but it is not all rosy. We still have difficulties managing Taylor’s mental health. Taylor has a very structured way of looking at things and has reasoning skills that can be non-negotiable depending on her mood. So, if we say something is planned, then it has to happen at that time and not be altered. 

Taylor doesn’t like missing out on things and can’t let things go – hence her jam-packed life. She can be very motivated and achieve great things when she is interested but is also very aloof and non-compliant when something is not interesting to her. This is like most people to some degree, but Taylor doesn’t understand that life cannot only be about the things she is interested in. This is where the difficulties come as she becomes frustrated and upset. Of course, Taylor is an adult and can legally make her own decisions and choices, so it can be a very difficult pathway to navigate as her parents and ensure that we have the capacity to meet her demands.  

I’m not sure what lies ahead for us or Taylor but I guess neither does anyone else. Taylor is loved immensely by her family, boyfriend Will and friends, and she has come so far since her surgery in 2014. We can’t wait to see what’s ahead.

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