Hamish (2024)
Written by Kate, Hamish’s mum (VIC, Oct 2024)
This is an update of Hamish’s story which TSA first published in 2014.
‘Having TSC is like walking in a minefield. You get over over one thing and walk right into another. That’s what sets this disorder apart from epilepsy. It’s not just the seizures. It’s not just the brain involvement. It’s everything.’ So said Dr Elizabeth Thule, a world renowned researcher into TSC (Tuberous Sclerosis Complex). This is so true. She could have also added, ‘be prepared for a wild ride and expect the unexpected’!
Hamish turned 18 last August, which was a huge milestone for all of us. In typical TSC fashion he got to spend his 18th birthday having an MRI under general anaesthetic. Two parties and a weekend camp later though I think he had well and truly celebrated his important day. The last few years have had their challenges, but Hamish now is probably the happiest and most fulfilled he’s ever been, thanks to the wonderful people in his life and the opportunities available to him. And, two very naughty cats!
Hamish was diagnosed with TSC when he was just 2 days old. He has global developmental delays, intellectual disability and no formal language, but he is well able to show people what he does and doesn’t want. He also has the face of an angel, an array of very effective communication and charm techniques and is endlessly funny. Whilst Hamish is not technically autistic, he has a few mannerisms which are termed ‘autistic tendencies’. These include the lack of speech and lots of happy flapping. These tendencies are counterbalanced by the fact that he loves attention, will shamelessly charm anyone who grabs his interest, and has a love of socialising. Life with Hamish can be challenging and unpredictable, but I’ve found that maintaining an open mind and trying to see the humour in situations gets me through.
To tell you some of his history. Hamish had drug resistant infantile spasms and seizures from 5 weeks old. When he was 2 years old, he had 4 rounds of neurosurgery at the Royal Children’s Hospital in Melbourne. This didn’t immediately cure his seizures, but by the time he was 3 years old, he was seizure free. Hamish was diagnosed with focal seizures when he was 7 years old, but these also cleared up within a few years. We felt very fortunate and know things could have been so much worse. Amazingly, Hamish then remained free of seizures until he was 16.
From the age of 2, Hamish attended Port Phillip Specialist School in Melbourne. Through early education, primary school and senior years he was surrounded by the most amazing teachers and allied health care professionals. They encouraged him to be himself, celebrated every achievement and even allowed him to paint his face blue one afternoon while his teaching aide gleefully filmed it. He caught the bus to and from school every day and did swimming every week. School was his favourite place and he was thriving.
And then, COVID and seizures both attacked. During the early days of COVID Hamish was unable to attend school. He refused to engage in Zoom calls and really wasn’t capable of doing any of the work sent home every week from school. It was a tough time, especially for Hamish who didn’t understand why he couldn’t just go to his beloved school. The few Zoom calls that we did log into were enthusiastically embraced by Rosie the cat who batted at people and attempted to swipe the screen. Hamish thought this was hilarious but still refused to even look at the screen. Fortunately, thanks to fine print from the Department of Education which said that children who couldn’t learn from home could attend school, Hamish was able to restart at the school and, after a while, life went back to some semblance of normality.
However, TSC had another surprise up its sleeve. During the 2021 lockdown Hamish started having what his neurologist thought were fainting spells due to his rapid growth. My mother’s intuition told me otherwise, but I accepted the diagnosis, while keeping a vigilant eye on him. Then, one morning just before his 16th birthday, I found Hamish in the midst of a status seizure. He’d never had one before, but it what obvious what it was. An ambulance was called and Hamish ended up being intubated in ICU. In typical Hamish fashion, he was fine within 24 hours and set about charming the hospital staff before he was discharged a day later. Two days later though he had another status seizure and ended up in hospital again. Such is the unpredictable nature of TSC and the uncertainty we live with. This time he was put back onto anti-seizure medication. He has remained seizure free ever since, apart from some mild focal seizures. Hamish now hasn’t had a status seizure since 2021 and his neurologist thinks it’s highly unlikely that he’ll have another.
In October 2023 Hamish was offered a place at a wonderful day program not far from home. He started there in January 2025 and he loves it. In retrospect, I think he was well and truly ready to leave school. The day program runs from Monday to Friday and is very community based. The group go for walks most days, engage in the arts and music and visit the local library and gym. Hamish doesn’t always engage with the activities, but he loves being around the other people and observing what they are doing. Just like school, he’s found his place and his tribe, and he is thriving.
The last time I wrote a piece for TSA, I said I’d woken up with Hamish, a cat and a broom in my bed. That was in 2014. These days we have two new cats and I’m glad to say that Hamish no longer brings random objects in for Sunday morning snuggles. Even at 182cm he still loves a cuddle though, as long as he can be the little spoon! Hamish will always, unconditionally be my, ‘little spoon’ and we will always have love and laughter, no matter what TSC throws at us.
