As if life isn’t difficult enough navigating Melbourne’s ongoing lockdown while managing her multiple sclerosis, Jenny Pierce is also the prime carer for her adult children who are all on the autism spectrum.
“It certainly makes for a busy and interesting family life, especially as my MS is progressing and causing cognitive and psychosocial impacts as well as general exhaustion,” Jenny says.
She has lived with the chronic autoimmune condition since she was diagnosed in 2007 and, along with her children, is now a participant in the NDIS.
“The NDIS has given us a chance to catch our breath as a family,” Jenny says. “Until the lockdown happened my husband Cliff was also often away with work, but thankfully he has a new role in Melbourne which means he is much more present.”
Jenny and her husband live in the south-east suburb of Wantirna with their children Sam, Tim, Ben and Reanna. Each family member on the NDIS is plan managed separately and the NDIS also funds a Support Coordinator to look after the family and ensure their separate needs are met.
Of the four siblings, Ben is the most impacted by autism and was also the first to be diagnosed after Jenny noticed changes in his behaviour following a severe illness when he was just 15 months old.
“It was like the lights went out and he suddenly stopped talking, then screamed for five months solid,” she says. “Ben received early intervention, however it was only when he discovered the online game World of Warcraft at around eight years of age that his speech skills came back.
“There was something about the game’s role play and the ability to take on different characters that really worked for him, and to this day he loves dressing up and putting on voices.”
Since joining the NDIS in 2017 life has literally been coming along in leaps and bounds for Ben, who is now 26. Come rain or shine, for the past 18 months Ben has taken to the streets almost every morning with dogs from the local animal shelter where he is a valued volunteer.
“Ben sees dog walking as his job and enjoys it enormously,” Jenny says. “The shelter has supplied him with a uniform and provided a work permit, which he has to carry with him at all times ‘on the job’, and he has a support worker to accompany him.
“He’s been able to keep doing the dog walking right through the COVID lockdown and it’s been great for skills development, which might seem a funny thing to say about dog walking but it’s helped him learn how to schedule time, to keep a routine and to meet expectations.”
Ben is also a keen cook and was due to start a TAFE Certificate III hospitality course before the pandemic hit.
“He cooks for the family twice a week and especially enjoys using Hello Fresh kits, which he orders online and then follows the recipes,” Jenny says.
“He reads and spells really well so for him a mainstream job in food preparation at a café or restaurant is a very realistic proposition once he completes his training.”