Support, guidance & advice for todays primary carers
Julie Fisher is a 50-year-old mother of four and author from Langwarrin Victoria. She would never have expected the journey she would go on when her son Darcy was diagnosed with Down syndrome in 2006.
Tough as it was when Julie found out that Darcy has Down Syndrome, she was determined to learn how she could provide the best care possible for her son.
Now 15 years old, Darcy is a very happy, active teenage boy. He loves to dance, play basketball and football and go bowling. However, Darcy still requires assistance with everyday self-care tasks including brushing his teeth, bathing and going to the toilet. Darcy’s sensory issues around food also mean that Julie must assist him at mealtimes.
Despite caring for Darcy around the clock, Julie struggles to think of herself as a carer. The way she sees it, she does what she can so her son can experience everything that his brothers have.
Julie said, “It’s taken me a long time to identify myself as a carer. As a parent, I think it is a bit strange identifying as a carer, because when your children are young, it’s natural to care for your kids in every way possible. I only really started to feel like a carer when we attended early intervention sessions for Darcy, and when we had many hospital visits to eradicate the fluid in his lungs so he could breathe properly. It was a scary time.
“Being a carer means that I do have to make extra considerations for my son that most parents never have to think about for 15-year-olds. I have to help Darcy bathe, brush his teeth, put on socks and shoes, climb up and down stairs. He also needs my support with going to the toilet. This means I am his guide, teacher, advocate, voice, defender and his mum, all at the same time.”
Having had a thorough reflection on her journey as a carer while writing her first book, titled The Unexpected Journey, Julie understands what it means to love and care for someone with a disability. She describes the unspoken contribution unpaid family and friend carers are making to society as profoundly impactful.
Julie is incredibly proud of her son and everything he has accomplished. “Watching him enjoy life and the things we do with him is a true motivator. He is an amazing little boy who gets so much enjoyment from accomplishing things he’s been trying to do. I get an overwhelming sense of pride and joy watching this young man blossom.”
Julie understands first-hand the support that’s needed for not only her son but for herself and other carers. She stresses that Carers Victoria has played an instrumental role in her life. They have been instrumental in providing advice, assistance and most importantly a support network.
“To me, the support network is vital. I think it is so helpful to have connections with other people going on the same journey as you. Much like a group for first mums, when you first start having your family, it’s crucial on many different levels, be it advice, a shoulder to cry on, days out together.”
Julie’s second book The Magic of Inclusion is released this month. To find out how you can secure your copy visit www.facebook.com/theunexpectedjourneybook
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