We sat down with Julie Fisher and chatted about the change that comes from being a parent-carer to a child with a disability.
How has being a special needs mama changed you?
Julie: My life as a special needs mama began before my son Darcy was born as we received a positive diagnosis of Down syndrome when I was 15 weeks pregnant. My friend Tina was running a fortnightly coffee/support group and I was able to attend as soon as we received the news.
It was wonderful to be able to meet these other mamas and their kids and I could see straight away I was entering a world where the people were there to support and give guidance whenever it was needed. There was no judgement and nothing false about any of them.
By attending this group I was able to see how our world was going to change because we would be accessing therapies and possibly many other appointments once our little man joined our family. So, straight away, I knew things were going to have to change so I could make sure Darcy was able to get everything he needed.
How did your lifestyle change when you became/knew of being a special needs mama
Julie: My lifestyle changed because I was introduced into a whole new world I knew nothing about and it was time to learn. Thankfully these other mamas were more than willing to help and guide me. A whole new world was what we entered into and the people in it were people I really loved…they were my village.
How did your work circumstances change?
Julie: I stopped working full time and didn’t actually worry about what I was going to do for work because Darcy and what he needed, was what I had to focus on. Eventually I was able to get a job in hospitality which was very different for me but worked really well with our family and what was needed for Darcy.
Recently, my employment has changed again and I am now working from home as a publishing assistant for the publishers I wrote my books with. I absolutely love the flexibility of working from home and the people I am meeting because of this role. Very grateful.
What were some of the stark changes you recall, and reflecting on them now, what did it teach you?
Julie: The thing I was not ready for was the advocating that was coming as he grew and this has taught me to never back down and keep fighting for what I know is right. Being a special needs mama has definitely allowed me to find my strength and become much more comfortable standing up and speaking how I knew I should.
I have also learned to definitely never give up and that things can take time, and that’s alright. So patience has become better for me as well.
I’ve learned to see the world through different eyes, being Darcy’s and I love what I see. He is very accepting, honest and all his emotions and feelings are true and unconditional. We may not always like it, depending on the mood, but I love that he is so raw and open.
My lifestyle is busier now than it was, but my time is with Darcy now as my other boys are adults. That’s been some getting used to as well, but I enjoy being able to give more time to Darcy’s needs.
