For Sydney mother Julie Louden, the “saving grace” of support she received after the birth of daughter Bridie is a gift worth sharing.
Marking World Down Syndrome Day on 21 March, Julie will be there for others, like they were for her, in the days, weeks, and years following Bridie’s birth.
“Bridie was 7 days old when we were abruptly told she had Trisomy 21,” Julie said of Bridie, who’s now 17.
“Fortunately, I had already been put in contact with a social worker due to the traumatic nature of Bridie’s birth and got the number for Down Syndrome NSW.
“They were my support initially. I contacted them whenever I needed to; even just to chat. Bridie had 2 heart surgeries before she was one and there was always someone to talk to who had gone through something similar.
“Now, I’m providing that support to others as a business support manager with Down Syndrome NSW. I’ve been there and know how it feels… that support is 100% important, and it can be the saving grace for parents.”
Sharing her journey and providing support to mothers, family members, carers, or whoever needs advice and guidance, Julie also fields questions around National Disability Insurance Scheme (NDIS) plans.
Fittingly, it was the support Julie received which led the family to an introduction to the NDIS for Bridie.
Turning 18 in August, Bridie uses her NDIS plan to access speech therapy and support work and is building her social and professional capacity.
Whether it’s learning about the magic of makeup, making Tik Toks or hanging out at home, Bridie’s support network assists her to shine and provides extra flexibility for Julie and the family.
“Bridie has become good friends with her speech therapist and support worker, Olivia, which is what we were hoping for,” Julie said.
“She takes her out to the community and picks her up once a week to go shopping and to do things like order food to help her speech in that way.
“They incorporate Tik Toks into speech therapy too. They talk to camera, do makeup videos and all kinds of things, so, it’s a really good thing for her.
“With a bit more independence outside of the family, the support around social activities and things like that allowed me to go back to work also.”
Into the final year of her schooling, Bridie attends a support TAFE class once a week, where she indulges in her love for learning all about makeup, on a path towards landing her “dream job”.
A hoarder who loves anything done with a pen or piece of paper, Bridie also wants to one day work at Officeworks.
For now though, continuing to increase Bridie’s capacity outside the home is a focus for Julie.
“For her to be more socially active is a short-term goal,” Julie said.
“Bridie loves putt putt golf, aqua golf, bowling, going to the movies,” and that type of thing, but where regular kids go to school and then socialise out of school, our girls don’t do that, and it needs to be facilitated by the parents.
“So, I’m hoping to start an exercise and mentor peer support group for girls.”
According to Down Syndrome NSW, about 1 in every 1100 babies born in Australia will have Down syndrome. This means that each year there are about 290 new babies born each year who have the genetic condition.
Wanting to play her part in helping the families of those babies as they navigate their individual journeys, Julie plans on continuing to be just a phone call away.
“It’s powerful to help others. At first people tend to be a bit sheepish, but once they hear about me, the conversation is ‘you’ve been there, and it’s very valuable,” Julie said.
“I found when Bridie was young, the people I spoke to had kids with Down syndrome as well and it felt the same.
“The woman I used to speak with works here still, and she’s been here 18 years. So, it’s kind of gone full circle for me, and now I ’m able to offer my learning and understanding to parents who are exactly where I was 17 years ago.”