Louise’s story – Advocating to get the best supports for your child

When Louise was 20 weeks pregnant with her daughter Abigail she found out her baby did not have a corpus callosum – a nerve tract in the brain that connects the left and right sides.

The birth defect can lead to developmental delays, poor muscle tone and challenges with coordination, as well as impaired vision and hearing.

Several doctors gave Louise and her husband, Daniel, the option to terminate the pregnancy, telling them the baby had a 10 percent chance of survival past the age of one, but they couldn’t give up the hope of that chance.

Nine years later, Abigail is a happy and healthy member of the family – with an older brother and two younger brothers.

She certainly has made life more exciting for the family.

“It’s been an adventure,” says Louise.

“We’ve had ups and downs over the last nine years, there’s been lots of learnings from my point of view about what the corpus callosum is and what it does.

“The saying is that if you know what a corpus callosum is then you don’t have one, because most people with a corpus callosum can go through life not really caring how their brain actually functions, as long as it’s doing its job, but if you don’t have a corpus callosum then you kind of do care and you need extra support.”

Challenges with milestones

In her short life, Abigail has faced challenges with fine and gross motor skills, forgetfulness, social skills and childhood milestones, but continues to develop with help from therapists and her supportive family.

Louise recalls, “In the beginning she had a paediatrician, and every appointment he’d ask if she was achieving some milestone and I would say ‘no’. It was almost like she heard because she would actually do it the next day – which was kind of frustrating and funny at the same time.”

With the support of therapists and her family, Abigail is thriving and has grown into a chatty young girl who loves her food, loves animals, and is coping well in a mainstream school.

Goals she has set for herself, in particular to learn to run faster and to be any number of professionals when she grows up – from a baker to an athlete, have surprised the family.

For the past three years Abigail has had a National Disability Insurance Scheme (NDIS) plan, which is used to fund occupational therapy, physiotherapy, and anything else that will help her to reach her goals.

Louise is an Occupational Therapist (OT) herself, and even though she has some grounding in how the NDIS works and how to advocate for the children she supports at work, she has found that advocating for her own child requires a new set of skills.

Although the NDIS is a “godsend” for the family, she says it has been a “head fracture” at the same time.

“It took 12 months from when we actually applied to her getting onto the scheme,” says Louise.

“The GP, paediatrician, speech therapist, physio and OT all needed to write reports and then we needed to fill in a lot of forms – which someone else did for me. That was great because at that time I just didn’t have the headspace to do it and a lot of the questions were a bit like, ‘I have no idea what you’re asking’.

“So I found someone else who knew and they helped.”

Learning about support

Over time Louise has learned that “broad and basic” goals in Abigail’s NDIS plan will mean there is more leeway in how the funding can be spent, and that setting goals that are too specific can also make them more difficult to achieve.

Developing relationships between herself, Abigail and the various therapists has also been a learning curve for Louise.

She says a strong connection can make a big difference to the quality of the support because Abigail can be anxious towards strangers and may not engage unless she likes them.

“You’ve got to be happy with who you’re seeing because if you’re not then the therapy isn’t going to go well,” says Louise.

For other parents with a child on the NDIS, Louise suggests shopping around for supports that are best suited to your child, as some supports that can make a big difference may not be obvious at first glance.

She also says it is important while working hard to advocate for your child to remember all of the things they have achieved – as it will give you the energy to keep fighting for them.

“Even when it’s been harder for me I’ve just had to look at the small wins,” explains Louise.

“She wasn’t easy to toilet train, she wasn’t easy to really do anything with. For the first 18 months of her life she clung to me and wouldn’t go to anyone else to settle. So I’ve had to remind myself that she is smashing her goals and reaching milestones.

“It’s been a wild ride, but that’s parenting I think too, even with children who don’t have the delightfulness that Abby does.”

Louise’s biggest piece of advice is to always have hope for your child, because “sometimes the doctors get it wrong”.