‘The birth of Felix pivoted my life in the most extraordinary way imaginable. It redefined my image of what motherhood would be.’
Clare Waiss (pictured below) is talking about her son and gave us this insight when we caught up with her over the phone from Sydney, where Felix goes for regular intensive therapy.
As a parent to a child with a disability and a neuro-typical daughter, a wife, a business owner and disability advocate, Clare is one of the Tasmanians we’re recognising and celebrating this International Women’s Day.
Clare’s message is one of hope for equality, for people with disability and for women.
Immediately after Felix was born, Clare thought he was doing well, but as the months went on, it was clear he was not meeting milestones as expected.
At nine months old, Felix was diagnosed with hyperplasia of the corpus collosum, which Clare explained meant part of Felix’s brain that connects the right and left side did not form.
Felix, who will soon turn four, has just learnt to crawl and is learning how to feed himself. Right now he can’t stand or walk independently and is non-verbal.
‘He gives lots of kisses and cuddles, but it is challenging at times to know what is wrong when he’s upset.’
To help Felix be his best, Clare is often in Sydney, away from her husband, her daughter and her home in northern Tasmania. For three weeks at a time – 60 hours of therapy over five days a week – occupational therapy, physiotherapy and speech therapy.
Like many women, Clare wanted to get back to work when Felix was around one.
‘My first barrier to returning to work was finding suitable childcare that could support my son in a safe environment so he could thrive.
‘But doors closed,’ Clare explained.
‘They (childcare centres) say they don’t discriminate because of disability, but they didn’t want to have that extra burden.’
Clare eventually found one centre that could support Felix, with the addition of Inclusion Support Program funding through the Federal Government – something Clare found out about herself.
‘None of this information is easy to find. Why doesn’t everybody know about this?’, Clare questioned.
‘Often, it’s the mother who takes on the role of primary carer for the disabled child. Affordable quality childcare for all children is imperative to allowing women to return to the work force if she chooses to.’
Returning to the same job didn’t work out for Clare and her family.
‘Previously I worked for a mining company in the logistics space. Whilst I loved the role and the company I worked for was very supportive, it became very challenging to juggle full time work with the additional demands parenting a disabled child brings.
‘Trying to schedule multiple weekly therapy appointments along with all the illness that comes with kids in childcare, whilst navigating the NDIS and disability space was overwhelming’, Clare added.
So, in another change, Clare started her own business, to help other families with their NDIS plan management and coordination.
‘I talk to so many parents about their struggles. Now I help them to get adequate funding and support from the NDIS.’
‘Five years ago, I never would have imagined I would have left my chosen career to start my own business from my kitchen table to support my family. COVID has helped pave the way for more women to successfully have a career outside of the perceived normal Monday to Friday 9 – 5. I now have the flexibility to support my son and my family as needed and don’t have to choose between either.’
L-R above: Lily, Clare, Mark and Felix Waiss
Choosing some time for herself is important too. Clare finds solace in swimming and gardening and catching up with friends.
Clare’s thankful for finding activities Felix can do. After thinking he probably wouldn’t play sport, he tried frame running for the first time with ParaQuad Tasmania last year.
‘That was the very first time Felix had run. I was so stunned he instantly knew what to do – he loved every minute of it.’
Now, when they’re in Sydney, Clare and Felix head to frame running and frame soccer events.
‘When at frame running, he’s around like-minded people and that’s so important. He sees other people who have similar abilities.’
Equality of opportunity for people with a disability and gender equality are issues that Clare is passionate about.
‘For the sake of my daughter Lily and all women, present and future, we need consistent, dynamic advocacy for gender equality in the workforce and life in general.
‘I would love to see Felix and the disability community have access to the same opportunities afforded to able bodied persons.
‘It hasn’t been easy at times but I’m so proud to be advocating and improving the lives of persons living with a disability and their families.’
We’re sure many people are proud of Clare too.
