At What Cost? The Price of Support
I was desperate for answers to the questions I had. I continued to search for a doctor who would listen.
Waiting for our turn I remember looking at the wooden train in the middle of the waiting room. A small paper sign had been torn in the middle by little feet and hands enjoying the chance to play. Then it was our turn to see the specialist, and my son would not move. If you could picture a koala hanging onto a tree, that was my son hanging onto the steam chute.
I had no real options. My son was stronger than me, and although I was pleading with every bone in my body, I knew that leaving the train and going into that room was going to end in a disaster for everyone.
I could not be seen to be failing here.
I could feel other parents watching. They glanced, some clicked their tongues, some muttered words that I felt to my core:
Bad parent. Out-of-control child.
Tears were welling up, and I was quickly trying to think of a way to make this appointment work. Then we met our doctor. He looked my way and, instead of judgement, I was met with a smile. He approached us at the train, pulled up a chair and said quietly:
“It is okay. We can talk out here if it is easier.”
So, we talked. And for the first time in two years, a health professional started with words that changed everything:
“Failure to Thrive is not a diagnosis. It is a symptom of many systems not working effectively, resulting in your child not growing typically.”
Suddenly, there were answers.
My son did not sleep because he stopped breathing during his sleep cycles. He was woken regularly because of poor airways and enlarged adenoids.
Food refusal was linked to poor facial muscle tone, enlarged adenoids and tonsils. Eating felt like choking.
His speech delay was linked to chronic ear infections and scarring on his eardrums. Being unable to hear limited his ability to copy speech. It was not a reflection of his intelligence.
The labels we had been given did not simply disappear, but our understanding of them changed. For the first time, there was an explanation and there was a treatment plan. For one of the few times on this journey, I felt that I was not failing my child. I was doing something to help him.
There is immense guilt that comes with being a parent of a medically complex child.
Guilt that you did not fight hard enough.
Guilt that you did not look deeper.
Guilt that you did not know how to advocate for your child.
And sometimes, the hardest guilt of all:
Did I do something wrong?
What if I had done this instead?
The what-ifs of this journey can be all consuming.
After various surgeries, we began working with occupational and speech therapists, alongside feeding therapy. These therapies provided strategies and support to help our child with his development. But this came at an immense financial and emotional cost to our family. Due to the cost of therapies, my partner took a job working away. I also returned to work to help pay for the treatment my son needed.
We live in a country where we like to believe that a child's access to healthcare and education should not depend on what their parents can afford. But without privately paying for these appointments, at approximately $190 a session and requiring multiple sessions each week, we would not have had the support we desperately needed in time. We did not want him to be indefinitely behind or unable to achieve. The public waitlists were unacceptable to us as parents.
When your child is:
Not growing.
Not talking.
Not sleeping.
Not eating.
Are you supposed to sit back and wait years for treatment and assistance? The inequality was staggering. I honestly believe that a child's potential should not depend on their postcode or their parents' bank balance. Every child deserves the same opportunity to communicate, learn and thrive. Yet we were stuck in a system where access to support often depended on what you could afford. So, we paid.
But the price was more than money.
It was time spent away from family.
It was relying on family to help care for our children so we could work.
It was pushing through a 10-hour workday on little sleep, then coming home to start shift two - running the household, shopping, washing, cooking and cleaning.
Then doing it all again.
Friendships and big outings became harder to maintain. Social invitations were frequently declined. There was little left to give when caffeine and stress were the fuel carrying us through each day. Yet, I still consider myself and my family fortunate. Somehow, we could pay. That was the part of this journey I could never reconcile.
I often questioned the what-ifs. But now I question the what-happens-to's.
What happens to the child whose parents cannot afford appointments several times a week?
What happens when changing careers or working extra hours is not possible?
What happens when a family does not have extended family to call on?
What happens when there is not a second income?
What happens when there are barriers to information or appointments because English is a second language?
What happens when a family has given everything they can, but the money simply isn't there?
Do those children deserve any less of an opportunity to communicate, learn and thrive?
At the time, I could not stop to think about the injustice of systems or inequality. I was focused on my child. I was exhausted, overwhelmed and scared. I had to keep going. Part of me was convinced that if we just kept pushing, searching, following the advice and following the plan, he would be okay.
So, that is what we did.
Another appointment.
Another therapy session.
Another strategy to practise.
Another goal to achieve.
I measured our progress against the milestones we had been given, and we celebrated the little wins that meant we were a little closer to where he should be. I thought being a good parent meant doing everything in my power to give my child the best chance of success.
To help him reach his full potential. To achieve the standards we had been given.
It would take me much longer to question the cost of that too.
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