Quite recently, the clinic where my daughter has 2 of the 3 therapies she does per week (speech, physio, occupational therapy) decided to increase their prices.
Despite they were already charging 60 minutes for a 50-minutes session, they now had decided to charge an extra 15 minutes for clinical notes.
Which means that, for 50 minutes of actual session, we would now have to pay 75 minutes.
It was a decision imposed on us with less than a week of notice and I was very upset.
I had recently been diagnosed with acute stress disorder (basically carer’s burnout), I was still juggling with many other changes in our daughter’s life and now I was facing an unnecessary, unexpected issue from a place that I considered part of our consolidated routine.
I was at a crossroads.
Should I leave and go through all the stress of finding new therapies all over again, getting initial assessments, waste weeks of sessions to allow them to connect with my daughter?
Should I just stay instead and see that, for every 4 sessions of therapy, we lose 1 session in extra charges that are not actually adding anything to our girl’s treatments?
Either way, I lose. My baby loses.
That morning I was driving her to therapies and I was in tears: I didn’t want to go, I was so upset with them that I wanted to get there and yell at them for making my girl’s disability journey all about money.
And yet I knew that instead I would have kept a straight face, smiled at the therapists, and then spent at least an hour to write a very polite email to the management.
I was overwhelmed and so frustrated.
We leave home, the radio on my car starts playing and what are they playing? The Blue Danube, by Johann Strauss.
Suddenly, magic.
You see, my mum taught me to dance waltz on the lovely notes of the Blue Danube. It was our tradition: every 1st of the year on a major Italian TV channel they were broadcasting the Concerto di Capodanno, a concert for the first of January, and they would always play The Blue Danube.
It doesn’t matter if my mum was crazy busy in the kitchen: once The Blue Danube was playing my mum would stop cooking, we would stop preparing the table and my mum and I, along with my sisters, would all dance a waltz together. That was our thing!
And it doesn’t matter to me if it’s going to sound cheesy, or if some of you will think that I’m superstitious.
To me, that music, in that car, right when I was at my rock bottom, was a clear sign from my mum that she’s with me, always.
I miss her so much, even though we lost her many, many years ago.
She has missed so many milestones of my life, from my master’s degree graduation, to my wedding, and now my beautiful daughter.
That music was a sign from her: she found a way to tell me that she’s on my side and, mum to mum, she’s rooting for me.
And Bibi’s reaction confirmed that that moment was magical: normally, if I don’t play her baby dance immediately, once we get in the car, she starts screaming until I put her music on.
Well, somehow, that morning she was enchanted, she didn’t make a single sound, and she allowed me to listen to the radio and to sing along for the whole duration of The Blue Danube.
After that, I couldn’t stop smiling!
My mum was with me and my daughter allowed me to savour that connection that some of you might describe as a coincidence and that instead I describe as supernatural.
My mum was strong, she was a fighter and if she was with us, today, she would certainly tell me: “Toughen up, sweetheart. You got this!”.
Yeah, yes I do.
For those who are wondering, no: I decided not to allow a centre to charge me more than what’s reasonable, for the same service.
If they can’t see the value of working together with special needs families to give to their children the support they deserve, within the very generous fees stated by NDIS, well then, they are not our tribe, they’re not the right fit for us and for our values.
I can choose, and I will not stay silent.
My mum taught me better than that.
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