The Story of
Charlie-Rose
"I will do everything in my power to ensure she receives the best possible life".
Our extraordinary journey with Charlie-Rose began when she was just a bright-eyed 15-month-old. Filled with concern about her development, I reached out to a public health nurse, hoping to find some answers.
Together, we attended an appointment, but alas, the nurse wasn't initially convinced of my worries. However, I was determined and adamant, refusing to let my concerns be brushed aside. Finally, she agreed to send Charlie-Rose to a community doctor, who then referred her for so called ‘early intervention’ and Assessment of Need (AON).
This significant turning point occurred back in 2020, and little did I know the daunting battle that awaited us on the road ahead.
At that time, Charlie-Rose was already receiving primary care physiotherapy for other issues. But the moment she joined the early intervention program, the primary care physiotherapist had to discharge her, even though she still required ongoing therapy.
Unfortunately, to this day, Charlie-Rose hasn't received any further physiotherapy.
It's been a frustrating situation, to say the least.
When Charlie-Rose turned two years old, we decided to seek a private diagnosis, which confirmed what we had suspected: autism spectrum disorder (ASD).
However, it wasn't until June 2021 that she received a preliminary assessment through the public service. Soon after, these assessments were deemed invalid, and a reassessment was demanded.
We found ourselves facing an uphill battle to secure the reassessment our daughter needed.
Finally, this June, two long years after the initial assessment, Charlie-Rose underwent a full multidisciplinary assessment.
Getting to this point was anything but easy, requiring relentless determination and unwavering perseverance.
Sadly, the Children's Disability Network Team (CDNT), formerly known as the early intervention service, has yet to provide any services to Charlie-Rose.
Like many others in similar situations, we've had to turn to private therapies for support.
Additionally, I had to make the difficult decision to give up my job and become Charlie-Rose's full-time caregiver.
This choice has undoubtedly impacted our family income, especially considering the rising cost of living and the persistent wave of inflation.
Charlie-Rose has already endured nearly three years of waiting for services, and we've recently been informed that she might have to wait another six years before receiving therapies through the CDNT.
This means she would be ten years old by the time she finally gets the support she so desperately needs.
This journey has been nothing short of exhausting and mentally draining.
There are moments when I feel like I'm drowning in it all.
However, amidst the struggle, I've been fortunate enough to encounter some incredible individuals who have become my lifeline.
Amazing friends and fellow parents facing similar challenges have offered invaluable support and guidance, making this wild ride a little more bearable.
As Eli's mam shared in her own story, what I've described here is just a fraction of the hurdles we've faced and the tribulations we've endured.
The hours spent filling out endless forms and applications, the countless ring binders cluttering our home, housing every piece of documentation imaginable—this has become our life. It's a 24/7 commitment, a never-ending cycle of worry, phone calls, emails, and appointments that seem to consume every waking moment.
Now, our newest challenge lies in securing a suitable school placement for Charlie-Rose in the coming year.
It's another obstacle that requires careful navigation and determination.
Despite all the hardships, I want you to know that Charlie-Rose, my smart, funny, lovable, and sassy four-year-old, is an absolute delight.
Anyone fortunate enough to know her has experienced the overflowing love she shares.
Her confidence is astounding, and her personality shines brilliantly.
I consider myself incredibly lucky to be her mammy, and I will do everything in my power to ensure she receives the best possible life.
A Big Thank You
to Charlie-Rose, Charlie-Rose's Mammy and Family, for their story.
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