Curiouser and curiouser, said Alice. Are we all mad here? Hell yeah, I am positively certifiable. There have been so many instances throughout my life when I considered myself down at the bottom of a Rabbit Hole. My childhood was chaotic and I married very young to escape my Mum. I was abused by her, she was abused by her mother, my grandmother was abused by her father. I vowed that the buck would stop with me; that I would be a fabulous Mum and my children would feel loved and cherished. And that they would have the best lives possible.
As I muddled my way through my version of motherhood over the last three and a half decades, I wandered up Wonderland's garden path on more than the odd occasion. I have wrestled with uncertainty and guilt and listened to more than my fair share of "specialists" (DRINK ME! EAT ME!) when perhaps I should have been more skeptical of their opinions and more sure of my own.
But what did I think I knew?! After all, I was only the bloody parent!
My boys had Rapid Transit (otherwise known as "peas and carrots syndrome" for obvious reasons) throughout babyhood, toodlerhood and early childhood. The problem resolved once they were toilet trained and developed a wider diet. Yet a naturopath decided Callum was allergic to just about every food group, his diet was severely restricted and he fell off the bottom of the weight chart for his age. Our GP was furious and instructed me to let Cal eat whatever he wanted.
And toilet training. Every man and his dog had their opinion of toilet training. Callum toilet trained himself at daycare over the course of one session, once he wasn't being hassled by all and sundry. Alex was a bit more complicated - he had to watch the piddling process to put two and two together. The penny dropped for him once he saw the connection between the sensation and the actual peeing.
Bullying. My pet hate. I seriously wanted to harm those who bullied my children. The rage would rise inside me, particularly when the inevitable minimisation was launched by those in authority. As a result, much of Callum's school-life was miserable and the sunny, eager, social boy only re-emerged fully when he went to uni or when he was dancing.
I officially complained to the Education Department when Alex was openly discriminated against by a long-standing music teacher at his primary school. No action was taken. So, he moved to another school with a more caring ethos that I headhunted with the help of school psychologists.
At least high school was successful for Alex, as I stuck to my guns that he would flourish in mainstream education. With a superb team of Education Assistants, a proactive principal and practical teachers, Alex achieved his WACE (WA Certificate of Education) at the conclusion of Year 12.
But, most of my energy, innate knowledge, instincts and perseverance were all sorely tested by the long journey Alex and I undertook for most of his life. We understood that Alex would be born with Tricuspid Atresia, a complex right sided heart defect with some similarities to Christopher, my baby who lived for forty-eight days in 1987. What I didn't realise was that that was only the beginning. I was to be disbelieved, ignored, belittled and doubted - there was even a suggestion that I had Munchausen by Proxy disorder when Alex was very young. Insult after insult from all those who should have listened to me.
I voiced my concern that Alex had suffered a stroke during or after cardiac surgery when he was seventeen months old. I had been told there was a risk of this occurrence. My opinion was never acted upon. Thirty years later, we have discovered that Alex has a significant Acquired Brain Injury (ABI).
The speech pathology department that never recognised Alex had no gestures - a key indicator for Autism.
The clinical psychologist who diagnosed Alex with an intellectual disability. Which he doesn't have. This falsehood reared its ugly head again after he left school. Alex has normal intelligence.
The five sets of grommets that caused permanent perforations in his eardrums. The grafts that needed to be inserted to fix this preventable result.
The endless process of understanding jargon, learning new definitions and arguing our case in a variety of settings that are not user friendly.
The exhausting, bewildering and time-consuming dance with the National Disability Insurance Agency. The total frustration of dealing with staff inadequacy, lack of communication and downright laziness. The ongoing emails, meetings and phone calls.
I finally think I may be emerging from the Rabbit Hole. A complaint to the Minister's office appears to be having a positive effect. Alex has a competent and intelligent Local Area Coordinator, a Speech Pathologist, an Occupational Therapist and a Therapy Assistant. He has a wonderful Support Worker on Saturdays and supervision at work. The only uncertainty at the moment is his new Support Coordinator, who begins next week. This will be his third in two years. Disability agencies have a turnover rate that is unhelpful to their clients and the issue needs to be addressed.
The confirmation of Alex's ABI should have given me some satisfaction. The intensive neurological assessment has outlined Alex's strengths and his challenges. Most recently, a review by the Acquired Brain Injury Rehabilitation Medicine Outpatient Clinic (now that's a mouthful) has confirmed the extent of Alex's ABI and that he will need lifelong support. The combination of Autism and his ABI has caused significant deficits in his Executive Functioning, which has consequences for the entirety of his life.
(The phrase “executive function” refers to a set of skills. These skills underlie the capacity to plan ahead and meet goals, display self-control, follow multiple-step directions even when interrupted, and stay focused despite distractions, among others.
Much like an air traffic control system at an airport helps planes on different runways land and take off safely, executive function skills help our brains prioritize tasks, filter distractions, and control impulses.)
I wonder about the "what ifs" that may have happened if I had been believed all those years ago. And there is still the ongoing battle to receive information and reports concerning Alex in a timely manner. I struggle to convince some of the Grand Pooh-bahs and their minions that I am worthy enough to not have to ask repeatedly for correspondence to just be forwarded to me. Every time.
Alex is important. I am important.
An explanation of Autism. Each person has their own brand...
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