Alexandra was born with multiple physical health defects in 2006.
She has survived over 30 general anaesthetics, including at least 10 operations. She was under the care of more than 10 specialists, whose area of expertise ranged from Cardiology, ENT and Gastroenterology, to Respiratory, sleep medicine, Neurology, Genetics, Paediatrics and Orthopaedics.
All before the age of three.
Alex was slow to meet her milestones, sitting at 18 months and walking just before her second birthday. Doctors referred to her development as ‘globally delayed’ (or global developmental disorder), meaning she was behind across all forms of age relevant development. From early on, it was easy to see how strong willed Alex was; always making her intentions clear despite not speaking until she was five years old.
By the time she was looking towards schooling, Alex still did not have a diagnosis to explain the breadth of her health and developmental issues. Her many doctors were sure that there was an underlying genetic diagnosis waiting to be found, but were unsure if it would ever be realised despite numerous rounds of genetic testing.
At age four, I discussed schooling options with Alex’s paediatrician (who was a locum at our local hospital) and he suggested that Autism would be a possible explanation for Alex’s health concerns, but until her genetic diagnosis was established he didn’t want to go down that path. It made sense that, although Alex’s behaviours fit ASD, it would be better to wait and see if her behaviours and her medical issues fit together to form a syndrome of sorts.
As school approached, and we were still in the dark, Alex’s paediatrician again broached the possible diagnosis of Autism. We decided as a family that it was the diagnosis we wanted to explore to ensure Alex received the best opportunities to grow at school.
Alex was assessed by a speech pathologist, child psychologist and an occupational therapist who all believed that Alex fit on the Autism spectrum. With severe delays in speech, gross and fine motor and social skills and borderline intellectual impairment, she appeared to present very clearly as an Autistic child.