When I sit down to write this story, I stare at the empty screen because it is hard to know where and how to start it.
Before I had children, I imagined that when you have a disabled child, the child is born, and the doctors take your child away. They bring him or her back to you and tell you that your child has “such and such” condition. Pamphlets and contact numbers are given. I imagined that you get on with it. Celebrate your child’s unique life and achievements and help them reach their potential.
Unfortunately, my imagination is not reality. Nothing can prepare you for the reality of what it is like! As a parent, I had to learn to negotiate the paths leading to a diagnosis of Autism Spectrum Disorder.
Two years and some months after my son was born we are still struggling to negotiate these paths. How to access the disability grant, formal diagnosis, special schools? How to sustain a career and be there for my son?
I have watched my career, my social life, and my marriage melt away before my eyes. None of them could withstand the sheer intensity of my son’s unique behaviours. The extent of time and money required to somehow try pin the situation down, just to gain an understanding and alleviate his discomfort in this world.
To be more specific, many of the practitioners we saw seemed very reluctant to diagnose my child. It seemed as though labeling him would be a bad thing. I would like to take this opportunity to denounce this practice, when you delay the diagnosis, you delay the child’s access to much needed services like therapy, special education, and grants.
My son has been ‘diagnosed’ for a year. I am still waiting for a doctor to put this in writing. He is not on the low support part of the spectrum. Has serious developmental delays, and behaviours, leading to no less than 8 different care arrangements in 2 years. As a result, I have since lost my job.
There is a ray of sunshine in all of this! Eventually after four different therapists, my son now sees a speech and an occupational therapist. Both with experience in Autism Spectrum Disorder. This has been significant, not only for my son, who has worked through his intense fear of therapists and now enjoys therapy. But also for me, because this is where I gain support, advice and sharing of ideas about my son and autism. I craved this, from the first feeling that something was “not regular” with my child.
My son and I now lead what I internally think of as an “Autism Life”. The house is arranged so that it is safe and user friendly for us. This too, led to the breakdown of our family. When there is a larger family with more children to accommodate, there is resistance, judgement and arguments about arranging life to help the individual with autism.
My son is mysterious, driven, bright and headstrong. I have become someone I could never have imagined. I am now driven to be outspoken and assertive, in the quest to make the best life possible for both him and I, his mom!