The silent victims of disability issues
STEPHEN DE JONGE
Do New Zealanders accept difference?
I am the parent of an intellectually-disabled female teenager, the youngest of three children.
For any man who has got custody of their children after a marriage breakup, congratulations! You are one of the few males in New Zealand who has fought the system and won. Double so if your child is disabled.
I took over the full time care of my daughter, who was diagnosed with global developmental delay (GDD), and it wasn't until later years (10 years old) that a final diagnosis was made of attention deficit hyperactive disorder (ADHD), autistic spectrum disorder (ASD), intellectual disability (ID) and right hemiplegia. The scoliosis and seizure disorders developed in later years.
My eldest son was diagnosed with aspergers at 6 years old and was IQ tested at 139. Wedged in the middle is my other son.
Trying to wear three different parenting hats is the most challenging part. Each takes a unique set of skills no parenting book can ever teach. Mistakes are made and regrets are many.
Time and energy are so short as everything is put into the most vulnerable, often at the expense of your other children. They are the silent victims of disability issues.
I am proud to say that my daughter is stable, medicated properly, well loved and has developed an amazing sense of empathy and caring towards other people, from all walks of life, and animals.
She is a simple being with the soul of an angel. Hers is a world filled with the belief that fish talk because their mouths move, and wearing sunglasses inside on a cloudy day “keeps my eyes warm”.
We can learn a lot from people like her and celebrate the simple things in life.
I often ask myself am I good parent? Am I doing enough to make her life a good, meaningful, joyous one? I usually tell myself I am doing the best I can in a difficult situation that no parent ever anticipated when they wanted children.
Most parents never stop to think that the joy of their life could quite simply drown in the bath one day and be disabled for the rest of their lives. My child was simply born this way. Something you learn to accept and move on with.
I am a realist and am very well aware that my child will not achieve everyday things that the able bodied community take for granted.
She will never get married, travel, get a drivers license, get a qualification, have a career, go to a staff party, take up sport, own her own home, write a simple word or read a child’s book.
She is in the 1 per cent of society who are the most vulnerable and who has the cognition of a 3-5-year-old. She will never be able to make informed consent with decisions that we all take for granted and as a right.
This is my child.
I choose to believe New Zealand is an inclusive society based on experiences, and most people are accepting and open to difference.
To the person who sold chocolate door to door and offered my child a free bar, thank you for your simple gesture. That means so much to us.
But, as always, there are exceptions to the rules.
Be it the person who treats my child as contagious or the teenager who taunts her at the gate by calling her retard.
To you I say, look around you and get to understand to causes of disability and you will see a rainbow of causes. One day you could be one of us, and to you we would say: "Welcome to our community, how can we support you?"
This is who we are.
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