A mother convicted of killing her autistic daughter released a harrowing book documenting her daily battles with round-the-clock care, poverty and battles with bureaucracy just a month before the death.
Donella Knox, 49, was sentenced to four years' imprisonment after she admitted murdering her 20-year-old daughter Ruby on May 17 last year at their Blenheim home.
Knox self-published Rubies and Pearls, which graphically describes five years in the lives of the mother and daughter, in April last year.
The confronting, painful and emotional book, which is written in diary form and spans October 2001 to February 2006, speaks of Donella trying to control her "surging rage" and frustrations over repeated attempts to get help and further diagnosis of Ruby's health problems.
It honestly reveals how Donella becomes so frustrated that she has thoughts of "blowing up the hospital" or of taking "serious violent action".
The book also tells how Ruby was a large and difficult child who could not communicate verbally and would headbutt and bite her clearly loving mother.
Its introduction outlines Donella's message.
"Caring for an autistic child is a fulltime commitment - every hour of every day is dictated by the needs only a child who at once is the huge blessing only a child can be, but equally is an albatross dragging you down into the murk of a harsh day-to-day existence," she wrote.
"With the added pressures of tight finances, ongoing health issues and a noticeable lack of support from those agencies that are charged with helping in just these situations, you have a tinderbox of emotions with no easy outlet."
The book begins with a diary entry on October 4, 2001 that graphically outlines her frustration with trying to get specialist help for her daughter.
"When my rage comes I find myself spinning out, surging, the anger comes and I sit on it and sit on it," she writes.
"Trying to keep civil and not burden an old passer-by with my s*** or anger. I feel I have to make myself numb so I don't lose it and spin out of orbit."
A selection of diary entries
Thursday, 22 November 2011:
"Huge deficits with these special children. To begin with being on a benefit is frigging tough; hand to mouth, never mind a freaking kid who needs 24 hour watch. No suitable respite people for her to be looked after. Then there's vehicle maintenance, washing machine maintenance, and a safe living environment so she won't decapitate herself in one foul swing. Clothing that will fit, and be warm and practical etc, footwear that will bend and not trip her up, blah blah blah and at the end of the day all this absolutely consuming responsibility to coordinate, oversee and support my girl and myself is left up to big me."
Saturday, 24 November 2001
"Bad tummy today. Trying to contain Ruby and be creative, but feeling like s***. A frustrated Ruby wipes the plate off the table. I smack her and say, 'Why don't you do something constructive?'. God I feel really mean, horrid. Next thing I hear the piano clunking. This carries on for a while, on and off. So there you go, just had to document that."
Monday, 29 April 2002
"I can't bear to imagine what it must be like for Ruby too often, 'cause it just makes me feel really sad. There's just to much work with a child like her. The emotional drain, constant anxiety ... The only time I really relax is when she's asleep in bed until bingo, it's 7am and she's all go again..."
Wednesday, 26 November 2003
"What the f*** after a while you feel quite ruthless, reckless, I reckon this week if someone suggested an armed robbery, I would be keen, just the thought of not being able to take Ruby to jail if I got caught, I sure they would be open to a double cell, once they realise what it would cost to employ a carer with eyes in the back, front and sides of their head, then there's another thought of a cruel carer, that's what stops me or when I have had thoughts of blowing up the hospital or a certain doctor's car or losing it in the social welfare. I have to keep a serious grip on my surging rage because eyes are always on me."
Tuesday, 2 August 2005
"Who totally doesn't see any need for further neurological investigations.... I've been waiting, waiting patiently. What else could I have done. In reality if I blew something up or took serious violent action, would I get a fair trial, probably not and CYPS may step in or even action a trip over to Ngawhatu [former psychiatric hospital near Nelson], for Ruby and I, never to be seen again."
Tuesday, 9 August 2005
"Nobody is listening. I lose it, cry, become emotional and very angry. Basically, I feel they are f****** me all over again. Four years later, nothing has changed. Left meeting, blind with rage, frustration. I don't have to deal with these bureaucratic a******** anymore."