A – IN THE BEGINNING

(written 2006 to attempt to get a decent day placement for her)

Kathryn, my third child, was born in Brisbane, with an active toxoplasmotic infection, caught in utero, which nearly killed her.

Once she was medically stable at about 6 weeks of age, a scan was done of her healing brain, and then it was determined that she would be at least massively cerebrally palsied, massively epileptic, deaf, blind and profoundly intellectually impaired.

I was to take her home and to live every day as it came, to never expect anything of her, and basically to wait it out till she expired.

Well, this woman was not a quitter. As I had been an acupuncturist and teacher of healers for a decade before this, and had had a lot of ‘hopeless cases’ change course in my clinic, having a ‘patient’ full time, as my newborn, was possibly not as traumatic as she would have been for the average mother. I at least knew that there were more answers out there than only those espoused through the dominant medical filters.

Whether it was said or not, I heard in the hospital that day ‘nothing MEDICAL’ can be done.

Most parents may have been stopped by the ‘nothing CAN be done”. I set about finding resources, as it was obvious that a broken brain and miswired neurological system was not in the book of ‘fixables’ for those with anything like a ‘medical’ framework.

Besides trying to keep her alive, the practicalities of trying to breastfeed and care for a non responsive flaccid baby in a coma were daunting. As we covered milestones –

  • Winning against all the interesting diseases she picked up.
  • Finding and then starting her on an intensive neurological stimulation programme –
  • Having her begin to move (before no head/neck control),
  • Start to see (from having been cortically blind),
  • Having her walk (at 13 months, which as the first 3 months were spent almost dying, then in deep drug stupor, translates to 10 months), and
  • Have her start to need us (massive autism was not diagnosable from a brain scan), all took their toll on all of us.

Kathryn’s life was a blur of activity, as volunteers came and went, and as she and I crawled, rolled, climbed stairs, somersaulted and patterned all of every waking moment.

All of this was fought for, nothing just arrived as a blueprint would have it in a normal kid, (her without the massive brain insult) and everything had hidden difficulties. It was wonderful that she could walk – but she had no reflexes – if she tripped, she went down like a felled tree – no arms out to protect eyes/teeth etc.

Time passed.

Her dad left when she was three years old.

We had another child, nearly three years older, and I also had another son from a previous marriage, eleven years older than his sister, so single motherhood there in a country where no family were, (all back in Christchurch) proved tricky.

Most lives and marriages get messy under the strain of a massively damaged family member.

More time passed, and I became accidentally pregnant at the end of a relationship, when nearly 40 years old.

As Kathryn was looking like she might die, with violent seizures at this time, I did not think that I could handle (mothers, especially pregnant ones tend to be emotional) aborting a baby, then having my very special, much beloved daughter die, so I chose to continue the pregnancy.

Kathryn did not die, but became vastly more stable when we all moved back here to Chch out of the heat and humidity of Brisbane, which were sparking off some very interesting seizures in her.

More time passed and I left her in Christchurch, whilst attempting to make a go of it with the baby’s father back in Brisbane. Of course this did not work.

This information is being included, as Kathryn and her care is not to be taken in isolation to the story of her mother and her three brothers.

We also have an extended family that completely shuns any mention of my daughter’s existence.

Possibly in an ideal society things would be different.

For her, and her mother:

  • no family support at any time.
  • No contact with her father since she was three years old.
  • Government funding and resources commensurate with watering and tending pot plants.
  • Kathryn is highly autistic.

This handicap seems to have stopped the apparently miraculous progress I made for her in her earlier years.

Massive brain injury is easier than autism to ‘fix’. A

ll the possible interventions I could access I somehow funded and all made considerable improvements in her functioning.

Looking at the walking milestone at 13 months – and as she was in a coma for her first three months – that is a testament to the Doman programme and a very tenacious and persistent mother. She is highly mobile.

Kathryn has receptive language skills at an unassessible level – maybe early toddler level – and does not speak, but can get her needs understood.

She refuses to be toilet trained.

All of the time a special school – for nearly ten years – they spent doing behaviour programmes in this – really she is very stubborn, and I suspect had her specific sensory (highly tactile defensive – so anything damp is abhorred) challenges been addressed as really important, rather than side issues, she may have surprised everyone with what she still has retained from her earlier life, where vast resources were poured into her.

Kathryn’s biggest handicap is that she is not understood.

She is highly sensorially disturbed. This is a neurologically triggered occurrence due to a variety of chemical and inner brain biochemistry imbalances.

She is treated everywhere – except at the last special school – where she was only there a year – and with her carer – at best, as a person with a collection of difficult behaviours.

My daughter has no place in our world, except through the bridges that are built slowly and respectfully to include her. She is soon to lose both of these ‘safer’ areas in her life.

She will be 20 in November. Meaning that the extra funding assistance for respite as home help for her carer Patricia – a saint – will cease. This will mean that the stability and peace that she has known, the mother than she has (yes, I know 20 year olds, leave home, but my daughter has NOT ‘grown up’ emotionally, and will possibly only ever be where she is currently within herself), and has had for nearly six years, will leave her.

This is a major issue as Kathryn is at present ‘tamed’ in the context of not being feral. Those who think that I am being catastrophic, have not been her mother, do not know her and have no doubt little experience with highly autistic people. Change completely freaks them out. Whilst Kathryn is happy to go anywhere with Patricia, it is because Patricia is her bridge out to the rest of us. Patricia is like the touchstone. Patricia is serving one of the roles I did for her first eight years.

None of this is taken into account, when I am told to go and find a residential placement for her.

  • Where exactly is there room for someone who needs to be outside, and moving?
  • Where is there space for her trampoline?
  • Where is the quiet spot for her to retreat to? (Not everyone looks at, let alone handles the background noise and static of a TV going).
  • Where is her communication bridge –the staff change every day, not just in shift, but who is where – and
  • Where is the individual programme to assist her to gradually gain the life skills?
  • Where is there that actually is tailored for her – was this not the idea in leaving institutions behind?

To speak of a ‘vocational’ placement – well besides The Chris Ruth Centre, all the ones I saw were glorified Templeton look-alikes.
So where are the facilities that Templeton was closed down, for?

Please see p 6 for my impressions of the places I visited and their Kathryn suitability.

She is expected to be able to be ‘transitioned’.

This makes a mockery of her very real handicaps. In the same breath it is illogical to say she is Very High Needs assessed, and that she is able to be ‘transitioned to adulthood’.

Where has the extensive desensitisation been done to allow her to do this?

Had she suffered a massive body rather than brain insult, all the resources of an intensive care operation would have swung into place, and whilst there was treatment available to mend her, she would be actively mended. Not so with brain disasters.

It is NOT just a matter of the magic twentieth birthday arriving soon.

Yes, I would wish normality for her. Fervently. And the respite from all the panic and terror she lives within.

Expecting her to fit in with whatever is about is NOT inclusion, and is NOT respecting her humanness. Making her fit in what is so patently unsuitable for all concerned is also not respecting her.

Part of this problem of lack of understanding is because we as a culture take great store by what the ‘doctors’ say BUT they have little understanding of the autistic person, regardless of how much is being written and reported of their behaviour.

As a natural therapist who has spent nearly 30 years assisting people when this medical machine has failed them, I can report that the return to wellness is not understood, or even given lip service in the medical business that is driven by an illness industry.

This means that the plethora of ‘specialists’ who manage behaviour programmes, who produce reports, and who make professional names for themselves writing up interesting cases are not looking to where we could assist and alleviate at the level the problem is arising – not at the person to person interface, (the symptoms of distress) but within the person’s brain and body.

The Autism Research Institute in San Diego, USA has been very active on the path of finding solutions – it is parent based. As such, it is often cited as being ‘anecdotal’.

Well, being a human being is, and being autistic, or being on the autistic spectrum, is particularly so – everything alters what can and may not be a trigger in any given moment.

Scientific research is not a God to be served. It does not link what is required in any way in order to be useful for parents who have to live through the hell their autistic child lives within.

We have a very unforgiving culture. A very retributive one. A very uncompassionate one.

Kathryn is never going to be improved sufficiently to live in any way independently.

She needs constant supervision. When she is distressed – and this is presently masked as she is kept within very tight parameters – and always goes back to be ‘unruffled’ by Patricia – she is likely to be a very real danger to those immobile clients at whatever facility she is housed at.

She is liable to be very upset – and I thought that medicating clients was frowned upon. She can be remarkably quick, strong and stubborn past where even I am capable of being.

The phrase ‘transition to adulthood’ was no doubt penned by the same people who wrote Kathryn’s ‘menstrual management plan’ that suggested wearing red underpants for five days out of every month
– what about my daughter’s abhorrence of moisture?
How was that factored in?

Or the wearing of menstrual aids to get her used to them.
What about her refusal to wear nappies over the past 18 years
– why is this legislative speak not in terms of actually WINNING for the affected person?

Her menstrual plan was written for a mildly intellectually impaired woman.
This is not where Kathryn is on the spectrum of functionality.

That real task (appropriate MMP) was obviously too hard (not actually possible) so they went through the motions – it looks good on paper, but has not been written for my daughter.

Why are the bureaucrats allowed to get away with this?

It is NOT about doing the job well, but is like a leaf out of the TV programme “Yes, Minister”.

So, we have my daughter ‘growing up’ and out of services.

She is not. The aging of her body through the passage of time is NOT matched with a maturity and an understanding of her own, of the processes of survival and of being independent.

My daughter spent most of the time she had at the previous educational facility being treated as though she was not very bright.

She was traumatised daily by the assumptions of others regarding her horror and trauma of being damp, of being touched, of noise and of being encroached upon.

They spent their energies, and all government funding on trying to get her to cope with what she freaked out about.

Without dealing with it at her level – but as a behavioural management issue.
Not in understanding what was so distressing for her and why.

Getting her used to all of these things at once, without ever understanding what she actually perceived, I suspect is a little like knocking someone out every time they come around, so they get used to it.

I would say that the major special School failed as they did not demand funding to allow them to understand my daughter. She has not been ‘schooled’. She was being babysat. Badly.

You can possibly see a glimmer of the enormity of the funding that may be necessary to assist appropriately people like my daughter. Of course there is no bottomless pit to reach into.

Why are we keeping people like my daughter in their own private hells?

Why are we not finding answers to alleviate their suffering?

I know that my finally getting her onto Melatonin saved her and her school and all around her an amazing amount of grief. Once on it, she calmed right down, sleeps all night and is less depressed and self abusive. All this is doing is supplying her with part of what is her signature as an autistic person – a deficiency of Melatonin.

As a kid who could NEVER sleep – even as a tiny baby, and as sleeping medication was at best a temporary measure, and as she spread faeces all over the room and herself when she would awaken at night, and as she was so very unhappy, aggressive and depressed before it – it was just a matter of following a protocol that is already available in other resources – Autism Research Institute – and trialling it – as I did.

Why are we not following these suggestions – it costs a lot less than trying to manage outrageous behaviour?
Especially as we as a culture seem to think that it is just behaviour, and will be behaviourally managed
– why do we not look at autism like diabetes
– autism a possible Melatonin insufficiency
– diabetes an insulin insufficiency
– why is there no research into SOLUTIONS, rather than just management strategies?

It is costing the country immensely in human suffering (these people have families, parents and carers). It costs the country in trying to manage the fallout from autistic people being apparently destructive as they try to live in our world. It is all going to be anecdotal, as people are – but there are precedents, and it is possible to see, as I did, the usefulness of attempting to look outside the rigid, and unhelpful, medical model for autistics.

Having said this, the research has been started – Kathryn is number 8,000 odd – and she was on their books 17 years ago, prior to Google so there is a place to start.

Of course we do have vested interests in not finding things out – the mercury preservative – in thimersal vaccination, and the dental amalgams being two of these.

What cost our children, and their mothers’ sanity? (Dads often take off to a calmer, cosier spot).

The paid employees of all categories around ‘disabilities’ have bought a concept – that Kathryn is needing to transition to adulthood – into flat-like accommodation, and into a place that treats her more as though she were actually twenty years of age – painting her nails etc.

Of course no one has remembered that Kathryn will not be touched – much less held still – and then what about all the noxious fumes from the toxic chemicals given that her body chemistry imbalances are leading to her autism anyway?

Painting her up is not going to help her functionality, although it may help those who write these programmes feel useful.

That is a noble thought.

Kathryn will never ‘grow up’.

Then it can be said that parents are overly protective, that they are too emotionally involved – but we are also often more grounded in reality. Imagine if we were speaking of your six months old grandson.

It is surely inappropriate to put him somewhere where the carers change every so often – within a day, and between days and then expect him to be happily going about being a kid. He would become disturbed through the lack of connection and cohesive expectations.

Well – this is my daughter, and she is going to be afforded the ‘respect’ due to her reaching twenty.

I would wish for her the respect that she CAN NOT reach ‘twenty’.

Even twenty months.

I would wish that common sense applied within the ranks of those who come up with the politically [at present – it will be seen differently in ten and twenty years time] correct jargon, rewriting the meaning of reality along with it.

As an example, the then Chief Social Worker was very happy with Kathryn’s menstrual management plan – she said ‘it spoke to Kathryn’s humanity”!!

What about common sense? – even the most uneducated person could see that it was not speaking to Kathryn’s REALITY.

My daughter, on an unrelated yet highly important topic, “has the right to bear children“.

Well, she is incapable of giving consent for sexual congress, so I am not sure how aborting her potential offspring will fit into the legislation were this ever necessary.

There seems to be a vast lack of consequential thinking abounding in the ‘higher’ echelons of bureaucratic hierarchy.

Again, I mention this, as otherwise you and I will be talking about an entirely different person – and from an entirely different perspective.

I am a mother of a severely handicapped daughter, who is at the mercy of whoever is in place to care for her.

You are heading a machine that needs to be fashionable – to this decade’s best practice ideals. I know my daughter, even though I have not lived as her mother for the past nearly 12 years.

I suspect that those with significant autistic challenges are not considered in the midst of the basic physical care issues, either in ‘educational’ placements or in any form of ‘vocational or residential units.

Kathryn’s autistic issues are not BEHAVIOURAL, although can be seen through these lenses.

Kathryn is mildly epileptic (controlled on medication), is minutely CP – you have to look hard – and is very intellectually challenged due to her very highly AUTISTIC ISSUES.

This is important to keep reiterating, as on my tour of places for her to live (after CYF disengage when she turns 20) and places that are appropriate for her to be in during the day (vocational) I am unable to locate anything that comes close to her level of need. Or where it is actually safe for the others to place Kathryn so.

To suggest that she spends a day here and a day there (to give everyone a break, and to soften the effect of all these inappropriate placements on her) is no guarantee that not only would there be no consistency (abhorrent to an autistic person), there would be no one person to take responsibility and to oversee her progress/development/life.

Kathryn actually needs life-long assistance to be present. (This is unless we can arrive at a cure for what ails her).

She is in the category of Very High Needs, having a rating 3 in Life Links terminology. This is partly because she needs 24 hour care – is in nappies, and has been known to be very disruptive, especially if not sleeping (which was a huge lifetime issue until I started getting Melatonin into her at night – both sleeping and behaviour have turned about) and because she requires watching as she is a possible danger to other more vulnerable people and needs a great deal of outside time.

B – NOW

Kathryn will need to find a day placement somewhere once she is ‘too old’ for a placement within the wonderful educational facility she is in currently – about to be booted out due to her chronological age – again this idea that she will have outgrown the need for any ‘educational’ assistance when her body goes about its own aging agenda. Intellectual disability does mean that the physical body outgrows the mental and emotional capacity of the individual . . .

I have been around a few of the day placement centres, and there is NOWHERE that offers either a continuing lifestyle coaching facility, or the one to one staffing – as she needs a lot of movement to cope with the times when she s contained in a small room with others – she gets sensorially overwhelmed easily – except the Chris Ruth Centre.

Placing Kathryn in the current centre, I thought actually had her winning – and there has been little of that in her life. Now I find out that there is a funding issue. Well, I am used to them. Every level, of government has always trotted that excuse out to me.

So, as the Minister for Disability, I am going to ask you a few hard questions.

1. As the whole concept of a facility like Templeton has been ditched, I can only assume that there was a plan/ consideration of a better place for the residents – a grand plan where the actual humanity of the residents was to be actively addressed.
Otherwise, why bother going to all the trouble of dismantling it?

We live in a supposedly civilised society that condemns mercy killing.

Also, institutionalisation of its members, and also, drugging them up.
So – as we as a community have taken on board a few lofty ideals – where is the grunt to back this up?

2. As (modern life, especially the wholesale introduction of very toxic substances into our newborns’ bodies – called vaccination) modern medicine is keeping our damaged children alive, at all stages of their lives, better, and as we are having more people survive accidents to be left brain injured, and as everyone is living longer due to medical drug improvements, unless we get forewarned and can kill off our damaged goods before a certain stage in utero, it would seem that we, as parents are then more or less on our own.

I have found the answer to this – putting the damaged person on liquid activated zeolites – detoxing dosage for the continuing future has helped Kathryn immeasurably .. .

Where are the projections for increased/improved services to accommodate the ‘non culled’ section of the flock? Were they dud sheep they would have gone to the freezing works.

This may sound crude BUT I am a realist – all parents of Very High Needs young people become so. This may sound harsh.

I am the mother of a child who was supposed to die. That is also harsh. As is her and our lives.

Wandering around the three units I investigated I saw good-hearted people trying to cope with insufficient resources. Not enough staff, training, money or space. Far too many people to try to keep safe and clean and hydrated and fed.

Default to questions 1 and 2 above.

It appears to me, as a parent of a client who is in need, that there is nowhere (besides the Centre) where she will be treated with the respect that her humanity is supposed to be afforded.

Having been at Templeton as a Training Officer around 1973, it seemed to me that one location had been replaced (Templeton day room) for another. Who cares exactly?

Each one of the people I saw rocking, resting, staring blankly, was a much loved and wanted family member at some stage.
They all represent a number of affected individuals.
None of what is happening to them would have been imagined for them during their gestation. What of all the siblings, and other family members? – They all vote.
All of the people on the floor, huddled in chairs, staring blankly out – where are their human rights exactly?
Do they actually just need to be kept in ‘hover’ pattern, or is there more?

WHAT ABOUT THEIR HUMANITY?

If they really have it, why are they in lives we would not keep a dog alive in?

You may think these are harsh thoughts.

Have you REALLY gone in and been in one of these places and FELT with your open heart, the pain and misery of these shells of people?

I would strongly suggest you get “Awakenings” out of a video shop, and see what having a voice back does to other people’s perception of the ‘handicapped’s humanity. None of the people who I saw could speak.

That is the key.

If they could, they would be being heard.

My daughter has no voice of her own.

She cannot advocate for herself.

Without me, there would be no one.

You could argue that no one has let you in on this.

I have heard a lot of politicians slide things sideways over the years.

Well, a lot of the parents have long given up and are nursing their life remnants as best they can. There is only so much fight that any of us can have.

Being a parent of a Very High Needs young person (and she will not be ‘growing up’, so even were I to be around at 90, she will probably still be hale and hearty at 60) is soul destroying. A lot may have just accepted that this is all there is.

Parental resignation I would suspect is a great ally for the average bureaucrat – make it hard enough, and even the most passionate will eventually cut their losses and go away.

Part of the resignation is also – what is the point – that is all there is on offer, and it is better than it was . . . Is this good enough?

Whilst there may be a razor gang about in Wellington, we still as a community have not resolved what to do with the most invisible and voiceless of our clan. Sir Fred Hollows once said that you can measure how civilised a society is by how it treats its most vulnerable members.

When you measure the cost of landscaping around the prisons up against the welfare and daily grind of some of these people I saw today – where are our priorities as a culture?

If we are not allowed to knock them off, why are they allowed to fester in holes of holding pens, whilst funds go off into other more apparently vote catching schemes.

PART 3

Specifics.

A. Kathryn needs to be mobile, and does not cope with being cooped up – she needs to be exercised often, and gets very agitated, which could turn into violence and vast not coping if crossed (trying to ‘socialise’ her). Yes, I know this is one to one management – what ELSE will work?

Everywhere I went, there was NO outside area, no staff to take her off in a safe environment – well Ferry Road and the other inner city environs couldn’t; even if there was the staff for her alone – and that would be a one to one, as she can behave randomly.

Kathryn has never been contained in a room with a whole bunch of other people with severe issues – and would become overwhelmed and this would translate as her moving up into a 4 classification I would imagine. Please reread what is written about Kathryn’s autisticness.

Her inability to cope would rapidly translate into more challenging behaviours – that may then easily replace her current being-ness and become permanent.

Kathryn at present has been afforded ‘vocational’ training, and is happily walking the streets dropping pamphlets in letterboxes. This gets her away from being a danger and being disruptive, because she has significant sensory issues. She goes off to gym every day, swimming often.

B. Kathryn will need to be taught ‘life skills’ all her life.

The classification “Education” cannot be applied equally to my daughter as to the one she would have been without the cause for the various labels she now wears – had she been ‘normal’ like her brothers, she probably would be part way or just finished a university degree, and living an independent life.

She cannot – her brain will never allow her to be much more than what she is.

So where does the concept of education change for her – is it recognised that as she is somewhere in the vicinity of a possibly 12 month person, in an adult body, that she needs MORE educational resources to attempts to give her a better life – or do we assume that were she ‘normal’ she would have been out of the education department’s hands, so she can be shunted off elsewhere as if she were?

The problem here is that we are not looking at the fact of her disability.

By being so inclusive, we actually obviate the need to see her as differently abled.

C. Kathryn is disabled by not being treated as a whole person by this culture.

Where is the placement that suits? It doesn’t exist outside the place I am targeting. . There need to be a lot more of these, with a lot more caring, committed and compassionate staff found. There are people out there who live to work with kids like Kathryn. Why not make their lives (they pay taxes and vote) more rewarding? I would imagine all the ‘making do’ that goes on would get to anyone in time.

I have heard that here are severe funding issues in relation to this facility.
Why?

How can you consider this as a non productive area?

What are you proposing to do with my daughter if she is not going here?

She is distraught enough in her life, without completely throwing everything for her out of kilter.

She is to lose her ‘mother’.

She will be put in with a few other ‘clients’ of ‘similar disability’.

There are none. I would doubt there would be too many Very High Needs autistic people who could be put together.

Whilst this is all ‘age appropriate’, Kathryn cannot be. Ever.

Here at the Centre, Kathryn will receive

1. An individualised programme for continuing life skills and allied assistance.

2. Individualised therapy interventions by the resident trained staff.

3. The appropriate attention afforded to her through having staffing ratios that allow for the personalised attention that each, being within the Very High Needs category, require. In Kathryn’s case this means the ability to go outside, and to roam about under supervision.

4. A continuation from the educational placement that has served her well until then, thus allowing a free transition into the new centre.

5. All this thus speaks to Kathryn’s humanity and nothing else available in Christchurch comes close.

I would like to see the Centre be extended to take on a whole unit of clients who are mobile and distressed like Kathryn, with sufficient funding, so that they can deal with the client’s mental and emotional issues in tandem with their need for inclusion, space, exercise and freedom.

To use the Chief Social Worker’s words appropriately – “to speak to their humanity”.

SUMMARY

As a parent of a young person who is assessed at being Very High Needs, I ask that sufficient funding be set aside for people like Kathryn can be cared for in the manner with which the public thought would be occurring upon the demise of Templeton.

Specifically that extra funding is given to centres to extend what they are already offering, to a wider number of clients, and that more centres like this be developed.

OTHERWISE?

What are we proposing to do to with people like Kathryn to at least make their lives liveable?

She is presently stable and making some progress at the Upland Unit. By the time she leaves there at the end of next year, she will be not able to be left sitting in a room with all the others who have given up, and who are not nearly as autistic (if at all) as she is.

An alternative to what may seem to be all that can happen, is needed, as people like Kathryn are here and are not going to either get better, or die in the near future.

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