News

Skye’s Own Journey Interspersed With That of Her Mother

At some point into the ‘rescue’ mission, I realised that my original timespan of three years was not going to be met.  Not ‘normal’ in three years.  The dawning of the realisation that possibly never ‘normal’.  The final acceptance of her perfection, as my perfect daughter.  Not like anyone else’s, as I was not anyone else.  I was living a different life, not always necessarily pleasant or calm for my personality and earthly desires.

Skye often went on what I called her ‘integrative holidays from life”.  Meaning – she is taking time out to decide whether to keep on going, or to opt out.  Usually she did this in a dramatic way.  Stopping eating altogether.  Radically ill.  On a drip in hospital.  Coasting in neutral gear, hibernation mode – very difficult to observe, as her mother holding a desired outcome of well and “normal”.

After each of these, she changed.  Physically, as a naturopath I could watch her changes in a  detached diagnostic manner.   Her irises gradually went from black, through very, very dark brown, to where I could finally see the immense number of nerve rings.  The naturopathic concepts of going back through ‘disease’ seemed to be so if we looked at the progression in her eyes.  She gradually became less autistic. Very slowly.

Her Mother’s Story

I started giving her on powdered Chinese herbs in adult quantities., three times daily, mixed with ripe banana for palatability.  She had to have this to eat.  Thankfully she was obsessed with eating. The previous dance of attempting to align normal body functions became less intense as they worked their magic.  There became a very gradual “un-misting of her consciousness”.  Slowly a spark of possibly someone present looking out through her eyes.  The dawning of more than blankness in her expression.  An awakening.  An occasional reprieve from the chaos and the horror of the unusual that had re-framed our new parameters of ‘normal’, in living with her.

I learnt to watch her suffering, her misery, her frustration, her anger, her terror, her withdrawal, and her incredibly tentative glimpses of reaching out, of opening her barriers, her attempts enough to try again – at her speed.  It was her journey.  Her path.

I had no idea what it was that she had to shift through, before she could get to where everyone else took as a right, as a part of being human.  I did find that I could guide, I could support, but that I could not force the process.  Where I wanted her to go, what I wanted her to be was not necessarily where she WAS to be.

I could then draw a parallel in my old life (at that point there I was early thirties) as a teacher and practitioner of acupuncture.  As I had learnt through my life to date, the easiest path is often the one that looked the hardest.  That which I resisted the most usually ended up being the answer to many apparent problems.  That by stopping and seeing that which I would expend the greatest amount of energy avoiding, was often the short cut. If I just had the wit to see.

In this present life, when people walk in my door wanting me to rid them of some pesky problem, to ‘fix’ something that feels uncomfortable, I often wonder if they really know just what it is that they may also move, if they allow themselves the space, like I learnt to with my daugher.

To see that more is often achieved by allowing the dis-ease, the discomfort and the pain attached to a belief system, to remain – to change the focus and instead – to let go of the belief system.  To work on the ‘self’ that allows the ‘problem’ to be there, rather than be forever distracted by the results of self eating, drinking, being who self thinks self is.

 

Skye’s mother’s learnings

To complete the picture, to acknowledge the energy giving the structure resonance.  As in the case of the dying baby – when a change was effected in one area, a whole shift in the fabric of all levels of existence.  Consequential to the release of a blockage, all could move on.  Battle ended by appropriate action.

In Skye’s case, the constant battle to Not Be. (here), needing to be addressed, more than the ways she creatively manifested to exist

1) – I came to allow and accept the incredible shifts that needed to happen in order for me to go on to the next step.  I learnt that everything we do as therapists is band-aiding.  Regardless of the apparent causes on this plane, the real reason, acceptance and the understanding, seem to have to come through our time experiencing the fires of life.

2) – The degree of suffering is evidenced by the amount of resistance we put up in not discarding that which no longer serves us.  To be able to cast aside the past, and those conditions and beliefs that hold that past to us, allows us to devise a different set of ‘rules’ in the game of life, to match the present we are in, if we can only be there.

3) – I learnt that this play, the game we see as life can be vastly altered backstage.  In me changing who and what I was, my daughter was granted the space to reassess.  Just as the dying baby’s script was altered when her parents had the courage to confront their worst fears.  Just as the young man who had, until I offered an alternative, thought of himself as ALWAYS AND FOREVER a paraplegic.

4) – Skye showed me how to transcend my own handicaps (what I held dear as my belief systems).  Her labels (blindness, deafness, cerebral palsy, brain injury, profound intellectual impairment, epilepsy, autism) were matched by my own – pride, ego, independence, lack of faith in universal providence, and a general ignorance in thinking that I was in charge.  As I worked through mine, hers moved on.

As I changed and healed, so did she.

Was this a ‘placebo’ effect in some way?  Was it that when I saw her differently, that gave her permission to give it a go?  At times, it seemed so.  Or was it that as she changed, I could?  Ultimately who cares?  If the desired result is achieved because someone believed it to be so, and it was, is this not then healing?  That it is not effected in the orthodox manner is hardly a worry for the recipient.

However, to the observer, ‘unsafe’ may be triggered if the world is not always following ‘the rules’.  After all, this is all ‘anecdotal’.  Where are the double blind trials?  Maybe all a case of misdiagnosis – not really THAT brain injured.  Not really cortically blind, and now seeing well enough to pick little bits off the floor.  Not really THAT damaged, as how could she now possibly have THAT much function?

 

Kathryn Skye’s family of origin

Our Personal Journey

Why did the soul who chose to be here in my life, as Skye manifest the experience?  Was it to teach me to go beyond what had been my previous limits?  Was it to teach me that I, as an ego driven personality was not in charge?  Was it to allow me to finally break through a vast array of issues that had held me stagnant in my life?  Was it to allow the changes wrought in me to totally alter how I was as a person, a mother, a teacher and a therapist?

It did all of these.

Was it just her story? I have not/can not speak for her father. This definitely shaped the lives of her older brothers.  They both had a major role in her growth.  Sean, more as a co-worker, part of the therapy team, a stand-in adult.  Josh (now Ty) as a brother.  The sort who trips you up, hassles you and generally is more real, than those who see you as ‘damaged’.  She was his little sister.  The only baby he knew.  It was often Josh who just knew what it was she was saying, or wanting.  Both sons had very enriched lives as a consequence of sharing their childhood’s with her.

Both sons were invaluable for their mother, to keep a sense of perspective.

Through all of the intense life and near death dramas we experienced, I learnt to step back.  To be guided not by wanting to rescue, but by acknowledging another’s process.  To recognise beyond the apparent, to respect the life force, the currents flowing through the tapestry of what we believe to be our lives, reality more than this ‘here’ and ‘now’.

 

Gratitude list – other people’s hearts

1) – Having Sean her then 11 year old brother as a live-in helper meant we could always do 4/5 patterning sessions prior to school /work (every morning without fail) and again catch up what had not been done after Keith and Sean returned home (often) occasionally when the volunteers had not totally present.

Sean also was his mother’s saviour as had Skye not slept, he would be woken 5 ish so I could sleep at least 2 hours, before I got up to organise the day. This happened for the first few years as Skye’s behaviour was so disruptive.

2) – Volunteers – who often stayed to do other things than the programme

3) – Judy Gordon and her helpers – who cooked and assisted minding Josh and doing background work whilst I was to-ing and fro-ing from Healesville.

4) – Those who knew me – as a healer – often came in and helped as friends – as they were ‘free’ and could spare a few hours weekly.

5) – Neighbours and those who came from newspaper and supermarket appeals for help.

6) – Those who just found out – or who knew me and came along to assist

7) – Far too numerous people whose names and contributions I have forgotten – who made my journey so much easier

8) – After 3 ½ when Keith left and Robert stepped in – his presence meant I had a back stop – impossible to carry on without him.

9) – After Hinch programme on TV exposure – Joanne was hired and she was invaluable – for years later as a fall back second mother for Kathryn.

10) – Sarah and then her mum

11) – ?Someone whose name is lost in time, with small kids who had Skye over night several times .  .

12) – Stephanie and George who stood in as grandparents via the Westcare scheme so I had a break on alternate Saturday afternoons.

13) – Westcare respite system that meant on Tuesday nights I could sleep as Kathryn was there on a regular basis. Also had her there a couple of times for up to a week so I could go and have a break in my life (USA seminar and AIDS/yoga retreat/Soul emotional retreat)

14) – John Hunt who took Kathryn on Sunday mornings a few hours

15) – Kumu and her family – especially picking up some of the parenting of Josh I just could not do – to give him sa break from all this activity.

16) – Really far too many people who have slipped out of my consciousness 23 years later . . for which I am deeply sorry as all made my life easier and thus more able to be there for Kathryn and her brothers.

Hindsight – a bucket list

What I would do differently if I were to do it all over again with what I know in hindsight?

In looking back over this after writing it – it does look like I am beating myself up – so taking the lens of maternal guilt away – these are the things that I could have done better.

I have no idea whether saving Kathryn Skye was what I was ‘supposed’ to do – but in so doing I have changed a vast number of people’s lives and she and her presence has given meaning to far more than I will ever know of.

1) – During pregnancy I would have paid attention to my own incredible ill health.  Lack of Iodine, Zinc, Magnesium all played their part in this saga of my not knowing and decades on starting a wish list of what I could have done (in hindsight) so much better ..

The massive upper respiratory infection (toxoplasmotic infection) that was so unlike anything else I had ever had would have been fixed had I been looking after me. I was not.  As a ‘good’ mum I was focused on the children.  Look after your own mask first they say on planes. . ..

Vitamin C in therapeutic doses – at least 10 grams spread over the day would possibly with the addition of Zinc – as it is so deficient in the soil and Selenium – ditto – and Vit D – and Iodine (I did not know I was so thyroid challenged) would all have meant my immune system would have had some help.  Magnesium would have helped all the uterine cramps and insomnia and allowed maternal coping.

Of course had I been happy in my marriage and had we been relating well the underlying inner distress would possibly have meant healing may have been able to happen.

2) – When Skye was vomiting milk from her nose and when she was not well and discharged at 5 days old as a well baby – when she so patently was not – I could have demanded care – but was more interested in getting home to look after the boys better than was happening with me not being there.

As she fell into the huge hole of neurological disintegration I could have demanded care – but my then husband made such a deal of having a paediatrician and his not even thinking the problem was bad enough to even warrant talking with me – let alone seeing her.

Me not just walking into the hospital and demanding care was the major stumbling block.  As she became more and more dysfunctional and harder to keep awake (going into a coma) and harder to breastfeed, I just tried harder . .. ..

3) – When she was in intensive care and dying – I could have stopped keeping her here. I saved her  from dying actually many times. That would have been easier and for her – ???who knows – better???

4) – Starting a not good enough neurological rehabilitation programme and not being satisfied, I could have possibly searched harder to find more on what else – as the year lost whilst we did some and not all of the programme was a waste . . . time spent investigating what mainstream could offer was another waste of Skye’s developmental stages.

5) – When I found Kenja – I could have gone against everything Keith wanted and gone to Sydney to do the course as Skye was the most present ever when they worked with her.

6) – Finding Reiki was a Godsend – and possibly I could have found them earlier?  Also it would have been far more useful had I been attuned to Reiki when pregnant or at any time prior to her birth – as I could have had the tools – my own healing hands – in all the time she was screaming and I was holding her.

7) – Not getting involved with parent support group politics,  Far more egos involved there and not nearly enough thoughtful questioning and therapeutic intention.

8) – Getting Keith to leave earlier . . . It meant I was finally actually doing what I had been – doing it all myself – but without the brake – as he was so very good at passively obstructing the process.

9) – Not getting her vaccinated for MMR A parent’s dilemma. http://www.youtube.com/watch?v=d40suCKnjbI http://vaccinationdilemma.com/ This was the beginning of a huge period of trying to save her and maternal exhaustion as I battled to keep her alive and sane for over a year.   She was never as good as she had been prior to the vaccination.

10) – Finding Melatonin – I would have had a far easier life had someone suggested that as a highly autistic person she had wonky brain chemistry – her inability to sleep was devastating to both of us.  I did not get her started on this till she was 19 years old. . . an incredible journey of maternal devotion . . . and then picked up and followed on by Patricia.  Kathryn’s sleeping then meant she was far calmer in the day and a little more likely to pay attention and not go into self harm and abject distress.

11) – Only being one woman, replete in inner resources, but few outer ones.  I did all as I could as quickly and as courageously as I could.

Wearing out is what all humans do at some point. The fact that when accidentally pregnant at the end of a relationship and having a child who looked like being about to die – as she was at 7 1/ years old – meant that the ensuing unwanted pregnancy and much loved baby took over and Kathryn was let behind to apparently fend for herself in another chapter of this mother’s journey.

Best Advice Ever

Perverse as it seems now – the very best advice ever given to me regarding Skye was from the hospital:  had I heard it from my heart, not my head . . the growth of a mother .  . through the getting of wisdom.

  • Learn to live each day at a time
  • Never expect anything of her
  • Learn to love her

On top of the prognosis, at the time, this sounded obscene – do nothing and nothing will happen – as nothing can happen.  In hindsight, the only way Kathryn (Called Skye then) has come forward is through my acceptance of her wholeness as a person, her completeness as she is, and loving her being.

Wanting her to change and/or be different is a world away from needing her to be so.

On stumbling across the …Option message http://www.option.org/about_us/atca.php and the work they did with their autistic son.  I felt utterly bewildered – how could I lovingly accept that my daughter couldn’t develop past the … slug she was?  What an uncaring, no good mother I’d be if I let her stay in the mess she was in.  I didn’t realise that it was up to me to change my perception of it all.  A temporary situation, of learning and growth, to be handled with spiritual elegance.

A golden opportunity to learn unconditional loving, to live totally for another to carry poverty to its ultimate – reshape a child’s future by giving it everything, sparing nothing, giving beyond everything any expert had to say.  Indeed, totally disregarding ‘experts’ I decided neurologists, paediatricians, physiotherapists, occupational therapists, speech therapists, special aid teachers, psychologists, psychiatrists – everyone was being trained to see what couldn’t happen.

They could label, then having a label, move on.  I alone lived the reality of a massively brain injured baby. They saw her for a few minutes to take measurements and observe her total lack of response, then they’d go onto their next reality.

If I saw Skye as a massively brain injured baby, she obligingly played the part.  She could breastfeed and dirty nappies.  Sleeping came very hard for her and judging by the distorted shape of her head, she probably was in a lot of pain.  The drugs, both anti-convulsive and viral suppressant, had an unknown effect on her.  She didn’t want to be here and made her opposition to anything and everything obvious – either by active rebellion or passive withdrawal from all contact.

We heard the labels given to her.

We ran them through our conscious thoughts, probably every time we saw her. Occasionally when I got caught up in a moment of fun or spontaneity – she became my daughter and we played however that was.

From there through all her ‘dying swan’ acts – I loved and supported her.

Always wanting more was not accepting what I had – what a conundrum!!!

Now at 27 years old – she is astutely walking her own path.  Being her own person. Able to as she is loved and accepted. She knows when she is.  She knows when she is being judged. She acts accordingly. Acceptance meets acceptance. Love meets love. Whilst with me – and she knows who I am although it may be months or years between meetings – she was attentive and treated me as her mum – as much as she could.

Sprinkling her with my amazing clearing Aura Soma bottles, and possibly as we were in a very safe setting, she was no doubt having all her inner ducks lined up – and she did one thing she had not done before, or since . . . we could say as a totally unexpected birthday gift for her mum.   Autism is surely about having splinter skills!!!

The mother of a ’special’ kid’s heart gets a workout.

Let go of the outcome and sit back and love.

 

 

Kathryn -Our Waimarie Runner

Kathryn attended the Waimarie Adult Learning Centre at New Plymouth Girls’ High School for two days a week in 2008. The Unit has traditionally catered for students with severe physical disabilities and in 2007 we enrolled our first student who was mobile.

It was with enthusiasm that we met Kathryn who was not only mobile, but a very athletic young women who loved being on the move. She offered a new energy to the Unit and a program was created to balance the release of this power along side her learning program. Staff were encouraged to engage in a vigorous fitness training program so they could keep up with her on her daily jogs.

Two instances come to mind that provided great humor to all. The school sports days are for all to test their physical prowess or just join in the atmosphere of fun and challenges between the house teams.

We arrived at the large sports venue and maneuvered our five students in wheelchairs towards the grandstand that sat all the waiting teams and spectators. Amongst the hundreds of heads surging in the same direction, the staff lost sight of Kathryn. Anxious staff frantically scanned the mob and covered any possible exit. Suddenly the speaker system blared out “Would that young woman please get off the track.”

Kathryn had leapt over a large fence and was happily jogging down the centre lane towards the finish line leaving the man with the starter gun and row of prime athletes lined up in their starting blocks for the 100 meter sprint looking a tad frustrated. Kathryn had her chance later in the day when she jogged around the arena and gained house points in the 5OO metre fun run.
In term three the school participates in a Fun Run where all students can walk or run a course measuring 5km. Again mufti is allowed and everyone races to the second hand shops to buy their new outfit in their house colours of course.

It was the first time in the Units 13 year history that one of our students could run the course. It was an delight to run alongside Kathryn and hear all the encouraging cheers of support from her peers and staff stationed along the course. Kathryn has a beautiful fast running style which one can liken to a panther in full flight.

The only reason we did not rank in the top times was her great desire to gather treasures on the way. The course was set beside a small river with trees banking it, so a large pile of sticks, leaves and the odd ice cream stick were scooped up on the way. One staff person of my age era likened her to the children’s Sunday Stories favourite “Diana and the Golden Apples.”

For those not brought up in NZ here is what we listened to as kids growing up on a Sunday morning – in stead of the very questionable video music the kids do now . . .
******** http://www.dailymotion.com/video/xnm13_diana-and-the-golden-apples_fun

Kathryn (orginally known as Skye for first 4 years) being different . .

From a friend in retrospect . ..

Prior to Kathryn, Heather already had 2 children;

My memories are of Heather looking after me – especially cooking. Her energy and interest in life. Her drive and intelligence. Me at times feeling discombobulated in big city Brisbane and with study (she was my main acupuncture lecturer when Josh (3 years older than Skye) was just a baby). She feeding me and that was what I needed. Practical mothering care. Where did she find the energy?

Skye born and had high fever, convulsions. Me thinking – let her go – the work and commitment involved in keeping her – Was it kind particularly as she fought so hard to go and would have a life with considerable brain damage? You don’t say no to Heather easily and many of us roped into Skye’s treatment (and we wanted to) cross crawling to develop the brain. Three of us at a time moving her head, moving her arms and legs as if she was crawling. Her lying on her front, screaming and I found that hard to do.

Hard on a marriage and Heather and Keith separated.

Years later when Skye was nearly 4 Heather and her friend, Jane; and Skye were on a trip and I was living in Queenstown by then. I blithely said I would take care of Skye/ Kathryn while Heather had a day off and went on a tourist trip for 12 hours. I took Skye/Kathryn down to the lake for a walk and began to realize then perhaps this was not going to be an easy day. I learned the hard way what severe autism was.

There was someone home but the lights were very different to anything I had ever encountered with anyone before. There was NO response to anything I said, signed, led. She had heaps of energy so I just let her run about safely. Heather had left instructions as to her feeding and supplements, pull up changing which was easily accomplished as far as I recall.

Later in the day, before Heather arrived back, I had Kathryn inside and she was becoming fractious and bored. I tried the usual things; was she hungry? I tried reading a story. Nothing. NO response just continued noise and moving around. How about the TV? Again nothing. It was as if she couldn’t see it in the same way the cat or a dog doesn’t despite being in front of it. NOTHING would entertain her or engage her. I was totally at sea as I had had no experience of a person this different from normal. The whirling around the room and noise increased. Even I could realise she was very agitated and bored. Because it is over 15 years ago, I cannot remember why I did not let her be outside again. Perhaps it was dark, or I was afraid she would run away. It was so hard to see her this distraught. I was getting exhausted and distraught myself and felt like I could have thrown her out the window. She was a beautiful child: the only physical sign of her disability a small head.

I was SO very pleased to see Heather and from what I remember so was Kathryn.

I have only seen her once since then about two years later in Christchurch when I visited Heather. Heather did an amazing job with her and I respected her decision to have give her up. I am very glad Kathryn has such a loving and caring family to take care of her.