When my daughter became obviously a mission for me, I realised that at some point I would write it out to share for those parents who found themselves where I did – lost in the morass of medicalised hopelessness.
Why do I still search?
I keep finding more answers and not just for Kathyrn, but for all of us.
No one told me ..
I asked many. Those who knew, especially the specialists who had been exposed and had heard of the solutions I finally found, and were treating or at least observing the children they were looking after – did not mention what else I could except wait.
Whilst they held the keys that would have gotten Kathryn further faster, I had to turn all stones over myself. This may be the only way to get result – have to fight for them
So why is this site up?
In case some see it and actually get inspired. . .
Please do not argue for your limitations –
I heard the diagnosis and went to work . .
Kathryn is neither dead, nor deaf, nor blind, nor massively epileptic nor massively cerebral palsied – she is profoundly affected by autism – so I cant say about her intellectual impairment . .. but that is the vaccination issue – and the mercury story – and I have not finished with this one yet.
What was this mother thinking?
Is Normal what we really need? (written 1999)
There was my baby daughter, stuck in a well body with a ravaged brain. A baby brain – a relatively undifferentiated brain, one that had the potential to heal itself in ways that adult ones cannot. A quickly developing neurological system. Why was no one else interested in attempting to change the outcome? Why was no one seeing what was so obvious to me? If some of the dormant cells could be encouraged to take over, and run the show instead of their dead and hence useless neighbours, she could continue on as I had planned – a perfect human being.
From the medical model, I was obviously not ‘with the programme’. Fancy thinking that there was a solution to every dilemma! Hence, I found myself having counselling with a psychiatrist, who gave me the ‘good’ news that I was not clinically depressed, that I could do with weekly chats to relieve myself of the inadequacies he thought were evident in my telling of the story of my growing up.
I wondered if he was mad
My daughter had been through a medical crisis. She was left as human garbage. She could not get past “Go”. She was unlikely to live, much less live in a world that would accept her, and here he was waffling on about her mother’s world long gone in a different time.
Not this ‘now’ – I had a real catastrophe unfolding before me. Non development – the apparent fulfillment of the prognosis as laid out by the medical specialists. The seeming inevitability of the prognosis becoming a reality. I set about searching for another framework that allowed some likelihood of rehabilitation for her vastly damaged brain, hence rescuing her, and thus my futures.
I found programmes and instigated vast changes in our lives to accommodate the extreme busyness that was part of it all. Life continued. All the while, the dream, some would say, the obsession, was to create the one I thought that I was ‘supposed’ to have had. Nothing spared. I also realised that if I found myself in a similar situation, I would be appreciative of someone intervening on my behalf. I also knew that if anything happened to either of my sons, I would have rallied in the face of medical inertia.
Hence, sidelined for eight years, that is what I did – went where no-one else seemed either interested, or willing to venture – into the realms of very different. Along the way, Skye tried so hard to die. Why didn’t I “let” her die? There was no guarantee that each was not just going to leave her with less than what she already had to work with. Death was the easy option – but, it didn’t seem to be hers. Just trauma, terror and more psychic pain. One after the other horrendous illness. Her immune system was so compromised that she caught viruses that I did not know existed.
She screamed through sleep cycles. Refused to sleep. Living was a horror for her.
By the time she was a year old, I realised that she was remarkably autistic. Autistic baby – not what I would wish on anyone. A dreadful handicap, without her accompanying massive brain injury. Hence NO bonding. No positive feedback. Why did I keep going? Because I knew that her hell was worse than mine. I knew of options, she didn’t. I had choices. She didn’t. I could walk off, and she was stuck where she was. No prospect of a life past that which I would not ever wish for myself. I wouldn’t want to be left there, hence I didn’t abandon her to it.
My then husband wondered if she actually wanted us to leave her in the state she found herself. I argued that if this was the case, she would have chosen any other mother. Not the one she had, as I was an independent thinker. I was unlikely to accept defeat. I had the philosophy that ‘problems’ are there to allow us to grow past where we were at their inception. Hence, grow we, or at least, I would.
As an acupuncturist, I knew that the reason a person thinks they are walking in for assistance is rarely the core issue. The physical aches tend to give us valid cause to ask for help. Thus, in acupuncture jargon, the constitutional Kidney Jing, Liver Yin, and Spleen Yang deficiencies, poor Blood and energy (Qi) production and circulation, and “phlegm misting the consciousness”, are all screens that we as therapists can play with, rather than seeing beyond, to what set them in motion. A different level of labeling.
Similar to the orthodox medical system of logic, acupuncture and other healing modalities can label and go to war with all manner of physical manifestations, rather than acknowledge, understand, and encourage normal to return. Understanding HOW the system is manifesting its disorder, seeing the symptoms, attempting to alleviate just these, even focusing solely on the underlying acupuncture energy imbalances, and trying to remedy these, is to miss the point.
Why not go further back into causation, and ask why is the system not healing itself, correcting its own imbalance? What is stopping it from its automatic self-healing? From here, possibly asking – Why did it go off in this direction in the first place?
Does it have a reason, an agenda, to be uncovered, before change/healing can occur? One that possibly once is acknowledged, removed, transmuted, or otherwise dealt with, the apparent front for “the problem” can dissipate. Hence the possible reason why some things never seem to get better – we are looking at the result, and trying to rid the body of its reaction, rather than the origin of its imbalance.
In fact, seeing ‘the problem’ as needing fixing, rather than it being the beacon to alert us to follow back along the path we could be lead down, stops us from finding the ACTUAL imbalance. “The Problem” is really “The Answer” to something else. Maybe whilst we are so busy trying to correct ‘The Problem’ we also begin to understand how our goal posts can change and we can achieve whatever it was that our script is possibly leading us to find. Maybe this is when people say they were desperate enough to . . . . go outside their belief system. Past where they are comfortable – as ‘The Problem’ surely has them stumped.