I do not know Chinese. Neither the official Mandarine, nor Cantonese, nor Hokkien nor Teochew – none of them. From that perspective – I am illiterate. Does it make me dumb? Does it say anything about my intelligence or lack thereof?
When little kids in Singapore point my illiteracy out to me – unintentionally, simply by doing their primary school homework in front of me: all of it in those mysterious Chinese characters – does that insult my intelligence? – Obviously not. Nor shall I feel insulted by discovering my illiteracy as a newbie in any field.
- Intelligence – is my toolkit, my ‘inner game’.
- Literacy – describes my knowledge of a specific subject or mastery of a certain skill.
Being literate empowers me to ask intelligent questions and expect expertise growth – provided that I put the effort in.
is a domain below. If I am illiterate I am not able to ask intelligent
questions – the ones that are going to lead to my further growth. If I am
illiterate then no matter how hard I try – I’ll never go beyond the copy-paste
repeats/parroting of what I hear or see. I’ll be an easy prey for whoever wants
to abuse my trust since I won’t be able to tell a friend from a foe. I’ll
wander aimlessly getting more and more desperate and becoming an even easier
That’s the key – without literacy in a specific area even the most intelligent people are incapable of asking intelligent productive questions.
That’s where the catch is. In fact more than a single one.
There is a well-known saying that everyone considers oneself an expert when it comes to politics, finance, relationships and health. That’s why all of those end up being a mess.
This observation is meant to be sarcastic but as we say in Russia: Every joke is only partially a joke/ has a grain of a joke in it. (i.e. most of it is the truth)…
Indeed we are immersed in the information flood related to health, relationships, politics and finance ever since we are born. This immersion plays tricks on us that we end up paying dearly for – we tend to confuse this familiarity with being literate. Oftentimes we even go as far as developing a false sense of expertise about these key areas of life – unable to recognize that we remain illiterate even under media barrage unless we choose to specifically invest in obtaining literacy.
“I’ve heard about it hundreds of times” – shouldn’t be mistaken for even initial literacy. Actually whenever you catch yourself saying this – it’s a telltale sign of ignorance and fake familiarity.
2. True literacy requires an investment in building it and a mentor to supervise and guide you.
If you haven’t invested in it – you don’t have it for sure.
It’s like the alphabet and learning to write – you need a deliberate effort and staged immersion.
The need for mentor is self-evident – when you are illiterate you are not able to ask intelligent questions. You don’t know what you don’t know. The only way out of this conundrum is to get a mentor – not necessarily a live one; it could be a book or a course but there has to be some clearly outlined structure aimed at your skill acquisition. Otherwise you’ll wander aimlessly until you run out of gas and quit (being at mercy of whoever agrees to give you a lift).
Let me share something with you:
The main reasons why intelligent people end up doing profound mistakes are confusing familiarity with specific literacy and picking up/ choosing a wrong mentor.
Friend or foe – that’s where you are at. You need due diligence and detective skills to tell one from another. And if fairy tales and adventure movies are to be of any authority – beware the one who sweet-talks you.
In 16 years of teaching parents of special children I’ve met thousands of really intelligent people. I’ve had the privilege of coaching the most active, the most dedicated, the most resourceful special parents on the planet who managed to discover ABR despite our counter-intuitive message, our promise of labor-intensive work and our non-existent promotional exposure and advertising.
I’ve been really fortunate to meet so many smart people from all continents and from all walks of life, but… unfortunately … I am yet to meet a family that is biomechanically literate in respect to what's going on with children affected by Cerebral Palsy.
Here are some basic features of biomechanical literacy that you’d be helpless without:
Understanding the muscular imbalance laws; ability to recognize the ‘shades of gray’ and not just black-and-white; clear visualization of motor functions milestones down to the inch-pebbles that make them; setting priorities of applications in order; ability to distinguish between fake and true positives and negatives…
Feel free to test yourself on those…
This absence of biomechanical literacy –is not your fault, it is not your flaw and it is not an insult to your intelligence – it is the unfortunate aftermath of the ‘historical’ forces that shaped the healthcare landscape for children with special needs, especially for Cerebral Palsy and other major movement and posture disorders.
This landscape has been shaped by healthcare professionals for healthcare professionals being accountable to other healthcare professionals. You, the parent, has never been a key figure in this equation.
So even if you have tried to educate yourself by browsing through all major hospitals’ and big charities websites – you are not going to build literacy that is specifically shaped around you – the parent as a key figure.
What you’d find as a ‘popular medical knowledge’ is a diluted professional knowledge– it is not parent-centered at all.
Why a child is called a special needs one? (We all got familiar to the label ‘special needs’ without really thinking about it. But what is implied by ‘special needs’ definition?)
‘Special needs’ status indicates that external “treatments” and “therapies” fail to elevate the physical ability of a person to the level necessary for independent and unassisted existence in social and biological environment.
Am I saying that I am an ‘unrecognized genius’ who have found a magical cure for special needs but being oppressed by ‘profit-hungry’ healthcare machine? – None of such nonsense.
Nor am I going to tell you that “I am close to a solution, the cure is just around the corner – just hold on for a little while more.”– that would have been a lie…
My message is more humble:
I am going to try to build the case for 3 main ideas:
1. No matter how intelligent you are – you need to invest in specific ‘parent-centered’ literacy about your brain-injured child’s condition in order to even have a chance to become a ‘game changer’ yourself.
2. Unfortunately, your literacy is not going to come from the ‘authorized’ healthcare sources that you’d think should be your reference for parents’ literacy and education. Healthcare experts are deeply entrenched in their professionals-centered agenda. They are too soaked in it to ever be able to convert into truly parent-centered ones.
They are the guardians of the old ways and their attempts to put a parent-centered cloak are clumsy at best. The ‘talons of a hawk’ still poke it through it.
The best advice you can get from medical ‘pros’ is a diluted version of what they are doing themselves. GMFCS curves clearly tell you that those methods do not work even in a “full professional edition”—what do you then expect from a watered-down “home-version”?
3. Your own ‘marathon-minded’ work is the only reserve that hasn’t been tried well enough and hard enough.
You can trust healthcare professionals on their assessment of whatever is being called ‘treatment’ or ‘therapy’ for children with cerebral palsy – there are none. Healthcare professionals are right in telling you that “There is no treatment for your child” but they miss the point on the potential of special fitness and conditioning delivered day-in-day-out by you at home. They miss the point on the potential of ‘ultra-marathon’ mindset and tools – since they are trained as ‘sprinters’. Even a lot of assembled sprints do not make a marathon. There is an even lesser chance of a sprinter becoming a coach for an ultra long-distance runner…
They are right when telling you to “Stop chasing rainbows” – I agree with this wholeheartedly. You are not going to find an overlooked ‘done-for-you’ treatment delivered by professionals anywhere in the world that is going to be superior to what official healthcare offers you at home. That’s a fact.
However, stopping the elusive chase of rainbows is not equivalent to quitting and succumbing to surgical ‘comfort management’ mentality that healthcare offers as the only alternative.
“Stop chasing rainbows” means that for your own good you need to stop dreaming irresponsibly.
However, you do have a choice:
A. “Stop dreaming, period” – Quit the pursuit of developmental progress for your child and just let the healthcare professionals do what they deem necessary to do. Do not burn your precious emotional energy, time and money on ‘wonder treatments’ – like stem-cells and alike.
B. “Stop dreaming irresponsibly and start dreaming responsibly”.
This is exactly my point.
- Stop thinking ‘cure’ – start thinking Strategic Developmental Enhancement, i.e. how to maximize the long-term developmental outcome
- Stop thinking milestones – start thinking inch-pebbles. Think GMFCS curves and how to get closer to the next one.
- Stop looking for ‘done-for-you’ treatments – start thinking about transforming your ‘inner-game’ – improving your own skillset and knowledge base.
- Stop looking outside/ external “therapies’ & treatments” – start looking inside: You are the key person and your home environment is the key place.
- Stop thinking ‘fixing/removing the wrongs’– start thinking ‘build the rights’. Do not try to exterminate ‘spasticity’ – keep adding strength to the weakest links
I hope this helps…
P.S. Let me give you an analogy that might help getting around these issues – obviously I am going to draw it from one of those domains where everyone is an ‘expert’ – I’ll choose finance. (Since politics and relationships are things where I am genuinely ignorant…)
Healthcare professionals send you two messages that they actually perceive as a single one. Directly [via the means of GMFCS curves] they are telling you: “Get-rich-quick schemes [i.e. “pro”-delivered treatments] do not work. We tried all of them and we keep monitoring the ones that emerge. So far none of them worked. “
But indirectly they send you another message that they consider packaged and tied-in with the first one:
“Don’t you know that the only way to achieve financial freedom is via a get-rich-quick scheme that will eventually work? We are your watchdogs on that. So far such a scheme hasn’t been found by us but we keep looking. Hence, dear friends, you shall be contempt with staying broke. Toughen up and find your comfort zone around being broke. Don’t worry, if it gets too tough – we’ll pass you some coupons for basic necessities [i.e. surgically mold your child to a wheelchair and manage his discomfort with medications]. ”
Fortunately there are more layers to reality than this black-and-white choice: cure or failure; ultra-rich or dead broke.
How do you get away from being broke? – You start to work (get a job) and try to get good in it.
Well, you might not get ultra-rich, true, but if you keep getting better in what you do – you’ll be moving up. This is the principle that establishes a healthy fabric to our society and it is no different when it come to achieving developmental milestones for your kids – one inch-pebble at a time.
It’s not as easy as ‘waiting for gracious gifts from the Priests of High Order’, i.e. certified healthcare “pros”; and not as exciting as gambling your resources away through lotteries of new “treatments” (stemcells and alike) – but I still hope there are enough takers: because if you approach your job with passion and attention you’ll soon discover the excitement of the journey instead of the dread of being dragged towards unknown destination…