What is the best way to defuse fear and confusion that you are constantly being exposed to by medical establishment? – Knowledge.
To be precise – not any knowledge but parent-centered advanced knowledge.
I feel it is important to distinguish parent-centered advanced knowledge from a diluted and dumbed down versions of medical textbooks that you find on ‘official’ websites on Cerebral Palsy.
Hip Subluxation Video Series intend to do exactly that –give you a comprehensive perspective on the subject that is exploited most often by fear-mongers.
I have prepared 8 videos – each of them at least 30 minutes long covering a subject of hip subluxation extensively, digging deep and going broad in order to build it into the entire context of your CP child’s development – especially for quadriplegic kids.
Yes, it’s a lot of information and yes, you need to do your homework encouraging yourself on making an effort to absorb and digest it. However, considering all the emotional and financial costs that fear and confusion around hip subluxation and other ‘scary’ issues related to legs alignment and mobility impose on you – I think this homework is going to be a worthy investment of your time.
I wish I could have given you some really simple answers and reassurances to the likes of: “Duh … Dun worry… With ABR you are safe, sound and guaranteed the amazing success without the need to think too much and educate yourself. Just do as you are told…” Unfortunately, I can’t.
To begin with I have no official title or government-backed authority to make this kind of statements. But even if I were – this type of message “don’t think – just do as you are told” is at odds with my own core values. I believe in due diligence, self-education and making choices intelligently by taking into account the true complexity of the situation… I am definitively not the best person to talk to if you are searching simple ‘no-brainer’ recipes.
When it comes to the issue of hip subluxation, legs ‘straightness’ and crossing, spasticity and contractures – you have to understand that the medical authorities have the best intentions.
Yes, they usually use scare tactics when talking to you, and, yes, they are quick with a knife and toxic injections whenever they see your child crossing the marks they have drawn– but they do all this not because of being “evil” but because they honestly believe that their actions is the best way to ensure the best quality of life for you and your child under the constraints set by your child’s Cerebral Palsy condition.
The doctors you meet are logical and consistent within the body of knowledge they have and within the anatomical analytic toolbox they use. They interpret the developments of your child according to the paradigms they learned in medical schools and according to the experiences they have accumulated throughout their professional career…
There is only one problem … although a giant one … their logic is based on a keyhole view that reduces the true complexity of your child’s condition and developmental evolution to a bunch of primitive recipes.
It’s quite mind boggling that at the largest worldwide conference on Cerebral Palsy you find out that 100s of professionals presumed to be the best in the world mull over the same subjects over and over again – surgery, Botox, baclofen; surgery, Botox, baclofen – like a broken record…being apparently oblivious to the futility of these interventions.
Of course, it’s partially due to the fact that manufacturers of Botox and baclofen pay the flight, accommodation and attendance fees for everyone who does presentations about their products… but anyway – seeing seemingly intelligent people being unable to break away from the same three primitive tools is distressing and sad.
In order to understand why this happens, where the systemic flaws in their judgment come from – you need to educate yourself.
I want you to realize that whatever shows up as the product at the end of the funnel is defined by the way the funnel is set and shaped.
I want you to realize that unfortunate lack of progress in Cerebral Palsy rehabilitation is pre-destined by the anatomical analytic toolbox that medical pros use…
Ok, I am jumping a bit ahead of myself here..
Let’s proceed to the overview of the Hip Subluxation in Cerebral Palsy series: Video 1 in the Hip Subluxation Series presents the first fundamental framework: “Cerebral Palsy is a developmental disorder of posture and movement where the key limitations are defined by Transanatomical challenges.
When medical world looks at Cerebral Palsy via simplistic anatomical lens – what I call Anatomical Analytic Toolbox that is based on measuring Ranges Of Motion and evaluating Alignments – they inevitably arrive to flawed conclusions that result in disastrous outcomes especially for quadriplegic kids.
Effectively the usage of simplistic anatomical lens creates the situation where upon seeing a race car made for agile performance but experiencing problems – instead of starting to figure out all the fine parts and gears and balances and how these fine parts work together in the long and complex kinematic chains – they start chopping this wonderfully complex race car trying to reduce it down to a handcar that rolls along the straight rails…
(I know that most of my readers are mothers and I am at risk of not resonating too well with this last engineering analogy – however, I couldn’t help myself. I guess I visited way too many car and engineering museums this summer in Germany where we went with my son during his school vacation.. :-))
Video 1 explains the difference between Transanatomical interpretation of legs mobility vs. a standard anatomical interpretation based on conventional Range-of-Motion (ROM) framework.
In fact you’ve been hearing the ‘Wrong Place/ Wrong Movement’ descriptions from me for a number of years already. Well, Transanatomical framework is more accurate description of this phenomenon.
I think that Video 1 is of substantial extra value for your understanding comparing to the ‘Wrong Place/ Wrong Movement’ framework because the Transanatomical approach is more formal and you can see how the Transanatomical analytic toolbox fully absorbs the classic ROM interpretation.
During those few days that Video 1 in Hip Subluxation video series was published on the blog but did not have the annotation – I received quite a few comments –here in the blog, via Facebook and via e-mails to ABR centers.
It’s interesting – that there were 2 classes of comments:
- ‘Wow, thank you’ – now I am starting to understand my child’s condition a lot better by seeing a big picture…
- ‘Well, yes it’s interesting’– BUT – I want to hear the specifics about the hip subluxation and dislocation…
In the past – the second type of comment used to make me really frustrated: “Gosh, isn’t it obvious that without the change of the entire framework we’ll be back to square one and have nothing to add to the mainstream? I mean, if you put a raw meat pie into the oven – don’t be surprised that you don’t get a sponge cake as the end product…. It’s seems natural to me that if you are unhappy with the outcome – not getting the cake you wanted – it makes perfect sense to re-check what was put into the oven to begin with..
And isn’t it self-evident that once there is a superior analytic toolbox – we are able to go much further in our practical actions?”
However, that was the grumpy old me – the new me is different :-)
I have recently read about the critical differences in learning styles. In short it turns out that some people are “What?” type – whose approach is “Give me a framework that covers the issue and I’ll figure out the practical details myself”. Well, obviously that’s who I am and that’s my natural worldview that could be called ‘descending’ – from theory to practice. However, apparently there are also the “How?” people – the ones who want the practical details and the exact substance first and only after finding comfort in tangible tools and specifics they are ready for the question “What’s the larger picture?”
Well, I don’t belong to this type – but at least now I realize that these people simply have the opposite learning style – ‘ascending’ from particulars to generalities.
So, yes – these series on Hip subluxation do have a lot of the particulars as well – but those are in the last videos … Sorry my dear “How” readers and viewers :-)
As a compromise to “How” viewers who want the video series on “Hip Subluxation in Cerebral Palsy ” to actually talk about ‘hip subluxation’ – I am going to break the order a bit and publish the Video #3. “ ‘Hip Subluxation’– what is it exactly? Clearing the confusion between parents’ perspective and medical interpretation.”
This video explains the essence of very specific narrow ‘X-ray’ based ‘diagnosis’ of hip subluxation as the medical world sees it and then compares it with the extended developmental perspective that I see from the most of parents.
This confusion is absolutely critical – because in reality you and a medical pro look at the same area and the same manifestations; you then agree on the name for those – calling it ‘hip subluxation’ – but at the end it turns out that you and the medical professional on the other side of the table – speak different languages and put completely different meanings into the term ‘subluxation’.
Exposing this confusion it would have been easy if that was a proverbial case of comparing apples to oranges. But in this case the misunderstanding lies deeper.
To give you the idea, I’ll use an analogy: As if both of you were looking at, say, a door – any door. When you are thinking about doors your scope is broad – you think of doors either being wooden or made of metal, large and small, internal and external and so on – very multifaceted. Quite naturally you think that all the other people perceive the idea of ‘a door’ in the same way including the doctor on the other side of the table. But that’s the caveat – without you ever realizing it the doctor has one simple criterion – ”the doors that have a color that is brown and darker are unsafe and have to be repainted” and the reverse one “any door that has a color lighter than brown is a good door”
Anyway – I think the Video #3 is going to be welcomed both by “What?” and “How?” viewers.
Next video is practical as well:
Hip Subluxation in Cerebral Palsy. Video # 4.“ ‘Hip Subluxation’– Why so much attention? The Truths and the Myths.”
This video touches all the sensitive points – the issue of possible pains; leg shortness; risk of dislocation etc.
It’s a lot of subjects to cover – and it wasn’t easy for me to stay on course…
Even though I had very concrete bullet points in front of me I periodically went off onto some more general explanations as well.
So after filming the Version 1 – I ended up thinking that it might be too long-winded for the “How?” viewers – and gathered my enthusiasm to produce the Version 2 hoping to do better.
So the Video #4 .“ ‘Hip Subluxation’– Why so much attention? The Truths and the Myths” exists in 2 versions . I think both are of value for you where Version 1 has more of the larger context references and Version 2 is done with the attempt to be more concrete.
However, I think that the Video that is going to really appeal to my distinguished ‘How?’ viewers is the Hip Subluxation in Cerebral Palsy. Video #5. “Case Review based on a home video” Part 3.
Why Part 3? That’s where I really went into a Question and Answer format taking the actual questions asked by Emma’s mom: “Are the recent transitions being a good thing or a bad thing? Can we fix this? Will her hips and legs ever be straight? Will her leg discrepancy eventually fix itself?” – adding a bit more ‘spice’ to them and giving the answers.
Again, in my personal opinion of an individual with a ‘descending’ learning style where the big picture comes is the key – the best of way to understand my answers is to watch the earlier videos first.
However, I respect the opposite learning style as well and maybe for a “How?” person it is more productive to see the final answers first and to unfold the preceding story afterwards. It’s up to you – whatever suits you better.
Clearly whenever there is a Part 3 there have to be Parts 1 and 2 in existence. And sure there are.
In fact the entire series ‘Hip Subluxation in Cerebral Palsy’ consist of three clusters:
Cluster 1. Transanatomical challenges – the essence of Cerebral Palsy – in any area of the child’s body.
No matter what particular plane or joint or movement we look at – Transanatomical approach is the framework that allows to make sense out of the developmental challenges that your child experiences.
These are the Videos #1 ‘Transanatomical nature of hip problems.’ and #2 ‘Rainbow Principle of Improvements for the lower extremities in Cerebral Palsy.‘
These videos use the particular example of hip subluxation as a bridge to introduce a more general reality – the transformations of the legs in Cerebral Palsy follow the ‘United 12’ principle – all 12 elementary mobilities of the legs (Each of the 3 planes x 2 directions within each plane x each of 2 legs) always respond at once as a connected system.
That’s the most practical outcome of the Transanatomical understanding of Cerebral Palsy.
How more practical could it be?
‘United 12’ (‘U12’) principle points out that when you try ‘stretching’ the leg in a single direction – the one that you think your child should become more mobile in – you end up affecting the remaining 11 mobilities at the same time. Unless you realize – you end up having no clue on what you are really doing and what real consequences your actions are going to have – True Positive or True Negative. Without the understanding of United 12 principle – you lose and connection between cause and effect and just shoot blindly in the dark..
Isn’t it very practical?
To complete this big picture understanding I have also added an extra Video #0 “Cerebral Palsy Deepest Hidden Secret –How the choice of Analytical Toolbox pre-destines your child’s future. ” that goes even further to the origins and explains why the choice of Analytic Toolbox – advanced Transanatomical or conventional Anatomical – holds the key to your child’s future. Wrong choice – simplistic Anatomical Analytic Toolbox – leads to simplistic interpretation, which in turn leads to simplistic and brutal interventions. Try to fix a race car with a hammer and a chisel and you’ll end up never going beyond the starting line.
It’s the Anatomical Analytic Toolbox of ROMs and alignment calculations that pre-destines the unholy trinity – surgery, Botox, baclofen – that defines the mainstream ‘official’ treatments landscape for Cerebral Palsy.
Cluster 2. Videos that dig into the current state of affairs around the hip subluxation problems.
In this cluster I use Emma’s case example to illustrate the most common problems as wells as the truths and myths about hip subluxation.
These are Videos # 3 and #4.
Video #3: “ ‘Hip Subluxation’– what is it exactly? Clearing the confusion between parents’ perspective and medical interpretation.”
Video #4 .“ ‘Hip Subluxation’– Why so much attention? The Truths and the Myths” – two versions. It’s up to you to decide which version is closer to your learning style but I suggest to study both anyway.
Cluster 3. individual Case Review – using the analytical tools and knowledge presented in the Clusters 1 & 2 for the analysis of Emma’s case – specific manifestation of legs/pelvis mobility and alignment.
Video #5 turned out to be long – in this video I am actually going through all of the 23 observations and 18 analytical statements presented by Emma’s mom in the original home video and add my comments linking these specifics to the bigger picture you learned through the previous videos.
Of course, sometimes I go back and forth and sometimes I go on a tangent by adding some extra educational references for you – that’s why the Video #5 ran for more than 1 hour and I had to split it in 2 parts for easier viewing.
But then again – after finishing Parts 1 & 2 I still had a feeling that I can do a better job of being more concrete and compact answering the concerns voiced by Emma’s mom – that’s the Part 3 of Video # 5 where I try to keep on course tightly.
Well, that’s the overview – I’ll try to add some brief annotations of each video contents as I publish them – but that depends on how busy I am going to be.
I think that even with this general overview you are well equipped to know what homework is to plan for.
As always – I am most open for questions and opinions – I hope these videos are going to help raising your “fear-resistance factor” and contribute towards our main goal – assisting you on your journey of becoming a competent and confident therapist for your child.
I hope you’ll enjoy this educational journey…