Previous month:
December 2009
Next month:
February 2010

January 2010

Cerebral Palsy Peacenick Practicalities: Standing Frame –out of ‘Hawks’ weapons cache and into ‘Doves’ nest. Part 1

It’s time to move from declarations and outline of the ‘Cerebral Palsy Peacenick’ philosophy to the practicalities.

Since most of the ubiquitous tools for special kids either come from ‘Hawks’ or from ‘Sensory’ people [who are just plain oblivious to biomechanical consequences of their ‘stimulating the nervous system and the brain’ actions] – we need to discuss the possible conversion: hence the title – “Cerebral Palsy Peacenick Practicalities

 I could have also called it: “Beating swords into plowshares”; “Turning Tanks to Tractors” or “Morphing Spears into Spades” or anything alike – I hope I’ve got the point across...

I came of age at the end of so-called Cold War and remember well the conversion attempts back in the late 80s in Russia – the factories that made landmines converting into the saucepan manufacturing…

Well, I must admit, it did not work very well – apparently even ‘a saucepan’ production requires some specific expertise, which is not exactly sharing the same platform with a landmine even if machinery is similar…

Anyway, I hope to fare better :-)– and the 2nd Video is very much discusses the ways how the classic ‘hawkish’ approach to a standing frame could be upgraded significantly into a ‘peacenick’ version.

However, In the 1st Part I took the liberty of touching the larger questions that resonate with the previous post on GMFCS curves – facing the reality in sharp precise details rather than blurring into a shapeless amorphous cloud.

I used the standing frame use example to repeat the fundamental deepest  developmental challenge of any child with Special Needs and Cerebral Palsy especially– ‘A Win-Lose Dilemma’.

Obviously this is not an ‘appealing’ or ‘attractive’ name to begin with, however, I do plan to stick to it since it reflects the reality very well.

I fully understand and accept that at a certain point a familiar strategy of “let’s keep it vague” might be a helpful one. For some people this approach works really well – they just look at the facets of a child’s condition that they are able to relate to and ‘chop away’ anything uncomfortable.

However, if you are one of those people you’d be a very unlikely person to show any interest in Do-It-Yourself home rehabilitation altogether, let alone being the reader for this blog. These people with a truly selective vision, capable of culling everything uncomfortable are a rare breed; and actually, the more studies/education you’ve done in your life – the less likely you are to be such a blessed one.

For all of you with a significant domain of rationale within a personality profile – this ‘blissfully unaware’ stance is not available. You wish you’d stop thinking about dreary expectations – but you really can’t.

So what happens as a result? – You find yourself on a swinging pendulum – from exaggerated optimism to equally exaggerated concerns and fears. You are easily excited (especially when a child is still young) but you are easily scared as well. That’s a heavy emotional tax that zaps one’s energy really fast; and as the years go – excitement vanishes or translates into a pure chase of “last hope” while the scares become more and more real, especially with under consistent ‘hawkish’ pressure.

That’s the cost of ‘blurring’. It’s a universal trait of a human nature that we are most stressed and demoralized by some vague gloomy threat, where the vagueness itself makes it seemingly omnipresent and incapacitating as a result.

On the other hand, we are generally pretty good in standing up to a well-defined adversary or challenge. That’s why most of today’s practical psychology is about making those fears and concerns from amorphous into the clearly articulated ones.

So, once again, I emphasize the same point – I am strongly “pro-uncomfortable-truth” that clarifies the situation and allows to devise an actionable strategy of coping, management and approaches to ‘beating the odds’.

If you are sharing the same stance – I hope that you’ll find the videos helpful and educational…

 

P.S. Thanks a lot for your questions and comments to the previous posts made in January. I haven’t answered much yet but do plan to do that in the couple of next posts. I believe most of the questions and comments are of value for many parents – so it would be better to answer the questions in a more public way.

So for the next few days – please send your questions…

P.P.S. The other night I had a ‘Jackie Chan’ dream – (weird isn’t it? – considering the fact that the last time I watched his movies was at least 2-3 years ago…) – and woke up very surprised trying to make sense out of it…

My first thought was to interpret it as a sign of striving for shorter answer – since Jackie Chan is known for being extremely quick – but I wasn’t sure whether I’d be able to live up to his standards of brevity….


Getting serious... GMFCS -- the acronym all of you should know and understand

GMFCS curves – the fundamental benchmark: No more ‘wiggle room’ and ‘muddy waters’ for the prognosis of ‘hawkish’ interventions.

Words of caution/ discretion advised:

LONG POST WITH A COUPLE OF EXTRA LINKS TO MORE READING…

I couldn’t manage to make this post light-hearted. If you feel that harsh exposure to reality is going to make you feel uncomfortable – probably you should skip this post.

If we are any serious in approaching the Cerebral  Palsy 'peacenick' vs. ’hawk’ dilemma, the first thing we should be talking is how to evaluate and compare the performances and outcomes – otherwise we’d end up with a divide that is just purely ideological.

As the very first step we need the benchmark… Without the benchmark to compare to – any meaningful evaluation is difficult – the winner will always be defined by the loudest mouth and the strongest authority backing.

For many generations of families affected by Cerebral Palsy that was the unfortunate reality. The entire Cerebral Palsy field was defined in super-blurred categories of ‘mild’, ‘moderate’, ‘severe’ – where it was impossible to pin down any true efficiency.

These muddy waters created a very peculiar situation that most of you are familiar with.

On the one hand, the literature and conference proceedings always had the same gloomy prefaces and intros: ‘the problems are still unsolved and poorly understood’; ‘general prognosis remains grim’ etc. – describing very pessimistic overall picture.

On the other hand, if you were to meet any particular, local medical specialist – you were most likely to experience a lot of pressure for ‘hawkish’ methods: each and every of them would beat oneself on the chest with examples of incredible progress children achieve following his interventions and at the same time drawing some really horrific pictures of the future for those ‘infidels’ who dared to doubt the ‘hawkish’ path.

Globally it was acknowledged that there was not much known and much to be done for children with Cerebral Palsy, motor function outcomes are unpredictable and not necessarily being better than the natural evolution without any forceful intervention; however, locally you were most likely to meet an ‘alpha-hawk’ – a ‘star’, a doubtless guru preaching the absolute necessity of ‘hawkish’ interventions who’d be looking for adoration and consider himself a real difference-maker…

Continue reading "Getting serious... GMFCS -- the acronym all of you should know and understand" »


“Ugly Truth”–On Orthopedic Surgeons and Romantic Comedies… Don’t laugh, please, – I am serious :-) – Part 1.

The birthday post...Philosophical, I guess...

 

In the latest romantic comedy I watched … (Oops – Did I just confess to this ultimate sissy anti-masculine sin – watching a romantic comedy? :-) … I guess I did – but hearing no negative reactions upon confiding in my readers of hating the greens and being nauseous on broccoli soup – I either should assume an extreme tolerance to my weaknesses (nice and self-flattering way of thinking about it) or equally profound indifference to my character traits non-related to ABR (not so self-flattering way…)…

Either way, I figured I am safe with acknowledging another sinful deed of mine. (Actually, the only time I do watch videos other than ABR assessments or educational materials – is on the plane; and the only thing I can watch while on the plane is the one that takes zero intellectual effort: enter romantic comedies :-)…

Usually I do not even remember the names of those movies but this time was different. When I started watching the one called “Ugly Truth” everything was as usual, nothing remarkable –busy female executive looking for a perfect romance and expectable collisions…. BUT 15 min into the movie it happened –  Mr. Right Guy appeared. If you ever watched a comedy you should know this classic character – the-ideal-guy-smart-gentle-and-caring-who-is-perfection-materialized-but-still-never-gets-the-girl...

 Who was The Mr. Right Guy? Hold your breath… The Orthopedic Surgeon.

I nearly choked on my cashews… and started to really follow:

By a funny cat-related accident the lead girl falls off the tree hurting her foot and the neighbor in her upscale residence who rushes for help happens to be an Orthopedic Surgeon – he fixes a bandage on the girl’s foot and with a perfect bedside manner assures her that nothing is broken and she’ll be fine…

Well, no it’s time to leave the movie and get back to our own realities…

In the world of families of kids with cerebral palsy we are so used to think of an orthopedic surgeon as that ultimate hawk, the scare-monger who starts talking about massive surgical intervention years in advance instilling an enormous stress and pressure on most of the parents and frequently even threatening with parental rights removal, – that seeing one in the movie as an unquestionably positive persona, Mr. Right Guy and a ‘dream husband’ – was quite a surprise to say the least.

This brings us to some important clarifications.

The orthopedic surgeon who tapes the twisted foot – is definitely a positive character who does a highly needed and admirable job. If the girl in the movie would have broken her foot and he would have fixed it with screws and titanium plates – fantastic, no sarcasm here at all.

These are Emergency procedures.

High quality emergency care is a cornerstone of any civilized society and I have an absolute and utmost respect for the orthopedic surgeons who are the ‘traumatologists’, i.e. the ones fixing broken bones sewing together torn ligaments or muscles.

However, I still do maintain that PLANNED and FORCED Orthopedic Surgery for kids with disabilities is the acknowledgement of intellectual defeat and failure of conservative methods and could not be regarded in the same league of respect as emergency care.

That’s where things get complicated and some important paradoxes emerge.

Paradox #1

Extremely valuable emergency care role of orthopedic surgery creates that justified positive public image for the entire community of orthopedic surgeons.

Credibility and high authority of orthopedic surgery in the public eye and among other medical professionals stems from the emergency care BUT unfortunately the emergency care roots carry a fundamental flaw, a ‘birth defect’ or a ‘neonatal injury’ if I may say so – the mentality of a quick fix put together with a ‘high’ of an immediate result.

This quick fix mentality that is perfectly fine for extremely tight time budgets of the emergency room is detrimental for the decision-making and toolkit development for the long-term challenges.

Look at the sprinters and at the long-distance runners in the track and field – there is no resemblance between them. Bulky huge guys do sprint, and the light-weight ones run marathons. Everything is different about them – breeding, training, mindsets, performance milestones…

The paradox of orthopedic surgery is that it borrows its’ credibility in sprint races –no one denies that– and leverages to wrestle in the authority position in respect to the marathon training.

Paradox # 2.

Another paradox is extremely important as well.

All the orthopedic surgeons feel themselves as the members of the same professional community. The orthopedic surgeons in emergency care – the ones who fix broken bones and torn muscles – enjoy respect and even adoration. Obviously, their colleagues from the Planned Surgery field – expect the same.

And in fact, if one looks from within their professional cocoon – they feel that they have every right for the same adoration if not a greater one. Why?

First, technically the multilevel surgeries performed on kids with cerebral palsy are a lot more technically challenging than most of the emergency jobs. The surgeons you face as the parents of children with special needs are the ones who have a skillset that is on average greater than the one of an emergency care surgeon.

Second, these Planned Surgery specialists consider themselves as the ultimate ‘do-gooders’ within their professional community. Again, looking from within this aspiration is perfectly understandable – they have traded an ‘easier’ life of a ‘regular’ orthopedic surgeon to a more challenging professional path of working with special needs patients.

I hope you are seeing the twist …

The fundamental problem is: A lot of orthopedic surgeons do care about your kids but they stem from emergency profession and carry the ‘hawkish’ tools only.

That limits their options and creates extreme tunnel vision.

But the things get more complicated because they borrow the credibility from a ‘simpler’ branch of their professional community; being technically superior they expect ‘double’ the respect of the regular orthopedic surgeons, which makes them completely incapable of even thinking of changing their way.

Hot air balloons were Ok when one wanted to travel between nearby cities. Hot air balloons were highly intuitive – they are lighter than air. But they had limits, which made them not suitable for intercontinental flights. Did the long-distance flights emerge from within the hot air balloon community? – No, they stemmed from the counterintuitive approach – the aircraft that is heavier than air – the approach that was heavily ridiculed and laughed at.

Intuitive doesn’t make the intercontinental flights – one needs a radical change of mindset.

One thing is for sure –sprinters cannot teach marathon runners.

There could be discussions and various approaches among marathon runners but surely the advice of a sprinter is of little value for that. ..

TO BE CONTINUED….

 P.S. By the way, the girl in the movie was finally wise enough to choose another guy -- not the Orthopedic Surgeon ... (Yes, yes -- I felt a relief as well...)

P.P.S. That made me thinking -- will I ever live until the day that an 'ordinary' ABR professional will substitute the orthopedic surgeon as Mr. Right Guy -- That was the philosophical birthday part :-)....


Part 2."Hawk" or "Dove" - who are you? Cerebral Palsy Peacenik Manifesto...

Well, your chances of convincing a surgeon in viability of ‘peaceful’ options like ABR are as realistic as talking a high rank military person into giving up his shiny new weaponry.

“What do I do then?” – You might ask me. Unfortunately, I do not have simple answers for you…

You need to be creative and as diplomatic as possible. Things might be tough, especially in some countries or areas where the ‘old guard’ still has a strong ‘hawkish’ grip.

However, the tide is gradually turning – recent conferences on Cerebral Palsy show that “The System” gradually starts being more receptive to the ‘unorthodox’ parents.

As an illustration I encourage you to read the paper by Prof. Rosenbaum from CanChild Project that I have put for you on a separate page in this blog long time ago… Unfortunately, the statistics shows that very few of you actually proceeded to read that page in the past – hopefully this invitation will work better :-) – SEE THE LINK BELOW OR LOOK TO THE RIGHT HAND COLUMN OF MY BLOG…

 Well, I guess I am sounding not so much as an energetic Peacenick here but more as a grumpy old man :-) … By the way it’s a curious example – What do the old men do?—Repeat the same moth-eaten stories and advice over and over again to anyone who comes into vicinity.. What do I do? – Repeat the same thing over and over again, hoping to get the message through… Well, hopefully with this disclaimer I’ll be excused for any similarities with grumpy old chaps :-) …

http://www.typepad.com/site/blogs/6a00e54edf0673883400e54eca51d68833/page/6a00e54edf0673883401156ef1f379970c/edit

I hope you did some reading :-), let’s go on further:

First of all you really need to make your own stance absolutely clear – are you ready to be a true ‘Peacenick’ or is there a ‘hawkish’ element in the way you yourself evaluate your child’s condition? Marrying the two mindsets is next to impossible.

You have to ask yourself repeatedly whether you are really sure you want to choose the ‘peacenick’ way. Remember,  the ‘hawkish’ stance is a lot less labor-intensive and, obviously, it is not easy to ‘swim against the current’ – all that making the real ‘peacenick’ stance far from easy to sustain…

Fortunately, as I already mentioned – the icecap started to melt – things are slowly getting easier because the healthcare and disability care system are faced with major reforms.

The gradual turning of “The System” towards a parent of a child with special needs manifests through increased acceptance of so-called ‘family-centered’ approach, sometimes known as ‘patient-centered’ approach.

‘Family-centered’ approach is very much a new mantra of healthcare; supporting it, at least verbally, is the sign of being an open-minded and progress-oriented medical professional.

In practical terms the rhetoric  at the recent conferences goes as far as saying that  “the family is the ultimate decision-maker” together with “accepting the fact that different families will have different strategies of coping with child’s disability and we have to respect their decision even when we feel like disagreeing with it from a professional <read ‘professional’ as “hawkish” – L.B.> background…

I am paraphrasing the quote from the most recent International Conference “Global Status Quo on Cerebral Palsy” that took place in Holland in October 2009.

In the U.S. the family-centered approach is stronger than in Europe and rest of the world.

It’s encouraged quite enthusiastically by AHA (American Hospital Association), which is one of the main governing bodies in the medical care.

‘Cerebral Palsy Peacenick’s’  Field Guide. Tip # 1

Hence, if you find yourself under ‘hawkish’ pressure – cite ‘family-centered approach’ and quote authorities. Most of the local ‘hawks’ should back off. Being seen as an ‘anti-family-centered’ is a stigma that most of them would like to avoid. Being ‘anti-family-centered’ is equivalent to acknowledging oneself as a close-minded retrograde who is out of synch with the modern day tendencies.

<It somewhat reminds me of American court drama movies where the defendants routinely cite Fifth Amendment not to speak against themselves, or appeal to the First Amendment and so on. So ‘Family-Centered Approach’ most often should do the same for you – namely allow you to be the ultimate decision-maker for your child and fend the ‘hawks’ away if you really want to go the ‘dove’ way>…

‘Cerebral Palsy Peacenick’s’ Field Guide. Tip # 2

DOCUMENT what you do! BUILD YOUR CASE, PILE UP THE PROOF THAT YOU ARE A CAPABLE PARENT.

Effectively, if you decided to go the ‘dove’ way in the ‘hawkish’ environment –then you need to demonstrate (to justify a ‘family-centered approach’) that you are a responsible parent who has the consistent ‘coping’ strategy, which might be ‘unorthodox’ but you are closely monitoring your child’s well-being in the ways that are in agreement with your pediatrician and provide excellent care.

However, you should never forget that if you decide to resist the ‘hawkish’ pressure – you are now a defendant. That’s very important. You need to have protocols in place and you need to document your good care as much as possible.

You have to realize that once you decide to choose your own way, you are not just a free citizen anymore, who is innocent until proven guilty. It’s the other way around – you’ll need to pile up the evidence that you are a responsible parent, who closely monitors child’s condition. I’ve heard too many stories of ‘hawks’ gone wild especially in European countries – taking children away, stripping parental rights etc. – to repeat this advice over and over: document the quality of your care and document blunders from ‘hawks’.

True, – It’s not a pleasant position to be in, I can hear you saying: “Why? I am a responsible parent! I do care about my child’s well-being more than anyone else in the world– exactly why I do not want him to be exposed to brute force… I do not want to wait another 20 years until today’s innovative approaches will make their way into a mainstream healthcare, that’s the reason I am looking for alternatives today, at my own expense …” – All of the above isl true, but that’s a reality – as long as the mainstream healthcare for Cerebral Palsy kids is predominantly ‘hawkish’ – you need to watch your back and build the strong case for yourself in case you are put under pressure.

‘Cerebral Palsy Peacenick’s’ Field Guide. Tip # 3

Another fundamental yet simple move you need to do if you happened to be under too much of ‘hawkish’ pressure – just change your doctor. It sounds as a blunt advice but  it could make all the difference in the world for your peace of mind and the level of stress you are under.

Doctors are people as well – some of them are more likely to bully you and some of them are nicer people without a demigod ego.

I frequently bring the example of one family from Greece who went through 8 neurologists until they found the one who agreed that the child was too doped on regular anti-seizure doses and went ahead and cut those meds to absolute minimum.

If your stance is strong enough, you can do the same. Find a doctor who is humble enough to give you the main role, acknowledging that you are the one closest to a child and have the best insider’s knowledge of what works and what doesn’t. In other words, you should look for a doctor who is willing to be a consultant for you – not a judge and an enforcer.

‘Cerebral Palsy Peacenick’s’ Field Guide. Tip # 4

All too often I see families doing the same mistake – searching the ‘most prominent’ doctor, the ‘top professor’ thinking that such a choice will ensure the best care.

Well, that’s a major mistake, a wrong criterion, to be precise.

A prominent, acknowledged specialist is usually the one with a massive ego, a dominant ‘hawk’ in the ‘hawkish’ environment. If there is anyone who is most likely to listen to you the least – that’s a medical professional with established authority.

If you want to become a ‘dove’, why would you voluntary go to the nest of the largest ‘hawk’?

‘Cerebral Palsy Peacenick’s’ Field Guide. Tip # 5

Another mistake that some parent make is the opposite – staying too close, not going outside the local area.

If you are unlucky, you’ll bump into a local specialist who is too weak as a personality to contradict any authority. Such a person will deal with your child by religiously following the textbook without having enough flair or ‘guts’ to have an opinion of his own and listen to you meaningfully enough. In such a case – you need to start searching somewhere outside the comfortable geographical zone, maybe traveling to a different city. I understand that might be a challenge logistically but that’s where you need to decide what is more important for you – convenience or peace of mind.

‘Cerebral Palsy Peacenick’s’ Field Guide. Tip # 5

On top of those decision-making tips, I am strongly encouraging all of you to have as much of information and strategy sharing because between the families.

I meet both kinds of parents: the ones who happily co-exist with their doctors and PTs as well as the families who are really being bullied and harassed. Surprisingly, often enough, these families with vastly different experiences of dealing with a healthcare system might be coming from the same country, sometimes even living not far from each other. That is just confirming what I said earlier – the human factor matters. “The System” might be harsh and authoritative but still there are enough of the nice people within it, you just need to look for them and know what to say.

To sum it all up – I am not saying that it is easy to be a follow the ‘dove’ path in the ‘hawkish’ environment that you are surrounded with – but if you are willing to put some energy and discipline in it – it’s definitely realistic.

However, and I’ll repeat this once again:

You need to make a solid decision based on who you are deep inside:

A true “Dove” whose only path is a non-forceful evolution ?

or

Do you still have ‘hawkish’ side in you believing that it’s the fight to be won where “forcing the ‘bad guys’ into a submission” is a strategy that is worth considering?

The choice is yours, I am just helping you to visualize and verbalize it for yourself.

This decision has to be made – doesn’t mean that you make a single commitment for the rest of your days but you have to decide on your fundamental long-term strategy.

Nothing hurts your emotional state more than being indecisive and constantly switching following the opinion of whoever you talked to on a given day.

‘Cerebral Palsy Peacenick’s’ Field Guide. Tip # 6

Asking a ‘hawk’ about the merits of ‘dove’ strategy?! – Very illogical… However, I see parents doing this over and over again:

“Tell me what I should tell my orthopedic surgeon?” – Try discussing the benefits of vegetarian diet interviewing a hungry lion in his lair…

How do you achieve self-confidence without being a ‘pro’?

I said it many times before:

First: You are the ‘pro’ – no one can learn and understand your child better then yourself. You’ve got the most of the information, and you’ve got the ultimate processing tool – unconditional love..

Second: Listen to your ‘gut feeling’, be true to yourself; do not agree to the options that you feel uncomfortable just ‘not to contradict the other’; or just because everyone seems to be doing things you do not feel right about.

Third – educate yourself as much as possible aiming to reach the level of confidence necessary to be comfortable with your fundamental choice of a ‘peacenick’ or a ‘hawkish’ platform.

Fourth PLEASE do not forget another fundamental element –to educate those around you, especially the immediate family. Talk to them, encourage them to open up and speak out their concerns and their true feelings. Most often they will try to avoid direct and meaningful conversation, escaping the commitment to a decision for as long as they can wiggle out of it. Be persistent – this decision will have huge impact on your own life, the life of your special needs child and the rest of the family for years to come – so it has to be clearly articulated by and for everyone and agreed upon. Unless you inner circle of family and friends ‘buys into’ your choice of ‘peacenick’ philosophy of dealing with your special child – your odds of success will be low…

At ABR – we are here to help you in clarifying your position. Not to ‘push’ you to join us, but to clarify. The ‘peacenick’ way is not easy to implement – so if we ‘push’ you and you join for a wrong reason – it’s going to be a negative experience for both of us and you’ll jump off the ‘train’.

We do not want to drag along the people who have a non-peacenick mindset. We want you to make a decision that you feel you can rely on for years to come without second-guessing.

I am a ‘Peacnick’ in my approach to cerebral palsy and that’s a conscious choice ... I started as a ‘hawk’ like everyone else and it was a long painful evolution of ‘squeezing the hawkish reasoning out of my analysis of individual cases and ‘of eliminating the hawkish elements out of ABR techniques’. Today, that’s my nature.

I am the same in the way I deal with myself – I’ve never taken a single pill in the last 20 years. If I have a headache – I do not compromise by taking some ‘Panadol’ or ‘Aspirin’ or whatever. Neither do I suffer stoically. I look at my headache as the call for action – what hands-on tools and ABR-based instruments I need to pile together to overcome. Same is true for any discomfort that I might have in my body. The idea of voluntarily taking a foreign chemical into my body (‘i.e. the pill’) is so appalling to me that I consider a headache as a much lesser discomfort. I do not impose these extremes onto others but personally I am very comfortable with them.

On the other hand, for instance, I hate greens – veggies, leaves and all that stuff.

I know that greens are good – my grandma made me read any article she could find on benefits of greens and veggies since I was 4 years old – I know my health would be better off if I were to switch to them … But – I hate the taste and the smell and the composition of most of them. If a push comes to shove I can probably force myself to eat those greens for a few weeks but I’ll be suffering because I get nauseous after 5 to 7 spoons of broccoli soup even when it’s pureed, not to mention leek or, God forbid, – cauliflower... :-) Trying to force myself doing these things that are presumed “good for me” I’ll be having so much stress that any metabolic benefits of the greens will be outweighed by the negative emotional state.

Why I am telling you these personal details? – I want to illustrate that you have to make a decision that is congruent with who you are and how you behave in most of the situations. We all have different personalities and personal histories – they all matter. Don’t try to force yourself into the commitment that goes against your gut feelings.

On the other hand, if you simply have questions that are needed for developing better imaging and understanding of how do the ‘peacenick’ strategies work and what are the limitations of ‘hawkish’ approaches – you are very welcome.

Ask questions – as much as possible. Illustrate them with photos and point the arrows at the areas in your child’s body you are concerned with. Let’s talk, let’s discuss – if anything I am looking for a feedback; a dialogue instead of a monologue…

Nowadays I am trying to develop my technological grasp and I am envisioning that within a few months will be able to hold regular Q & A webinars – where you’ll be able to see my computer screen on yours, so I can refer to the illustrations and demos. (They’ll be recordable for those who can’t attend on time)…

Well, it turned into an even longer post this time – the further parts of ‘Cerebral Palsy Peacenick’s’ Field Guide are coming…

Thanks for reading that far :-)

P.S. Thanks a lot for great reviews and response to the Part 1 of the 'CP Peacenick Manifesto' -- it's an honour to work with you...

http://blyum.typepad.com/on_abr_and_beyond/2010/01/hawk-or-dove-who-are-you-cerebral-palsy-peacenik-manifesto-part-1.html

P.P. S. The Ball Rolling Effects post and videos -- please find it below on the page:

http://blyum.typepad.com/on_abr_and_beyond/2009/12/happy-new-year-3-videos-on-good-reasons-for-looking-forwards-with-excitement-.html

And I repeat the Links for Videos:

Video 1: http://www.screencast.com/t/NDRhNDM2NmI

Video 2:http://www.screencast.com/t/OWI4ODllZjkt

Video 3:http://www.screencast.com/t/OGJhZWI1MzU

Video 4: Green Christmas in Singapore: http://www.screencast.com/t/N2QzZDA2ZD

"Hawk" or "Dove" - who are you? Cerebral Palsy Peacenik Manifesto(Part 1)

"Hawk" and "Dove" –Ever heard those expressions before?
"HAWK": http://en.wikipedia.org/wiki/War_Hawk:

The term War Hawk (or warhawk or hawk) has often been used since the War of 1812 to describe politicians or other persons with "hawkish" positions on warfare

"DOVE": http://en.wikipedia.org/wiki/Political_dove

In politics, the term dove refers to person who advocates peace and pacifism, in contrast with a hawk, who promotes war and belligerence.

Peacenik (plural peaceniks) http://en.wiktionary.org/wiki/peacenik

Someone who publicly opposes armed conflict in general, or a particular conflict; or who publicly opposes the proliferation of weapons; a pacifist or dove. The term is pejorative, unlikely to be used by those to whom it is applied.

Have you read that? – “The term is pejorative, unlikely to be used by those to whom it is applied”. Well I do not have such reservations and proudly call myself ‘a peacenik’ in all matters related to Cerebral Palsy.

1000px-Peace_sign.svg
My minimalistic hairstyle, or lack thereof, is misleading :-)...

What do you first think about when you see a 'peace' sign? – Hairy hippies and flower power, right? Well, I am far from that hairstyle – unless I put on a wig :-) – but ….      I am the 'PEACENICK' -- more precisely a CEREBRAL PALSY 'PEACENICK'...

Being a CEREBRAL PALSY 'PEACENICK-- What does that mean? 

I believe that the core fundamental difference between a CP child and a healthy one is the excessive weakness of an entire MyoFascial system of a child with cerebral palsy.

This ‘peacenick’, ‘dovish’ stance is the exact opposite of a mainstream  healthcare approach to Cerebral Palsy, which is led by ‘war hawks’ who are pre-occupied with the ‘fight against’ the selective manifestations of predominant fake “strength” – the spastic muscles, contractures etc.

Do I understand their logic? – Sure, I started out as a ‘hawk’ myself. Anatomy textbooks describe >600 identifiable muscular ‘threads’ within a human body. Indeed in cases of Cerebral Palsy there are some elements among those >600 that appear to be ‘too strong to handle’– contracted and shortened muscle bellies and tendons, as well as the ones that exhibit uncontrolled acceleration (the spastic muscles).True, these ‘rogue’ elements exist and they are indeed interfering with posture and movement...

However, where is the horse and where is the cart?

The modern studies made a serious dent in the justification of a ‘hawkish’ stance by showing that even the most lambasted and castigated among uncontrollably strong ‘bad guys’– the spastic muscles –are fundamentally weak in their underlying MyoFascial build.Indeed, a spastic muscle bundle exhibits a greater torque (“force”) than a healthy one of comparable size and location, which at first glance supports the traditional understanding of their leading disruptive role. But on the other hand, the same research demonstrated that ExtraCellular Matrix, i.e. the underlying MyoFascial ‘fabric,’ of a spastic muscle is many times weaker than MyoFascial fabric of a healthy one.   The force of individual spastic fibers might be ‘too strong’ but their overall composition and ‘build quality’ is too weak.

How do we look at these facts as ‘peacenicks’? – We conclude that spasticity is just another manifestation of MyoFascial weakness.

How do the ‘hawks’ look at this data? –  They disregard whatever doesn’t fit with the scope of the weaponry they already have…

That’s the key question: What do we focus on? –Do we recognize the overall weakness of the underlying MyoFascial ‘fabric’ or do we chase the individual tightened threads fighting them one-by-one whilst disregarding the fundamental weakness of the ‘fabric’ as a whole?

The answer to this key question defines the decision-making, choice of tools and evaluation of any transitional phases.

ABR is the based on deliberate, undiluted, non-compromising ‘peacenick’ approach. Everything we do – whatever new methods or tools are defined by one main axiom: “Nothing Forceful…”

Who are you surrounded within the medical community? – “Hawks”.

Some of them advocate extreme brute force – surgeons; some are less intrusive – manual stretching or orthotic casting… But nonetheless – the difference between those medical branches is like the one between artillery and infantry: different tactical roles but parts of the same military force… Philosophy remains the same – sending light troops first and if they fail to “tame an enemy”, then the heavy troops take over…  New weapons are being developed from time to time, new strategies are designed but the underlying mentality remains unchanged: “Shoot ‘em up those dirty bastards!”
That’s exactly what you see in medical handling of kids with cerebral palsy. A child is being passed through a conveyor belt – from light ‘stretching’ troops when he is young to heavier and heavier gunners: repeat toxic attacks on muscles by Botox; then “small and local” surgeries to cut the tendons or nerves electively; eventually arriving into the hands of ‘master’ surgeon for Multi-Level surgery who goes all guns blazing  – with bone cuts and repositions, metal rods insertions and so on…

It’s also important to realize that a ‘milder’ member of this chain, physical therapist, is conditioned by the system to accept the authority and to be a subordinate of the most intrusive one – the orthopedic surgeon. What else to expect when a leading orthopedic surgeon announces that maybe 30% of mildest CP cases (GMFCS Level 1 kids) will not require surgery over the course of their life? – Gees, what is it – if not the acceptance of intellectual defeat that is being sold as a huge grace bestowed on a child.  

Another thing that really makes my blood boil – I guess I am not a true peacenick after all :-) – as a real ‘peacenick’ I should be able to contain this aggressive emotion – is that “hawks” routinely  use disguise and pseudo sweet-talk that hides the true workings of a certain ‘hawkish’ method.

How about this one, that all of you definitely heard? – “Botox injections relax the spastic muscles”. ‘Relax’ is a nice and comfy peaceful word, correct? – True. The only problem is that the way Botox works has nothing to do with true ‘relaxation’.

Botox is a toxic substance that causes partial paralysis of the muscles. Why you are not hearing this real explanation often? – Well, it’s obviously a lot harder to sell. You are much less likely to respond positively to a suggestion: “Let’s inject some diluted poison in your child’s body – we think he’ll get better because of that…”

That’s why I can’t help but smile semi-helplessly when parents ask me: “Mr. Blyum, tell me something clever about ABR that I can pass to the surgeon to make him stop pushing for hip operation…”

What can I say? They are “guided by the beauty of their weapons” (L. Cohen)…  

Orthopedic surgery has been amassing the ‘weapons arsenals’ for centuries nurturing the ‘demi-god’ culture within their ranks.

Can you imagine being called to meet a prominent general who spent all his life rising through the rank and file, earning stars through military operations and then you open your mouth and suggest … –disarmament!?

Try to convince him that ‘guerillas by night’ are impoverished peasants by day and suggest that investing in better fertilizers,  tools and education might be a better strategy then trying to ‘shoot all of ‘em up’? – Good luck…

Well, your chances of convincing a surgeon in viability of ‘peaceful’ options like ABR are as realistic as talking a high rank military person into giving up his shiny new weaponry. “What do I do then?” – You might ask me. Unfortunately, I do not have simple answers for you…

But I’ll try to discuss some practicalities of ‘dovish’ life of a cerebral palsy ‘peacenick’ in a hawkish environment in Part 2 that is coming in a few days….

P.S. Please make sure that you watched my videos on the effects of Supersoft Rolling ball technique.