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 :-) …
I hope you did some reading :-), let’s go on further:
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.
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” –
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
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.
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>…
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.
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.
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
Palsy Peacenick’s’ Field Guide. Tip # 4
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
Well, that’s a major mistake, a wrong
criterion, to be precise.
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’?
Palsy Peacenick’s’ Field Guide. Tip # 5
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.
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 ?
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
The choice is yours, I am just helping you to visualize and
verbalize it for yourself.
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
hurts your emotional state more than being indecisive and constantly switching
following the opinion of whoever you talked to on a given day.
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
How do you
achieve self-confidence without being a ‘pro’?
I said it many times before:
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..
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.
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.
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
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...
P.P. S. The Ball Rolling Effects post and videos -- please find it below on the page:
And I repeat the Links for Videos:
Video 1: http://www.screencast.com/t/NDRhNDM2NmI
Video 3:http://www.screencast.com/t/OGJhZWI1MzUVideo 4: Green Christmas in Singapore: http://www.screencast.com/t/N2QzZDA2ZD