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:
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
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