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Deep Thoughts – The Paradox of CHARGE

David Brown

David Brown

Two years ago in Orlando I talked about the biennial CHARGE conference as a pilgrimage and all that that involves – a journey seeking truth, inspiration, help, growth, comfort & security. I mentioned that coming to the conference also involves giving up the security of your familiar home base and community, giving up part of your own secure identity, and stepping very exposed into an immensely over- stimulating and in many ways out-of-your-control environment. Everyone in the room had heard good news and bad news and confusing news during the meeting, and as always I issued a caution not to head home and immediately make sudden big decisions, but instead to ponder things and let time and your familiar environments work out what you have really gained from the conference.

The point of this talk is to try to sum up what seems a major important theme of the entire meeting, and what finally struck me was the many paradoxes inherent in CHARGE. Back in the mid-80s in London I once met two different pediatricians in the same week: at the mention of CHARGE one said “Oh yes, children with CHARGE Association. They always develop very badly don’t they?” and the other said “Ah, they are such smart kids and they always do so well developmentally”, and I knew then that I was not the only person confused about the condition. By taking part in, or listening to many conversations over these few days in Arizona I noticed the contradictions that kept cropping up and so this list of CHARGE paradoxes was born. The list is long (in fact about 5 paradoxes were cut from the talk due to lack of time), I’m sure you can all add extra ones, and they are not in any order other than the way they came into my sleepy mind, except the last one which is last quite deliberately.

• That an organization founded by 4 professionals should so quickly and so completely have become a model of family control and family advocacy – a great tribute to those 4 professionals but also to that surprisingly small band of parents who have been willing to step up to the plate with such commitment.

• That something that so isolates and stigmatizes a person and a family can also lead to such an intense feeling of family and fellowship on a huge scale as we experience at these conferences every 2 years, and on Face Book almost any time that we need it.

• That people so frequently regarded as non-communicating, or at least as having significant problems with developing their communication skills, should so often be such powerful, forceful communicators.

• That people with such poor recall and a range of difficulties with long and short-term memory, should have such obsessive, almost photographic memories.

• That people who are so fragile and weak and vulnerable, can yet be so strong and resilient and determined and resourceful.

• That people who can be so frustrating and challenging and impenetrable – can be so very rewarding to know and to work with.

• That people who are so self-absorbed and disengaged can suddenly show a startlingly direct sense of awareness and empathy and caring for another.

• A very personal paradox – I just adore spending time with children and adults with CHARGE – but I am eternally grateful that I don’t have one!

• That people who make only slow developmental progress, and who fall so markedly behind their peers, should in fact be all the time achieving success over unimaginable challenges. That Olympians like these people should, from the very earliest stages of their lives, experience so much criticism for not achieving more, more quickly, and should be found lacking by those who have never and will never achieve a fraction as much, is not just a paradox but an outrage!

• That people who need such very careful handling should also relish the roughest ‘rough & tumble’ treatment you can give them.

• That people with the most severe balance issues imaginable should love being upside down, or precariously balanced.

• That people with such vulnerability should contain and exert such power over others. This came out very strongly in Jacob Hartshorne’s presentation when 3 of his workers talked about what their involvement with him had done to them in terms of lessons learned and characters transformed.

• That people with so little, and so little intact, and so much missing, should use everything that they do have so completely and with such focus and tenacity that it puts people like me to shame. How about you – do you use what you’ve got to anything like the extent that your child with CHARGE does?? Impossible.

• That people so socially clueless and unaware should cause their parents to say things like “I fully realize that she knows exactly what is going on. Her actions are deliberate. I also realize she knows how to play me, and everyone else, like a finely tuned instrument”, or “Some days I struggle to find the balance on what she really needs and when she knows how to play her cards right to get what she wants from me. Oh wait… I have a toddler…they are masters of manipulation.” (actual quotes from Facebook posts)

• That these Foundation conferences have become less necessary due to the intense activity on a growing number of Face Book pages and the unparalleled support that they offer – yet the relationships being built and developed on Face Book have made this conference even more keenly anticipated than usual and the logical outcome of those past 2 years of interacting by computer. How wonderful for us techno-phobes that there is still no substitute for being face-to-face with people, in the same room, at the same time, able to hug each other and laugh together!

• That such damaged and impaired people should in fact be such complete and magnificently rounded, larger-than-life personalities.

• That CHARGE has such a very distinct phenotype and such similar characteristics (as parents very often tell me after I have presented, “It was MY child you were describing”) should also show us such a very wide range of unique and distinctive personalities.

• The “courageous paradox” for parents is treated well in Tim Hartshorne’s article ‘Mistaking courage for denial: Family resilience after the birth of a child with severe disabilities’ – how to love your child unconditionally and accept them as they are even if they never change, while also hoping for change and striving to help them become as able as possible.

• That a tragedy that throws all your plans and your expected path of life into chaos should yet also be a gift that carries you further in your development than might ever have been possible otherwise. I have seen two generations of parents transformed in the most positive ways through the trauma and challenge of having and raising a baby with CHARGE, and I know of no other condition that results in parents acquiring such a stunning range of knowledge and skills and insights. Every parent at this conference is a champion and is already excelling in response to so many of the essential challenges, otherwise they wouldn’t be here.
David Brown August 6th 2013