Our Stories

My husband Jonathan and I were blessed with the opportunity to attend our first CHARGE
conference in Scottsdale, AZ this year. We had absolutely no expectations whatsoever, but after the first few minutes of the conference, we knew our lives would never be the same. Kathy Buckley definitely set the stage with her humor and insight and it carried through the entire weekend. We met so many nice families & beautiful children with CHARGE! We went to many sessions together and some alone. There was always a new friend or
family to be made at the conference. You were never alone. Everyone knew how everyone felt. It seems we all live the same busy & complicated life everyday, just in many different places and sometimes even lands. There was a sincere sense of compassion and love throughout the conference; something I never knew existed in my world parenting a child with CHARGE!

We have always been blessed with very supportive family and friends, yet we left Arizona with even a greater support group than we could have ever imagined. From the conference, I can say with confidence that to be a parent to my son Logan, a child with CHARGE syndrome, I have had to give up a lot, we have had to sacrifice a lot, I have cried and cried MANY tears, but I know, without a doubt, I would do it all over again!

We are still flying high from our first conference and are wholeheartedly looking forward to the next…

Deep Thoughts – The Paradox of CHARGE

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.

CHARGE PARADOXES
• 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

Keith, who is now almost 10, has been trached since he was six weeks old. Because he had difficulty voicing around the trach, when he was about a year old, I decided to begin signing with him. Because I believed at that time that he had hearing but couldn’t voice, I only was learning and using nouns, adjectives and verbs – children picture book language. His first signs were ‘more’, ‘please’ and ‘read book’. By the time he was two he was using about twenty signs, and when he was three he had a vocabulary of over 300 signs, often stringing several words together to shape a concept. Since he was learning the signs so nicely, we were becoming quite detailed in our list of fragments to describe things.

When Keith was three his hearing was routinely tested for placement in special education preschool we found that he is profoundly hard of hearing, with a 90-120 dB loss. At that time, the infant assessment team had targeted Keith for the orthopedically handicapped classroom, as he had a trach, a gastrostomy, was not independently walking and had balance issues. I had contacted the deaf and hard of hearing (DHH) teacher because I was eager to place Keith in her class even before I knew he was deaf, because signing was his mode of expression. When the DHH teacher called me back, I had already absorbed the fact that Keith was deaf; she however had not heard the news yet. Our conversation was awkward, but revealing. She began by politely outlining for me all the reasons non-deaf children use sign. She praised the IEP presentation I had prepared for Keith and was impressed by his vocabulary and my documentation of it. She began to explain how being deaf is different than being hearing and utilizing sign when I interrupted her and said “But Keith is deaf. He has a profound hearing loss!” It seems odd to say but she was very excited about this, mostly because she is a wonderful teacher and exceptional at reinforcing language. Now she was attached to Keith and to his agenda – that he needed a complete language.

There was something in the beginning of the conversation we had, before she realized Keith was deaf, and she was talking about language and vocabulary that the green light went on in my head. I had given Keith a vocabulary, but not a language. I hadn’t really thought about that difference yet. I frantically began to fill in all the blanks in my signing, trying to create whole sentences, sign all the words in a storybook, and even sign all I said to anyone. Since I was quite determined about this, it really limited my conversation for a while. I was frustrated by my limited progress, and how awkward at times it was to learn the signs from a book and use them with any conviction.

Keith started special day preschool in the orthopedically handicapped class with a full time sign language interpreter, who was a deaf education student from CSUN (California State University – Northridge). When I saw her comfortably and fluently sign a complete language, I knew this is what we needed, and I invited her to come work in our home, and just sign sign sign. She came three days a week. She signed storybooks. She sat in front of the television and signed videos. She signed when she talked to me and she patiently answered all the questions I had from literally “how do I sign this..” to questions about deafness and its culture. I put ads up at Moorpark College and CSUN, and found two more college signers to come into the home the other days. Our entire family social life was based on these wonderful students and at dinnertime our table was always full of hungry students signing signing signing. I wanted not only the direct language presented to Keith, but the richness of the passive receptive language that hearing children naturally benefit from by simply being in the room when adults are speaking. I wanted to bring Keith’s language to that place of fluency that deaf children of deaf parents demonstrate.

It really took about 4 years for Keith to start signing language back. At five he was indicating his preference for certain nicknames – like any three year old might do, and at six he would dictate simple repetitive stories. At seven he began to be able to read, spell and speak intelligibly, and that’s when the whole thing took off. He went from simply always doing his best, to doing his best and doing fantastically. When Keith had just turned nine, he attended Space Camp in Alabama, and won the “Right Stuff” Award, ran for Vice President of Student Council for the entire Elementary School where his DHH class is located and won, and has been on the honor roll every quarter since letter grades have been given. As much as language has been the key to his emotional independence and “coming into his own” he also seems to love language, playing with it, using it and reading it.

With language, not only could we now know our child intimately, but he could freely unleash himself upon the world with joy. It’s not so much that Keith is “all caught up,” because he isn’t, but now his progress is no longer bittersweet and we no longer compare him to the “normal” life he would never have. He has complete ownership of his own person, just like anyone else. He has his own strengths and weaknesses just like anyone else. He has become completely equal and stands on his own without qualification or explanation.

Charlie is 3 1/2 years old. He was diagnosed with CHARGE syndrome around 6 months old. Charlie has been working with physiotherapy since he was 1. Since then he has made huge strides when it comes to his independence. When we first started PT, he would tolerate 15 minutes of therapy at most. Today Charlie tolerates 1 full hour of therapy. We mostly work on walking and standing balance. New in the last couple months has been introducing the use of his walker (after several failed attempts in the past— when children with CHARGE are ready, they are ready; when they aren’t, they aren’t!). He finally has the independence he has been working so hard to achieve. Recently, we brought Charlie to our local zoo and brought his walker along with us. He loves the water and it turns out he loved the splash pad at the zoo more so then the animals! He navigated his way to the different areas that were spraying water. He loves the sensory aspect of the water shooting out. It’s been so amazing to see his determination and strong will develop.