2014 conf03Having left the hotel early, now sitting at the airport waiting for my flight, I cannot help but ponder the onslaught of fresh memories, thoughts and experiences from the NFXF 2014 International Fragile X Conference.

My heart is bursting with pride and my head is aching with wonder at everything that happened and everyone that participated. So many high notes, ideas and forward movement that I’m buzzing with renewed enthusiasm.

When we come to this Conference, we all step out of our lives. Lives where Fragile X is a diagnosis, an abnormality that sets us apart from the norm, shoving us into a contra reality and a position of minority in our communities and even in our homes, in some cases.

2014 conf02Yet at this Conference, our Fragile X family, our kin, our kind, our community amass in such numbers that we become the norm. For five glorious days we are what’s expected; we are the center of the universe.

Here is a place and a time where the social norm is to speak too loudly, or too quietly or not at all. Where body language is everything – flapping hands, rocking bodies, ataxia tremors, irregular gates and all. Here no-one thinks twice as a child melts down, or an adult interrupts or says something inappropriately. No one judges a young lady who breaks into tears when overwhelmed speaking about an emotional topic. In this place and time 1+1 = 3 because no one gets math. We greet someone enthusiastically in the morning and shy away from the same person in the afternoon because the situation is different. We rule the dance floor, the pool, the elevators, the TV’s and any mechanical equipment that satisfies our sensory itch.

At this Conference smiles of
acceptance, heads bobbing with
understanding, patience, hugs,
humor, laughter, love and charm
are doled out abundantly and often.
At this Conference smiles of acceptance, heads bobbing with understanding, patience, hugs, humor, laughter, love and charm are doled out abundantly and often. Eye contact is not. And this…this is the norm for five glorious days.

Maybe this environment of temporary normalcy is why the miracle has finally happened. We have created fertile ground and planted a seed amongst our children with FX. We’ve taught, encouraged, preached and cultivated independence, in our homes, in our schools, in our clinics, day in and day out for years. Thirty years, as a matter of fact. (It’s the NFXF’s 30th birthday.)

2014 conf01Our self-advocates have clearly taken this to heart and embraced it. At this Conference we saw, unlike ever before, how they have found their voice and they have made it loud and clear. They spoke on panels, addressing tough questions from parents and each other. They shared their experiences of what life looks like from their view. They took class together and learned more about how to face those challenges.

They encouraged each other, helped each other and connected with one another. They asked to have their own voice in the Community Support Network (CSN) and formed their own group, the Sibling and Self-Advocate CSN.

These Conferences exist because of the self-advocates. We gather every two years, to seek knowledge and connect. Parents come to learn the latest news, recommended approaches and suggested solutions to a specific problem. Professionals come to dispense their knowledge and learn more of the new questions and comments from the parents. Scientist and researchers come to share the advancements of their tireless efforts to understand and influence this syndrome that binds us to one another. But the reason we come together is still the same – for the self-advocates.

Let us not lose sight of the forest for the trees. May we shower this fledgling self-advocacy plant with water and sunshine, neither drowning nor scorching it. Let us continue to give them a larger and larger platform from which to speak. And most of all, let us continue to learn from them.

2014 conf - ebkThe patience, courage, and tenacity they exhibit in dealing with every obstacle the neuro-typical world throws at them is why they are our superheroes. If we can follow their lead of patience, courage, and tenacity, we will find what it takes to solve the biggest challenges facing our community right now. We have to pull together to help our scientific leaders solve the burning issues around outcome measures. We need patience knowing that it takes time, a long painful time, to identify fact patterns and make molecular discoveries, biomarkers and behavior patterns. And we need courage to admit that the time needed is not just the clinicians, the researchers, therapists and scientists; it is our personal time, our families’ time, our time volunteering for trials, questionnaires, and basic information. And we need tenacity. Tenacity for when we are discouraged, lose hope and faith as we have to take critical scientific baby steps before leaping forward, or even worse, having to step backwards in order to move forward. If our children, our self-advocates, young and old can exhibit courage, patience and tenacity under adverse conditions, so can we.

So as I step back into my “regular” life, fighting daily for what’s best for my two young men with Fragile X, bumped and pushed by the nero-typical world, I will remember the lesson of courage, patience and tenacity I have heard and learned. I hope you will too.

I can hardly wait to hear what our self-advocated tell us next!


Carolyn Krull TomberlinCarolyn Krull Tomberlin
has lived in Petaluma, CA (Northbay) since 2012 with her husband, John, and two beautiful Norwegian sons, both with Fragile X – Theodor (18) and Lars (14). She works as an Intellectual Property Manager/Licensing Executive for Rockwell Collins in the Aerospace Industry. Her current passion is answering the question: How will FX adults reap the benefits of the medications that “turn the lights on” when that day comes?