Aloha I keia la. O Haaheo kou inoa. Good morning, my name is Haaheo. I am the parent of Naihehau Hawanawanaimakua Kalama and Hoala Moi Greevy. 21 years ago, Naihehau was born with Down syndrome. That event not only changed our lives, it deepened our sense of gratitude. And, like all of you here today, we also became skilled and vigilant voyagers.
When I review our history as members of the early intervention movement here in Hawaii as well as across the nation, I am struck by the fact that it has been our belief in and the practice of ALOHA that has sustained us throughout these years of hard won battles and bitter disappointments. It has been our belief in the universal abundance of gifts laying dormant in our children, our belief in the universal abundance of gifts laying dormant in the professionals who have passed through our lives, our belief in the possibilities for creative and inclusive communities and above all our belief in the abundance of gifts within ourselves that has sustained us.
To feel and practice ALOHA, you need to have a world view of universal abundance, you need to see the glass as half full, not half empty. As a concept, ALOHA is the embodiment of a belief system that respects the common good as opposed to the few.
That belief in ALOHA, whether we know it consciously or not, has been our guide through the many reefs and rolling heavy surf we successfully steer our canoes through daily. And without us knowing, some of us have become master navigators, like a Nainoa of the voyaging canoe world, who helped to build and sail a seafaring canoe from Hawaii back to our ancestral lands of Tahiti. And many of us have even become teachers of navigation, like a Mao Piailug, creating generations of Nainoa navigators who will succeed us, who will make new landfalls in yet uncharted waters. In their canoes will be our children's children and beside them, paddling just as hard, with just as much commitment, will be all children.
The early intervention community here in Hawaii has created a legacy based on this notion of ALOHA, a belief in the universal abundance awaiting all children and their families.
Embedded in the concept of ALOHA is our dream of inclusion. Realizing that dream, however, has left its scars on all of us. The battles have drawn out the best, most creative as well as scariest parts of our personalities. I call it our Pele persona.
In Hawaiian epistemology, Pele is the goddess of the volcano. She is the embodiment of female power, passion and rage. When she is angered, disappointed or impassioned, her eruptive outburst covers the land with red ribbons of molten lava that flow slowly, but with great certainty. It is at once destructive and creative.
Like the goddess Pele, our Pele persona has changed the landscape of early intervention. We have created new and uncharted territory. We have composed many chants that tell of our great voyages into what was once believed to be the edge of the world, the impossible. Our chants tell of our bravery, they tell of the commitment of our family and friends, they speak of the courage and fortitude of our children. In fact, the most eloquent chants are often composed by our children.
My sons, Naihehau and Hoala, are the living chant that calls me to present time, to the here and now. That while I may indeed live the remainder of my life limited by my life experiences and memories, my sons will always be calling for me to join them, to join them here in the 21st century, here in this place where their roles as young adults are being explored and tested and my role as their parent is transitioning into menopause, Living Wills, Trusts and Guardianships.
Our chants weave together the stories that make our lives one. Our chants are the living and ever evolving symbols of our partnership as members of a family unit. Our chants tell of learning, one from the other, one with the other. They tell of shared leadership, they tell of patient tutoring and a hunger for learning, they tell of comfort and forgiveness, they tell of acknowledgement and acceptance, they tell of the in-coming and out-going tides of understanding and changing realities. We together with our extended family and friends chant, in harmony, the diverse, and sometimes complicated passage of our time together on this earth.
Ancient Hawaiians developed a chant formula that helped the chanter to remember the often long and important sequence of events and names. That format involved the simple and yet eloquent use of repetition. For example, this song, "Green Rose Hula," adapted from an oli, or chat, illustrates the technique well. (Although Hawaiian is a foreign language for many of you, I want you to listen for the repetitive pattern; I will signal when it occurs.)
No ka pua loke lau ke aloha
No ka ui kau I ka wekiu
Ko ala ona ona ia nei
Hoolale mai ana e walea
E walea pu aku me oe
I ka hana noeau hooipo
A he ipo oe nau I aloha
Ka anoi a kuu puuwai
Haina ia mai kapunana
Nou na Green Rose ke aloha.
Many of you have traveled a great distance to be here today. Make the trip worthwhile. Listen to the chant of this conference. Listen to the refrain, listen carefully so that you can hear the personal truth that is yours and yours alone, pay attention to the words and learn to chant the chant. Pay attention to the cadence and learn where to pause and take a deep breath for the long recitation of your life events that will be the currents upon which your family canoe will travel. Listen so that you are better prepared to make your canoe seaworthy, because as many of you know, it can be a long and arduous journey.
I want to tell you about laulau. The laulau is a Hawaiian staple and delicacy that is made with taro leaves, fish, pork and beef. The making of the laulau is a labor intensive effort that requires the help of many hands.
When you make laulau, it is a general rule of thumb that you begin by first carefully reviewing, privately and then with your immediate family, whether to proceed with the project. Once that process is completed, the next step is to gather your human resources together, your family and friends, for a meeting. In this meeting, the goals of the discussion are to determine how many of them are available to help, to determine the skill and knowledge level of each, if any of them have knowledge of where to buy, get or gather the necessary ingredients, and if any of them know where the laulau can be put together and steamed.
Once all those questions have been answered and the people have volunteered for specific assignments, the next phase is initiated and that is the careful gathering and preparation of the ingredients. Each luau leaf is carefully selected, washed and de-veined. Each piece of butterfish is carefully cubed, each piece of pork and beef is carefully selected making sure enough fat remains to give the laulau that juicy ono kick that only fat can give. An enormous amount of times is required for this phase. It is perhaps the most labor intensive phase.
The third phase of laulau preparation is the coming together of all the ingredients and their preparers. In my family the assembly line approach has been the preferred method of laulau production, spiced with great laughter and "talk story." The putting together of the laulau becomes a symbolic gesture that acknowledges our ties to one another and our unspoken and understood alliance, each to the other and that each of us has brought to the process their unique skills and wisdom. Underlying this phase is our trust that each of us has completed our tasks accordingly and that no one has been asked to take on more than he/she is capable of.
I told you the story about laulau because I think it mirrors the essential basics of our work in early intervention.
Our work in early intervention requires that we carefully search within ourselves and identify what makes our particular family unique in terms of the how and why we look at the world the way we do and how that perspective impacts the way we operate in that world. But we know we cannot stop there. We cannot rely only on our own insights. We ask friends and family to join in the process. And if we have been fortunate, included in that group will be a number of professionals with whom we have been able to form a working relationship, a working friendship, if you will. Included in this initial phase will be our sense of who we are in terms of ethnicity, religion, income, etc. as well as who we are in relation to our role in our larger family organization.
This process, while pretty straightforward, can be very time-consuming, frustrating and sometimes discouraging. Self-assessment and reality checks can be powerful and draining processes, even when the outcome is positive. They are, however, essential. The insights and information the process can provide you and your family will enable you to communicate to and with your professional partners.
How well you are able to communicate and share who you and your family are and what you hope to achieve and how you hope to achieve it, will depend on how thoroughly you have been able to process the initial phase.
Oftentimes we expect professionals and others to know certain things about us because of the work they do or because of who we think they are. In actuality, they know best only what we tell them and show them about us. So, do your initial groundwork well and thoroughly. If you want a particular outcome, if you want it done in a particular way by a particular person, you must be willing to share those wants in clear and concise language and behavior. And you must be willing to do so over and over again; remember the eloquence of repetition.
Our choices, then, and our opportunities to exercise those choices become immeasurable because of our sense of self, our sense of purpose and our sense of direction are all clear and consistent with our personal truths. When the initial phase is done completely and thoroughly, the foundation has been laid for great expectations to be realized. In the words of a colleague from Boston, "...having a vision is not just planning for a future we already know how to get to. It is daring to dream about what is possible."
This is where the process can become exciting as well as anxiety producing. Depending on your past experiences as well as those of the professionals, you may be steering your canoe into uncharted waters with unfamiliar guiding stars, winds and currents. You may need to invent a compass for this voyage that is custom made for the unknown. You may need to search for someone who has steered this course or one similar to yours. You will need to trust in yourself and in those with whom you travel. You will sometimes feel alone, but know that you are not alone.
There will be in spirit a flotilla of canoes with you and your family through every reef and every set of rolling surf. The canoes will be filled with children and their parents, their siblings, their teachers, their doctors and nurses, their friends and relatives.
It will be a collective journey guaranteed to reach the New World, not by accident or intuition or pity, but because we have done our homework. This "parent thing" is a science. We are all great scientists whose work will improve the quality of life for all families.
In closing, the last point I would like to make is to encourage each of you to "pass on the passion." I was in a meeting of professionals recently in which we were discussing gaps in service. It became clear that this particular gap had very little to do with a lack of resources. Rather, it had to do with the dreaded "A" word, ATTITUDE. My colleague sitting next to me leaned over and whispered, "Where's the passion?" The group had become jaded to this heinous crime. We had become tired and worn out. Our battle scars had blinded our vision so much so that once we realized it was the dreaded "A" word, we collectively sighed in disappointment. That's as much as we could muster; no one pounded the table; no one asked for the head of the offender to be delivered on a platter by 12 noon. We simply sighed.
I think it's time for another eruption, don't you? All kidding aside, we need to find meaningful ways to keep the passion alive as well as to pass it on to those who follow. I have been fortunate in that I have had many Pele personas mentor me, coach me and support me. Just recently, the time had come to review and update Naihehau's Individual Service Plan. I had been forewarned that there were problems with meeting our needs. I did not go to that meeting alone. I called in two of my Pele personas and they came without hesitation. Did we get what we asked for? You bet!
You are probably asking why I would need support after all these years in the trenches. I needed support because I knew I was too close to my own rage and disappointment to be an effective advocate. I knew that my Pele persona was stuck in destructive mode. I needed help. No mater how sophisticated we may become, I, for one, know I will always need and want encouragement and support.
This is how we do it in Hawaii and I am sure it's how you do it in your hometown. A word of caution, however; look around you when you go home. Have you noticed that we are all aging out? Have you done enough to ensure that the passion for this work will remain alive, will remain vital and vibrant? Have you done enough to ensure the knowledge of parent navigation is passed on? Have you done enough to mentor those who follow in the wake of your canoe? (Did I just hear a collective sigh?} That is the challenge I leave you with.
Thank you for listening to my story. I hope to have opportunity to hear some of your stories.