The 12th Annual Hands & Voices Leadership Conference took place September 18-20th in New Braunfels, Texas. Four of the five Parent Guides (Sara Price, Deshonda Washington, Kelly Cashion, & Scarlett Giles) were able to attend. Terri Patterson, Georgia Hands & Voices Guide By Your Side Program Director, was with us as well. I have collected the thoughts and memorable moments my fellow guides experienced and will summarize our trip to Texas.
First, let me talk about the theme of the conference, "Uniquely Created, Strongly United." I believe this theme accurately describes our Georgia Guide By Your Side team. We all have unique stories and different paths, but our strengths help unite us. We have different strengths as Deshonda often reminds us. I believe the one quality that "strongly unites" us is that of empathy. We can all relate to a common struggle. Our children all have hearing loss. The struggle is different in the why and the how life put us on this path, but it unites us. Our Georgia Guides are "Uniquely Created, Strongly United."
Janet DesGeorges, Executive Director of Hands & Voices, opened the conference with a motivational talk on "The Accidental Leader." I personally can relate to the title. When we first found out about my child's hearing loss, it was not uncommon to hear from others "You are strong. This will help you help others. God only gives what you can handle." While those comments were not ill willed they made me feel ill. I didn't want to be the chosen one, the tested one, or a leader. I just wanted a "normal" life. This topic of leadership came up again four years later when I was approached about being a Parent Guide. I feared, by helping others through what I went through in those early diagnosis days, it would break me...again. My mind said no, my heart said yes. I knew that I must turn around from where I had been and help/lead others along the journey. One quote that stuck out in my mind from the presentation was, "You don't have to see the whole staircase, just take the first step." That really is what each Guide has done...taken the first step and climbed the "Accidental leader"staircase.
During the first breakout session, Deshonda Washington and I went to a wonderful presentation. A butterfly sticker was place at our seat when we arrived (see pic.) The speaker opened up with a powerful statement. 'Butterflies are Deaf. What the Caterpillar calls the end of the world, the Master calls the Butterfly." Deshonda and I were so taken by such as beautiful analogy. It is a great take home point to tell our Guide By Your Side families about. In the beginning with your child it might seem like the end of the world. In some ways it is the end. It's the end of the way your world was or the end of the way you had planned it to be. As metamorphosis happens in your life, you start seeing peeks of the beauty that awaits you. The life lessons, the joys that special needs children bring to you and bring out of you. It's hard to see the butterfly in the beginning. Our hope is that we can help our families to believe that the butterfly is waiting down the path. One day understanding may come, or even better peace may take flight and transcend that understanding.
The conference not only gives us personal inspiration, but also professionally helps us. The conference provides the opportunity to network with other state and international chapters including China, Kenya and Russia. Terri Patterson has attended eight Leadership conferences. She explained it best, "The diversity of culture, experience, stories, lives, and journeys of these parents still humble me, fill me up, comfort me, break my heart, encourage me, enrich me, surprise me, embrace me and teach me. We met and related to professionals and parents of children who are D/HH from all of these countries. They are as passionate as we are about the importance of parent to parent support, communicating across multiple spoken and signed languages, and we all still “get it”. I never leave without learning something new professionally, something new about myself and reigniting that fire in my belly that drives me to do what I do and reminds me that I am capable."
The conference theme Uniquely Created was seen most beautifully from our seats as we watched the English language be interpreted into American Sign Language, Russian Sign Language, Chinese and live time captioning on a screen via CART (Communication Access Real Time Translation). So, if you were sitting in my chair at the conference during a presentation you would have heard English and Chinese, seen American Sign Language, Russian Sign Language, and live time captioning. That’s exhausting, but uniquely awesome! While on the international topic, I must say a word about Jackie Oduor from Kenya. I wrote about her when she spoke at our conference last year. She had talked about changing the taboo of Deafness in Africa, even if she had to stand alone. This year she attended the conference, again. Her life had taken a tragic turn since last year. She tearfully spoke from her seat on the last day and said, "We don't know how much time we have." And with her brief, but powerful words she impacted each of us. She is only one person, but she is proof it only takes one person. My hope is that our brief interactions with each of our Guide families can be that powerful. We embrace each other, because we understand the unique journey.
The conference gave us some professional points, but it always seems to come back to the personal benefit. Another take-home point from the conference came from one of our Guides, Kelly Cashion. She talked about hearing what she needed to hear when she attended a session concerning advocacy and IDEA law. It was personally beneficial as she has spent years advocating for necessary equipment for her son in the public education system. Upon returning home, she again found herself in these conversations and was able to share the reality that her son's need are protected under law. Speaking of reality. Our reality, us Guides, is like your reality. IEP meetings, advocating for our children to have fair and equal access, defending/denying stereotypes of Deafness, redefining Hard of Hearing as a result of technological advances, and educating the world. Wow, REALITY! The conference also helped me, personally, when I attended my child's IEP this week. The system does not want to define my child as HOH/deaf. Her IEP is voice/speech, but she is HOH. We all know, or you will find out, that the system is complicated. We have some great people on our side in our schools, but they are the professionals. I am the parent. I am living the document they are writing. All the legal terms and goals cannot quantify or capture the journey that it has taken us to get here. The paper does not tell the story of sacrifice and struggle. Yesterday, I cried at the IEP, because on paper it said she was not a deaf/HOH student, but in reality she is. Four years given to early intervention and I just needed them to acknowledge where we had been and where we are going. I wanted them to acknowledge her identity. I think I got that from the Hands & Voices conference about the need and importance of identifying. She must embrace her differences. If you don't embrace yourself, you will never embrace others. It's so true..”.Know thyself” As Guides, the conference always reminds us of our personal journey.
The last topic of the conference is a hard one. Maybe you have never thought about this topic, never had to think about it, or you think, how would/will you ever survive it? “It” is Deaf Plus. A high percentage of children born have hearing loss plus other health problems or disorders. Three of our five Georgia Guides have Deaf Plus children. The parents of Deaf Plus kids will undergo tremendous stress. Their marriages experience higher divorce rates. Their social circles and support groups can become complicated, For example:” Do I fit into the Deaf community or the Autistic Community?” I do not have a Deaf Plus child, but there is an important message that I have and plan on delivering. You see, the "P" for Deaf Plus represents perspective, for me. Two moms spoke at the conference about their journey as Deaf plus moms. They gave me the gift of perspective, and I hope they give it to you, as well. I must have repeated a thousand times, in my head, how thankful I was during their presentation. At the beginning of my journey, I struggled with one diagnosis, hearing loss, and that is justified and that is ok. However, Deaf Plus moms struggle with many, and I want to make sure we remember them. A few of my friends with Deaf Plus children have told me they were concerned about death, not deaf, in the beginning. Talk about Perspective! They have to talk about things we never want to talk about, such as long-term care, medical devices, and planning funerals. They are burying their babies and struggling to glue back their broken souls. We all start our paths in different places and different situations. I have not "walked in their shoes", but I marvel at their strength and perseverance. I think that is why people say that blessings come from the bad. Let us not forget the Deaf Plus families, because their struggle blesses us with perspective.
In closing, the end of the conference is by far the most special. We all participate in what is called the Naming Circle. Everyone who attends the conference holds hands and we circle the room. A microphone is passed and you speak the names of your Deaf/deaf/HH child(ren). The purpose is to lift up those children who need us to be their voice. Sara, one of our Georgia guides, eloquently describes the circle. "It’s the butterfly moment. You speak the name of the struggle that unites each of you and you squeeze a hand and shed a tear and you see the beauty that is always created out of hard spaces." As we each shared our experiences from the conference, Sara also reminded us of the value of the small, faithful moments. She wrote, " Hands & Voices is strong because of the strength of each individual small unit, the chapter. The chapters are strong because of each individual willing to donate time, experience and a listening ear. When we walk away, we want each family to know your small moments in the confines of your home matter. The books read and appointments scheduled. The time spent in your car and sleepless nights rocking your babies. Those are the beautiful, butterfly moments. Thank you for sharing them with us!" We went to the conference to stand as a whole, but we walk away ready to change the world even if we are only one, uniquely, strong person.
Scarlett Giles -Georgia Guide By Your Side Program/ Hands & Voices