It's story time!

I homeschool both of my children.  This is the first year Kellan has been home with us and I love every single minute of it.  He has a love for reading books.  He will line his work up for the day and lay out the books on the floor by his desk that I will be required to read to him once his school work is complete.  Please do not tell him reading is actual school work.  Often he will grab a toy that goes along with the story and he will play while I read.  If you have not yet looked at   >> T H I S <<  there is great information to help as you read to your babies-- I mean big kids.  I am now being informed he is not a baby.  Womp! Womp!  My very favorite is how he will stop me and act out the story line.  So stinkin' cute!  Speaking of cute...check out the signed stories from ASL Nook.  This little lady is PRECIOUS!

I wish you each a very Merry Christmas and a Happy New Year!
Sara

How the Grinch Stole Christmas in ASL
Your very own Deaf Cindy Lou retelling the story of how the Grinch stole Christmas in sign language. AND it will make your heart grow 3 sizes!!
Posted by ASL Nook on Monday, December 7, 2015

Rudolph the Red-Nosed Reindeer in ASL
With the holidays, there's no stopping us from doing ONE MORE story. This time around Shaylee does Rudolph the Red-Nosed Reindeer!
Posted by ASL Nook on Thursday, December 10, 2015

The Night Before Christmas in ASL
Let's ring in the holidays starting with "The Night Before Christmas" video:
Posted by ASL Nook on Tuesday, December 1, 2015

H & V Leadership Conference-Uniquely Created, Strongly United






          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

 

Another group of friends

Isn’t it strange how parents will share intimate details about their children with complete strangers at a playground simply because you are standing next to each other pushing a swing.  Even stranger yet, the advice that we take from them, whom we know nothing about nor they about us  When my son, Wyatt was 2 ½, and still not talking, I can remember a parent telling me that I should just try talking to him.  She had no idea that I was all talked out.  I talked and talked, and sang, and rhymed, and danced.  He ignored me.  I tried to entice him with the Itsy Bitsy Spider, to no avail.  He had no interest.  I looked up every verse, and memorized, “Frog Went a Courtin” just to make sure I had something to sing to him in the bathtub.  I still know the entire song by heart.  I just didn’t know that he was deaf.

When he wouldn’t babble, the pediatrician told me not to worry yet.  My mother-in-law claimed that he babbled all day at her house.  When he didn’t respond to my voice, the occupational therapist said that he heard me, but, he had a sensory disorder and didn’t know how to respond.  When I screeched out a few notes on the violin, or vacuumed the house, we bragged about what a great sleeper he was.  A wise friend at work told me that I should keep on explaining everything to him.  He really was listening to me.  Then there were at least a dozen stories about a child, usually a boy, who never said a word, and started speaking in full sentences when he turned 3.  Oh yeah, there was even a center for speech and hearing where I was told that hearing probably wasn’t an issue. The first audiologist I took him to told me he probably had some minor hearing loss, but not anything significant.

He can’t hear anything.  He is completely deaf.  It is genetic and I have reason to believe that he was probably born like that. 

Wouldn’t it have been nice to hear from a parent of a child that is deaf?

Yes, it would have.  He is now 8, making progress, and trying to catch up from 3 years of missed language and many of life’s lessons that come with it. When I try to explain to parent’s of typical hearing children some of the problems I encounter as a parent, I still tend to get a lot of bad advice, from well-meaning people, who really just have no experience, knowledge, or understanding of what I go through on a day to day basis trying to teach my child the things that they take for granted in teaching their children.

I have always had a circle of women friends.  Sorry dads, I know you are out there too, but probably just not reading this article.  As an adult I have found that I have my work friends, my neighborhood friends, my social friends, and my family friends.  I have also taken on another group of friends who are very near and dear to my heart.  My Hands & Voices friends are a blessing and sometimes the only people who understand me as a parent.  There are also those immediate connections with strangers of DHH children.  At the water park, the zoo, the rest stop on the highway, when you see a child signing or maybe wearing cochlear implants.  There is an immediate connection and understanding of one another.  I feel as if I have been chosen to part of a very elite group of parents.  I am so glad to have finally found my way here.   Thank you Hands & Voices.  I love this community, the people I work with, and each and every parent that shares their story with me asks me to share mine.  I like the common themes and threads, as well as the unique challenges that we face. 

Beth

Music to My Ears

Well, the 2014-15 school year is now in the pocket. We weathered our daughter’s high school graduation and all of the end of the year festivities for both her and our son, Riley (a rising upperclassman).  During these celebrations, we attended the end of the year orchestra concert. These concerts always kick off with the school’s Fiddlers’ group playing some folksy bluegrass and Celtic selections. As the show opened, I was watching one of Riley’s best friends walk in playing a solo to the left.  My husband kept nudging me, “pay attention”, and as I pan to the right…in walks Riley playing a lovely solo, leading in the rest of the group (video at the end). This is Riley’s 5^th year playing violin, first chair, no less. Oh, did I mention, Riley was born profoundly deaf in both ears.

So, flash back 15 ½ years, when we received confirmation of Riley’s hearing loss. For me, the memories of holding him close, singing and telling him about the world, that he didn’t hear, haunted me. My (unfounded) fears of the future…would my Dad learn to communicate with his grandson or learn sign language; or will someone love him enough to spend the rest of their life with him, kept me awake at night.  For Matt, my husband, it was months later when we were driving down the road and he looked over at me with tears, the realization had hit him that the mixtape (yes, we are that old) he spent tireless hours creating for Riley's musical intro to the world…was never heard.

Music is an important part of who we are as a family. We are fans, we are musicians, and it narrates the story of our life.  How were we going to share this with Riley? How were we going to explain to Molly why Riley isn’t “listening” to her sing and read to him? How were we going to encourage our large social network of friends and family to communicate with Riley, to include him?  The child we were expecting came into the world in a whole new unexpected way.

We got involved in early intervention, therapy, and toddler groups, learned about language, learned about technology.  My eyes were opened the day our early interventionist, now a dear friend, asked me if I was talking to Riley, singing to Riley, reading to Riley?  My answer, well, not really…he can’t hear me. Mind you, Riley wasn't our first child, I was raised by generations of educators, I knew to read, sing and talk to babies. It’s all about language, language, language, however, Riley came to me with a different set of instructions…so I thought.  We now saw things in a different light, let’s get language into him, let’s engage him in EVERYTHING.  On a positive note, I could sing at the top of my lungs without Riley crying (some do, honestly), he just saw my joy. As a family, we made the choice to pursue technology and commit to the hard work that comes with that choice, and no guarantees. We also chose to be hopeful… safety, improved auditory perception… enjoying music? Well, that would be the cherry on top.

We kept reading, we kept singing, we kept talking. I guess I should have been flattered when one of our speech therapists told me it was great that I was SO loud and talked SO much…not sure everyone in my life would agree. 

We weathered the ups and downs, the successes and the defeats, the what ifs and why nots.  So, you see, this concert was a long time coming. His 16^th birthday hits mid-July…he’s excited to get his driver’s license and asked for tickets to go see his favorite band, Imagine Dragons, with his friends (okay, he has also discovered his own taste in music, we tried).  The cherry on top… he now attends music festivals with us and entertains us at night, lip-syncing songs from the 80s, while we prepare dinner.

This is our story and having shared it, I also want to say that I have seen the same zest for music and dance at concerts and in music videos which are interpreted in sign language.

Jazz Fest 2013...couldn't keep my eyes off of Holly Maniatty, on the right, look her up, she's famous.

Have you seen the DJs and dancers out there who are Deaf and Hard of Hearing, too…you should! So, what does this all mean, it means find what feeds passion in your family and share that with your child. It means help your child explore what his or her passions may be and just leave out, “well, he can’t because he can’t hear”…throw it out, ignore it and explore it.   

As I am writing this, Riley asked me what happened to the mixtape ...you know what, I don't know. Who has a tape player these days anyway, we will just make some new music together. 

Here is the referenced Fiddlers' performance, if interested. Listen for the, "Pay attention." at :31.

                                     

Mother May I

I have cleverly named this post, "Mother May I."  Maybe it's not so clever, but it's May, it's around Mother's Day, and remember that childhood game, "Mother May I?" One player plays the "mother" and the other players are the "children." To begin the game, the mother stands at one end of a room and turns around facing away, while all the children line up at the other end. The children take turns asking "Mother, may I ____?" and makes a movement suggestion.  The child first to reach the mother wins. Let me tell you a story about a recent conference I attended and then I will tie in this game.

The five of us Parent Guides & Terri, our Program Coordinator for Georgia Hands & Voices Guide By Your Side Program, attended the EHDI conference this past March.  EHDI stands for Early Hearing Detection and Intervention. It's a mixed crowd of ENT doctors, audiologists, students working on becoming audiologists, early intervention specialists, support groups like Hands & Voices, and parents of children who are Deaf, deaf, or Hard of Hearing. No mistake, I just wrote "deaf" twice. I'm slowly getting educated on these complex terms: Deaf- you are living in the Deaf culture; deaf- you are deaf but you have technology on such as cochlear implants or you might use sign, but not consider yourself part of the big "D" deaf community; Hard of Hearing- you have mild to severe hearing loss; may or may not use technology and/or sign. Confused yet? It is not even really that clear cut! For the purposes of this blog, I am trying to make it simplified. Both of my children are Hard of Hearing.  It's hard to put into words the different emotions I felt at the conference. My work badge said, "GA Hands & Voices Guide By Your Side Parent Guide." Underneath my badge, however, was my heart as a parent of  Hard of Hearing children. The conference was very helpful as far as my job goes. The conference was very hurtful as far as my heart goes.

At the conference, I was fascinated and inspired by the stories that were different from mine. In one session, a group of college students from Gallaudet University in Washington D.C. sat on a discussion panel. Gallaudet is a private college university for Deaf and HOH students to attend.  All the students used American Sign Language.  Some had technology. They all talked about their path to finding their identity.  I believe the struggle to find identity occurs in every human being. I also was impressed with all of the professionals at the conference who are dedicating their life's work to helping children who have hearing loss. The majority of babies born in the United States are now screened at birth for hearing loss! Early detection of hearing loss is so crucial to helping these children with language/literacy.  This was the positive part of the conference.

The negative part: I got to see this communication mode debate. Communication is the foundation of our lives. It's the social component that makes us who we are. It's important . When you have a topic of importance you know it's going to be debated. My family chose Listening and Spoken Language for our daughter when we found out about her hearing loss. We aided her with hearing aids and put her in a speech program. Our son's journey was different since he was caught late and has high frequency loss. He needed lots of speech therapy, but was hearing without assistive technology/sign language. Some families choose Total Communication, which is where they use technology and sign language. Some families do not use technology at all and use sign language. Through this wonderful job, I am meeting families who chose a different communication mode path with their child than me. I have been blessed by learning about their journey. The way I see it, our guide job is not to pick your path, but tell you to make your path purposeful.  If you are in the beginning of your hearing loss journey here is something that might be hard to understand. Families have all those choices, which I listed above, but here is the dirty truth.  You, as a parent of a child with hearing loss, will be judged by which path you choose!  That's right. It's a complex answer to why we are judged. Some do not believe hearing loss is an impairment. It's the way they were born and they are proud of it and hence judge those who put technology on kids. Some people that put technology on their kids are dismissive, unappreciative, and insensitive to Deaf culture. In our opinion, we aided our daughter with the main intent of allowing her greater communication access to the world around her. However, her great grandparents were both big D Deaf.  Great Grandma and Grandpa were Deaf, only signed and had four hearing children.  We wondered in the beginning of our journey what the great grandparents would have thought about us using technology? So where do I fit into this communication mode madness? I don't nor do I want to. I have a child that was caught early with hearing loss. I have a child that was caught late. I have a children who use technology and speak. I had family that were in the Deaf culture. I want to do what is right for my family and not be judged for it. So you find out your child has hearing loss, then you find out the financial burden, and on top of that you get thrown into a communication war. Keep your head up. I feel like we are moving progressively forward.  Georgia Hands & Voices is trying to mend that bridge with our rainbow of differences so to speak. Our Guide By Your Side program is here to support you and your decisions.

The silver lining of hope: You are reading this blog, which means you know about GA Hands & Voices and if you keep reading the blog  you will learn about us parent guides.  We all come from different backgrounds. We all have chosen different paths, but we do not judge each other.  We will not judge you. We are here to support and encourage you . The fact that we all have children with hearing loss should bond us.  Even when I use the word "loss" it's debated.  I sat in one of the sessions at the conference and a mom was talking about the grief process of having a child with hearing loss.  Another mom stood up and said, "I am trying to understand your point of view, because I did not grieve when I found out my child had hearing loss." This mom and many in the Deaf culture say they do not feel a sense of grief, because their perspective is different.  They already know Deaf people or they are Deaf themselves. As these two women talked politely about their different emotional responses I sat an thought. I wrote down this sentence on my notes, "Grief comes from fear-Scarlett"   I grieved my child's hearing loss, because I was fearful to lose something familiar to me. I feared not being able to communicate with my child the only way I knew how..to speak. I feared the new path, because I had never been down it.  I was fearful, because I had no knowledge. I am a hearing parent in a hearing world. Which leads me to my second statement, " Fear can be silenced with knowledge"-Scarlett." The more I walked down this new path,  I gained the knowledge that quieted my fears.  Children who are Deaf/deaf/HOH are successful human beings!  I experience it every day in my home life.  In fact now, if I was given a choice I would boldly walk down the path of hearing loss again. It has provided me with so many blessings and so many life experiences. At the conference, there were moments that I felt like I was being judged and indirectly told 'You don't know the struggle.'  The fact is I did struggle.  At first, I had to struggle to get out of bed. I had to struggle to balance my other children's life with my special needs child. I had to struggle to find financial assistance with hearing aids. I struggled with being disappointed with our society and government in failing their oaths to protect our kids. The fact is you will struggle. Some of our struggles are different depending on communication choices, for example, expensive speech therapy or lack of interpreters or Deaf mentors. Some of our struggles, no matter what the communication mode is, are the same such as social stigmatisms and IEPs. And as mothers haven't we all cried over our child's crib at some point, because you don't know what tomorrow will bring? We all struggle to be heard.  I want all of us in the hearing loss community to choose each other and not the fight.  I want all of us to choose to stand up for each other in the fight for our children's rights. We all have made different choices in modes of communication, but we all are part of the struggle.  The struggle to have our children be represented, taken care of, and heard..in signs or in words.  The bond should be greater than the divide.  Let the struggle bond us...not bind us to a certain opinion or mode.

So to wrap everything back to the "Mother May I" concept. Each of us guides are mothers of deaf/HOH children. Being a mother is hard.  When my child was a baby, I thought how am I to know what path she might want to take in the future? I had to come to peace with unanswered questions. You just have to make decisions with a motherly heart. Our children call out to us in different ways with different needs. All children though call out, " Mother be strong. Mother love me."  The most important part is to provide chances and opportunities so when your child signs/speaks  "Mother, May I_____?" You can say, "Yes, you may!"  Happy Mother's Day
-Scarlett Giles

Meet you at the park!

 

Whatever.

I have been told since Kellan was a baby he would never fit in.  Once we received his diagnosis and communication choices needed to be made, the opinions of those representing intervention for the Deaf and Hard of Hearing are loud.  The hearing community makes it clear that amplification and technology would be his only hope in a hearing world.  The Deaf community makes it clear I have no business making that choice for my baby and he would never be included in Deaf culture despite the fact he is profoundly deaf.  If we chose total communication, using both listening/spoken language and ASL, he would never find himself accepted in either community.  It seems deaf kids do not have the same abilities to learn multiple languages as their hearing counterparts or so it is represented.  I remember finally shaking my head and responding in the only mature, responsible manner I could muster:  Whatever.

In the last year, we have been confronted with the reality of the social component to Kellan’s development.  When you are constantly being told your child is a distraction and an interruption there comes a point in time you start believing the lies.  Your baby will never fit in.  I’ve wrestled with these thoughts the last few months and have found myself coming back to:  Whatever.  I should also share it is one of my favorite ASL signs.  I usually sign it while shaking my head and rolling my eyes because it’s a legit part of the language and I choose to take full advantage of it.

Whatever is true: my baby is a good and perfect gift.

Whatever is noble: when he does communicate in whatever manner he chooses, I want him to speak truth in love and that has less to do with hearing ears and more to do with a hearing heart. 

Whatever is right: what works for my son and our family in terms of communicating is what makes the choice right.

Whatever is pure: he is a little boy that has yet to be affected by the opinions of others.

Whatever is lovely: he is insanely cute!

Whatever is commendable: he is the hardest working little dude I have ever met.

There are always choices.  I’m going to choose to think about all the things worthy of praise.  

He deserves that from his mama!  

Sara