Dog Blog-Things to love: Puppies and Reading

 Happy New Year,
        My name is Scarlett Giles. I am a Parent Guide with Georgia Hands & Voices. Our Guide By Your Side Program has been up and running for a year now. Below is a new post I wrote to our blog. We have a Facebook group, website (www.gahandsandvoices.org/Guide_By_Your_Side.html), and pinterest account as well. Check out our program in the new year. Let us know if you or someone you know needs our guidance and resources for their Deaf/HOH child.

 It's a post all about Dogs...and reading too!

My Family

Giles Kids

            We welcomed into the family not one, but two puppies this past September. Brindle-coated brothers, Hairy and Blue. Trouble and love all wrapped into one. We got two from the rescue litter so that when our older dog, Jasper, passes they will still have a playmate. The puppies annoy Jasper sometimes, but she has gained weight and perked up since they arrived. Puppies are harder than babies ...yeah I said it.  The first week, I didn't want them to go, but I didn't want them to stay.  I powered through with 6 kids (3 human, 3 dogs), because of one gift I knew I would get at the end of the struggle: Unconditional Love. Dogs are the only ones that give this type of love. Humans are too flawed and complicated to extend this pure love. Introducing our handsome boys:

Meet Hairy -Hairy was named after University of Georgia's Mascot- Hairy Dawg. His middle name is J.J. after our first born dog-Jasper. We first called him "trouble", but he has turned out to be the most loving and loyal guard dog. He follows me everywhere.

     Meet Blue- Blue was named after our oldest child Colin's nickname "Boy Blue." Blue's middle name is  JaJa after Jasper.  Blue looks "blue" with his shy and sulky eyes, but tends to be the instigator underneath. He's like the teacher's pet. Everyone thinks he is so perfect, but he has an evil side. He loves to get Hairy in trouble.

           This post is not just me proudly showing my new puppies. I wanted to tie the dogs with an important topic, reading. In the new year, make sure you make time to read to your kids, especially your HOH/Deaf children.  Literacy is so important. Language is so important. I wanted to share some info from Georgia Pathway to Language and Literacy Program, which was established in 2010. This program is made up of professionals and parents, in the state of Georgia, whose mission is to increase literacy in Georgia's D/HOH children. Their goal is to achieve grade-level reading proficiency by the end of third grade for all students with hearing loss. Check out their website for great resources and tools to help your child.  http://www.georgialiteracy.org/

            Dogs and reading, how do they go together? My mother-in-law bought a children's book on hearing loss when we first found out about my youngest Amelia. The book is,  Elana's ears or How I became the best big sister in the world by Gloria Roth Lowell. It's about a dog (Lacey) that reminds me of our first dog-child Jasper. I imagine Lacey having a dog birthday party or wearing baby gap clothes as did our Jasper. The book starts off introducing the spoiled dog who even has a raincoat in her wardrobe. Lacey's biggest hobby was barking. She started to notice her human mom's belly was getting large. The dog recalls one night in which her owners, for the first time ever, rushed out and didn't even say goodbye. When they came home Lacey in her words says, "Yes, they had gone and had a baby on me!" The next few pages talks about how Lacey's privileged life changes, because of that baby. She was jealous, but then she tries to form a friendship with baby Elana. She shows off her favorite hobby, barking, but Elana never responds. Lacey tries to get her owners to see over the next weeks that Elana is not responding to sound. Then pages 14 and 15 of the book come. The pages that choke me up everytime....even six years later. It transports me back to the room where three month old Amelia laid with electrodes hooked up all over her head and ears for the ABR(fancy for a test that determines if your brain is hearing sound.) The words that the audiologist spoke that day were words I knew were coming. "Amelia does have hearing loss."

And the book reads-Part of page 14,"Finally(moms and dads can be kind of slow sometimes) I heard them talking about Elana's ears, and the very next day they took her to the doctor. That was the second time in my life they didn't say goodbye." Page 15, "When they came home, both of my parents were upset. You know how you can always tell whey your parents are upset. I heard them call Grandma Renee and Grandpa Al to tell them the news I already knew in my heart. Elana's ears weren't working. Elana couldn't hear."

The dog starts thinking of how she would help Elana. "I would be Elana's ears..I would be Lacey, the first ever hearing-ear dog." Elana goes on to get hearing aids and Lacey explains her excitement when Elana hears barking for the first time. It is a wonderful book and I hope you will go read it.  I wanted to tell parents that there are children's books written on the topic of hearing loss. It could be used to help your family member understand. It could be used for you to journey through your emotional process, or  introduce your child and/or siblings to stories of others like them. In the new year, read, read, read.

          While on the subject of books and dogs, I wanted to tell you about one more book, Kayla the Amazing. The Adventures of a Super Dog by Kara Gagnon. The author, my friend Kara, wrote this children's book.  It is about her beloved dog Kayla who recently passed, but was a superdog in real life. The book is not about hearing loss, but it's another good book to read to your kids. Kara's family has been by our side through our hearing loss journey, so I wanted to share her book info.  Here is the link to check it out: http://bookstore.authorhouse.com/Products/SKU-000942841/Kayla-the-Amazing.aspx

Remember everybody loves puppies, but get your child to love reading this year too. -Scarlett Giles

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

 

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