My story-Augusta to Atlanta

My Story-Augusta to Atlanta-Scarlett Giles The back story-For you to feel the full impact I must start my story a little before I found out my daughter, Amelia, had hearing loss. I grew up all my life underneath the pines and in the fairways of Augusta, Georgia. I even went to college at Augusta State University. I was pre-med and had my sights on working in pediatrics. I was influenced by my dad, Dr. Jimmy Lemke, who is still practicing internal medicine in Augusta. I tell you all this because I had no intentions of leaving Augusta, and I planned to live my life there, but fate had other plans. You see I made some bad choices and ended up moving to Florida. I quit school for a while and when I began to see clearly again I decided to become a science teacher. I knew that my calling was with kids. I originally thought I would help sick kids, but I went back to ASU and decided rather than heal their bodies I would fill their brains with knowledge. I moved to Atlanta and began my teaching career. I taught Biology and Genetics where I showed my students how to do punnett squares on the board dealing with the recessive gene for deafness. Being in education I began learning about special education from IEPs to 504 plans. During this process, I learned that my lesson plans had to be altered sometimes to meet each students' special needs. Little did I know that my Genetic lessons would become reality and that my life plans would soon be altered. I met a fellow science teacher, got married, had two children and then I became pregnant with my third, Amelia. She was a surprise at first. We were going to have more children, but I had two toddlers already and we were going to space out the third. I tell you this little fact because it makes the story more powerful. I believe Amelia came into my life to help me cope with the fact that three months into my pregnancy I lost one of the most important and influential people in my life, my grandmother. I was holding her hand when she died. Sometimes when I look into Amelia's eyes it seems as if my grandmother is staring back at me. Amelia was born Oct. 2nd, 2009 and her best friend was born two weeks later on my grandmother's birthday...another little sign from heaven above. -The first year-On New year's eve 2009, three month old Amelia laid in my arms for her ABR (brain test) which confirmed that she had hearing loss. She has bilateral sensorineural hearing loss (mod-sev.). As the tears flowed, we tried to formulate questions to ask but had no knowledge of the subject so it was hard. I remember the audiologists saying, "you are leaving with the same great child that you came in with." While that was true our perspective just got changed...the rest of our life just got changed. As doctor appointments started filling our calendars we did not have time to grieve. We found out that our insurance company considered hearing aids cosmetic and that they would not cover any of the costs. I started writing a blog to update family and friends and also for its' therapeutic qualities. I recall one post around Christmas time in which I mentioned that one day we hoped to start a charity so that no kid would sit through a "silent night." We knew that it was vital to get her into hearing aids so we entered a program called GA PINES and they fitted Amelia in loaner hearing aids. We have the video of the first time she heard our voice with the hearing aids on. She was 3 and 1/2 months old and her hands were in her mouth. When the audiologist went to turn on the first hearing aid she dropped her hands and jumped. She looked around and looked at us as if saying, "Who turned on the sound?" Soon after getting the loaner aids she entered into the Atlanta Speech School infant program. I often wonder what would have happened if I had stayed in Augusta and had a family? There is no speech school there. It makes me worry about kids outside the metro area. Where do they get support and help? I guess I was meant to move to Atlanta. In the meantime, we started figuring out financially how we were going to pay for Amelia's hearing aids. We could only use the loaners for a few months. I had already experienced frustrations with the loaner pair not working. I now understand how parents become desperate to help their kids. I specifically remember one day where one of Amelia's loaner hearing aids would not work. I called up the ENT doctor's office and proclaimed that I would show up in their office to make a scene if they did not help me. I sat there hanging over Amelia's crib crying and saying ,"I just want her to hear me!" We live in suburbs of Atlanta in Woodstock. When we started having children my goal and role was to quit teaching for a while and stay at home to teach our children. I had started a home school co-op with three other moms that became known as "Mommy School" to our friends and family. We had eleven kids experiencing their mommies as teachers. When Amelia came along the financial stress of hearing aids began to ripple through every part of our lives. We were having discussions about me going back to work and putting my other two kids in some type of preschool/childcare. The cost of hearing aids was going to change every person in my family's life. I was not sure if I was going to be able to keep teaching my children at home, which meant the world to me. I also had to accept that Amelia would not be joining her siblings in "mommy school" because she would need a lot of speech therapy. The financial burden of hearing aids was threatening the way I wanted to raise my children. The mommy school teachers stood behind my desire to keep teaching my children, and they allowed flexible times and helped me get my kids to and from their houses. As we looked at our finances, we also started looking at grants and other foundations that might help cover some of the costs for the hearing aids. This research became almost a full time job for my husband and I in the beginning. We had a blue binder that quickly filled with suggestions, leads, and dead ends. We are a middle income family and never have looked to the government for "hand outs." We made too much money to apply for medicaid, but we did not make enough to just write a check for $5,000 for hearing aids. We specifically looked at the 109 fund and United Healthcare Children's Fund for hearing aids. We not only looked at the cost of this first set of hearing aids which was approx. $5,000 but started thinking about the future of replacing hearing aids every few years. Our family and friends started rallying behind us and offering money. Little did we know that behind the scenes at Wheeler High School in Marietta, Georgia the staff and students were secretly raising money to help us out. My husband was an administrator there at the time and had been a teacher and part of the wildcat family for ten years. They called him into the principal's office one day and handed him a check that covered all of the hearing aid costs!! It brought my husband to tears. In that moment my husband and I as teachers became students again and learned a valuable lesson of the kindness of the human spirit. We later received help from the United Healthcare Children's fund as well. We felt so much relief and gratitude, but five days later we received more shocking news which many families of hard of hearing kids get. We were told that the after audiology testing our oldest child, Colin who was 5y old, also had hearing loss. We had genetic testing and our children carry the gene connexin 26 for hearing loss. There are many families that we have met that have more than one child who has hearing loss. Think about the financial stress of that!! Colin's hearing loss is a high frequency loss, so currently he just has speech class and sits close to the teacher but does not need hearing aids yet. I say yet because my kids are in the progressive hearing loss category. Their hearing could slide and worsen at any given moment. I might soon have two children in hearing aids. We need these hearing aids covered now!! On Monday, April 12th, 2010 after 6 months of crying, fighting, begging, and searching Amelia got her first very own pink hearing aids!!! The journey continues- As if the financial strain of hearing aids is not enough I must also educate you on the sacrifice it takes to raise a child that is hard of hearing. Early on I was told that the first years would be the hardest because once the hearing aids are on your child will need to have speech therapy. Which is another big expense!! Many families that go to school with my daughter at the Atlanta Speech School travel from all parts of the state of Georgia. My roundtrip is two hours every day driving an additional 500 miles per week. The amount of therapy it takes keeps many of us moms out of work ,because we have to take our kids to therapy or specialized schools. Many of the children at Amelia's school have more than just hearing issues, they have life threatening problems that also costs medical expenses to the family. One of the little toddlers in Amelia's class died from cancer. One day I received a poem called, "Welcome to Holland" (which I have at the end of my story). It describes how it is to raise a child with a "disability" using an analogy. What I took from that poem was it's all about perspective. There will be those that have it worse in life than you and there will be people who have it better...but you must keep perspective. A year into Amelia's diagnosis I hit a wall so to speak. I remember writing a post in my blog called, "I don't want to be in Holland." In it I said, "I don't want to be the chosen parent, I don't want to be the 'God must think you are special and will give you only what you can handle' parent. I just want to be in 'normal Italy' ." We all have had those days where you don't want to fight anymore...you want to give up the fight or cause, but then something happens and it becomes bigger than you. A cause bigger than you. Advocacy-Let Georgia Hear - This is the part where my personal story and a group of mothers transcended into a greater cause. We all met through the Atlanta Speech School in the Hamm center which is a program for hard of hearing and deaf children to get speech therapy. Our kids became classmates and the mother's forged lifelong friendships. This year is the Speech School's 75th Anniversary. Katherine Hamm was a woman of vision who moved to Atlanta and started the Speech School in order to help her deaf son. By doing so she has touched thousands of lives including my Amelia. Seventy-five years later a group of us mothers have heard the calling to be an advocate. I once said, " Hamm is where the heart is" and this is true. If only the Hamm walls could speak you would hear a parent's cry for help on how to communicate with their child or help financially to get hearing aids. If only you could feel the emotion that is soaked into those hallways as kids who are deaf say their first words, and have those breakthrough moments. If you came and walked the halls of the Hamm center your heart would be touched, your eyes would be opened, and your ears would be delighted to hear our children speak. People's lives are changing everyday with the news that their child or children have hearing loss. They want to communicate with their child, they want their baby to hear a lullaby, or the words, " I love you." Do not let this god given right be attached to a price tag. Hearing is a right not a privilege! Scarlett Giles http://ameliasgiles.blogspot.com Welcome To Holland Poem-author unknown I am often asked to describe the experience of raising a child with a disability---to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this............. When you're going to have a baby, it's like planning a fabulous vacation to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may even learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?" you say. "What do you mean, Holland? I signed up for Italy. I'm suppose to be in Italy. All my life, I've dreamed of going to Italy." But there's been a change in flight plans. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So, you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would have never met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy, and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things about Holland.