Archive for August 25, 2014
Lately, I have been reflecting on my life as a hard of hearing adult. It’s a new world for me because I have been in a period of transition from graduating college and living on my own in a completely different state than my family. I am learning to navigate the daily life as an adult, without the everyday guidance of an IEP or teachers, sign language interpreters, or an FM, or even my parents. Of course, there’s the occasional phone call to my parents letting them know that I am surviving in the big city (Seattle) just fine. And it’s the truth, I am doing great here. I have my first “big girl” job working at a doctor’s office as a Patient Service Representative, and I love it there. I have good friends who love me and know me well, and I have this beautiful city that is filled with coffee, art and above all, acceptance of who you are no matter what.
Being an adult, and no longer in school, I have to be more aware of making sure to let my boss, my co-workers know that I am hard of hearing and I wear a hearing aid that helps me hear. It’s the standard, tried and true speech that I have been giving my whole life. The only difference is, it is now my responsibility to make sure that those around me are aware. I don’t have school, and teachers, and my parents to remind me that I need to make sure that I am getting the communication access I need. Thankfully, I have a rich history of watching and learning from my parents and role models of what advocacy really means and how exactly to go about it. I feel very confident in knowing when it’s important to speak and to realize that this is a moment where I need some assistance. It’s hard, but it’s something I need to do.
The reason why I say that sometimes its hard to recognize those moments, is because I have made the decision in my life to not let my hearing loss be my identity. It is a part of who I am, but it is not the definition of Sara DesGeorges. I realize that my hearing loss goes deep into the core of who I am, without it, I wouldn’t be the same person. But, I do have it and it has shaped me. I am thankful for my hearing loss because it allows me to experience moments that many don’t have.
One moment that I’ll share with you and love to think about was when I was living in Colorado and I was driving the country roads by myself. It was a beautiful gorgeous day and the sky was blue, the sun was shining. My car was kind of a junky car so it was very loud, and then add music, it gets pretty noisy. Then, I had this idea. I took out my hearing aid, rolled down the windows and put the volume as loud as I could on the stereo and I’ll never forget that moment.
All I could hear was the music playing, what I could feel was the wind blowing and ahead of me was the empty country dirt road. That moment is special to me, for reasons I can’t put into words, but it was my moment, they are the ones I cherish when it comes to my hearing loss.
The reason why I share all of this with you, is because I know that this blog in particular is about raising a child who is deaf or hard of hearing. I assume, that since you are still raising your child they are still living with you in your house and attending school, so you are in the thick of it all. The chaos that is learning how to advocate for child and making the tough decisions about communication and what is the best way to go about it, It’s hard, I know. But you’ll get through that chaos, and I hope that what I’ve shared with you will give you a slight glimpse into the future of what it’s like to come out the other side of when your child goes out into the world.There are so many things you can do to help your child but i believe what the most important thing is to try and help them discover who they are and love and support them through it all.
I heard the audiologist say the words “the ABR confirmed that your son has bilateral moderate to severe hearing loss”, but after that sentence, the words coming out of her mouth sounded like the adult cartoon characters on a Charlie Brown episode. I didn’t hear a word she was saying. I silently thought to myself, PLEASE let the hearing loss be the reason why Kai isn’t babbling and talking. My son was 2.5 years old and was completely non-verbal. Since coming home from China at 14 months, Kai had been diagnosed with epilepsy, apnea, ataxia along with severe hypotonia. At 2.5 years old Kai was locked inside his body. My optimistic side wanted to believe that we would “slap some hearing aids” on him and he would begin communicating with us within weeks. However, my realistic side knew that nothing with Kai was easy. He had made great strides with his physical development, but it was a slow progression. It wasn’t for lack of hard work or effort on his part. He was an amazing child with the determination of a lion.
It was apparent within months of receiving his hearing aids that Kai was not meeting any of his speech goals. Kai would be diagnosed a year later with a condition called Apraxia. Apraxia is where the brain has difficulty coordinating the muscle movements necessary for speech, therefore speech is very difficult. My mission in life was to find a way for Kai to communicate with others. I spent my nights watching Signing Time videos and completing the www.lifeprint.com lessons. I also took as many ASL classes that I could find in the community. Even though I had doubts about Kai’s ability to sign because of his physical limitations, I forged ahead and began signing with him.
Surprisingly, he not only picked up on it, but he signed well enough for us to truly begin communicating with one another.
As Kai’s 5th birthday approached this past February, I was beginning to resign myself to the fact that my son was probably not ever going to talk. We as a family were preparing to immerse ourselves full fledge into the Deaf community. We were already meeting weekly with a Deaf Mentor. However, by March, we started to hear words that we never heard before pop out of his mouth. Hard words, like…”opposite”, “Aunt Nanette”, and phrases like “I don’t know” and “I love mom.” At the beginning of June, Kai had 15 different spontaneous words per day and by the end of the month he had 30 different spontaneous words a day!
So what was the switch that turned on his voice? I believe it is a combination of factors. In February of this year, he had 5 root canals done. The lack of prenatal care and the neglectful conditions of the orphanage that Kai lived in, took its toll on his teeth. He also was in a dual placement of an Auditory/Oral and the local Deaf school. I believe that the signing provides a bridge and opens up neurological pathways for him. He also receives a copious amount of therapy and his body has becoming stronger and healthier each day. It could also just be an answer to many prayers. We have a long journey ahead of us with Kai’s speech and language. We are excited for him that he potentially will have access to different ways to communicate with others, either through sign or orally. His future knows no bounds! He has overcome more obstacles in his short life than most people ever do in a life time. If a child can be a hero, he is mine, because he inspires me daily. I am incredibly proud and honored to be his mom.