My Story
My story began on October 21, 2004. I gave birth to my second child, Anthony. Approximately 4 hours after he was born, the nursing staff took him for all the routine newborn screening tests. When they brought Anthony back to my room, the nurse told me that he had failed the newborn hearing screening test. But not to be too concerned because 80% of newborns fail it due to various "normal" reasons. They told me to come back in a week and have him re-tested. I took him back as they requested, and once again he failed. Still keeping hope, they told me to come back yet again in two weeks to see how he was progressing. Again, we went back and he failed the hearing test the third time. At this point, the staff told me that there was an issue and that he needed to have additional testing completed to determine what type of hearing loss Anthony had. So they scheduled a sedated ABR test. When the results of this test came back it was heartbreaking. My beautiful baby boy was deaf with no way to fix him. I was so upset that I cried for days thinking that I had done something wrong either in my past and this was karma coming back to get me, or I had upset God so much that he was punishing me. The first six months of his life we had 127 different doctor's appointments and they told me everything under the sun was wrong with my son. The list is too long to list, but let me tell you, I was horrified at each new diagnosis. Then, inevitably, the tests would come back negative and they would say he was just deaf. I was put in contact with the Arizona School for the Deaf and Blind as we lived in Tucson, Arizona at the time Anthony was born. THEY WERE WONDERFUL!! My parent advocate Melissa was the only reason that I made it through his first two years. She came to my house every week and no matter what questions I had or "hairbrained" ideas that I came up with, she went back and tried to do as much research on them as she could and would come back the next week with her research in hand. I knew it seemed like I was only spinning my wheels, but I felt like I should be doing something. And unfortunately, Anthony's father had decided that if he ignored the problem it would go away. So all of the doctor's appointments and visits that I mentioned earlier I had to go to by myself. She was my only source of support in the "professional" capacity. After Anthony turned 2, I began to notice that he would occasionally turn to me when I would call his name. Not very often, but he would respond. At that point, ASDB fitted him with a hearing aid as his ABR results had indicated that he was profoundly deaf in his left ear, but only moderate to severe in his right ear. Which meant that he could have some hearing in his right ear. We began speech therapy, occupational therapy and Melissa continued her weekly visits as well. Unfortunately, none of this resulted in any progress for my son. He was learning sign language at a very rapid rate, which helped with his frustration at not being able to communicate.
I felt that this point that I had exhausted all my resources with ASDB, but I still felt that there was something more that was going on with my son that we had all been missing. I began calling around the country to different deaf and hard of hearing schools trying to obtain as much information as I could to try to figure out what was going on with my son. I then spoke with DePaul School for the Deaf in Pittsburgh, PA. The woman that I spoke with was wonderful and the most helpful person that I had found. After I explained my whole long and involved story, she told me that it sounded like my son was just like hers! But her son was not diagnosed as being deaf, but having Auditory Neuropathy. She told me to contact Dr. Charles Berlin in Tampa, Florida as he was the leading researcher on Auditory Neuropathy. He was an amazing man and most helpful. He looked over the paperwork that I had faxed to him and he told me that he believed my son was a perfect candidate for a cochlear implant. So, after talking with my daughter who was 9 at the time, we agreed that we would move to Florida to get the surgery for Anthony. He was implanted in December of 2007 and activated January of 2008. The results were IMMEDIATE! I went from my son, even with hearing aids in, not responding to me, to him jumping at the door slamming behind him after he was activated. I was once again crying but for very different reasons.
Now is where the real story begins. After having the implant, he should have had intensive therapy which he was not offered. He is now of school age, 3 years post activation and he is still not verbalizing. He babbles, but does not spontaneously use words. He is in Kindergarten with an active IEP. My goal for the IEP was immersion in speech to help him develop his speech and I have been informed that since he can communicate in sign language that is good enough for them! Well, let me tell you something, that is NOT GOOD ENOUGH FOR ME! I am his mother and what I want is for my son to verbalize "like a normal child". Which is where we are at now. I have begun to lobby congress to make services more available in schools and to make private schools who cater to these types of children easier to access. For anyone who is interested in more details of Anthony's story, please feel free to fill out the contact information on the helpful information page and I will be more than happy to speak to you privately.
Thank you for reading.
Dawn
I felt that this point that I had exhausted all my resources with ASDB, but I still felt that there was something more that was going on with my son that we had all been missing. I began calling around the country to different deaf and hard of hearing schools trying to obtain as much information as I could to try to figure out what was going on with my son. I then spoke with DePaul School for the Deaf in Pittsburgh, PA. The woman that I spoke with was wonderful and the most helpful person that I had found. After I explained my whole long and involved story, she told me that it sounded like my son was just like hers! But her son was not diagnosed as being deaf, but having Auditory Neuropathy. She told me to contact Dr. Charles Berlin in Tampa, Florida as he was the leading researcher on Auditory Neuropathy. He was an amazing man and most helpful. He looked over the paperwork that I had faxed to him and he told me that he believed my son was a perfect candidate for a cochlear implant. So, after talking with my daughter who was 9 at the time, we agreed that we would move to Florida to get the surgery for Anthony. He was implanted in December of 2007 and activated January of 2008. The results were IMMEDIATE! I went from my son, even with hearing aids in, not responding to me, to him jumping at the door slamming behind him after he was activated. I was once again crying but for very different reasons.
Now is where the real story begins. After having the implant, he should have had intensive therapy which he was not offered. He is now of school age, 3 years post activation and he is still not verbalizing. He babbles, but does not spontaneously use words. He is in Kindergarten with an active IEP. My goal for the IEP was immersion in speech to help him develop his speech and I have been informed that since he can communicate in sign language that is good enough for them! Well, let me tell you something, that is NOT GOOD ENOUGH FOR ME! I am his mother and what I want is for my son to verbalize "like a normal child". Which is where we are at now. I have begun to lobby congress to make services more available in schools and to make private schools who cater to these types of children easier to access. For anyone who is interested in more details of Anthony's story, please feel free to fill out the contact information on the helpful information page and I will be more than happy to speak to you privately.
Thank you for reading.
Dawn
