One Family’s Story:
Growing as an Advocate for Alyssa Naomi
I remember asking myself if I really needed to attend the Georgia Hands & Voices workshops and conferences in my area. My weekends are like gold. I wasn’t really sure if I wanted to spend them talking about my daughter, who is hard of hearing and how hard life was going to be (at least that’s the way it seemed to me then.) My daughter was born ten weeks early. On the day I brought her home from her three month stay in the NICU, I was told that she didn’t pass her newborn hearing screen. She was either profoundly deaf or had Auditory Neuropathy. Three months later the Auditory Neuropathy diagnosis was confirmed. I didn’t know what to think or what to do. I was devastated.
After a six-month trial with hearing aids and almost no progress as far as any listening or language skills, I made the choice to begin the process for her to receive a cochlear implant. Alyssa Naomi received her first implant just before her second birthday and in six months she made more progress than she had in the past year. I decided to have the other ear implanted. Her second implant was activated just over six months later. She took to both implants very well and I was thrilled at the progress taking place.
All the while, I attended every H&V event in my area. It was nice meeting other parents who could relate, and also being surrounded with professionals who cared. I met different audiologists and teachers who were familiar with all forms of communication methods and had seen progress in every area. I knew that our IEP meeting would be approaching since my daughter’s third birthday was just around the corner and I was reminded of what to expect from the transition process at a GA PINES workshop (SKI HI program) just weeks before our actual meeting was to occur. I really didn’t expect there to be any difficulties since I live in a metro area and was sure my county had served other kids like Alyssa Naomi, who used auditory verbal/oral communication, appropriately in the past.
My concern arose when I heard a rumor that my county had discontinued the oral program and that the kids with hearing loss were being served in a total communication (TC) classroom. This rumor was confirmed at the first IEP meeting. I remembered what I learned at all the meetings and workshops about the Deaf Child’s Bill of Rights and FAPE (Fair and Appropriate Education) and I knew that the placement options I was being presented with were definitely not appropriate for my child. I left the IEP meeting without signing the document and in tears.
The TC classroom I observed had only one speaking child and my daughter doesn’t know sign language. Another option presented to me was to place her in a general education classroom with children nearly two years older with support from a Deaf Educator. Looking through the Deaf Child’s Bill of Rights, I knew this was hardly appropriate concerning peer groups and definitely not academically. These students would be learning things far advanced for my daughter who has the language skills of an 18 month old. At this point I was more than frustrated.
At the second IEP meeting I expressed all of my concerns to the team. My GA PINES parent advisor came with me for support, but after the team presented a new placement option to put Alyssa Naomi in a non-categorical special education classroom, I knew I needed something more. My voice was not being heard. It was great that a GA Hands & Voices meeting was the following weekend; I knew I needed to be there to get some help.
What happened next? During the meeting I was able to speak to a professional who worked within the school system and who also serves on the Board of the GA H&V chapter, Dr. Frank Nesbit. He was able to answer my questions and concerns and had the ear of the administrators that I was trying to reach. The program that existed previously in my county would have met my daughter’s needs, but for reasons that are still unclear to me, it was no longer available. Recent local news reports of county-wide budget cuts and teacher furloughs led me to believe the oral class was cut due to budget constraints. Then, a wonderful parent, advocate, and H&V Board member, Yolanda Head, came with me to my third IEP meeting. She coached me, she empowered me, she supported and she educated me. It was amazing how the tone changed at the third IEP meeting. It helps a lot to have that extra support around the table, which can be an intimidating place for a parent. At the meeting we were told that the county recognized the need for the oral program and that it was going to be brought back next school year. We had won the battle for Alyssa Naomi and all the other children who would need to be served in the county through an oral program.
Until the next semester begins in August, Alyssa Naomi is receiving services two days a week in a non-categorical special education classroom with a speech therapist and Deaf Ed teacher pulling her out each morning for individual therapy. There is still much work to be done and I know that she is not where she needs to be, but I know because of the support I received and the advocacy skills that I learned, Alyssa Naomi will catch up to her peers and one day be mainstreamed. Alyssa Naomi needs to be around typically developing peers and have language models in the classroom. I am eager to see what is brought to the table at our next IEP meeting in May. I will accept nothing less than what is appropriate for her. School is almost out and I am ready to see the changes made for the next school year. I am hoping for a teacher with experience teaching av/oral kids, who knows how to use the equipment and is able to provide an optimal language learning environment for my daughter and other students in the classroom. I have come a long way since that first meeting, personally, as a parent of a child with hearing loss and as an advocate for Alyssa Naomi. This situation is not ideal, but I am hopeful that by the next school year, my daughter will be on her way to reaching her full potential.
For more on Ellyn’s story or Georgia Hands & Voices, please visit our website at www.gahandsandvoices.org. ~