One Family’s Journey:

Unexpected Opportunities

By Glenda Arave, Idaho H&V

I would like to start this story with a little history about my daughter Shaylee and I. Shaylee always asks me, “Mom, are you sad that I was born hard of hearing?”  I always respond to her that her hearing loss has offered me the opportunity to learn more things, meet great people and be exposed to a life and parts of the world that otherwise I likely would not have had the chance to experience.

My experience started when Shaylee was three. I was a single working mom. I took some extended time off from work and noticed during that time that she was listening to the TV at a very high volume. I asked her to turn it down; she responded that she would not be able to hear if she did. With concern, I took her in to the doctor the following day. The tests began. They put her on meds to clear any infections, and then decided to put tubes in her ears. Tubes did not improve her hearing, so we were sent to a specialist. I learned that my daughter had a progressive hearing loss, and that at some point she would go profoundly deaf. However, there was no way of knowing when that would be, so we continued to live our lives as normally as we could.   

Making a Promise

Then overnight—literally overnight--she woke up profoundly deaf. She was six years old at the time. I took her right to the doctor. He indicated there was a regimen of steroid medication that he could prescribe but that there was no certainty of regaining any hearing. This is the point where I realized that I had not really been prepared for this to happen. I had not done anything to prepare her, me or any family members for this.  This was a hard time for me and as such I made a promise to my daughter and myself. I wrote it on paper so she could read it. I promised her that I would do everything I could to help her and that she could count on me. Most importantly, I let her know that I loved her no matter what.  I was on the phone the next day calling different resources that could offer me information, direction, and advice. I got in contact with the Idaho School for the Deaf and Blind (ISDB) and got hooked up with an outreach counselor who was of tremendous assistance.  She helped us with the next steps and what some of our options were. She was such a valuable asset to our family. Shaylee bonded with her right away. The steroid treatment did bring back some hearing in her left ear but not in her right ear.  However, with Shaylee’s progressive hearing loss there was no way of knowing how long she would have any regained hearing levels. The outreach counselor helped us get loaner hearing aids and got us in contact with services at ISDB. I had embarked on keeping my promise to my daughter.

I had placed Shaylee in public school for preschool. Because of the language delays associated with her hearing loss, she was placed in preschool at five years of age and stayed for two years. Kindergarten went pretty well, but by the time she was in first grade, the “No Child Left Behind” emphasis on testing was in full force. Her teacher seemed more interested in my daughter’s reading stats than in helping Shaylee really learn to read. With Shaylee’s difficulty with comprehension and understanding of the breakdown of phonic sounds, it was a hard year. Plus, I didn’t know what our rights were in regard to Shaylee’s IEP. I did not protect Shaylee and her access to information as well as I could have and helped to enforce her rights as I know now can be done. We were very lucky in her next year, as her second grade teacher was a skilled, involved, and thoughtful male teacher. By third grade, I decided that she would benefit from the direct instruction in sign at ISDB. For fourth grade and part of her fifth grade school years Shaylee went to ISDB and learned ASL. In the middle of fifth grade, I decided that she needed more parental guidance through her teen years, and moved her back home. 

Impacting the Community

We were better prepared in our understanding of Shaylee’s rights to an education and the unique needs of a hard of hearing child this time around. Shaylee’s knowledge of sign language also helped her be better prepared in her adjustment back to public school. The first thing we did was to ask for an interpreter. Shaylee had a terrific interpreter!

The interrupter asked the school if she could work with Shaylee in designing an after school program one day a week to teach ASL for students in the surrounding area. The school approved, and off it went. There were over 40 children from as far as 20 miles away attending every Monday for over sixteen weeks. The most important part of this opportunity to me was bridging the gap between Shaylee and the other kids. She was able to fit in and was not so “different” once the kids began to learn ASL.  A huge void began to fill in for Shaylee. The kids could better understand her and she felt more “part of the group.” Not only did she fit in better, but the common communication allowed my daughter to become a leader.  The school community embraced the offer to better understand deafness and ASL. Shaylee’s school counselor pulled me aside and expressed how wonderful she thought this was and her comment has stuck with me. She said that these kids may be influenced by this opportunity to choose a career path that involved working with people who had special needs, may be able to better connect with someone who signs later in life or gain a better understanding of individuals who have differences because their lives were touched by my daughter. 

When Shaylee was in sixth grade she had a new interpreter. Her new interpreter was more then willing to continue with this great afterschool class, as was the new middle school.  Even high school kids attended that first class.  Shaylee is now in seventh grade with and is doing pretty well.  Having an interpreter has definitely benefited her academically.  She now teaches ASL in her homeroom class and whenever asked at church or other functions.  Shaylee’s older sister is doing her senior project in high school about having a sister with a hearing loss. Her sister has been doing a lot of research and learning ASL herself. Shaylee’s hearing loss has afforded our family and me a long list of opportunities, and now we get to see others gaining from opportunities, also. How cool is that?