Help Me Hear Foundation is a 501(c)3 non-profit public charity. Our tax ID# is 33-1167811.

Our experience raising our daughter, who has a bilateral severe to profound hearing loss

Our first two children, both boys, were normally hearing. Our third child, a girl, was born in September, 1990. We named her Ashley.

Ashley was a peacefully quiet baby. She slept soundly through the night, and, during her first month of life, through a noisy birthday party at Chuckie Cheese. Her first year of developmental milestones were within normal limits, except there was something different. I could never put my finger on it until her 6 month check-up. The doctor asked if she turned to her name; I thought and responded, "Yeah, she does." But inside I knew that she didn't. Or did she? Of course I went home to test her myself.

Our extended family also tested her privately. We were all curious, but not sure what was different. Maybe the reason my family was quiet about this was that I had had several recent shocks. My mother had been diagnosed with ovarian cancer and died in 6 weeks, 2 months before Ashley was born. My family, I believe, was protecting me from another shock, until I could handle it.

Still, I was worried. She did not seem to be responding. Finally, a week before her first birthday we had an ABR test done on her. Her hearing loss was diagnosed as "sensorineural, bilateral, severe to profound". We went home and thought, "What do we do now?"

The next day we went to a support group meeting. We heard the opinion of a deaf couple, and of several hearing parents raising deaf children. The opinion of the deaf couple was that we should certainly enroll Ashley at the state deaf schools at the age of three; they would be her family. My response? NO WAY! I might not have known what we were going to do, but I knew that the Lord God Almighty gave us this beautiful child and He would meet all our needs that would arise. (And He has!)

The other hearing parents pulled us aside, talked with us, and encouraged us to get in touch with the IU. So we connected with the IU, received loaner hearing aids, and started working with a teacher who visited us at home twice a week. We also started having sign language classes in our home. Ashley started speech therapy classes with Easter Seals and we received information from John Tracy Clinic in CA.

I continued to dig for information in all kinds of books, doing research on all methods of communication with a deaf child. (ORAL, CUED, TC, ASL) I started taking sign language classes at Deaf Services. I got connected with deaf adults who had hearing children, visited the deaf church, visited deaf schools... I did whatever I could think of to become knowledgeable and get grounded.

Next, I started to babysit a child with an implant. She had be using it for 6 months when I first met her, and I watched her for another year. Her progress was not what I thought it should be — too slow! — but now I see that I thought so because I did not completely understand all that I do now. Learning to hear and process language takes time — same as for newborn babies who receive and receive language for months and sometimes years before they express it. So, I went along with this family to their doctor's office, observed a few children, asked many questions, and continued to learn alot. The FDA had just approved the implant for 2 year olds and our BCBS would pay the whole bill and Ashley would most definitely qualify. Still, we were frightened. We had no peace — do surgery on a young child????

Our deaf friends said sign language is the way to go. More than once they told us, "sign is her natural language". At the age of two, she was communicating effectively and understanding receptively. Ashley really knew the purpose of her hands for language, just as a hearing child knows the purpose of her voice. Our family and the families at church learned sign language. The support was wonderful. There was my peace: I could have a break at church. My sister-in-law, my nieces, and friends would interpret for Wednesday night and Sunday mornings.

So why should we get an implant for Ashley? The door closed — for us — on the implant. Ashley continued to learn sign language, have speech therapy classes, and I continued to take classes.

But life surprises us, doesn't it? At age 5, the door once again opened for the implant: The hospital near us (10 miles away) was now doing implants. Our friends highly recommended the staff there. Our private speech therapist was seeing a boy who was getting an implant at this hospital. So we took a look at all the information on the children that had been implanted at age 2, which by this time, was 3 years of information. I actually went to the hospital's library and read all the information I could get my hands on, good and bad. I saw surgery videos. I read medical articles.

But this boy who received the CI unfortunately did not respond well to the implant. He actually did better with his hearing aids. He had had spinal meningitis, which causes ossification of the cochlea (bony growth) and there is a chance that the CI will not work if it is implanted too late after meningitis. So again the door closed. I said to myself, "See there; it doesn't work." There were a lot of opinions running through our minds — DEAF VS. HEARING CULTURE.

Even still, this thing refused to stay settled. Around the age of five, Ashley was realizing that she was different, that not all people knew sign language. Why not, she wanted to know? Her signing skills really took off, but others did not continue to take the sign classes. The support of the immediate family was strong, and is still with us today. Her cousin signed before he talked. Another cousin is considering the study of deaf education at college. At church my nieces still continue to interpret, and two very dear friends have continued to improve their signing skills. Bless them all! Friends in the immediate neighborhood were learning sign. But there were of course limits. It is best for Ashley to have one hearing friend at a time with her. Two hearing friends talk and forget to sign... So Ashley's desire to hear better, and communicate vocally began to grow.

Because of the involvement of so many people signing, and because we signed all the time at home, Ashley's language skills, when tested in ASL were above her age, and have continued to be right through to the present.

By the age of eight, Ashley, having received 7 years of speech therapy and sign language, had reached her limit with speech. Her speech receptive threshold was only 60 dB with her powerful hearing aids; she never heard within the speech banana and I began seeing more and more limitations with her reading vocabulary. This seemed clearly related to sign language (AMESLAN) and its relationship to spoken English. For example, for one sign there are in some instances over five different English words. We have home-schooled Ashley since the age of three, all along with the guidance of special-ed teachers. So, again the question: What do we do now?

The family of a little deaf friend of Ashley's started to investigate the implan at the hospital I mentioned. This family shared some amazing information on how well the kids who were implanted at the age of two (and even older) were doing. We really had to look into it again. So in February 1999, we made an appointment with the hospital staff and sat and discussed it for four hours. We continued with hours and hours of new research on the Internet. I got connected with a teenage girl implanted at about age eight. She was still using sign, but she can also talk and communicate quite well without sign. We met with another family that had their surgery done at this same hospital and it was a very positive experience. Again we met with the specialists, and with other implant families. And had the uplifting experience of having our church family praying with us until our final decision.

Of course I had worries, after seven years of sign language, and so long a time as a skeptic. How could I make my hands stop enough for Ashley to listen enough with ears and not her eyes? Our deaf friends happen to have hearing children, and they also happen to use their voices and sign at the same time. So, we thought, let's explain this all to Ashley. "Do you want to be able to talk, to hear the birds, and to use the phone with your friends?" Again and again, we would discuss it with her over the next 4 months. We explained the many hours of A/V therapy required of her for the implant to work well. She knew it would be difficult, but Ashley was growing more and more interested in the implant. She expressed hopes and desires: to be able to talk with her friends; to know what is happening in public and in a discussion where no one was signing. I don't believe we built her hopes too high, that she would understand immediately, but that it would take years, and it would take hard work.

She decided yes. We decided yes.

Of course, that was not the final drama before implantation. There was another hurdle: After a long battle with our insurance company they agreed to pay for the implant.

Ashley's surgery for Clarion-S was May 25, 1999. She was "turned on" June 29th, and her new audiogram is between 20-25db. She is processing the information she is hearing. She is lip-reading which she never did before, and her speech is much more intelligible. She clearly is happy with the results so far. She completely manages the implant, changes the batteries by herself when she is away from home.

The most exciting and tearful event which sticks in my mind happened 3 months after the implant: Ashley heard birds signing, and she cried. We called everyone!

We are thrilled with the progress in one year. We know there is still a long road ahead of us, but as we proceed, we see the fruit and the benefits. Now Ashley will answer the phone, say hello and hand it to me. It is happening; she is hearing and processing this information. It will be exciting to see what happens over the next 4 years. I believe she will still be signing, but also will be able to speak more clearly and hear with complete understanding.

We praise the Lord Jesus Christ for the scientific advancement of the cochlear implant. We hope and pray for the children in need of the implant, that their parents will learn about it and that insurance companies will pay for it.

Thanks for listening to our experiences in raising our daughter, Ashley.

Douglas and Carolyn Logan

 

The burden of hearing impairment and deafness falls disproportionately on the poor, because they are unable to afford the preventive and routine care necessary to avoid hearing loss, or to afford [devices] to make the condition manageable. Hearing impairment can also make it more difficult to escape poverty by slowing progress in school and the workplace, and placing people in social isolation….The cost of special education and lost employment due to hearing impairment can also impose a substantial economic burden on countries.”

– World Health Organization