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Stephanie's Story
post Sun May 4, 2008, 09:43 AM
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Stephanie's Story

At 9 months my daughter was starting to call me from her crib. She began to babble and would say “Bye Bye” to me when I left her at daycare. At 10.5 months she had a high fever and ear infections that we had a hard time getting rid of. When she was 14 months, the dog barked right behind her and she wasn’t startled, I knew something was wrong. We contacted the pediatrician who immediately referred us to an ENT. The ENT felt her lack of hearing was a result of fluid she had in her ears. After we finished the medication and went in for a follow-up, the ENT felt we should give it more time. “After all, she doesn’t look like a deaf person” was his statement. I knew then that I had to fight to have testing done. Our pediatrician sent us for an ABR at 18 months, which confirmed our suspicions. She had a severe to profound loss in both ears. We immediately fitted her for hearing aids and enrolled her at the local school for the deaf.

My daughter rapidly began to learn signs, but was verbalizing less and less. I began to do research on hearing loss and available methods of communication. I read about Cued Speech in Choices in Deafness and was asking everyone about it. The comments that were coming back to me included, “It doesn’t work. No one uses it. She will never fit in with her deaf peers.” At that point I wanted her to fit into our family and use the same system of language that we were all using. Our representative at Early Intervention informed us of a center who just started offering Cued Speech. We checked it out and met with Amy Hurowitz, a deaf adult who had been raised on Cued Speech. We felt our eyes twinkle again for the first time in almost a year. The philosophy of Cued Speech matched our needs and Amy was so bright and understood everything! We wanted the same thing for our daughter.

Within a few months of using Cued Speech, Stephanie began verbalizing again. Her receptive language was increasing at a phenomenal rate. She understood that there were different brands of cereal and candy. She understood that people had first, middle, and last names. We could virtually say anything to her and she would comprehend it. I say virtually because it took me a few months to become somewhat fluent in the system. We learned the system in one evening session per week for 12 weeks. Since I worked, I could not practice the system until the evening when I used it with Stephanie. After attending a Cued Speech camp, it just clicked and I was able to keep up and interpret short conversations for her. Stephanie continued to grow in her receptive language, but her expressive was not coming along, partly due to the fact that she continued to lose hearing with each ear infection. We had an ear infection every two months even with multiple PTE tubes.

We attended the Helen Beebee Center and saw many children with her type of loss that were speaking as a result of the auditory-verbal therapy that they were receiving. We also saw several children who had received cochlear implants and were doing remarkably well. We knew then that if we wanted our daughter to speak, we needed to investigate the cochlear implant (CI). At the time we were beginning to investigate the CI, most children were being implanted by the age of two. The clinic we visited was concerned that Stephanie was almost five years old. At this point her hearing was classified as a left corner audiogram starting at around 90-95db and quickly dropping off between 250hz and 500hz.

The clinic we chose for Stephanie’s evaluation conducted extensive testing for about two days. The results showed that her receptive language (4.5) scores were much more advanced than her expressive (3.0). An excerpt from the initial speech and language testing shows how much impact Cued Speech had on Stephanie’s early years.

“Stephanie indicated age level understanding of vocabulary and only slightly delayed comprehension of grammar and syntax. She was acutely tuned in to language and made language associations without prompting throughout the evaluation. Her parents conversed with her freely and were excellent language stimulators. Stephanie combined words in phrases and used articles, pronouns, simple verb and noun modifiers, negatives and the present and present progressives. Early concepts such as ‘under’, ‘over’, ‘out’, ‘in’, ‘longest’, and ‘smallest’ were understood.”

The amount of receptive language along with some of the key markers of the English language were key factors in helping the clinic decide whether she would be a candidate for the CI.

For the first year of the implant, we used Cued Speech all the time. Any sounds, words, concepts, everything was cued to her. At her 6-month evaluation she was doing O.K. At her one-year evaluation, Stephanie's scores were amazing.

Hearing Aid (Pre-implant)
1-year post implant

PBK-50 Word Test
(Monitored live voice, auditory only,
and open set conditions) 0% words correct 60% words correct with 79% phonemes correct

Mr. Potato Head Test
(Monitored live voice,
open set conditions) Hearing Aid (Pre-implant) 1-year post implant

(Auditory only) 10% key words
10% sentences 25% key words
30% sentences

(Adding cues) 65% key words
70% sentences Not tested

The “Mr. Potato Head Test” showed that by adding Cued Speech her comprehension scores increased tremendously. The personnel at the clinic felt her scores were a result of using Cued Speech and internalizing the language she was being fed along with the new auditory input she was getting from her implant.

Stephanie was mainstreamed in first grade at a parochial school and her grades average between a B+ and A. At the end of second grade, the Basic Reading Inventory, 6th edition (Jerry L. Johns) reading test was performed on her and her comprehension level was at 4.5 grade level and her ability to decode was 7.1 grade level. She reads books voraciously. We take a weekly trip to the library and she reads about 10 third to fourth grade level books per week. In school, she has a full time transliterator, Teacher of the Deaf, and SLP services. She has learned some sign language from friends or providers. It is our intention to have her learn sign language at a later age so that she can communicate with deaf peers.

Stephanie is currently taking TaeKwonDo classes where she must learn the names of her forms, kicks and other exercises in Japanese. She must also be able to count, greet the instructors and thank them in Japanese. She was able to do this because I was able to cue these words to her and she learned them over time.

I also come from an Italian family and speak it fluently. I have taught Stephanie a few words in Italian through the use of Cued Speech.

Cued Speech is still part of our lives today. Although we do not use it for every word, we do use it in noisy environments, when she’s swimming, for a new concept, to help her pronounce a new word, or when she is extremely fatigued from listening all day. Just like the cochlear implant, it is a tool that has helped Stephanie achieve many successes, and it will continue helping her.

CUEDSPEECH.org > Resources > Parent Perspectives > Stephanie Pagano
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