By Preeti Kochar
The Diagnosis
After many years of wanting a child we finally had a beautiful daughter, she was perfect and very alert. We named her Prachi (Sanskrit for the East). At two weeks old, my mother, who was visiting from South Africa, told me Prachi was a very bright child. My mother normally wore glasses and if she didn’t have them on, Prachi would just stare at her.
After many years of wanting a child we finally had a beautiful daughter, she was perfect and very alert. We named her Prachi (Sanskrit for the East). At two weeks old, my mother, who was visiting from South Africa, told me Prachi was a very bright child. My mother normally wore glasses and if she didn’t have them on, Prachi would just stare at her.
Soon after, we rented the movie “Speed”, a thriller and Prachi was asleep on my lap. At one point the music suddenly came on very loud and Prachi just kept sleeping. Something inside me said this is not right. At the two-month checkup, I told the pediatrician that I didn’t think Prachi could hear. She asked me why I thought so. I said, “She doesn’t startle with loud sounds.” She then asked me if Prachi startled at all. “When she sees me approach and she’s not expecting me,” I said. The doctor used a little tinkling bell and told me Prachi hears fine because she looked at the bell as it was rung. Finally, at the 18 month check-up the pediatrician asked me to call Prachi from outside the room. Of course she had no response and we were told, “it’s time for a hearing test.”
The school audiologist got no response at any frequency while my husband Manish and I were cringing from the loud sounds in the booth. The audiologist said we needed a Brain Stem test and later confided in the pediatrician that she thought Prachi was autistic! At 19 months we got the diagnosis that Prachi was deaf – she had severe to profound sensorineural deafness. I felt cheated because I had been talking to my baby before she was born assuming she was hearing me. At the same time, I was relieved that there were no other issues – She had plain vanilla deafness. If the pediatrician had paid heed to my concerns Prachi would have been diagnosed 16 to 17 months earlier. We had lost precious time.
What Now?
We were not familiar with deafness and did not know any deaf people. I went through a week of intense grieving – all I could do all day was cry. I kept dreaming about Prachi walking down a street with a driver desperately honking to get her out of the way and she could not hear the car. How were we going to communicate with her? How was she going to fulfill her dreams and aspirations? I knew she was a very bright child and had the potential to excel in some field. After all, I knew she was smart before I knew she was deaf! I remember hugging her one day after I accepted that she was deaf and saying to her “we’ll deal with this together you and I, whatever it takes, together we’ll make it.”
Deafness affected our whole family, not just Prachi. We assumed that the only means to communicate with her was signing and we bought “The Joy of Signing” and set about learning the manual alphabet and some signs. Soon, it was getting pretty tedious because each time I wanted to tell Prachi something I didn’t know how to do it. For example, on a walk I’d think “When I get home I’ll look up the sign for a tree and the sign for dog.”
My husband was even more frustrated with trying to figure out how to communicate with Prachi since he didn’t see how he could ever get fluent enough at signing to communicate fully with Prachi. This lasted about two weeks till his engineering training kicked in and he searched the Internet for modes of communication and learned about Cued Speech. He printed out the information and showed it to me the next day. I didn’t understand too much but it seemed like a finite amount was involved in learning the system. It was English and not a new language. Being raised in India we were both exposed to multiple languages and aware of how complex it is to get fluent and native in a language. So, we decided to find out more about Cued Speech.
Fortunately for us, Prachi was being seen by the audiologist at Children’s Hospital in Washington D.C. and she recommended that I see Kristy Ketchum, the Speech and Language Pathologist to learn about choices in communicating to a deaf child. When I spoke to Kristy I was amazed at how hard it would be to provide English through Sign Language (and finger spelling). It is virtually impossible to provide one language using parts of another. One would never use Hindi words to teach a person English and yet some of the professionals I had seen were using signs (borrowed from American Sign Language) to teach English. Imposing the grammar of one language on another does not work.
Manish and I were convinced we had to start using CS with Prachi and we needed to start soon! Linda Balderson, a mom of a deaf teenager came to our rescue. She invited us to her home and gave us our first lesson and we started cueing to Prachi at once.
She’s Getting English!
Prachi started understanding some words “Daddy” “cookie” “bye” “baby” within a few days. She was hungry for language and we were enthusiastically feeding her hunger. She started vocalizing some of the words – “no” came very soon! Now, when I went for a walk with her I could cue “dog” and also “the dog said bow wow”. Of course, I was a slow cuer and that was fine. We did our best to have everyone who worked with Prachi learn Cued Speech and Manish and I cued to her every chance we could. Each situation was a chance to provide language and develop her vocabulary. It was amazing how fast her receptive language was developing. She learned twenty words in two months, and within five months she understood about a hundred. I was very encouraged but I realized a hundred words was not a lot as I sat in my kitchen and counted about fifty words within a few minutes.
At the time I was an Adjunct Professor at Loyola College in Maryland and was able to arrange for therapy from the Speech and Language Department at the college for Prachi. Dr. Kathryn Copmann was a wonderful resource and she kept reassuring me that Prachi was right on track. “Two years” she would say to me “receptive language takes two years to develop and then you will see expressive language.” Milestones along the way were very encouraging. One day as we got ready to go out, I absently cued “where’s the hairbrush?” and started looking for it. Prachi came running to me and handed me the hairbrush. What a feeling of triumph I had! My little girl was understanding English, no doubt about that. I would test her to reassure myself that cueing really worked. For instance, I’d ask her “Is this a dog or a doll” while holding up her doll. The cues for doll and dog (the way I say them) are very similar. She’d answer “Doll” without hesitation. Prachi vocalized and cued expressively. Her speech was unintelligible to everyone except to Manish and me.
Going It Alone
Prachi was the only Cue Kid in Howard County, MD and she started using a CS transliterator by age two. All the CS veterans thought it was not a good idea to use a transliterator for one so young, but we had no choice. At 30 months, Prachi’s language was found to be that of an eighteen month old. Again, Dr. Copmann assured me that Prachi was language-delayed (due to the late diagnosis), not language-impaired (ability to process language).
We enrolled Prachi in a private preschool/daycare, Goddard School a little before she turned three. We paid out of our pocket to have a transliterator there because Howard County flatly refused. It was expensive and I would ask Manish “Can we afford to pay a transliterator?” His answer was “Can we afford not to?” Time has shown us it was worth every penny. Prachi used a transliterator very well and proved that even a young child can use a transliterator. Maybe most other 2, 3 and 4 year olds would not be mature enough to use a transliterator, but Prachi was thriving. She realized that it was the teacher’s words that the transliterator was cueing before age 3.
Robin Kittleman who was her transliterator for a short while said, “When the teacher asks Prachi a question, Prachi turns to me – such mature use of a transliterator.” When Prachi was three and a half we moved to Minnesota because of Manish’s job.
Language at Age-level and Beyond
In Minnesota, at 3 and a half years Prachi was in a White Bear Lake (WBL) area public school Early Childhood Education Center. She was mainstreamed half of the time and in a language-intense group the other half.
At age four, Prachi went to the WBL public school for half the day and for the other half she was in a private preschool and daycare. The school district provided a CS transliterator at both settings.
When tested at age 5 years, 6 months she was found to be a Gifted and Talented child. The Preschool Language Scale-3 was administered to evaluate Prachi’s communication skills. The test is comprised of two sub tests, which evaluate comprehension and expressive communication:
- Chronological Age: 5 years, 6 months
- Auditory Comprehension: 87th percentile. Age Equivalent Score: 6 years, 5 months
- Expressive Communication: 95th percentile.Age Equivalent Score: 7 years, 2 months
- Total Language Score: 94th percentile. Age Equivalent Score: 6 years, 9 months
Prachi Today
Two months before she turned six, Prachi became a big sister of a brother, Sahil. Having a second child has been quite an experience. On the one hand I cannot give her the attention she got as the only child, but on the other hand it is wonderful to watch them interact. We expect Sahil will cue to Prachi. He loves it when we cue to him and feels grown up, like his sister.
Today, Prachi is a first grader. Her reading level when it was tested six months ago at age 6 years and 6 months was that of a mid third-grader. She is an avid reader. Over the summer she read the four Harry Potter books. She loves mysteries – Nancy Drew, A to Z Mysteries and Boxcar Children are her favorites. She now grows her vocabulary on her own through reading and uses it correctly, often mispronouncing it (e.g. digital instead of di’j’ital). I often joke to her about those silly, unexpected spellings. Once I told her that someday we need to change the spellings to reflect the pronunciations (e.g. eye, aye, I are all pronounced the same way). Her reply was “Sorry Mummy, only the President can do that!”
Prachi receives speech from a cueing clinician, Linda Lacher-Goddard, and is making steady progress with her speech. Prachi uses Impact hearing aids with FM from AVR Sonovation. These aids transpose the high frequencies to lower frequencies, making it possible to hear “s”, “sh”, etc. sounds. The sounds are distorted but consistent in speech. The most frustrating part has been the eczema she gets in her ears which prevents her from wearing her aids through all her waking hours. We recently started using a new cream and she’s able to wear her aids all day.
Prachi is learning Hindi as a second language at The School for Indian Languages and Culture. Manish and I have revised the Hindi Cue Chart we were given by NCSA to more accurately reflect Hindi phonemes. It is interesting to see Prachi vocalizes what we cue often without understanding what it means. I call it “echoing” and when we visit the Hindu temple on Sundays, she often joins in when we sing hymns in Hindi as I cue them.
We are lucky to have a bright little girl but even the brightest child does not pick up a language without access to it. As we celebrate Prachi’s seventh Thanksgiving, I am thankful to Dr. Cornett for inventing Cued Speech, so we can make English accessible to Prachi and allow her to realize her academic potential now and in the future.
