Our Communication Choice
The day after Jake was diagnosed as hearing impaired, I purchased books about Signed Exact English (SEE) and American Sign Language (ASL), at the suggestion of the otolaryngologist. I picked out some simple signs that I felt a thirteen month old needed to know to get some sort of communication going. I quickly learned eat, drink, stop, yes, sleep and the most frequently used sign, NO. At that time, I had no idea there were so many methods of communication that could be used with deaf children. I thought that some form of sign was the only method available to us for Jake.
On our first visit with Dr. Berlin, he mentioned a communication tool called Cued Speech but didn't elaborate at that time. We received an informational binder from an organization called "Beginnings for Parents of Children Who Are Deaf or Hard of Hearing" that provides unbiased information on communication methodologies, referrals to other support systems and advocacy, among other things. We read the binder in order to learn more about hearing loss and communication methods. It was very helpful to us as a starting point.
We also learned of an excellent book called "Choices in Deafness" edited by Sue Schwartz, at a support meeting for parents of hearing impaired children. We borrowed the book from the public library and read more about the choices we had. There were so many methods to choose from : American Sign Language, Signed Exact English, Cued Speech, Auditory Verbal, Total Communication and Auditory Oral approaches. We knew that if at all possible Jake would be educated in an oral approach. Would we make the "right" choice? How would we know what the right choice was? Would he hate us some day for choosing one method over the others?
On our second visit to Dr. Berlin, we received a book called "The Cued Speech Resource Book for Parent's of Deaf Children" by Orin Cornett and Mary Elsie Daisey. I read the information about Cued Speech and tried to learn the handshapes and positions utilized in this method. I managed to grasp a few of them, but it wasn't recommended you try and learn from the book. The basic system could be learned in a weekend of face to face instruction, then you must practice to gain speed and fluency. The book contained wonderful success stories from families that used the cued speech method. I wondered if it could make all those wonderful things possible for Jake.
A few weeks later, after reading and re-reading the information, we decided to try cued speech. It was the method recommended for use with children with auditory neuropathy because it instilled the basics of English language. With Cued Speech he would be able to see the syllables of words cued as I spoke. It would allow for an easy transition to spoken language if he were fortunate enough to have improved hearing at some point.
Although it is rare, some children with Auditory Neuropathy caused by high bilirubin levels as infants do regain some hearing. I knew that chances were Jake wouldn't, but I could always hope. Jake's Speech Language Pathologist's, helped us make arrangements for a charming lady to come to our town and teach us the basic Cued Speech course. Her deaf son was featured in the Cued Speech book we had received from Dr. Berlin.
It took two full days to learn the basics and then the practice drills several times a day to memorize the system. I practiced for hours trying to drill the system into my head so that I could communicate with my child. He was obviously puzzled by the movements and was amused by it but he was watching me. I felt that if he was watching me that was a start to real communication for us. We continued to use the signs that we had learned because it takes the child a while to learn the system of cued speech. Before long Jake was signing the words eat and drink when he was hungry and NO whenever he didn't get his way.
There were so many choices for us to make concerning Jake that it was sometimes overwhelming.