One Family’s Journey:
How Auditory Neuropathy &
Cued Speech Sent Us Home
I moved back to Colorado after having lived in the New York City area for more than a decade. I moved back for Cued Speech. I know that probably sounds crazy, but let me backtrack a bit.
My husband, Terence Tucker, and I both grew up in Colorado. We have three boys: Heath, age four, and identical twins, Cole and Max, age seven. Max is deaf and uses a cochlear implant, oral language, and Cued Speech. We moved back to Colorado last July so that Max could have a Cued Speech Transliterator (CST) in his classes and still attend the same elementary school as his brothers. All three of my kids now attend Summit View Elementary, Douglas County’s center-based Deaf/Hard of Hearing program. I realize this decision probably doesn’t make much sense to those of you who don’t know anything about Cued Speech, so let me clarify. Here’s our story.
When I describe Max as deaf, it is an accurate statement. He is deaf, but the cause of his deafness is a little unusual and that’s how we came to choose Cued Speech for our family. Max has Auditory Neuropathy in both ears. You may have heard the term in recent years, but most people don’t really know what it is. In simple terms, this means that Max always had the ability to hear certain frequencies of sound, but his brain is unable to receive consistent signals as to what those sounds are. Therefore, until we discovered that he had Auditory Neuropathy at almost three years of age, Max could very, very, very rarely understand anything we said and, therefore, was not developing speech or language. Anyway, as soon as we realized that Max had Auditory Neuropathy, we got into contact with an amazing audiologist, Dr. Charles Berlin, who was the only expert on Auditory Neuropathy that we knew of at the time and, in my opinion, absolutely the best. Dr. Berlin advised me to read the book “Choices in Deafness” by Sue Schwartz, PhD. I did and it was instantly obvious what our choice was for Max and for our family, cochlear implant or not - Cued Speech. We hoped that Max could be Oral so that we could understand him, but for the purpose of Max being able to understand us and achieve to his potential and at the same level as his hearing peers and, specifically, his hearing twin, we would immediately begin learning Cued Speech and using it at home. Please understand that I do not believe, nor did I ever believe, that signing could not be an option or that it shouldn’t be one; rather, my choice was based on our inability to learn to sign quickly enough to start communicating with Max immediately and in a meaningful way for purposes of his language development. I knew that learning to sign at a conversational level could take me years and with Cued Speech I could immediately begin using it with Max in the language I was already speaking - English. Max had already lost three years and I was in a hurry to help him catch up. I’ve never once regretted that choice and will forever be grateful to Dr. Berlin for helping me find it. Thank you, Chuck.
Whenever people first meet us and learn that we have a deaf son, the first question is always: “So do you sign?” My answer is usually something like “not yet.” I am beginning to learn because I understand and have always understood the enormous social value it will have for Max one day, possibly very soon. After giving my answer, I then inevitably launch into my explanation about Cued Speech, why we use it and how it is different than sign language. At first, it was simply incredible to me that there were so few people who knew about it. Over time, it has become more understandable to me, but still I remain disheartened that Cued Speech is not generally embraced by people who choose to be oral or to sign. To me, Cued Speech doesn’t really fall into either the oral or sign category and, yet, is such an amazing tool for deaf children, no matter what their families’ choice.
So (off my soapbox now), we made the choice to learn Cued Speech for Max, even before we had the green light to get him implanted (at the time, cochlear implants had worked for a few kids with auditory neuropathy and we thought it worth a try.) The surprising thing to me and to nearly every person I relate the story to is that learning to cue only took me one weekend. We still lived in New Jersey at the time and had a Cued Speech Instructor from New York City come to our home to teach us and our regular babysitter (from Mexico, no less), how to cue over a weekend. By the second morning, I had already learned the entire system and I was ready to start Cueing for Max. It really was that easy. Admittedly, I was cueing very slowly, but after six months of regular practice and cueing the ABCs over and over and over again to my twin three year olds, low and behold, I was fluent. I never looked back. For over two years I was pretty much the only person cueing for Max while he attended a full-day Oral Deaf preschool in New Jersey. When it was time for Max to start kindergarten, having surpassed his Oral Deaf preschool classmates (and hearing peers, for that matter) with reading abilities that absolutely shocked his teachers. (Improved reading skills is the intended outcome of Cued Speech, by the way!) We mainstreamed him with a cueing paraprofessional. Max was far from understandable speech-wise, but academically, no problem. Our school district in New Jersey was wonderfully receptive and accepted with open arms their first deaf student with a cochlear implant. They even trained a paraprofessional to begin cueing with Max during the day. Thank you, South Orange/Maplewood School District!
Unfortunately, we began to realize that educating Max in a fully mainstream environment without Deaf/Hard of Hearing peers wasn’t what we saw as an ideal situation for him. New Jersey has a public Oral Deaf program and a Total Communication program (which in New Jersey equates to a purely signing program.) Unfortunately, the Oral Deaf program wouldn’t agree to Cued Speech and Max didn’t sign. We began to look for other options. In the Cued Speech community, it seems an obvious choice that if you want Cued Speech for your child, you go where it already is – there are pockets around the country that have Cued Speech in their Deaf/Hard of Hearing programs. So I guess we could have done that. Unfortunately, we had no real connection to any of those places and my husband and I are both from Colorado. I decided to look into the schools in Colorado and was absolutely amazed at what I saw. We chose Summit View Elementary in Douglas County because they had a very welcoming, though fairly new center-based Deaf/Hard of Hearing program. Cued Speech? No, but they said they had heard of it and would learn. Even before we moved to Colorado, I was getting emails from the head of the Teachers of the Deaf, Karin Leonard (herself Hard of Hearing), asking about learning to cue and how to get an interpreter trained as a CST. Thank you, Karin!!
We moved to Colorado and we now have what we feel is the best of all worlds. Our kids get to go to the same school, they have both hearing and Deaf/Hard of Hearing peers and teachers, and Max has a full time CST, Anna Liljestrand, the first ever (as far as we know) in Colorado. Anna is a lightning fast learner and clearly committed to knowing how to cue accurately. Thank you, Anna! Max’s SLP, Sabrina West, has learned to Cue as well and is using it in his speech therapy sessions. Thank you, Sabrina!! There are even a few more kids at Summit View who are now benefiting from Cued Speech. The staff in Douglas County has really just jumped right on board. Thank you, Douglas County!
We also had a great surprise bonus when we moved to Colorado in July 2008. A Teacher of the Deaf who was moving from Illinois and had been working at a Cued Speech school, the AG Bell Montessori School, happened to be relocating to Colorado and was looking for a teaching position. Emily Dudas applied for an open position in our District and, voila, Max got a Teacher of the Deaf who cues, signs and teaches oral kids. (By the way, you can Cue the word “voila” just like you can cue anything else you can say). Emily is a certified Cued Speech Instructor, as well. We are both getting to know Colorado together while serving as Co-Representatives for the Rocky Mountain Region for the National Cued Speech Association, a task we are both passionate about. We have held one Cued Speech learning workshop last spring and will be holding regular workshops starting this fall. Everything is working out great here for us – the first of hopefully many cueing families in Colorado. Spread the word – we’re here!! If you would like to learn more about Cued Speech or would like to learn to cue, contact me at firstname.lastname@example.org or visit the National Cued Speech Association website at www.cuedspeech.org. ~