In March of 2003, at the age of two and a half, Hunter was found to be profoundly deaf. We had our suspicions for quite some time that something was wrong, but not until we had his hearing tested did we learn that our lives would be forever changed. When Hunter was 2, we had his hearing tested by a so-called “professional”. He said that there was nothing wrong with Hunter’s hearing and that he just needed a speech therapist to get him to talk.
Several doctor visits, specialist visits, and clinics later, we started to realize that the problem was much worse then we had even imagined. After a sedated CAT scan, it was determined that both of Hunter’s cochleas were deformed (common cavity disorder) and underdeveloped and the hearing nerve on his right side did not exist at all.
After doing much research and talking to several people, Shelly and I decided to set Hunter up for a cochlear implant.The surgeon estimated that Hunter would have an 80% chance to get 80% of his normal hearing back on his leftside.
The surgery was in November of 2003 at Mott Children’s Hospital in Ann Arbor Michigan, 500 miles from home. A month later we went back down to Ann Arbor and had him fitted with the external device that will allow him to hear over time. After he had the device activated in December of 2003, I took Hunter to Ann Arbor 21 times until Christmas of 2004. Hunter was a very determined little boy. Strong as a bull moose and pushing 35 pounds, he was by no means easy to control. His nickname at daycare was “bulldozer,” but we all managed quite well.
In the spring of 2005, Hunter and I made our second to final trip down to the University of Michigan Cochlear Implant Facility. After one and halfyears of trying everything the hospital could do and some $100,000 later, his cochlear implant did not work. He could hear very high pitch sounds and very low pitch sounds with the aid of the implant, but nothing in the normal speech range of hearing. The only thing that could have been wrong was that his hearing nerve was far more damaged or underdeveloped than the surgical team was able to originally determine. This was, to say the least, a tremendous blow to my wife and me.
Following our final visit to Ann Arbor in the spring of 2005, the Cochlear implant team told us that there was nothing further that anyone could do. At this point, the team turned up Hunter’s implant as much as possible and adjusted everything they could. We were going to try it for some time and see what it could do. The very next day after we got home, I put Hunter’s implant on him and turned it on. Hunter instantly dropped to the floor and screamed in pain. The look on his face at that moment was just heart breaking to me. We tried the implant on him two other times within a month and each time the same effect took place. I have now put the implant away so that it can no longer be used.
Hunter “tried” American Sign Language ASL) for about six months and we had several wonderful people try and train Hunter and ourselves in the use of ASL. They were professional speech therapists and so on. We saw no benefit at all from him when using ASL alone. Please do not misunderstand me when I say that ASL is not bad or anything, it just did not work for us and it was much harder to use and learn. Then, after talking to the cochlear implant team in Ann Arbor, they suggested using Cued Speech. We looked it over and read everything we could find on the Internet. My wife and I immediately switched to Cued Speech full time and quit using ASL completely. Within three months, we saw great progress as far as his willingness to learn, his frustration level dropped, and his communication level improved by a huge amount. Hunter’s transliterator’s name is Paula and she is just fantastic with Hunter. Paula is a down-to-earth wonderful lady in all respects that has a huge heart. We could not have asked for a better person to be with Hunter and help him along with us. Paula has been training and practicing for almost three years now in every single aspect of Cued Speech and how to utilize it with Hunter. Paula will hopefully be with Hunter for quite some time to come.
Last year in mainstream kindergarten, he was the only student in his class that could read and write his full name. At this point in Hunter’s young life, we would be lost if it were not for Cued Speech. He now knows over 300 words using Cued Speech and his speech is now up to about twenty words. He says apple and pepper as plain as day. One of the first things that I continually tell people when they ask me about Cued Speech is just how easy it was to learn and just how easy it is to use. School is the highlight of Hunter’s day, except for maybe eating and sleeping. He rides a bus to and from school each and every day and loves being involved with things that the other kids are doing.
Hunter is starting to settle down and understand why he is in school and why he needs to communicate while using Cued Speech. His Cued Speech training is going quite well and he understands much more then he is letting on. Hunter will cue to us when he needs to cue to us and has, for the most part, quit signing all together. Hunter continues to receive speech therapy, utilizing cued speech, on a weekly basis. He will continue to need speech therapy for many years, even after he starts to talk. We have noticed that he is mumbling and being much more vocal then he even has since beginning utilizing Cued Speech.
One day Hunter and I were sitting quietly sharing a snowy day at our secluded camp by ourselves when Hunter stopped what he had been doing, looked up at me and gently cued, “more hot apple juice please.” This, being basically his first full sentence that I knew of, set me right back in my seat. I cued back to him, “What did you say?” And again he cued, “more hot apple juice please, Daddy.” I gave I gave him a big hug and cued “Yes” back to him. I smiled thinking about that moment for the rest of the day. After utilizing Cued Speech for more than three years now and seeing what Cued Speech is capable of, this is the only form of communication that we could expect Hunter to use except for normal hearing and speech. Hunter has a long way to go in his life, as do the rest of his family, but someday he will make us all proud of all of his accomplishments.