My husband and I have two sons. Cory is our eldest and is now 12 years of age. He has a mild to profound bilateral sensorineural hearing loss that we believe was acquired from birth. Bilateral meaning in both ears and sensorineural refers to the damage in the cochlea or auditory nerve. This is a permanent and irreversible loss.
Soon after Cory was born his health deteriorated rapidly. He developed an acute respiratory infection and within hours he was transported to Prince of Wales Intensive Care Unit. He remained there for 3 weeks. For a good part of that time he was hooked up to a life support system, that he was totally dependant upon, with an array of leads, warmers, catheters and every drug that was available was administered. Without exaggeration he looked like the inside of a dashboard. We came very close to loosing him a couple of times but he just scraped through escaping a lung bypass after his lungs collapsed. He has always been a real fighter and it was evident then, that he wasn’t going to give up at any point without a battle.
He recovered and came home, but little did we know this was to set off a chain reaction to a whole host of problems for the next 6 months, at which point another bombshell would be dropped upon us taking us changing our lives forever.
By the time Cory was 6 months old things had begun to settle. He was off medication, his lungs had made an extraordinary recovery and he had been passing all of the usual developmental tests, including the early hearing test.
At this point his clinic sister had noticed on his records that he had been administered an ototoxic drug that can be detrimental to hearing. It was to be discovered much later that although the drugs had been monitored carefully and shouldn’t have damaged his hearing, it was probably the combination of so much oxygen over such a long period and the susceptibility to ototoxic drugs that ultimately lead to his deafness.
We then began testing. Testing, testing and more testing. It was extremely difficult to fight back emotions of grief, anger, guilt and confusion while watching Cory fail at each one. We would put on a bright, happy and positive facade as it was necessary that your child be well, happy, attentive and focused for these long, arduous tests in hot, stuffy, sound proof rooms. Most audiologists did what they could to make them playful and fun, but persuading a toddler to sit behind a desk attentively, keeping him stimulated and motivated for periods of ½ hour or more was exhausting for all.
Dealing with professionals in the field was at first very difficult. I was suddenly faced with having to decipher jargon like visual reinforcement orientation, audiometry, tympanometry, bilateral, sensorineural hearing loss, frequencies, decibels, audiograms and so on. I found myself doing a self-taught crash course on paediatric audiology. Finding information was difficult. People simply didn’t offer it to you. You had to draw it out of them – that’s just the way it was. We spoke to many families and went through many audiologists, specialist and hours spent in waiting rooms lugging around bags of stimulating toys and books to keep our little boy occupied, before we finally found the best. I now have a reputation for my persistence that I’m proud of and respected for.
This was a particularly difficult time for us. My husband and the extended family did not accept his hearing loss and I felt very alone for some time.
With months of glue ear masking a suspected hearing loss, at 18 months of age he was finally diagnosed and hearing aids were fitted. This is considered a very late diagnosis, as early intervention is crucial. At last we could finally begin to communicate. We were one of the lucky ones as Cory accepted the aids well and began to rely on them immediately as this opened up a whole new world for him.
Just after this Cory’s hearing began to deteriorate. He was back in hospital for more invasive testing. The first required sedation and external probes, but was unsuccessful. The second was a cat scan and the third required sedation and an internal probe to his inner ear. The latter was probably the most conclusive but still provided no straight answers. We were to wait years before we could be relaxed about the fact that his hearing probably would not deteriorate any further.
Amidst all of this we were faced with the decision of selecting from an array of educational organizations and communicative methods in order for our child to learn a language with which he could communicate (either oral or sign, if the aids were unsuccessful). You see language acquisition occurs naturally and spontaneously with hearing children through life experiences and simply being around people who talk. For hearing impaired children this is simply not the case. It wasn’t an easy, clear cut decision by any means. It was another long arduous process that we went through. Arranging meetings, researching and deciding between oral communication and signing. If we chose to sign, should it be Signed English or Auslan? If we chose the oral approach, which method? Auditory Verbal, based on developing sophisticated listening skills or Total Communication, a combination of listening, lip reading, Signed English and finger spelling. Those who taught these methods were often biased in their opinion, which made the decision even more difficult. Then, should it be through the Department of Education, St Gabriel’s, the Shepard Centre or the Royal Institute for Deaf and Blind Children. In retrospect, we dived in with eyes closed but we went with our instincts and it turned out to be the best and wisest decision of all.
We chose to go through the Royal Institute for Deaf and Blind Children’s Homestart Program and follow the Auditory Verbal method.
We started the program immediately with enthusiasm and dedication. With our limited understanding we at least knew that those factors had to be present if any program was to work successfully. We had a teacher, who specialised in deaf education visit our home once a week – the most dynamic, creative and capable teacher I’ve ever had the privilege of knowing and working with. Cory’s language developed slowly through “play”. To him it appeared very natural, exciting and fun. However, this took great planning, goal setting, evaluating, monitoring and saturating him with lots and lots of quality, meaningful language from the time he woke to the time he went to bed.
This became a steep learning curve for me. This is where I learned to love to teach (even if it was just my children) and I developed a real thirst for knowledge in both fields of audiology and language development. I had wonderful support all around me. The staff at the Institute grabbed hold of my enthusiasm, which in turn gave me some feeling of control and empowerment (neither of which I had felt for a long time) and we did wonderful things together.
Cory’s language acquisition, self esteem, concentration and personality flourished. Family finally came to accept the fact that his loss was real and permanent and we began to work as a team. Cory slowly began to pass milestone upon milestone and the hard work began to pay off.
We overcame our fear of the likelihood of having another sick baby and decided to have one more child, which was what we had always wanted. During the pregnancy I met a mother with 3 children, 1 hearing and 2 with a hearing loss. On having her third child, she discovered that the hearing loss was genetic. I had not been aware of this genetic disorder and found myself once again visiting genetic specialists and researching in libraries, as the cause of Cory’s deafness had only been an assumption. Once again, after lots of assessing we were left with conflicting reports and no real answers. We waited for our second child to be born. We came across a doctor in Chatswood who had a wonderful new machine that pretty accurately measured babies for hearing loss. He was born and the tests showed he had full hearing.
Cory started at a local preschool soon after. Before long it became evident that they could not meet his needs simply because they lacked the expertise required. We made yet another heart rendering decision to move him to a preschool set up by the Royal Institute for Deaf and Blind children at Glenmore Park, Penrith, which would require an enormous amount of travelling. This proved to be another successful move. The most brilliant preschool I have ever come across. Glenmore Park Early Childhood Centre together with the Royal Institute for Deaf and Blind Children held a philosophy, attitude, program and united team that was second to none; a reverse integration program with a primary focus on families. Where parents are informed, consulted and involved in all aspects of the program and where staff work collaboratively with parents to ensure the best possible education for the children. Where the grounds were landscaped and the centre set up to provide an exciting and interesting learning environment for the children; a role model for any educational organization, at any level, to follow.
Soon after, Cory began to develop a moderate to severe stutter. This had nothing to do with his hearing loss nor did it appear genetic. It was simply bad luck.
Cory had just begun to listen and speak when this physical disorder crept in to hold him back once again.
We found an excellent speech therapist that had been recently involved in researching “a break through” therapy to successfully manage this disorder. So for the next 18 months we travelled for 1 hour to stuttering therapy each week, 4 x 45min trips a day, 3 days a week to preschool, welcomed our Homestart teacher into our home once a week and attempted to do all the normal things that parents do with their children, like swimming, playgroup and family picnics. Between that, I was left with a program from each of the 3 teachers that had to be applied each day as well as graph, tape, monitor, evaluate, set goals and much more. Lessons and therapy took a lot of engineering to appear like natural, spontaneous and fun play. He never knew the difference and loved it. Cory has always had a thirst for knowledge and vital interest in everything around him, which made things easier.
Cory continued to blossom. The stuttering had finally stopped. He had developed confidence, assertiveness, sophisticated listening skills, articulation, the ability to manage his FM and aids independently and was ahead academically, all before the age of 5. He was totally groomed for big school, which was our next decision. I visited many schools. Again it felt like a stab in the dark and again it turned out to be the right choice. I selected a local Public school for a number of reasons. I liked the feel of the school, the children and teachers within it. It was vital for Cory to have good role models and it was evident that there were many there. Attached to the school was a hearing support unit and a number of students with hearing impairment already mainstreamed. This was ideal as there were children there that he could identify with. I persuaded the relevant staff that Cory was ready to be integrated in a mainstream kindergarten class. They were soon convinced that this was the right move as he settled in well and made great progress.
However, I was completely unprepared for big school. For all this time I had been involved and in total control of every aspect of Cory’s learning and suddenly I felt like it had been all ripped away. I knew that I would take a more formal role now by placing my child’s education in a strangers hands, with very little communication between us, was incredibly difficult to accept and it took many years before I felt relaxed about it.
Cory progressed extraordinary well through primary, participating in everything from public speaking to drama. Over time he developed a wide circle of friends, one of which he has maintained a relationship with since Year 2 and still holds to date. However, this progress did not go unassisted. His itinerant teachers tirelessly supported him through the years and Cory willingly put in many hours of work, at home, above and beyond most children his age. At times, building parent – teacher relations seemed agonisingly slow. I guess because people feel threatened by something they’re not familiar with. Most found that little change was needed and they relaxed into it.
Amidst this our youngest son, after much investigation, was diagnosed with Attention Deficit Disorder and for sometime the focus shifted to him. Cory found this very difficult at first. However, despite well-documented evidence of the impact children with disabilities have on their siblings, both have learnt to adjust and compromise as well as can be expected. He is now doing exceeding well but there is still a lot of work ahead.
Before we knew it the decision of a high school was before us. I guess the decision was made a little easier this time, as it was evident that Cory would need a school that would provide a caring yet controlled environment. With the experience and advice of a dear friend, with children, one hearing impaired, already at the school, a local Anglican College seemed a natural choice. It is now apparent we have made the right move. Both boys are now attending this school. Both continually express their contentment in being there and their confidence continues to flourish.
Cory continues to do extremely well today with the wonderful support of his itinerant teacher and class teachers.
At most, Cory struggles in noisy situations, at sports carnivals, on excursions, in the playground and watching TV’s and cinemas without captions. He also has difficulty sometimes with jokes and innuendo. He uses strategies to overcome these obstacles, however, unknowingly to most and to him, he still misses out on a lot.
At most, I struggle with the unreceptivity of some people in relation to hearing loss, despite my sensitivity to their lack of understanding. However, awareness is growing slowly and this is encouraging.
Cory has had to overcome enormous obstacles in his short life and his achievements are many. With years of hard work his speech is now so articulate and his academic performance is so high that it is easy to forget his degree of loss and the assistance that is still required to keep him there. Over the years, he has participated well in softball, swimming, soccer, scouts, tennis and, to my astonishment, guitar. Cory has settled into high school amazingly well. He loves it here and continually speaks highly of his teachers and the school. Cory is a fun loving, sensitive and caring young boy who sees his handicap as an inconvenience rather than a disability. His conscientious and motivated nature is one to be admired.
The biggest handicap these children face are the low goals we set for them. They can achieve anything their hearts desire but only with the tireless support of their families and the expertise of dedicated professionals. |
