Misako and I were blessed with the birth of our first child, Anita, in June 1999. We were proud parents of our “bundle of joy” and everything about our new baby seemed perfectly normal. It was not until Anita’s six-monthly check-up at the Strathfield Early Childhood Centre, actually in January 2000, that the first inkling of a hearing problem was detected. We were referred from there to the Five Dock Early Childhood Centre because they apparently had better hearing test equipment. As this testing was still inconclusive, we were referred to Australian Hearing and went to our first appointment at their city office in April 2000. On arrival, Anita fell asleep so the appointment was rescheduled to a month later. This became an eventful occasion as Anita chewed and dribbled red chalk in the waiting room play area, was diagnosed as having a hearing problem, had moulds fitted, and cut her lip on a pen top. Misako and I received a copy of the Australian Hearing reference book “Choices”, and were informed that we all may need to learn how to sign, or else consider the possibility of a cochlear implant for Anita. I knew very little about this technology although ironically I recall seeing billboard advertising of Cochlear over Parramatta Road during our return visits from pre-natal classes at King George V Hospital during part of Misako’s pregnancy with Anita.
We were referred to the Sydney Cochlear Implant Centre (SCIC) but had to wait almost two months to June 2000 for an appointment with the eminent specialist, Prof. Bill Gibson, because he was overseas. The following day after this appointment was our third visit to Australian Hearing and the next day a visit to Burwood Public School to find out about early intervention and education options from the Assistant Principal (Itinerant Hearing Support). At this latter meeting, the terminology that Anita was “profoundly deaf” was first used. I remember wondering what this meant - eg, what was worse – profound or severe deafness? Anita was fitted with hearing aids at her fourth Australian Hearing appointment in July 2000, but it was a full year later before her cochlear implant operation. To begin with, the SCIC protocol at the time required clients to wear hearing aids for at least six months before commencing “candidacy evaluation” for an implant.
From the options presented for early intervention, we eventually made contact with the Catholic Centre for Hearing Impaired Children (CCHIC) in Strathfield due to its proximity to our home that at the time was also in Strathfield. The CCHIC Director visited our home and expressed that it was “fortunate Anita is profoundly deaf rather than severely deaf because she will be a clear candidate for a cochlear implant”. The next day Misako and Anita attended the regular Wednesday morning playgroup at CCHIC for the first time - and we have continued to attend the playground and other activities of CCHIC to this day, now with our two younger (hearing) children.
In August 2000, Anita went to the New Children’s Hospital in Westmead for an ECOG (electrocochleography) examination under general anaesthetic. Through this procedure, Prof. Birman was able to confirm conclusively that Anita was indeed profoundly deaf. Prior to this scientific proof, I was not entirely convinced of the extent of Anita’s hearing impairment, believing that the puppet tests used to assess hearing perception at Australian Hearing were a fallible testing method. Also from August 2000 until Anita began nursery school, an itinerant teacher from CCHIC visited our home for two one-hour sessions each week, modelling the techniques we could use with Anita and providing wonderful support.
The cochlear implant candidacy evaluation eventually began in February 2001 and required weekly appointments over a twelve-week period. I remember querying the purpose of the evaluation – was it to ascertain if Anita was really deaf or what? Because Misako is from Japan and had only limited English at the time, a translator was arranged for each appointment. As the evaluation process progressed it was suggested that the appointments should be held less frequently because by now Anita was in the habit of removing her hearing aids frequently (five times in as many minutes in one videoed session at SCIC!) This was considered a contra-indicator to the suitability of Anita as a cochlear implant recipient - the apparent logic being that she might do the same thing with an implant. I remember being highly stressed, confused, frustrated and angry at this stage. Fortunately the CCHIC Director at the time was equally concerned, and advocated directly to SCIC that the implant operation should proceed without further delay. I also followed the advice of a parent who had implanted children that I should “tell them what they want to hear”, so I informed SCIC that Anita was wearing her hearing aids consistently, although this wasn’t the case. Another mitigating factor was that Misako was pregnant with our second child due in October 2001. So the implant operation was ultimately re-scheduled back from September to July 2001, soon after Anita’s second birthday.
Anita had the required MRI scan at Westmead in May 2001. Because this was an afternoon appointment, she had to fast all morning. The anaesthetist was an hour late, so I remember being in the waiting room with a hysterical child who was no doubt wondering why her (highly stressed) parents wouldn’t feed her. I was at breaking point, considering if it was really worth this trauma to get an implant. Finally the implant operation took place at Westmead in August 2001. We were very impressed with Prof. Gibson as the surgeon, and the great support of the SCIC Family Counsellor and the CCHIC Director who both visited us at the hospital. The switch-on three weeks later was a magic moment that as the saying goes “didn’t leave a dry eye in the house”. Fortunately my parents could visit from Adelaide to witness this transformative, even spiritual experience that left us in awe of the genius of this life-changing technology. We have a delightful video recording of the occasion that is compelling viewing.
Weekly post-implant habilitation sessions soon commenced at SCIC and continued for a year to July 2002. Anita then went to a local day-care centre for six months for two days a week, before commencing in the nursery class for hearing impaired children at Penshurst Public School in January 2003, aged 3 ½. Over the next two years I opted to drive Anita to school each day from our new home in Croydon Park – an hour or more round trip including contact time in the class. (Fortunately she was driven home in the transport system provided for support class students from Week 3). Anita had a highly dedicated teacher and a good feature of his program was an hour session each week by this teacher with the parents and their child/ren. However over time it became evident that Anita’s language development was quite slow and we discussed the possibility of introducing visual cues. (Fortunately I have perceived a distinct mellowing over time of the previous hard line discouragement of the possible use of signing, lip-reading and other cues by cochlear implant recipients so that the “less successful” can be freed to explore this option without prejudice).
In seeking a primary school option for Anita, I took her for an assessment at Garfield Barwick School at North Parramatta in May 2004. The Principal immediately advised that she was not a suitable candidate for the school and we subsequently received a written report recommending that Anita would be better suited to a hearing support class in a regular school. I remember feeling quite humiliated that a school specialising in deaf children wouldn’t accept my deaf child! Of course there was a sound reason for their decision, because this school requires progressive integration into a local independent school. Now with few other viable options, it was clear that Anita should attend a hearing support class at the relatively local Burwood Public School. Luckily the class and teachers really impressed us when we visited there.
So Anita began in one of two hearing support classes at Burwood Public School in February 2005. By circumstance, I became the school’s P&C Association President in March 2005. The incumbent Principal, who was already on bereavement leave at the time of the AGM, decided to resign during the Term 1 holidays. A Relieving Principal began in Term 2, with no fixed idea when he might be moved on, although eventually he stayed to the end of the year. In this unsettled environment, the surprise news came during Term 4 that one of the two hearing support classes might be closed by the Department of Education & Training (DET) - despite two or more hearing support classes having been at the school for over thirty years. The support class teachers and I were incensed that there had been no consultation with themselves and the parents about this decision. However, the teachers were powerless to express their concerns without jeopardising their careers, so it was incumbent on me to be the voice of the parents and the teachers. Of course I raised the issue with the school community through the P&C Association, and with the Area Office. The Relieving Principal was actually on a Special Education committee, and he was highly supportive in trying to find ways to address the issue and to seek solutions.
Ultimately there was a meeting of the Area’s School Education Director, the Regional Coordinator for Disability Programs, the Relieving Principal, the Assistant Principal (Support Unit) and myself on 19 December 2005. At the meeting it became clear that the Department’s decision was not negotiable. The next day I was on the interview panel to select a new Principal for the school, and the following day was the last of the school year…so it was an intense finish to 2005.
On the first staff day of Term 1 2006, I was informed that the new Principal would need to ask one of the two hearing support class teachers to seek a nominated transfer. As events unfolded, Anita’s teacher in 2005 was able to stay on at the school – as a regular Year 6 class teacher – after thirty years of experience teaching the hearing impaired. So Anita is now in a composite class of up to 9 hearing impaired children that can span the primary age spectrum (Kindergarten to Year 6) whereas last year she was in a class of 4 hearing impaired children in the lower primary age spectrum (Kindergarten to Year 2). Fortunately her current class teacher, who taught the older primary students with hearing impairment in previous years, also has thirty years of experience teaching the hearing impaired.
I swung into campaign mode. The embattled new Principal counselled me not to go to the media, and I assured him this was not my intention. Instead I wrote to the South Western Sydney Regional Director and to my local Member of Parliament (who referred my concerns to the Minister for Education), plus other key stakeholders. I did not get a response from the Regional Director until early April, but I got a response from my local member within an hour! Frustrated by the delayed and inadequate responses from DET, I wrote to the NSW Ombudsman’s office in March expressing my concerns about the lack of consultation, the potential compromise of learning outcomes by creating such a broad composite class, and the lack of certainty about the future of the remaining hearing support class.
It was particularly infuriating to me that the DET website, under Disability Programs, stated that…“…Early next term (Term 4 of 2005) regional staff will consult with parents, principals and teachers to determine if there is a need to change the arrangement of these (special) classes…This process will only take place after local consultation to make sure individual needs and circumstances are fully considered…”
and yet the DET had not consulted at all with parents and teachers as key stakeholders in this instance.
Ironically, I also got a delayed and inadequate response from the Ombudsman’s office - I did not receive a response (beyond an acknowledgement of my correspondence) until July 2006. It was further evident from their reply that the office had only consulted with DET bureaucrats about my concerns and taken these responses at face value. However I believe one good thing in contacting the Ombudsman’s office was that it spurred the DET into action. I received a call from the new Acting Regional Director’s office during the Term 1 holidays and we could meet early in Term 2 (together with the School Principal and Area School Education Director). At this meeting I received an apology, and a genuine sense that the Acting Regional Director was intent on addressing my concerns to the extent that was reasonably possible.
In the meantime I made a posting to Aussie Deaf Kids about my concerns that resulted in contact with its founder, Ann Porter, and an invitation to the deferred AGM of the Parent Council for Deaf Education (PCDE) in April 2006. Ann further invited me to a meeting of a DET Committee on Hearing Impairment Issues and we also spoke at a Hearing Support Unit Family Night at Penshurst Public School.
Most recently I have read through the Auditor-General’s Performance Audit on “Educating Primary School Students with Disabilities” (released in September 2006) and have a concern about the Recommendation that DET “…by 2008, change the way special classes are organised from disability type to classes based around the support and educational needs of students…”. I understand the Education Minister intends that specific hearing support classes will continue, but I believe this must be confirmed and monitored.
In conclusion, I am frustrated that delays in the detection of a hearing impairment for my daughter and subsequent circumstantial and procedural delays have meant that Anita, now aged seven, struggles so much with language even after five years of constantly wearing a cochlear implant. (Conversely I am delighted that there is now a SWISH program for early detection of hearing impairment). I am understandably concerned by any actions or inactions that may further compromise Anita’s language development, or that of any hearing-impaired child, hence my heightened concern about the machinations of DET that appear ultimately based on cost-cutting. This is where parent advocacy is so essential to ensure that government and other entities remain sensitive to, inclusive of, and accountable to parents as key stakeholders.
I look forward to continuing to advocate as and if required for my daughter and for hearing impaired children generally. I certainly believe that there is strength in numbers, so if we work collaboratively on issues of concern, eg through the Parent Council for Deaf Education, then there is more likelihood that we can achieve the outcomes we desire.
Mark Burfield
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My name is Aileen Ryan and I am going to tell you about my daughter, Elysha. Elysha is now eighteen years old, a twin, has Down Syndrome and is hearing impaired. When Elysha was born and we were told that she had Down syndrome, one of the pieces of advice we received was to use sign language as she would a speech delay.
As I had already trained in sign language we decided to follow this advice and started signing with the twins at six months. Elysha started signing back in response at eighteen months and her language both verbal and signing came along very quickly after that. At around the same time we had confirmed that Elysha had a moderate/severe hearing loss which was a permanent loss as well as constant glue ear.
Elysha's main form of communication is sign language, augmenting speech which is often very unclear. Between her hearing loss and the Down syndrome she is very hard to understand and sign language actually improves her spoken language unbelievably. Elysha has also done intensive speech therapy throughout her eighteen years. I have to admit I thought that by the time Elysha started school her spoken language would have improved so much that signing would be a thing of the past. But this was not to be and I am so glad that we gave her the option of being able to communicate no matter what. By using both voice and sign language with Elysha we gave her more opportunities to communicate all her needs and desires.
Elysha has done all of her schooling in a hearing unit at a tream school. We did start out not in the hearing unit, but came to realize very quickly that Elysha was really struggling especially when it came to socializing as people did not know enough sign to help her build her skills.
So began the struggle to get her into a hearing unit using sign language. Primary school was St Andrews, Campbelltown and high school was Lurnea high. Both hearing units were using both sign and voice. I had to fight every step of the way to get Elysha into these units as her Down Syndrome was always taken into account first, so she was not automatically eligible for a hearing unit. Once I won the battle of the schools Elysha settled in and in both primary and high school she did extremely well. When she hit high school her signing really improved as she was in a class with both teacher and students, who were deaf so little voice was used. Here Elysha came into her Auslan skills and even now it just blows me away to see her signing so proficiently and her understanding of life is wonderful and she has the most wicked sense of humor ( I hear it is very similar to my own).
Elysha also clearly understands the difference between hearing and deaf who sign and always uses voice with people who use voice. She never struggles to understand the concept and is a great communicator using everything to help her.
Elysha has now joined Nova in a transition to work program. This program has deaf and hearing staff and many can sign with their clients so life is looking good right now. Elysha is now learning to use a voice output app, proloquo2go, on the iPod touch so when with non signers she can still communicate.
Elysha enjoyed every one of her school years but I have to say I often felt as though it was a never ending battle. There were always issues. And I can honestly say that they were not issues of behavior, or the teachers not wanting her there. She was very warmly welcomed and the teachers were very proud of her progress. It was always those higher up the chain who seemed to struggle with anything that is out of the norm.
I am very sad to say that those wonderful teachers and classes Elysha attended have been closed down. A year after Elysha left St Andrews the unit there was closed and teachers found other positions. This year will also be the last one for a wonderful and gifted teacher at Lurnea High as politics again swings into action and closes another unit.
Life has certainly been rocky for our family with many tears and also lots of laughter along the way. I have learned to stand up for myself and my family and never accept a no as the only answer. We have helped people see Elysha for herself and what she can do rather than for her disability and what she can't do. We have made many friends along the way and had lots of successes and only a few not so great results.
Elysha goes to dance lessons once a week, does volunteer work at an early intervention service, goes to Nova three days a week and enjoys lots of socialising. She has received a companion dog, Jake, from the guide dog assoc and is getting ready to train with Jake in Pet Therapy. Elysha also makes window clings that we then sell at the markets a few times a year.
One of the other girls on our committee and myself are trying to get a social group going for children with development or physical disabilities and who are also using sign language. We would love to expand our kids lives to include regular get togethers with others also signing. A group that can socialise, have fun getting together, building their signing and social skills. Networking for parents, sign practice. Or just getting together every now and then to chat, share and just be there. If you’re interested in this idea get in touch with one of the committee members, or PCDE.
I look forward to getting lots of articles and suggestions from others out there. Take the time to write as big or small a piece as you want and let us hear from you. Remember we can't change what we don't know about.
Lastly the picture attached to this piece is a beautiful photo taken at my older sons wedding in May, Elysha is dancing with her dad and I think the photo says it all. The love and pride are abundantly clear.
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