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Children’s outcomes
Stories written by parents about their children who are challenged by hearing impairment and other special needs.
Some of these children have hearing aids, while others have Cochlear Implants.
Our First Child Tells Her Story
- Matilda (Cochlear Implant)
Matilda
Imagine being deaf for a day. You know how it is when someone presses the mute button on the TV, but now instead imagine they pressed it on your life. Imagine waking up and not hearing anything, not even your alarm clock or the garbage trucks at 6 am!
Imagine being able to turn off your nagging sisters or brothers, imagine even being able to switch of Mrs Bradburn. Not that I ever would. Being deaf is like living in only part of the world but I don’t have to live in only part of the world because I Cochlear Implant which lets me hear. The Cochlear Implant is also called the bionic ear as it works much better for people like me than a hearing aid ever would.
Beware I can also lip read so don’t be telling secrets on the other side the play ground!!! When I had my Cochlear Implant operation, was a nine month old baby. At the time this made me one of the youngest people in the world to have an implant. What my Cochlear does is make me hear really well when there is just one person talking to me, but in group conversations it sounds like a hundred voices at once and feels over whelming, and sometimes I feel left out. I don’t like to feel as it hurts my feelings.
I am not asking for sympathy instead just a bit of consideration. But at the end of the day just like being tall being deaf is part of what makes me ME!!!
Autism
Autism is a complex developmental disability that characteristically emerges during the first three years of life and is categorized by difficulties in social interaction, impaired communication, limited and repetitive behaviours and interests and sensory hypersensitivity.
Ivan
Twelve years ago our first child, Ivan, was born, a beautiful, healthy baby boy. Or so it seemed at the time, as for the first year all smiles, giggles and movements were perfectly age-appropriate. Eventually though we began to notice that Ivan’s responses were somewhat random and incoherent, and, keeping the story short, at the age of 18 months Ivan was diagnosed with mild to moderate hearing loss. The hearing-loss quickly deteriorated and by the age of two Ivan had no hearing left and thus became a valid candidate for a Cochlear Implant. Unfortunately it was only the beginning of a hard journey. Around the same age Ivan began to develop a range of odd behaviours and, even though he was hearing well within the speech range with his implant, neither expressive nor receptive speech was coming along as expected, to our dismay. It soon became obvious even to a non-specialist that Ivan had a classic text-book case of Autism spectrum disorder. The diagnosis was soon confirmed.
We now had to deal with the two disabilities that overlapped so well that it was very hard to tell which one had a worse effect on Ivan’s development. But luckily for us throughout those early years we have met with some very dedicated people who have given us support and hope. With the combined efforts of The Shepherd Centre, SCIC, Aspect, and later RIDBC Matilda Rose Centre, we began to make little steps forward.
So, where are we now? Ivan’s about to start high school next year. Both of his diagnoses have made a profound impact on his learning, and Ivan’s IQ falls within moderate intellectual delay range, although the behaviours are much easier to deal with as his communication is improving every day. His speech at present is still delayed, but he’s making a great use of what he has - including fine use of swear words (which he seem to have picked up without that constant repetition that we needed to provide for a lot of other words in his vocabulary, surprise-surprise!). He learned to say "thank you" in Russian and shows off amongst the relatives. The other day he came home and told me that as he was riding a bike outside, he came across some firemen. He then initiated a conversation with them to find out the cause of the flood that the firemen were dealing with I won’t exaggerate if I say that Ivan’s vocabulary is expanding every day before our very eyes! Our journey continues, but even at this stage it’s obvious that Ivan already has enough speech to deal with a lot of everyday situations and he’s very keen to take his skills further.
Peter
Coming soon
Cerebral Palsy
Cerebral Palsy (CP) is a physical impairment that impacts movement, muscle tone and motor skills (the capacity to move in a coordinated and purposeful way).
The three types of CP are:
- Spastic CP – causes stiffness and movement impediment
- Athetoid CP – results in involuntary and impulsive movements
- Ataxic CP – produce a unstable sense of balance and depth perception
Dougie
Coming soon
Olivia
Coming soon
Development Delay
Developmental Delay occurs when a child does not achieve certain skills by a predicted age or develops them more slowly than other children of the same age group.
The five main areas of child development are; cognitive, speech and language, fine and gross motor skills, social and emotional skills. When more than one area of growth is affected, the term Global Development Delay may be used.
Lola
Coming soon
Matthew
Coming soon
Dyspraxia
Dyspraxia is a difficulty with thinking, planning and carrying out sensory / motor tasks. It is as a consequence of messages not being correctly or fully transmitted from the brain, so that aperson knows what they want their body to do but can't get their body to do it. Dyspraxia can impinge on any or all areas of development – emotional, intellectual, physical, language, social and sensory and may encumber a person’s normal process of learning.
Nicholas
Coming soon
Julian
Coming soon
Case studies
Each of our children has hearing loss and additional special needs.
Hearing loss often affects other skills and abilities: hearing loss in children can affect attachment/social connection and delay preverbal skills such as eye contact, turn taking and symbolic play. It can also delay speech development, and receptive and expressive language development.
Many of our children choose to address the hearing loss with Cochlear Implants.
Corey
Corey is a six year old boy who has a younger sister Ruby. Since her birth Ruby has attended most of Corey’s therapy sessions.
Corey’s birth was premature resulting in collapsed lungs and jaundice.
His diagnoses were:
- At 10 months, Cerebral Palsy;
- at 12 months, Bilateral Profound Hearing Loss and Cortical Blindness; and
- at 3 .5 years, Auditory Dysynchrony and Neuropathy.
The Spastic Centre managed Corey’s physical needs, while The Royal Blind Society supported his visual needs and Australian Hearing managed the fitting and ongoing support required for Corey’s hearing aids.
The Shepherd Centre provided Corey and his family with his initial Early Intervention therapy related to his hearing impairment.
The Sydney Cochlear Implant Centre managed his Cochlear Implantation and ongoing audiological services.
Despite the fact that Corey was receiving Early Intervention services from The Shepherd Centre he did not achieve hearing aid compliance. This inhibited his ability to respond to Auditory Verbal Therapy and develop communication and language.
The Shepherd Centre referred Corey and his family to RIDBC Matilda Rose Centre in May 2005 and he was enrolled when he was 2.5 years old.
At RIDBC Matilda Rose Centre Corey and his family received an Individalised program based on the COMBINE Methodology including the following:
- Cochlear Implant candidacy evaluation
- Ongoing audiological services for his Cochlear Implant
- individual and group sessions involving physiotherapy, occupational therapy, speech and language pathology, early childhood education
- parent support and education
- transition to pre-school/school support
At 3.5 years old Corey received his Cochlear Implant.
Due to tactile and auditory defensive behaviours Corey continued not to tolerate either his hearing aid or Cochlear Implant. A sensory integration program was implemented to target these issues. He responded well and an adapted Auditory Verbal Therapy program was introduced. Corey slowly developed hearing aid / Cochlear compliance and functional listening.
Corey has developed a sound basic receptive vocabulary, can follow auditory instructions, enjoy simple stories, songs and rhymes but despite the development of pre-lingual skills, intensive oro motor therapy, modeling of spoken language he has not developed speech.
A Picture Exchange System (PECS) was introduced to Corey for expressive language. As PECS is a visual system and AVT is auditory, adaptations had to be made to ensure that Corey’s auditory skills were not compromised and could continue to develop. This involved providing Corey with a structured listening program without visual cues on a daily basis in addition to PECS training.
A transition to school program was developed for Corey when he was ready to enroll in St Gabriel’s school for Hearing Impaired children. RIDBC Matilda Rose Centre have provided ongoing individual weekly speech and language sessions at his school to ensure that he has a smooth transition. The school staff have worked in collaboration with the RIDBC Matilda Rose Centre team.
Corey now hears across the speech range, walks, climbs and runs independently. He has become a communicative young boy who enjoys family and school life. Corey listens well and comprehends everyday conversations and school instructions and he uses a picture communication system to express his thoughts and needs. Corey enjoys the company of his school peers and has learned to read, spell and is beginning to do early numeracy.
Corey is currently being assessed for higher level augmentitive systems of communication to meet his expanding social and academic needs.
Hayden
Hayden was born full term on the 28th September 2009 but he did require oxygen. He is now an 8 year old boy who has a younger brother Jared.
His diagnoses were:
- at 3 weeks, bilateral severe to profound hearing loss;
- at 3 months, physical disability;
- at 12 months, Global Developmental Delay;
- at 4 years: Oral and Limb Dyspraxia; and
- at 7 years: Cerebral Palsy
Australian Hearing managed the fitting and ongoing support Hayden required for his hearing aid/s and his F.M. system.
The Royal Institute for Deaf and Blind Children provided Hayden and his family with Early Intervention services related to his hearing impairment.
Australian Hearing referred Hayden and his family to RIDBC Matilda Rose Centre in October 2002 when he was 26 months old and he was enrolled at RIDBC Matilda Rose Centre in October 2003.
At RIDBC Matilda Rose Centre Hayden and his family received an Individalised Program based on the COMBINE Methodology including the following:
- Cochlear Implant candidacy evaluation
- Ongoing audiological services for his Cochlear Implant
- individual and group sessions involving physiotherapy, occupational therapy, speech and language pathology, early childhood education
- parent support and education
- transition to pre-school/school support
- ongoing individual sessions to address speech, language, play and movement
Hayden received his Cochlear Implant just before his third birthday. His switch-on and ongoing MapPing was provided by The Sydney Cochlear Implant Centre but took place at RIDBC Matilda Rose Centre with Hayden’s parents and RIDBC Matilda Rose Centre case-manager.
Hayden had been introduced to signing but due to his motor planning difficulties this was difficult for him to develop. Following his Cochlear Implant Hayden learned to integrate listening into all of his waking hours. This was accomplished through intensive Auditory Verbal Therapy with his parents, who ensured that all of his therapy goals and objectives were carried over into the home setting.
Hayden’s mother worked in true partnership and felt comfortable in reporting what worked and what didn’t and how she was able to change therapy ideas to meet the family environment.
Although Hayden’s receptive language developed well he was very delayed in terms of expressive language due to his oro motor planning issues. He required an individualized program to meet his needs. The Nuffield Program was adapted to suit the Auditory Verbal Program and his speech pathologist from RIDBC was also involved. Over time this program promoted feeding and spoken language.
Hayden’s physical needs made it very difficult for him to develop play and he required a program that targeted motor planning and gross/fine motor skills to facilitate the his ability to sit, stand, roll, crawl, walk, jump, carry objects and explore his environment and manipulate toys and objects.
At RIDBC Matilda Rose Centre Hayden’s brother Jared was included in both individual sessions and group sessions until he was ready for pre-school. This was invaluable as Jared was a great language model and it enhanced their relationship. At Hayden’s local pre-school the staff made sure that he was included in all aspects of the pre-school community. Staff from RIDBC and RIDBC Matilda Rose Centre worked collaboratively with the pre-school staff to make sure Hayden’s audition, communication and physical needs were met.
Transition to school was well planned with the receiving school, RIDBC Matilda Rose Centre and the Hearing Support teacher for the school. Hayden’s parents selected a special school that had a two year Start Right Program. The Start Right Program is designed to prepare special needs children for inclusion in regular school. Hayden did well in The Start Right Program. He also continued with an after school program at RIDBC Matilda Rose Centre. The RIDBC Matilda Rose Centre program was designed to develop higher level listening, language, speech, literacy and numeracy skills and his motor development including play.
Hayden was diagnosed as having a global developmental delay and although formal assessments suggest that he still has a mild developmental delay his reading, spelling and maths skills are developing well. Hayden attends his regular local primary school and he is able to read at a grade one level with fluency and comprehension. Hayden is now enjoying play and has had the confidence to speak at school assembly.
Zoë
Zoë is a 10 year old girl who has a younger sister Phobe. Zoë was born at 29 weeks and presented with low birth weight, hyaline, membrane disease, jaundice, apnoea & bradycardia, patent ductus arteriosus, suspected sepsis, chronic lung disease. She remained in intensive care until she was discharged at 60 days.
Her diagnoses were:
- At 11 months: Athetoid Cerebral Palsy;
- at 22 months: bilateral profound hearing loss; and
- at 30 months: Myopia.
The Spastic Centre managed Zoë’s Cerebral Palsy, while Australian Hearing managed the fitting and ongoing support Zoë required for hearing aids and her F.M. system.
Royal Institute for Deaf and Blind Children provided Zoë and her family with Early Intervention services related to her hearing impairment. Australian Hearing referred Zoë and her family to RIDBC Matilda Rose Centre in November 2002 when she was 22 months old, and she was enrolled at RIDBC Matilda Rose Centre in May 2003.
At RIDBC Matilda Rose Centre Zoë and her family received an Individalised Program based on the COMBINE Methodology including the following:
- Cochlear Implant candidacy evaluation
- Ongoing audiological services for his Cochlear Implant
- individual and group sessions involving physiotherapy, occupational therapy, speech and language pathology, early childhood education
- parent support and education
- transition to pre-school/school support
- individual sessions to assist with visual tracking to facilitate reading and speech work to assist voice quality and fluency
At 2 years 8 months Zoë received a Cochlear Implant. Her switch-on and ongoing mapPing was provided by The Sydney Cochlear Implant Centre but took place at RIDBC Matilda Rose Centre with Zoë’s parents and RIDBC Matilda Rose Centre case-manager.
Zoë learned to integrate listening into all of her waking hours through intensive Auditory Verbal Therapy. Her parents embraced all areas of her therapies and ensured that the goals and objectives were carried over into the home setting.
Zoë required intensive speech therapy and physiotherapy to maximize balance, head control and posture. This promoted breath control and improve her voice quality. Zoë’s voice quality and fluency improved dramatically after she learned to walk at the age of 7 years. Until this time her voice quality was breathy and weak and now Zoë’s speech is within normal limits.
To maximize exploration of her environment, manipulation of objects, toys, books, art materials, blocks, lego, puzzles etc Zoë’s physiotherapy and occupational therapy goals were integrated into every individual and group session and carried over into home life.
Zoë’s physical needs delayed entry to pre-school and she required a long transition period and ongoing support from RIDBC Matilda Rose Centre and the special needs teacher at the pre-school to ensure that Zoë and her family were included in all aspects of the pre-school community. This often required pre-teaching of skills at RIDBC Matilda Rose Centre.
The use of experience books and time invested to teach Zoë the skills required to develop play was important for Zoë’s social emotional, language and cognitive development. Her sister Phoebe attended sessions on a weekly basis to promote interaction and play supported by the development of conversation.
Mainstream school entry was delayed by one year. An intensive transition to school program was developed to adapt the school environment to suit Zoë’s physical and auditory needs. Zoë was taught orientation skills, key board and computer skills and literacy and numeracy concepts/skills. Activities were provided at pre-school, home and at RIDBC Matilda Rose Centre to ensure Zoë had time and experiences to develop positive self esteem and social interaction skills. Prior to school entry Zoë and her family were embraced by the school community and she had experienced all aspects of school life.
Zoe has now completed 4 years at school. She is an above average student in all academic subjects. Zoë won the University of NSW International Competitions and Assessments for schools prize for science receiving a distinction and scored in bands 5 & 6 in her National Assessment Program – Literacy and Numeracy (NAPLAN)
Reading score for the Neale Test: age at time of test 8 years 3 months
Accuracy: 10 years 7 months (stanine 7)
Comprehension: 11 years 1 month (stanine 8)