Kids on the coast

Emily Pearl Kingsley is the mother of a child with a disability. She compares her pregnancy with the excitement of planning a dream trip of a lifetime to Italy. Somehow, however, she ended up on the wrong plane and landed in Holland. She says if you spend too long mourning what might have been, you may miss seeing the different, but equally wonderful and exciting place in which you landed.

The human spirit is resilient. It does not take long for most parents to put aside the grief and worry that follows diagnosis, and come to grips with difficult practical and philosophical decisions about their child’s future. One parent told the Hear and Say Handbook, “We felt an indescribable sadness for our daughter for all the things in life that we thought she would miss, then an enormous determination to make sure she did not miss anything.”

The challenges can be daunting. Demands on parents’ time, patience, finances and emotions can take their toll. The rewards of such determination are seen in the joy and pride families experience when they see their visually or hearing impaired child develop hard-won skills others take for granted.

Hearing screening for newborns

The earlier a child with a sensory impairment is identified the earlier he or she can access treatment and early intervention services. These optimise the child’s chances of engaging fully in mainstream education, in employment of choice and in a fulfilling social life.

The Queensland Healthy Hearing Program has been offering free newborn hearing screening to all babies born in Queensland hospitals since 2004. If the result is of concern, the baby is referred to Australian Hearing for further testing. If a hearing loss is identified the audiologist will discuss management of the hearing loss with the parents. Australian Hearing will also provide a copy of Choices, a booklet that provides a mine of information about early intervention programs, services and practical advice on communicating. The Healthy Hearing Program has been able to test 98% of babies in recent years and this has meant that early intervention programs to develop communication skills can begin much earlier. Undetected hearing loss can profoundly affect speech, language, cognition, social and emotional development.

Early intervention is the key to helping your child communicate and socialise

Your general practitioner and your child’s paediatrician can provide support and advice about local services. It can be helpful to connect with other parents of hearing or vision impaired children through an organised support group or via your child’s early intervention centre or school.

Ideally, early intervention should begin soon after your child has been diagnosed with a sensory loss. The child benefits from the early stimulation and parents benefit from working with early intervention professionals who will help you support your child.

Support for the child with a hearing impairment

The Hear and Say Centre in Nambour runs an innovative Auditory-Verbal Therapy program teaching deaf children to hear, listen and speak. Hear and Say speech pathologist Roxanne Innes says earlier screening of newborns, cochlear implants and advanced hearing aid technology (combined with Auditory-Verbal Therapy for a profoundly deaf child) can result in that child, at two years, having speech levels above his peers.

Buderim mother Kristy Murphy and her three-year-old daughter Sloane are clients of the Hear and Say Centre. Sloane was born in Sydney after a normal pregnancy and birth. The hospital’s hearing screen for newborns detected a possible hearing loss and Sloane was retested a few days later – with the same results. A full audiological test two weeks later showed a severe to profound loss in both ears. “It was just devastating”, Kristy says. With no family history of deafness, Sloane’s parents found themselves entering a world that was “all new and strange”.

Sloane was fitted with hearing aids in both ears at four weeks and started Auditory-Verbal Therapy in Sydney at two months of age. The family moved to the Sunshine Coast when Sloane was 18 months and she started at Hear and Say immediately. Sloane’s hearing was reassessed and a cochlear implant was recommended. She now has both an implant and a hearing aid. Sloane attends the Centre for individual therapy and for a monthly playgroup.

Kristy backs up the therapy with intensive language enrichment at home. “The positive environment of the Centre and the contact with other parents going through the same thing has been our biggest source of support,” Kristy says. She feels very confident about Sloane’s future having seen the accomplishments of older deaf children who have had cochlear implants and intensive Auditory-Verbal Therapy.

Communication for hearing impaired kids

Oral – involving speech, listening and lip-reading. The oral method uses lip-reading with the assistance of residual hearing to develop speech and language.

Manual – using the hands to communicate. Auslan is the sign language of the Australian Deaf Community. Other methods are Sign systems and Finger spelling.

Written – communication via the written word.

Detecting visual problems

Parents need to be alert to signs of possible vision defects and to have their child’s eyes checked periodically.

If your baby is having difficulty focusing on your face or on objects at four to five weeks of age, visual problems should be suspected. If the eyes move rapidly from side to side as they try to focus, if they do not react to a bright light being turned on or the pupils appear white or cloudy, see your doctor promptly.

Medicare rebates are available for detailed vision assessments for children 3-14 years old.

The Healthy Kids Check, introduced by the Federal Government in 2008, is a free basic health check for every four year old, carried out by your local GP. It includes a physical assessment of the eyes and a discussion with the parents of any concerns about eyesight. If any issues are identified a referral to an optometrist or ophthalmologist will be made.

In Year One all primary students in Queensland are screened for sight and hearing.

Support for the child with a vision impairment

Early intervention for vision impaired children focuses on speech and language development, and educational and social development. Orientation and mobility skills training begin early so that children learn to move about safely. Basic life skills such as eating, drinking, bathing and dressing also need specific teaching.

Vision Australia is often the first service that parents of a blind /vision impaired child turn to. It provides, free of charge, training and resources to support the child and family from birth through to school leaving age. At each life-stage the child is taught skills aimed at maximising access to education and independence. Before school-age Vision Australia assists the child to learn age-appropriate living skills, orientation and mobility skills, and early braille literacy skills.

Guide Dogs Queensland has been helping vision impaired and blind children and their families for a hundred years. They can provide counselling, resource and support information from a very early age. Instructors use play and exploration activities to encourage sensory and concept development, and to teach early mobility and orientation skills. Special Education programs can be delivered in school, home or community settings and on Guide Dogs Queensland’s holiday camps. All services are provided free to clients.

Kai’s journey to independence

Caloundra mother Kelly Loomes has two sons: six-year-old Kai and four-year-old Trey. When Kai was six to eight weeks old Kelly and her husband noticed something wasn’t right with Kai’s vision and mentioned it to their doctor.

“Kai was three months old when we were told that he had Septo Optic Dysplasia and is totally blind,” Kelly says. “I was a mess and couldn’t stop crying.  The drive back to Caloundra from Brisbane was horrible, I felt numb.

“I couldn’t believe that my beautiful baby boy was blind, it was heart-breaking.

“To begin with, all we could think of were the things Kai would never be able to do and how all our dreams of how his future would be had been shattered, but we soon realised that that wasn’t the case and he was still very capable.

“Kai was still the same gorgeous little boy – he just couldn’t see – and we were going to do all we could to provide him with the best opportunities we could for a bright and independent future.”

Kai attended an early intervention playgroup once a week at Talara Special Education Developmental Unit from five months to about three years old. When he was 11 months old Kelly made the trip to Brisbane with Kai once a week to attend a similar program at Narbethong Special School. For the next two years he attended Narbethong twice weekly and last year completed his Prep year, attending four to five days a week.

“The travelling was hard, but well worth it,” Kelly says.

“Thanks to the teachers at Narbethong and the therapist from Vision Australia, Kai was given the best opportunities to grow and learn. 

“Therapists from Disability Services Queensland also visited Kai at our home once a fortnight.”

Kai now goes to Currimundi Special School and he loves it. “The teachers at his school are wonderful and so is the program,” Kelly says, listing the many improvements in Kai’s skills and behaviours. Kelly says that they still have “bad days” but “Kai is an amazing little boy and we are so proud of him and how far he has come.  We couldn’t imagine our life without him in it.”

News flash

The recent Queensland State budget included $4.46 million for the Hear and Say Centre which is part of the Government’s commitment to double the number of cochlear implants available to Queensland children. Treasurer Andrew Fraser said of the children with a cochlear implant who use the Centre’s services, 97-99% are able to participate in mainstream schooling by the age of five. Hear and Say founder Dimity Dornan said the funding would make an enormous difference to Queensland kids. “It means putting young hearing-impaired children on an equal hearing footing with other kids their age,” he said.

Further reading

My Silent World

Nette Hilton and Vincent Agostino

The silent world for one young deaf child is about to disappear. She is being fitted with a cochlear implant which she calls “The Intruder”. This is a wonderfully original story about disability and difference with illustrations by an award-winning artist.

Need advice?

When it comes to choosing a preschool or school for a child with a disability, seek advice from Special Education staff within Education Queensland or independent schools in your area. Alternatively, visit: www.hearandsaycentre.com.au, www.aussiedeafkids.org.au, www.visionaustralia.org, www.guidedogsqld.com.au