Rehabilitation: The Ongoing Journey

 

I have written this section to assist other people who may find themselves in my position - the experience of assisting a catastrophically injured person after an accident. I hope that what I have achieved with the assistance of my friends will help them travel the journey through rehabilitation. (Judie Stephens ~ July 1999)

The Journey Begins......

It was 27 November 1993 when I learnt that my daughter and her husband had been killed as the result of a car accident and their pre-school sons, Matthew (aged 5), David (aged 3) and Jackson (3 months) had survived.

It was not until later on that fateful day that I learnt that the baby, who was thrown 10 metres from the car, was catastrophically injured. As a result of the accident, Jackson was left deaf, blind and quadriplegic. He spent the next 6 months in hospital, unable to swallow, speak or hear. Days ran into weeks and into months and not a lot seemed to happen. Due to fluid on the brain (hydrocephalus) Jackson underwent surgery to the brain on five occasions for the next two years. Later he had a hip operation and is involved in a daily rehabilitation program.

The Early Days......

Doctor Ric Dunstan, Paediatric Registrar for brain injured children at Sydney Children's Hospital, was one of the first people we met. Doctor Dunstan has taken the journey to rehabilitation with us and has guided us through all levels of Jackson's daily care and rehabilitation.

Helen Wills (Early Intervention Centre, North Rocks) taught me how to play with Jackson and understand his environment. She has become my mentor and her experience has assisted me throughout the journey.

Mainstream Rehabilitation......

Throughout our journey, I have always considered it very important that Jackson participate in age appropriate activities and that he be with other children living in mainstream situations. It has been important that Jackson have the opportunity to holiday with family and friends, go camping, experience crowds, go shopping and do all other activities families engage in on an on-going basis.

Kurrumin......

Our home, Kurrumin, is an Aboriginal word for 'reflections'. It provides a sensory garden, heated hydrotherapy pool, inground pool and wide passages and doorways. There is colour and contrast for people with visual impairment and many other sensory stimuli to assist Jackson. The design excellence is attributed to
Lend Lease, a multinational company who showed a great level of understanding of what was needed. The house was designed to ensure that Jackson and other children with varying levels of ability who share our home have optimum opportunity to move around in an unrestricted environment.

The focus is on 'I Can Do' ......

We watch what he "can do" and develop these skills. Jackson's hearing is now acute and, like most 5 year old boys, he is much more interested in peripheral sounds rather than what is being spoken. His sense of smell is also very well developed.

Jackson's home-based rehabilitation involves daily hydrotherapy, occupational therapy, physiotherapy and speech pathology. These team members take great care to co-ordinate Jackson's home-based program. They provide assistance with Jackson's day to day living and opportunities for him to become more independent. Jackson has tasks to complete just like other children, including learning to wipe up, wipe down his tray, washing himself, cleaning his teeth and putting things away after him.

Jackson has just learned to feed himself, albeit with much assistance to get the food on the spoon. It was only in June 1999 that Jackson held a half piece of banana and managed to eat it. Jackson's drinks are made to a 'nectar' consistency which assists him to swallow more easily, preventing choking.

Speech and Vision......

When a person has poor vision, learning to reach and grasp for 'cause and effect' is in itself a long process. Jackson is just starting to learn at age 5 to reach for things himself. He likes musical instruments and various tactile objects. However because he doesn't always see what he is doing with them, we have to ensure that he doesn't feel insecure, threatened or concerned when confronted with unfamiliar opportunities.

Education and Learning......

This year Jackson was accepted to Alice Betteridge School for the deaf, blind and multiple-handicapped children. Here Jackson has the opportunity to learn at one of the best schools of its type in Australia. Alice Betteridge School is also internationally acclaimed for its program of education. At this school, Jackson has an individual educational program and what he learns at school is backed up with his home-based program. Through these programs, Jackson has a high quality of life and a well-supported learning environment.

Equipment......

Providing equipment to assist with mobility and rehabilitation has a high cost both financially and in time. All equipment must be well maintained and regularly cleaned. If a piece of equipment breaks down it can cause great discomfort for both Jackson and his carers.

Jackson's equipment consists of one wheelchair for day to day use for eating meals etc and another for his van. Jackson also requires a bath hoist, bean bags, soft play equipment, non-slip mats and the Anderson walker. All form an integral part of the process of learning to move and make safety more certain.

Significant People in Jackson's Life......

This includes his family, with special tribute to Peter Stephens, his maternal grandfather who lives on a farm outside Sydney. As Peter rings Jackson daily to converse with him and visits him weekly, he is a major figure in Jackson's development program at school and home. Peter's calls assist Jackson to learn the concept of 'turn taking' and to develop an understanding of communication.

Jackson's big brothers, Matthew and David, see him weekly and he has cousins and aunts and uncles who are very devoted to him. Jackson communicates through the use of simple words and gestures. He also expresses feelings of happiness and, when appropriate, cries. Much of the communication with Jackson involves observing his body language and facial expressions. Those of us who know Jackson well are generally able to provide him with conversation and a level of understanding that is beneficial to us all.

Milestones......

Friday 13 May 1994 - Jackson came home from hospital. Soon after, he had his hearing aids in place. Following Jackson's release from hospital, I studied with the
Hadley School for the Blind in Chicago, Illinois. The dedicated team of experts there enabled me to assist Jackson with his vision and to help Jackson to understand his environment. In 1995, I took Jackson to Chicago. I am thankful for the opportunity I had while we were there to learn more about Jackson's condition and for the support the team gave me.

When Jackson was a little over 2 years old, his hearing returned.


Saturday 29 May 1999: Today Jackson walks. He walked 2 kilometres outside his home, in a walker designed two years ago by a friend, Kel Anderson. Initially Jackson was reluctant to walk, but once some modifications were made to the walker, we were delighted with the results. Unbelievably, Jackson has never crawled, cannot sit up unaided or stand up unsupported, but, he can walk! A great tribute to his persistence! Jackson sees his ability to walk as a great means of escape and, like most boys his age, can't wait to take off up the street.

The Future......

Jackson is a great little guy and he brings untold joy to his family and those who take the time to be his friend. Due to the devotion of all those people involved in Jackson's rehabilitation and educational program his future looks very positive. Our focus for the future will on ensuring that Jackson will have the optimum level of opportunity to achieve his personal best. By focusing on what Jackson "can do" our goal is to see him healed completely and lacking nothing.

 



HOME