Our family has five members – Mike, Carmel, Natalie, Anthony and Matthew. This is Natalie’s story.

Natalie, who was born in 1978, is wheelchair bound and is totally dependent on her aging parents.

The birth of a child, particularly the first born, is one of the happiest events of all. However, this joy and happiness was soon shattered when Natalie turned blue shortly after birth. Tests revealed that she had a serious medical problem and was diagnosed with a genetic cardiac condition known as Fallots Tetralogy.

This usually involves four main defects in the heart structures of infants and young children. Together these defects cause reduced blood flow to the lungs and mixing of blood from both sides of the heart. This results in oxygen-poor blood flowing out of the heart and into the body – usually resulting in blue-tinged skin (cyanosis). We were advised that corrective surgery would be required at a time to be determined depending on her medical condition following regular chest x-rays, ECG’s etc.

When we took her home from hospital, we needed to be watchful for any episodes of cyanosis which is a bluish coloration of the skin caused by blood low in oxygen and also any shortness of breath and rapid breathing.

Her early childhood days were happy ones spent mostly doing less physical activities and this is where Natalie acquired her love of craft, puzzles and music. When she was only 2 years old she was able to complete a 60 piece jig saw of a map of Tasmania! She loved to do this with her grandfather and took great delight in telling pop when he got it wrong!

When Natalie was almost 2 years old, we welcomed Anthony into the world in August, 1980. Natalie was very excited to have a new baby brother and was very helpful in looking after him. Then when Natalie was just over 3 years old, we welcomed Matthew into the world in January, 1982. Both Natalie and Anthony were excited about this new baby brother! So as you can imagine, life was very busy in our household at this time!

From the start of 1982, Natalie’s health started to deteriorate. She experienced numerous chest infections and various tests indicated that surgery would need to be undertaken before the end of the year.

The date was set for 28th September, 1982 at Prince Henry Hospital, Little Bay. We were advised by Natalie’s Doctors that they were confident of a successful cardiac repair. The anesthetist mentioned (almost in passing!!) that there was a small risk of brain damage. However, our worst nightmare was confirmed when as part of the cardiac bypass process, Natalie suffered irreparable brain damage. The prognosis by her Neurologist was extremely gloomy in that she may never walk, talk, feed herself or be independent again. Also her sight and hearing would be impaired.

Our whole world was turned upside down!! We were able to leave the boys with Natalie’s grandparents and spend as much time as possible at the hospital trying to come to grips with the situation. She was moved to Prince of Wales Hospital where she underwent regular physiotherapy and was tube fed. This situation continued for many months as there was no alternative support care available.

Then in February, 1983 with the support of the hospital’s social workers we were able to get her a place at Allowah Babies Hospital at Dundas. This hospital specialised in 24/7 care for babies with similar medical problems to Natalie.

She made progress under their numerous therapy programs and when they felt it was time for her to move on, they suggested the Multi-handicapped School for Deaf and Blind Children at North Rocks (later renamed as the Alice Betteridge School).

Natalie was accepted as a student in June 1983 and as a live in resident in June, 1984. She continued to make good progress in all areas and was even walking independently at one stage.

However, she soon started having falls and tests showed that she was experiencing myoclonic jerks (akin to epilepsy) so she was alert enough to know that walking was going to be difficult and that’s when she had to resort to a wheelchair for the majority of the time. She remained in residence till February, 1986. We were then given the option of leaving Natalie in residence or bringing her home to live while remaining a day student at Alice Betteridge. Of course we chose the former option by having Natalie return home to her rightful place in our family.

This placed an enormous strain on the family as we had 3 children under 8 with one totally dependent.

She remained a student at North Rocks till graduation at 18 years of age in 1996. This was a very proud day for Natalie and the whole family as she had made progress in most areas. However, by this time she was totally wheelchair dependent.

At the start of 1997 she was accepted at the Crowle Foundation at Meadowbank as part of their Community Day Services Program. She is still part of this program under a merger of the Crowle and Achieve Foundations now under the banner of the AC Foundation.

For the majority of the time since Natalie returned home in March, 1986, our access to any form of respite has been extremely limited. However, since 1999 we have been able to access a couple of limited respite services and also a weekend group on either Saturday or Sunday. This gives us some relief in that we can function like a normal family and sometimes even get away for a couple of days.

Natalie is totally dependent and as a result, a typical day in our life involves waking Natalie up about 7 am, completing her personal care, dressing and preparing breakfast and administering her medication prior to her taxi arriving around 8.45am. On return from her day program at 3 pm, she is given afternoon tea and usually engages in some craft e.g. colouring in or watching TV till tea time. After tea, she may continue with some craft and watch TV till shower time around 8.30pm. She is usually in bed by approx. 9 pm.

Following family discussion on options with regard to Natalie’s ongoing home care, Mike took early retirement in 2001 to give me some respite from the many years of care and to enable me to increase my employment opportunities. Going to work gives me some sense of normality combined with the social interaction which I find very important. It also keeps me sane!

Mike does manage some occasional part-time work and social interaction by playing golf during the week but is restricted by time constraints in having to be home by 3 pm to await Natalie’s taxi.

Despite Natalie’s disabilities, we were mindful of providing her younger brothers – Anthony and Matthew – with as normal a family life as possible trying to ensure that they didn’t miss out on anything.

Natalie would come to all of their sporting events and was regarded as their best supporter. While most families were very supportive and understanding of Natalie’s situation, there were often unkind comments made by the boys’ team mates. I think both Anthony and Matthew found this hard to take at times. I often overheard Anthony comment that the ‘doctors got it wrong’ and that his sister was not a ’spastic’. We were also very conscious of the fact that both boys were reluctant to bring their friends home.

Family holidays often spent on the Central Coast were quite difficult. We would usually take Natalie with us for one week and then take her back to North Rocks (where she was still a student and we were eligible for some respite) for the second week. Then we would try and access all of the activities with the boys that weren’t possible when Natalie was with us because her immobility was as much of a problem as her total dependency.

With regard to Mike’s and my relationship – well what can you say? Although there have been some very rocky passages, we’re still together in spite of the daily strain and stress of caring for a child with severe intellectual and physical disabilities. Any time spent together (while Natalie is in respite) where we can try and relax and unwind is precious.

What we’re all aiming for is a safe, suitable environment for our children in supported accommodation where we the parents can have a say. The current situation is very grim in that we will probably not be offered anything until we are in crisis and our health has deteriorated or just can’t cope anymore physically.

Leaving Natalie in the care of her siblings is not an option – they will have their own lives to lead.

Surely in this the lucky country, it should be our right – and indeed Natalie’s right – to have a future offering some certainty in a safe, happy environment with her friends, in the same manner as her able bodied peers. The model proposed by RASAID with regard to an ‘intentional community’ should provide this.

In conclusion, I would like to add that in spite of her problems, Natalie has developed into a lovely young lady celebrating a milestone late last year in turning 30. She has a wicked sense of humour, no behavioural problems and is a delight.