COME 'N' TRY DAY TRIPS LAKE MOUNTAIN.

Saturday 31^st July

Contact Mandy Roche (B) 9529 1466

Saturday 15^th August Peter Rickards B 9864 9237

HOPPETT CAMP & RACE WEEK END:

Friday 27^th August & Saturday 28^th August Staying at Towonga

Contact Peter Rickards (B) 9864 9237 (H) 9882 6900.

The DOE provide an opportunity for blind and vision impaired students aged 15 and older to drive a car. Preparation is well underway for the exciting 2-day driving camp in term 4. The camp will be held in the week of the 22nd to 26th November. Heatherwood School Council has now granted approval and visiting teachers will be receiving copies of the necessary paperwork for distribution. Contact your child’s visiting teacher for further information.

There are a number of disability related payments available through Centrelink, these are listed below, however it is important to check with Centrelink for entitlement criteria and changes to benefits as this list is intended as a guide only. Centrelink has recently dedicated a telephone number for people with disabilities and carers. All operators have been trained in disability awareness. The number is 13 2717

Entitlements for people with disabilities and their carers include:

• Child Disability Allowance (CDA), known after July 1 1999 as Carer Allowance (Child)
• Carer Allowance (Adult), known before July 1 1999 as domiciliary nursing Care benefit (DNCB)
• Health Care Card and pensioner concession
• Carer Payment
• Disability Support Pension
• Pensioner Education Supplement
• Mobility Allowance
• Youth Allowance

This article appeared in Blind Citizens Australia news May 1998

When I was growing up, I always assumed I would eventually have children. Whenever I mentioned this, my parents, especially my father, would say: "Well, you'll have to wait and see how you feel about that." Since I did not much like babies and fancied myself heading off to the Supreme Court to indulge in my favourite pastime of arguing, this lack of encouragement did not much concern me. It was out of character, however. Everything else I ever said I wanted to do, my parents wholeheartedly endorsed.

My parents' reservations were not due to my total blindness, but rather to the condition which caused it. When I was twenty months old I was diagnosed with Retinoblastoma, a childhood cancer which, if it travels from the eyes down the optic nerve can cause death. Two days later, both my eyes were enucleated (removed), the tumours being by then quite advanced and there being few other treatments commonly available at the time. The trauma of this event was compounded by the fact that my father had received similar treatment for the same condition when he was five months old. Having been assured that his blindness would not be passed on to his children, my parents had also to adjust to the sudden shocking news that the condition was hereditary.

My parents always emphasised that the doctors had given them incorrect advice. I found this assurance discomforting, since it appeared to imply that if they had known the facts, I would not have been born. I do not know whether or not this is the case, but my parents did decide they could not cope with any more blind family members. I was the second and last child.

My father and I rarely discussed Retinoblastoma. When he was diagnosed with cancer, he was devastated to learn that this was possibly a secondary manifestation of his childhood disease. He was proud of all my achievements and was present when I was admitted to the Supreme Court of Victoria as a solicitor and barrister, three months before he died. I don't think my father ever overcame his sense of guilt for my genetic inheritance. Paradoxically, his position as a totally blind parent put our family in a more powerful position than most families of children with disabilities in the 1970s. The prevailing philosophy was that the experts knew better than parents how to bring up blind children. My father, with my mother's support, was able to ensure that I attended a sighted kindergarten, that I did not board at the blind school (ten minutes drive from our home), that I went to the same school as my sighted sister and that I became proficient in Braille, including Braille music. This was all in the context of dire warnings that matrons and headmasters would not be held accountable for the consequences of my parents' reckless independence!

My father, Alan, was the first blind person to win a permanent fulltime position with the Victorian Education Department and was a music lecturer for many years in the tertiary sector. He was the organist at various churches and was frequently on committees of relevant community groups, such as the Girl Guides and the Blind school. In him I had as a role model a blind person taking an active and responsible role in society.

As a child, of course, I was not conscious of any of this. My mother was responsible for all childcare and household management. As the sighted partner in the marriage, and particularly as the only driver, she certainly took on additional responsibilities. I am sure, though, that the fact that my father was never expected to cook or clean was based on his gender, rather than his disability. Mum certainly never encouraged me to think that it should excuse me from any of the chores she doled out to my sister and I. Later I was grateful that she had taught me to cook, shop, iron and (to a lesser extent) sew. I understand that it is difficult for parents to allow their blind children to take risks, but I am always disappointed when I meet blind adults who have not been given these opportunities to experience truly independent living.

I grew up knowing that any of my children would have a 50% chance of being born with Retinoblastoma. Although of course statistically quite possible, I have always felt that I would have to be extremely lucky to have any number of children without at least one of them inheriting this gene. Naturally I discussed this with my husband, who felt that it was part of the package involved in choosing to marry me. I rarely mentioned this aspect of potential parenthood, either to friends or during pregnancy. In the same way that my parents did not like to squarely discuss it, it never seemed quite "nice" to expect other people to deal with this reality. It is perhaps surprising that I have also never discussed it with any of the blind people I know.

People who are losing sight are very interested in and willing to discuss their particular conditions, but to people who are already blind, what caused it seems hardly relevant. We all seem to assume that we are used to our lot in life and have plenty to do just getting on with it. I think it is important to confront the fact, however, that in any condition where blindness is potentially hereditary, women and men considering pregnancy are effectively choosing whether or not to bear a blind child. In cases like mine, it is not an easy burden to know that in choosing to have children, you may be causing them to have cancer, not many years down the track when they have had the chance to enjoy life, but as babies. You may see the decision to have children as an affirmation of the value and quality of your own life, but it is nonetheless a decision for which someone else (your child) may have to bear the consequences. Many people must grapple with this issue and struggle to make a decision they can live with. What you decide will depend on your own feelings of self worth, the barriers you feel society imposes on you and other blind people, and how important other people's judgments are to you. I decided to write this article because I wanted to focus some attention on this challenging aspect of being a blind parent.

There is not much focus on any aspect of being a blind parent. The National Women's Branch of Blind Citizens Australia published a booklet, called "Kids are Fun for Everyone, on this general topic in 1995.. This is still available in Braille, large print and audio for fifteen dollars. The Nursing Mothers Association of Australia also sells an audio tape called "Breastfeeding Right from the Start". Both of these are invaluable resources for blind people wanting help with the practical aspects of parenting. Most issues in parenting involve individuals in making their own choices, whether they are blind or not. The most useful suggestion I can offer is that anyone with young children or expecting a baby seek out and befriend a few other blind people who share their approach to parenting. You will feel less likely to be judged and more likely to ask for practical suggestions when you confront challenges. For example, if you believe in giving your children plenty of space, you will not want to discuss ways of keeping track of them with someone whose solution is to contain the child in a playpen. For all parents, it is important to find positive friends who will support and encourage you in your parenting. This is particularly so when you are blind, as there are plenty of people, possibly including yourself and your relatives, who will impose impossible standards on you. All children sometimes get dirty, insist on going out in clothes that don't match or misbehave when their parents' attention is elsewhere. If you feel that the people you mix with are constantly attributing everything you or your children do to your blindness, you will find socialising unbearably stressful.

During each of my pregnancies, my mind has been largely occupied with the more obvious problems of being a blind mother: how will I change nappies, how will I entertain one child while breastfeeding another (reading Braille with one hand is difficult), and now, how will I walk anywhere with three little children? At my first antenatal visits, obstetricians have asked me if I wished to have genetic counselling. I have declined. I already know the odds, and I cannot change them. I would rather not have information about my foetus on the basis of which I would be forced to make impossible decisions. However, if I did have testing, it would be important for me to know how reliable the test was and the range of possible effects the condition could have on the baby's sight.

I knew that each baby's eyes would need to be checked reasonably soon after birth, but that was as far as I thought. I thought so little of it that I took my eldest daughter, Emily, to see the ophthalmologist by myself in a taxi. He made a cursory examination and recommended a further examination under anaesthetic when she was four months old. Then I focussed on how we would cope with an anaesthetic; how could she survive without a feed for four hours! Emily had four anaesthetics before she was two, after which she was always more alert than us. She will continue to have check-ups every six months until she is six. That is the latest the condition has shown up in a family setting. We have been lucky with Emily, but there is always some tension when we arrive for her appointments. She understands that it is important for her to accept the eye drops and that the doctor check to make sure her eyes are good, not broken like Mummy's. I hope she will grow up understanding about Retinoblastoma and blindness, but that she will continue to have no fear of it.

Our second daughter, Felicity, has not been so lucky. We were told at her first cursory examination, at three weeks, that she had Retinoblastoma. We were both as prepared as we could be for such news, but we were not prepared for the medical maelstrom into which it plunged us. We had both thought about the implications of having a blind child. We thought we would cope relatively well with this, as I would have valuable skills to impart. We had not thought about the treatment options which are currently available and the many impossible choices we would be called upon to make. Within a week, we were waiting at appointments for paediatric oncologists and trying to process information about central venous lines, chemotherapy, radiotherapy and lasers.

Because Felicity's tumours were detected early and because of their size and location, we were informed that the best treatment for her would be a course of chemotherapy to shrink and sensitise the tumours, followed by laser surgery to kill them. I was strongly advised that enucleation was not a necessary consideration at this early stage. I have since learned that it seldom is, as in a sense it is a capitulation for an ophthalmologist to effectively blind his patient. I am not saying that I would have wanted Felicity to be blind, but for me it certainly was not the worst possible outcome. The details of the risks involved in treatment are complicated and tedious, even for us. The Retinoblastoma carries with it a risk of developing secondary cancers. Chemotherapy can also cause subsequent cancers, infertility and deafness, although not, we were assured, with the chemicals and dosages to which Felicity would be exposed. Radiotherapy on infants can retard bone development and have other effects on the brain. It also increases the risk of secondary cancers, particularly if added to chemotherapy. People who are faced with imminent death will probably overlook these risks in the hope of prolonging life. Our quandary was that we had to weigh these risks plus an indeterminate degree of vision, against total blindness. We could avoid all but the hereditary risk by having both eyes removed, although there was the chance that at least one eye could have quite good sight. Alternately, we could gamble on retaining some sight, accept all the risks and still end up losing both eyes if the treatment did not work. Obviously it was crucial to know how much sight we could realistically expect Felicity to have if all went according to plan. I wanted to know if she would be able to drive a car or to read normal print, or even large print. Ophthalmologists are not keen to give estimations of potential vision. There are children who, having already lost one eye, have undergone all these procedures and seem likely to have very limited vision when all tumours and scarring are taken into account. Their parents may consider that any risk is worth just a little sight. They are fully entitled to make their own decision, but all too often parents are not given meaningful information about what they might expect their children to be able to see at the end of it all.

We agreed to the chemotherapy and laser treatment, but for a limited period. At around six weeks, Felicity had a central venous line (flexible tubing) inserted into her neck. All her drugs were administered through this, so that she did not have to suffer injections. I spent several days in hospital with her. After that, every month we were outpatients for three consecutive days. At the time I told few people about all this. I explained to those who expected me to do things that they probably would not be done, I told friends whose help I was likely to need, and I told the important details to closest family members. I felt that in not talking about it freely I might lead others to think I was ashamed of what was happening to Felicity. It was rather that I felt my first obligation was to myself and my family and that only once I had come to terms with what was happening could I deal with other people's shock, sympathy and questions. I used counselling services which were offered to me, as I felt it was vital to deal with my sense of guilt early rather than have it affect my ongoing relationships with my children.

I found my time as the blind parent of a sick child extremely stressful. The ophthalmologist was not at ease with me, because we had different value systems. The oncologists had a more flexible approach. I was keen to portray myself as a competent, caring parent, whose life was still worthwhile, even without sight. This was difficult since the hospital was extremely spread-out, had few distinctive landmarks and most people were preoccupied with their own concerns and anyway usually did not know where it was you wanted to go. Orientation to the hospital did not rank with my other priorities of keeping appointments, waiting indefinite periods and getting home to Emily. It was also difficult to get around with a baby attached to a drip stand bearing hazardous chemicals. Even to go to the toilet or get a cup of coffee I needed help, since there was no-one to watch the baby and there were people and trolleys all over the corridors.

I also found relationships with other parents extremely tense. As a rule, few people spoke to each other, although we spent whole days sitting around our children's beds in more or less total boredom. If parents did speak, their questions were usually: "What's wrong with your baby? When was it diagnosed? How did you find out about it?" My answer to the third question usually stumped them. I don't think they knew how to deal with someone who had apparently willingly sentenced their child to the cancer ward. We found communication easier with the other parents of Retinoblastoma children. I often felt uncomfortable, being totally blind while we all suffered incredible hardships to save some degree of our children's sight. I hope, though, that since one day their own children will have to make decisions about becoming parents, seeing me with my two girls might leave some positive impression.

I would not describe myself as fiercely independent, but I have always liked to do things my own way. Some of this I also had to jettison in Felicity's interests. Chemotherapy destroys fast growing cells; these include cancer cells but can also include hair, saliva and antibodies. Because of her lowered immunity, it was not advisable to use public transport. I was obliged to rely on friends to transport us to and from the hospital, usually at ill-defined times. I gave up going to most meetings, to reduce her exposure to infection. I was also reduced to asking for help with nappy changing, as when waste products include the chemotherapy wastes gloves are supposed to be worn. I was particularly concerned that the hospital staff should think I was capable of caring for my baby myself. I reacted angrily when they informed me that I would have to wait for Peter to get home before I could bathe Felicity and dress her central line. The nurse patiently explained that this was such an intricate, no-touch procedure, that no-one could perform it on a baby unassisted. Taking Felicity's temperature was also crucial, as if it rose above a certain point, it meant she might have a life threatening infection and we must go immediately to Emergency. I bought an expensive talking thermometer, which I found unreliable and slow, so again I was occasionally forced to ask for help from a neighbour. Felicity needed various antibiotics, and precision in dosage is important for babies. I tried various methods of marking syringes etc, but ultimately found it least stressful to remind Peter to draw up the doses at five thirty each morning before he left for work. Then I only had to worry about getting it into Felicity's mouth!

I find it hard to believe now that all this happened to our family. Felicity is an extremely happy and affectionate toddler. She has benefited from Early Intervention services, to ensure that her development was not unduly delayed by her medical condition and that she makes maximum use of her vision. She has so far had an excellent outcome from all her treatment. She has only peripheral vision in her left eye, but fairly normal vision in her right. Occasionally people comment that she has a turn in her left eye, which I am afraid I find annoying. After all she has been through, if she is left with a slight cosmetic defect, I am not going to lose sleep over it. She uses the vision she has well and would not be considered vision impaired. She should even be able to drive a car! She still has examinations under anaesthetic every three months, which we dread because she hates all medical procedures, including being weighed and having her temperature taken! There have been occasional small tumours which have been treated locally. The older she grows, the less probability there is of new tumours and the more likely it is that they would be peripheral and so would cost her less vision. Of course as the tumours were not excised, oncologists will not say there is no danger so we must be vigilant for many years to come.

Emily knows that Felicity's eyes did not work as well as they should and that she needed to have very special medicine. Felicity as yet understands nothing of this, except that doctors and nurses are to be mistrusted. We will explain her condition to her as she grows and asks about it. I hope she will understand that we have made the best decisions we could at the time. Later she will have to make hard decisions of her own.

Some people expressed surprise when we told them we are expecting our third baby in July. I have already made its first appointment with our ophthalmologist. I am not sure how many times I could go through what we have experienced with Felicity, but I am constantly reminded of how rich my life has become since I chose to be a blind parent.

In reflecting on my experiences of life as a person with total?

blindness I can say that from my parents' point of view the process of rearing me was as much of a learning experience as it has been for me to live through it.

I arrived rather earlier than expected and, as was common practice at the, beginning of the 1970's, was given large amounts of oxygen within an incubator to keep me going. The treatment was successful, although my eyesight was destroyed as result.

I was the first of three children born to migrant parents who had little if any knowledge or experience of disability either within their families of origin or the communities from where they came. They had to deal quite early with the array of services children with vision impairments use. I made the rounds of various ophthalmologists whom, in turn brought me into contact with a home visitor from RVIB. She provided support for my parents and some kind of play therapy for me. Together, we explored the delights of play involving the senses of touch, taste smell and hearing with the help of different types of rattles, play dough and shaving cream.

The next phase of my education took place at the RVIB preschool and kindergarten where I initially made weekly visits, and then boarded. I was introduced to daily living skills, braille and to my blind peers, from a variety of backgrounds. I progressed through to Grade 1 at the RVIB school, learning the basic skills I needed to function educationally and in daily living. Looking back, this period of time was spent in two quite different worlds, that of my family and that of school. However, life was interesting, full of new things to learn.

The RVIB school was quite far from where my family lived, so Mum and Dad were keen for me to attend our local primary school so I could spend much more time with them. They introduced me to this idea, and I remember being enthusiastic, without knowing much about what changes it would mean. This integration gradually took place, and I began spending more days each week at the regular school, until I reached Grade 3, when I stopped attending RVIB altogether, except for special programs. Despite the challenges, the huge number of students there seemed to be at school, and the isolation of being one of the few students with disabilities in that school, my primary years were relatively happy ones. I found at that age, kids are happy to incorporate differences into their experience, and was willing to offer and receive friendship.

High school, was unfortunately not such a social success.

Although the social development of vision-impaired students was viewed as important by blindness agencies, I believe students were left very much to their own resources when it came to sorting out their own adolescent struggles, along with their classmates' reactions and prejudices. I remember feeling somewhat isolated and lonely at school, and vastly enjoyed the Support Skills Programs at RVIB, as they gave me grounding in important daily living skills and offered much-needed peer support as well.

My time at high school also coincided with the use of computer technology by vision-impaired students. I used a tape recorder all the way through school, as well as a "Braille-to-Print", a device that connected to a Perkins Brailler and produced a print-out of the brailled material via computer software and a printer. I also received a basic introduction to computers and screen-reading programs, but did not succeed in using them fully until the end of my university studies and in the work force. Due to some financial and administrative complications, I ended up using a braille note-taking device during my university years. Computers are an exciting development, and are opening opportunities for children and adults with vision impairments, as well as creating challenges.

I enjoyed the academic aspects of school, and put a lot of effort into doing well. I had a leaning towards the humanities, and succeeded in getting a place within an Arts degree after completing the HSC, as it was then. I moved into a residential college at Monash University, and enjoyed the subjects I studied and the contacts I made with students from diverse backgrounds and interests.

I have always had an interest in people, and a concern for how we survive within and try to change our life circumstances. At the end of my Arts degree I was accepted into Social Work at Victoria University of Technology, and began working towards a degree which would allow me to put this interest to practical use. I graduated eighteen months ago, and have since held two short-term positions. Participation in various types of voluntary work, including committee membership of blindness agencies, and telephone counselling has also been important in developing skills and friendships.

Taking different paths has meant learning new skills, overcoming challenges and advocating for myself to remove some of the obstacles of blindness. Life is certainly full of ups and downs, challenges, confusion and achievements.