Part of the reason why I started my blog Blind Intuition was to try and reach out to a community of other blind and low vision parents in similar situations to me. When I first lost my vision, it was a scary future. I didn’t know anyone who had a vision impairment let alone being a new parent. I felt so alone. Occasionally I get emails and messages from parents who are blind or have low vision in similar situations to me. Tarina Warren emailed me recently after coming across my blog through Vision Australia. It couldn’t had come at a more perfect time. We were in the car on our way back from a weekend with friends at Mount Martha and my voice-over read her email out loud. Cameron and I listened to the email and both were in awe. After a few emails back and forth, I askedTarina if she would mind writing a guest post for my blog. She has a positive and remarkable story, is a wife, mother of three children and has had a successful career. I think you will enjoy the read.
I am now 42 and have three children aged 14, 12 and 10 (soon) and I am married to a wonderful man who is a farmer. We live on the Yorke Peninsula in South Australia. I am originally from Adelaide where I lost most of my sight throughout childhood due to a genetic form of macular dystrophy called Stargardt’s disease. I was legally blind by 16 so never had a license. I had some time to get used to it and to choose an appropriate career knowing my vision was going to worsen throughout my life. So I am a physiotherapist and have been for 18 years now.
Losing My Eyesight
I had normal vision until I was about 7 and then my teachers noticed that I was avoiding maths. This was because I could not read from the board. I had a fantastic teacher for the next few years who helped to make sure I did not slip back in previously high grades. The first few years were probably the hardest as this was when my family was coming to terms with this. It took several more years to get an accurate diagnosis and initially my parents were told I would lose my sight and there was nothing that could be done. This was effectively true but there is a significant difference between being completely blind and legally blind and this was not explained to them. Soon after their marriage failed but my sister and I maintained a good relationship with both parents.
Navigating school and university as a legally blind student
The person most instrumental in ensuring my academic success was my visiting teacher from Townsend School for the Vision Impaired. I had several of these over the years and they came out to my school to provide training for my teachers and provided me with visual aids that I used to read small text and writing on the black boards. I was not always gracious in accepting this help and found it very hard to be singled out as different throughout my late primary and high school years. By year 12 I was legally blind and started to use more electronic assistance as the low tech magnifiers were no longer of any use. My visiting teacher played a key role in guiding me in to physiotherapy as a profession and even went as far as to negotiate with the University of South Australia to assure them that I was academically and physically capable of this. Thankfully I was always quite naturally gifted at school which helped. I think a watershed moment was certainly when the School of Physiotherapy at Uni SA agreed to take me on if I achieved a high enough year 12 score. In fact, the uni was very keen to make it work and were sure it could be done. Their positive and inclusive attitude gave me the confidence to be the first blind student to undertake this in this program. I am not saying there were not hurdles along the way. There were some academic staff that were less willing to embrace this challenge but the thing about physiotherapists is that they are excellent problem solvers and there was a solution for every snag along the way. I hope that my success in the course proved that the time and effort invested in me was worthwhile when I graduated 5 years later on the Chancellor’s merit list. Even though the visiting teacher service only follows students to year 12 I kept in touch with her and she was very proud of my success. I need to mention the invaluable assistance of RSB who took over in the supporting role with my education once I left high school. We were not rich people and the computers and CCTVs were quite expensive back then. CCTVs were $5000 each and I had one at uni and one at home which the RSB provided and also directed me to appropriate scholarships to assist with these costs. In addition they provided mobility training and all sorts of useful advice around Centerlink entitlements which meant I could focus on study and not worry about money.
My Career and Academic Success as a Legally Blind Person
The challenges of parenting as a blind mother
Having the children quite close together was a challenge but being self employed I found that it disrupted my business too much to keep stopping so we chose to do it that way. Having a mother who is legally blind has made my children very independent and has certainly advanced their academic development, for example from very little they were telling me what colour clothes were in the shop and reading me the size and prices. This lead to early readers and very competent students. They also developed social skills in dealing with adults and being more sensitive and aware of the needs of others.
Reading your story about wrangling toddlers reminded me of when mine were little and the trouble I had finding them at times when out and about. I resorted to putting bells on the back of their trousers where they could not pull them off. This was not necessary for long as I taught them to answer when I said “where are you” as you have done. It actually gets harder as they get bigger and more independent I am sorry to tell you. For example, when we are all at country football on a Saturday and they all go different directions it is extremely hard for me to find them. It is a small community so I can always ask someone to direct me to them but I need to learn to swallow my pride on this one more often and not be embarrassed to ask for this help. You just teach them all to wear a watch and return at a certain time or to be very specific about where you expect them to be. Once they have a phone it is good as you can text them to find you. At least you know they are safe when they are older but you just can’t find them. It can be very frustrating. You will look back on the frustrating challenges of having babies when you cannot see and find them quite funny. The stories are endless but one of my favourites was when I got in to a friends car with my first daughter, then 1 year, and my friend said “why does Julia have spots all over her?”We were off to visit a friend who had a new baby so I obviously got straight back out of the car. I think you could get quite stressed about things like Vegemite on faces and breakfast spilt down the front of their t-shirt but I tried not to worry about those things. Should have got a t-shirt that said “I am not a bad mother, I am blind” Ha.
I am a keen exerciser, but gave up running when I stepped in a pot hole and badly sprained my ankle about 5 years ago. I was running on my own in a fun run. Sometimes you get your ambitions and abilities mixed up. Now I do cross training type classes with my friend who is a Personal Trainer and walk my beautiful border collies every day at 6 am. They are quite good at leading me around when it is not yet sun up.
My best piece of advice for anyone who is losing their sight or has lost it, is to embrace the technology. This is what gives us independence. And, for parents finding themselves in this situation with a child give them the same opportunities as their peers and believe that they can achieve great things. This is the greatest thing my parents did for me.
I feel that my vision impairment has actually enriched my life as I have had opportunities and support that I would not have had otherwise. I am sure that you will feel more and more like this in years to come if not starting to already. No of course I would not choose this but I can certainly see that it has made me who I am.
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