Thirteen-year-old Alice O’Sullivan’s strength is in her attitude. She loves life and wants to make the most of it. Alice has cerebral palsy and cerebral vision impairment. She has never let physical limitations stop her from achieving her goals. Alice is a straight-A student, loves swimming, has travelled overseas, and is a talented singer. Alice says “you don’t have to have perfect sight to enjoy the beautiful works of talented musicians, or become your own musician.”
Alice and her mum, Jackie, spoke to VisAbility to share more of her story of independence.
Alice was born two months premature and scans showed she had brain damage to the pathways that surround the ventricles.
Alice’s primary diagnosis was cerebral palsy. King Edward Memorial Hospital were a wonderful help and Alice commenced intervention immediately after diagnosis. She began having regular physiotherapy when she was still one month premature, and this has continued ever since.
Alice mostly uses a powered wheelchair to get around independently. She practices walking in a special walking frame which requires assistance and she wears Ground Reactive Ankle Foot Orthotics. Instead of writing, Alice uses a keyboard or iPad. She has had several major surgeries and many intervention procedures in her life – more than I can count.
Alice developed a bilateral squint in the first few months of her life. I also noticed other unusual behaviours that made me question if there was more to her vision issues than simply a squint. I kept asking her paediatricians why she did this or that and eventually they suggested that she might have something called Cerebral Vision Impairment (CVI). At last I had an explanation, but little did I know how little about CVI was known amongst medical and support services.
Alice began receiving services from VisAbility just over six months ago. She has thrived with the expertise and assistance from Orientation and Mobility Specialist Amy Barrett-Lennard. By listening to us and asking questions, Amy was able to isolate a few areas in which Alice had a specific visual disability.
The first was visual orientation. Alice has no orientation memory, so Amy introduced her to an App called Blind Square. Alice got an iPhone for her Birthmas present (Alice made up Birthmas as her birthday is so close to Christmas, so she usually only gets one special present!) and we put the Blind Square app on it.
Over the Summer holidays, we put markers all around her school, so she can find her way between classes. Most of the time friends help her, so she doesn’t need it, but it’s always there as a backup if she becomes disorientated. Just recently Alice has been using Blind Square to go to school and come home by herself.
The next area that Amy helped Alice with was depth perception. Alice can’t gauge stairs, gutters, curbs, or generally the change of one surface to the next. Now she uses a cane to help her feel the changes.
She loves her cane and has named it ‘Mosie’ because it helps her mosey along without being surprised, and bonus: it parts crowds like Moses parted the sea!
Actually that is a real benefit because before Mosie, people and especially kids would always jut out in front of Alice’s wheelchair. She wouldn’t see them immediately and would crash into them. She didn’t like being a hazard in public.
Now people see the cane and give Alice space. Instead of her apologising to people, she now thanks them for showing her courtesy and she has gained confidence when she’s in public places.
The third thing is a bit more complicated. Alice has difficulty with understanding her positioning in space and is very scared of falling. She described this one day as a feeling like when you are flipping underwater and don’t know which way is up. A bit like vertigo. This helped us realise that Alice’s vision was in fact not helping her with exercise, it was putting her off!
Amy once again assisted us with her expertise. We trialled reduced vision goggles and once again the results were astonishing! Alice has since discovered the joy of exercise for fitness and uses her cool, modified ski goggles to restrict her peripheral vision whenever she is doing any land-based exercise.
Alice’s main interests are singing and swimming. She also enjoys music, theatre, spending time with friends, parties, everything about school, and all animals. She loves travelling overseas, learning about different cultures and different foods, helping others and shopping.
Alice sings in a chapel choir and a general choir and has voice lessons at school. She swims with Superfins and whenever she has spare time, she exercises at Next Generation. She loves going to pop concerts, musicals and dramas.
I know I sound like a biased mum, but honestly she is an amazing young lady. She is such a pleasure and a positive force that helping her is truly a rewarding experience.
Take 5 with Alice
What’s something fun you like to do?
“I’m a singer! You don’t have to have perfect sight to enjoy the beautiful works of talented musicians, or become your own musician.”
What do you want to be when you grow up?
“A psychologist. I’ve been told I have a talent for talking to people and I love to make people feel good about themselves, it’s very rewarding.”
What do you like most about VisAbility?
“The amazing people who work there, they always make sure I have the perfect tools to help me with my impairment.”
What do you love about your friends and family?
“The thing I love most about them is they accept me for who I am and what I like. Because of my visual and physical challenges it has always been extra hard to make friends, but I always kept hunting for someone great and I eventually found them.”
What makes you laugh?
“My Beagle dog Coco, the things she does and noises she makes are so funny!”
VisAbility’s professional therapy and support services assist people across a range of ages and disabilities. Alice receives targeted services from VisAbility including Low Vision, Orientation and Mobility and Assistive Technology.
VisAbility focuses on achieving outcomes, promoting mobility and independence, and improving each person’s quality of life. Contact us to find out more.