We will use this section to provide updates on technology which has the potential to enhance the lives of children with Usher syndrome. This is one of the most exciting areas of support for children with Usher syndrome, and one that is evolving quickly.
In our first update to this section, we have kind permission to reproduce a blog written by Molly Watt - a young woman with Usher syndrome - on the subject of Apple watches and their potential use for children with Usher syndrome.
Monday, 08 May 2017 19:19
Applewatch for kids
Written by Molly Watt (Molly Watt Trust)
I recently received an email enquiry from the Mum of a 9 year old son living with Usher syndrome.
I regularly receive email from others living with the condition I’m living with, however, this particular enquiry was interesting as it made me really think about exactly how useful an applewatch might work for a child dealing with the challenges of progressive blindness alongside deafness which all too often leads to lack of confidence, often mental health problems and isolation.
I had read a few write ups about applewatch and children but it seemed mainly older kids, old enough to have iPhone’s and ideas of how to use applewatch in school whilst their iPhone’s were not allowed in classrooms, typical kids trying it on but examples of kids still in primary school I have not seen or considered before!
I met this young boy, who we will call ‘A’ when he was 6 years old. A typical lively young boy, full of life and energy. The only difference was he wore 2 cochlear implants and used a little cane from time to time.
‘A’ was coping well with his condition and his confidence was good at age 6, from what his Mum tells me at 9 years old he continues to be a confident and happy child. His Mum had read my blogs about applewatch and thought it may well be very useful to her son, particularly because of prominent haptics.
I thought back to my own diagnosis and how I coped.
Up until my Usher Syndrome diagnosis at 12 years old I too had been a very happy go lucky child. Being born deaf and wearing hearing aids for as far back as I could remember. Deafness was challenging but as a result of great support I was fine with it. I knew my limitations and dealt with them, it was all I knew. I didn't feel too different either as there were other deaf children locally that I knew and was friends with. I had always been in a mainstream school environment and besides often being referred to as the girl with the hearing aids I was very accepted.
Sadly my happy school days ended after Usher Syndrome took my sight away so quickly and from great support at school to a real lack of understanding and as a result very poor and limited support.
This situation resulted in lots of confusion which ultimately led to my confidence being destroyed, I became vulnerable, I didn't want to leave the house as I was clumsy, I walked into things and people. The friends I thought I had either stopped calling for me or became bullies who made my life a misery.
Going out and being a teenager became my worse nightmare as for me to do so I would have to use my cane. I was introduced to the cane at 13 years old, I hated it because it was like a big symbol saying ‘look at me I am blind’. The person who trained me in orientation and mobility was not familiar with me and whether she meant it or not was bossy and insensitive when I couldn't hear her instructions which made me resent having to have her or a cane in my life.
I just wanted to be like everybody else and I did not understand what was happening to me - I now know this series of events was the start of my anxiety, depression and self isolation back then.
I was happy enough when I was with my family and the few real friends I had but life could have been so much easier.
My traumatic experience resulted in lots of things including counselling which together with the best parental support and my arrival at a mainstream college resulted in me re-finding myself and the belief that not only is my life important but that my bad experiences could be used to help others avoid the pitfalls I had experienced.
I want things to be much better for the next generation and it really can be with know-how and the amazing assistive technology available to us, it really is life changing.
Back to the original question applewatch for children - I can visualise some real benefits particularly for ‘A’s age group. I also see two negatives, but I believe they could be worked with or around!
The positives are first:
It is my believe that applewatch can offer continuity in navigating a world that has become or will become more difficult with a progressive sight loss.
Early introduction would avoid the difficulties I had to deal with in coming to terms with the many changes associated with progressive blindness.
A young child could learn very early how to be safe, how to navigate the world using the awesome prominent haptic feature, alongside peers - early introduction of applewatch would actually be pretty cool, other kids would more likely take an interest in how the tech works rather than resort to the bullying and name calling I experienced. This way a continuity of inclusion and confidence would be maintained whilst dealing with a challenging situation alongside peers.
Children like ‘A’ could learn about good communication making full use of prominent haptics, receiving text messages, sending short messages, also receiving haptic alerts, then as he gets older he can remain even more in touch receiving email and social media alerts via his wrist, keeping him safe and independent. I believe this is just the beginning for prominent haptics. I am hopeful more and more will become available to access via applewatch.
Another very important point is ‘A’ can be tracked by his parents /carers so would be as safe as he can be.
Learning to use these skills is hugely important and should result in a continued confidence to maintain the happy go lucky nature younger children have.
Parents will also feel more confident as their children will not just remain contactable via applewatch but also detectable via GPS.
I remember that first night I waited for darkness, I had had my applewatch for 2 days and wanted to put it to the ultimate test.
I am completely blind in the dark, I prepared guide dog Unis, keyed a friend’s address into my iPhone. This friend lives on the other side of town. I carefully put my iphone securely into my backpack and set off completely relying on prominent haptics to find my way.
My parents did not trust the applewatch (they didn't understand it) and questioned me trusting my newest ‘gadget!’ If I’m honest I really wasn't sure if I would get to my destination but desperately wanting it to work and desperate for independence I had to try it. Guide dog Unis has kept me safe since I was 16 years old, she however can only take me where I ask her so for us getting to my destination was a joint effort, applewatch instructions to me via prominent haptics (vibration alerts) on my wrist and me instructing Unis in accordance with the vibrations, worked a treat and we safely got to our destination 20 minutes later. I cannot tell you what that meant to me. I cannot put a price on independence.
Today I can only say thank goodness I was feeling brave that day as the enablement to get around safely has changed my life.
Prominent haptics have guided me safely around the world.
Applewatch enables people to get out and about once they understand and trust it’s unique navigation technology which has very positive effects on health and mental health. For those with poor sight relying on prominent haptics also allows the eyes to rest.
Young ones need to establish these skills early on, there needs to be continuity and some sort of normality in learning such life skills, I think applewatch could provide that. I know I would have felt far better about myself had I been shown applewatch and it been used as part of my mobility training. I was 13 when dealing with orientation and mobility and did have a smartphone, sadly applewatch was not available back then.
This leads me to the negatives:
I can’t quite get my head around a 9 year old having a £700/£800 smartphone to make this all work, however that doesn't mean the skills I mention above cannot be developed.
An applewatch would be far safer, secured on the wrist than a child walking around holding an expensive smartphone
A 9 year old should not be out alone so perhaps an idea might be that a parent/carer has the iPhone whilst the child wears the applewatch.
The second negative is applewatch may be large on a small wrist, however there should be a way around that, perhaps a child sized strap.
The parent/carer could spend time with their child teaching them about the benefits of applewatch, they could learn together. I think this would give both parent and child confidence in both how applewatch works and also how incredibly useful and safe it will make their child’s life as they naturally become more independent.
When technology is your only way forward it has to be a part of your life.
For me it has been the difference between doing something and not doing something and more importantly I am now somebody I want to be rather than somebody I used to be.
Do I think applewatch could help ‘A’ and children with other specific needs? I absolutely do.
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