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.
My son read Molly's applewatch blog to me last year. She made everything sound so easy and to be honest I didn't believe it.
My son kept on and and and on about me getting one as I had become quite a recluse.
I could always find an excuse not to go out, my neighbours helped out with shopping and my son visits regularly.
I have had an iPhone for just over a year and learnt how to use it just by playing with it.
A couple of years ago I was assessed by Guidedogs for a dog but was told I couldn't be considered for a dog until I had some sort of routine as the dog needs to work.
To be honest it put me into a state of depression and I withdrew further.
I was trained to use a cane some years ago but didn't like it and didn't feel I needed it. I was definitely in denial.
Anyway, I had been unhappy for many years. Usher Syndrome has isolated me and I let it.
My son advised me of the project Molly had put together through her charity and he more I read the more I wanted to give the applewatch a try.
I admire Molly, so young and doing her best to live happily and to help others, she is definitely an inspiration to me.
At 54 years old I am not an expert in technology but I'm learning and I quite like it, I have surprised myself with my iPhone, set up my own email and a few apps and games with a little help.
I decided to apply for the applewatch thinking I'd have no chance, as I don't have a regular routine, haven't even ventured to my local shop on my own for probably 5 years.
I'm sure there are lots of people hoping to get an applewatch and Molly Watt Trust is a small charity and fundraising isn't easy.
When I got the email to say I had been approved for a watch and after a few formalities it would be sent to me I was in shock, I hadn't expected it especially as at this stage I knew MWT have asked for feedback to help with fundraising and I asked to be anonymous - it wasn't a problem.
I received my applewatch in January, it was like Christmas. I charged it and set it up on my own, I fiddled around with it, sorted out the accessibility settings and changed the faces. My son did help me with a few apps and applepay then he helped me set up a route on maps for me to walk on my own with my cane. He was more excited than me.
It took me 2 weeks to actually walk that route, I had sleepless nights thinking about it. I was fighting with myself, I wanted to do it but I was frightened and hated the thought of being seen with my cane.
I planned the walk over and over until I finally took a deep breath and just did it.
The route was to my local shops, just over a mile a way.
At first I was really slow and apprehensive but the further I got the better I felt, the watch guided me with taps on my wrist for left and right. I made it to the small supermarket and I felt so adrenalised I wanted to walk and walk. All of a sudden I didn't care if people were looking at me, I felt confident, I felt great.
I decided to go in the coffee shop next door something I'd never have done for fear of knocking something over, I walked in, it was quite empty, I ordered my coffee and the young girl asked if I wanted to pay with my applewatch, I stretched out my arm and beep, done.
I sat down and my coffee was brought to me.
I couldn't believe myself, I was smiling to myself for the first time in a long time, I had done it and I did it for myself.
I text my son from the coffee shop, he didn't believe me so came and met me. We both cried, silly I know but a big deal for me.
My son took me home and we talked about technology and how it can change people, enable people, just amazing.
That was the first time and now I go out everyday, I feel so much better for it. No longer a prisoner in my own home, I can get from a to b fairly safely. I do get a bit stressed if it is busy so I avoid busy times.
For me this is just the beginning, I will contact Guidedogs for the blind again perhaps in the summer when I can say I go out regularly, we will see.
For now I just want to thank everybody at Molly Watt Trust for making this happen and for Molly for being such an inspirational young lady.
I will write again soon.
Recently I was invited to appear at the Sense Awards at Kings Cross London.
I had been nominated by friends and colleagues from the Usher Syndrome and RP Community, I have Usher Syndrome type 3.
I was absolutely overwhelmed that people thought enough of me to nominate me .
As time went by I received an email from Sense advising I had been shortlisted in the category for Deafblind Person of the Year, I was in absolute shock.
I then spoke to my partner and friend, both like myself have guide dogs.
In typical style we would attend the awards and tackle this head on.
Being Scottish and living in Scotland, we would travel down and tackle London and all it could throw at us, head on.
It was decided Johnny and I would fly down together, with our guide dogs Jason and Bronte and my partner decided she would love to attend the Guide Dog Awards two days later so she would follow us down by train with her guide dog Eva.
We set about getting tickets to enable us to attend the event, priced accommodation and found a bargain deal, however, it was about 6 miles from where we really needed to be but between us we have great communication skills, we are all oral.
We initially tried to book trains but it was far too expensive as we would be travelling from Glasgow to London surprisingly it was cheaper flying with Ryanair, the journey by plane was just an hour .
We did our homework checked all was okay travelling with our guide dogs first and booked assistance on the flight.
Our journey began on the windiest Sunday night in Scotland for many a year with Jason my guide dog and I making our way by train to Glasgow to meet Johnny who has no sight perception at all and his guide dog Bronte.
Lyn and her guide dog Eva would travel down to London by train to join us on the Tuesday.
Johnny and I and our guide dogs set off, had a bite to eat on the way and got the airport bus to the airport we were booked in at the holiday inn express .
We checked in dropped our luggage and went to the airport to check we had booked in correctly and we had.
At the hotel we were up at 6 and had breakfast, it was self service not ideal, but the staff insisted we sat down while they waited on us, they were very impressive.
They then escorted us across to the airport. This was brilliant as you all know sometimes it's difficult to get assistance or even accept assistance.
We then checked in with Ryanair they who were very professional and after check in escorted us through customs and made sure we were fine, checked our boarding passes and then boarded us first, we felt like royalty.
Neither of the guide dogs had flown before and both behaved impeccably.
We were collected at the the other end by assistance, fair to say we were very well looked after.
We actually bought bus tickets on the flight and were surprised that the airport staff escorted us to First National Coaches. Once again we were greeted with a smile at the bus depot she helped us so much she got us our Oyster Cards and showed us how to use them but also escorted us two streets away to get another bus.
Once on the bus the driver was notified of our predicament and he told us he would tell us where to get off even though it was a ‘Talking Bus.’
This is a huge thing at the moment, I have been involved with the guide dogs campaign to make this happen, this really is a must it takes the stress of travelling away even for sighted individuals.
I had also researched an app called Tube Tamer and downloaded it onto my iphone, it took us exactly where we wanted to go in London, advised of details of every train, tube, bus and how on foot we could navigate the City.
As we got off the bus I checked the app, pressed the map and it directed us to the Ibis Hotel, Styles Custom House . Sure enough we walked round the corner and there it was, fantastic app.
We proceeded to check in, the staff, as usual were in awe of the dogs.
We got up to the room and laughed how on earth did we manage to get here?
All I know is we did it and it was amazing.
Next day Johnny, me and our guide dogs had to find our way to Kings Cross and to the Sense Awards.
After a great breakfast, made easy by the amazing hotel staff I checked my app Tube Tamer, fortunately I have enough sight at the moment to access this app, Johnny would have struggled as he has no sight.
At the tube station the Transport for London staff could not do enough to help us get to where we needed to be with our guide dogs and this was the same every time we used the transport system.
Without a doubt I would recommend Transport for London for their outstanding assistance.
After a couple of changes and a short walk we reached our destination.
We had made it, one completely blind man, one deafblind man and our guide dogs had not only got from Scotland to London but also from one side of London to the other, quite an achievement in itself.
We were shown to our seats. There was a buffet lunch, not ideal for us in this environment but thankfully there was assistance so we were able to stay in our seats.
After lunch were the awards, people like myself nominated and shortlisted for various achievements.
The last of the awards was the one I had been nominated for ‘Sense’s Deafblind Person of the Year’ each nominee had achieved great things this past year.
I felt pride at being nominated, at getting from Scotland to London, from hotel to venue.
I was a runner up for the Sense Award that day, however, I felt like a winner just by being there, me, myself, my guide dog and my best friend who just happens to be blind too!
As Colin said we made it and it was none stop laughing.
The rest of the day we familiarised ourselves with the hotel and took a walk around the local area finding shops along the way to get our provisions for the night.
It was like an adventure, a new environment with new surroundings for us and the dogs all part of the adventure was successfully finding a Tesco extra!
That evening, after we had a shower and relaxed for a little, we went downstairs for a lovely meal which concluded our day.
We went to bed early so we could be up bright and early for the interesting day ahead of us.
After an enjoyable sleep and a substantial breakfast we were ready to face the day ahead.
This day kicked off with a trip to a local park which we found on our travels allowing the dogs to have a little run and play. This was great as it gave the dogs a little down time for all their hard in this big bright bold new City, and with that done off we went on our next adventure.
On and off trains and tubes always with assistance which we extremely appreciated and are truly grateful for making our journey that little easier.
A massive shout out to Transport for London Staff who were a great help.
We finally reached our destination 'Kings Cross' to meet our dear friend Lyn.
As we were a tad early we thought a little wonder would be a good idea, so we, myself, Colin, Bronte and Jason toured the streets of London. We found ourselves at 10 Downing Street, which was truly astonishing, standing outside somewhere so well known and a place you'd see on your television.
Our journey also took us to Big Ben that was breathtaking and Trafalgar Square which is lovely at this time of year all decorated up for The festivities. Then our travels came to a stop.... just for now as we went to meet Lyn.
Both of our dogs started to get excited while we were waiting for Lyn and that's how we knew our friend had arrived.
It is something I'll never forget. Being in a new big City with your two best friends it's honestly the best feeling ever.
The three musketeers headed back to the hotel using the great transport system once again.
We had a pretty chilled out night dinner and a few drinks as we were all quite tired after the busy day and Lyn with her travelling.
Waking up the next day with a migraine and dry mouth I regret those extra drinks I had the night before but nothing could solve it like a nice warm shower and a big plate of food to set me up for the day ahead.
This was an easy relaxed morning as we were all still delicate from the night before. We got all suited and booted for the big occasion 'The Annual Guide Dog Awards' which was held in Hilton Park Lane which was a very high end hotel.
We arrived at the venue in plenty of time and on arrival we were greeted with champagne and were assigned our seats. As we proceeded to our seats we walked along a red carpet passing through an area the press were using, we felt like royalty which is quite funny as we were in the same city that the Royal family live in.
We had a 3 course meal which was lovely, but don't ask me to remember what we ate, let alone spell it!
The evening was a blast we had great fun watching the awards take place and watching the auctions. An immense amount of money was raised. If we had to take a trip to the little boys room there was always someone on hand to accompany us there. The night came to an end and we had fab help getting from the event to the train station.
We had met some great people, experienced great things and had great fun.
Another day under the belt.
One more day ahead in our story which Lyn will take up telling.
As Colin and Johnny said we have had a great experience so far but the day I had been looking forward to had arrived. Thursday was TOURISTEE DAY.
I was so excited. We got up and had breakfast early so we could make the most of the day. Heading to the subway about nine thirty.
The service we had become so used to in the tube and trains continued, amazing system and amazing staff, Transport for London.
We got off at Westminster Station.
I needed to go to the ladies, Johnny was standing outside waiting for me and there that moment he heard Big Ben chime 10 o’clock. WOW, he couldn't see it but he knew it was right next to him!
We then headed to No.10 Downing Street which was completely different looking to me from the tv.
I didn't realise there were gates at the side side. We took some photos and then walked on.
We headed to Nelsons Column and Trafalgar Square. This was where I so wanted to go to get a photo at the Christmas tree. I must admit the tree was probably a bit disappointing to me but loved the fountain just wished I had a Scotland scarf and that I could go in for a swim - haha.
We then walked up The Mall where the Royals all come down in their finery. It was such a thrill just to think we were in the same place.
We arrived at Buckingham Palace as a big posh car left with police escort.
For a second I thought they had heard the ‘Three Blind Mice’ were in town!
We walked through the park giving the dogs a chance to relax a bit. We did have a wee bit of disorientation in here and had to stop a few people for direction.
I will never listen to another person who says Londoners have no time to stop for you. Everyone stopped helped and chatted. We met so many amazing people who went out of their way for us. Instead of only giving direction they would just take us. Well over our expectation.
Thank you London folk.
This is when Colin introduced me to Jane Watt who we met for lunch.
We went to Harvey Nics.
Johnny and I took our metal diet cola bottles home and took a photo of my lunch, sad but true.
It was such a lovely time and I learnt so much more about the The Molly Watt Trust Charity and the hard work they are putting in to make a differenced to those with Usher Syndrome.
Thanks for a lovely lunch Jane.
We wandered about for ages trying to find grass for the dogs after that. Not a lot found that area but with Jane’s help we got somewhere and headed to shop at HARRODS.
Jane guided us round safely and we came out with 3 HARRODS carrier bags from one of the managers. Such a lovely experience although the dogs were on tip toes making sure we knocked nothing over.
We left there to go back to the hotel getting the same attention from the staff at London transport.
We visited the local shops for nibbles for the room and had a quiet night with tea and pot noodles as we were all totally shattered.
Friday came and it was time to pack and get ready for home.
I was excited as today would be the first time Eva would be on a plane.
Knowing how well Bronte and Jason got on the first time helped me stay calm.
We took time with our breakfast and said cheerio to all the lovely staff who had run after us all week. We checked out and headed to Stanstead.
We were definitely more confident on the tubes and managed a couple of parts on our own but got the help we needed.
Colin’s app Tube Tamer was an amazing help to us the whole week.
We got on the bus to Stanstead we had well and truly left. On arriving at the airport we asked a workman where Ryanair was and he kept pointing and trying to tell us where to go! Thankfully his workmate came along and started laughing and literally took us where we needed to go. I bet he gave his mate some ribbing!
The staff printed our boarding passes off for us after which we went for something to eat.
When going through
security we all got frisked and they emptied my suitcase I was mortified all my dirty underwear!
However got through and were taken to the plane first. We had a very good flight home and Eva slept most of the way. We were treated well in Glasgow Airport too. The staff were helpful took us from the plane right through to the bus to go to Central Station.
We were back where we began, our adventure was over but we were back with more confidence in our abilities and our amazing Guide Dogs.
Thanks to everyone who helped us.