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.
San Francisco had been on my long list of places to visit and I was lucky enough to go on a girls only adventure with Mum and my younger sister Lily.
Going away and out of my comfort zone can be very stressful, whether I am alone, with Unis or with others.
To deal with the anxiety I often feel I use my travel experiences as a mission to find who and what is accessible in my world.
Whilst I’m concentrating on the good, bad and acceptable it gives me something to think about rather than feel anxious.
Our journey begins at Heathrow Airport and our flight with Virgin Atlantic. Virgin were advised I am deafblind on booking and that safety instructions in large print be made available. They were also advised I am most comfortable to board first to avoid the crowds which are uncomfortable.
I was escorted to the aircraft, Mum and sister following behind. I was introduced to two staff and shown to my seat where I was made comfortable and provided with safety instructions in both braille and large print - impressive.
The nearest toilets and emergency exits were pointed out, not too far in front of me and button to call for assistance.
Very good, it would have been good to have the food menu in larger print as I did have to ask for help in choosing my meal, handy to have Mum and sister to rely on here so a little room for improvement but not bad.
It was a long journey, almost 11 hours.
It wasn’t too bad as we arrived in a warm and sunny San Francisco, 8 hours behind UK time so quite tired but adrenalised to finally be there.
This is the main reason I did not take Unis, long journey, time difference and we were only there for 6 days. It would have been a lot to ask of her so she stayed home with my Dad and had a mini break from work!
Unis always gives me a hard time when I leave her, sulks for days when I get back, it was for the best, she just doesn’t realise it!
I was disappointed with SFO Airport, it did not have an assistance lane in the arrival hall. I find crowding very stressful, especially when I am in unfamiliar surroundings, its very disorientating.
I was glad to have Mum and Lily to guide me.
I was really happy to arrive whilst it was light so I could appreciate the views from the taxi drive on our way to our hotel at Fisherman’s Wharf.
Check in was pretty painless and we were soon in the lift to our room.
A nice room but it was so dark, dark walls, dark furniture, and dark blinds. Thankfully the bedding was white so I could at least see the beds ok.
There were lots of lamps around the room but not a ceiling light so the dreaded uneven light that my eyes hate, a kind of dusky light.
I had several bumps and bruises from that room set up #ushersyndrome #issues.
I really liked the area we stayed in, it was quite easy to get around by public transport using my applewatch.
At the core of my visit was a trip to the Apple Campus in Cupertino which was a bus journey followed by a train trip. Pretty easy and pain free travel using my cane.
I was impressed with the first bus stop I needed, it had both visual and audio description of which buses go where and when. I didn't find this function at the train station but did find a very helpful employee who showed me to where I needed to be.
Yes, I am the deafblind one but I like to be as independent as possible so Mum and sister let me find out what I need to and of course if I need help they are there.
The train was great, really clear audible information from what sounded like a real person rather than the recorded voices on public transport in UK.
I liked to hear a real person sounding cheerful announcing each station as we approached it.
We disembarked at Mountain View and were met by a cheerful English driver who drove us to the Apple Campus. It wasn't too far.
Having been dropped off the driver made sure we were okay checking in and met with a couple of the staff we were meeting.
I was a quite overwhelmed to be visiting the Apple Campus, it was all quite surreal.
We got lunch and sat out in the sunshine speaking to various people from various of the teams based there and of course we discussed my http://www.mollywatt.com/blog/entry/my-apple-watch-after-5-days was an amazing experience for me.
We got to look in the newly refurbished Apple Store, I really like the shop, the lighting was warmer than lots of shops here in the UK. The new large screen was awesome. I also particularly liked the new shelving of the accessories, right height and so easily accessible, perfect.
Lastly a meeting with those who wanted to meet me, my last chance to talk about accessibility and how I and people like myself use apple products.
We were at the Apple Campus for the afternoon, time flew, it was an amazing experience, a real WOW and something I’ll never forget.
Taxi journey back to Mountain View and the train back to the City in the dark!
The train was well lit and busy but worked fine for me.
The bus journey back to Fisherman’s Wharf was straight forward once I had found the bus stop, this was not ‘Usher Friendly’, at least not the way it is here in the UK.
Bus Stops in San Fransisco are not always obvious like in the Uk. Some do have proper bus shelters, some appeared to be just poles with small numbers stuck on them or bus stop written on the road. Thankfully I wasn't alone or I would have really struggled, particularly in the dark.
On the whole public transport in San Francisco is good, however I found road crossings are not ‘Usher Friendly’.
Here we have ‘zebra crossings’ which have flashing lights and they're very obvious, even to people like myself in San Francisco there are some pedestrian crossings which I understand however there were also crossings indicated by two thick white lines about 8 feet apart, however these were not obvious to me and I wasn't sure when it was safe to cross or who's right of way it was. I was confused and Unis would have bee too.
We went shopping in San Francisco and I know all my Usher friends in the UK will be interested to hear that both Hollister and Abercrombie and Fitch had decent lighting, not the awful darkness we endure in their shops in the UK.
I used my cane a lot in the City centre and on the whole felt very safe. We navigated around on foot to the various galleries and places of interest using my Applewatch.
As we were only there for a short time we decided to book a one day bus tour around the City. This was a disappointment as on boarding the bus I advised the driver of my deafness, I was not offer a loop system or anything else to give me access to the onboard guide. I definitely missed out on the audio, I relied on Mum and Lily to fill me in on what was being said. I’m pretty sure we all missed out because of that.
Fisherman’s Wharf was a buzzing area, we walked there and enjoyed some sightseeing and a boat trip around the bay, under the Golden Gate Bridge and around Alcatraz. It was a beautiful sunny day and I was lucky enough to actually see sea lion’s swimming alongside the boat. I felt really lucky to actually see them as each time Lily or my Mum pointed to them and I looked they were gone. I felt so sad but it was almost as if they knew I hadn't seen them as they popped up right in my field of vision just before we docked, it completely made my day.
I found San Francisco to be a friendly place and I would love to return, see and experience what I missed.
I know people with Usher Syndrome that live there who had hoped I was doing a public presentation, sadly not but maybe one day, fingers crossed.
We left our hotel with heavy hearts but I was looking forward to being reunited with Unis.
The check in with Virgin Atlantic at SFO Airport was straight forward and thankfully security not too stressful.
Again I was boarded first and given accessible safety instructions and made comfortable. Virgin were very good.
Now home in a very chilly Berkshire where Unis has stopped sulking and its back to normal, that said my 6 days in San Francisco have given me memories I’ll never forget.
Besides a beautiful City I got not just a visit to the Apple Campus but also to to meet and speak to some amazing people, a real WOW experience and a big thank you to those who made it happen.
So I've now had my Watch a month and the best way I can describe it is 'Effortless.'
When I first got it all in its beautiful packaging it felt like Christmas again, all thanks to the Molly Watt Trust's GlobalGiving Project.
I was chosen as one of the first to trial this idea and wow I'm very thankful!
I Have Usher type 2 so born partially Deaf and now slowly losing my sight due to Retinitis Pigmentosa, that is Usher Syndrome.
I'm pretty much the worst for missing calls or notifications and emails simply because I don't hear the pings and don't see until I check myself usually just before bedtime.
Well since this lovely piece of tech came into my life that is now a thing of the Past....
'Haptic's where have you been all my life?'
So when I first got this all set up, I adjusted the font and display and synced to my IPhone 6, I turned Haptic's up and volume down ( I'm higher tone deaf so no point for me as I wont hear it) I was well away.
I downloaded some apps such as my Bank and Email also Around Me so I could use it with Maps to use as a walking Sat Nav, also BBC news app.
All of these worked well for me the At a Glance I found really useful as well as the Call Feature as when I'm on a bus or the school run it isn't ideal with Guide dog in one hand, child in the the other so now in an emergency with just a quick click and a tap or even a 'hey Siri Call...' at my wrist I could call for help without being at risk. That was a huge biggie for me.
However for me there is one very big FAIL! It is not the fault of Apple or the Applewatch but my hearing aids, they do not work with Bluetooth, no connectivity so I can't hear directly to my ear so I found myself holding my wrist right up to my ear looking abit 'James Bond esk' but not a great feeling trying to juggle everything child, dog and school bags it was abit of a pain but as I say not Apple's fault but the Oticon spirit Zest hearing aids supplied by the NHS so no perks which a real shame as I feel I could probably gain a whole different view had I had the right equipment.
Any way a month down the line the applewatch feels great it's amazingly light and easy to forget it's on my wrist until I get the helpful Haptic's reminder of something in my calendar or emails, and even to navigate to somewhere new, very useful In busy town centres when I just need to go from A to B without scanning around which causes terrible eye strain and headaches, Applewatch has helped stop this, no more scanning just relying on a simple tap or taps on my wrist enabling me to simply direct my guide dog left or right accordingly.
Pretty awesome and effortless for me, my daughter likes the drawing bit in the contacts with those who also have the watch she thinks its magic and cool.
I know I have a lot more to learn about my Applewatch and I'm sure in the coming months I will have more to report.
I'm feeling more confident and independent and feel with this technology and my guidedog I can become ever more independent, maybe a part time job soon.
The only snag I have are these 'prehistoric' hearing aids. Having hearing aids with full comaptibility would be absolutely awesome, I guess a girl can dream!
That said I love my new watch, it is more than a watch and whoever developed Haptics - Thank you life is definitely a little easier.
I want to say Thank you to to the MWT Global Giving project for this awesome gift!