Slovakia Bound

By David Wilkins

It’s a time old cliché that a letter or an email can change your life. In my case the big change came by a Facebook post on a Norrie Support Group in June 2016. This post welcomed Tamara from Slovakia to our happy band. My first message to her was a general hello, and welcome to the group.  I’d never imagined that in March 2019, I would be sitting on a plane about to head for Slovakia to pay her family a visit.

Tamara and her husband Peter had a daughter an absolutely gorgeous baby called Julia, who has Norrie Disease. Upon getting to know her over Facebook, we soon were discussing what it was like to be a mum to a child with Norrie. Julia was their second baby but the first with Norrie, and as is so often the case the issue was that no support was being offered into what Julia might need and how her mum could motivate and play with her.

The only answer I could think of was Julia was still a baby, meaning you played with her like any other baby but stimulated her through sound -talk to her a lot, giving her lots of opportunity to encourage movement and noisy toys are a must. The good signs are she listens to a toys that play music or make an interesting sound, but always remember that even if she can’t see, she still a totally beautiful and ordinary baby (look at the pictures and you’ll see it’s true.)

Things developed later in the year. Tamara and Peter brought Julia to the UK for some treatment. So on a whim I asked if they would like me to visit. Following a chaotic trip to London involving a disappearing wallet, the loan of a credit card and the railway staff forgetting to put me on the right train, I made it. I spent the afternoon with an amazing couple and a totally adorable baby whom was asleep in my arms. She then decided when she was awake, that only mummy was allowed to hold her.

In all honesty I felt a fraud, I’m not a parent, and don’t know what parents need, but could assure them there was every reason to be confident.

Hearing could be an issue later on, and bringing her up wouldn’t be easy. But what did that change? There was every reason to believe she’d grow into a very intelligent, very talented and very good looking young lady who’d make them both very proud.

Almost two years later my plane touched down in Bratislava the capital of Slovakia. Tamara and Peter had very kindly offered invite me for a couple of days. So alone and with no supporter in tow, two sets of clothes and a toy for Julia (don’t forget that whatever you do!) I travelled to a part of Europe never seen before for two truly unforgettable days.

The atmosphere of Bratislava reminded me of ST Peter Port Guernsey; where I spent three happy months working for the BBC. It had the same small community feel to it, and that the city was a place where you could find most things just a few blocks away. In two days I fell in love with the potato pancakes with sour cream on them, thanks Peter. I think I ate about twelve of them, and had the famous Slovakian sausages with mustard for breakfast.

Day 2 included a very interesting afternoon.

I was there of course to see Peter, Tamara and Julia. But on Saturday afternoon Tamara had arranged for me to speak to a group of families from Slovakia. Their kids had Norrie too, and Tamara had got them all together so I could tell my story (somehow it kept them awake) and to answer some questions. I really enjoyed the day, although poor Tamara had to translate what I said into Slovakian, which was not easy for her. She had to bring in Julia’s godfather Michael to lend a hand.

Again, I felt a bit inadequate, but I did say I wanted to be a Norrie ambassador and the families all seemed to really like having me there for a chat. The question I got most frequently was “why won’t my baby go to sleep.” Ah, do I hear an understanding murmur for all parents reading this? Thought so, because this seems to be a problem the world over. And the answer is that you can’t eliminate this problem completely, because as the baby has no light perception they don’t shut down at night. The best solution is a regular routine and bed time, and if that isn’t working, use melatonin as well.

They asked me some really good questions, and came across as a wonderful group who’d thought carefully about what did and didn’t work. It’s also great that although they were not given much support by authorities in Slovakia they weren’t prepared to wait for that to start, but got going themselves. Working to make sure their children go to normal schools and integrate with sighted kids from an early age. But being aware that often because teachers can be or uninformed, they need to do a lot of the pioneering work themselves.

They are very interested in hearing from or teaming up with the Norrie Disease Foundation here in the UK.

Julia playing with the toy I brought for her. After an afternoon like that, no wonder we all needed a nip of Slovakian plum brandy, and it’s quite nice stuff.  And what of Julia I hear someone ask?  She’s still a very adorable baby, who’s into experiencing new things. She adored her new toy (the image shows Julia playing with the toy I brought for her. She is sitting on her mums lap exploring the bells on the toy and I’m listening next to her)

But Julia still refused to let me near her.  Each time I tried, she instantly wanted mum back.  Proof that Julia will be a very bright kid having worked out mum is more interesting than me.  indeed I leave you with the picture of Julia on my lap, just before she changed her mind. Cheeky girl.  

PS, since writing Tamara and Peter took Julia to the US for eye surgery.  To their delighted it turns out that Julia has light perception in both eyes.  She can now say hello, goodbye, mum and dad. She  also has a swing (she loves to swing) and is trying to sing as well.

 May we see them in the UK very soon.  

Cam

Cameron’s smile – my wonderful new bed

I came home from school to find my new bed has been delivered.

I used to have a Kinderkey cot, with 6 foot enclosed padded sides, but due to my development over the past year, we decided I was now ready for a high low floor bed.

This will help my independence so much, being able to get in and out of bed all by myself, and being able to play and chill out in my bedroom freely.

The bed goes right down to the floor for sleeping, and it also raises and tilts for changing and feeding.

We will also be adapting my bedroom door and installing video monitors to make it as safe as possible for me in the night.

I love my new bedroom so much  💙

I hope I manage a good nights sleep in my new bed this evening.

Cam and Carla

Cameron’s Smile – Don’t be sad

We can not change the cards we are dealt in life, Just how we play the hand.

I do not see a disease or a condition when I look at you.

I do not see a disability, difficulties or problems.

I see your soul. A happy, carefree, determined, fearless, clever soul who has opened up my heart to a love that I never imagined.

Don’t be sad that I am blind.

Im far from sad.

I didn’t lose my sight.

I was born without it and I will never know any different.

You don’t need eyes to see the beauty in the world.

Everyday I sense it.

I touch it, I smell it, I hear it, I taste it.

I feel love, happiness and joy every single day.

The challenges I am sent make me strong and ready for the world.

Don’t be sorry I am blind.

You do not need sight to have vision.

The Norrie Disease Foundation funds animal workshops – visually impaired children may have little opportunity to touch and feel different animals and therefore, compared to their sighted peers, may have a more abstract or less realistic understanding of animals.

Cameron and his sister Megan

Siblings Are Very Important!

Dear Sibling to a Child With Special Needs, Let Me Tell You Why You’re Amazing.

Hey there,

I heard you’re the sibling to a child with special needs, and I wanted to write you a letter explaining why you have a one-up on life. I know your life might seem hard or different from your friends, but trust me, you most definitely will be more prepared for this life than anyone else. Let me explain…

I heard you deal with more than any child should. Your parents spend a lot of time away from you. You know they’re taking care of your sibling, possibly bringing him or her to the doctor. Maybe your sibling is admitted in the hospital often; your parents might be on the phone taking care of insurance business or even physically caring for your sibling. I know, my friend. You see this more often than not. You see the love your parents have for your special sibling, and it’s being embedded into your heart. You see the patience they exhibit when caring for him or her, and it’s being buried into your soul. You see that your parents never stop trying to get what your sibling needs, and it’s being ingrained into your mind. You see your parents exhaust themselves so your sibling and you are well taken care of, and you’re learning from this. You may not know it, but all of these little things are teaching you traits of how to be an amazing person.

I’m certain that being the sibling to a child with different needs is a struggle. I know you have those moments where your heart stings with jealousy, where you’re worried sick over your sibling. I know you have those moments when you get mad because you can’t go to all the birthday parties you want to. All of those times are totally understandable. You have a right to be upset every now and then, but I can bet that you can think of some pretty cool things you have in your household that your friends don’t. How about all the cool equipment your sibling has, huh? I know you’ve climbed into that wheelchair or played with his super cool assistive technology toys. How about getting to see your sibling reach a milestone and that proud feeling that overcomes your body? You get to experience a friendship like no other. Your sibling completely and utterly trusts and loves you with a love that can penetrate the coldest heart. They look at you with those beautiful eyes and know you’re there for them no matter what. The bond you have is indescribable. You’re their sibling, their friend and their protector. Your sibling might not speak verbally, but we both know your hearts together carry on conversations us adults could never possibly understand. And I tell you what, we’re so extremely jealous.

Did you know your parents watch you and your sibling’s interactions on a daily basis and their heart literally wants to burst out of their body with pride and love? They see everything you do for your brother or sister. They notice when you walk by and give them a quick kiss, stroke their hair or give them a hello. Your Mom and Dad love to witness you sticking up for your special sibling or when you go out of your way to make sure he or she is included in everything. They quietly observe you as you help with therapies, put oxygen masks back in place and hold hands during tests or doctor visits. Your parents recognize every time you perch yourself on the counter to help prep medicines or bring them a diaper, a syringe or whatever else they need. You do such an amazing job helping your parents. It surely takes a wonderful little boy or girl to do what you do on a daily basis. I’m sure they tell you thank you, but sometimes if they don’t just know they are beyond thankful for you.

But most important of all, my dear one, the reason you are going to rock this life: You know true love, you know true heartache and you know what’s truly important. You have lived a life that takes a strong heart and a strong mind. You will mature much faster than your schoolmates (don’t be too hard on them), you’ll exhibit compassion that astounds others, you’ll know more about healthcare than 95 percent of adults you pass on the street, and you will most definitely have a wicked sense of humour that will enable you to keep life joyful no matter what. When you were introduced to your sibling with complex needs for the first time, that moment in time is pinned in the stars, for it was then that your destiny was determined. You will be an awesome human being and you’re going to change lives for the better… all because you were the sibling of a child with special needs. Rock on, my brave friend.

All my love,

The Momma of a child like you and your special siblings

Credit Katie Corkern.

The Norrie Disease Foundation raises funds for family days to provide peer and emotional support to the whole family. These are at the heart of our activities and are so important to the children, young people and adults affected by Norrie disease and their parents and siblings, to be able to speak to others in the same situation as themselves.

Raising Awareness Of The Impact Of Dual Sensory Loss

Rikki on stageI have Norrie disease which is a very rare X-linked genetic condition which causes mainly boys to be born blind or severely sight impaired. The majority of sufferers also experience progressive hearing loss. Other secondary symptoms can also include autism and cognitive impairment.

I first noticed something was wrong when I started getting severe bouts of tinitis in my left ear back in about 2001. It would hang around for four to six weeks, then disappear as though nothing had happened. I had no idea about steroid injections back then and I still have no idea what to tell a doctor about it if I were to try it. I just know that steroids apparently can have a positive effect.

I kept battling with these bouts of tinitis until 2005, when I had a severe bout that just wouldn’t go away. I was training to have a guide dog at the time and the episode hit me right at the time we started training. My hearing was fine the day before, then it just came on all of a sudden.

It was early in 2006 that I received my first hearing aids. The sound I remember most hearing that I hadn’t heard in a long time was my wife at the time, crunching on her cornflakes! It was quite a novelty back then!

My hearing continued to deteriorate, and I started to learn the caveats that go with hearing aids, such as the maintenance of tubing, wax blockages and all the things that can stop a hearing aid working to its full capacity. I had several blockages of wax in my ear itself and I played around with several different ways of dealing with it. In the end I found that just regular check-ups at the doctor was the best way to avoid complete blockages, no matter what cleaners you use. I even tried just rinsing my ears in the shower every night, but the doctor reported when he cleaned my ears out that mold had grown inside my ear! So that didn’t work either.

Then came the hassle of learning how to use the phone effectively as my hearing deteriorated to a point where I could no longer use the phone with my bare ear. I started using telecoils, but they just weren’t as effective for me at first as they should have been. I have always participated in a lot of teleconferences both for my employment, and for voluntary activities, and this work became extremely difficult. Then one day, I just decided I would try the phone in my left ear, and surprisingly, I got a much better result despite my left ear supposedly being the worse side. Each of my ears sound different, but my left hearing aid and telecoil gives me a much fuller sound on the phone than my right for some reason.

Then I discovered the wonders of Skype, good quality USB microphones and good quality headphones. Skype has made a huge difference to my life! So too has the IPhone and its very good quality sound through headphones, particularly when using Skype or Facetime. These tools have made an immeasurable difference to my level of stress when communicating with people in teleconference situations. It’s much easier to follow fast moving conversations. Doing this with one ear on a phone is very hard work.

I would like to focus for a while on hearing loss in the context of being a musician, and also being totally blind. I might diverge into other areas as well as I writet this, but hopefully, that will add to the information you are looking for.

I worked as a producer and session musician in recording studios between 1998 and 2004. I loved the work, and in the few times I’ve had studio work since, I’ve found that I can still cut it as a producer and player in the genre that I’m familiar with.

To be honest, the loss of being asked to play and record by other musicians has been the biggest source of grief to me in relation to my hearing loss. During the time I worked, I dealt with the tinitis that I referred to earlier, all the time trying to hide that I was having any difficulty. Amazingly, I received a Facebook comment from my good friend Michael Fix recently that when we were mixing an album, I was sitting on the lounge in his studio at the back of the room, which he said was the worst spot for acoustics in the room. I was telling him what I wanted raised or lowered in the musical mix, and he said I got everything spot on! I don’t know whether that was during one of my bouts of tinitis, but without attempting to boast, it would have been at the height of my musical abilities that I did so.

Another comment from someone I worked with in the late 90’s stated that I was able to pick a note on a bass guitar track that was a semitone out from where it should have been, so it was disastrously out of place in terms of a commercially viable recording. Nobody else picked it.
That gives you an idea of the sensitivity in hearing that I once had. My vocals when I sang were almost always perfect. Takes on vocal tracks I did needed minimal adjusting or dropping in. I was master of all I did vocally, and I could tell an artist exactly what needed fixing in their performance and how to do it.

Live work though, was a different story. From when I was a teenager, I needed to be amplified really well on stage so that I could clearly hear what I was doing without any doubt. I dreaded playing on sound systems that had bad onstage monitoring, because I was always doubtful of what I was singing. This tells me in hindsight that my hearing was deteriorating from much earlier than I realised it. Other people didn’t care how good the foldback speakers were on stage, or indeed whether there were foldbacks there at all! They just performed effortlessly and worked with whatever they had without complaint. I envied them!

It was in 2008 that I eventually had to give up singing professionally. It happened suddenly. A month or two earlier, when my wife and her family came to see me sing, I was spot on. But in the intervening time, my hearing had deteriorated to a point where I could no longer tell that I was on pitch or not. I was wearing hearing aids by this stage, and in the few months before, I had experienced episodes where everything seemed to blur, and I could no longer tell what key the song I was about to sing was in. It was embarrassing, because I didn’t know what I was doing at all for a while there. But I kept trying to cope with it until eventually, one of the staff at the club I was playing at asked my wife why I was not singing in pitch. I knew then that it was time to quit. It was impossible to hide my difficulties anymore.

This was a big loss in income for me, but also, a big loss in terms of my identity as a professional musician. I have worked on and off over the years to try and get back what I had. Sometimes I think I’ve got it! Then I start to pick up faults, or hear from someone else that I’m off key, and I realise that it won’t ever be the way it was, when I just didn’t have to think about what I was singing. There will always be that margin of error, big enough that I can’t get away with it.
Playing can be flurry and has its share of doubt as well at times. Not the playing itself, but the worry that I’m hearing the chord changes in a song correctly if I’m trying to learn it to play behind someone else. I was involved heavily with a church for five years, and being a part of their music team gave me the opportunity of developing the skills to hear new music properly. I need to hear things close up through headphones, and I need new material in advance so I can make sure I’m hearing it right. This opportunity was there in the church. Unfortunately, I lost my position on that team in the church due to doctrinal reasoning let’s say, following the splitting of my marriage.

In later years, I actively pursued the music scene and tried to get known in Melbourne where I lived for three years, but I never got included in any projects. I was honest about who I am and the challenges I experience, and said that if I have material in advance, I could learn it and be professional. But it didn’t work. Sometimes, if there was a piano in one of the pubs they were playing in, the local musicians would get me up to play some old standard stuff, but they never asked me to be involved in upcoming gigs or in recording new material. I don’t know why. This is what causes me the most grief about my hearing loss. They obviously doubt my ability to be professional, and that is what breaks my heart. I am a musician by nature. I cannot change it. I’ve tried, but it doesn’t work. I always come back to it.
I have ideas about how to be involved in the music industry from a different perspective. I just haven’t had the time or energy to pursue them due to my paid work. But I will get to it, and I am determined that once again, I will become a valued member of the country music industry in Australia as I once was.

My return to Brisbane has led to my involvement in a band which specialises in original material, headed up by a friend of mine who is also blind. Along with Michael Fix whom I mentioned earlier, David Truong has unreservedly given me the opportunity to be part of a developing band. I really appreciate being able to keep my hand in and my skills up! Today I recorded some acoustic guitar parts on his upcoming single in the studio, and it was just as rewarding and natural as it always was for me.

Finally, a word on the importance of research into hearing loss. As a person who is also blind, employment opportunities are very hard to come by. I have been fortunate however, but so many others who are deafblind have not had the opportunities I’ve had. If we are able to restore hearing loss in people who have progressively lost their hearing, it would mean that they are given back something which one can only recognise as a gift from above which we took for granted until it was lost. I have no concept of what it is like to see. To me, sight is like science fiction. But hearing and its loss is very real in my experience. To be able to walk through a shopping mall and be able to instantly recognise a song playing through some distant speakers again would be amazing! I envy people who say as we’re walking along, “oh I haven’t heard that song in years! I love it”! I usually ask at present, “what song is it, I can’t hear it”! Simple pleasures would be restored if we were able to put our time, energy and money into research that would make an astronomical difference, even more so for others than for me. I would be able to sing again and to resume my career doing something that as I said, is a part of me. Others however, would be more employable than they have had the chance to be. It is sad to have to reflect on that reality, but it is certainly true that employers look first at a person’s level of function and efficiency. I certainly don’t endorse such a narrow focus, but it sadly is something which we have to contend with, even though as people who are deafblind, we have not only invaluable skills to offer, but also insights which cannot come from a life without disability.