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.

I lend my unwavering support to Action On Hearing Loss, and I will contribute to the organisation’s efforts however they see fit to use my skills; from coping well with existing hearing loss, to providing information that might help research efforts into the reversal of that loss. I am at your service.

The Mcintyre family

Teddy’s journey so far…

On the 24th March, 2016 at 8:14am we welcomed our beautiful baby boy Teddy into the world. He was amazing and everything that we could have dreamed of. The doctor came to check Teddy over and found that he didn’t appear to have red eye. After getting a second opinion from his senior, she also confirmed that she couldn’t detect red eye.

Teddy was referred to ophthalmology the following day and at just 28 hours old he underwent a series of eye examinations by a paediatric ophthalmologist. Teddy’s ophthalmologist discovered that Teddy had bilateral retinal dysplasia due to his retinas not developing properly. He explained this situation clearly to us and we booked an appointment to see him the following week to go through our situation in more detail.

Teddy was prescribed dilating eyedrops and at the following appointment we were told that there was nothing they could do for Teddy’s vision and we would be sent an appointment to see a senior paediatric ophthalmologist in Leeds for a second opinion.

A few weeks passed and we attended the appointment in Leeds where Teddy’s condition was confirmed as bilateral retinal dysplasia. The pressure in Teddy’s right eye had begun to rise and after a number of eyedrops failing to bring the pressure down it was advised that Teddy should have cyclodiode laser treatment to get Teddy’s glaucoma under control.

Teddy had his first treatment at 10 weeks old and required the procedure three more times. We were then given the good news that the pressure in Teddy’s right eye was stable. During the following few weeks the pressure in Teddy’s left eye began to rise and he required cyclodiode laser treatment in the left eye, too. The pressure in Teddy’s left eye rose much higher (into the late 40s). He required the procedure seven times in the left eye and was prescribed a variety of eyedrops, totalling 9 drops a day.

When Teddy was 9 months old we attended an appointment with a geneticist where we were told that Teddy has Norrie disease. This was a total shock to us as there is no history in our family. We were given lots of information about the condition and went away to digest the news.

We are now 10 months into our life with Teddy and our Norrie journey. Teddy is still the beautiful baby that we welcomed into the world and we couldn’t be more proud of him. He surprises us every single day with the milestones he meets and the determination that he shows us. Teddy is sitting strongly and has learnt to clap and wave like his peers. He is a happy baby and very strong willed. Teddy makes us laugh everyday and we wouldn’t change a thing about him.

Teddy’s condition initially upset us as a family but seeing how he is now and knowing he knows no different makes us realise everything is fine. Teddy is a happy little boy and needs positivity and encouragement surrounding him. We know Teddy’s life will throw many obstacles our way but we live for the day and will adapt as Teddy’s needs change.

At present Teddy is a happy little boy that is keeping up with his peers well and is also free of eyedrops with stable eye pressure.

If I can make him half as proud of me as I am of him then I know I will have done my best as a mother.

The Norrie Disease Foundation is developing information materials for medical professionals who may be unaware of Norrie disease and for parents of newly diagnosed children.

Why bother With Braille?

David WilkinsJanuary was Braille Literacy Month and the Norrie Disease Foundation have shared some stories from the Norrie community about what Braille means to them.

Why bother With Braille?  By David Wilkins who is blind and wears hearing aids due to Norrie disease.

The question first came up on the deck of the Tenacious, a tall ship for the disabled. And this was such an odd question it took me by surprise ‘but David, why do you bother with braille when you have audio instead?’ at the time I felt I was dealing with one of those rather strange people who for one reason or another prefer to use something different to the crowd. But I was to find that it was a question being asked regularly in the VI community.

The argument goes that with revolutions in technology and audio, why use a complicated system of raised dots which takes years to learn? The irony is that 110 years after the birth of its creator Louis Braille, his invention is everywhere. On train sinks and doors, on medicine boxes from the chemists and even on some (though very few products at the super market.) At the time of Louis Braille’s premature death at 43 this would have been unthinkable, as his own school flatly refused to introduce a system that did not use print letters.

So why one may ask, do some visually impaired people suggest that Braille is old hat, or surplice to requirements? Probably because they lost their sight at a later age (after 50) when reading Braille is
much much harder. Or maybe also because their hearing has given them no trouble so far. With good hearing and no need of an aid, it is conceivable that you feel you do not need Braille at all. You can hear
your computer, you can hear your friends and your audible phone app so why bother with Braille? The answer of course is that without it, you cannot read.

In the days before Braille the only system available was raised up printed letters, which were both hard to feel anyway, and so difficult to produce very few books existed. Blind children often had to rely on what the teacher said and very little else making Braille a true revolution.

Even today Braille fulfils functions audio never can. It’s difficult to listen to audio notes when doing a presentation, or to read aloud from a text if you’re trying to listen to it with one ear and find half way through that the voice is going faster than you can follow it. That’s how mistakes are made. But most of all, a child not taught Braille is more or less illiterate. They will be unable to read on their own, and if their hearing starts to give them trouble, it may well be too late for them to even learn Braille.

It may have taken me six years to become a competent Braille user, and a bit longer before I got used to reading on my own, but I’m now a veracious reader of anything I can find. And the introduction of technology which developed the Braille PDA means I can now access as many books online as I want to read. With no Braille, well I think I’d still be complaining that I couldn’t read the book I wanted because it hadn’t been recorded yet.

There is still the nagging question I’m asked from time to time “but why bother with Braille?” but now I have an answer, ‘because without it I’d be unable to read, or write, who wants to live like that?’ and if that means as some say I’m part of a mall minority who believe Braille is the future, well…too bad.

What Braille means to me

photo of Anthony Pitch Ryers speaking at the Norrie family meet in November 2018by Anthony Pitch Ryers who has Norrie disease.

Although I was diagnosed with dyslexia and am hence less good in Braille than I would like to be, I never for a minute underestimated the importance of Louis Braille’s work.

Often, it is said within the blind community that the era of braille is over. Speech technology would give easy access to digital text without having to print heavy and voluminous braille books or carrying around braille displays.

Admittedly, without this technology, I would not by far stand where I stand today and the possibilities it gives to access just about any digital information quickly and easily are almost endless. But even as a diagnosed blind person with dyslexia, I can say that nothing beats the richness of being able to exactly read what is written. This is something that is only possible thanks to Braille. Beyond
providing a literary experience, reading Braille regularly is also the only way to fully master the spelling of a language, a skill that is not trained when using digital speech, but which is no less than essential in today’s labour and study market.

Most of all though, Braille is the most important gateway to the world’s communication and literature for people who also have a hearing impairment, which is relevant for Norrie disease in particular.

Over all, I hence think that Braille skills are still a must have in today’s society and I would advise any blind person to train and maintain them, myself included.