A five-year-old Melbourne rail fanatic took over the job of station master and assistant train driver at Flinders Street. It’s all part of a novel awareness campaign for a rare genetic disorder.
To join Harry’s campaign, and to learn more about Usher syndrome, visit: http://www.usherkidsaustralia.com
#7News
Posted by 7 News Melbourne on Friday, September 9, 2016
Filed under cochlear implants for kids, Usher Syndrome
I really didn’t think this through. That is, the impact of sharing with the world the news we had hidden for quite some time. Hiding made it seem more like a dream, one that you could wake up from and easily face the day knowing it wasn’t truly there confronting you . That was obviously inaccurate but without having to talk about it day in and day out, I was able to compartmentalise it and store it away for the moments when I really had to deal with it. And day-to-day Harry mostly lives the same type of life as a typical 5 yr old boy. It is punctuated with many additional appointments, and we have to be vigilant with his health and not taking our eye off the ball when he attempts new physical activities, but he knows his limits and so do we and that works.
But now it is different as I am no longer dreaming – it is just our reality. I have told my readers, all the family, our friends and colleagues that Harry’s deafness was a result of Usher syndrome and now we have to get out there and tell the world this condition exists and help raise awareness to help fund a cure.
Last year I sat on the wings as the family and friends of the Usher Community helped spread awareness through a campaign linked to the Autumnal Equinox.
‘Own the Equinox’- it is called- and it sought to tie into the Northern Hemisphere’s Autumnal Equinox when daylight and darkness hang in perfect balance, the moment before the northern hemisphere slips into darker days. It is a wonderful metaphor for Usher syndrome and the state of Usher syndrome research.
The campaign focuses on social media posts for 26 days in the run up to the Autumn Equinox which was written in the US Congressional Record last year as Usher syndrome Awareness Day. Some people posted walking a mile- a -day, running their first 26 mile marathon and many other feats to raise awareness. I knew that wasn’t for me. I hate running and I never walk and there was no way I’d get Harry walking every day for a month. I had to come up with something that meant a lot to him and represented the journey we were all on.
So it is that ytime of year again and we are out on the stage with everyone else. We are doing #atrainrideaday, all over the MetroTrainsMelbourne network covering many of the stops that take us to the appointments we have to undertake to manage Harry’s Usher syndrome. That is our current journey. We’ve injected some fun into our contribution to build awareness and have asked all our social media friends to take a picture of themselves at their local train station and hashtag #USHEQX and #UsherKidsAustralia. We have reached places like Tokyo, Cameroon, Paris, London, New York, Wagga Wagga, Chicago, Hong Kong and I don’t want it to stop there. I know it is not the Ice Bucket challenge but there is no reason this can’t go “viral”. If everyone we know manages to take a photo of themselves at a train station (remembering to click public on the post setting) and their friends , and friends of friends do the same, we will reach all corners of the globe . Our voice will tell the world that Usher syndrome exists and we want to cure blindness for every inherited eye disease. I urge you to join in on instagram@usherkidsaustralia and @harrys.ears or your own FB page using the hashtags so we can see what you’re doing. Just remember to make your post setting public.
Next week Metrotrains Melbourne have promised to get on board ( excuse the pun!) .This is the story of a 5 yr old boy who was born deaf and is now speaking and hearing as well as his peers as a result of the cochlear implant. He loves trains. He is obsessed with trains and can’t think of anything better to do every day than jump on a train, even one stop and help us promote awareness. He will lose his sight if we don’t and then his reality is that he won’t be able to travel unaided on public transport. As an adult this will mean he will have to use a white cane and a Guide Dog and those yellow and blue raised bumps on the platform will be more than interesting colours for him- they will be essential to show him where the safe edge of the platform is.
Last Saturday the Herald Sun covered our story , helping us start the Awareness campaign. It tells of how Harry and Louis as best buddies, living around the corner from each other, were able to share a passion for the Hawks footy team and a rare genetic condition. It was a great article and here is the link to share.
Herald Sun Sat 27th Aug 2016
The campaign will culminate on September 17th when UsherKids Australia will hold an event at the Melbourne Royal Children’s Hospital in Flemington for the new network of families who have found us through our website. Attending to support them will be many doctors, allied health practitioners, researchers, geneticists and early intervention teams from around Australia. As many are located interstate we will stream the event live to them and record it to place on our website for those in a different time zone. I never thought we would achieve something as great as this so quickly. It is truly testament to what a combined voice can do to advocate for a better outcome for children with disabilities.
So there you have it. I am reliving the diagnosis everyday for this campaign as to make it truly an awareness campaign the information needs to be repeated again and again to get to new people. Everyday I am sharing what Harry’s future may look like and how important it is that we change that. How imperative it is that we push research in Australia to find the cure to inherited eye diseases . I know we can do it.
Filed under cochlear implants for kids
Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in , therein to be content”
Helen Keller
I have been ever so quiet. But there has been good reason.
3 years ago we read an article in the Herald -Sun about a 3 year old boy being taken in a helicopter to build up a visual image bank as he was losing his sight. This little boy was also profoundly deaf and had cochlear implants. He had just been diagnosed with Usher Syndrome, which Google states is the leading cause of deaf-blindness in the world. However, despite this claim it is an extremely rare condition , caused by recessive genes in both parents who carry a gene deformation which will go back many generations. That gene may be “activated” when they have a child and then they have a 1 in 4 chance of activating the syndrome. This article stirred something in my husband and he didn’t sleep for sometime with the worry that this may be the cause of Harry’s deafness.
The process to find out was not easy . It is not straight forward to request genetic testing to put to bed your fears about a rare condition that you have 1:650,000 chance of having given it to your child. The cost is too prohibitive and so you are asked to jump through many hurdles and be down right pushy to get the testing approved. And then there is the issue the cost. In 2013 the cost for testing the most common 90 genes to cause deafness was approx. . $4000(AUD). The test was only done in the US as Australia didn’t have the facility to test ecumenically at this point. This is no longer the case. In the last 3 years the price has halved and it can now be done within Australia.
I won’t go into the details about Usher Syndrome as there are 3 types and they all differ slightly depending on the gene that causes it. Harry’s version USH 1F is created as a result of our Ashkenazi Jewish heritage, which makes it even rarer. The fundamentals are that with USH type 1 you are born profoundly deaf , you have a dysfunctional vestibular system which affects your balance and around puberty an eye disease called Retinitis Pigmentosa sets in to deteriorate your vision leaving you with no vision at night and ultimately less than 5 degrees of sight or tunnel vision .There is a great resource at usherkidsaustralia.com and www. usher syndrome-coalition.org
We were given a confirmed diagnosis on Rare Diseases Day ( how about the irony in that ) late Feb 2014 and in July that year I travelled to Boston with the family from the newspaper article to a conference held by the Usher Syndrome Coalition USA who have created a network to bring together families and researchers worldwide. I was still extremely raw with the diagnosis at this stage but this event brought me clarity and most importantly hope for Harry’s future. The focus was on sharing news about the scientific endeavours that geneticists and researchers worldwide were working on to modify the genes that cause the eye disease Retinitis Pigmentosa. (RP) It was also amazing to connect with other families going through the same journey.
I returned with renewed vigour that we can do better than we were doing in Australia to identify these types of syndromes in young children and support other families through the education of key clinicians across the country. I can’t begin to tell you how many specialists told us we were crazy to think Harry was going to get this diagnosis. Comments along the lines of “ Many deaf kids have balance issues. Many deaf kids don’t walk till much later..” echoed through the halls of doctors rooms and Better Start providers we saw. It was simply that in their careers they never saw these kids. Traditionally USH would be identified when the children started tripping over their pets in their teens and their periphery vision had narrowed to the point they couldn’t see directly below or above them. I hold no issue with what was said before the diagnosis but I knew we could change things . We could change things because now we were 2 : two families in one region with all the same doctors. We had the power of our voice to advocate for all families with kids with USH in Australia. And so UsherKids Australia was born in Feb 2016 as a support network for all families in Australia to find information and unite under one banner for awareness and a cure.
But that’s not where it stops. In fact we are just at the starting blocks. Our family will stop at nothing to ensure the RP does not rob Harry of his sight. At this stage he has very little damage to the retina but every patient is different in the rate at which the RP sets in.
This month we set up a not –for –profit charity called Genetic Cures Australia ( website under develeopment) and we will use this as a fund-raising vehicle to support research at the Centre For Eye Research Australia working on inherited eye diseases.
This is not a part of the journey we had signed up for but we are in for the whole ride . All we ask is if you can support us in any way that you can, share our feeds, help create awareness.
Harry’s Ears is now on Instagram @harrys.ears and Usherkids is on instagram@usherkidsaustralia and twitter@usherkids
Filed under cochlear implants for kids, Deafness, Usher Syndrome
The government authority that provides hearing devices is rationing access to technology upgrades because its budget cannot meet unprecedented demand for the latest speech processor.
Harry has just brought home his new N6 processors but not as a result of his Australian Hearing upgrade he should have been eligible for after his N5 processors went out of warranty this month.
Australian Hearing used to provide every child with Cochlear Implants in Australia under 26 yrs a new processor after the processor was 3 years old. This was the period of warranty given by Cochlear Ltd and therefore the Federal Government through their agency Australian Hearing created a policy to ensure each child user had a processor under warranty.
It seems that the increase in technology from the N5 to the N6 was so great that everyone wanted the new processor. Probably the wireless capabilities in the N6 and the new SCAN program( an automatic monitoring of background noise) were features that made it worthwhile to request an upgrade.
Many families were waiting patiently to get their new processors while Australian Hearing was working out how to get around the lack of funds to give everyone out of warranty or who had broken their old processor beyond repair, the new N6. The policy was revealed a fortnight ago and made retrospective, declaring only children under 5 and between 25-26 yrs are now eligible to receive the upgrade after 3 years. Users outside this age group have to apply through their personal private health cover for the new processors.
This is not possible for a majority of families with children who are deaf and require cochlear implants. I understand a group of parents has started lobbying the Govt to reassess the policy and I urge you to contact your Local Govt to do the same. The more voices, the more chance of change. At least the kids going to school should be covered as the new technology used everyday in schools means the old processors will be outdated before too long and those kids will miss out on vital learning.
If you require more information on your child’s eligibility please contact your local cochlear service centre or CIC.
Filed under accessories, Deafness, Hearing impairment, Technology advancements
Filed under Bilateralism, Deafness, Hearing impairment, listening skills
Our families obsession with seeing the Rolling Stones live has emerged again .
They are currently finishing their Australasian tour and so I get the chance to review Keith’s choice of headband. Scrutiny of his headwear on this tour made me realise he also has the perfect ears to wear a pair of CI’s.
Perhaps after 50 years of playing guitar live he may need the assistance of cochlear implants to improve his hearing, as rock concerts are high on the list of circumstances that can impair your hearing for those of us with all the correct hearing structures
.
But the time has come when the headband is no longer mandatory . Harry’s recent addition of glasses has meant there is just too much headgear for a little kid. When you factor in hats and bike helmets poor Harry is so top-heavy he couldn’t balance even if his vestibular system was functioning well.
On a few of our over 30 degree Spring days it became obvious that the headband was not working well with the glasses. Sweating like a gypsy with a mortgage, all fogged up so he couldn’t see , there was just too much gear to manage. Also the weight of the battery and processor over the top of his ears and the glasses arm together were almost bending his ear in half- And I had been so proud of his flat ears – secretly I had loved the fact that the headband held his ears back and stopped them from curling! The glasses have a plastic frame with no screws so that they do not break when placed in contact with the pavement at high speed- ie the face plant . At the back they are held in place with an adjustable elastic band so as to ensure stability and to stay in place at all times. The glasses are made by a company called Mira Flex. Demo Video here. I am so pleased with this choice of glasses as the elastic also serves to hold the CI cable in place so if the magnet drops off the processors are left dangling under the glasses elastic.
Harry has taken to wearing them like a duck to water, which is ironic as we spent 6 months delaying getting them as thought it would all be too much for him ( and us). Without a doubt they are really helping and it is mainly for long distance and astigmatism. An astigmatism ” usually occurs when the front surface of the eye, the cornea, has an irregular curvature. Astigmatism is one of a group of eye conditions known as refractive errors and is very common. Refractive errors cause a disturbance in the way that light rays are focused within the eye. Astigmatism often occurs with nearsightedness and farsightedness, conditions also resulting from refractive errors. Astigmatism is not a disease nor does it mean that you have “bad eyes.” It simply means that you have a variation or disturbance in the shape of your cornea”.
Apparently 1 in 3 children ( not just deaf children) will have to use glasses at some point in their childhood. With a deaf child you are looped into seeing a Ophthamologist at a very stage. The reason for this is that there are some extremely rare diseases out there that link the eyes and the ears. An Opthamologist can ensure that they are monitoring the health of your childs eyes as they grow and will look out for any signs of alteration in the retina. So if you are the parent of a profoundly deaf child and haven’t yet been to see an ophthalmologist, please consider it. To look for one start with your local Children’s Hospital as they will have more experience with profoundly deaf children and their needs. I am only labouring this as the glasses have had a huge impact on Harry’s general ability to compensate all round.
The most obvious change since Harry started wearing the glasses is his balance. He seems to be so much more in control of his movement and the teachers at his kinder have seen a marked improvement in his eye contact when being spoken to and speaking to others. This is a funny one, as a lack of eye contact can often be interpreted as a sign of Autism. I have said it before , and this is my non medical opinion only, but it is not always the case- I am sure with Harry it was just about the fact he had so much information to process and his eyes were working so hard to help him balance and compensate for the reduced hearing capacity , that they were too busy to look at people directly when spoken to.
So now we have a son who is almost too cool for school. His mates at kinder have returned home requesting to have glasses like Harry and with the removal of the headband he somehow seems more grown up.
In 3 weeks time he will graduate from The Toddler Room at school ready to embark on 3yr old Kinder in 2015 . A proper classroom with 22 kids and only 2 teachers which will be a huge step from the 10 kids and 4 teachers he has had for the last 2 years. He is so ready and I am so nervous. There are so many things to consider and prepare for. The use of the FM microphone will be so crucial to ensure he gets access to all the speech from the teachers. But what about hearing what the other kids say…….I can’t even imagine how he will manage to pull out the words of his peers from the clutter of noise that 22 children will create in one room and manage to know what they want to play with him . There is no doubt he will manage it and use strategies we can’t even comprehend to ensure he doesn’t miss out. He will commit the routines in the room to memory as fast as Clark Kent changes to Superman in a phone box . But for now it is nearly Summer and he can look forward to enjoying being free on the beach.
We have recently moved to a new Occupational Therapist centre as his previous OT was marvellous but just didn’t have the space to accommodate what Harry needed at 3.
Today his therapist spent time with him working on his back extenders to build his core. Muscle tone is still a big concern with Harry, sitting still for long periods of time is not possible without him slumping and we recently purchased a great cushion which assists him to hold is core muscles in and sit upright without slouching. It also has a series of nodules which serve to stimulate the preproreceptors and let him have extra feedback through his sitting muscles.
http://www.senseabilities.com.au/products/item.cgi?cid=cid&pid=389
In contrast to the senses of vision and audition which can easily be understood by simply shutting our eyes or plugging our ears, the significance of vestibular function in our daily lives is more difficult to appreciate. When the system is functioning normally, we are usually unaware of a distinct sensation arising from vestibular activity since it is integrated with visual, proprioceptive and other sensory information such that combined experience leads to a sense of motion.
Check out the videos below showing what Harry does in his OT sessions to assist with his vestibular systems ability to compensate for its deficiency and all this is going on in the background whilst his language has developed over the last 2 years.
Harry at occupational therapy August 2014 from Hollie Feller on Vimeo.
Occupational therapy. Aug 2014 from Hollie Feller on Vimeo.
Testing Harry’s knowledge of colours and ability to listen to instructions whilst working the vestibular system and core.
sleeping baby
In the last few months so much has taken place that I have wanted to write to you about but I haven’t found the time.
Back in the day, Harry had a decent afternoon nap which meant if I could possibly stop myself from loading the washing machine or sorting the clean laundry I could sit at my computer and churn out a Blog entry. But alas, no more. He actually hasn’t had an afternoon sleep really since we went to London this time last year. He still sleeps at Kinder but I have had to restrict it to one sleep cycle of 45 mins. only as otherwise it massively impacts on when he goes to bed.
This leads me to the first part of my story- SLEEP
At the beginning of the school year we decided Harry was too large for his cot. The base was bowing under his massive 16 kg weight and when he didn’t want to go to sleep he was now able to scale the bars and fling himself out, usually requiring a Chiropractic adjustment on landing. So a small purchase of an Ikea toddler bed was thought to be the best transition to freedom. At least he could manage to safely get himself in and out of it without my fear of falls everyday. His delayed vestibular development effects how Harry understands where his body sits in space, so getting him to maneuver himself up and down from a normal single bed seemed to me to be adding an extra layer of processing he may be better off without at this point.
In hindsight, this new freedom was probably the cause of the fast path to no sleep. The first 4 weeks in the bed went perfectly and I was congratulating myself on how he was able to adjust to change. As an aside, the reason for this thought was that often when various Doctors or Specialists are assessing you, they could start to direct their assessments to a place that is in “ The Spectrum”. Seeing whether a deaf child is one that also has social issues or behavioral issues, is a common discussion and one for another Blog post… Remind me about it later.
It started to go pear-shaped when daylight savings was approaching and Harry realized that in the time he was in bed and before he fell asleep it became progressively darker outside. He would lie staring at the window and wouldn’t let me put the blinds down. Then he wanted the main light on to read with, which as you can imagine sent me crazy as there is no way you can fall asleep with the ceiling lights on. What we thought was a little fear of it getting dark escalated into him refusing to go to sleep – AT ALL.
The compliant boy, who used to read until he dropped off, now clambered out of the bed and started pulling everything in the room out of its position and onto the floor to play with. He was over stimulating himself and using whatever was in the room to aid him. The only logical step was to remove these things from his room, which I did one by one until there was only his bed and the change table left. He also used to bang his feet against the wall, which I guessed was to feel the vibration and allow him to work out where he was. Then he started to climb into the shelf of the change table with a doona and pillow and try and sleep there, as it was the only thing left besides the bed… Obviously sending me a message he would sleep anywhere except the bed.
I was really unsure what was going on at this point and was it was now taking us until 11pm to get him to settle. The level of noise he was generating so late at night was impossible to tone down as he was used to having no CI’s on at night. Often the only way to get him to sleep was to put him in the car and drive until he fell asleep to the motion. I also threw in some of the Super Nanny tactics I had seen on TV which were meant to ensure he stayed-put on the bed. The reality was a major workout for me, lifting a 17kilo boy back onto the bed hundreds of times a night. If you picture the scenario: an overtired, worked up, small child who was unable to communicate to us his needs and we were unable to communicate verbally what he was required to do. My challenge in communicating with a 2.5 year old who refused to sign, refused to look you in the eyes and was without his connection to sound resulted in hours of getting physical.
Through his stubbornness to succumb to sleep, he progressively became more and more overtired and with that he became over – sensitive or technically, hyper- defensive to touch. This meant I couldn’t hug him or stroke him or use any sensitive physical means to make him feel secure in the environment he was becoming stressed in. He started to display many of the signs shown by a child with Sensory Processing Disorder (http://www.sensory-processing-disorder.com/tactile-defensiveness.html) and in my own sleep deprivation I started Googling…. Never a good thing.
His behavior in the day was a direct result of the stress of getting to sleep at night. Dan and I had not eaten a hot dinner together, the girls hadn’t been able to get to sleep in their room next to his before 10 pm due to his noise and we couldn’t have anything resembling a social life for more than 6 weeks- it was time to call in the BIG GUNS.
In floods of tears at the GP’s clinic we were given Melatonin and a sedative 6 times stronger than Phenergan to put him to sleep. The idea was to allow him to fall asleep aided in his bed in his room rather than the car and eventually he would forget the scary associations he had developed with his room and night time and only remember the current calming sedative induced sleep from the antihistamines.
The melatonin was to try and get his body clock back on track and bring his circadian rhythms in line so he was going to sleep when he was tired. (http://www.sleephealthfoundation.org.au/files/pdfs/Melatonin-and-Children.pdf) There is not much research in to the long-term effects of using melatonin on kids but short term there is no harm. It seems Pediatricians have used it for kids that have autism, ADHD and other special needs for the last 20 years. I can also tell you that in this time when I did not know what to do, I reached out to the Facebook page I belong to “Parents of CI kids”. The most common response to my call out for help was to try melatonin. It transpired that I was not alone in this sleep-deprived world of a nearly 3-year-old deaf child with CI’s. It appeared to be a common occurrence at this age, there were other parents around the world who had also experienced similar sleep disruptions from their CI kids. I love this site and if you are a parent of a CI kid and don’t belong I highly urge you to join up.
It took a good further 2 months to get him back on track. I also sought the advice of a “Sleep Consultant” on the referral from our Pediatrician. It was at the Epworth-Monash Sleep Clinic in Melbourne (Dr. Margo Davey) http:/www.epworthsleepcentre.com.au/index.php/doctor-margot-davey , a Doctor with enough experience to see through the smoke and mirrors of the situation and who gave me the biggest telling off I had in many years. Interestingly she told me that I needed to forget Harry’s deafness and focus in on his behavior, which was that of a standard 2 1/2 year old boy ruling the roost. Yes, he may have some issues relating to not hearing at night but essentially when she striped back our routine, she felt he was running the schedule, not us. I can laugh about it now, as that short consultation allowed me to remember that I had been a mum twice before and probably not perfected sleep routines either time. But the rules of engagement I applied to very articulate 3-year-old girls to get them through this period just didn’t make the grade with Harry. He needed routine and no deviation and me to be firmly in the driving seat.
We are still not back to where we were at the beginning of the year but we are in a place we can manage and it works for us all. I am in the room till he falls asleep and we are still using the melatonin but in such small doses it is negligible . He still has the blue light on all night and some nights will ask to fall asleep with the bedside light too. He is sleeping all through the night for 11 to 12 hours so I actually don’t think I can ask more than that of him at this age.. He will now also let a babysitter or even his big sister put him to bed and read to him until he can no longer fight the heavy eyelids.
There is no doubt that on this journey you can get so embroiled in the struggle for normality that when something fairly normal takes place you are unable to see it for what it is. I have said before that we are on a rollercoaster with Harry and it goes at quite a speed. We don’t have the luxury of time to reflect and ponder the best move in our chess game; we have to be instinctive and practical. This episode really taught me that it is easy to lose my natural instinct amongst the labels and the instructions for Harry. But it is still there if I dig deep enough and get enough sleep!
Next BLOG I will discuss Clinical Assessments
Gymnastics classes on a Friday morning are a great way to get Harry to work on his vestibular system as recommended by our OT. Last week it was themed for the Australian Grand Prix annually held here in Melbourne.
He had such a ball and practiced this racing track circuit most of the session until he could manage it without toppling over- what perseverance my son has…..
using the aqua accessory
I am sure many of you wonder whether swimming can be on the agenda for Harry at this stage.
Not only does he wear electrical equipment ON his head but he also has grommets inside his inner ear. Neither of these make it impossible for him to swim but they are certainly huge deterrents .
http://www.cochlear.com/wps/wcm/connect/au/home/support/cochlear-implant-systems/nucleus-aqua-plus
Filed under Uncategorized
The life of a CI kid’s family appears to me to still be a roller coaster of emotions. It has now been 20 months that Harry has been hearing and we have survived a winter without incident. The latest appointment with our ENT was no more than 4 mins long and we left with a huge smile, as internally everything appeared to be perfect. We made a comment to our surgeon that Harry was starting to get fussy about putting his ears on in the morning but once on he was fine. Our ENT remarked that we should just do what we needed to get them on and not to be concerned that we had resorted to bribery through use of TV or I Pad to assist us.
It was almost as if the last 4-5 months of normality was cursed by throwing in a Specialist appointment, as that following week Harry got progressively more annoyed with his ears to the point where at school it was taking them over half an hour and three teachers to get them back on after his afternoon rest.
I put in a call to the Cochlear Implant Clinic and they scheduled some immediate Mapping for Harry (checking the sound levels and electrode functions by computer). It is a hard call to know whether the issue is a sudden shift in behaviour or a technical glitch. Sometimes a mother’s instinct just doesn’t kick in and I was at a loss as to why this was happening. Harry was not a kid that got annoyed by his ears. He had always been extremely compliant. Checking the Mapping would allow me to rule out a fault in the sound levels and focus on his behaviour if that was the issue.
It turned out that Harry had developed sensitivity to some high frequency sounds on his left side. He was getting agitated by the high volume he was accessing these sounds just on that side. The session at the CIC aimed at reducing the sound levels right down on the left to a place he was comfortable with at this point. Before we arrived at this conclusion we went through the stress of taking Harry for an X-ray to make sure none of his recent falls had dislodged the electrodes internally. Dan and I had become somewhat complacent about Harry falling on his head. His “balance challenges” mean he falls a hell of a lot and his threshold to pain seems to be extremely high. We just pick him up and brush him off these days and move on with the next activity. But in actual fact some of those falls could result in damage to the internal components and our lesson here was to perhaps pay more attention to changes after each falling incident that results in his head colliding with the ground! It was extremely fortunate in this instance the X-ray proved to be clear and there was no issue with the internal pieces. Thank goodness, as the outcome would have been more surgery. So the Clinic set about changing his levels to make it more tolerable for him.
Of course I tried to find out why this had happened. Is it not possible we can go through a year without hiccups and incidents? Does there always have to be a drama? I am sure for many parents when their child decides not to put the CI’s on for a day they just resign themselves to it and try again the next day. For some reason his defiance makes my blood boil and I see red. Thinking of everything we go through as a family to give him sounds I can’t bear to be defeated. So when the headband is hanging on a door handle and is not on his head it creates a drama in my mind! Given my reaction to his world of silence, I was determined to get the audiologist to give me a scientific reason for this need to change his sound levels. But, they couldn’t.
There are so many unknowns with the toddlers. Thinking about how much physical change goes on with them to grow and become people, is it any wonder that occasionally there is a need to adjust their volumes? Of course it doesn’t affect all of them, but for some reason unknown to us all, Harry now is only able to tolerate 40% less volume on his left side for the high frequency sounds. The left side is coincidentally the site of the infection from last year- and no-one can say if that is linked or coincidence. Mastoiditis (the infection he had) is rarer than being profoundly deaf. One needs to be pragmatic and focus on the fact that this change in sound levels shouldn’t really matter. 7 or 8 years ago newly implanted kids were only ever given one implant and managed to learn to speak and listen perfectly well. He’ll be right Mate.
Overall I can pick up that in the last few weeks of this lower sound level there has been a decrease in the accuracy of Harry’s speech. Some of his regular words are starting to sound the same. I can’t tell the difference between “Bubbles” and “thank you” but his listening is still on track and I can tell he understands everything fine. It also hasn’t stopped him repeating new words, which is the huge stepping-stone to language he is accessing right now. He has started to use words to get what he needs. Utilising verbs such as “Help” and “fix” in his play routines means he can verbalise what he would like to achieve. Spontaneously saying “Thank you” when he is given something makes me go all warm and fuzzy inside. His latest leap has been when you ask him to choose between two activities without any visual clues he is clearly repeating the activity he wants to undertake.
Given all this progress my primary question to the Audiologists had to be whether it would go back to the same level it was at in July.
Their response to my question was simply that Harry would slowly start to build a tolerance to the high-pitched sounds and therefore allow an increase in volume over time. If not, the brain will learn to interpret speech at that volume.
I guess either way he will get there in the end.
For the last year and a half I have been often heard quoting “never tell me the odds” as Harry seemed to always be the kid that didn’t do anything by the book.
This phrase reminded me of a movie and sure enough it is a quote from one of the best Bloke movies of all time. To give you a clue, I feel like the Force has been with us in recent months; there have been no major illnesses, Harry’s balance is showing signs of strengthening close to normality and his speech has jumped into Hyperspace.
“Sir, the possibility of successfully navigating an asteroid field is approximately 3,720 to 1.”
“Never tell me the odds.”
Forgive me for using the Star Wars analogy but as I have spent the last few months convincing myself his slower progress with speech and his desire to only mimic words related to food, cars or trains is directly linked to his gender, I am going to run with it as appropriate.
In the last 2 weeks Harry has managed to surpass my stereotyping and is able to parrot a huge percentage of what we are saying to him. This is a skill you will notice in most 18 month- 2 year olds. You say a word and they repeat it back to you several times and then it forms part of their vocabulary. Given Harry’s hearing age is 19 months ( 17 if you take out the 2 months he was sick this time last year) this is spot on. In the near future we can wish he surpasses his hearing age to have birth-age appropriate speech and language skills , but for now I am thrilled.
In his speech lesson this week, Beth and I spoke of his huge increase in vocab and given his desire to take in the language we are now moving to weekly sessions. This will give us the time to start working on expanding his vocabulary to include verbs or action words to add to the nouns and names he has learnt. With the addition of verbs he will be more able to start putting small sentences together. At the moment he is able to say 2-3 words together but they are phrases such as “see you later” rather than combining individual words.
I have dug into a great resource which Cochlear provides on their website. It is called the “Listen, Learn and Talk Auditory Habilitation Theory”. So for us laymen it is a chart showing age appropriate stages of listening and speech for babies and toddlers. Checkout http://www.cochlear.com/wps/wcm/connect/au/home/support/rehabilitation-resources/early-intervention/listen-learn-and-talk/listen-learn-and-talk
Harry has mastered all the 16-18 month old skills. In listening he discriminates between phrases and is now imitating words heard.The section of Expressive Language covers the following for a 16-19 month old.
o Jargon disappears
o Increases vocabulary, 10 or more meaningful words
o Decreases use of gesture – relies on talking to communicate
o Imitates words heard
o Asks for more Receptive Language
o Understands more simple questions
o Begins to understand longer phrases with key word in middle of sentence
o Identifies more body parts
o Finds familiar object not in sight
o Understands 50 or more words and for speech in this age group
For Speech in this age group toddlers increase single word approximations , most vowels are present but they still mainly producing front consonants [p, b, d, m, n, h, w].
They next age group is 19-24months and there are certainly skills here he is yet to master but by no means does he need to master them all.
For listening (audition) at this age they need to master the following list:
Auditory memory of 2 items,Discriminates songs ( yes mastered), Comprehends a variety of phrases ( yes mastered), Discriminates descriptive phrases ( not sure about that one!), Follows a two step direction, e.g. Get your ball and throw it. ( yes with very familiar routine such as shoes and socks)
Then there is Expressive language
Expressive Language
Uses new words regularly
o Increases expressive vocabulary to 30 words or more ( mastered)
o Attempts “stories” –longer utterances in jargon to get message across ( certainly not here yet)
o Begins to use own name when talking about self ( this will come )
o Uses possessive pronouns – mine ( certainly not here yet)
o May ask where questions Where car?
o By 24 months may use2 – 3 word phrases with nouns, some verbs and some adjectives ( this is what we are targeting in Speech classes)
The Receptive language and Speech sections for this age bracket are what we are working towards. I can list them here so you get an understanding of our benchmark and they are only a guide as each child is unique ( of course)
Receptive Language
o Completes two requests with one object
o Chooses two familiar objects
o Comprehends action phrases
o Points to a range of body parts, e.g. elbow, cheek
o Begins to understand personal pronouns –my, mine, you
o Recognizes new words daily
o Increases comprehension – decodes simple syntax
o By 24 months understands 250 – 300 words
Speech
o Approximates words
o Substitutes /w/ for /r/
o Uses suprasegmental features
o Most vowels and diphthongs present
o Consonants [k, g, t, ng] emerging
o Consonants[p, b, m, h, n, d] established – used in initial position in words
o Consonants often omitted in medial and final position
Let me end on this note. There is not an ounce of delay on Harry’s Cognitive skills . He has developed ahead of the game in this area and has really great fine motor skills ( probably to balance out the slightly delayed gross motor skills)
The list the provide for this age in this category goes as follows ands I can tick them all!
Cognition
o Imitates symbolic play, e.g. household activities
o Uses one object as symbol for another
o Places triangle, circle, square in shape board
o Imitates vertical strokes
o Threads three beads
o Begins to tear paper
o Imitates ordering of nesting cups
o Begins to categorize objects in play
o Uses two toys together
o Stacks blocks/builds tower
o Completes simple pull out puzzle
o Activates mechanical toy
To support Loud Shirt Day in 2013 both our local primary school and Harry’s ELC will be running a Loud Shirt Day event to raise funds for Taralye, our Firstvoice centre. This is our opportunity to give a little back to the service that got us through our first year of Harry’s hearing loss and continues to give us amazing assistance to find Harry’s true potential to hear and speak.
If you would like to donate please click on this link
https://loudshirtday2013vic.everydayhero.com/au/EPS
My Story
Harry is the brother of two EPS students Tess and Alice Feller. He was born profoundly deaf ( we don’t know why- it is just one of those things) and couldn’t even hear a 747 jumbo jet take off next to him. When he was 10 months old he was given the gift of sound by the amazing Bionic Ear also known as the Cochlear Implant. This technology allows the user to hear the sounds around them and speech , but it takes a lot of intervention and help by Specialists to teach Harry how to listen. Supporting Loud Shirt Day supports the centres that teach Harry and other kids like him how to hear and speak, the younger this starts the better the outcome.
All being well, by the time Harry is ready to start school he will be just like all the rest of the kids in Prep- listening and speaking beautifully and clearly to his friends and teachers.
Thank you for your support to give Harry and other deaf children the best possible start in life.
You can follow Harry’s journey from the beginning at http://www.harrysears.com
I had some fun tonight playing around with the iMovie program on my Mac.
The most footage I had was of Harry trying to walk over the course of this year .
I think I did an OK job…next project Learning to Talk!
channel 10’s The Project interview with Taralye’s Ambassador Sarah Murdoch
What great PR for Taralye to have this aired on Channel 10. Sarah Murdoch as Ambassador to Melbourne’s Oral School for the Deaf, Taralye, visits the centre and talks to families about how the Cochlear Implant has changed their families lives.
It was a strong reminder that services such as Taralye are vital to families with Hearing Impaired kids. Watching Chantelle , the mum interviewed, revisit the moment when she found out her first child was deaf rang true as one that never leaves you. We have come a long way already with Harry in the last 18 months and nearly 2 1/2 years since that day . It has not all been the perfect scenario but he is moving ahead at his own pace bringing sound to his world.
You might notice there are a number of comments on the Channel 10 website under this segment from members of the Deaf community who felt Sarah Murdoch did not choose her words well… she referred to the children at Taralye as becoming normal rather than being deaf..we all know what she meant .. the gift of sound is not accessible or chosen by all deaf people/families, but for those whose lives the Cochlear Implant touches , it is without doubt the most incredible invention and a precious gift.
If you live in Melbourne please support Taralye this weekend by coming along to their Market Day fundraising event
For more details check out their website
Taralye
Filed under cochlear implants for kids, Deafness, listening skills
We knew it was coming and here it finally is.. the latest Nucleus model with wireless capabilities.
There is no news on a date for Australia as yet but any thoughts on the whether you will still need an accessory port if everything is wireless??Related articles
- Cochlear Announces the Nucleus(R) 6 System — Simply Smarter in Every Hearing Situation (newsmaker.com.au)
- Cochlear’s New Nucleus 6 Implant With Advanced Audio Processing, Automatic Scene Detection, Groovy Designs (medgadget.com)
Filed under accessories, Deafness, Hearing impairment, Technology advancements
Last week the Rolling Stones played an historical gig at Hyde Park, London, having not played there since 1969. It was of those rare but amazing London evenings of warm temperatures when the sun doesn’t set until 10:30 pm. Those geriatric rockers, as Dan likes to refer to his adult obsession, had so much punch for their age (mostly 70 years old) they were an inspiration to watch. Throughout the gig, which we were privileged to attend on the last night of our overseas holiday, my focus was constantly on Keith Richards’s bandana. Electric blue, it looked identical to Harry’s headband. Not only that but Keith also sported a full head of unruly curly locks tucked behind it. I also found myself concentrating subconsciously on the vibrations of the music- almost putting myself in Harry’s shoes as if he had been with us at the concert?
So we are finally home after a month visiting family and friends in the UK and a week to get over that in France. Harry turned 2 the week before we left and there was no doubt we were traveling with a regular two-year-old boy. Antics of climbing out of his cot before he fell asleep at night, pulling out Grandma and Grandpa Finchley’s TV satellite antenna, leaving them for days wondering why they had no TV picture, were but a few of the things he got up to. He met many new faces and I think I could safely say on their behalf that many would not have known he was deaf if they hadn’t previously known.
Spending that much time with all of us not working was ideally a time for Harry to increase his vocab and absorb all the new sights and sounds of a city with over double the population of Melbourne. According to Alice, one day she counted 55 siren sounds on our outing- that’s a lot of crime and accidents in one day- but that is London. Busy, fast, crowded, noisy and full of different smells. I wouldn’t doubt that just taking all that in everyday was more than enough for a two year olds senses to cope with especially a boy obsessed with trains and vehicles. Given a few more years on him, I have no doubt Harry will be exactly like Alice who started mimicking the announcements on the Northern Line tube…. “The next station is Hampstead, Swiss Cottage, Finchley Rd….so please mind the gap between the train and the platform… Stand clear closing doors” etc. Harry is not quite there yet but who knows if it is all stored away in his little mind waiting for an opportunity to jump out. Speech wise he was quite reserved throughout the trip. I can’t really think of any new words he spoke, but that could be that I am writing this at 4 am in a jet-lagged state so am a bit fuzzy. He did perfect his counting and Tess worked really hard with him on this and has him counting with her to ten. But since he has settled back into a normal routine, the new words are starting to come. I know I am still able to reel them off, which hopefully will not be the case later this year, but it is useful to be able to record them here. We can add in “cucumber”, “see you later”, and “ding dong” for the doorbell. He is also doing a heck of a lot of babbling. In those moments the missing plosive sounds of “B” and “D” are making a statement, it is just not in a real word. I think this for me really consolidates the fact he is hearing everything, but it is just a matter of him catching up. He is definitely speaking like a child who has been hearing for 16months, rather than a 2 year old. But I would also say his comprehension is that of a two year old as he certainly understands everything you say. Funnily I picked this up when we where talking to a friend about going home and Harry was on the other side of the room playing happily by himself. He heard that we were saying that we would see them later- he immediately started to pipe up “ Gye Gye, See u “ater”. We were amazed!
He also perfected his preoccupation with pigs whilst away- his mild snort that he used to tell you he wanted to watch Peppa Pig has now turned into quite a hearty version based on listening to Doris the pig who belongs to friends of ours we visited in Suffolk. He whiled away many hours on the airplanes watching episodes of Peppa Pig using the FM system which I hope cut out the noise of the plane and allowed him to focus on the words. I love this show for Harry because in addition to its great humbling humour, the language is very clear- the sentences aren’t long or complicated and so he has a good chance of grasping what is being said.
Suffolk, UK
I was able to discuss at great length the pros and cons of I-pad usage for teaching kids with a hearing impairment when I met with my dear old friend Mark in London. He happens to be a Teacher of the Deaf and a Speech Therapist in a school in North England. I hadn’t seen him since Harry was born, but we have spoken via email a few times. It was so amazing to hear what the UK is doing to progressively move their kids forward through the use of I-pads and Apps. I was also blown away by how the services in the UK catered for all the manufacturers of Cochlear implants. In Australia our kids are solely implanted with Cochlear Ltd, in the UK depending on where you are implanted and who is looking after you, you may have a Med-El or Advanced Bionics system. Given the recent burst of advances in technology by the other Brands of CI, I found this fact fascinating. There is no doubt in the end they will all be more or less the same as otherwise they wouldn’t be able to survive as commercial companies in their own right. In a few weeks our ENT Robert Briggs will be chatting to Dads about the forthcoming technological advances we can expect from Cochlear and Daniel will let you all know via the Blog what he has to say.
All in all it has been a month of steady progress for Harry. He is undoubtedly an inquisitive and brave two-year-old boy, who takes risks and is obsessed with anything that has wheels. He has gained the confidence to walk out in the wide world on his own with out my hand to guide him. He has gained the confidence to say “No”, with an accompanying strong shake of the head when he doesn’t want to do something. He has also started to sign things he needs when without his ears at night. Communication is a combination of various strategies, and Harry is learning the art of mastering the most effective ones to get his needs met. All else falls by the wayside and there is no point forcing it. If is a word is useful to him he will speak it- if not it will stay stored. Can I simplify this by wondering if this is because he is a BOY?
It’s all in the name…
What should I call the headbands?
Should I reference ears, or hearing or fashion?
For sure, “Bionic” will be Trademarked by the Institute, so the whole family sat around the table tonight reeling off various versions of Harry’s Ears and trying to come up with a cool name for the headband.
Maybe we don’t need a name , as
my all time goal is to get Cochlear Ltd to include the headband in the suitcase of accessories
you get when your child receives their implant(s).
Wouldn’t that be awesome as it is all very well being supplied pens with screwdrivers on one end and a million processor covers , but what about an accessory that keeps them on a head that is only 50 cms in circumference ?
So, Folks, I really hope some of you guys all over the world tuning in to my tales will also buy up big on the Bionic Headband. My next step will be to set up shop(online of course ).
And the big news , based on your feedback, i have pleaded to get the price down to $18 AUD . I will be making hot pink for girls and electric blue for boys.
So stay tuned for more details
Filed under Hearing impairment, Uncategorized
Filed under cochlear implants for kids
Revised post with all the words
Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in , therein to be content”
Helen Keller
I have been ever so quiet. But there has been good reason.
3 years ago we read an article in the Herald -Sun about a 3 year old boy being taken in a helicopter to build up a visual image bank as he was losing his sight. This little boy was also profoundly deaf and had cochlear implants. He had just been diagnosed with Usher Syndrome, which Google states is the leading cause of deaf-blindness in the world. However, despite this claim it is an extremely rare condition , caused by recessive genes in both parents who carry a gene deformation which will go back many generations. That gene may be “activated” when they have a child and then they have a 1 in 4 chance…
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Filed under Uncategorized
Harry's Ears 