Category Archives: cochlear implants for kids
Tonight SBS Australia aired this fabulous documentary on our story with the Shepard family,proving that it is possible to overcome the heartache of a diagnosis through the support of other families. That is why we started UsherKids Australia…no family should travel this journey alone. “It changed all my preconceptions”: Meet the boys living with Usher syndrome and defying darkness | SBS News
Filed under cochlear implants for kids
Our Harry, the Station Master
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
Posted by 7 News Melbourne on Friday, September 9, 2016
Filed under cochlear implants for kids, Usher Syndrome
Let’s Own the Equinox #USHEQX
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.
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
Eyes and Ears
Everything has its wonders, even darkness and silence, and I learn, whatever state I may be in , therein to be content”
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
Keith Richard has the best ears for a pair of CI’s
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.
Signals to the brain..more on Occupational Therapy
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.
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.
Password protected videos use the password:harry2011
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.
If we were meant to pop out of bed , we would all sleep in toasters- A lesson in sleep for CI toddlers
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
Harry 33 mths: gymnastics for balance
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…..
Summer rap up
It has been 3 months since I last wrote on the Blog, which is remiss of me.
To make me feel better I will share with you that I have noticed a trend within the Blogs of Parents of Children with Cochlear Implants. And that trend is that once things start to click into place with their child’s speech the outlet of the Blog takes a back seat.
Is it that we no longer need to voice our frustrations and challenges? Maybe, but they certainly don’t completely disappear with time it is just that we have more tools in our tool box to cope with them , I think .
After a period as a family of a CI kid we enter a world of relative calm and dare I say it “normality” which doesn’t feed the necessity to pour out our heart and soul to the world. Of course I am going to continue to write this Blog as you never know what is around the corner and I am still digging up interesting experiences as we plod along .
We had an awesome summer. I think the best holiday we have had as a family of five and that would make sense as it was wasn’t the one when we were waiting for Harry to be implanted on our return and it wasn’t the one following his hideous infection last year. It was just normal really- how I remembered Summer holidays when we just had the 2 girls. Dan and I laughed a few times at the long list of “requirements” we had jotted up on the trip this year that will become our bible for booking a family holiday. NO stairs, gates that lock to the street. Door handles high enough for him not to be able to reach and open, shade by the pool for when he can’t go in. And most importantly lots of room to spread out toy cars and trains. We also had grass and playgrounds close by so Harry had options for playing that also met his Occupational Therapy needs. And for Dan there was always a big, well equipped kitchen so he was happy too.
Having Harry walking was a huge advantage on the trip. It meant he was able to be independent inside the houses we stayed in and that meant I could relax ( to an extent) . But as with most 2.5 yr old boys this independence extended to constantly needing to be on the move. When we weren’t enjoying the luxury of the house we had swapped or rented , we were running after him in a High Street nearby where we were attempting to have lunch or dinner or just getting an ice-cream. That boy does not stop moving, it is almost like he is trying to make up for the delay he had in getting onto his feet properly. Thank goodness for those huge stretches of wet sand on the Northern NSW beaches. Endless walking and navigating rock pools was the perfect environment to test Harry’s balance.
We had nearly 4 weeks off together and when we returned and everyone was back in full swing and routine , I took a moment to reflect on how far Harry had come in the last 12 months.
We are nearing the 2nd anniversary of his implant switch on and I have a son who not only hears what we say but is also observant enough to recognise and name many sounds in the environment .
I have stopped counting his words and have replaced that with a record of the number of words in each “sentence”. The constant and detailed review might be obsessive but as parents we are the best advocates for our kids and the more you know the more you can help them.
Words are just noise
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.