Category Archives: listening skills
Australia leads the world in teaching deaf children to hear and speak
Filed under Bilateralism, Deafness, Hearing impairment, listening skills
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.
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.
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.
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.
“Size matters not. Look at me. Judge me by my size, do you?”
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
Please watch the videos below to see Harry’s progress.
I know I’ve said it before but it is “AWESOME”
Loud Shirt Day 2013 supporting First Voice Centres in Australia
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
How to describe what a cochlear implant recipient hears
I often get asked ” how much can he actually hear”….
My standard answer is “80-90% of what we can hear”. So pretty much everything as long as his brain decides to interpret it.
This notion of mine that a lot of what Harry hears is down to interpretation or decoding by the brain was put into much better words than I could ever write by another parent of a CI kid. So in his own words ….
” I need to apologise for ripping this from someone else and I’ve seen the analogy elsewhere talking in terms of pixelation on cameras but it all boils down to the same thing, CI’s are not normal hearing. … so I’ll try to make a visual picture that relates to the way sound is heard by a child with a cochlear implant. Suppose that you have to identify a four-legged animal, and you’ve not seen that animal before but you have to figure out what it is. Maybe you have to draw it. Maybe you have to learn the name for it.
Now that animal is standing in back of a bunch of trees. To see that animal, you have to look through tree trunks that are hiding big parts of that animal. Now, if you were looking through those trees with the equivalent of a hearing aid, you could probably only see the tail end of that animal because you could only hear the low frequencies with that
hearing aid. With a cochlear implant, though, you can see pieces of that animal’s head, pieces of its neck, its legs, its body, pieces of its tail end, but you still are missing pieces in between each of those that you see.
The reason I’m bringing this up for you to think about is because
it’s important for us to realize that children who are using cochlear implants still don’t see the whole animal. They see more of a range of that animal but they have to use their brains. They have to use what they already know about the world.
They have to use their cognitive abilities to fill in those gaps to be able to put together a picture of that whole animal. That’s the kind of task that a child is facing using a cochlear implant. “ Dr. Patricia Spencer, Professor, Department of Social Work, Gallaudet University
This explains rather well where the technology has to get to, like improving the camera on your phone, it’s possible it’s just the next round of upgrades. We often hear of children enjoying music but struggling with complex sounds and harmonies. ”
Today Professor Graeme Clark was awarded the 2013 Lasker~DeBakey Clinical Medical Research Award ( click here for the details) along with his fellow scientists Ingeborg Hochmair (MED-EL, Innsbruck), and Blake S. Wilson (Duke University), for the invention of the Cochlear Implant.
Please watch this video (http://www.laskerfoundation.org/awards/2013_c_interview_clark.htm) it is a very profound and humble short documentation of the genius of the three scientists and how their perseverance and determination has changed hundreds of thousands of lives around the world.
Channel 10’s The Project segment ” Getting Deaf kids talking”
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
Counting
Check out Harry counting with Tess whilst we were away in London.. He can now go all the way to 10. He really loves working with numbers and whenever is sees some on a notice or in a book he starts to count. His Kinder , Shelford ( www.shelford.vic.edu.au), have set up some magnetic numbers from the days when we used to use them on fridges, on a light box, so the kids can match the magnets to the drawn numbers. Harry spends hours playing with this. Obviously there is a lot of interpretation required to fill in some of the consonants that are being left out but as with all his other words it gets clearer with time and practice.