Category Archives: sensory integration

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

november 2014 Puffing Billy Train

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.

IMG_1144 IMG_1145



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Filed under accessories, cochlear implants for kids, Deafness, Hearing impairment, listening skills, sensory integration

Signals to the brain..more on Occupational Therapy




vestibular system




junior seat wedgeWe 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.

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Filed under Bilateralism, cochlear implants for kids, Deafness, Hearing impairment, listening skills, occupational therapy, sensory integration

If we were meant to pop out of bed , we would all sleep in toasters- A lesson in sleep for CI toddlers

sleeping baby

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 ( 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.  ( 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:/  ,  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

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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…..


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A Balancing Act.. the true story of Harry learning to walk


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!


September 13, 2013 · 10:40 pm

making a splash- hearing in the bath

July 2013

July 2013

I remember when Harry was first implanted that the Cochlear Implant Clinic made a strong recommendation that the processors should never get wet. A few months ago, probably around the time the Cochlear aqua accessory was launched, they revised their thoughts on this and talked to us about keeping the processors on in the bath as there were many benefits to hearing while bathing. The Nucleus 5 processor was in fact “splash proof” , they said. Well, I was game to try but splash proof I think must relate to sensible, controllable adults rather than excitable under 2-year-old boys hearing the sound of water in the bath for the first time.! They don’t really correlate. At the time I kept them on with my fingers crossed they would stay dry but alas it resulted in non stop splashes that required more than 1 towel to mop up afterwards. With a swift hand, I whipped off Harry’s headband and popped it in the Breeze Dry and Store product we got as part of our kit. To be honest this is the only time I ever use this gadget to dry off the processors after a bit of over zealous water play… The joy of living in Melbourne I am sure it gets used a lot in the North of Australia!

Harry is somewhat older now and

recently I have noticed he is saying “No” quite defiantly if I take his headband off and he is wanting to hear.

I love this so much as it means , hearing is his preferred status

Can I say that?
With this in mind, I have started leaving the headband and gear on for his bath. I draw up a very small bath ( as in not more than a few centimeters deep) in the hope the less water, the less splashing. Yes I am optimistic! But I am also noticing since we have returned from our holiday that he is listening and responding much better to instructions. I now say ” small splashes only please Harry” and demonstrate what I mean by a small splash ( so not the Alice or Tess version). For a short period of time it works and I can keep him playing in the bath with sound. Really this is a revelation as I always thought water play would be a silent activity for Harry. I am yet to purchase ( click here for demo video) Aqua accessory that Cochlear has put out. It seems to me to be a bit cumbersome and the fact you have to use a new one each time to ensure it stays 100% waterproof appears to be an expensive exercise. So ,I think it is time Jane and I put our thinking caps on again and came up with a Bath/swimming design of the headband. It may be one that uses the accessory, I am not sure but we have a few months till summer hits.

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August 1, 2013 · 9:46 pm

Who was first Keith or Harry? A Rolling Stone fashion dilemma


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.

Ice cream in Cambridge

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

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?Hamley's London

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OT, ST…Occupational therapy and Speech therapy start

ot signOT images

Despite all my efforts to find a “label” to apply to Harry’s delayed motor skills, I can’t seem to find one.    It is not a common issue; he is one in 20,000 with a congenital profound hearing loss, and even less has issues with balance.  It appears that it is a “bi-product”(and that is my own term) of his Deafness.

As you can imagine Readers, having followed this journey for the last year, I have discussed this need for a box or label with which to understand his issue with a number of Specialists- from our ENT, our Paediatrician to our Physiotherapist. But no-one seems to know exactly why Harry has these delays and he is struggling at the moment to stand on his own.

One consistent comment that has emerged through these discussions is that Harry is unable to work out where his body is in space. He requires a lot of sensory input to let his brain know that he is standing, the ground is beneath him and he can move up or sideways or go straight ahead in this space.

Our Physio appointments were only monthly and in between it was up to me to make things happen. It was only Physio that was trying to assist with his gross motor skills. It is like that with everything though- really the parents are the key to the child’s success. What you put in, they get out! I was trying as hard as I could but really everyone was waiting for it to just click into place for him.

OT clip art

So we have been bumbling along since January with Harry cruising around, and slowly getting more confident, but never really being able to go on his own as he couldn’t stand.  Every time he stopped he fell, either on his face or onto a vertical surface he could lean against.

He never starts from standing- he begins his walking experience by leaning against a person or a surface and then launches from there. And this is how he stops. There has to be something there to break his fall. He has not mastered the STOP by STANDING.

This is still where we are at the end of April. So between me, the Physio and the Paediatrician, we decided the only therapy we hadn’t really looked at for this issue was Occupational Therapy. I know nothing about this field. The Physio warned me I might find it “woolly” but quite frankly so was Physio. I was recommended a particular practice not far from home and set about to get Harry started. It took nearly 4 weeks for them to find a therapist that was experienced enough to tackle Harry’s issues. I now know why, as in between I randomly surfed the Web to see who else in Melbourne may have had experience with hearing issues and balance in Kids, phoned around and dragged us all off to see what they had to say. I spend endless nights drawling through reports on the Web about sensory issues and most notably Sensory Integration Disorder. It was the only thing that seemed to be close to what Harry was experiencing. It talked about the use of Occupational Therapy to assist with kids who couldn’t work out where their body was in space. It was not easy reading, as there were a lot of other social issues linked to this disorder, which Harry wasn’t displaying.

Did that mean they were to come- was there still more to unravel? I don’t think so. I think it was an exercise in learning not to self-diagnose.  It can be really soul destroying and ultimately damaging to all the work you have put in thus far.

The story ends well. I have  found a lovely lady who is an OT and has worked with kids with hearing impairments and she seems to know what she is talking about. She spent nearly 2 hours with us on the first visit to assess what may be the cause of Harry’s lack of equilibrium. In that 2 hours Harry had moments of walking without a wobble and it was enlightening for me. By the time I came to see the OT I was at rock bottom. I had convinced myself Harry was suffering from any number of disorders and was not making enough progress. I guess this is what comes of seeing so many Professionals- conflicting advice and opinions, when actually most of them, like us, don’t always know “Why” something is not clicking.

She then requested that we line our hallway , which Harry had stopped attempting to walk down, with rubber mats. The hallway was a means to get around most the house and he either crawled or pushed an object to get down it. When we tried to get him to walk down it alone he belted his head on the hard Jarrah floor so many times he just stopped trying. And who would blame him. This is because he seems to be missing the basic reflex of putting his hands out to save himself when falling. His head always hit the ground first. And with the delay in walking came enough age( or maturity) to know that it was a painful experience and not worth doing anymore.

password harry2011

I have some video with the mats down in our hallway and Harry’s sheer glee at being able to manoeuvre  himself solo for 12m. The first evening he walked up and back about 15 times just to make sure he wasn’t dreaming. The OT made some other requests which I have been doing and altogether I have seen a vast improvement in his steadiness and confidence over this week.

I will add a page into the Blog under Useful Links all about OT so if you think it might be something useful for you to read then it will be there.  We will be going weekly until our trip to the UK in June and so we will see what happens.

OT room


Filed under cochlear implants for kids, Hearing impairment, occupational therapy, sensory integration, speech therapy