Over the last few months we have written regularly about Leo’s Hearing Loss and his Assessment Process for Cochlear Implants at London’s St Thomas Hospital.
To say that this journey has been emotional is an understatement and it has also been stressful for Leo. It is a journey that has taken longer then we expected, however since we last wrote we have had some huge developments and his journey has moved forward significantly which has been a good yet stressful and emotional time.
As mentioned in our last post Leo was offered Cochlear Implants and was expected to under go implantation at some point during November. However on a recent appointment we were told that because Leo didn’t completely fit the NICE guidelines for Implantation then there could be a funding issue. Leo’s Hearing was 5db above the guidelines in one ear. To say that this appointment was emotional would be true however those emotions ran high a couple of times with tears of frustration and numerous questions on what the next step was and what sort of funding might be obtained to allow the operation to go ahead.
Since then Leo has had his operation and although the actually surgery went well his recovery wasn’t as smooth as planned but he was up and about and discharged the next day which was good.
Over the past few weeks he has coped remarkably well considering he has had little to no hearing, he has attended preschool with no problems and has just gotten on with life like the Leo we love.
Leo has now had his switch on and has adapting to wearing processors, however I will write more about that just after Christmas once he’s had a chance to wear them a little longer.
In life we all take our hearing for granted assuming that the hearing we have won’t deteriorate as we get older and to be honest we tend to have a habit of abusing our ears to an extent that it can and has caused hearing loss in people of all ages.
Growing up I almost never thought about my hearing and ears or about protecting something that is, to be honest, something that we use everyday without giving it a second thought. I would play loud music that left my ears ringing, ride on rollercoasters, watch fireworks (listening to the loud bangs) and many other things that impacted on my ear drums and just carried on with out thinking about the level of noise.
When I met Keighley one of the first things she did was to make me aware of her hearing loss and over the last almost seven years I have become aware of the struggles a hearing loss has on someone and as a result I am acutely aware of the struggles that Leo will have as he grows up.
As we are aware of the problems hearing loss can cause we always make sure to protect the kids ears where possible to unusually loud noises. For the last two years we have gone to the American Speedfest at Brands Hatch and have made sure that where we can we protect their ears, for example Oliver and I have been lucky enough to ride on a Monster Truck and they give out ear defenders for all children. We always take them and make sure Oliver is wearing them, it amazes me how many parents don’t worry and then their kid sits there with their hands over their ears for the entire ride.
This weekend will be no different, Oliver isn’t overly fond of the loud bangs that fireworks make, so he will be wearing the ear defenders that we were kindly given by Action on Hearing Loss. I know that some people think that ear defenders are overkill but as I said Oliver doesn’t like the loud bangs and if they give him the ear protection as well.
If you are looking to protect yours or your little ones hearing ear defenders are readily available from various retailers. This was a post about hearing loss in conjunction with Action on Hearing Loss. The above is our true experience and feelings and not influenced by Action on Hearing Loss.
Last night I started on a thirty week course to learn British Sign Language or BSL for short.
As regular followers of this blog will know both Keighley and Leo have a hearing loss and although Keighley lip reads Leo is still young enough to need the extra assistance to communicate with other people. Following a point around last Christmas where Leo wanted something and couldn’t communicate what it was which led to him having a melt down and our realisation that he needed another form of communication beyond speech.
After the melt down we decided that we were going to teach Leo some basic sign language signs that he would need and be able to use, things like Please, Thank You, Eat, Drink, Milk, More and a few more. Over the last few months we have added some signs to his vocabulary and his speech has come on a little as a result of us using the same signs on a daily basis.
While we have been learning basic signs with Leo it led Keighley and I to develop a bigger interest in learning more of this language form. This led to us attending a taster session back in May and then myself enrolling on the course that I started last night.
Last night we did all the introductions and stuff that people do on a first lesson and then we went on to learn the Alphabet through finger spelling and I can now spell a whole host of words via finger spelling, including my name, kids and wifes name and place where I live. I had a really enjoyable time and learnt a lot and I am looking forward to next weeks lesson.
The day before we jetted off to Athens to visit family we had another appointment at St Thomas’s as part of Leo’s Cochlear Implant assessment.
Following on from the last appointment where we had been asked to practice a new testing technique with Leo and develop that.
During the appointment the audiologist tried a the testing technique with Leo that we had been practicing and to start with he was doing exactly what he was meant to do, which was place a figure in a boat every time he heard a noise. However due to his age after a while he lost interest and just wanted to play what he wanted to play.
Around this time however the audiologist needed to go and get some extra equipment and left us in the room with Leos hospital speech therapist who watched Leo as he played and also spoke with myself and Keighley on how we thought his speech was developing, after a while she stated that although Leo knew exactly what was happening however apart from the occasional word we as adults weren’t really aware of what was happening to the toys and what their adventure was.
Following all the hearing tests we spoke with both the Audiologist and Speech Therapist and they said that they had a joint meeting coming up where they were going to discuss Leo and decide on the next steps to be taken however they both stated that there had been very little speech development since the last meeting back in April and they were hinting that they would be pushing for Leo to proceed with Cochlear Implant Implantation.
Since the visit the team at the hospital have had their meeting and via a phone call have confirmed that Leo has been offered Cochlear Implants and will under go surgery before Christmas of this year, most likely early to mid November.
Today Leo had a follow up appointment at St Thomas’ after his three month referral back to our local hospital for further hearing tests. During the last three months it looks like, from the hearing tests that Leo might well have had a further loss in his right ear, however this wasn’t confirmed today as he wasn’t testing well. Unfortunately Leo has reached the age where the sound and turn method doesn’t work anymore.
What’s the sound and turn method? I hear you ask… well it is basically what it sounds like. The audiologist plays a sound into Leo’s ear and if he turns towards the sound he is rewarded with either, in our local hospitals case, a dancing (and honestly quite freaky) puppet, or in St Thomas’ case, an image of a cartoon character on a screen. This works fantastically with younger children but Leo has done this test so often it now bores him after a while and he becomes engrossed in either the toys in front of him or pulling the testing equipment off himself. So today they have introduced a new way of testing him which requires him to hold a little figure and when he hears the sound to drop it into a pot. This is going to require practice as although he seems to get the idea of the exercise the patience of the waiting isn’t quite there so we need to train him to do it.
Due to this stage we are at the audiologst has said that they are possibly going to consider a test called an ABR. This is something we really wanted to avoid as it requires Leo being put to sleep and electrodes placed on his head to get the readings they are after. Although this will get the results they are looking for it would have been better if we had been able to get those same results by the other tests.
Today marks the end of Deaf Awareness Week. During the last week we have had a number of posts from some great bloggers. We’ve covered everything from Baby Sign through to Facts and Figures from Action on Hearing.
I would like to thank our guest bloggers who are either themselves featured in the photo above or their children are.
You can read this weeks posts by clicking the links below:
Originally posted in May last year
Written by Keighley Miles
May plays host to Deaf Awareness Week (2-8) May and they are celebrating 10 years since the launch of new-born hearing screening (NBHS).
This is something that is close to our heart because it was during Leo’s New-born hearing screening there was fears raised about his hearing.
I (mum) have decided to write a bit about our families journey so far..
As mentioned above Leo failed his NBHS when he was hours old which came as a great shock even tho I am profoundly deaf myself I was always told that it was due to a childhood illness and that it wouldn’t effect any children I had. Our first born Oliver passed with flying colours so I was expecting the same for Leo.
With the NBHS you get the results in a matter of minutes they put some little headphone looking things in their hears and take some readings. When Leo’s came back as a fail we were quickly given facts and figures about how many babies failed the test but then go on to have nothing wrong with their hearing and at the same time given an appointment to return in two weeks time where they would recheck his hearing doing the same test.
As anyone knows the first few weeks of life with a baby are a blur but getting him home I remember deep down I knew he would fail his second test but tried to keep positive and hope that he was in the high percentage of babies that went on to pass.
We returned to the hospital a few weeks later to be met by the same lady. It soon became apparent that he was going to fail this test too and she finally told us she had to refer him for more testing.
I would like to say my tears that day were because of my hormones (which didn’t help) but truly I was devastated. Once again we were told that a high percentage of babies go on to be fine and have normal hearing but at this point I knew, it was too much of a coinicidence given my hearing loss.
We were told an appointment would be sent in the post but because of how upset we was the nurse phoned and got us an appointment for a week later (thank you).
This week was spend fending off peoples well meaning advice and well wishes which although meant in good nature to try and keep us positive we (i) could have done without having to repeat to people that the chances are Leo was deaf.
When the appointment came round my mum came with me while Richard looked after Oliver. We were shown to the room and very quickly Leo was hooked up to the computers and the testing started.
Even now I remember the moment when I knew and the last bit of hope I had was put out. We weren’t that much into the testing and the audiologist left the room to get a pen. Something simple and most people wouldn’t think twice about but I knew because whenever I had my ears tested (100’s of times over the years) I have seen my audiologist dot down on their pads at what level I heard a sound and what sound/ level to recheck. So I knew he had come across a sound that needed rechecking therefore a sound he couldn’t hear at all levels.
I couldn’t say anything because you have to be quite while they are testing, so you are just sitting in silence watching it all unfold. It was when Leo started stirring, the baby needs to be a sleep for the test that, I could finally speak and ask the dreaded question “so how’s it looking so far?” Of course I knew, he knew I knew so after a weak go of trying to fob me off with “let’s complete the test then we will talk” he told me there was some hearing loss.
*more tears from me*
Once the test was completed it was an overload of information about people we would be seeing, appointments we needed to attend then I had to choose which hearing aids Leo was going to have and what colour they were going to be.
Leo was checked over by the consultant and I was asked loads of questions regarding my own hearing (thank god my mum came) a chart was quickly drawn up showing where Leo’s hearing sat in the “speech bubble” then lastly Leo had his ear moulds taken and we were asked to return in 3 weeks for them to be fitted. The drive home was silence until I step into my house and saw my husband making the tears flow again..
Why the crying..
I was and still am often told that “you know Leo will be fine because look at you, you cope well”
“your lucky you have been thru it, you know what to expect”
“there are worse things he could have wrong”
“things have improved since you were young”
All this is true, but having been thru it makes things worse plus I have never been the mum.
Yes people might think I’m fine now but growing up I never knew I would be “fine” and what even does “fine” mean? I left school without any GCSEs because I fell behind after not having enough support in school. I struggle in loud social situations to communicate with people so tend to avoid them. Doing some simple tasks are long and drawn out because I am unable to hear on the phone. For example I can’t just ring and make a doctors appointment I have to wait for my husband to do it or go down to the doctors. These are a very small sample of things I struggle with, I know they are not life limiting and people go thru worse things but they are not what I would choose for my son if I had the choice.
And yes I have been thru it. I have been thru peoples small mindness and peoples total lack of knowledge towards deafness ( no shouting won’t make me hear you) people telling me not to worry the 3rd time I have not heard what they are saying, people laughing at me mispronouncing something. People forgetting and talking when your not looking, again not something I would choose for my sons and not something I want my son to experience but Leo will experience this but hopefully with mine and his dads support he will cope better, brush off people’s comments better and be “fine” like so many people tell me I am.
I have read countless post on support pages, on blogs where people have experience the things I don’t want Leo to experience the things that have meant to have improved since I was younger. So the tear was because of this not because he was deaf because the world we live in at the moment has no deaf awareness making life ten times harder then it needs to be.
The first few months was dark. I uttered these words and meant them ” if I knew I would pass my deafness on to my kids I wouldn’t have had kids” but now I look at Leo who on the whole is such a happy, strong willed boy who brings so much laughter to our home along with his brother Oliver And already is stubborn and can stick up for his self and I couldn’t imagine life without them and yes leo will have some tough times but with with us around him and the support from our family and friends we will help him tho them. A year on and Leo has a great network of professionals around him helping him every step of the way ready to step in as soon as he shows any signs that his falling behind with his hearing/speech skills. They might just be doing their jobs but to us they are more like friends and a soundboard where we can say all our worries and fears. Just like my audiologist is to me. They really are a great bunch. His hearing aids spend more time in his mouth then in his ears but I’m told this stage should soon pass I’m hoping it happens sooner rather then later. The appointments are slowly cutting back sometimes we go two/three weeks without a appointment sometimes we have two in a week. I would just like to say here
Thanks to my mum for going to all my appointments with me up until I was well into my mid 20’s I would like to say without moaning but it was non stop moaning lol but now I understand why she had over 20 odd years of the appointments. I have only had a year of them lol.
For now Leo is thieving, I don’t want him to feel ashamed about his hearing aids so it’s made me much more open about my CI I don’t think twice about wearing my hair up something I wouldn’t do before Leo was born because it meant you could see my CI And speaking out more against rude people trying to educated people.
The next fight in the battle will be when he starts nursery/school but we will deal with that when it comes on doubt there will be many more tears but we will deal with them..
Did you know that in 2015 over 11 million people in the U.K. had a hearing loss of some description, that’s equivalent to 1 in 6 of us and that by 2035 that number is expected to rise to 15.6 million or 1 in 5. That number is just staggering when you actually stop to think about it. In fact most people probably know someone with a hearing loss of some description, either being from natural loss due to old age or someone that was born with a hearing loss.
1 in 6 of the UK population are affected by some form of Hearing Loss
– Action on Hearing : Hearing Matters
Of the 11 million who have a hearing loss around 900,000 people have severe or profound deafness, at least 24,000 of whom use British Sign Language.
People with hearing loss are less likely to be in work and hearing loss often means people having problems finding a job, fulfilling their potential at work and staying in work. This is due to a number of factors, however a major one is employers attitudes towards hearing loss and this needs to change.
In 2013, it is estimated, that the UK economy lost £24.8 billion in potential economic output because too many people with hearing loss are unable to work.
– International Longevity Centre UK, 2013 – Action on Hearing: Hearing Matters.
However change does seem to be happening with advances in hearing aid and assistive technologies, together with new technologies like Speech to Text, barriers do seem to be being broken down in regards to communication for people with hearing loss. Also there is rapid progress being made in the understanding of the biological causes of hearing loss, things such as Genetic Testing and MRI Scans have given better understanding. It is believed that by 2020, with proper investment, treatments for Hearing Loss and tinnitus could be available and that cures could be available within a generation.
For more information on Hearing Loss and Action on Hearings Hearing Matters Study please click here