Hearing or Deaf Community: CROS aid

OK so those of you who are regular readers of my blog and have read my blog from fairly early on will know that I wrote a blog post quite a while ago now called hearing or deaf community ,as I was confused as to where I belonged and fitted in and also I wrote it because I was curious to see where people would place me  (yes the first time I allowed people to judge me) .Now I thought today seeing as I got a good response on the first one with 3 people telling me where they thought I belonged 2 people said I belonged in the hearing community seeing as I have hearing in my left ear , and the other person I think got a tad confused as to what the poll was asking as they added an additional answer of I’m completely deaf in my left ear, so technically 2 people answered the poll .I also got a comment from someone saying that I belonged in the microtia community , so quite mixed views .

 

I loved hearing people’s opinions as to where they felt I belonged seeing as there is no right or wrong answer and I always find it interesting to hear and to know what other people’s opinions are ,so I thought I would do another one of these blogs to find out where you would place me now that I have a CROS aid hearing aid in my left ear , does this change your views from before? , do your views remain the same perhaps?

 

 

So I’m completely deaf in my right ear due to Microtia and I now have a hearing aid for my left ear due to a hearing loss in that ear ,where would you say I belong , would you say that I belong in the hearing community because I can hear with the support of my CROS aid but however can hear without it in ,just not as well as I can with it in , or would you say I belong in the deaf community because I can’t hear in my right ear and never have and because I now have a hearing aid in my left ear indicating a hearing loss in that ear as well ? ,Or do you have a different view as to where I belong , let me know on the poll below and feel free to leave a comment explaining why if you want to x

 

 

Be True Be You …

So I’ve decided to write this blog purely because I  have been judged most of my life and been seeking acceptance from people and I just feel this is exactly what I’m trying to do at this moment in time and something that I have been trying to do for a long ,long time now .I know how harsh people can be if your different in the slightest whether that means you’re a bigger build than someone else, have a bigger or smaller nose than someone else, your voice is different anything at all and I honestly have found it hard for a number of years now to be accepted for who I am and the way I am and was bullied from year 3-9 exactly 7 years all because of the fact that I was different and I hated how I was treated different because of how I look and the way that I am and it did affect my self-confidence,self-esteem and my self belief and knocked it right down to rock bottom until I had nothing  and I wanted to end my life but thankfully my parents stopped me.Since starting college last year I have found that people have accepted me more than what they did when I was younger,However I do still feel as though I’m seeking acceptance and want to fit in with everyone else because I hate the way people judge in general but more so I hate being judged because I’m different because actually I like being different it’s what makes me ,me and if I had the choice to be born without my medical conditions I’d turned it down because for me personally that person born without the medical conditions and all the hospital appointments and treatments wouldn’t be me and I most definitely wouldn’t be writing this blog let alone even have started it and I am slowly but surely starting to except myself after what 16 years?!  and the I look because it’s who I am .I know people still do judge me and I’m sick and tired of it I just want to be able to live my life and not have to worry about it so I’ve come to the conclusion that I’m never going to be fully accepted for who I am and the way I am and I think perhaps I’m my own worst enemy as I know I judge myself and I think I personally add to the pressure on myself which is stupid.I feel the way I have gained more acceptance is by accepting myself more than I ever have before and starting to be ok with who I am and slowly getting my confidence back as I think without that how could /can anyone else accept me if I don’t accept myself? so I think the first step always has to be self acceptance and realising that actually ok you may be different but things could have been a lot worse than they are and that being different is ok and it’s who you are and I’m no longer hiding who I am and I’ve begun doing more research into my medical conditions and my treatments and what not because it’s a part me and I feel if I understand what’s going on with me it may help me to accept myself and help me to explain to other people so there able to accept me if they choose to but I know not everyone will accept me and that’s fine as long as I’m caused no grief by it :).Never be afraid to be who you are because no one is perfect and nothing is better than being yourself .I know it’s taken me 16 years to work this out and I wish I’d realised it sooner but I didn’t I’m just glad I have now though so I don’;t have to hide behind someone who isn’t me anymore .Which is what I used to do and I hated doing it but I felt it was the only way .However I’ve realised now being myself is the best thing I could do .I’d honestly say to anyone who feels low or hurt because people are judging them ignore those people and be true and be you .As nothing is better than being true to yourself and being yourself and remember there are always people out there who you can talk to about anything like this at all ,there are people who do care and do accept you for who you are and those are the people who matter 🙂

Be True Be You ..Because no one is perfect and nothing is better than being true to yourself and being you

My View On SSD

SSD is also known as Single Sided Deafness and yeah I just thought what with my microtia and my little ear that this was a very relevent blog topic to blog about because you know those of you read my blogs regularly will know how important it is to me to raise awareness of Microtia along with my other conditions and well SSD is a big role player in that because although it’s easy to look at me and see a normal looking teenage girl with two ears no one really knows what’s going on inside of my ear because well technically it doesn’t work but hey if you saw someone who generally looked normal anyway and then they had a normal looking ear and no hearing aid your just going to assume that there is nothing wrong with them right? Well this is actually wrong and very stereotypical and I hate it when people assume just because I technically have two ears although naturally I only have one that I can hear normally which well to me it is normal but to those with full normal hearing it’s not but what bugs me is SSD is so over looked and it’s looked as well it’s ok you can still hear out the other ear , Yes this is very true but the people who say this don’t understand those daily frustrations and those struggles and well SSD is just as important as being completely deaf or any other condition for that matter because yes we still have the other ear to fall back on an rely on but it’s hard at times when you can’t make out where sounds are coming from and so therefore cannot judge for example how far a way a car is but you can hear it and you don’t know where you can hear it from , has the car already gone and you can hear it going up the road? is the car two seconds away from you? is it at the top of the road? where is it and this is one my personal struggles so I will just stand there because well I don’t particularly want to be hit by a car somehow as I’m sure no one else particularly want’s to be .

I hate it when I hear of others similar to me with microtia that only affects one ear being turned down for BAHA’s (bone anchored hearing aids) because they still have their other ear that works which is a true fact but why shouldn’t everyone have the same opportunities and equal rights like everyone else if others in society are able to hear normally why should those with microtia not be allowed a bone anchored hearing aid to give them hearing on their affected side which has been prove to be beneficial to them and help it just annoys me big time because I just don’t get how normal hearing and deafness are recognised but yet SSD isn’t why? it’s in the middle of hearing and non hearing so surely we should be helping these people after all their entitled to it and yeah it just winds me up big time and it winds me up that not everyone is able to get BAHA’s and bone conduction aids to help with their hearing all because of the area they live in and I honestly do feel this should be something which the NHS covers and is available for EVERYONE with microtia because how can you choose who can and cannot have a BAHA or bone conduction aid?

 

An it bugs me when people get annoyed with me because I can’t hear them or I mishear things or ask them to repeat things several times and they act as though I’m stupid or dumb I mean at the end of the day it’s no ones fault that I have a hearing problem and it doesn’t mean I’m thick or stupid because I have a hearing impairment and I just wish people would treat me with a bit more respect and be patient with me and help me the best they can rather getting annoyed and frustrated with me because that doesn’t help anyone it just makes me more annoyed at myself having to say actually I didn’t catch that can you repeat it again and I feel awful when people get annoyed with me because I don’t mishear people on purpose , I don’t choose to not hear things or miss out on conversations or key information but I do and I have to live with that no one else does so yeah just to have people be a little more patient and work with me if I need any additional help with my hearing even by just repeating things in a calm manner even if it is several hundred times would be amazing and greatly appreciated by me

  I also don’t think it is right for people to claim money or benefits all because they have a child who has SSD because you can live a normal life with SSD and in all honestly it doesn’t make you disabled nor does it stop you from doing anything that anyone else in society does ok it may take longer to understand or hear things but so what and in all honesty what is that money or benefits going to do ? it’s not like you can buy something to just magically cure the SSD  no matter what you will always have SSD

 

Although I say this I must admit if I had the choice to be born with Microtia and have SSD  because of it like I was or to be born without microtia and normal hearing like anyone else I would honestly and I’m not just saying this I’d choose to have microtia and to have my SSD why? I guess because it’s how I’ve always known life to be ad actually yeah it can be a pain at times but I love it , it makes me individual and not blend in with everyone else which I don’t think I could ever stand because it drives me mad how much people try to be like one another rather than going actually I don’t care if I’m different I’m just going to stick out like I should because I’m an individual person or whatever

Famous People With Microtia

Ok so I decided to write this blog as part of my Microtia project “wall of little ears” to help show that actually you are not alone with Microtia and that Microtia really doesn’t stop you from doing anything which may sound like a load of nonsense to some people but actually you can do pretty much anything with Microtia and it really shouldn’t stop you from doing anything .I found out after doing some research some great people to mention in this blog who have Microtia some you may expect others you may not.

 

 

Jono Lancaster~

Like most 26 year- olds Jono has a beautiful girlfriend and job that he loves and takes great pride in his appearance. However Jono Lancaster was born with Treacher Collins Syndrome which is a genetic condition which affects the facial bones whilst developing in the mother’s womb and affects 1 in 10,000 in the UK ,Treacher Collins  means that Jono has no cheek bones which causes the eyes to droop, Microtia which causes hearing loss . Jono wears a BAHA (bone anchored hearing aid) and has had several operations due to his Treacher Collins syndrome .Jono used to be bullied at school .Now aged 26 Jono is happy about the way he looks and doesn’t want to undergo anymore surgery and is now a patron of jeans for genes day and goes around schools to give talks about being different,Jono has also featured in a few BBC documentaries such as love me love my face, so what if my baby is born like me which have both been shown in countries such as France, Italy, Australia,new zeland,and even Japan .A year before Jono’s first documentary love me ,love my face hit the screens Jono was just an ambitious man with a dream of raising awareness of Treacher Collins syndrome and was nervous about the documentaries coming out which is to be expected with anything like that (I know I would be) ,However although Jono was going through an emotional point in his life at the time he has been overwhelmed by the response from the documentaries and said the BBC and production team did a brilliant job of the documentary .Jono now has people sharing their stories with him all of the time.Despite still getting negative comments from people over social media Jono says that this has made him more determined to keep on doing what he is doing (good on him) and so to me he is one my idols and role models that I look up to and think that the work he does is amazing

 

 

 

 

 

Paul Stanley~

Paul Stanley is from the band KISS was born with grade 3 Microtia and is virtually completely deaf in his right ear due to his Microtia as there is no where for sound to enter his ear  and in 2009 Paul Stanley was fitted with a hearing aid which has been an ongoing adjustment for Paul as his brain has never had to experience or process sound for his right ear ,Paul found having his hearing aid extremely confusing at first due to not being used to hearing sound with his right ear and described it as suddenly developing another eye in  the back of your head and the feeling of weirdness and confusion of that as you wouldn’t usually have an eye in the back of your head (unless you’re a parent of course) .Paul has now become settled with using his hearing aid and has gotten used to having it and feels it has helped to enhance his day-to-day activities .Paul Stanley is often asked if his hearing loss due to his Microtia has ever impacted on his career at all but he feels it is hard to answer as it’s hard to understand what you have missed out on and you don’t miss what you have never had and describes it as like a blind person seeing colours that’s a very personal thing to them .Paul also feels that he may not hear music how other people hear it but he feels he has nothing else that he can compare it to  nor did he have anything to compare it to for most of his life until now having his hearing aid since 2009 . Paul says that he has never felt a loss of anything .Paul has no sense of direction of where sound is coming from which is a common thing with Microtia but has no issues in mixing a stereo album and can hear the expanse and width of sound but not the direction of where exactly it is coming from .Paul also says technology has changed greatly since he was a young child and says in particular medicine and hearing health advancements and feels that if there is a way to improve your hearing then to by all means take the initive and do something about it .Young and old alike should be looking after their hearing and using earplugs if are exposed to loud noises for prolonged periods of time  because once you lose it you cannot get it back  and also being exposed to loud noises for a period of time such as at concerts then Paul feels that you should keep personal listening devices to safe and acceptable levels as he feels there are better ways to listen to things than to damage your health over it .Paul Stanley also says a very important message that he likes to share which is “to those of you who suffer from a form of   hearing loss ,take comfort in the fact that many, many great people have succeeded in monumental ways without normal hearing ,or any hearing for that matter” and another one is “Hearing loss may be a small pot hole in the road,but that doesn’t mean it should stop you from getting where you want to go.I am living proof”

 

 

 

 

 

 

Sasha Gardener ~

Sasha Gardener is a reality star and model , she stared in the channel 4 programme dumped .Like many people with Microtia Sasha knew her ear was different but it was only when she was bullied at school between the ages of 12-13 due to her ear looking different that she realized just how different her ear actually was .Sasha like all people with Microtia struggled a lot with her hearing and had to constantly ask people to repeat things which she found to be really humiliating and embarrassing so just tended to stop doing this which resulted in her missing out on a lot of conversations .Sasha also had balance issues when she was younger due to her Microtia and fell over a lot but as she got older she learnt not to do that .Around the age of 12-13 she was advised to go and see an ear specialist who told her about her Microtia and the treatment options which were available to her .Sasha wanted to go for surgery but at this point in time she didn’t feel ready .Sasha was upset and also surprised to find how rare her ear condition really was and felt scared about the treatment .Sasha first went to see surgeon Mr David Gault in London at age 15 where he explained all of Sasha’s options to her .Sasha was not impressed about the option of a prosthetic ear ,Sasha’s second option was rib graft which at the age of 23 she decided to go ahead with .Sasha felt scared and worried as this was the biggest decision that she had ever had to make ,Sasha had always wanted ear surgery while growing up but wanted to try to accept her ear how it was and learn to live with it ,when Sasha was younger she didn’t feel ready to put her body or mind through surgery and hence why she decided to wait until she was older to go through surgery.Sasha felt awful when she first woke up from the operation and had a thick bandage around her head  and then the pain started to kick in for her which obviously isn’t ever a nice feeling .Sasha knew it wasn’t going to be easy “no pain ,no gain” was something she reminded herself of.Sasha found that the side of her head, and chest really hurt and she found it difficult to laugh,cough or walk .Sasha didn’t like the fact that the side of her head had to be shaved in the process of the operation , Sasha found the whole process to be really traumatic although says looking back it was the best thing she has ever done and was nervous about appearing on the TV show dumped as she knew she would have to have her hair tied back and everyone would see her ear but she felt ready for that and feels it  has helped her to turn her life around significantly .Sasha says you should do whatever feels right for you personally  and not to be scared and feels her surgeon has transformed her life

Do I Belong In The Hearing Or Deaf Community?

OK so after reading on the microtia support groups and pages about people who are struggling to get BAHA’s for themselves or their kids who have unilateral Microtia because the hospitals there under or the PCT in that area feels that if the Microtia only affects one ear then they don’t need a BAHA as they have hearing in the other ear which is unfair as it can prove difficult having partial hearing and obviously being someone with Microtia I do feel everyone with Microtia who has a hearing loss should be entitled to a BAHA or some form of bone conduction aid/Bone anchored hearing aid as it’s going to help them out and support the hearing they do have .

 

This got me thinking well where do I belong to do I belong in the hearing community because I have hearing in my left ear so I can technically hear as I can hear sounds,voices,tv, you know that kind of thing or would I belong in the deaf community because of my hearing loss in my right ear due to my microtia because my microtia means I only have one ear and I cannot hear in my little ear at all and although I do have hearing in my left I still struggle with background noise , and that kind of thing and there is no in-between community so which would I be homed in ? I mean I don’t even know which community I would put myself in because I can but I can’t hear so I thought I’d pass this one over to you guys so what do you guys think where would I be hearing community or the deaf community ? I’m interested to know and then does this mean to say others with unilateral microtia are also classed as the same , it’s a tough one to decide on I know so how do we decide who is deaf enough for BAHA’s and bone conduction aids? let me know by comment and poll what you think 🙂

 

 

 

 

 

Microtia Doesn’t Stop You Doing Anything!

OK so Microtia is a congenial birth defect/deformity of the ear(s) which can come in four different grades , grade 1,grade 2,grade 3, and grade 4 and causes a hearing impairment/loss and yeah this blog basically is about showing you that Microtia really doesn’t stop you from doing anything at all and you honestly can live your life exactly how you want to or any lifestyle for that matter you can be a signer,dancer, gymnast, author,teacher,nurse,dog trainer,actor,actress,model , and so on there really are no limitations to what you can do with Microtia every door is open to you ok your ear may look a little different but surely if I dunno you had a bigger nose than someone you knew that’s not going to put you off of doing anything with your life is it ? so why should you allow microtia to stop you from doing anything? Ok so our hearing isn’t as great as other people’s but there’s nothing we can do about it , it’s not anyone’s fault that we have microtia or the hearing loss that goes with it all we can do is embrace it and get on with life with it because there really is no point in thinking about the what if’s or anything nor is there any point in crying over spilt milk what’s done is done and there’s nothing we can do about it , it’s just a part of who we are and there is absolutely nothing wrong with who we are .Being who you are is the best thing anyone can ever do .Some examples of people with microtia who haven’t let it stop them from doing what they want are Jono Lancaster who has treacher Collins syndrome and as a part of his treacher Collins syndrome has bilateral microtia and wears two BAHA’s and is a well-known TV personality doing documentaries about who he is to help raise awareness and supports charities such as jeans for genes days, gives public talks in schools about his conditions and is also a part-time model so hey he really hasn’t let it stop him from doing what he wants and good on him for that it’s really admirable when someone can say hey ok you know what I was born different but I’m still going to do what I want to do anyway just to prove I can and will do it .Alex Million also has microtia and has proven you really can do anything with microtia as he appeared as an extra in the TV series Vera .so don’t let microtia stop you from doing anything no matter what anyone says you really can do anything you want to do even if we do have to work harder to get there and prove to people we can do it

School changes …

Ok so you may remember me mentioning in one of my blogs about how my school and 2 other schools in the area were going to be becoming joint academies because you know , you couldn’t have one academy and two schools in the area as the greatest if not everyone is going to prefer to go to an academy rather than your bog standard school aren’t they ? So yeah all 3 secondary schools in the area including mine had to change to an academy which all sounded exciting and what not but actually it wasn’t a good change at all in my honest opinion and I did find it hard to adjust from the school I had been in for 3 years now and ok had a fair few problems in it with bullying and what not but I loved that school the head teacher Mr Canty everything about it and I didn’t realise how much I did until it was taken over by a new head ,new staff, new uniforms new everything really and it wasn’t great all it had all gone completely down hill and I didn’t like the change in all honesty but I didn’t want to be a wimp and what not so didn’t say anything thinking I was just being silly but I wasn’t the school was now supposed to be a lot better as it was an academy  but sadly to say it went the complete opposite way and was wayyy over the top and silly rules came into place like boys were not allowed to shave their hair or give it a number 2 all over , girls were not allowed to dye their hair, have highlights in their hair,different colour hair such as pink etc, not allowed to wear hair accessories  not allowed to wear excessive makeup and to be honest all individuality of students was taken away from us because ok fair enough we had always worn the same uniform but by having our hair accessories and what not it made us individual rather than clones of each other an each day their would be a more stupid rule in place and just stupid things and kids getting in trouble for the most pathetic things like detentions because their shirts had come untucked or they were wearing a coat because it was cold outside or whatever it was stupid and because before when it was a school you could buy passes so you could leave the school premises at breaks and lunches this was also taken away an instead we now had a brick wall all the way around college and the only way of getting out was through either a big metal gate that was locked during the day or two security doors that were set for certain times to be opened an if someone tried to open them before these times alarms would sound and it was just so silly and was more like a prison no one liked the change at all the only thing I will admit I did like was the colour had changed from a hideous yellowy colour to a royal blue although I disliked the piping around the collar of our blazers .They also thought by putting those walls up you would feel safer in school well actually I felt the opposite I felt trapped and not safe in the slightest and it was awful also you had silly yellow lines around the school which meant you were not allowed to go in those areas or cross the line or you would get a detention it really was ridiculous and over the top and yeah I completed hated it , one minute it was as though it was a secondary school then into an infant school/ prison .I mean seriously they felt they couldn’t trust any of the students in the school to do anything , they even hired staff whose job was to just walk around the school and look out for people out of class when they should be or who left class early even if it was just to go to the toilet and would catch them an then take them off to go and talk to them and if someone was misbehaving in the class they would have to be called in to come and collect them which kinda sounds like a good idea but it wasn’t as it just caused more classroom disruption rather than less and yeah so it went on

Bullying Of Another Kind…

Well if you’d thought I’d had enough bullying to last a life time then I’m sorry to say but your wrong although I wish you were right ,sadly there was yet more bullying to come my way and well I suppose at least you could say possibly that these bullies were original :S as this was not in school bullying it was in fact an attack of cyber bullying which means bullying over the internet,text , phone etc basically I suppose you could call it indirect bullying as it’s a form of bullying done without seeing the person

 

It  all started off as a  normal evening after school when I logged into my laptop and signed into MSN and Facebook unknowingly knowing I was about to become a victim to cyber bullying and two of my friends who had never expressed and problem or issue with me before instantly popped straight up on chat on MSN and started talking to me ok fine nothing wrong there but then it began starting to type abuse to me and nasty messages and i tried to ignore it by leaving the chat but every time I did they were popping back up pulling me in for yet another round of  abuse and then after a while of me pulling myself out of the conversations they tried to do it individually so one of them would try to talk to me on my own and try to blame it on the other before saying more nasty things and roping the other one into the conversation obviously I was really upset about what was happening and couldn’t believe or understand how or why it was happening and the only thing I could think was that there accounts must have been hacked or something but sadly not it really was them and I knew in school they never said a word and I knew I had to get proof of what they were really like so the rest of the class would know so I began adding everyone from my class at school into the conversation so that they could witness it for themselves and read the messages I was being sent but even so they still couldn’t and some of them even didn’t believe it and said how it wasn’t them and there accounts must be hacked as they would never do it face to face which I admit no the pair of them would never have the back bone to ever do or say any of that to anyone’s face which was the hardest part to face I mean I’d now got used to being bullied at school but now my private life and my safe place where I could escape the bullies(home) was now being taken over by the bullies and I really didn’t know where else I could turn as usually I’d come home to escape it but now I was at home was I supposed to go to school instead as a role reversal ? well funnily enough this was exactly what dad wanted to do was print all of the conversations from them off and take them into school and give them to my tutor to read even though I actually begged him not to and said how it had nothing to do with the school and they wouldn’t or couldn’t do anything as it had happened out of school (small minor incidents not bullying had happened out of school before and I’d been told had nothing to do with the school as it happened outside of school) but I was actually pleasantly surprised when the school did deal with it and my tutor sat and read over all of the messages I was sent and was horrified by what she had read and so she actually spoke to our class the next day having a go about how she was really disappointed that there were students in the class picking on others in the class and how we had been such a close group and why was it happening and read out some of the comments including mine as I turned round and told one of the girls she was spotty as couldn’t think of any other come back and that’s what mum told me to reply as she was standing watching the messages pour through as well as this my dad actually rung one of the girls parents and had them round to show the messages to on our computer and was going to go round the other girls house but her or her sister faked to be her mum pretending to have been really ashamed of her daughter and how she would be in trouble for it but obviously she didn’t I don’t actually think either of the girls did until it was taken to my tutor to sort out and I was told if it happened again due to the content of the message it could have actually been taken to the police but we didn’t that time but if it happened again to go straight to them with it because things got so bad in those messages and yeah it was basically two against 1 the whole way through so this was an awful experience to now know my home life was being over taken by the bullies was I not safe anywhere now ?