10th May 2015
Well, what an amazing week it's been for our family - Our New Ears, Carol Flexer seminar in Dublin, NDCS Understanding Deafness course in Mallusk, Fundraising abseil for Sound Friends in Belfast and then all the other normal family things that continue to happen no matter how busy life gets!
Since so much has happened this week and I have been blogging a lot, I thought I would use tonight as a summary of the week, hope that's ok?!
Monday - day 1 - I started the week thinking back to Princess's diagnosis, how we felt, how we dealt with it and where we found our support
Tuesday - day 2 - some information on hearing aids
Wednesday - day 3 - some information on cochlear implants
Thursday - day 4 - information on sign language and the Deaf community
Friday - day 5 - previously, the highly of my week - the seminar in Dublin with Carol Flexer
Saturday - day 6 - bit of a messy one I feel, info on how we feel now about deafness
Sunday - day 7 - the highlight of my week!
What an appropriate week for us to undertake a fundraising challenge for our local Deaf Children's
Society, Sound Friends (local parents support group of NDCS). Today, 37 wonderful volunteers, abseiled down the Europa Hotel in Belfast, to raise some vital funds and at this present moment the total stands around £5000 with lots more money to be received.
My husband and I decided to take part in this challenge in support of Sound Friends, without whom we would be floundering emotionally and confused with regards to the future of our daughter. The big problem with us signing up, was that we are both terrifyed of heights! Neither of us a able to even stand on a stool without getting nervous, so this was a massive challenge!
Nerves were doing pretty well until we arrived at the hotel and made the mistake of looking up - wow! That's one tall building!
Anyway, we got our good luck messages from our merry band of supporters and headed for our safety briefing, then we were kitted out and onto the roof we went.
The weather improved slightly for us and it stayed dry for a while.
James was really nervous but managed to psych himself up to get "over the edge" and seemed to speed down the side of the building.
For myself, on the other hand, it took a lot of persuasion and negotiation skills from my rope man, to help me take those first few steps. I was terrifyed, in fact, I think now, almost 12 hours later, I am still shaking! My descent was slow and my arms ached cause I was holding onto the ropes so tightly. By the end I was absolutely exhausted and my legs had turned to jelly, I actually finished the abseil by lowering myself onto the ground into a lying down position and lay there with my eyes closed while I was disconnected from the ropes. However, I am very proud of my accomplishment and even prouder of the amounts we managed to raise for Sound Friends.
Tonight, I am thinking back on this week - I am inspired by the things I have learnt, the people I have met and the things I have done.
Learning points:
* your ears are the doorway to your brain
* singing helps your child access both sides of their brain at the same time, whilst also accessing maximum frequency range; also helping to develop competence with rhyme and rhythm - a lot of kids who have problems with literacy, have problems with rhythm
* princess starting to sign more new words, blow kisses and take weight in her legs
* everyday activities can be the best therapy provided they are enriched with quality communication
New people:
* Team from Our New Ears and other people at seminar
* kind volunteers who abseiled with us today
* other parents at the NDCS event
* the lovely man controlling my rope for the abseil who was signing with me as he is learning too
* the deaf role models at the NDCS event
Achievements:
* abseiling!!
* pressing in with more signing in both my classes
* getting my blog shared on Our New Ears and a couple of business websites
* fitted two or three weeks into the last one!
* having my blog read by loads of people every day and hearing that it has helped a few other parents
Yesterday, at the NDCS event, we met two deaf role models and I was overjoyed to see two amazing girls, in their 20s, who have succeeded in their studies & turned into fabulous young women. Although both girls had a different experience with deafness, to either let a hurdle stop them doing anything they wanted, instead, they jumped the hurdles and pushed on every time.
The first girl, was a university student, on the verge of finishing her Degree and in process of finalising her Masters programme. She was profoundly deaf and wears one cochlear implant, which she received when she was 3 years old. As she wears her implant under her beautiful curly hair, it couldn't be seen and with there crystal clear speech, you could easily forget, or not even notice that she was deaf. her passion for product design to help people with disabilities, was inspirational and she obviously has a very bright future ahead of her.
The second girl, was profoundly deaf, but as hearing aids and cochlear implants didn't work very well for her, she mainly communicates in sign language. She had also been really successful at school and now works with Action Deaf Youth, which we will join once Princess is old enough.
Meeting these two girls (and another father in the group), allowed me to talk about therapy and learning sign language - fabulous information and a huge alleviation of guilt and pressure I feel resting on my shoulders.
It's always great to hear from other families, but so wonderful insight to get the views of someone who is the "deaf child" isn't he family & here what was good, what was bad, so I got loads of tips.
I hope you have enjoyed reading my posts this week, I have enjoyed writing them although, I wish I had more time to include more information. Anyway, I will be continuing to write about our family's journey with cochlear implants, deafness and sign language, I would for you to follow me and continue reading.
Goodnight,
Sara xx
Monday 11 May 2015
Saturday 9 May 2015
Deaf Awareness Week 4-10 May, day 6
9th May 2015
I can hardly keep my eyes open to write this, so please accept my apologies for spelling mistakes or meandering around the subject!
Tonight I thought I would like to talk about how we view Princess's deafness and our hopes for the future.
Princess was diagnosed as profoundly deaf at 6 weeks old - it was a massive shock to us, we hadn't a clue, we were so sure she was hearing her brothers coming home from school! Thankfully, with loads of wonderful support from family, friends, Sound Friends, NDCS etc, we have come to terms with Princess's deafness and although at the moment I feel that's its really hard work, it will be worth it!
Hearing aids didn't work and Princess got bilateral cochlear implants inserted in January and they have now been switched on for approx 11 weeks. Progress is great, we have noticed lots of vocalisations (constant shouting most of the time), some copying noises and so much communication between us all.
Whilst princess is definitely developing her listening skills and can follow simple instructions and response appropriately indicating that she can hear it and process it.
We have also been learning sign language (BSL) and I am very proud to say that Pricess has just started signing back to us - food, more. We wish for her to be bilingual and so this is wonderful news for us.
Due to my extremes exhaustion, I am going to bid you goodnight,
I promise to check in again tomorrow for the last day of my daily blogs for deaf awareness yet.
Saz xx
I can hardly keep my eyes open to write this, so please accept my apologies for spelling mistakes or meandering around the subject!
Tonight I thought I would like to talk about how we view Princess's deafness and our hopes for the future.
Princess was diagnosed as profoundly deaf at 6 weeks old - it was a massive shock to us, we hadn't a clue, we were so sure she was hearing her brothers coming home from school! Thankfully, with loads of wonderful support from family, friends, Sound Friends, NDCS etc, we have come to terms with Princess's deafness and although at the moment I feel that's its really hard work, it will be worth it!
Hearing aids didn't work and Princess got bilateral cochlear implants inserted in January and they have now been switched on for approx 11 weeks. Progress is great, we have noticed lots of vocalisations (constant shouting most of the time), some copying noises and so much communication between us all.
Whilst princess is definitely developing her listening skills and can follow simple instructions and response appropriately indicating that she can hear it and process it.
We have also been learning sign language (BSL) and I am very proud to say that Pricess has just started signing back to us - food, more. We wish for her to be bilingual and so this is wonderful news for us.
Due to my extremes exhaustion, I am going to bid you goodnight,
I promise to check in again tomorrow for the last day of my daily blogs for deaf awareness yet.
Saz xx
Friday 8 May 2015
Deaf Awareness Week, 4-10 May, day 5
8th May 2015
Wow, what a day, I am exhausted but very satisfied.
Today, I attended a seminar in Dublin, hosted by Our New Ears/Deaf Hear, facilitated by Carol Flexer, American Audiologist & AV therapist. What an inspirational and knowledgable woman, I feel very privileged to have met her and got a glimpse of her wonderful expertise.
The day was about helping our children to develop their auditory brains & there was so much information, I can barely do it justice, but I will give you a little flavour to wet your appetites.
Carol's opening statement was to ensure that we knew how we hear, now most people think we hear with our ears, but we don't - we hear with our brain. Our ears are simply a portal for getting auditory information into our brains, much as our eyes are a portal for visual information or our noses for smells. She emphasised that although our brains contact a huge amount of auditory tissue, it will only be develop if activated by sound and so early diagnosis and provision of appropriate hearing technology is of upmost importance. In fact, she said that hearing loss is a neurobiological emergency!
To remind us all how important using hearing technology is, she stressed that "what goes in is what comes out" so we need to put in high quality, intelligible sound, in order to get high quality, intelligible sound out. Our brains are programmed to receive information 24/7, that is why we don't have "ear lids" but yet we do have eyelids, thus reinforcing the importance of auditory input. But of course, we know the importance of hearing, we need to know how to maximise the information we are putting in there.
She gave some advice on growing our child's brains:
* talk constantly about what you are doing and thinking (increases knowledge of vocabulary and thought processes)
* create experiences and then discuss them
* use complex language, explain it and then link it to experiences
* read at least daily, some text that is above the child's linguistic level
* play board games
* sing, dance, use musical instruments
* avoid performance based activities eg questions, try making statements and allow the child to respond if they want
Tips for Talking included:
* talk lots
* talk about your thoughts (help your child understand why you are sad, cross, happy)
* include prepositions to increase grammatical structure
* talk in full sentences
* discuss sequences and what happens if the sequence if s performed differently
ALWAYS SPEAK SLOWLY & CLEARLY - clear speech can improve the listeners speech discrimination by up to 40%, whilst slowing down allows thinking & processing time.
Remember that although early diagnosis is a wonderful gift and can enable our children to reach age-appropriate speech and language by 4-5 years old, but if we don't continue to practice, they will remain static or even backtrack in their progress. Our children will need to do pre-reading before class and be intentionally taught new vocabulary & grammatical rules as, no matter how well the technology works, they will never be able to "overhear" all of the auditory information that a hearing child would. Continuous input is vital to continue growing the child's brain, just like a professional sportsperson still continues to practice hard to stay on top of their game.
I am so excited to have received so much valuable information today and look forward to using some
of Carol's tips with my daughter and son, then seeing the affects it has in the future.
Thanks for reading,
Goodnight,
Sara xx
Wow, what a day, I am exhausted but very satisfied.
Today, I attended a seminar in Dublin, hosted by Our New Ears/Deaf Hear, facilitated by Carol Flexer, American Audiologist & AV therapist. What an inspirational and knowledgable woman, I feel very privileged to have met her and got a glimpse of her wonderful expertise.
The day was about helping our children to develop their auditory brains & there was so much information, I can barely do it justice, but I will give you a little flavour to wet your appetites.
Carol's opening statement was to ensure that we knew how we hear, now most people think we hear with our ears, but we don't - we hear with our brain. Our ears are simply a portal for getting auditory information into our brains, much as our eyes are a portal for visual information or our noses for smells. She emphasised that although our brains contact a huge amount of auditory tissue, it will only be develop if activated by sound and so early diagnosis and provision of appropriate hearing technology is of upmost importance. In fact, she said that hearing loss is a neurobiological emergency!
To remind us all how important using hearing technology is, she stressed that "what goes in is what comes out" so we need to put in high quality, intelligible sound, in order to get high quality, intelligible sound out. Our brains are programmed to receive information 24/7, that is why we don't have "ear lids" but yet we do have eyelids, thus reinforcing the importance of auditory input. But of course, we know the importance of hearing, we need to know how to maximise the information we are putting in there.
She gave some advice on growing our child's brains:
* talk constantly about what you are doing and thinking (increases knowledge of vocabulary and thought processes)
* create experiences and then discuss them
* use complex language, explain it and then link it to experiences
* read at least daily, some text that is above the child's linguistic level
* play board games
* sing, dance, use musical instruments
* avoid performance based activities eg questions, try making statements and allow the child to respond if they want
Tips for Talking included:
* talk lots
* talk about your thoughts (help your child understand why you are sad, cross, happy)
* include prepositions to increase grammatical structure
* talk in full sentences
* discuss sequences and what happens if the sequence if s performed differently
ALWAYS SPEAK SLOWLY & CLEARLY - clear speech can improve the listeners speech discrimination by up to 40%, whilst slowing down allows thinking & processing time.
Remember that although early diagnosis is a wonderful gift and can enable our children to reach age-appropriate speech and language by 4-5 years old, but if we don't continue to practice, they will remain static or even backtrack in their progress. Our children will need to do pre-reading before class and be intentionally taught new vocabulary & grammatical rules as, no matter how well the technology works, they will never be able to "overhear" all of the auditory information that a hearing child would. Continuous input is vital to continue growing the child's brain, just like a professional sportsperson still continues to practice hard to stay on top of their game.
I am so excited to have received so much valuable information today and look forward to using some
of Carol's tips with my daughter and son, then seeing the affects it has in the future.
Thanks for reading,
Goodnight,
Sara xx
Thursday 7 May 2015
Deaf Awareness Week 4-10 May, Day 4
7th May 2015
Well, I have managed to write four days in a row, which is quite an achievement when I look at my diary, but then I always can make time for things that are important to me. Deaf awareness has become something I am very passionate about since my daughter's diagnosis, mainly because we knew nothing until deafness landed on our doorstep and I assume many of you were the same.
Today's topic is British Sign Language (BSL), or any sign language really. Did you know that there are 130 recognised deaf sign languages throughout the world - Wow!!!! However, in general most sign language users can understand people from different countries much easier than those of us relying on spoken language (so I am reliably told!).
People chose BSL for many different reasons: there are families like mine who have one deaf member. We have chosen to be bilingual (BSL & English) to allow our Princess to chose for herself when she is old enough, whether or not she wants to use her cochlear implants, use her voice or rely on sign. We believe that giving her as many communication options as possible will allow her better access to education, easier socialisation with her hearing & deaf peers and also decrease her frustrations caused by communication difficulties. At this time, when we are all starting our BSL journey, we are really using Sign Supported English (SSE), which means talking normally and adding signs on top in the normal English order. BSL has its own grammar and you do not tend to use your voice throughout the whole conversation, therefore we usually use this when Pricess is not wearing her CIs and cannot hear us. We hope that by using this method at the moment, we will expose Princess to words and sentences, helping her learn to speak and converse, but also learn signs both to assist her conversation and also to use alone when speaking in BSL.
At the beginning, the thought that our baby couldn't hear us, was upsetting, but the fear that we
wouldn't be able to communicate with her was devastating. We didn't know sign language and how on earth could we learn it fast enough to always be a step ahead of her! Thankfully, we met some wonderful teachers who are helping us learn, but have also reassured us of two things - firstly, being deaf doesn't need to stop you doing anything (except using your ears) and secondly, that I only need to know enough sign language to be a little ahead of my princess. Once I started my courses, it didn't seem so daunting after all and now that I ahve caught the signing bug, I'm not sure if I can stop!!
I am almost finished my level 1 course and have already started my level 2. The whole family has
attended a Family Sign Language weekend with NDCS and I also take Princess and one of her
brothers to Sign2Music. We sign as much as possible in the house and it's paying off as Princess has also started signing - hello, goodbye, food, milk, bath, I want, yes, no, duck, pig, implants (Magic Ears), up. Of course, she seems to understand anything we sign or say as well, showing her receptive knowledge is fabulous!
Other people chose to learn sign language for their work or friends, maybe even for a hobby.
There are also people who learn sign language to use as their first language: people who chose against hearing technology, people who can't use hearing technology or those who prefer to use sign. I have met people from each of these groups and I respect all of their decisions because, as I have said before, families are unique and each must chose what works best for them.
I am very proud to have several friends who have been brought up using hearing technology, forced
into an aural world and made to lip read. Of course, that doesn't sound like anything to be proud of, but the reason I am proud of them is that they were uncomfortable and sought to find something that suited them better. Once they discovered sign language, they said that things just "made sense", they were able to understand and be understood so easily and it felt natural to them. Some of them have thrown away their technology, some still use it but would prefer to sign. I am proud that they have been able to make the decision that suits them best and hope that I will be able to support my daughter in the future when she feels the need to make her own communicatin decisions.
Seeing my daughter react to sign language, has made me understand how people feel like that - when she sees your hands move, she can't take her eyes off them - she knows you are communicating. It's been amazing to see her watch her own hands and start to make signs with them and just like a hearing child beginning to talk, she is so proud of herself when she signs and we show our understanding.
At times, the argument whether we should teach deaf children sign or give deaf children technology can get heated, but I really do think that the only fair way to treat your child, is by offering them everything available and waiting until they are old enough, then letting them choose their own direction. As with so many areas of our lives, we need to learn to respect everyone decisions, even if we don't agree with them.
I will never regret the day I decided to learn BSL and I will certainly never regret teaching it to all my children. It is a beautiful language, which unites those who could so easily be isolated in our society and provides a means of communication for those who were previously sent away to boarding schools or institutions and thought of as lesser citizens or, even more insultingly, those of lesser intelligence.
I look forward to continuing my journey of learning BSL and am always excited to see who I will meet next. Thank you to all this inspriational people who have removed my fear of sign language and deafness and all of those who are tirelessly helping me learn - you are all fabulous!!
Thanks for reading & goodnight
Sara xx
Well, I have managed to write four days in a row, which is quite an achievement when I look at my diary, but then I always can make time for things that are important to me. Deaf awareness has become something I am very passionate about since my daughter's diagnosis, mainly because we knew nothing until deafness landed on our doorstep and I assume many of you were the same.
Today's topic is British Sign Language (BSL), or any sign language really. Did you know that there are 130 recognised deaf sign languages throughout the world - Wow!!!! However, in general most sign language users can understand people from different countries much easier than those of us relying on spoken language (so I am reliably told!).
People chose BSL for many different reasons: there are families like mine who have one deaf member. We have chosen to be bilingual (BSL & English) to allow our Princess to chose for herself when she is old enough, whether or not she wants to use her cochlear implants, use her voice or rely on sign. We believe that giving her as many communication options as possible will allow her better access to education, easier socialisation with her hearing & deaf peers and also decrease her frustrations caused by communication difficulties. At this time, when we are all starting our BSL journey, we are really using Sign Supported English (SSE), which means talking normally and adding signs on top in the normal English order. BSL has its own grammar and you do not tend to use your voice throughout the whole conversation, therefore we usually use this when Pricess is not wearing her CIs and cannot hear us. We hope that by using this method at the moment, we will expose Princess to words and sentences, helping her learn to speak and converse, but also learn signs both to assist her conversation and also to use alone when speaking in BSL.
At the beginning, the thought that our baby couldn't hear us, was upsetting, but the fear that we
wouldn't be able to communicate with her was devastating. We didn't know sign language and how on earth could we learn it fast enough to always be a step ahead of her! Thankfully, we met some wonderful teachers who are helping us learn, but have also reassured us of two things - firstly, being deaf doesn't need to stop you doing anything (except using your ears) and secondly, that I only need to know enough sign language to be a little ahead of my princess. Once I started my courses, it didn't seem so daunting after all and now that I ahve caught the signing bug, I'm not sure if I can stop!!
I am almost finished my level 1 course and have already started my level 2. The whole family has
attended a Family Sign Language weekend with NDCS and I also take Princess and one of her
brothers to Sign2Music. We sign as much as possible in the house and it's paying off as Princess has also started signing - hello, goodbye, food, milk, bath, I want, yes, no, duck, pig, implants (Magic Ears), up. Of course, she seems to understand anything we sign or say as well, showing her receptive knowledge is fabulous!
Other people chose to learn sign language for their work or friends, maybe even for a hobby.
There are also people who learn sign language to use as their first language: people who chose against hearing technology, people who can't use hearing technology or those who prefer to use sign. I have met people from each of these groups and I respect all of their decisions because, as I have said before, families are unique and each must chose what works best for them.
I am very proud to have several friends who have been brought up using hearing technology, forced
into an aural world and made to lip read. Of course, that doesn't sound like anything to be proud of, but the reason I am proud of them is that they were uncomfortable and sought to find something that suited them better. Once they discovered sign language, they said that things just "made sense", they were able to understand and be understood so easily and it felt natural to them. Some of them have thrown away their technology, some still use it but would prefer to sign. I am proud that they have been able to make the decision that suits them best and hope that I will be able to support my daughter in the future when she feels the need to make her own communicatin decisions.
Seeing my daughter react to sign language, has made me understand how people feel like that - when she sees your hands move, she can't take her eyes off them - she knows you are communicating. It's been amazing to see her watch her own hands and start to make signs with them and just like a hearing child beginning to talk, she is so proud of herself when she signs and we show our understanding.
At times, the argument whether we should teach deaf children sign or give deaf children technology can get heated, but I really do think that the only fair way to treat your child, is by offering them everything available and waiting until they are old enough, then letting them choose their own direction. As with so many areas of our lives, we need to learn to respect everyone decisions, even if we don't agree with them.
I will never regret the day I decided to learn BSL and I will certainly never regret teaching it to all my children. It is a beautiful language, which unites those who could so easily be isolated in our society and provides a means of communication for those who were previously sent away to boarding schools or institutions and thought of as lesser citizens or, even more insultingly, those of lesser intelligence.
I look forward to continuing my journey of learning BSL and am always excited to see who I will meet next. Thank you to all this inspriational people who have removed my fear of sign language and deafness and all of those who are tirelessly helping me learn - you are all fabulous!!
Thanks for reading & goodnight
Sara xx
Wednesday 6 May 2015
Deaf Awareness Week 4-10 May, day 3
6th May 2015
Ok, so for those of you who have been reading my blog this week, thank you! For those of you who have just joined in, thank you to you too - please feel free to read backwards and see what's been going on.
As day one was diagnosis, day two hearing aids, day three will be about cochlear implants.
Our Princess was identified, at the time of her diagnosis, as being a potential candidate for cochlear implants. For us, this was something we had never heard of - what on earth were they, how did you get them, what did they do - aaaaahhhhhh! So many questions!
Thankfully, once again we reached out to NDCS, Sound Friends and our lovely Teacher of the Deaf and got a wealth of advice, information and support.
I will try to explain cochlear implants (CIs) in a nutshell for you - sorry if it's too simple, I'm going back to the days when I knew nothing about them so that I will start with the basics.
Basically cochlear implants involve placing an electronic implant inside the cochlea, which will convert sound into electrical impulses and send them up the auditory nerve to the brain.
Patients who are suitable for CIs will have a severe-profound hearing loss (depending on locality this could be in one or two ears), but have relatively normal anatomy (as confirmed by MRI & CT scans). Some abnormalities are compatible with CIs and others aren't, I won't go into these now as its a complex world of diagnostics and I couldn't possibly include all the necessary details.
The assessments for CIs usually involve the brain scans (to check the patient has suitable cochlea & auditory nerves), hearing tests (to demonstrate how bad the patients hearing is - it's ironic that you fail if you can hear too well, lol!) and numerous appointments with the implant team to ensure the family is ready to commit to CIs.
Princess was scanned in October 2014, aged 7 months - it was her first general anaesthetic and we were nervous about both that and her results. Thankfully, she coped very well with the anaesthetic and we were allowed Tom go home a few hours later. After two long months, we received news from the surgeon that her scans were perfect and she was suitable for CIs.
He hoped to implant her in January! She would be the youngest in Northern Ireland at that time (and currently still is), receiving her implants at only 10 months old!
Surgery was successful and our little Princess recovered well afterwards. Inside her head was now two electrode arrays, one in each cochlea, with the capability for 12 different frequencies and also a magnet, which would be used to connect to the outside portion of the implant on the time came for
activation.
Activation day for us came 5 weeks later - an emotionally charged day full of expectation and cautious excitement as to what would happen when they "turned on her Magic Ears". We had been given the external equipment home to wear and get used to a fortnight before, so Princess was happy to put on the CIs, which was obviously the first hurdle.
The external equipment is very bulky looking on a baby such as our wee Princess. Firstly, there are two battery packs, which at this stage are on long wires and have clothing clips to be attached on the patient's back - thankfully we had been given a tip, which we are still using, to sew a baby's scratch mitten onto Princess's vests, into which we pop the battery packs. This means that they are much harder to lose and also that they don't hang around her, meaning she would be more likely to pull at or eat them!!
Secondly, there is the external magnet which connects the internal and external systems together. Once this connection is broken, the patient's hearing returns to pre-implant state, ie Princess is once again profoundly deaf. This magnet acts as the transmitter, sending the information inside her ears.
Lastly, but most importantly, there is the sound processor, which hooks over the ear like a hearing aid. This is also where the microphones are located, meaning that the place where sound is received (the processor) for an implant user, is the same as for a hearing person.
My little Pricess has now been "switched on" for 10 weeks and it's been a miracle for her. She can
hear loud noises (doors banging, dogs barking, brothers shouting), but also quieter noises such as our voices and her musical toys. She is vocalising almost constantly when her CIs are on and is also starting to copy noises.
Of course, every child and adult is different and there are many factors that contribute to the success of CIs, but for some, to be given the chance to hear any sound or even to hear themselves make sound, is worth it.
There is a lot of controversy about cochlear implants or other hearing technology between the deaf and hearing communities - my personal opinion is that everyone's family is unique and each must
choose the best path for their own needs.
We have chosen to get our Princess implanted to allow her early access to sound (and hopefully speech and language development), that will enable her to be successful in mainstream school. However, we are very aware we have made a huge decision on her behalf and to ensure that we don't push her into a world in which she feels uncomfortable, we have also opted for our family to endeavour to become bilingual (English and BSL). We retain very close links with Sound Friends, where she can meet other children with hearing loss - some with technology and some without; and hope in the future to join the local Deaf community in an effort to build links on Princess's behalf and also help us learn to sign better.
Once again everyone, thanks for reading, please do get in touch with any questions, I promise I won't bite!
Goodnight,
Sara xx
UPDATE: I though I would share a question I received in relation this CIs on Facebook - the person wanted to know why you would turn your implants off at all once they had been activated, my apologies, I had intended to include that info, so that's for asking!
My answer:
Thanks!
As the outside equipment is bulky and non-waterproof (although some waterproof kits are available), it is removed for sleeping and anything involving water (eg Bathtime, swimming etc). Humidity can also cause a problem and they can become uncomfortable if a person is feeling unwell or suffering an infection around the implant site. Of course, they are a piece of technology so they may need to be removed for repairs also (we do get spares, but some people manage to have a lot of breakages!)
Thanks for asking! CIs were new to us until it became an option for our Princess, then we had a lot to learn!
Ok, so for those of you who have been reading my blog this week, thank you! For those of you who have just joined in, thank you to you too - please feel free to read backwards and see what's been going on.
As day one was diagnosis, day two hearing aids, day three will be about cochlear implants.
Our Princess was identified, at the time of her diagnosis, as being a potential candidate for cochlear implants. For us, this was something we had never heard of - what on earth were they, how did you get them, what did they do - aaaaahhhhhh! So many questions!
Thankfully, once again we reached out to NDCS, Sound Friends and our lovely Teacher of the Deaf and got a wealth of advice, information and support.
I will try to explain cochlear implants (CIs) in a nutshell for you - sorry if it's too simple, I'm going back to the days when I knew nothing about them so that I will start with the basics.
Basically cochlear implants involve placing an electronic implant inside the cochlea, which will convert sound into electrical impulses and send them up the auditory nerve to the brain.
Patients who are suitable for CIs will have a severe-profound hearing loss (depending on locality this could be in one or two ears), but have relatively normal anatomy (as confirmed by MRI & CT scans). Some abnormalities are compatible with CIs and others aren't, I won't go into these now as its a complex world of diagnostics and I couldn't possibly include all the necessary details.
The assessments for CIs usually involve the brain scans (to check the patient has suitable cochlea & auditory nerves), hearing tests (to demonstrate how bad the patients hearing is - it's ironic that you fail if you can hear too well, lol!) and numerous appointments with the implant team to ensure the family is ready to commit to CIs.
Princess was scanned in October 2014, aged 7 months - it was her first general anaesthetic and we were nervous about both that and her results. Thankfully, she coped very well with the anaesthetic and we were allowed Tom go home a few hours later. After two long months, we received news from the surgeon that her scans were perfect and she was suitable for CIs.
He hoped to implant her in January! She would be the youngest in Northern Ireland at that time (and currently still is), receiving her implants at only 10 months old!
Surgery was successful and our little Princess recovered well afterwards. Inside her head was now two electrode arrays, one in each cochlea, with the capability for 12 different frequencies and also a magnet, which would be used to connect to the outside portion of the implant on the time came for
activation.
Activation day for us came 5 weeks later - an emotionally charged day full of expectation and cautious excitement as to what would happen when they "turned on her Magic Ears". We had been given the external equipment home to wear and get used to a fortnight before, so Princess was happy to put on the CIs, which was obviously the first hurdle.
The external equipment is very bulky looking on a baby such as our wee Princess. Firstly, there are two battery packs, which at this stage are on long wires and have clothing clips to be attached on the patient's back - thankfully we had been given a tip, which we are still using, to sew a baby's scratch mitten onto Princess's vests, into which we pop the battery packs. This means that they are much harder to lose and also that they don't hang around her, meaning she would be more likely to pull at or eat them!!
Secondly, there is the external magnet which connects the internal and external systems together. Once this connection is broken, the patient's hearing returns to pre-implant state, ie Princess is once again profoundly deaf. This magnet acts as the transmitter, sending the information inside her ears.
Lastly, but most importantly, there is the sound processor, which hooks over the ear like a hearing aid. This is also where the microphones are located, meaning that the place where sound is received (the processor) for an implant user, is the same as for a hearing person.
My little Pricess has now been "switched on" for 10 weeks and it's been a miracle for her. She can
hear loud noises (doors banging, dogs barking, brothers shouting), but also quieter noises such as our voices and her musical toys. She is vocalising almost constantly when her CIs are on and is also starting to copy noises.
Of course, every child and adult is different and there are many factors that contribute to the success of CIs, but for some, to be given the chance to hear any sound or even to hear themselves make sound, is worth it.
There is a lot of controversy about cochlear implants or other hearing technology between the deaf and hearing communities - my personal opinion is that everyone's family is unique and each must
choose the best path for their own needs.
We have chosen to get our Princess implanted to allow her early access to sound (and hopefully speech and language development), that will enable her to be successful in mainstream school. However, we are very aware we have made a huge decision on her behalf and to ensure that we don't push her into a world in which she feels uncomfortable, we have also opted for our family to endeavour to become bilingual (English and BSL). We retain very close links with Sound Friends, where she can meet other children with hearing loss - some with technology and some without; and hope in the future to join the local Deaf community in an effort to build links on Princess's behalf and also help us learn to sign better.
Once again everyone, thanks for reading, please do get in touch with any questions, I promise I won't bite!
Goodnight,
Sara xx
UPDATE: I though I would share a question I received in relation this CIs on Facebook - the person wanted to know why you would turn your implants off at all once they had been activated, my apologies, I had intended to include that info, so that's for asking!
My answer:
Thanks!
As the outside equipment is bulky and non-waterproof (although some waterproof kits are available), it is removed for sleeping and anything involving water (eg Bathtime, swimming etc). Humidity can also cause a problem and they can become uncomfortable if a person is feeling unwell or suffering an infection around the implant site. Of course, they are a piece of technology so they may need to be removed for repairs also (we do get spares, but some people manage to have a lot of breakages!)
Thanks for asking! CIs were new to us until it became an option for our Princess, then we had a lot to learn!
Tuesday 5 May 2015
Deaf Awareness Week 4-10 May, day 2
5th May 2015
Yesterday's topic was diagnosis, following that, many children/adults then get fitted for hearing aids in the hope of getting some benefit to their hearing.
Our Princess was fitted for her first hearing aids at about 8 weeks and she began wearing them a few weeks later.
It was a time of mixed emotions and confusion for us as parents. We had never used hearing aids before, so we needed to learn how to look after them, change batteries, observe for moulds getting to small etc. Princess wasn't used to having anything near her ears and she was now about 12weeks old - we seemed to replace the aids into her ears several times every minute. It was a really frustrating time for us, constantly signing "no, don't touch your ears!" and replacing the hearing aids (HAs), all the while watching for reactions, but we didn't see any.
For those of you who don't know much about hearing aids, here is a little summary for you.
1. The ear mould sits inside the ear, this should be a snug fit (childrens moulds may need replaced every few weeks!), if the mould doesn't fit well, there may be a lot of squealing from the HAs (this can also happen if the volume is set too high)
2. The processor is worn behind the ear, it contains the microphones to pick up sound from the environment. The processor also contains the batteries to power the HA
3. A tube links the mould with the processor and essentially sends the amplified sounds into the ear canal
4. As HAs send sound into the ear canal, they are only suitable for some patients. Children with Glue Ear, for example, which is a conductive hearing loss, may not particularly benefit from HAs the sound is unable to conduct throughout the inner ear.
5. Patients will get mixed benefits from HAs, the aim is to achieve hearing within the "speech bubble" to enable to user to hear and participate in spoken conversations. If the outcomes are not useful, patients may decide to see if they are eligible for cochlear implants, bone anchored hearing aids or simply do without technology. No direction is wrong, provided the patient is given support for their decision, by health & educational services as well as family and friends.
Whilst, we are very thankful for technology, hearing aids did not help Princess hear, there was no evidence that they helped at all. For us, the experience was stressful - she constantly took her HAs off, often tried to eat them (big choking risk from batteries) in addition to the fact that we couldn't see any benefit for her.
We had already started learning to sign and had been signing with Princess for a few months, so thankfully the lack of benefit from the HAs wasn't a huge or unexpected problem for us. However, I will always wonder if it was necessary to put her and us through those few months, if there was a way of predicting usefulness of HAs from audiological test results - but that is a question that will never be answered.
Some HA users, will gain benefit from their technology, but they will still need or desire to use sign language. This could be to aid understanding, to allow the user to relax in the conversation (listening artificially is very tiring) or because it is the language they prefer. Others may be able to hear really well with HAs or chose to complement their hearing by lip reading. The important thing to remember is that once technology is removed, the patient will definitely have a problem hearing, but this will be different for every individual. Please remember to use the communication tips from yesterday's blog for all deaf people, even those wearing HAs, as often they need some extra communication cues in order to follow the conversation.
Thanks for reading,
Goodnight,
Sara xx
Yesterday's topic was diagnosis, following that, many children/adults then get fitted for hearing aids in the hope of getting some benefit to their hearing.
Our Princess was fitted for her first hearing aids at about 8 weeks and she began wearing them a few weeks later.
It was a time of mixed emotions and confusion for us as parents. We had never used hearing aids before, so we needed to learn how to look after them, change batteries, observe for moulds getting to small etc. Princess wasn't used to having anything near her ears and she was now about 12weeks old - we seemed to replace the aids into her ears several times every minute. It was a really frustrating time for us, constantly signing "no, don't touch your ears!" and replacing the hearing aids (HAs), all the while watching for reactions, but we didn't see any.
For those of you who don't know much about hearing aids, here is a little summary for you.
1. The ear mould sits inside the ear, this should be a snug fit (childrens moulds may need replaced every few weeks!), if the mould doesn't fit well, there may be a lot of squealing from the HAs (this can also happen if the volume is set too high)
2. The processor is worn behind the ear, it contains the microphones to pick up sound from the environment. The processor also contains the batteries to power the HA
3. A tube links the mould with the processor and essentially sends the amplified sounds into the ear canal
4. As HAs send sound into the ear canal, they are only suitable for some patients. Children with Glue Ear, for example, which is a conductive hearing loss, may not particularly benefit from HAs the sound is unable to conduct throughout the inner ear.
5. Patients will get mixed benefits from HAs, the aim is to achieve hearing within the "speech bubble" to enable to user to hear and participate in spoken conversations. If the outcomes are not useful, patients may decide to see if they are eligible for cochlear implants, bone anchored hearing aids or simply do without technology. No direction is wrong, provided the patient is given support for their decision, by health & educational services as well as family and friends.
Whilst, we are very thankful for technology, hearing aids did not help Princess hear, there was no evidence that they helped at all. For us, the experience was stressful - she constantly took her HAs off, often tried to eat them (big choking risk from batteries) in addition to the fact that we couldn't see any benefit for her.
We had already started learning to sign and had been signing with Princess for a few months, so thankfully the lack of benefit from the HAs wasn't a huge or unexpected problem for us. However, I will always wonder if it was necessary to put her and us through those few months, if there was a way of predicting usefulness of HAs from audiological test results - but that is a question that will never be answered.
Some HA users, will gain benefit from their technology, but they will still need or desire to use sign language. This could be to aid understanding, to allow the user to relax in the conversation (listening artificially is very tiring) or because it is the language they prefer. Others may be able to hear really well with HAs or chose to complement their hearing by lip reading. The important thing to remember is that once technology is removed, the patient will definitely have a problem hearing, but this will be different for every individual. Please remember to use the communication tips from yesterday's blog for all deaf people, even those wearing HAs, as often they need some extra communication cues in order to follow the conversation.
Thanks for reading,
Goodnight,
Sara xx
Monday 4 May 2015
Deaf Awareness Week 4-10th May 2015
4th May 2015
I am laughing and thinking already that I have set myself an impossible task, but yet it's an important one, so I will try my very best! I have decided to update my blog every day this week, as it's Deaf Awareness Week - let's make some more people aware!
The obvious place to start is with a diagnosis of Deafness - for our little Princess, this happened when she was 6 weeks old. A time when as new parents you are exhausted, but overjoyed to be starting a relationship with your new baby. A time when you are full of hopes and dreams for her future. A time when everything seems possible and everyone is admiring your beautiful baby.
Diagnosis of profound Deafness changes things for a while.
At first, we were just in shock - the tests must be wrong, she will be fine, we will retest, surely she will grow out of this problem, did the examiner do the tests correctly?
We tested her ourselves - banging saucepans, slamming doors, shouting, making loud noises while she was sleeping (I guess this was also a denial phase).
Of course, none of this worked, the examiner was right, our perfect little princess couldn't hear anything, she was living in a world of silence.
Thankfully, our baby was blissfully unaware of any of this and she was as happy as she could be and today is still one of the happiest, most contented babies I have ever met.
Amidst our confusion, we of course searched Google and couldn't find the info we needed, however thankfully we found NDCS (national society for deaf children), which provided us with information of a local support group and also a freephone helpline.
The helpine staff were excellent, so supportive, comforting, understanding and informative. They arranged for us to be called back by an audiologist to give us more specific information, which was superb and really helped. They also empowered us to phone back to the audiologist at our local hospital who had examined our Princess and ask for more information and explanations of the tests.
Our local support group were invaluable, and still are! Sound Friends have been a shoulder to cry on and so much more: fellow parents who know how we feel and can give us support, the benefit of their experiences and tips of the next stages we will go through. It's brilliant to know other parents in the sam position as us and also for our kids to meet deaf children and other siblings of deaf children to gain understanding and support for themselves.
We have attended NDCS events, training courses and support meetings, we have taken the whole family along to Sound Friens events and I am just about to complete my Level 1 BSL and have recently started my Level 2 BSL. Throughout all of this (12.5 months) we have made some wonderful friends and learnt so much - we have so many people to thank for helping us get to the stage we are at now, it would be impossible to name them (this is the nearest I will ever get to an Oscars speech!), but it's safe to say that each of them also have an extremely long list of supporters too.
We are no longer fearful for Charlotte's future, we have gained so much from our Deaf networks through Sound Friends, NDCS, BSL classes and Facebook, that we are very happy to allow our daughter to develop at her own pace and see where life takes her, just like our three hearing sons. Her hearing loss doesn't define her, although it will always be a part of her (and a part that I am very proud of!). There is no reason, that with the right help and support, that Princess cannot turn into the woman she dreams of, just like any other "normal" child (what is normal anyway? Haven't met a normal person yet!?!).
In closing tonight, I thought I would share some tips for good communication with a deaf person:
1. Maintain eye contact with the person
2. Don't talk slower or louder than usual as this distorts your mouth, making it harder to lip read
3. Don't have a bright light or window behind you as this puts your mouth in shadow (bad again for lip reading)
4. Use facial expressions and hand gestures or signs to help understanding and emphasis of your conversation
5. Don't eat, drink, smoke, cover your mouth or chew gum while conversing with a deaf person as they will not be able to read your lips
6. Only allow one person to talk at a time
7. Don't give up and say it doesn't matter, try again, or use another communication method
8. Reduce background noise
I am laughing and thinking already that I have set myself an impossible task, but yet it's an important one, so I will try my very best! I have decided to update my blog every day this week, as it's Deaf Awareness Week - let's make some more people aware!
The obvious place to start is with a diagnosis of Deafness - for our little Princess, this happened when she was 6 weeks old. A time when as new parents you are exhausted, but overjoyed to be starting a relationship with your new baby. A time when you are full of hopes and dreams for her future. A time when everything seems possible and everyone is admiring your beautiful baby.
Diagnosis of profound Deafness changes things for a while.
At first, we were just in shock - the tests must be wrong, she will be fine, we will retest, surely she will grow out of this problem, did the examiner do the tests correctly?
We tested her ourselves - banging saucepans, slamming doors, shouting, making loud noises while she was sleeping (I guess this was also a denial phase).
Of course, none of this worked, the examiner was right, our perfect little princess couldn't hear anything, she was living in a world of silence.
Thankfully, our baby was blissfully unaware of any of this and she was as happy as she could be and today is still one of the happiest, most contented babies I have ever met.
Amidst our confusion, we of course searched Google and couldn't find the info we needed, however thankfully we found NDCS (national society for deaf children), which provided us with information of a local support group and also a freephone helpline.
The helpine staff were excellent, so supportive, comforting, understanding and informative. They arranged for us to be called back by an audiologist to give us more specific information, which was superb and really helped. They also empowered us to phone back to the audiologist at our local hospital who had examined our Princess and ask for more information and explanations of the tests.
Our local support group were invaluable, and still are! Sound Friends have been a shoulder to cry on and so much more: fellow parents who know how we feel and can give us support, the benefit of their experiences and tips of the next stages we will go through. It's brilliant to know other parents in the sam position as us and also for our kids to meet deaf children and other siblings of deaf children to gain understanding and support for themselves.
We have attended NDCS events, training courses and support meetings, we have taken the whole family along to Sound Friens events and I am just about to complete my Level 1 BSL and have recently started my Level 2 BSL. Throughout all of this (12.5 months) we have made some wonderful friends and learnt so much - we have so many people to thank for helping us get to the stage we are at now, it would be impossible to name them (this is the nearest I will ever get to an Oscars speech!), but it's safe to say that each of them also have an extremely long list of supporters too.
We are no longer fearful for Charlotte's future, we have gained so much from our Deaf networks through Sound Friends, NDCS, BSL classes and Facebook, that we are very happy to allow our daughter to develop at her own pace and see where life takes her, just like our three hearing sons. Her hearing loss doesn't define her, although it will always be a part of her (and a part that I am very proud of!). There is no reason, that with the right help and support, that Princess cannot turn into the woman she dreams of, just like any other "normal" child (what is normal anyway? Haven't met a normal person yet!?!).
In closing tonight, I thought I would share some tips for good communication with a deaf person:
1. Maintain eye contact with the person
2. Don't talk slower or louder than usual as this distorts your mouth, making it harder to lip read
3. Don't have a bright light or window behind you as this puts your mouth in shadow (bad again for lip reading)
4. Use facial expressions and hand gestures or signs to help understanding and emphasis of your conversation
5. Don't eat, drink, smoke, cover your mouth or chew gum while conversing with a deaf person as they will not be able to read your lips
6. Only allow one person to talk at a time
7. Don't give up and say it doesn't matter, try again, or use another communication method
8. Reduce background noise
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