Tuesday 28th July 2015
After months of waiting, Princess finally got a music therapy place and started last week - we love it! Music has always been an important part of my life, I love listening to it, I love playing it, I love singing (though I'm not that good at it).
After diagnosis, a huge part of my sadness, was the thought that my little Princess might never be able to appreciate music, participate in it or associate it with magical moments in her life.
The miracle of cochlear implants, seems to be producing wonderful results for her - most recent audiological testing shows that she may be hearing around 30-40dB, meaning that she can now hear most sounds and speech! We really noticed this recently up one returning from holidays: Princess, her brothers, father and myself were in the living room, TV on, brothers being noisy, hubby & I chatting and Princess playing with toys. All doors were open and the radio was playing outside in the car in the driveway, when suddenly Princess noticed the music and started signing & dancing to tell us - she was really happy to hear it and we both had a little tear in our eyes. It was amazing to see her pick a distant noise over all that was going in around her and correctly identify it - definitely a milestone for me.
Today, again, another "little emotional moment" for me.
During her music therapy session, we were using the "water drum" which sounds like waves crashing on the beach. Princess was loving the noise & really enjoying watching the beads inside the drum moving above her head, then the therapist started making really loud wave sounds and abruptly stopping them to create silence. Princess noticed! This was the first time she has shown a reaction to a noise/sound stopping - huge progress. Many times we have seen reactions to sounds starting, but never to stops or silences. Of course, in addition to this, I had another little tear when I watched her playing the drum and dancing to her therapist singing - just so cute & beautiful!
Princess continues to be very verbal and making loads of noise & babble, no words yet, but definite changes in volume, pitch, tone, speed and emotion, which hopefully means she is able to hear those things, leading to her replicating them in her own communications. It's lovely to hear her finding her voice and very consciously using it to communicate.
On the BSL front, I have finally had notification that I have passed my Level 1 course and am a good few months into my Level 2 course and am very pleased to report that Princess is signing new signs every day - today we had lots of signing about rain since our summer weather has been so awful!
Whilst, I am not going to pretend all this is easy, it's not, it's hard work - I'm constantly thinking about the acoustic environment we are in wondering what Princess can hear, checking her implants, trying to sign as much as I can, trying to introduce new sounds & words - we are constantly grateful for this amazing technology and the opportunities it has given our daughter and our family.
We continue to learn sign language and allow Princess to have time both with and without implants so that she is comfortable in both the Deaf and Hearing worlds and so far, everything seems to be going very well.
Well, that's you basically updated, hopefully the next one won't be so long in coming. Hope you enjoyed reading, please feel free to share to anyone who could benefit.
Goodnight xx
Tuesday 28 July 2015
Monday 1 June 2015
I'm still here!
1st June 2015
Sorry folks, I am so disappointed in myself for not posting in so long, but I'm afraid, as so often happens, life got in the way!
Anyway, things have been great with our Princess, she is just such an amazing little lady.
Sorry folks, I am so disappointed in myself for not posting in so long, but I'm afraid, as so often happens, life got in the way!
Anyway, things have been great with our Princess, she is just such an amazing little lady.
- She has managed to hear 60dB during testing in the implant centre and 50dB here at home with her TOD
- She is starting to copy some sounds, in fact she if she is playing and you make certain noises, she doesn't bother looking up at you she just repeats the noise, which her TOD found pretty entertaining this morning, especially considering she is only just 15 months old!
- A signing explosion has also happened, meaning meal times have become much longer since she insists on asking for more food between most spoonfuls and also asking for drinks, which she is now actually starting to drink! Oh yeah, and she likes to applaud herself for wanting so well - alternating the hearing clap with the deaf clap just like I have always done to her! My favourite though is at bedtime, when she signs back love to me while we are saying goodnight, it is the best thing ever. At that time she cannot hear me, but it's so amazing to know that even though we are all only learning sign, that she knows "Love" - WOW!
- She is starting to remind me of my boys too, in that she is leaning out of her buggy, trolley, my arms in order to get peoples attention (often leaving round corners or flapping her hand - sign for attention) and say "Haaaa" while waving (Hi!), which just melts my heart
- Today she decided to pull herself up to stand for the first time. She is a bum shuffler and doesn't really like to stand, although might do it if she feels like it for a few seconds, before she either sits down or lifts her legs into the air. I'm very happy to delay the standing and walking, since i know she is my last baby, I want to hang on to that for as long as I can, but I do realise it's going to happen and I need to prepare myself.
- I can even see her play starting to develop as she moves cars and animals around the floor or planes up into the air.
So as you can see, progress has been fast and furious. I will never know whether a lot of things have progressed quicker because of having implants, but I do know, that I love knowing that my Princess can hear my voice and I love hearing hers talk back to me.
I hope you enjoyed the update and I will try to be a little more frequent in the future.
Goodnight,
Saz xx
Monday 11 May 2015
Deaf Awareness Week 4-10 May 2015, day 7, final day
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
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
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
Friday 24 April 2015
Proud Parents!
24th April 2015
Wow! So much to tell, I don't know where to start!
Little Princess has now been switched on for just over 8 weeks and it's been quite a ride - so exciting, so wonderful, so emotional.
It has been amazing watching our little lady start to hear for the first time, it's somethng most of us take for granted and I guess, she took her silence for granted, as that was all she had ever experienced. Now, however, thanks to the miracle of modern technology, my little princess has been introduced to a whole new world and she seems to be taking it all in her stride. The best thing for us however, is that she seems very comfortable with or without her Magic Ears, which is exactly what we want for her.
She has learnt her own name and will consistently turn to someone calling her name, provided her brothers aren't causing too much background noise! She shows so much pleasure from banging her toys together and heating the noises they make - I think all kids love this, but you can tell from her expression that this is a new noise to her and she loves it!
Princess has even started copying some sounds!! She will lift a toy aeroplane and say "Aaaaahhhhh" while flying it around and also stroke a fluffy animal and copy "Ahhhh Ahhh". Other sounds are also heard - mmmm, mumm mummmm (don't get excited, it's not mummy, it's much too early for anything like that!) and loads of screaming, shouting and general communication. For a child with communication difficulties, Princess certainly does not have any problems letting people know what she wants!
On that note, Princess can now understand most conversations in BSL, following instructions and settling with information, but she has now also started signing back - more, food, I want, give me, bird, fish, hello, goodbye, no, yes, princess (I think), magic ears on or off. I am amazed by her progress every day.
With the help and education from her Teacher of the Deaf (TOD) and her speech and language therapist (SLT), we have been taught games and fun ways to help her understand sound, the importance of sound, the consequence of sound and how to make sound. It is difficult to understand why deaf kids (or adults) who get CIs, need to learn to hear, but it's all to do with the digital nature of the sounds sent to and received by the brain. Hearing babies, start learning about listening and sound in the womb, this continues at birth and increased exposure leads to increased understanding and acceptance. It is still strange for me to think that without her Magic Ears, my princess cannot hear me, even though I automatically rely on sign when she is Deaf again. I still can't imagine what it is like to be in her silent world. Maybe when she is older, she can teach me about it herself, while for now I will just have to watch her cues and get clues from Deaf adults I have met.
Quite aside from her Ears - princess has been racing ahead in her development, much to my disgust as I want to savour the "baby" phase for as long as I can since she is my last baby! She has become a "bum shuffler", racing across the floor and chasing everyone around the house (whilst shouting about it!), she has started feeding herself, she is going to swimming lessons (funding my our local deaf group, Sound Friends) which cater for her deafness and she has started making friends with other babies.
It devastates me that my baby is growing up so fast, but I am immensely proud of all she has already accomplished and I am so excited for her future and whatever that might hold!
Thanks again for reading, please feel free to leave comments or contact me about any of this.
Goodnight,
Sara xx
Wow! So much to tell, I don't know where to start!
Little Princess has now been switched on for just over 8 weeks and it's been quite a ride - so exciting, so wonderful, so emotional.
It has been amazing watching our little lady start to hear for the first time, it's somethng most of us take for granted and I guess, she took her silence for granted, as that was all she had ever experienced. Now, however, thanks to the miracle of modern technology, my little princess has been introduced to a whole new world and she seems to be taking it all in her stride. The best thing for us however, is that she seems very comfortable with or without her Magic Ears, which is exactly what we want for her.
She has learnt her own name and will consistently turn to someone calling her name, provided her brothers aren't causing too much background noise! She shows so much pleasure from banging her toys together and heating the noises they make - I think all kids love this, but you can tell from her expression that this is a new noise to her and she loves it!
Princess has even started copying some sounds!! She will lift a toy aeroplane and say "Aaaaahhhhh" while flying it around and also stroke a fluffy animal and copy "Ahhhh Ahhh". Other sounds are also heard - mmmm, mumm mummmm (don't get excited, it's not mummy, it's much too early for anything like that!) and loads of screaming, shouting and general communication. For a child with communication difficulties, Princess certainly does not have any problems letting people know what she wants!
On that note, Princess can now understand most conversations in BSL, following instructions and settling with information, but she has now also started signing back - more, food, I want, give me, bird, fish, hello, goodbye, no, yes, princess (I think), magic ears on or off. I am amazed by her progress every day.
With the help and education from her Teacher of the Deaf (TOD) and her speech and language therapist (SLT), we have been taught games and fun ways to help her understand sound, the importance of sound, the consequence of sound and how to make sound. It is difficult to understand why deaf kids (or adults) who get CIs, need to learn to hear, but it's all to do with the digital nature of the sounds sent to and received by the brain. Hearing babies, start learning about listening and sound in the womb, this continues at birth and increased exposure leads to increased understanding and acceptance. It is still strange for me to think that without her Magic Ears, my princess cannot hear me, even though I automatically rely on sign when she is Deaf again. I still can't imagine what it is like to be in her silent world. Maybe when she is older, she can teach me about it herself, while for now I will just have to watch her cues and get clues from Deaf adults I have met.
Quite aside from her Ears - princess has been racing ahead in her development, much to my disgust as I want to savour the "baby" phase for as long as I can since she is my last baby! She has become a "bum shuffler", racing across the floor and chasing everyone around the house (whilst shouting about it!), she has started feeding herself, she is going to swimming lessons (funding my our local deaf group, Sound Friends) which cater for her deafness and she has started making friends with other babies.
It devastates me that my baby is growing up so fast, but I am immensely proud of all she has already accomplished and I am so excited for her future and whatever that might hold!
Thanks again for reading, please feel free to leave comments or contact me about any of this.
Goodnight,
Sara xx
Sunday 29 March 2015
Super Sunday
29th March 2015
As usual, I am starting by apologising for the delay since my last blog, but I'm going to stop apologising. I am not sorry I have a busy life, I am lucky to have it and the energy to cope with it. I am lucky to have four wonderful children and my excellent husband and occasionally some work (I am currently on a career break from my normal job). I am lucky to be happy and contented with my life, I know so many peolle who aren't.
The last week has been wonderful for our family. The boys have all enjoyed school trips and treats before they finished up for Easter, whilst the Princess had a visit from her teacher of the deaf, resulting in her first ever homework!
It would also appear that she heard her name for the first time on 27th March!! We definitely saw a reaction when Daddy called her name during playtime - wonderfully amazing! Of course, every time we try to get a video she ignores us! We are obviously excited about this new milestone, although the weight of our habilitation for Charlotte is hitting home now, bringing with it nerves and pressure that we will do everything that needs done and that we will do it correctly and frequently enough.
Our BSL journey continues as a family, following on from my last blog, we finished our family sign weekend, very happy at what we had learnt and very proud of our eldest son who came into the classroom for the Sunday session - he passed the fingerspelling exam with 100% even though it had been 4/5 months since we taught him the alphabet!
Next was my BSL level 1, part 102 exam on Wednesday night. I conversed about my family and I hope I did well, I of course have thought if a few mistakes, but hopefully I did well enough to pass.
Finally, this morning, I attended an information session about starting my level 2 course, with a group of parents at Jordanstown School for the Deaf and Blind. This course is so important because it has been funded by DCAL, following campaigns by other parents, and includes a crèche, meaning I can study with the peace of mind that wonderful childcare provides. When collecting my kids from the crèche, I was told that the Princess was sleeping and then they asked me if I signed with her. When I confirmed that I did, one of the staff told me that she was signing a story book to my Princess, when she signed back to her - wow, I am so happy and proud of my little daughter, although she has a few signs that she uses at home, I have never seen or heard about her signing when hubby or I am not there. The sense of relief that she is able to manage her own communication needs is such a weight off my shoulders, the diagnosis of deafness is one thing, but the fear that the child will be isolated by a communication issue is a whole extra fear. We will continue to encourage sign, speech and listening skills in the hope that the more communication tools she can use, her frustrations will be lessened and she will have much more freedom in her life.
Today finished up with a Sound Friends Easter Party, at which the kids had a ball. It is so important that my hearing children feel comfortable with kids who use hearing technology and see that they can all have fun doing the same activities. Meanwhile, I was able to have conversation with other parents, chatting about my Princess and her needs, gaining tips and getting advice. I have found things very emotional and difficult recently and so it was comforting to be able to chat openly with friends who understand and won't judge what I say, but offer a listening ear and often can very accurately empathise with my situation.
Our family was so grateful on Friday to Little Oaks Preschool who held a "Wear it Loud" day to raise money for Sound Friends in our honour., they raised a wonderful £170! I couldn't do without the support of Sound Friends and so I will remind you I am raising money for them by abseiling down the Europa hotel in Belfast, you can sponsor me via JustGiving by clicking the link on my blog page.
Goodnight everyone & thanks for reading,
Sara xx
As usual, I am starting by apologising for the delay since my last blog, but I'm going to stop apologising. I am not sorry I have a busy life, I am lucky to have it and the energy to cope with it. I am lucky to have four wonderful children and my excellent husband and occasionally some work (I am currently on a career break from my normal job). I am lucky to be happy and contented with my life, I know so many peolle who aren't.
The last week has been wonderful for our family. The boys have all enjoyed school trips and treats before they finished up for Easter, whilst the Princess had a visit from her teacher of the deaf, resulting in her first ever homework!
It would also appear that she heard her name for the first time on 27th March!! We definitely saw a reaction when Daddy called her name during playtime - wonderfully amazing! Of course, every time we try to get a video she ignores us! We are obviously excited about this new milestone, although the weight of our habilitation for Charlotte is hitting home now, bringing with it nerves and pressure that we will do everything that needs done and that we will do it correctly and frequently enough.
Our BSL journey continues as a family, following on from my last blog, we finished our family sign weekend, very happy at what we had learnt and very proud of our eldest son who came into the classroom for the Sunday session - he passed the fingerspelling exam with 100% even though it had been 4/5 months since we taught him the alphabet!
Next was my BSL level 1, part 102 exam on Wednesday night. I conversed about my family and I hope I did well, I of course have thought if a few mistakes, but hopefully I did well enough to pass.
Finally, this morning, I attended an information session about starting my level 2 course, with a group of parents at Jordanstown School for the Deaf and Blind. This course is so important because it has been funded by DCAL, following campaigns by other parents, and includes a crèche, meaning I can study with the peace of mind that wonderful childcare provides. When collecting my kids from the crèche, I was told that the Princess was sleeping and then they asked me if I signed with her. When I confirmed that I did, one of the staff told me that she was signing a story book to my Princess, when she signed back to her - wow, I am so happy and proud of my little daughter, although she has a few signs that she uses at home, I have never seen or heard about her signing when hubby or I am not there. The sense of relief that she is able to manage her own communication needs is such a weight off my shoulders, the diagnosis of deafness is one thing, but the fear that the child will be isolated by a communication issue is a whole extra fear. We will continue to encourage sign, speech and listening skills in the hope that the more communication tools she can use, her frustrations will be lessened and she will have much more freedom in her life.
Today finished up with a Sound Friends Easter Party, at which the kids had a ball. It is so important that my hearing children feel comfortable with kids who use hearing technology and see that they can all have fun doing the same activities. Meanwhile, I was able to have conversation with other parents, chatting about my Princess and her needs, gaining tips and getting advice. I have found things very emotional and difficult recently and so it was comforting to be able to chat openly with friends who understand and won't judge what I say, but offer a listening ear and often can very accurately empathise with my situation.
Our family was so grateful on Friday to Little Oaks Preschool who held a "Wear it Loud" day to raise money for Sound Friends in our honour., they raised a wonderful £170! I couldn't do without the support of Sound Friends and so I will remind you I am raising money for them by abseiling down the Europa hotel in Belfast, you can sponsor me via JustGiving by clicking the link on my blog page.
Goodnight everyone & thanks for reading,
Sara xx
Saturday 21 March 2015
Peace and quiet (and chocolate and a cuppa)
Saturday 21st March 2015
I am sitting in a still and quiet hotel bedroom, with five sleepers all around me, they are completely exhausted. I guess I am too, but the lure of a cuppa and some chocolate on my own (and some time to read FB and update my blog was too irresistible!)
This weekend, we are on an NDCS Family Sign Language weekend. We are learning so much! Today topics ranged from greeting people, learning the alphabet, spelling out our names, learning numbers and reciting mobile numbers. We also importantly learnt the signs for deaf and hearing.
It is so lovely and therapeutic to come together with a diverse group of people, of whom many were strangers to me, sharing our only common bond of having a deaf child in the family. We have bonded and laughed, leant and giggled - we have had fun - whilst our children were being expertly looked after. It is such a weight off a parent's mind, to know that their child (or children) is being looked after, safe in the knowledge that we will be called should anything be needed. This reassurance allowed us to learn sign language today for several hours with two expert teachers. We learnt so much, because of the teaching, but also because it was so much fun! It's just so much easier to learn when you're laughing.
My next BSL exam is coming up and so this weekend was great timing for me to get in some extra practice!
However, my joy today especially came from the children, as usual you might think, and their reactions to disability. Now, my kids are encouraged to always ask questions - if they are not sure if their questions are appropriate, they should ask us (hubby or I) first, but if it's a friendly question, we encourage them to ask the person or family themselves. So today they commented on a little girl who was the same age as one of our sons, who happened to be using a wheelchair. Initially they stated, we saw a girl in a wheelchair and she is only 3!!! Why is that? Of course, we couldn't see the little girl now and I had no idea why she needed a wheelchair. However, later on I spotted her and so I stopped her mummy & said that my boys thought it was brilliant that her daughter had a wheelchair and she was only 3!
What followed was a beautiful show of acceptance that only kids can do (I try everyday to be more like a child in my acceptance of people, but their innocence makes it so much easier). The mummy was pleased I had stopped her and called her daughter over, I called over my two older sons (aged 7 & 5), we all then had a chat with our new friend and told her we thought her "magic wheels" were cool, there are like my duaghter's "Magic Ears", they help you do something you couldn't do if you didn't have the magic. The little girl (who is actually 4), showed us her wheels - it was actually a walking frame and not a chair, she was very proud and slightly bashful at our boys' excitement toward her wheels - a reaction I don't think she must be used to. The boys told her they thought it was great she had magic wheels to allow her to walk and play better and she beamed back a huge smile, as if realising that she had been accepted into a new friendship.
I never want my children to feel ashamed of asking a question - without a questioning mind, we do not learn, and a day when nothing new is learnt, is a day wasted. I was so proud of the way my sons handled this situation today and I hope part of that relates to the way we have brought them up.
I am also overjoyed that this weekend they have again made new friends with kids who are deaf or who are brothers or sisters of a deaf child. It is so important that they learn that deafness is not a barrier to life, but simply a different path. Seeing hearing technology in our house is not an issue for our children and part of that comfort comes from making friends who also use hearing technology and sign language. We don't usually see the kids signing together, but this weekend we have seen plenty of signing between parents and children, which of course we are trying to do as much as possible and experiences like this, help our kids to see that we are not the only family behaving in this way.
We are so grateful for the NDCS for giving us the opportunity to attend this weekend and for the families we have met. The experiences we have shared this weekend are almost as useful as the sign language we have learnt. We have much more to learn tomorrow and I guess I better get some sleep to prepare, but I know we will be going home feeling positive about deafness, cochlear implants, parenting and the future, no matter what it may hold.
Goodnight & thanks for reading,
Saz xx
I am sitting in a still and quiet hotel bedroom, with five sleepers all around me, they are completely exhausted. I guess I am too, but the lure of a cuppa and some chocolate on my own (and some time to read FB and update my blog was too irresistible!)
This weekend, we are on an NDCS Family Sign Language weekend. We are learning so much! Today topics ranged from greeting people, learning the alphabet, spelling out our names, learning numbers and reciting mobile numbers. We also importantly learnt the signs for deaf and hearing.
It is so lovely and therapeutic to come together with a diverse group of people, of whom many were strangers to me, sharing our only common bond of having a deaf child in the family. We have bonded and laughed, leant and giggled - we have had fun - whilst our children were being expertly looked after. It is such a weight off a parent's mind, to know that their child (or children) is being looked after, safe in the knowledge that we will be called should anything be needed. This reassurance allowed us to learn sign language today for several hours with two expert teachers. We learnt so much, because of the teaching, but also because it was so much fun! It's just so much easier to learn when you're laughing.
My next BSL exam is coming up and so this weekend was great timing for me to get in some extra practice!
However, my joy today especially came from the children, as usual you might think, and their reactions to disability. Now, my kids are encouraged to always ask questions - if they are not sure if their questions are appropriate, they should ask us (hubby or I) first, but if it's a friendly question, we encourage them to ask the person or family themselves. So today they commented on a little girl who was the same age as one of our sons, who happened to be using a wheelchair. Initially they stated, we saw a girl in a wheelchair and she is only 3!!! Why is that? Of course, we couldn't see the little girl now and I had no idea why she needed a wheelchair. However, later on I spotted her and so I stopped her mummy & said that my boys thought it was brilliant that her daughter had a wheelchair and she was only 3!
What followed was a beautiful show of acceptance that only kids can do (I try everyday to be more like a child in my acceptance of people, but their innocence makes it so much easier). The mummy was pleased I had stopped her and called her daughter over, I called over my two older sons (aged 7 & 5), we all then had a chat with our new friend and told her we thought her "magic wheels" were cool, there are like my duaghter's "Magic Ears", they help you do something you couldn't do if you didn't have the magic. The little girl (who is actually 4), showed us her wheels - it was actually a walking frame and not a chair, she was very proud and slightly bashful at our boys' excitement toward her wheels - a reaction I don't think she must be used to. The boys told her they thought it was great she had magic wheels to allow her to walk and play better and she beamed back a huge smile, as if realising that she had been accepted into a new friendship.
I never want my children to feel ashamed of asking a question - without a questioning mind, we do not learn, and a day when nothing new is learnt, is a day wasted. I was so proud of the way my sons handled this situation today and I hope part of that relates to the way we have brought them up.
I am also overjoyed that this weekend they have again made new friends with kids who are deaf or who are brothers or sisters of a deaf child. It is so important that they learn that deafness is not a barrier to life, but simply a different path. Seeing hearing technology in our house is not an issue for our children and part of that comfort comes from making friends who also use hearing technology and sign language. We don't usually see the kids signing together, but this weekend we have seen plenty of signing between parents and children, which of course we are trying to do as much as possible and experiences like this, help our kids to see that we are not the only family behaving in this way.
We are so grateful for the NDCS for giving us the opportunity to attend this weekend and for the families we have met. The experiences we have shared this weekend are almost as useful as the sign language we have learnt. We have much more to learn tomorrow and I guess I better get some sleep to prepare, but I know we will be going home feeling positive about deafness, cochlear implants, parenting and the future, no matter what it may hold.
Goodnight & thanks for reading,
Saz xx
Thursday 19 March 2015
Excited Exhaustion
19th March 2015
Apologies now for a short & rushed post.
This last week has disappeared so quickly, I can hardly take it in.
The boys have been sick (just good old winter bugs), appointments were postponed and rescheduled, I've been prepping for some teaching coming up, hubby has been working lots. However, once better, the boys got time off school for St Patrick's day which helped cheer everyone up & it's nearly easter - hopefully there will be some family & relaxing time.
On the implant front, Princess and another review appointment - three weeks post activation! She actually had a score in her audiogram for the first time ever! She was heating some noises at 60dB - amazing! We are now seeing responses to lots of environmental noises & even some speech! We are flabbergasted! We never could have expected so much, so soon. I am proceeding with caution, as I mentioned before, I am always ready for a plateaux and whilst I hope it doesent come, I don't want to be caught off guard if it does.
Even better news is that our Princess seems to be exhibiting pleasure at some of the noises she has heard, she has turned to me a few times after hearing a noise & smiled - I am so happy & relieved. Deciding on implants is such a huge decision to make, especially on someone else's behalf, so to see positive results and pleasure on my daughters face, fills me with delight.
This week saw us educate our health visitor on cochlear implants and warn her of the extra out-of-hours or A&E attendances we may make due to the low threshold for infection for an implanted patient and also the risk posed by head injuries. I was also able to let her see our princess react to sound during her 12 month assessment, which was just beautiful.
It's going to be another busy weekend, but hey, what's new? So although its goodnight for now, I will endeavour to update more frequently in the future!
Thanks for reading, as always,
Sara
Apologies now for a short & rushed post.
This last week has disappeared so quickly, I can hardly take it in.
The boys have been sick (just good old winter bugs), appointments were postponed and rescheduled, I've been prepping for some teaching coming up, hubby has been working lots. However, once better, the boys got time off school for St Patrick's day which helped cheer everyone up & it's nearly easter - hopefully there will be some family & relaxing time.
On the implant front, Princess and another review appointment - three weeks post activation! She actually had a score in her audiogram for the first time ever! She was heating some noises at 60dB - amazing! We are now seeing responses to lots of environmental noises & even some speech! We are flabbergasted! We never could have expected so much, so soon. I am proceeding with caution, as I mentioned before, I am always ready for a plateaux and whilst I hope it doesent come, I don't want to be caught off guard if it does.
Even better news is that our Princess seems to be exhibiting pleasure at some of the noises she has heard, she has turned to me a few times after hearing a noise & smiled - I am so happy & relieved. Deciding on implants is such a huge decision to make, especially on someone else's behalf, so to see positive results and pleasure on my daughters face, fills me with delight.
This week saw us educate our health visitor on cochlear implants and warn her of the extra out-of-hours or A&E attendances we may make due to the low threshold for infection for an implanted patient and also the risk posed by head injuries. I was also able to let her see our princess react to sound during her 12 month assessment, which was just beautiful.
It's going to be another busy weekend, but hey, what's new? So although its goodnight for now, I will endeavour to update more frequently in the future!
Thanks for reading, as always,
Sara
Thursday 12 March 2015
Wow - 17 days already!
12th March 2015
I am not entirely sure I have time for writing this evening, but I am going to do it anyway as I have been neglecting my blog!
Firstly, I wanted to thank those of you who are reading this, I really appreciate that you are giving up some of your precious time to read my thoughts and I love receiving your comments either on here or via Facebook etc.
Secondly, I simply want to give a little update of where we are right now.
Our princess has now been "switched on" for 17 days!
In the last 17 days we have seen responses to; clapping, clicking fingers, knocking on wood, making repetitive sounds such as Ba Ba Ba, Da Da Da etc, doors slamming, cutlery clinking on crockery, making that clicky horsey noise we all do, me shouting at her brothers (very loud, with cross face, she didn't like that one!), there may have also been reactions to some music & TV, but can't be sure - can't think of anything else right now, although I feel guilty for saying that for something as momentous as this!
In the last 17 days, we have had Princess's 1st birthday, a fabulous family day out, attended an event with NDCS, attended an event with Sound Friends, attended Sign2Music and gained our second certificates, been back to the implant centre for our first follow-up appointment, met with our TOD (teacher of the deaf) and had to reschedule appointments with our SALT (speech and language therapist), HV (health visitor) and nurse for 12 month injections, all because her brothers were sick.
So life has continued on (of course I haven't included diary entries for my hubby, my boys or myself), busy as usual in a family of six, but we continue to be amazed and overwhelmed with happiness, every time we see the miracle of cochlear implants. Time may pass quickly, but it is in the small quiet moments we see what life is all about & it's then I realise how lucky I am to be a wife & mother in this family.
Two quotes come to mind as I am reviewing the last 17 days:
"A journey of a thousand miles begins with a single step" (Lao-tzu, Chinese philosopher)
And
"You won't realise the distance you've walked until you take a look around and realise how far you've been"
Thanks and goodnight,
Sara xx
I am not entirely sure I have time for writing this evening, but I am going to do it anyway as I have been neglecting my blog!
Firstly, I wanted to thank those of you who are reading this, I really appreciate that you are giving up some of your precious time to read my thoughts and I love receiving your comments either on here or via Facebook etc.
Secondly, I simply want to give a little update of where we are right now.
Our princess has now been "switched on" for 17 days!
In the last 17 days we have seen responses to; clapping, clicking fingers, knocking on wood, making repetitive sounds such as Ba Ba Ba, Da Da Da etc, doors slamming, cutlery clinking on crockery, making that clicky horsey noise we all do, me shouting at her brothers (very loud, with cross face, she didn't like that one!), there may have also been reactions to some music & TV, but can't be sure - can't think of anything else right now, although I feel guilty for saying that for something as momentous as this!
In the last 17 days, we have had Princess's 1st birthday, a fabulous family day out, attended an event with NDCS, attended an event with Sound Friends, attended Sign2Music and gained our second certificates, been back to the implant centre for our first follow-up appointment, met with our TOD (teacher of the deaf) and had to reschedule appointments with our SALT (speech and language therapist), HV (health visitor) and nurse for 12 month injections, all because her brothers were sick.
So life has continued on (of course I haven't included diary entries for my hubby, my boys or myself), busy as usual in a family of six, but we continue to be amazed and overwhelmed with happiness, every time we see the miracle of cochlear implants. Time may pass quickly, but it is in the small quiet moments we see what life is all about & it's then I realise how lucky I am to be a wife & mother in this family.
Two quotes come to mind as I am reviewing the last 17 days:
"A journey of a thousand miles begins with a single step" (Lao-tzu, Chinese philosopher)
And
"You won't realise the distance you've walked until you take a look around and realise how far you've been"
Thanks and goodnight,
Sara xx
Saturday 7 March 2015
Sound Appreciation Saturday
7th March 2015
Hmmm.... Did she hear that? Did you see her turn to that sound? I'm pretty sure I did, but now I can't get her to do it again. Maybe I was hoping to hard, maybe it was coincidence, did I imagine it, maybe she did hear it?
That scenario happened several times today.
Being a hearing parent to a deaf child, who has recently had her cochlear implants activated, is a strange & surreal experience.
Princess has never heard a sound before, not one decibel, not one door slam or me shouting to her brothers or loud car engines or workmen drilling and hammering or the deep bass in music. We have relied on BSL since her diagnosis at 6 weeks old and now we are trying to introduce sound. It's weird teaching her to hear considering it was something we just took for granted with our first three boys.
Every morning when we put her CIs on, we clap our hands out behind her to see if she responds, she does. Hurray, that means the devices are working and my baby's magic ears are ready to help her hear. During this fortnight we have to increase the volume every four days by 12%, and our emotions are very much involved - at any stage she could reach the point where she is able to hear our voices, but we don't know when. It's a difficult limbo situation - wanting to see a positive reaction and increasing responses to environmental noises, but also keeping that parental cautiousness that ensures that if she doesn't respond, I won't be devastated.
So far, she hasn't disappointed, her reactions have changed a little each time we have increased the volume. We turned her up again yesterday and it now seems she can her me shouting at her brothers (they were being particularly mischievous today, so there were a few shouting episodes!), maybe something from the tv (she seemed more interested today than she has been before) and even repetitive sound tests eg ba ba ba ba ba ba.
It all feels pretty overwhelming, of course I want her to respond to sound & learn about the whole part of her life she hasn't noticed before, but I also don't want to rush her or inundate her with so much information that other aspects of her development suffer. Princess shows a very clever little nature, she only needs to be shown something once and she will try to copy it, I know she will cope well with learning, but as a protective mummy I want to make sure that she has loads of fun and doesn't feel like she is always working.
In the midst of hearing new sounds and impressing everyone she meets with her responses, she is also managing to show off her new signing skills. This morning she signed for her breakfast and of course, as any baby does, she repeatedly signs to get the lights switched on and off, she also ate loads this afternoon and managed to keep pointing to what she wanted and signed for more and give me that. What is even better is that she is trying to copy her brothers when then sign at her, which is giving them a real boost too!
Tomorrow is another new day, which will probably contain many more of the same emotions and hopefully some new surprises, so I guess I better go get some rest to prepare for it.
Goodnight all,
Sara xx
Hmmm.... Did she hear that? Did you see her turn to that sound? I'm pretty sure I did, but now I can't get her to do it again. Maybe I was hoping to hard, maybe it was coincidence, did I imagine it, maybe she did hear it?
That scenario happened several times today.
Being a hearing parent to a deaf child, who has recently had her cochlear implants activated, is a strange & surreal experience.
Princess has never heard a sound before, not one decibel, not one door slam or me shouting to her brothers or loud car engines or workmen drilling and hammering or the deep bass in music. We have relied on BSL since her diagnosis at 6 weeks old and now we are trying to introduce sound. It's weird teaching her to hear considering it was something we just took for granted with our first three boys.
Every morning when we put her CIs on, we clap our hands out behind her to see if she responds, she does. Hurray, that means the devices are working and my baby's magic ears are ready to help her hear. During this fortnight we have to increase the volume every four days by 12%, and our emotions are very much involved - at any stage she could reach the point where she is able to hear our voices, but we don't know when. It's a difficult limbo situation - wanting to see a positive reaction and increasing responses to environmental noises, but also keeping that parental cautiousness that ensures that if she doesn't respond, I won't be devastated.
So far, she hasn't disappointed, her reactions have changed a little each time we have increased the volume. We turned her up again yesterday and it now seems she can her me shouting at her brothers (they were being particularly mischievous today, so there were a few shouting episodes!), maybe something from the tv (she seemed more interested today than she has been before) and even repetitive sound tests eg ba ba ba ba ba ba.
It all feels pretty overwhelming, of course I want her to respond to sound & learn about the whole part of her life she hasn't noticed before, but I also don't want to rush her or inundate her with so much information that other aspects of her development suffer. Princess shows a very clever little nature, she only needs to be shown something once and she will try to copy it, I know she will cope well with learning, but as a protective mummy I want to make sure that she has loads of fun and doesn't feel like she is always working.
In the midst of hearing new sounds and impressing everyone she meets with her responses, she is also managing to show off her new signing skills. This morning she signed for her breakfast and of course, as any baby does, she repeatedly signs to get the lights switched on and off, she also ate loads this afternoon and managed to keep pointing to what she wanted and signed for more and give me that. What is even better is that she is trying to copy her brothers when then sign at her, which is giving them a real boost too!
Tomorrow is another new day, which will probably contain many more of the same emotions and hopefully some new surprises, so I guess I better go get some rest to prepare for it.
Goodnight all,
Sara xx
Thursday 5 March 2015
Understanding BSL
5th March 2015
It's World Book Day, but I didn't manage to make time to read, however I have grabbed a wee ten minutes now to update my blog, so I guess that gives you something to read and therefore I have contributed to the whole literary celebration.
Following on from my Miserable Monday, I am feeling a lot better. Sometimes there is therapy in simply sharing your feelings and frustrations, writing was a also therapeutic, but the most successful therapy was getting organised again. Life is so busy, organisation is vital to survival! With four kids under 8yrs in the house, there is no time for just going with the flow, as we would end up achieving nothing.
In my reorganisation, I have managed to clear out the boys bedroom (creating space but mostly making me feel better every time I walk into it), restart the family meal planner and begin sorting the huge piles of "stuff to do" at various locations throughout our small house.
Increased planning of my day, has also allowed me to spend more time with my Princess and focus on her "Magic Ears". I desperately need to read her instruction manual, the leaflets on cochlear implants and also communication tips. Despite showing initial signs of response to sound, she is still only hearing deliberately made sounds or the odd loud noise, meaning that we are still relying on sign language.
Every day, Princess's understanding of signs grows, she seems to know everything I sign and often she signs back. Many times I am unable to tell which sign she is attempting, but there are some which are very obvious - milk, food, give me, go over there, fish, more, where. She has also made good attempts at yes & no amongst others recently. I am so happy that Princess is beginning to develop her own communication channels, as a family we really want to allow her to be part of both the Deaf and Hearing communities, therefore her knowledge of BSL will only be advantageous to her future. Personally, I don't agree with those people who get CIs for themselves or their children and then believe they are no longer deaf, I feel that being deaf is an important part of my Princess and I want to respect and be proud of it, not hide it away.
We have started playing with toys and reading books together, sometimes with her big brothers too, where we teach the signs and promote their use. It is so encouraging to see her focus on your hands as soon as they start to move, knowing that you are initiating conversation and she is ready to read you and hopefully respond.
A lovely quote on Facebook I recently saw:
It's World Book Day, but I didn't manage to make time to read, however I have grabbed a wee ten minutes now to update my blog, so I guess that gives you something to read and therefore I have contributed to the whole literary celebration.
Following on from my Miserable Monday, I am feeling a lot better. Sometimes there is therapy in simply sharing your feelings and frustrations, writing was a also therapeutic, but the most successful therapy was getting organised again. Life is so busy, organisation is vital to survival! With four kids under 8yrs in the house, there is no time for just going with the flow, as we would end up achieving nothing.
In my reorganisation, I have managed to clear out the boys bedroom (creating space but mostly making me feel better every time I walk into it), restart the family meal planner and begin sorting the huge piles of "stuff to do" at various locations throughout our small house.
Increased planning of my day, has also allowed me to spend more time with my Princess and focus on her "Magic Ears". I desperately need to read her instruction manual, the leaflets on cochlear implants and also communication tips. Despite showing initial signs of response to sound, she is still only hearing deliberately made sounds or the odd loud noise, meaning that we are still relying on sign language.
Every day, Princess's understanding of signs grows, she seems to know everything I sign and often she signs back. Many times I am unable to tell which sign she is attempting, but there are some which are very obvious - milk, food, give me, go over there, fish, more, where. She has also made good attempts at yes & no amongst others recently. I am so happy that Princess is beginning to develop her own communication channels, as a family we really want to allow her to be part of both the Deaf and Hearing communities, therefore her knowledge of BSL will only be advantageous to her future. Personally, I don't agree with those people who get CIs for themselves or their children and then believe they are no longer deaf, I feel that being deaf is an important part of my Princess and I want to respect and be proud of it, not hide it away.
We have started playing with toys and reading books together, sometimes with her big brothers too, where we teach the signs and promote their use. It is so encouraging to see her focus on your hands as soon as they start to move, knowing that you are initiating conversation and she is ready to read you and hopefully respond.
A lovely quote on Facebook I recently saw:
You can hear with your ears?
Big deal.....
I can hear with my eyes!!
Whilst we have chosen for Princess to get implanted and we will work hard with her to teach her to hear, listen and hopefully speak; we ultimately want to allow her to make her own decisions about hearing technology and communication. However, I absolutely love that she is such a visual learning and that sign seems to be becoming her first language.
Last year I met a Canadian professor at a conference, who had become profoundly deaf at age 19, I was chatting with her (via her ASL interpreter) about my daughter and gaining loads of helpful insights, when she asked to see a picture of of my daughter. Immediately she commented on Princess's eyes - she called them Deaf Eyes, she explained that in the photo she could see the focus in her eyes, the concentration, the energy, her eyes were trying to take in everything and were almost working as more than one sense. I immediately understood what she was talking about. So many people comment on Princess's eyes, how beautiful they are and how she misses nothing, I guess this helps her understand her world and it has certainly helped her communication skills develop due to her sense of curiosity. Here's hoping the curiosity continues and helps with hearing, listening and speech development.
Time for bed now - tomorrow we need to increase the volume of the CIs again, looking forward to seeing what happens & of course I will share my observations with you xx
Monday 2 March 2015
Miserable Monday?
2nd March 2015
We all have those days, the days that are really difficult, the days were we feel like we have failed ourselves and others, the days when everything seems like it's too much and we can't see how to make things better.
Today was one of those days for me.
Princess was back to the implant centre this morning. Her hearing tests went really well and she was fabulous during mapping. I felt emotional, I felt inadequate and I felt like it was all too much. I don't know why it happened, it came out of the blue after our wonderful weekend, maybe I was just exhausted, after all sleep deprivation causes a mother many a worry.
Maybe I have never sorted my emotions from her diagnosis, I feel like they are a burden on my shoulders. I have found writing this blog therapeutic, until today I wasn't really sure why, but as I write I have to order my feelings and try to make sense of them.
Life is difficult, that's no surprise, everyone has their stresses and complications and I am no different. However, the problem comes when you heap unrealistic expectations of yourself on your own shoulders. My husband, my children and the rest of my family are so caring, supportive and wonderful - they are always there when I need them. Sometimes though, you don't want to share or be totally open and honest with those closest to you. (Of course, I ruined that with this blog since they are probably reading this!)
I guess I still feel sad that my perfect Princess is deaf; although she will hear with her magic ears, she is still deaf and always will be. I am proud to be her mummy, but I am also sad that she will have to struggle at times, to communicate or to be accepted or to "fit in".
My heart is heavy at times, but my head tells me not to be so ridiculous, in the time in which we are living, communication is easy - mobile phones, text, email, skype, FaceTime, YouTube - there are so many ways to communicate that being deaf isn't so much of an isolation any more. We have been blessed that Princess was suitable for CIs and that she seems to be responding really well to sound even in these initial days, but as every mother does, I still worry about her future and the unknowns in it. I hope that she will be happy with the decision we have made to give her CIs and teach her sign language, I hope that she will feel part of both the Deaf and Hearing worlds, so that she can make her own choices about her identity and future.
In order to relieve some of my miserable Monday stress, I resolve this evening to plan my days more efficiently so that I may have time to get my chores done, but most importantly, to dedicate the time I want to my children. They are my world and they need me as much as I need them. I need to be productive, but I also need to feel proud of my accomplishments and so I need to set goals to achieve.
My goals for the short term are:
1. To get my house in order
2. To complete my reading on CIs & the therapies that Princess is beginning
3. To organise my time better
Longer term:
1. Continue with level 1 BSL and push on higher up the levels
2. To improve links between the Deaf & CI communities
Thank you to my husband for putting up with my Miserable Monday! I promise I won't be so grumpy tomorrow!
Thank you all for reading, please share too if you like.
We all have those days, the days that are really difficult, the days were we feel like we have failed ourselves and others, the days when everything seems like it's too much and we can't see how to make things better.
Today was one of those days for me.
Princess was back to the implant centre this morning. Her hearing tests went really well and she was fabulous during mapping. I felt emotional, I felt inadequate and I felt like it was all too much. I don't know why it happened, it came out of the blue after our wonderful weekend, maybe I was just exhausted, after all sleep deprivation causes a mother many a worry.
Maybe I have never sorted my emotions from her diagnosis, I feel like they are a burden on my shoulders. I have found writing this blog therapeutic, until today I wasn't really sure why, but as I write I have to order my feelings and try to make sense of them.
Life is difficult, that's no surprise, everyone has their stresses and complications and I am no different. However, the problem comes when you heap unrealistic expectations of yourself on your own shoulders. My husband, my children and the rest of my family are so caring, supportive and wonderful - they are always there when I need them. Sometimes though, you don't want to share or be totally open and honest with those closest to you. (Of course, I ruined that with this blog since they are probably reading this!)
I guess I still feel sad that my perfect Princess is deaf; although she will hear with her magic ears, she is still deaf and always will be. I am proud to be her mummy, but I am also sad that she will have to struggle at times, to communicate or to be accepted or to "fit in".
My heart is heavy at times, but my head tells me not to be so ridiculous, in the time in which we are living, communication is easy - mobile phones, text, email, skype, FaceTime, YouTube - there are so many ways to communicate that being deaf isn't so much of an isolation any more. We have been blessed that Princess was suitable for CIs and that she seems to be responding really well to sound even in these initial days, but as every mother does, I still worry about her future and the unknowns in it. I hope that she will be happy with the decision we have made to give her CIs and teach her sign language, I hope that she will feel part of both the Deaf and Hearing worlds, so that she can make her own choices about her identity and future.
In order to relieve some of my miserable Monday stress, I resolve this evening to plan my days more efficiently so that I may have time to get my chores done, but most importantly, to dedicate the time I want to my children. They are my world and they need me as much as I need them. I need to be productive, but I also need to feel proud of my accomplishments and so I need to set goals to achieve.
My goals for the short term are:
1. To get my house in order
2. To complete my reading on CIs & the therapies that Princess is beginning
3. To organise my time better
Longer term:
1. Continue with level 1 BSL and push on higher up the levels
2. To improve links between the Deaf & CI communities
Thank you to my husband for putting up with my Miserable Monday! I promise I won't be so grumpy tomorrow!
Thank you all for reading, please share too if you like.
Sunday 1 March 2015
Trampolining?!
1st March 2015
What a busy Sunday!
An early morning was called for in order to let the Princess open her presents from yesterday's party as she was too tired to do it then.
Our first event today was Family Sign Language, run by the NDCS, we enjoyed brilliant few hours with other families leaning some new signs relating to wildlife - we did some bug hunting, pond dipping and learning about animals and birds. There's not many sign language courses that teach you signs for slugs, butterflies and worms! The kids loved every minute and each FSL event helps us feel more confident using sign by giving us the chance to converse with profoundly deaf people using BSL as their first language. Of course, it's also a lovely social occasion, meeting other families with deaf kids and reconnecting with people we have met on previous courses.
Next we rushed down to meet up with Sound Friends for an adventurous afternoon.
That is when I discovered that my little Princess adores the trampoline! She giggled and smiled and signed for "more" continuously - she loved it & hopefully the videos taken by my parents will reflect some of that! Of course the boys expended much energy bouncing, playing jump dodgeball, throwing themselves into foam pits, shooting some hoops and trying to run on trampolines.
Of course, then I had to be the mummy I pretend I am to my children, the one who isn't scared of anything! I am terrified of heights, well falling from heights is really was scares the pants of me, but today I had to pretend I wasn't. It was pretty successful and I came away feeling very proud that I was able to complete part of the high (tremendously high!) ropes course.
So another exhausting day, but I feel very fulfilled knowing that we are progressing with our utilisation of sign language, my daughters progress with her hearing and enjoyment of life and knowing how my boys are getting so comfortable with deaf people and children.
Almost time for bed, before another visit to the CI centre for another mapping assessment & tests to see how Princess is progressing - exciting times!
What a busy Sunday!
An early morning was called for in order to let the Princess open her presents from yesterday's party as she was too tired to do it then.
Our first event today was Family Sign Language, run by the NDCS, we enjoyed brilliant few hours with other families leaning some new signs relating to wildlife - we did some bug hunting, pond dipping and learning about animals and birds. There's not many sign language courses that teach you signs for slugs, butterflies and worms! The kids loved every minute and each FSL event helps us feel more confident using sign by giving us the chance to converse with profoundly deaf people using BSL as their first language. Of course, it's also a lovely social occasion, meeting other families with deaf kids and reconnecting with people we have met on previous courses.
Next we rushed down to meet up with Sound Friends for an adventurous afternoon.
That is when I discovered that my little Princess adores the trampoline! She giggled and smiled and signed for "more" continuously - she loved it & hopefully the videos taken by my parents will reflect some of that! Of course the boys expended much energy bouncing, playing jump dodgeball, throwing themselves into foam pits, shooting some hoops and trying to run on trampolines.
Of course, then I had to be the mummy I pretend I am to my children, the one who isn't scared of anything! I am terrified of heights, well falling from heights is really was scares the pants of me, but today I had to pretend I wasn't. It was pretty successful and I came away feeling very proud that I was able to complete part of the high (tremendously high!) ropes course.
So another exhausting day, but I feel very fulfilled knowing that we are progressing with our utilisation of sign language, my daughters progress with her hearing and enjoyment of life and knowing how my boys are getting so comfortable with deaf people and children.
Almost time for bed, before another visit to the CI centre for another mapping assessment & tests to see how Princess is progressing - exciting times!
Saturday 28 February 2015
525,600 minutes (From a Fav musical, RENT)
28th February 2015
My baby Princess has turned one! 525,600 minutes ago (or thereabouts), we welcomed her into this world after a trouble free pregnancy for her, although a pretty painful one for my hips! She was born in the caul (in her membranes) which is pretty rare and she definitely deserved that entrance as she is one in a million!
The news that our Princess was profoundly deaf stunned us emotionally and it's probably only now that we are beginning to work through how we feel and how her deafness effects us. However, despite all the negativity surrounding the diagnosis of a "special need", we are daily astounded by her joyfulness, intelligence and progress.
The Princess has a special talent for making people fall in love with her, I believe it is mostly to do with her amazing eye contact, she has "Deaf Eyes" which take in everything. You cannot sneak up on her or try to hide something when she is around, she sees it all and there no fooling her, even at this young age. Often people don't believe us that she is deaf because she is so receptive to the conversation and behaves so appropriately at all times, especially when people are telling funny stories - it's like she can feel which emotion to portray and she does it spectacularly.
Her first six days in the hearing world (with her CIs), has been astonishing. She can now hear clapping, clicking fingers, shouting, knocking and banging pots & toys. There may also have been reactions to squeaky doors, whistling and the Hoover. Although she hasn't shown emotion towards hearing any sounds yet, she is very curious and wants to know where the sound comes from and what it is, which is amazing progress and for which we are constantly thankful. We continue to hope that our Princess will receive enough hearing to hear speech so we can tell her (as well as sign to her), that we love her and maybe even one day we might be able to hear her beautiful voice say it in return!
Today, we sung & signed the "Happy Birthday Song" to Princess and she loved it all, I hope she maybe heard a little of it, but I will never know. What I do know is that we have really learnt the value of communication and I am so proud of my boys (7, 5 & 3) who are learning to sign for their sister too.
Today was an exhausting, but very special day as we celebrated her first birthday with family and friends - some quiet and relaxing celebrations at home, with some manic, ear-bursting celebrations at her party (part of which actually required her implants to be switched off!).
Here's to many more happy & healthy years to come and if she continues the way she has begun, our little Princess will have an amazing future ahead of her.
We love you, little Princess xx
My baby Princess has turned one! 525,600 minutes ago (or thereabouts), we welcomed her into this world after a trouble free pregnancy for her, although a pretty painful one for my hips! She was born in the caul (in her membranes) which is pretty rare and she definitely deserved that entrance as she is one in a million!
The news that our Princess was profoundly deaf stunned us emotionally and it's probably only now that we are beginning to work through how we feel and how her deafness effects us. However, despite all the negativity surrounding the diagnosis of a "special need", we are daily astounded by her joyfulness, intelligence and progress.
The Princess has a special talent for making people fall in love with her, I believe it is mostly to do with her amazing eye contact, she has "Deaf Eyes" which take in everything. You cannot sneak up on her or try to hide something when she is around, she sees it all and there no fooling her, even at this young age. Often people don't believe us that she is deaf because she is so receptive to the conversation and behaves so appropriately at all times, especially when people are telling funny stories - it's like she can feel which emotion to portray and she does it spectacularly.
Her first six days in the hearing world (with her CIs), has been astonishing. She can now hear clapping, clicking fingers, shouting, knocking and banging pots & toys. There may also have been reactions to squeaky doors, whistling and the Hoover. Although she hasn't shown emotion towards hearing any sounds yet, she is very curious and wants to know where the sound comes from and what it is, which is amazing progress and for which we are constantly thankful. We continue to hope that our Princess will receive enough hearing to hear speech so we can tell her (as well as sign to her), that we love her and maybe even one day we might be able to hear her beautiful voice say it in return!
Today, we sung & signed the "Happy Birthday Song" to Princess and she loved it all, I hope she maybe heard a little of it, but I will never know. What I do know is that we have really learnt the value of communication and I am so proud of my boys (7, 5 & 3) who are learning to sign for their sister too.
Today was an exhausting, but very special day as we celebrated her first birthday with family and friends - some quiet and relaxing celebrations at home, with some manic, ear-bursting celebrations at her party (part of which actually required her implants to be switched off!).
Here's to many more happy & healthy years to come and if she continues the way she has begun, our little Princess will have an amazing future ahead of her.
We love you, little Princess xx
Thursday 26 February 2015
Wow! What a day!
26th February 2015
I am amazed already by my little Princess. Four days activated and she responded repeatedly to her Grnadad making a sound behind her, she stopped playing and turned to him consistently each time. We are amazed by her!
As if that wasn't enough, later this afternoon, she was showing off her signing skills. In BSL I asked her where the lights were and she replied in sign by showing me the ceiling lights which were on in the kitchen. She signed "lights on" several times and showed my hubby them too when he asked.
People told us that CIs were miracles and we are already starting to see why they say it. I know that our journey will not always be smooth or easy, but we are loving the start of the ride!
I am amazed already by my little Princess. Four days activated and she responded repeatedly to her Grnadad making a sound behind her, she stopped playing and turned to him consistently each time. We are amazed by her!
As if that wasn't enough, later this afternoon, she was showing off her signing skills. In BSL I asked her where the lights were and she replied in sign by showing me the ceiling lights which were on in the kitchen. She signed "lights on" several times and showed my hubby them too when he asked.
People told us that CIs were miracles and we are already starting to see why they say it. I know that our journey will not always be smooth or easy, but we are loving the start of the ride!
Wednesday 25 February 2015
Happy International Cochlear Implant Day
25th February 2015
Well since it's International Cochlear Implant Day, I thought that I would check out some historical info on CIs (Cochlear Implants) and was very surprised at what I found.
Electrical stimulation of the auditory nerve began back in the 18th Century with Alessandro Volta, who connected a battery to two metal rods and inserted them into his ears! Further attempts occurred during the 18th & 19th centuries, showing continuous improvements, but no one could yet find a satisfactory solution to helping the hearing of those who were profoundly deaf.
Throughout the 1930s & 40s, interest grew and many more experiments were carried out, increasing as the years went on: 1950, 1957, 1964, 1966, 1971 & 1976 all saw research projects developing the idea of artificial electrical stimulation of the auditory nerve.
In 1972 the speech processor was developed and produced great results, leading to 1000s of devices being fitted in the 1970s & mid-80s. 1980 ensured access to sound by children, when the age limit criteria was lowered from 18 years to 2 yeas of age.
1984 saw the introduction of multi channel devices, increasing sound and speech perception for users.
Since then, development has produced very successful devices, producing high levels of sound recognition and speech perception amongst the Implant community. Results for patients now commonly include the development of normal speech and language and hearing test results surpassing those of their hearing peers! Many implanted children are now schooled in mainstream classrooms with minimal assistance required for them to reach their full potentials.
On a personal note, I am forever grateful for the gift of hearing which we have been able to give to our profoundly deaf princess, cochlear implants are a technological miracle and even two days after her activation we are already seeing results.
Today, we increased our Princess to program 2, increasing the volume inputted by 3%, which is obviously very gradual to allow her to adjust to this new sense and also hopefully prevent any fear or pain caused by excessive noise. Although she can still only hear very loud noises, we noticed more reactions today - knocking against wood, banging the saucepan and bashing plastic toys together all seemed to illicit responses today. The exhaustion however, continues and Princess is needing long naps throughout the day and extra sleep at night, shortening the time she has for listening, but this will pass and I have every faith in her ability to learn to listen & discern sound from her environment.
I do however, want to emphasise that our Princess is still Deaf and always will be.
Whilst CIs allow the user to hear when wearing the devices, they revert to their previous level of hearing once the devices are removed at various points throughout the day e.g. bath/shower, swimming, humid environments or bedtime. We desperately want to make our family bilingual (English & BSL), in order that we can always fully communicate with our Little Princess whether she is wearing her "Magic Ears" or not. My blog will touch on the challenges of hearing families learning BSL for a deaf child and how we will try to integrate into the Deaf community to ensure that our Princess will have links with both Deaf and Hearing peers, in order that she can decide herself how she wants to communicate in the future.
Well since it's International Cochlear Implant Day, I thought that I would check out some historical info on CIs (Cochlear Implants) and was very surprised at what I found.
Electrical stimulation of the auditory nerve began back in the 18th Century with Alessandro Volta, who connected a battery to two metal rods and inserted them into his ears! Further attempts occurred during the 18th & 19th centuries, showing continuous improvements, but no one could yet find a satisfactory solution to helping the hearing of those who were profoundly deaf.
Throughout the 1930s & 40s, interest grew and many more experiments were carried out, increasing as the years went on: 1950, 1957, 1964, 1966, 1971 & 1976 all saw research projects developing the idea of artificial electrical stimulation of the auditory nerve.
In 1972 the speech processor was developed and produced great results, leading to 1000s of devices being fitted in the 1970s & mid-80s. 1980 ensured access to sound by children, when the age limit criteria was lowered from 18 years to 2 yeas of age.
1984 saw the introduction of multi channel devices, increasing sound and speech perception for users.
Since then, development has produced very successful devices, producing high levels of sound recognition and speech perception amongst the Implant community. Results for patients now commonly include the development of normal speech and language and hearing test results surpassing those of their hearing peers! Many implanted children are now schooled in mainstream classrooms with minimal assistance required for them to reach their full potentials.
On a personal note, I am forever grateful for the gift of hearing which we have been able to give to our profoundly deaf princess, cochlear implants are a technological miracle and even two days after her activation we are already seeing results.
Today, we increased our Princess to program 2, increasing the volume inputted by 3%, which is obviously very gradual to allow her to adjust to this new sense and also hopefully prevent any fear or pain caused by excessive noise. Although she can still only hear very loud noises, we noticed more reactions today - knocking against wood, banging the saucepan and bashing plastic toys together all seemed to illicit responses today. The exhaustion however, continues and Princess is needing long naps throughout the day and extra sleep at night, shortening the time she has for listening, but this will pass and I have every faith in her ability to learn to listen & discern sound from her environment.
I do however, want to emphasise that our Princess is still Deaf and always will be.
Whilst CIs allow the user to hear when wearing the devices, they revert to their previous level of hearing once the devices are removed at various points throughout the day e.g. bath/shower, swimming, humid environments or bedtime. We desperately want to make our family bilingual (English & BSL), in order that we can always fully communicate with our Little Princess whether she is wearing her "Magic Ears" or not. My blog will touch on the challenges of hearing families learning BSL for a deaf child and how we will try to integrate into the Deaf community to ensure that our Princess will have links with both Deaf and Hearing peers, in order that she can decide herself how she wants to communicate in the future.
Tuesday 24 February 2015
Exhausted Princess
24th February 2015
This morning was relaxing - visiting some family & shopping for a certain little Princess's birthday which is coming very soon.
Today, we saw sound reactions to the kitchen bin slamming, banging pots and pans and also knocking on the dining room table. We are amazed already and it's only one day post activation!
However, this listening must take it's toll, as Princess was totally exhausted by this afternoon and slept for a few hours, got up, had a drink, played with her brothers, ate dinner and went back to bed. We had to waken her at 7.30pm for a bedtime bottle and to put on some PJs to make her more comfy. Needless to say, she went straight back to bed and is far away in the land of dreams as I write.
Tomorrow is the anniversary of the first cochlear implant, 60 years ago - Wow!
This morning was relaxing - visiting some family & shopping for a certain little Princess's birthday which is coming very soon.
Today, we saw sound reactions to the kitchen bin slamming, banging pots and pans and also knocking on the dining room table. We are amazed already and it's only one day post activation!
However, this listening must take it's toll, as Princess was totally exhausted by this afternoon and slept for a few hours, got up, had a drink, played with her brothers, ate dinner and went back to bed. We had to waken her at 7.30pm for a bedtime bottle and to put on some PJs to make her more comfy. Needless to say, she went straight back to bed and is far away in the land of dreams as I write.
Tomorrow is the anniversary of the first cochlear implant, 60 years ago - Wow!
Monday 23 February 2015
The first day of the rest of our lives
23rd February 2015..... It's a date which will be etched on my mind for the rest of time. It's the date my Little Princess first heard sound, through the miracle of cochlear implants.
Despite the fact that today started as any other Monday - packing school bags, hurrying the kids to eat their breakfast and get dressed for school, making packed lunches, sorting PE kits & school money envelopes. We managed to keep organised and leave our eldest two boys off at school, then our third son was taken to his grandparents house, before we travelled to the implant centre for what could turn out to be the most important day of our lives.
Princess is of course oblivious to everything, she will be 1 year old in a few days and she was born profoundly deaf in both ears, meaning that she couldn't even hear a jet engine if she was standing beside it. We tried hearing aids, but they were not powerful enough, so we all began learning BSL (British Sign Language) so that we could talk to our Princess. I am attending night classes to learn BSL and then I teach my hubby & kids what I have learned. I also take princess and the youngest of her brothers (3yrs old) to Sign2Music, where we learn more child-focussed signs, suitable for nursery rhymes and story time.
The last 12 months have been a rollercoaster ride for our family, Princess arrived a few days late after a non-eventful fourth pregnancy, looking absolutely perfect and after a few stumbles, I now realise she still is. Fourth babies get treated a little different and their mummies are allowed to make a few more decisions than perhaps is possible with those less experienced parents - meaning that we all went home in the evening after Princess's arrival at 10.51am. Of course that meant we didn't get screened for the newborn hearing test before we left.
Ten days of perfection followed, before we attended our first hearing test, only to be told, she had failed, but it was probably due to her ears still being wet after birth. We were then referred to the hospital for further testing, which happened a few weeks later. At this stage, we weren't worried at all, we were convinced we could see responses to sound, so we were sure Princess would pass her next test.
But...... She didn't.
Again, we assumed, it was nothing to worry about, kids fail tests all the time, then they pass the retest.
But...... She failed that too, in fact this time we were told that Princess had not shown any responses to any of the tests she had taken. I was on my own at the hospital with her and I didn't really understand what they were telling me. I knew it meant she had a problem with her hearing, but I didn't have a clue what lay ahead of us.
After managing to tell my husband, my parents & my in-laws, we realised we needed more information and managed to find support from NDCS (National Deaf Children's Society) thankfully! Which lead us to a local support group, Sound Friends. Talking to other parents helped us to feel supported and to realise that even if Princess could never hear a sound, she could still realise all her aspirations and lead a full life. We also found out information on the journey that lay ahead for us as parents, a family and integrating the Deaf and Hearing communities.
Anyway, over the next few months, we attended numerous NDCS & Sound Friends events allowing us to gain knowledge about deafness and options open to us. We attended the Regional Implant Centre several times for testing, including an MRI/CT scan at a local hospital which required a General Anaesthetic (something which every parent dreads).
Thankfully all the testing was completed successfully and we were told on 1st December 2014 that our Princess was a suitable candidate for cochlear implants - hurray!
Christmas was a wonderful time for us all, knowing that our family was complete and happy, all under one roof, it was all we had ever dreamed of. The only thing that was wrong was that our little Princess couldn't hear us, but she was young & she loved to babble so most people didn't notice there was a problem at all!
The New Year came and we were given 5th January 2015 as our date for bilateral implantation. Unfortunately this had to be postponed due to an infection risk, despite the total anticlimax, we were grateful that our daughter was not going to be exposed to any unnecessary risks. We were rescheduled for 19th January 2015, when Princess successfully underwent surgery for bilateral implantation of cochlear implants. She recovered very well and we were so happy with her progress, but we're always wondering if we had made the right choice for our Princess.
On 9th February, we were given all our equipment and shown how to maintain everything. From this day, Princess began wearing her external devices to allow her to get used to wearing them, although they would not be "switched on" until 23rd February. The next two weeks went very well, she didn't seem to mind wearing all her equipment and continued to show progress in her babbling and signing.
And that, is how we arrived at today, 23rd February 2015 - activation day!
Today was one of those days that although you know it's important, emotional, life-changing, you can't decide how you feel about it because it hasn't quite sunk in yet. Princess performed perfectly, reacting to each of the twelve frequencies in ear each and even turned to a drum and then investigated the hand dryers in the bathrooms later.
Now, it's time for much needed sleep after an exhilarating & exhausting day.
Goodnight xx
Despite the fact that today started as any other Monday - packing school bags, hurrying the kids to eat their breakfast and get dressed for school, making packed lunches, sorting PE kits & school money envelopes. We managed to keep organised and leave our eldest two boys off at school, then our third son was taken to his grandparents house, before we travelled to the implant centre for what could turn out to be the most important day of our lives.
Princess is of course oblivious to everything, she will be 1 year old in a few days and she was born profoundly deaf in both ears, meaning that she couldn't even hear a jet engine if she was standing beside it. We tried hearing aids, but they were not powerful enough, so we all began learning BSL (British Sign Language) so that we could talk to our Princess. I am attending night classes to learn BSL and then I teach my hubby & kids what I have learned. I also take princess and the youngest of her brothers (3yrs old) to Sign2Music, where we learn more child-focussed signs, suitable for nursery rhymes and story time.
The last 12 months have been a rollercoaster ride for our family, Princess arrived a few days late after a non-eventful fourth pregnancy, looking absolutely perfect and after a few stumbles, I now realise she still is. Fourth babies get treated a little different and their mummies are allowed to make a few more decisions than perhaps is possible with those less experienced parents - meaning that we all went home in the evening after Princess's arrival at 10.51am. Of course that meant we didn't get screened for the newborn hearing test before we left.
Ten days of perfection followed, before we attended our first hearing test, only to be told, she had failed, but it was probably due to her ears still being wet after birth. We were then referred to the hospital for further testing, which happened a few weeks later. At this stage, we weren't worried at all, we were convinced we could see responses to sound, so we were sure Princess would pass her next test.
But...... She didn't.
Again, we assumed, it was nothing to worry about, kids fail tests all the time, then they pass the retest.
But...... She failed that too, in fact this time we were told that Princess had not shown any responses to any of the tests she had taken. I was on my own at the hospital with her and I didn't really understand what they were telling me. I knew it meant she had a problem with her hearing, but I didn't have a clue what lay ahead of us.
After managing to tell my husband, my parents & my in-laws, we realised we needed more information and managed to find support from NDCS (National Deaf Children's Society) thankfully! Which lead us to a local support group, Sound Friends. Talking to other parents helped us to feel supported and to realise that even if Princess could never hear a sound, she could still realise all her aspirations and lead a full life. We also found out information on the journey that lay ahead for us as parents, a family and integrating the Deaf and Hearing communities.
Anyway, over the next few months, we attended numerous NDCS & Sound Friends events allowing us to gain knowledge about deafness and options open to us. We attended the Regional Implant Centre several times for testing, including an MRI/CT scan at a local hospital which required a General Anaesthetic (something which every parent dreads).
Thankfully all the testing was completed successfully and we were told on 1st December 2014 that our Princess was a suitable candidate for cochlear implants - hurray!
Christmas was a wonderful time for us all, knowing that our family was complete and happy, all under one roof, it was all we had ever dreamed of. The only thing that was wrong was that our little Princess couldn't hear us, but she was young & she loved to babble so most people didn't notice there was a problem at all!
The New Year came and we were given 5th January 2015 as our date for bilateral implantation. Unfortunately this had to be postponed due to an infection risk, despite the total anticlimax, we were grateful that our daughter was not going to be exposed to any unnecessary risks. We were rescheduled for 19th January 2015, when Princess successfully underwent surgery for bilateral implantation of cochlear implants. She recovered very well and we were so happy with her progress, but we're always wondering if we had made the right choice for our Princess.
On 9th February, we were given all our equipment and shown how to maintain everything. From this day, Princess began wearing her external devices to allow her to get used to wearing them, although they would not be "switched on" until 23rd February. The next two weeks went very well, she didn't seem to mind wearing all her equipment and continued to show progress in her babbling and signing.
And that, is how we arrived at today, 23rd February 2015 - activation day!
Today was one of those days that although you know it's important, emotional, life-changing, you can't decide how you feel about it because it hasn't quite sunk in yet. Princess performed perfectly, reacting to each of the twelve frequencies in ear each and even turned to a drum and then investigated the hand dryers in the bathrooms later.
Now, it's time for much needed sleep after an exhilarating & exhausting day.
Goodnight xx
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