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
Showing posts with label response to sound. Show all posts
Showing posts with label response to sound. Show all posts
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
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
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!
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
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
Subscribe to:
Posts (Atom)