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
Sunday 29 March 2015
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!
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