Tag Archives: deafness

Apologies….. I fell off the grid!

Firstly, let me apologise for just leaving like that! So  much has been happening lately which has been sucking up my time and energy. By the time night comes upon me and I have some time to sit and write, I can hardly string a sentence together. It’s been a whirlwind recently.

Anyway, I’ll keep this brief as I have to dart out shortly.

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First of all, I am concerned that the walk of death is soon upon me. it’s in two weeks to be exact and the weather has not been my friend of late so I haven’t gotten in as much training as I would have liked. I am still of the mind set that walking is the most natural thing in the world and God gave us two legs for walking right….. so walk 100km I will. By hook or by crook!!! Now some of you may be thinking that I am crazy. In fact I know a lot of you are thinking that I am crazy, going into this with not having trained as much as I should have. I think I am crazy too….. Hence why I am FORCING myself to alter my mindset to the rather laizze faire approach or I might give up before I start!

Secondly, I now HAVE to have this mindset as my wonderful walking partner and good friend in crime has had to pull out for very good and personal reasons. No hard feelings there at all and I still love her to death. I will scrabble around and try to find an alternative partner as the night walking on my own is more than a little daunting. Hopefully the organisers will allow a last minute substitute under the circumstances if I can even find one but if not, I am determined to go ahead and do this on my own nonetheless. I shall just stalk some other team and hang around behind them as though minding my own business whilst pretending I’m not killing myself trying to keep up. Maybe one of them will take pity on me and allow me to walk with their team. Perhaps I should bake cookies and take them to share in exchange for walking partners or something???!!!

I’ve also been under a lot of stress owing to the fact that there has been a slight neighbourhood dispute with the apartment below mine. Ironically…. here’s his issue…. we should NOT be WALKING in our apartment!!! So here I am trying to do as much walking training as possible and yet when I get home, he’s taking issue with the fact that I am walking! Honestly… it’s just coming out of all orifices right now!

Anyways… Here’s the good news!!!


First Born has now had his 18th birthday celebrations! Let’s not forget that the walk I am doing in two weeks is in commemoration of his birthday to raise money for SENSE the deafblind charity here in the UK. This has been a real time of reflection for me about both my son’s journey and ours as a family with deafblindness over the last 18 years.

I recently visited a school for children with special needs. The cohort of children going there are far more disabled than my son and it reminded me again, how lucky we are that despite his deafblindness, he does have some useful vision in one eye and is in good health otherwise. I met so many other children in this school, who were totally deafblind, had serious medical and mobility issues or were unable to walk at all and were locked in their bodies almost. Struggling to communicate with the outside world.

SENSE is involved with a lot of these children and offers advice and support to all their families and to the staff at the school about how best to help these young people have opportunities to communicate with a world outside of themselves. They help with raising money to buy specialist equipment or to create sensory rooms which may help stimulate a young person.The work they do is phenomenal. The money I raise will help them to help others. Have a loook at their link to see where your money will go.

click here to see whre your donation goes!

Most of you send your children to school with the confidence and knowledge that the WILL learn to read and write and with aspirations of them becoming doctors, lawyers, authors, programmers or what ever their little hearts may desire. It is presumed that they will learn the alphabet and how to count. It is taken for granted that much of what they know and understand about the world is just absorbed by them before they have even arrived through the door of their first nursery school.

Take this for example….. When I was heavily pregnant with Middle Child, First Born would have been about 7. Most kids by this age will have absorbed from observation and hearing conversation, the general gist of the birds and the bees and where babies come from and how they need to be looked after. First Born was trying to figure all of this out through observation alone and what I could demonstrate to him through sign and books. Even so, it was still all very confusing for him. He was in the bathtub and pointed at my tummy and stated that there was a baby in there. My boobs of course, at this stage in the pregnancy were much fuller. He pointed and asked me in sign what I had in there. I explained that the milk for the baby was in there. OH! MILK! His face lit up with understanding and he pointed at the other one and remarked that the orange juice must be in that one then?! No…. I explained to him. They both have milk in them. First Born was very confused at this point. Trying to explain to him with my fractured sign language what was going on in the world around him was difficult and incredibly frustrating for him. He looked at the taps on the bath tub and his eyes instantly lit up again…. He pointed at my boobs most excitedly and remarked; Like the taps!!! Hot and cold!!!! Ah…. I could only hug him and treasure how much more simple his life was than everyone elses.

Fortunately for him and my family though, with the vision he has and with the improvement of sign language as he got older, his ability to read and check things out himself, he has a much clearer understanding of how the world works though he still does miss out on things we take for granted. He won’t necessarily hear sounds that may alert us to things and prompt us into looking out for them. He may not hear a car coming down the street at great speed and has to be ever so much more vigilant than you or I do. But even so… he is luckier than some.

I met some wonderful children last week. Desperate to be able to communicate with others and desperate for people to communicate with them as well. I know from experience that sometimes people can be afraid to communicate with my son because they don’t know how to sign and that can be hurtful. Imagine how a child who can’t sign or write might feel? My son is able to grab a pen and paper and write something down for a shop assistant if he needs to. What about the kids who can’t use their hands even?

I came across a wonderful computer at the school I was at. It was attached to the wheelchair of a girl who did have some hearing and vision. She was able to use retina recognition technology to LOOK at the on-screen keyboard or pictures on her screen to send messages to her teachers and carers. Before she had this piece of equipment, she was unable to communicate with anyone around her at all. The computer is programmed for her and her alone. It costs TENS OF THOUSANDS OF POUNDS. But it gives ger some independence. It gives her a VOICE! A voice most parents take for granted because it’s the most natural thing in the world to expect your child to have.

sensory room

I visited the sensory room at the school as well. It was one of the best ones I had ever seen. In the room were children who again, were completely locked into their bodies. But there were mats that they were able to lay on which allowed THEM to change the colours of the lights or the sequence of the flashing based on their body movements. These are HUGE milestones for them. Again, we take these things for granted. Normal milestones like first steps, or walking or talking, first words, matching colours which 99% or the population achieve before they hit a preschool are milestones that some of these kids will never reach. For some of them it’s being able to communicate yes or no by blinking an eye, squeezing a finger or learning that pressing a button has an effect.

This is a most important milestone for kids like these. If they can be taught that pressing a button has an effect, they can learn that pressing the button on their wheelchair will make it go. If the can learn to use two buttons then they are flying. They have opportunities to use specialist equipment to communicate. All of this equipment is so expensive. The training to teach the families and staff to use it is expensive but it offers an individual the chance to be mobile, to communicate and to have CHOICES in what happens to them. Choices in what the want to eat. They are able to say yes or no.

Would you be willing to sit in a chair all day with earplugs in, a blindfold over your eyes and legs and arms strapped down? Would you be willing not to use your voice for a day and have no means of communicating? Will you be willing to be fed whatever you are given with no opportunity to say you don’t like it? To be moved and bathed when you are made to?


Then think about what you could give to help someone not have to live like that and click the link to donate some money towards their cause.

click to donate

click to donate now!!

Happy Birthday First Born!

First Born was lucky. He wanted an iPad for his birthday. With all the apps available on an iPad now, a simple tool like this is a small investment. He can have a voice through apps that speak the words he types, or have a mobile pad to write messages where he goes. It opens up a world of doors for him. Not as many as we would like but still. They are doors and they come cheap compared to the doors that some of the other young people I have been meeting over the years. Every time I see one of them I want to cry. That could have been my son. Help me to help them. Donate a few pounds.


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Posted by on April 28, 2012 in The WALK!


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They’re not dumb…. you are. Have some SENSE!

It seems like yesterday, or not so long ago but how times have changed. First Born has been communicating with me a lot about how attitudes towards the deaf have changed so much in his lifetime, and it is true. They really have, but there’s still so much to be done to raise awareness.

I remember years ago when I was a young girl, there were a couple of families within our extended social circle that had children with “differences”. I never met them though. I think very few did. This was the way back in those days. “Difference” was to be hidden. To be “different” was taboo and was never acknowledged or spoken about.

As times moved on and the education system changed, inclusion became a hot potato and society was forced to deal with having children like these in and amongst them in mainstream schools. I’m so happy that I’m the age that I am and I didn’t have my son in those times. Society’s views were not moving as fast as those of the government or the parents of lesser abled kids or even the children who had these difficulties. Though integrated into mainstream schools, they were still shunned.

I read a book when First Born was still toddling, “The Feel of Silence” by Bonnie Tucker. Tucker grew up in America in the 40s. She lost her hearing at the age of two and was forced to continue to be aural though profoundly deaf. Her parents never let it be known that she had a hearing problem and her mother went to great pains to teach her how to use her voice. It’s a read I highly recommend, even if you have no ties to anyone with hearing loss or other type of “difference”.

Tucker’s book is a funny, witty and intimate memoir of her life. I remember being blown away by how this remarkable woman got through life in a hearing world without support from others as her deafness was unknown to all but her immediate family. Things I was taking for granted like waking in the night when my baby cried to tend to his needs. Tucker had to train herself to wake and check on her babies intermittently through the night.

She had a successful career as a lawyer, married and had children, divorced and continued to raise them on her own. I take my hat off to this woman and give her every credit for her success. As heart warming as her story is however, it’s not a true picture of how the deaf world can be. She lived in a time when “differences” were hidden away. She survived. Not only did she survive. She has an incredible success story.

Sadly though, mainstream society is fooled into thinking that all deaf people can speak. They assume that all deaf people can lip read. Like it’s some sort of compensation from God….. “I’ll take away your hearing but give you the gift of lip reading”.

No no no no no!!!! It doesn’t work like that!

I used to get so fed up of explaining this to people over and over and over again. You can’t just shout louder. You can’t just make a deaf person hear, or talk. It’s like a double edged sword though however. We want society to change and to embrace difference. But how are they meant to embrace it unless they are educated into what that difference entails. As a parent of a deaf person, or for a deaf person it’s probably worse. The incessant questions are tiresome. I say this is tiresome for deaf people but to be honest, it’s tiresome when dealing with any type of “difference”.

Society is in a state of metamorphosis right now. People are open to being educated about difference and to embracing it into everyday lives. We live in a time now where society is ripe for including all levels of ability – physical, mental and emotional – into what will become “normal” one day. A time where we won’t have “disabilities” hidden away or sectioned off into safety zones. We want to aim for a time when we recognise that;


The education of difference must continue.

I can advocate for deafness and some other differences. For instance; I can tell you that how aural a deaf person is depends largely on how profound or small a hearing loss they have, when they lost their hearing. Perhaps they already had speech? More importantly, I can tell you that lip reading is not a given. It is a gift and even then it must be honed and worked on. The same way a person has an artistic skill, they may have a lip reading skill. To an extent yes, it can be learned but really successful lip readers have a gift.

Often I would be asked when I said my son was deaf, “Can he talk?” I would try to explain that because he was so profoundly deaf AND had never heard speech that this was difficult. I would often hear the term “Deaf and Dumb”. This really old fashioned term used to make me so angry. Angry at the person using it, angry on behalf of my son who is in fact one of the most intelligent people I know and I would hear myself screaming inside…


Times have changed though. We hardly hear terms like that at all anymore. The movement for deaf people has been amazing. It’s a hard task to do as an individual though sometimes. For a deaf person I imagine they want to experience life, not continually explain their existence and deafness to everyone. I certainly know as a parent I found it tiresome, wanting to enjoy a day at the park with hearing peers and their children but finding myself having to explain “deaf” rather than just enjoy the day.

This is why organisations like SENSE are amazing. They work to raise awareness in society and clear a path so that the deaf/blind/deafblind may enjoy life; rather than explain it and go into the world without fear of ridicule, questions, even a raised eyebrow or slighted glance and just be themselves.

Please help me to help them continue in their plight to offer the support and advice to the individuals, families and communities of people like my son so that they may enjoy the things in life that we take for granted. Click on the Virgin Giving Money link to sponsor me in my 100km walk on May12/13th 2012 in their honour. If you would like to read more about my family’s story and why I’m doing this walk, please click here.

Spread the word, share these stories and let’s see if we can raise the £3,000 target I;ve set to try and raise. In the meantime….. I’ll keep walking in my efforts to train for this event. (If anyone knows a good masseur who’s willing to meet me at the finish line, I’d be most grateful! 😉 )

P.S. If you think lip reading it that easy, put on a pair of headphones, play your music really loud and try to see if you can interpret what someone is telling you. Also, if you ever do encounter a deaf person, don’t be afraid to try to use gestures, even if you can’t sign. Use facial expressions for sure and if you’re really struggling to communicate, don’t give up; use a pen and piece of paper, or type it out on your phone. All deaf people try to follow some lip patterns as well, regardless of how good they are at lip reading. Don’t shout at them. Speak slower and try to emphasise your lip pattern (WITHOUT patronising them). Keep your lips toward them and don’t block your mouth. Have a look at the video clip in the link below.

The deaf don’t want to be patronised OR ignored.

They just want to be heard too!!!

Thank you again to all of you who have been donating and sending kind words of support. If you can’t help by donating just a pound or two, please help by raising awareness of this challenge by sharing, spreading the word or help by raising awareness on behalf of deaf people by sharing what you may have learned today!!!


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Nothing is making sense anymore!

When I first started this blog just under a year ago, it was meant to be a hilarious diary of the stuff I encounter on a near daily basis whilst I experimented with writing. As it turns out….. it would seem that I have a rather eclectic style of writing. I don’t seem to be able to write in just one fashion. Trouble is, my friends have been on at me to write a book for years now and I can never come up with the story. I don’t have “A” story. I have several. I have been trying to merge all these stories in my head for months now and to come up with a “genre” in which I can pigeon-hole them and today I realised that I can’t. So maybe I don’t have a book to write. Maybe I just have several stories to tell…. hopefully some of them with a moral or best case scenario… maybe I’m sitting on a trilogy of books in my head.

Today I went walking. No easy feat when Toddler Child insists on walking with me…. so I wasn’t exactly doing the power walking for the training regime I wanted to do, but at least I was breaking in the walking shoes. Middle Child has gone off for the week and oddly, this leaves me feeling like there is a bit of a gap to fill, both physically and mentally. First Born also brought up the topic of cochlear implants last night which was quite profound and, over breakfast this morning, he made me watch a very interesting  YouTube video which was even more profound.

On my walk, I started hashing over some of the events of his early life on the back of the whole cochlear implant topic. I asked him outright if he thought it was something he would want now. His response was “No. It’s just good how deaf people are more accepted now”. And it’s true. I remember back when he was a tiny baby, it was rather taboo to be “different”. I don’t like using the word “disability” because it’s never a disability unless you allow it to be. It may make things more challenging, but owning your “difference” can make all the difference. It’s the people and society around you that are disabled!

When I was first letting people know that Josh was deafblind, the first things they would ask is what surgeries he could have to FIX that. Also, in some circumstances they treated him like he was contagious. People would stare, stay on the other side of the room and keep looking at us but not talking to us. I would avoid the mother toddler groups because I was made to feel like we had some kind of contagious disease. One of the most hurtful things I remember was sitting at a family gathering with members of my extended family that I hadn’t seen for a long time who had come to visit from far away and they actually took their ward of kids away as if they would get infected. I was so hurt and upset. But when I look back now with the wisdom I’ve acquired over the years, I’m glad they did this. I’m glad the people who shunned us in one environment or another did so because there was an infection to be had. We weren’t going to infect anyone but I’m glad they did not infect my son with their prejudices and warped outlook on life. We weren’t the ones with the problem…. they all were. My son’s deafness did not need FIXING.

People just need to be more AWARE!!

I thought about Joshua’s early days and all that he went through and we all went through as a family. Often times in those early years of his life, people would pity me and say how sad it was and how sorry they felt for me and him and my family. Thing is though, I had the benefit of being on autopilot then. We were so consumed with hospitals and appointments that there was no time to stop and think about any of it really.

I remember when I was pregnant with him, I sat staring out of my parents’ living room window deep in thought and my father enquired as to what I was thinking. I was worrying about the kind of life I would give him. I was young and didn’t have very much money, but I dreamed of being able to send him to the best schools and being able to give him the best in life and I knew I was in no position to do so. Little did I know, I had much bigger things to consider than what money could buy. We all take it for granted that we’ll bear healthy, happy babies and in those early days in that whirl of hospitals, suddenly the last thing I was worried about was whether I’d be able to buy him the latest toys.

At 3 weeks old, First Born had his first surgery. We nearly lost him owing to his heart murmur. But he came through fighting. By the time he was 2 months old, he had cataract removal surgery in both his eyes and contact lenses were fitted. His prescription then was +42 in both his eyes. The eye that they operated on secondly though had developed a scar in the pupil and was not getting enough light stimulation, and on top of having to ensure he had clean contact lenses that often popped out because they were so thick, he then had to have his “good eye”, the one he could see out of, patched so that the weaker eye would get light stimulation. It was horrific. This tiny baby had been given sight and then had to have it covered with a patch to give his weak eye a fighting chance. On top of all of this, he had to contend with his body-worn hearing aids as well. Twice a day, sometimes more if his lenses fell out, we would have to wrap him up in a blanket really tightly and force his eyes open to put in or take out his lenses. He suffered numerous eye infections, trauma from being wrapped and what I call nothing less than “abused” in the process, and still the appointments rolled in. I’m not sure he ever had a stretch of a week of just normal in that first couple of years. We always had to be in some waiting room for hours somewhere.

The thing is though, so many people felt so sorry for me. People from this outside world that is. In there in the hospitals. That’s a whole different world. I was also introduced to many other different types of mother toddler groups through the hospital and through my Health Visitor. When people said they felt sorry for us, I did not. Behind those walls in the hospitals I met other people. We were lucky compared to them. My baby boy may have been deaf and had some serious sight issues but he was alive and well and at home. I met so many people who were, in fact, confined within those walls because their child was terminally ill or so ill they did not even know when they would be able to bring them home. I met people at groups whose beautiful children were dying slowly though diseases that were going to rob them of a chance of even seeing adolescence. So how on earth could I feel sorry for us? We were blessed. We had life. I didn’t grieve, I was in a better place than them.

Ignorance can be bliss however. It was probably a mistake not to grieve and take it on the chin. Being my first baby, what I had at home was normal for us. We had our own way of communicating and babies don’t talk, so First Born was making all the right noises and I was oblivious to, or had hidden away, the fact that he couldn’t hear me. There was so much else to deal with, the contact lenses, cleaning them, the patches, the physiotherapy and occupational therapy, all the other ways of stimulating him with lights and textures etc. As long as he was making those noises, then I was able to forget about the deafness.

My mother had started taking him to a mother toddler group run by our local deaf centre whilst I was at university. He had been going with her for a few months and was toddling by this stage. If I recall correctly, he would have been about two. She called me and told me of the Christmas party and what time to bring him there and meet her. I went up there and remember clearly walking through the double doors. I expected tinsel and decorations and a Santa Claus and chattering and music. Only, there was no sound. It was a world I’d never seen. I was horrified. I didn’t know if I could cope with this. Just when I thought I’d got to grips with the contact lenses and the patching, a curve ball had been thrown at me.

I was the parent, I was supposed to be bringing my son to this gathering when all of a sudden I realised that I wasn’t bringing him. He was bringing me. He knew everyone. He was in his comfort zone. He ran in and SIGNED at someone and they were all signing back at him. Adults came up to me and were signing furiously at me and I didn’t know what to do. He may have been in his comfort zone but me…. I was completely out of my depth and I looked at my little boy and for the first time in that two years, I realised the reality of his deafness head on.

I went home that evening and I cried. I finally, for the first time, cried for his loss. I was drastically upset but I never told anyone. How could I now after all this time suddenly say it was a problem. Quickly over the coming months as I observed First Born integrating into the deaf world I realised something though. This was his comfort zone.This was his world. He was happy here and the words of a woman form the Department of Sensory Needs who came to see him when he was just a few days old rang though my head.

She appeared on my door step unannounced and said, “I am here to see him”. (Like Jesus).  She barged her way into his room  when I told her he was asleep and she stood there looking at him… Honestly… it was like a little Messiah was born when he came into the world. I had to quickly ask her to leave though. She stood there and then turned to me, looked me right in the eye and she said, “He’s not yours you know. You’re just borrowing him. He belongs to the deaf world”.

WHAT? WHAT? What was this woman telling me about my days-old baby? What on earth did she mean he wasn’t mine? Of course he was bloody well mine. I felt so threatened. Like she was going to run away with him and give him to the deaf. I think subconsciously this may have even been why I blocked out his deafness in those early days. In retrospect, as insensitive as she was about saying this, I realised, for the first time at that Christmas party at the local deaf centre, that he did belong to them. Over the years it has become clearer and clearer to me that there is a divide between the deaf and hearing world and though we are all of one family, my son and the rest of my family are of different worlds.

Hence why of course, I gulped a bit when he brought up Cochlear Implants with me and I had to check if he wanted one. We had the choice of letting him have one when he was two and we declined on his behalf. It has always haunted me that he might say we made the wrong choice for him. So last night I was relieved when he said that he was, “impressed with everything as now that society acknowledge of us deaf people, giving us a support all we needs”.

This is the video he brought to show me over breakfast this morning. It impressed me even more. It does remind me though, that the collision between the deaf and hearing world is almost non existent to me now after all these years. To those who have no need to be around the deaf regularly, there is a huge divide… and for the deaf who live in this hearing world, they feel the divide too… but it’s nice to know that with the help of organisations like SENSE making society more deaf/deafblind/blind aware, less inhibited and more accommodating, that people like my son feel more accepted in this world we live in.

I haven’t touched much on my son’s sight problems in this blog post as it is his less profound loss compared to his hearing. However, he’s considered legally blind. We’re lucky though, he operates at a level that would make most people think that he just wears really thick glasses. There are so many other people out there that have a loss of sight as well and can’t use sign language the way he does and depend on other means of communication like touch. This takes so much more skill to teach and learn, and funding is needed to help people who communicate in this way as well as to help them with the day to day tasks they undertake.

I refer back to the reasons for these recent postings which is to make society more aware of the deafblind like my son and the 100km walk I’ll be doing on May 12/13th to raise money for SENSE, the deafblind charity who have helped my son and others who have much more profound losses than he does.

Please click on my Virgin Money Giving link to pledge even just a few pounds so that I may raise money in order that SENSE may keep helping people like First Born and continue to give, not only them but their families, the support that they need. Organisations like this offer practical, emotional and sometimes even financial support to families who, without them, may not be able to cope or give their child or family member the best help or support they can. They have been an invaluable resource to us, please help them to keep being an invaluable resource to others as well.

To those of you who are following this story, thank you. And a big thank you to those of you who have been pledging money and sending kind words of support and encouragement.

I only walked a few miles today to “ease myself into my training programme” and I’m EXHAUSTED. Your words of encouragement and donations will be what keeps my legs moving when I take off on what I hope will be a warm and sunny morning!

Night night x

As a footnote, I just wanted to add that, as First Born developed his relationship with the deaf world, my wounds of his deafness hitting me healed quickly. I didn’t feel sorry for myself before, I felt sorry for him. In that instant, at that Christmas Party and for a few months afterwards, I did feel sorry for myself. But I stopped feeling sorry for him and for me because, when I looked at him with his deaf peers, I realised that neither he nor any of them felt sorry for themselves and if this little boy who had been thrown a bag of lemons didn’t feel sorry for himself, why should I feel sorry for me? That was not my right! He gave me the strength to carry on.

Also, if you have no idea how the deaf and hearing world can collide and the impact it can have on a family or a deaf person, the whole reason this conversation came up with my son was because we were discussing a TV series which came out recently about a couple of girls switched at birth. One of the girls is deaf and grew up in a deaf friendly environment and is then thrown into a world with no experience of hearing loss. It is very interesting to watch from the perspective of gaining insight into how the two worlds can collide. Have a watch if you can!!


Posted by on March 19, 2012 in March 2012, The WALK!


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