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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!!!

I RAISED A CHILD TO ADULTHOOD WITHOUT KILLING HIM!!!!

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?

THINK ABOUT THAT

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.

AGAIN, THANK YOU TO EVERYONE WHO IS FOLLOWING, READING, SHARING AND DONATING. PLEASE KEEP SPREADING THE WORD. EVERY PENNY COUNTS AND I HAVE BEEN VERY LAPSED IN MY FUNDRAISING EFFORTS RECENTLY!!!! STILL HAVE A LONG WAY TO GO TO REACH MY TARGET AND I’M DOING THE WALK ALL ON MY OWN NOW!!!!

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Posted by on April 28, 2012 in The WALK!

 

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The Baggage List


Today I received the baggage list for what I will need with me on my walk of death. I have been a bit worried about this over the last few days and worried about how I will hydrate and nourish myself over the 100km. For the most part it is off road and there won’t be a McDonalds in sight. Not only won’t there be a hamburger around, but there will be no water source either. Bearing in mind I will start walking at 7 a.m. on the 12th May and I won’t finish till about noon on the 13th, I figure I am going to need some sort of replenishment, even if only of the caffeine variety to get me through the night.

ImageRecently a friend of mine told me I had to ensure my back pack was filled with bananas because I would need the potassium to stop myself from cramping. Now bananas are heavy items and I figure that will hold me back so I am going to have to find potassium in the pill variety! Light and easy to carry.

ImageI have been walking for hours every day despite the fact that I am either carrying or pushing about 35k in extra weight in the form of Toddler Child. I figured that though this was weighing me down, it would be great training and would make the walk of death less fatal. This training has however already started killing me. For starters, I am falling asleep by about 8 p.m. most nights, I can feel my muscles burning. My core muscles in particular are clearly strengthening up. Why is it though that getting fit which is supposed to be a good thing hurts so much? My fluid intake has increased phenomenally. I think I am now drinking about 6 litres of fluid a day. I wake in the morning and I am STARVING….. My eating habits are completely out of whack. I used to be a grazer. I’m so exhausted at night though, I’m not munching my calories in the evening, I’m falling asleep over my dinner plate! My portions have increased and I am generally eating like a horse. All I can hope for however is that I will have the legs of an eighteen year old racehorse by the time I am finished all this exercising and training!

I was fortunate enough to have a local business sponsor the servicing of my bicycle and I am so thankful to them for this. This will make it easier to “train”. Though cycling is not the same as walking, it’s an easier form of exercise to get fit with Toddler Child literally in tow behind me. I can actually get some proper pace in.

Coming back to the baggage though. That back pack I was worried about. I have become increasingly worried as I have been wondering now more about the fluid intake than McDonalds. How on earth am I going to carry all this water I have been drinking and will need on my walk? Will I pass out from dehydration between stops? So maybe carting 35k of Toddler hasn’t been to my advantage at all but exactly what I will need? I got the official email stating what I will need in my pack. Sounds like it will weigh about the same as a small child.

 

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ImageTheir list included not just water and food which I already knew was going to be heavy enough but a whole change of clothes, spare shoes, bandages, sunblock, hats, clothes for layering and warmth in the night, a whole first aid kit with bandage care and antihistamine for bug bites and nettle rashes, head torch and hand torch for night walking…. might I point out that spare batteries needed as well and last time I checked…. they’re not light! Will also need wet wipes and disposal bags to keep the used ones on me in appreciation of the environment for my toileting needs. Crikey… the list goes on and on…..

So the way I look at it… I might not be at an advantage doing all this training pushing Toddler Child around but perhaps what I actually need to do is borrow her push chair and take it with me. Might be better to push than to carry right?!

The sponsorship has been coming in nicely and I am so appreciative to all of you who have been sending funds, kind words of support and who have been cheering me on. Please continue to spread the word and encourage others to donate/sponsor. Please use the Virgin Money Giving Link to send funds directly to my chosen charity SENSE who do amazing work for the deafblind and their families.

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Posted by on March 31, 2012 in Uncategorized

 

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Time for some (not so) SENSEless humour!!!


You know, sometimes you can have the best intentions but things just always have a habit of getting in the way. Like when you make New Year’s resolutions…… you have all these plans for exercise regimes, less drinking, quitting smoking, starting something new and healthy, a diet maybe…. but there is always some VERY GOOD reason why these plans never come to fruition.

Well that’s what’s been happening with me and my training regime. I had all these great plans last week to up the ante on my training regime for my 100km walk of death. I was going to be walking across the hills and spending hours and hours fresh air being at one with nature, getting my little legs prepared for 24 hours of gruelling non stop walking when the fire happened….. yes…. you heard me…

FIRE!!!!

I have been walking everywhere as much as I can. The car has been ditched and wherever possible I am walking. I wouldn’t say training because there is only so fast one can go with a toddler in tow. First Born even got in touch with me and told me he was so touched by the tribute to walk 100km in commemoration of his impending 18th birthday and in aid of the charity SENSE who do some fantastic work for deafblind people and their families.

However, he quickly texted me after walking to his English tutor, a grand 1 mile and 20 minutes later, and said that perhaps it would be too much but he was willing to take his Toddler sister Child to the park and play on the swings with her whilst I did power circles of the park.

Read our walk story here!

This did bring me some sense of relief as I have to admit, I was imagining the scenario that would ensue if he even managed walking from morning into night fall and then freaked out. We would probably be in the middle of nowhere in the country side, not a road in sight, darkness would be upon us and we would be struggling even to have an argument about how I would get him home for lack of being able to see each others hands!!! So we planned a trip to the park.

I packed up the picnic and got us all dressed, walking shoes and all. Yep! I’m still breaking them in, I wear them every day. They are what I can only describe as my new “signature accessory”…. I tell you, my signature has somewhat deteriorated these days!!!

Anyways, there I am… about to leave the house and as FATE would have it, the phone rang. Now when I say “fate”, I don’t use that term loosely in this scenario. This was a proper INTERVENTION from the divine… or maybe it was SENSE coming to our rescue once again. They called to talk through a few things for a press release and I got tied up on the phone with them for about 15 minutes. When the call finished, I went into the living room and announced our timely departure when I smelled smoke.

YES …… SMOKE!!!!! I looked around and could see no smoke. I asked my friend who had been waiting if they could smell smoke?Had they created any smoke at all whilst I was on the phone? We both smelled it. My senses were not fooling me. We quickly went into the kitchen to find the source……

NOTHING….

Like fools we opened my kitchen window and climbed up to have a look outside to find the source…. were one of the other apartments on fire? Were we both being fooled by our noses? Finding nothing, I decided we were leaving and turned into the hallway where I discovered nothing but smoke billowing down the hallway. I went running into the bedroom and there it was……. My expensive John Lewis curtains were going down in a blaze of glory!

Toddler Child had climbed into my window where a lamp resides. You know those ones on a flexible hose like thing? She only turned the bloody thing on, pulled the curtains and  left when I had called for us to go to the park the first time! The flipping curtains had been so super heated by the bulb that they caught fire! My friend and I wrestled to pull it off the curtain pole. Why in God’s name I had secured it so well to the pole was now a mystery to me. And how on earth the children manage to pull the curtains or rails off the walls so effortlessly when I want them to stay up was also a mystery. Here I found myself struggling with this burning mess that wouldn’t budge. Of course we threw that thing in the bathtub so fast and doused it with water thereby creating even more smoke!!!!

Windows were flung open, doors pushed open, fans brought out. My friend and I were choking for breath and trying to air out my apartment with tears from smoke irritation running down our faces. Meanwhile Toddler Child walking around with shrugged shoulders repeating;

“Oh no….. my house on fire….. smokey smokey”

YES IT’S FLIPPING SMOKEY!

read about the great work sense do!

Needless to say, she now knows not to turn on the lamps anymore and the super power training regime went out the window that day as we spent the afternoon clearing smoke out the house and ash from all over the floors! However….. Tomorrow, my walking partner and I will be walking with all of the toddlers and we will be walking for hours and hours. Admittedly yes, we may have to stop for ice cream…. for the kids of course… but there will be training being done.

Coming back to my point about “FATE” however…… if it weren’t for SENSE calling me there and then, I would have left that house and the curtains would have burned to the floor and ceiling, probably ignited the rest of the apartment and the whole thing would have gone down in flames!

click here to sponsor me

Ironically, I noticed that the hole the fire left in my beloved window dressing was heart shaped…… funny that!!!! Just like my Virgin Money Giving Page! I figure it’s a sign! The sponsors and Donors have been rolling in nicely. Thank you all. Please keep sharing our story and the reason we are rallying for sponsorship. Will let you know how tomorrow’s walk goes!!!

P.S. I understand that if you are donating from outside of the UK that paypal might be the best option.

 
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Posted by on March 27, 2012 in March 2012, 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;

EVERYONE IS ABLE BUT DIFFERENT IN THEIR ABILITY. 

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…

“HE’S DEAF, NOT STUPID!”

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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