Apologies….. I fell off the grid!

28 Apr

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.

click for details

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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