Sians Story. By Susan - my sister - my drive

SIAN


This is Sian my beautiful, happy, loving 14 year old daughter.
Sian has full mutation Fragile X Syndrome she has severe learning difficulties and Autistic Spectrum Disorder. I have found this hard to come to terms with as I know girls are usually affected less severely, although I realise this must come with its own set of difficulties.
I love the article ‘Welcome to Holland’ by Emily Perl that Simon has already included in the blog. For me it sums up the pleasure and pain of having a child with a disability. It also expresses how lucky I have been in all the people who have come into my life because of Sian.
I began to worry about Sian’s development when she was about 30 months old. By the age of 3 1/2 she had been diagnosed with Fragile X Syndrome. I realise now that we were lucky to get such a quick diagnosis. We were seen by a brilliant Community Paediatrician who was aware of Fragile X Syndrome and told me to insist on her being tested for this when she was seen at our local hospital.
When Sian was 5 we were very fortunate to be funded by our local LEA to teach her at home on a Lovaas programme. This is a language based behaviour modification programme. “If a child can’t learn in the way we teach, we must teach in a way the child can learn” [O Ivar Lovaas]. If you want to know more about this you can contact Peach (Parents for the Early Intervention of Autism in Children) at http://www.peach.org.uk/. Please don’t be put off by the word Autism. These methods can be used with children or adults with all types of learning disability. Sian was on the programme for 5 ½ years. We employed a team of six therapists – who have become close family friends and, without wanting to sound clichéd, gave us our child back. I am convinced that without the programme she would never have been able to access the wonderful school placement she has at the moment. She gained an attention span, confidence and an interest in the world around her, although this is still, and I think will remain only on her terms.
Sian is now in her fourth year at a wonderful school. I love her school because they have a holistic child centred approach to education. They have continued to build on the work started by her therapists on the Lovaas Programme and she is making steady progress. Sian’s teacher, has kindly put fingers to keyboard to explain what it is like for him to have her in his class.
“When I first took Sian in September last year I was a little nonplussed as to how I would meet her needs and as to what progress I could expect or hope to make. She was the first pupil I had encountered who showed no desire to communicate with the others around her. If left to her own devices she would spend the whole day looking at picture books and magazines. She would look at them flicking fervently back and forth through the pages and licking the pictures she liked, thereby ruining for others many of the books she came in contact with.
Her communication was very basic and her targets at the time were for her to communicate using Picture Exchange Communication System (PECS) symbols. I noticed however that she did have a certain amount of speech and decided to try and encourage that. I started out by insisting that she said good morning and worked from there. She can say it quite well but will tend to mumble it incoherently. When spoken to firmly she will use it quite clearly. Her mother told me that she is more capable than you would think from observing her and that she hides her own capabilities. I agree with this as she often achieves things quickly when offered books as a reward. Although she doesn't speak willingly, her speech has improved and her targets are now related to oral communication rather than speech production.
Sian's relationships with the other members of the class were minimal with both staff and peers. She knew another girl in the class from activities outside the school and they would occasionally put their heads together and look each other in the eye. I started to try this with her and she has progressed to the point where she now has moments of being very affectionate with the staff in her class. She will suddenly, almost desperately, ask for a tickle or a squeeze and once this has been given, she will just as suddenly turn off. I believe this to be very good progress as previously she would only do this with her family.
Although it is a challenge, I have enjoyed working with Sian and I am pleased with the progress she has made. I was surprised when I discovered she could recognise her own name in print and I think it remains to be seen exactly what she is capable of.
Finally, it has taken many years but I have come to terms with Sian’s disability. I don’t think this is a gift from God but I feel it is meant to be. Sian has a brother Tom who is 13 and for me he summed everything up when he said “I wouldn’t want Sian to not have Fragile X because she wouldn’t be Sian.”

Snowflakes - a lonely office - Homage & Thanks

Its just turned April. The clocks have moved an hour forward. The urban birds are back, singing the South London neighborhoods awake on mild mornings and it’s snowing! Not just snowing, but chunking it down! I have just lost an hour standing at my deserted office, reception post, doing my Sunday security job, with my face pressed up against the large windows under a noisy heater, grinning, like a kid longing to get out and dive into the inevitable snowball wars with the neighbors kids. Mind you it doesn’t seem to be settling. The huge flakes are windlessly, wandering down from the sky and dissolving on impact leaving nothing but wet, with no white. Standing there has set my mind wandering. I cant help feeling amazed at how people cope with their lives when they have disabled children that become disabled adults. The hardships they deal with 24hours a day. The optimism they think, feel and show i only hope rubs off to the rest of us out there leading the usual life. My sister Susan has said to me with a reassuring smile "this is my life now". Out of that brutal realization comes the iron built optimism i mention. As well as undefeatable strength. That in itself has inspired me to ride into the magic and mayhem that the road from prudhoe to ushuaia will be. Where does that courage come from? When parents, like Susan and Ian, my brother in law, notice that their own kids will never be the same as the kids, having snowball wars, dancing around in the school playground or down the high street with their mates chatting and laughing as young kids do, in that regular, unsolitary daily existence. “this is my life now”, WOW ! Unbelievable! I want that level of spirit! . Thank the universe also for those single-minded researchers and society workers, who strive for knowledge and results to aid the families affected with syndromes such as Fragile X. I recently read an article, which Magdalena kindly sent me, saying that researchers funded by FRAXA have discovered that a drug used to treat afflictions, such as acne and lyme disease, might be able to reduce anxiety & behavioral problems in people with fragile X. Tests start this spring. Fingers crossed on that then ! For in-depth understanding visit the FRAXA.org site and click on research.

Publicity has been growing for the FXPedition of late. Nite Watches, who run an anything is possible initiative, have taken me on board, with great interest. They have been doing publicity for me, which lead to a Television interview on Nuts TV. A great confidence boosting experience for me on a personal level , which I enjoyed after being apprehensively scared stiff , but followed it through for the cause, which can only help the spread of awareness of Fragile X. Nite watches have created a range of essential out door activity watches, which are proven to be robust and unique at a very reasonable price. If you are involved with the great outdoors, or even just clumsy with a habit of smashing watches, I strongly recommend a look at their range and a read of the interesting gaseous inventions of their watch mechanics. Dave Gurman, the editor of Riders Digest kindly wrote a fantastic article on the FXPedition, getting right to the point in an honest, real way, which isn’t surprising really to anyone who knows the riders digest. I have to be honest and say that Dave’s magazine, which is free by the way, gets to the heart of matters bikes and beyond in ways the glossy pay for mags just cant find. A unique, earthy read ! a pleasure & an education ! I must mention also, after loads of research and past experiences I was having trouble finding the right kit, as in bike clothing for the trip, to get. In the end I found Hideout leathers, out there in darkest Essex. Thinking that normally sellers just want a sale and I wont get any help really I only went along because they seemed to have a wide selection of race and touring gear. I was wonderfully surprised to find Kate & Sandra working in what seemed like a small farmyard barn, stacked out with all the right stuff and willing to get stuck in with all the help and advice I needed, comparing all different styles for all climates & even making a phone call to a Dakar racing acquaintance for advice for me, which lead to me finding what looks like the right choice of gear ! . I want to Thank Magdalena “Maggie” Mayo also , for helping me loads, in making contact with People in Latin America, her input to the Blog and also giving me the kick in the rear that I needed to get a bit more organised ! .. Donations have been slowing up recently, but with all the publicity bubbling up the awareness importantly is getting out there! Thank you again and again to everyone who has donated so far. Remember if you are considering donating, bare in mind please that your donation IS going straight to the Fragile X Society and not slipping into my wallet.

International day of disability – Puerto Madryn - Argentina. Introduction by Magdalena

The following short Film shows my aunt, Cristina Camarasa speaking about an exhibition set for the International Day of Disability in Puerto Madryn. The exhibition was set up to show a group of young disabled adults and the work they do, outside the institutions set up to help disabled people. For example there is artwork produced by disabled people as well as a photography exhibition showing pictures of others playing sports. The intention of the exhibition is to inform society that young disabled people are also capable of doing everyday things and that friends, family and society need to support, encourage and give them the freedom they need to achieve their goals.
Hace click en el siguiente enlace para ver a mi tía hablar sobre una exposición de fotografía en Puerto Madryn para el día internacional de la discapacidad, mostrando las cosas que hace la gente con discapacidad como ser deportes y arte.

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Magdalena - Historia

My story/ Mi Historia

Me entere del viaje de Simon mientras visitaba a mis primos en Puerto Madryn, Argentina. Yo vivo y trabajo en Londres hace 17 años y visito Argentina cuando es posible a visitar a mi familia. Mi tía me contó que un chico ingles planeaba un viaje por América para recaudar fondos para la sociedad X frágil de Inglaterra y buscaba contactos en América Latina. Inmediatamente me intereso el proyecto porque yo tengo dos primos que son X frágil y conozco como afecta este síndrome a la familia y la poca ayuda y conocimiento que hay sobre esta discapacidad. Así fue como me decidí a encontrarme con Simon en mi regreso a Londres para ofrecerle mi ayuda en lo que fuera necesario.
Como tengo un poco de conocimiento sobre los medios de publicidad le sugerí a Simon que esto debería ser su prioridad para que el viaje sea un éxito. Simon esta recaudando fondos para la sociedad X frágil de Inglaterra pero hemos decidido que durante su viaje lo más importante es concientisar a la mayor cantidad de gente posible sobre lo que es el síndrome X. El Síndrome X Frágil es la causa genética más común de deterioro mental, pero a pesar que ha sido identificado en todo el mundo, se estima que el 90% de los individuos que lo padece aun no ha sido diagnosticado. Por esta razón Simon se concentrara en difundir información sobre el síndrome y las sociedades y organizaciones donde personas afectadas pueden buscar apoyo. No existen organizaciones o sociedades en todos los países de América pero esperamos poder poner personas en contacto con si mismas para apoyarse y en los casos que se pueda, crear organizaciones de apoyo e información. Por esta razón si usted conoce de personas u organizaciones que quisieran cooperar con el proyecto, de difundir información y crear publicidad durante el viaje de Simon por favor contáctese con nosotros. Todavía estamos buscando contactos en México, Guatemala, Honduras, Nicaragua, Costa Rica, Panamá, Colombia, Ecuador y Bolivia. Realmente deseo que todos podamos hacer nuestro pedacito para poder apoyar, ayudar, informar y concienciar a la mayor cantidad de personas posibles y crear un movimiento positivo global.

Magdalena Mayo
Maggie_mayo@hotmail.com

I found out about Simon’s xpedition while I was visiting my cousins in Puerto Madryn, Argentina. I have lived and worked in London for the last 17 years but I try to go back to Argentina as much as possible to visit my family. I was immediately drawn to Simon’s project because both my cousins suffer from Fragile X and I know first hand how this disability affect my family as well as the lack of support groups and information there is about this disability. This is how on my return to London I got in touch with Simon and offered him my help. We got together and I shared our experiences of the disability and talked about how best to take his idea forward. We agreed that publicity is the most important thing to achieve, not just for the xpedition but also to spread as much information as possible about the fragile X syndrome. Few people know that Fragile X Syndrome is the most common inherited cause of mental disability and it is often wrongly diagnosed as autism. Despite this there are very few organisations or societies offering support to families affected by fragile X, particularly in Latin America. We hope that Simon’s xpedition brings people affected by fragile X together and that it creates enough publicity to spread the word about what this disability is about and how it affects people. We are still looking for contacts in Mexico, Guatemala, Honduras, Nicaragua, Costa Rica, Panama, Colombia, Ecuador and Bolivia who Simon is able to visit. If you are interested in this project or know someone affected by Fragile X, please send us an email or donate using the link on the right.

Intermidiate ramblings

Most people have in their memories, images of Shackleton`s ship The Endurance, wedged in the jaws of Antarctic ice or Hilary and Tensin`s grinning, burnt complexions descending in triumph, but what about names like Carl Stevens Clancy, stanley Glanfield, Avis & Effie Hotchkiss, or Ted Simon, Dan Walsh. These names, with images of bent handlebars buried in deserts, rusty paint cracked panniers smothering machines and ancient brown bomber jackets are only wedged in the memories and research of motorcycle obsessed minorities. They deserve their names & stories stuck in the vaults of hero`s. Forerunners in the world of " Adventure Motorcycling" without whom i doubt i personally would`ve had the belly to do this FXPedition. It looks like the first round the world by motorcycle was in 1913. Carl Stevens Clancy, an American, rode his Henderson motorcycle 19,000 miles though Europe, North Africa, Asia, Japan, west coast States onto East coast States. (a similar henderson in the photo)



This must have been pure endurance and a great advertisment for the Henderson company, proving the machines ruggedness and reliability. Imagine it though, feeling every internal organ shaking pot hole, on terribly maintained roads (if there was any maintenance), no machanics in every town, hardly any fuel stops and basic clothing unsuited for the ever changing climate. These Bikes were not fast either, you couldn`t just blast out parts of the route at an average 80mph. There is some history of a mother and daughter team, Avis and Effie Hotchkiss riding their sidecar outfit the whole length of the States, undirectly covering 5000miles, in 1915, how they must have been looked at with judgmental eyes. We jump to 1928 now. Stanley Glanfield devoured 18,000 miles and 4 continents in just 8 months. He was riding a Rudge Whitworth combination, with a "wapping great" 3.5 horse powered single cylinder motor. How did the locals in the far Mesopotamian mountains see and behold a grumbling, rumbling sidecar outfit with a wide eyed lonely Englishman, "what - oh"-ing it up & grinning at them ??. Not long after this Mad Dogman, along rode Another Young North American. Robert Edison Fulton Jr. 1932 to be exact. He rode a huge 40,000 miles in 18 months on a Douglas T6 twin, which going by a rare photograph ( i can`t show) started to actually take the appearance of a modern bike and not look like a victorian Hobby horse. By this time it looks like they had started to get to grips with the bike travel stuff, because the bike was modified with a larger fuel tank, room for his luggage, including a movie camera and 14,000 feet of film, also enough space for clothing and a sneaky place for his gun (wonder if he used it ?). In later years the bike travel bug spread, bikes became more accesible to the average person, like everything else and the stories were spreading, which inspired people to bite the bullet and get out there. Elspeth Beard, a fearless young English woman of 24 years went out to eat up 48,000 miles on a BMW. Then of course you have Ted Simon, who in the early seventies took his triumph out there for 4 years, subsequently writing the book Jupiters Travels, an honest, exciting, insighful coverage of his adventures. A book loved by all , including anti- motorcycling, couch lords. Then theres Dan Walsh. A riding writer, lost in the wilds, that appears in the UK`s BIKE magazine, from time to time. A definate inspiration, finding comical, sometimes dark and insightful situations. I think most of us search Bike mag every month hoping that Dan has managed to fill some pages with that colourful, rich & dangerous prose of his. Unlike a lot of adventurers these handful of characters went in search of stuff other than glory, that i am sure of, which makes my hat go out further to them. My hat comes off again to go out to all the invisble ones who over the years and now, also ride across, war torn lands, beauracratic walls, dangerous jungles, over populated unknown cities and general life threaten situations everyday in search of something other than the usual mundane nothingness. What is it about motorcycling that gets in the blood forever ?

There is definatly a strong bond amongst motorcyclist, no matter what kind of riding they are involved in, whether its blasting around as fast as possible, lording it up outside the local cafe or riding as far as possible chasing something inside, we all make time for each other and instantly become more than aquaintances, listening easily to each of our stories. I learnt of this bond when i was 16, bone shaking around on a Yamaha FSIE 50cc rascal, which had a habit of falling apart each time i parked up somewhere. On a winters night my little FSIE decided to fall apart once more, which left me with my head in my hands screaming obsenities at a broken gear lever, when a loud bass rumbling machine came up the street (a washed out kawasaki Z1000, carrying two oil faced, older than me urchins, with tattoed cobwebs on their necks. I thought this was my time to die, until these gentlemen spent half an hour out of their precious terrorising to help me out & fix the bike until i could ride off once more. Some say its the freedom a bike brings, some say it clears a cluttered mind, some say its as close to being part of the earth around them, feeling the temperature drop in the woods, then feeling the sunshine the other side. A famous quote : "Driving a car is like watching a film, but riding a bike is like being in a film". I do know that during a long ride the mind goes to other places, sometimes shockingly profound places that gets forgotten that night around the dinner table. The risks are massive, and we all know this. Maybe thats where the bond is. Knowing the risks brings an acute sense and vision of things. Reading the road and expecting the worse. Knowing what that nut case in the rickerty truck, with the family of pigs on the roof is going to head straight for you expecting you to ride off the road out of HIS way. Everything and all of it is Fun, even when your buttocks are killing you and the Darker than usual storm is following you everywhere until you are soaked beyond the bone. On top of this i think that riding into everywhere on my trip will get me noticed more so than any other means of transport, which will get the message of Fragile X out there on a wider scope. Down sides to Motorcycle travel ? There isn`t any !


A date is settled. I leave the fluffy safety of England on 3rd August. (Lee, you know it makes sense !)

The necessary hero - The bike

There has never been any doubt in my mind as to which motorcycle would take me through this adventure, even when confidence and imagation took over and i dreamt of riding the route on something ridiculous like a pink 50cc monkey bike or C90 pizza step through. Or even doing a Nick Sanders and chase the horizon on an R1, But i`ll leave those fruit cake dreams to the really, really adventurous, for now anyway...The Kawasaki KLR650. A cult classic dual-sport machine. A bike the massive Japanese manufacturer hasn`t altered, as their rivals where altering their machines year after year. The Kwak has stayed the same, maybe a few stickers here and there, since the mid eighties upto last year. It seems like that wasnt a wrong move, as the KLR has been right up there in sales to the adventurous North American global munching motorcycle adventurers, commuters, local trail riders, beginners and general bike lovers, state side. But over here on our little Island the KLR has been sitting despondent in the shadows of all other species of bikes. I think we love our silly accleration and top end madness to much and without to much legal off road availability, the Kwak has no hope here. I have only seen one in the past year, parked up in the car park of the sinister white swan pub in Stepney (wonder what his story is ?). The bike is no high performance motocrosser, or quick off the lights fireblade humiliator, like some KTM`s have been known to be. Its built to eat miles on all sorts of terrain, even though its a mass produced machine, which the japanese are known to mass produce using cheaper materials. If the US marine corp use them, with only a few modifications (including a diesel conversion, done for logistical reasons) it must be a monster for high mileage and rough treatment. A heart beat 651cc, watercooled calmly vibing single cylinder, weighing in at around 155 kilos, humble horsepower, with a grunty low-mid range, fed by a 40mm carb, this bike is a basic as they come, which to me says : low running costs, enough grunt to get out of panic spots, accessible parts in obscure places and simple maintenance (mind you i could be very wrong as i am not mechanicaly minded, without lots of effort). The fuel tank holds around 6.1 US gallons, that i remember let me squeeze around 250-ish miles from. Its a tall bike, that i have to prepare myself for when mounting, instead of just jumping on, but once up there in the clouds feel absolutly at home on, it fits. On dirt i havent found the height a problem. I have used a lower BMW F650 also and didnt find my basic off road skills any different from that of riding the KLR..... There a few obvious other choices of adventure bikes out there, like the humungous Beamers and the gorgeous KTM adventure series, but these bikes cost an arm and a leg to initialy buy, so they are out of the question for me, let alone they are just to show offy and to much to handle on the dirt for myself. I owned a Yamaha XT660X supermoto last year and was very tempted to have a go on the americas with that, (haven`t heard of a supermoto doing the route) but after getting sensible again and seeing its such a cheaper option to buy the bike in the states than to ship my own, the XT was filed away in my mind, shame really coz that was a fun machine.Aprilia, suzuki and even MZ produce dual sports aswell, but after looking into and past experiences, the KLR just gives me no choice..... the wide handle bars give superb leverage when on dirt and on the tarmac, where Counter stearing into the twisties on the KLR is a right grin, even if not at missile speeds. After saying all this, i have to mention that i have never owned a KLR. I have only ridden approximatly 4000 miles around South Africa and Alaska on one, thats where i draw my judgement from. In those miles i have trouble finding any complaints, infact i have non !.... looks of a bike are irrelevant for a trip like this, apart from the fact that discretion is probably a large point, in not showing off on a shiny, brand new, custom sprayed "ive got money" machine ,in those wonderful less fortunate countries. Saying that though, i love the Mad Max, battlefield looks of the KLR, which definatly sits on the lower dirtier end of the Obvious "have money" stick.





The plan is to buy the KLR in Anchorage, Alaska with the help of a good friend, Phil Freeman, who runs the superb Alaska Rider Tours outfit up there. I have ridden with Phil on a number of occasions and completly trust his knowledge, experience and large adventuristc tendancies, which are infectious. He has a legion of bikes including some wise old KLR`s which one of, has my name and rear size written all over it. I cant wait to meet the machine that will take me out there !

MERRY CHRISTMAS EVERYONE ! NAVIDAD ALEGRE !

To all that are reading this and to all families affected by Fragile X. To all those wonderful people working within Fragile X organisations. To all those future friends, who i am going to meet on the road and to all those who have helped me out with the venture, i want to wish you HUGE HUGE heart felt wishes of Major merryness this christmas and i hope 2008 brings you delights unheard of !.... I am working all over the festive season, but will be smiling my head off, willing the new year in, warm with the thoughts of what 2008 will bring on the road from Alaska to Ushuaia..

De aqui en Londres. A todos en America Latina, mi le deseo un Navidad alegre y un prospero ano nuevo !excitado a reunion de usted por mi expedicion en 2008 !