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.