Welcome to Raffy's Trust.org!

This is our little boy Raffy, as you can see he is drop dead gorgeous but he has some very serious difficulties in life.
Please take a few minutes to read the info and have a browse of the Son-Rise® link.
Thanks, Bri & Ruth

Thursday 30 June 2011

Lots of Raffy news!

It's very exciting here as we have had a mini tsunami of interest for volunteering on Raffy's Son-Rise Program! It's fantastic how news of what we are doing here is spreading in such a positive way. I love the fact that people are thinking about our boy and his progress. Many thanks to Phoebe for being a part of Raffy's journey and starting some of those waves!

The social evening at St Gregory's was a great success and my Mum raised over £600 from the ticket sales and donations! My poor Mum was physically exhausted after organising everything and afterwards was very poorly. She deserves all the blessings in the universe as she has given so much for her grandson. I can't express enough gratitude for all she has done. It was a good night and thank you to everyone who helped (especially to my brilliant Dad and the wonderful Brenda). Thank you to the people who actively came and participated in the social evening. We are so appreciative of all this help. We are getting further and further with our fundraising efforts.

Raffy is always going the extra distance and putting so much effort in to achieving all we ask of him day after day. I am so proud of him. There are huge obstacles he faces every day. His sensory issues and fears around drinking and fluid, communication, his mobility, noise, people, tactile sensitivities, visual perceptions - all these challenges and more. Every day we ask him for more language, more eye contact, more flexibility, longer attention span in the most fun and exciting way we know! He tries and tries and tries... how amazing?! And gradually we are seeing core change.

We are seeing more impish humour emerging and a strong creative imagination. His increased confidence and developing verbal skills mean he is wanting to and able to express his personality. As I said, it's an exciting time here!

We are carrying on with Raffy's home-based, parent-led, Son-Rise Program during the next academic year. We found a nice small local school and considered sending him there with support. However school is not designed to nurture social skills & emerging eye contact. I can't envisage any issues with reading, writing or numeracy. Raffy's challenges are social and sensory and the fact is that school will not be able to help him progress in these areas. In reality it will be a different alien environment with loud noises, unpredictable small humans, adults with a more rigid agenda, a cacophony of input to process. Unfortunately it seems that most professionals are still under the misguided apprehension that social skills will magically rub off in a school setting. If this was so we would not be seeing so many ASC children having problems and needing intervention. It is exhilarating to know we are on the right track!

Raffy is still very interested in ladybirds and asked me to take his photograph in his new pyjamas last week. Here is the resulting picture. Enjoy!