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

Tuesday, 14 December 2010

Lots of Raffy stuff going on...

It's been a long time since I've managed to update Raffy's site. He's doing really well. Today we were doing jigsaw puzzles (9 pieces) together and I'm amazed at how his confidence and fine motor skills are developing. He has a problem with attention span but we did 6 puzzles one after another and he really tried hard. Mind you Eden then shoved all the pieces under the wardrobe while I was putting pyjamas on Raffy... 3 still missing!

Dad was away for 8 days and nights last week... night times were rather challenging with two small humans to put to bed. Raffy did a fair amount of hurling things (books, laundry, wooden toys, trucks, bedding... anything) down the stairs while I was sorting little sis out. Shouting 'Oops a daisy!' and 'It fell over!' and 'A train fell down the stairs!'. Cue lots of very excited giggling and jumping up and down. Needless to say bedtime started at 6pm and generally finished at 10pm or later. It did stretch my sense of humour, but the boy is funny.

We've been publicly criticised for doing a Son-Rise Program with Raffy from the Special Needs Ed 'team' who used to come over to our house and they have withdrawn their support for Raffy with varying excuses. The main criticism was directed at this blog and Raffy's Facebook page which somebody 'anonymously' tipped the team off about. We are 99% sure it was his ex Speech and Language Therapist as she was so negative about the Son-Rise approach. This was back in July. I had two very distressing and intense meetings with her afterwards and was naive enough to think it was all finally sorted out. When she managed to pass our case over to another organisation then the complaint happened. 'Someone' must have been doing Google searches on their own time to find the pages as all on-line content about Raffy only mentions his first name and does not identify his Mum and Dad or location. I have no idea why anyone was offended at the 'posts' as I was so blunt and said far more inflammatory things to peoples faces than anything published on-line!

We've decided to see this as a natural way to get rid of the people in Raphael's life who merely wanted him to conform to a series of standardised tasks. They wanted him to be able to sit still in a classroom setting, we want him to enjoy being with other people and make friends! Quite different targets.

This family has never been very good at conforming... thank God.

Monday, 22 November 2010


We took Eden to get a pair of slippers on Saturday. Much needed as she now puts on her wellies in the morning to escape the cold floor! Raffy walked along the high street to Clarks holding Mum's hand and chatting about the sky and the pavement (usual topics if out of doors!) and being so focussed. It was absolutely lovely. He even pointed out two little girls and when we looked inside a cafe said 'Hya' to two total strangers! We didn't stay in the end, far too crowded even for me but Raffy just coped with everything.

I am so proud of him. Little sis is now talking quite a lot and I think this is an added spur to his own speech. I asked Raffy and Eden to give each other a cuddle last week and it was amazing to see them embrace and kiss on the mouth! Eden loved it, she kisses everything in sight some days!

Raffy did 'This little piggy went to market' on Dad all the way through complete with tickling at the end. He is also much less distressed at having his teeth brushed. Instead of both Mum and Dad having to restrain a struggling, screaming boy, it's now a single parent job with some moaning.
However he is back to hating bath time...

We are now registered to go to the Autism Treatment Centre for 12th - 16th December 2011 for Raffy's Intensive. We have a year to raise £7,000.

Many thanks to everyone who supported the Raffy coffee morning in Lydiate. Over £600 was raised. xxxxxxxxxxxxxxxxx

Sunday, 7 November 2010

Pat's Brilliant coffee morning in Lydiate for Raffy

Thank you so much to everyone who helped, donated and came along to the coffee morning at St Gregory's Church in Lydiate. We really, really appreciate it.
Thank you most of all to my wonderful Mum, who had the idea, then prepared everything, spread the word and worked so hard to make it happen. I know it was a huge effort and that it has been absolutely exhausting. Thank you Mum, we love you. Raffy is doing well and that has been made possible by everyone who has supported us.
The grand total is £510 and it will all go towards Raffy's Intensive week at the Autism Treatment Centre in June 2011. Fantastic!!

Individual thanks you's for donations to:
Auntie Cath, Mary, Kay in Scotland, Margaret Roberts, Vera Parker & family, Les & Alison, Mike Hunter, Alice, Min Wakefield, Andy, Tania, Harriet, Pat Mutch, Gladys, Michael, Derek & Maimie Finney, Irene, Auntie Doris & Bill, Pauline Shaw, Brenda & Ron, my lovely sis Karen, Mike, Tim & Adam, Gilda, Delaneys Coffee Shop, Rose.
Thanks and love to Ronni (Langley) for the use of the Social Centre at St. Gregs.
And to all the talented cake-makers: Brenda, Irene, Judy, Vera and Vera.

Helpers (the muscle) on the day: Sis Karen, Brenda, Ron, Raffy's Grandad, Sue, Dianne, Sophie and Jess.

More love to Brenda and Ron for all the extra help and support. And to Brenda for making such beautiful cards and book marks to sell. Gorgeous!

Flo Jameson won the 'Guess Teddy's Name' game! Well done!
Some of the 'Raffy Raffle' winners:
Mike Hunter, Brenda Ibbs, Stan Breckell, Lorna Baxendale, Sue, Barbara Dale, Geraldine, Mike Ashley, Mrs Lee and others! Phew!


Saturday, 30 October 2010

Weekend with Raffy & coffee morning today!

Head over to St Gregory's Social Club in Lydiate between 10am and 2pm today (30th October) for coffee, tea, cake, chat, raffle and gifts. Pat and Brenda are on hand to pour tea and guide you in the direction of some tasty confectionery!
All proceeds for Raffy's trip to the Autism Treatment Centre in Massachusetts USA next June! I hope you can support us.

Here further south it's just Raffy and his Mum this weekend. It's been lovely so far. Raffy has been chatting more. He actually said, 'Mummy, can I have hummus on my toast?' yesterday morning! This is such a complex sentence for him and calling me Mummy directly is a first!
There's plenty more to come from Raffy.

Monday, 25 October 2010

Coffee Morning and diet change for Mr Raffy!

It's been ages since I updated Raffy's page, many apologies but it's been a busy time. We finally decided to change Raffy's diet and put him on GFCF (Gluten Free Casein Free).
This is a really common thing that parents do with their autistic kids. ASC children tend to suffer with stomach problems - the idea is that the proteins in gluten and casein don't break down properly and can 'leak' out of the gut wall in the form of peptides. These then circulate round the body causing the same sort of effect as morphine on a heroin addict. We've never seen serious stomach problems with Raffy so apart from a few months on dairy and wheat free about a year ago (we saw nutritionist who said we were damaging him... that didn't help) we haven't seriously considered it. However I've been reading more and more about the possible positive effects and I finally persuaded Brian we should try it.

Two days in and Raffy was looking awful, dark black rings under his eyes and terrible redness on his face. However he was sleeping earlier and for about an hour extra. His diet was actually a lot healthier after eradicating gluten, casein, soya - we are making him smoothies with strawberries, bananas, blueberries, flax oil, hemp milk (new one on me - expensive though). He is eating less junk, more hummous, GF toast, sugar free jam... still not a very expansive diet but better. Then he had a forbidden cake on the 4th day. We didn't think it would make any difference really... wow! It did, he was hysterical at bedtime, laughing at nothing, rolling around on the floor until 2am... then awake again just after 5am.. a whole day of totally ga-ga behaviour. Like an addict.

The other positives (apart from improved bedtime) started to show after that - he is definitely chatting more and is slightly more focussed. We are officially amazed and pleased!

I'm not sure when I will be able to post any more pictures as I have become so brilliant at hiding stuff from Raffy that I can't find the charger for my camera! So it's dead and juiceless at the moment... hoping Eden hasn't tidied it away in the bin...

My Mum is having another fab coffee morning this Saturday 30th October at St Gregs Church in Lydiate! Please go and eat cake and raffle for Raffy between 10am and 2pm! xxxxx

Sunday, 10 October 2010

Sweet Psychosis, Cathy, blackboards and more!

It's been a busy week here. We've been painting up a magnetic blackboard (3 coats... 2 down one to go) in Raffy's room. The smell has been horrendous so there's been minimal playroom time and the poor lad has had to sleep downstairs. That has been the plan. He has illustrated his annoyance with prolonged screaming at bedtimes and alot of pushing and pulling especially of Mum. Anyway he has ended up getting in Mum and Dad's bed which has been lovely. But with Raffy there are always rather strict conditions. No covers allowed on him or anywhere near him... plus little sis has been copying. So there have been 3 nights of very uncomfortable lying awake. Small sister also likes to kick her teeny size 4 feet and is most comfortable when she is horizontal and can slam both her legs down hard on the mattress. It's been very eventful. Especially when Raffy's head got in the way at 3am.

Cathy has raised marvellous £400 plus from 'Running to the Beat' on 26th September.
Thanks Cathy, Nick, Felix, Katie & Lara! xxxxxxxx

Josie has launched her blog - a bid to lose 52lb in 52 weeks to raise money for Raffy's treatment!
Please visit her very entertaining website which launches tonight 10th Oct at midnight!
And comments please! Comments are great for helping with morale!

Hint hint! It's very hard to know if anyone is reading so please think about commenting on this site too! Just so we know there are people who care about Raphael and are interested in his journey.

Lou is back on Wednesday so please look out for a new weigh-in.... Really missed Lou last week she was training. It's the only day we get any help with Raffy!

Thanks everyone xxxxxxxxxxx

Saturday, 2 October 2010

Raffy does tiger and volunteer news!

Got a few photos to post up of Raffy! He's loving being a pussycat/lion/tiger these days... Mind you he's more keen on looking in the mirror and experimenting with putting on pretend 'ears' (could be anything from rolls of sticky tape to his toy elephants) than prowling round the room with mum!

We are totally concentrating on the interaction, eye contact, turn taking and general fun in the playroom. It's brilliant that Raffy has started getting interested in writing without any prompting at all! He also knows his numbers up to 100.

Other great news is we have a volunteer starting on Monday... welcome to Liz xxxxxxxx

Wednesday, 29 September 2010

Louise is skinnying up for Raffy... and a hot wedding!

We have a new announcement! The fabulous Louise has decided to pitch in to help with raising the money to take Raphael to The Autism Treatment Centre of America in June 2011.
A nephews wedding in North Cyprus next May has spurred Louise on to shed the pounds, doing it for Raffy may just be the inspiration she needs!

We will be doing a week by week update of how Louise is getting on...

Our girl is bravely hitting the scales and letting us all follow her progress ounce by ounce. This is going to be exciting, inspiring and I hope you will all help her by Donating for Raffy's treatment program.

Louise weighs 92kg (14st 6lb in old money) and would like to shimmy in to the wedding a serious 2st lighter.

Wednesday will now be a Louise day, it's official. Watch this space! xxxxxxxx

Cathy finished 'Run to the Beat' in 2 hours!

Here we are.... a lovely picture of Cathy running for Raphael on Sunday morning. They started later than planned (because of the dreaded public transport issues) at 10.45am... this is Cathy at 11 miles! Looking rather radiant I would say! What a gal...

Thank you to everyone who has donated already, both through the Donate button here on the blog and directly to Cathy xxxxxxxx

Any amount is helpful, if you can use the Donate button you will be contributing to Raffy's continuing progress into the outside world.
We know he just needs the extra help xxxxx

Saturday, 25 September 2010

Cathy is running to the beat tomorrow/today!!

It's late so I'm not sure whether it's Sunday yet...

I hope you can sponsor Cathy who is running miles tomorrow (13 of them!) to raise money so that Raffy can go to The Autism Treatment Centre in June 2011.

Please have a look at the links:



We are running a Son-Rise Program and this Intensive week will be a fantastic boost to Raphael's development and for all of us as a family.

Cathy's half marathon start time is 9.45am at the O2 in London....

Good luck Cathy!!!! We love you!


Tuesday, 21 September 2010

Running, Sponsoring and Volunteering!

We are counting down the days now until Cathy 'Runs to the Beat' on 26th September!


I hope you can support Raffy by sponsoring Cathy and trying out our 'Donate' button on the right!
We are raising £10,000 to take Raphael to the Autism Treatment Centre in the US in June 2011.


We are also still looking for those special, fun and loving people who can come and volunteer to play with Raffy on our Son-Rise program. Please copy, save and send our new poster out to as many people as you can. We are in the Greater London/West Essex area.
No experience needed, full training given!

Friday, 17 September 2010

Peanut the Elephant gets hair!

Raffy is becoming more adventurous with what he wants to do!

On Wednesday he told me that his elephant hasn't got any hair and and then asked to make some...

He told me to draw some in blue, there should be five curls and that I had to get the scissors and cut them out.

I put sticky tape on them and asked Raffy to put them on Peanut's head. Raffy stuck them all on one by one and then waited while I got the camera and actually posed for a picture!

Now that's real progress! What a wonderful boy! It's all working here! xxxxxxxxxxxxx

Sunday, 12 September 2010

Raffy is 4!

Raffy had his 4th birthday yesterday and managed to eat a lot of very sticky chocolate cake... he was a bit scared of his new extra large octopus... but these relationships take time to nurture. Early days!

We are now officially fund raising to take Raffy over to Massachusetts in June 2011 for the Son-Rise Intensive week! We got the maximum scholarship of $8,400 off - thank you to Jan-Marie and everyone at the Option Institute for helping us out!

We are raising $10,000 (US dollars) plus air fares! Very, very exciting... we have a donate button here on the blog so please think about donating any amount to help us with Raffy's program.

Many thanks to my Auntie Doris, Jenny Carminada, Mary Troy, Shahla Patterson, Nana & Grandad for the brilliant donations!

Also our heartfelt thanks to our own Cathy Saiz for 'Running to the Beat' on Sunday 26th September. This is a London half marathon - only 13 days to go!

Fantastic! I know Cathy has trained hard for this. I hope lots of people will help to motivate her to cross the line by giving whatever amount is possible for Raffy. Yay!

Much love xxxxxxxxxxxx

Friday, 10 September 2010

Bill & Ben the flowerpot men!!!

Decided to unleash the small fry in the garden last night for an hour before bed.
They managed to get hold of a bunch of flower pots! I was talking to my Auntie Doris on the phone and managed to get some photos....! Here they are...

They were taking turns putting them on each other and swapping them! Brilliant!

This is the start of a beautiful relationship. Raffy is so gentle with Eden, and Eden is the perfect mini volunteer! She joins, she challenges him and loves him unconditionally (Raffy's Mum) xxxx

Wednesday, 8 September 2010

Raffy, our gorgeous beardy boy!

Raffy loves making himself into a pussycat these days... with felt tip... and he does get a bit carried away when drawing the whiskers! This picture was taken yesterday and he still looked a bit bearded this morning after a lot of scrubbing...
Raffy is kissing Eden these days (with prompts!) and it's wonderful to see him becoming more and more aware of her.

Sunday, 5 September 2010

Cathy Saiz is running for Raffy!

We are now fund raising to get Raffy over to Massachusetts in the US for a week long intensive Son-Rise course! We are finalising the date next week. It's very, very exciting and also nerve racking... we need to raise some serious funds, we will find out next week the exact amount.

We have been given the chance of a big scholarship which could potentially shave the fee down from $18,400 to $10,000.

Cathy is gearing up for the London Run to the Beat half marathon on Sunday 26th September.
The course begins and ends at the O2 in London.

This is a fantastic start to getting to our target! Please support Cathy on 26th September by donating directly or using our Donate button next to this blog.

Thanks to Caro Hall, Kate Hanrahan, Margaret & Tom Rainford & Neil Barnes whose donations have started us off.

Also to Ronni at St Gregory's church in Lydiate and my loyal Mum & Dad who are planning on more events for Raffy this Autumn.

Raffy Update!

Raffy is doing really well, his eye contact is improving incrementally every day. He is playing with his little sister more and was tickling her tummy and under her chin yesterday morning! We are doing approx 2 hours a day in the playroom and would love to be able to do more.

We still need our first volunteer!

However the biggest difference is our attitude of love and acceptance for ourselves and Raffy. This is the most important part of helping Raffy.

He's a dynamite little lad with a huge capacity for fun and mischief. He is a gift to our family. He is expanding the people we are, helping us live in the moment and really be true to ourselves and others.

Go Raffy, go Cathy. Thank you to everyone reading this and I hope you can help in any way possible, Ruth & Bri xxxxxxxxxx

Friday, 13 August 2010

Playroom games!

We have started to use the face paint in the playroom... Raffy asked to play the 'new game' again today. He likes being a cat with Mum. Apparently cats have blue eyebrows and as well as saying meow, they also squeak... we did a bit of prowling too!

It's just really amazing to see Raffy saying meow and crawling round the playroom being a cat!

Then Raffy got on my back and said 'having a ride on mummy pussycat'! Brilliant!

Thursday, 5 August 2010

Playroom & Volunteer flyer!

The playroom is almost completely finished.

Walls are painted, flooring laid, shelves up, mirror wardrobes constructed! We need the second camera up, another shelf, to get rid of the curtains and buy a couple of blinds... have a look at the result!

It was initially difficult to get Raffy in there, there was a fair amount of 'want to go downstairs'... cue crying & tantrums. However as recommended by the Son-Rise we stuck with it and he is now really enjoying it!
In fact we have some definite good stuff happening in there!

Raffy is now asking to go in to the playroom and holding my hand to go in. He sang a whole verse of '5 little ducks' by himself and was actually trying to guess the next rhyming object on the new card matching game... !
He is also chatting more and seems a little bit more connected...
We are very, very pleased...

This is all when we are only managing to fit in an hour or 2 here & there. We will have to work up to a fuller program. Plus small sister has to be in there as well mostly.... we need babysitters as well as volunteers!

The funny faces on the mirrors and opposite walls were after a 'silly face' game, adapted from the 'Play to Grow' book, alongside some home-made badges... that was a very successful afternoon!

We have been very busy here... I managed to get a volunteer flyer together, finished last night rather late. All suggestions appreciated! And of course feel free to print some and pass the word. Remember we are on the Greater London/Essex border!!!

Our 'donate' button is back up! Maybe someone could test it out with an experimental fiver or 2? ;) x

We are now working towards getting Brian on the Son-Rise, so we are better focussed as a family and can work more effectively with Raffy. There is a UK version in January 2011 which we are aiming for. Also the 2nd part of the Son-Rise is called 'Maximum Impact' and I have been offered a preliminary place in April 2011. We will need about £3,000 to do all of this!

We are brainstorming fund-raising ideas at the moment, all suggestions will be keenly considered!

Thanks everyone! Love Raffy's Mum & Dad xxxxxxx

Thursday, 22 July 2010

Mr Raffy is very chatty these days!

Raffy is doing very well at the moment! He is talking more and very interested in other people. He is also doing lots of giggling and saying silly stuff like 'mummy's got a tree on her head!!' or 'Eden is a binky!' He likes a bit of surreal.

Raffy has a new musical octopus (courtesy of Mary Troy - thanks Mary!) who is very loved and gets a lot of kisses and cuddles. xxxxxxx

Sunday, 18 July 2010

St Gregory's Social Evening - Fundraiser for Raffy's Son-Rise Program!

Here are a selection of pictures of fun & music at the social evening on Friday 25th June!

Our special thanks to Ronni for organising everything so well.
Also much love to Mum & Dad and to everyone that showed up! xxxxxxxxxxx