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

Monday, 11 November 2013

Games, words and follicles

First of all he's had a birthday. The card is still up and intact. First year he hasn't had the urge to rip it up

Raffy is showing a keen interest in letters and words. 

Our homemade games run along the lines of his current interest. The human biology book. 

Favourite chapters include reproduction and sub atomic particles. 
Mixed in with the usual octopi obsession. 

It's generating lots of interesting questions for mum and dad

He's still a keen artist. 
Here we have a masterpiece showing a uterus and one detailed ovary with zygote, morula, blastocyst.

Plus Totoro grinning bottom right. 
He likes a bit of Japanese animation

Bottom line is Raffy has an amazing capacity for knowledge and humour. He is a challenging companion but so hilarious at times. He is playing with lil sis every day now. She wants to marry him. Even more than the boy next door :)

Tuesday, 16 July 2013

The Guru

It's been eventful here what with summer starting and new things happening around the homestead.

Raffy has been to the beach, eaten icecream using a SPOON, been car sick but TOLD me that he had a pain in his tummy before it happened and got back in the car afterwards, peeled a banana by himself and ate it. The list is endless!

He also locked me and small girl out of the house on the hottest day of the year. However he did let us back in the house after 45 minutes. After yelling at me to 'clear off!' and that I was TOXIC!
He punctured the new paddling pool within 8 hours of purchase.

Death and being ill are his new themes. He has been pretending to be a dragon with a sore horn or a dying cat for the past week. This includes sound effects and descriptions of blood. And being buried

I am reading a great book. It was dipped in the paddling pool then had several large wet corners removed. It is called Practising The Power of Now by Eckehart Tolle. I would recommend.

I practiced being present, acceptance and having fun while we were locked out of the house and when I was finally mentally relaxed and feeling fine... Raffy nonchalantly unbolted the door.

Wednesday, 26 June 2013

Thrills, spills and toothache

I have had a fear of Raffy having toothache for a long time and Satutday morning seemed to be the day when it finally happened! He spent the whole morning poking at his teeth and gums on the right side with his favourite octopus - Ketchup Octy and various other objects from his box of 'stuff'. Hmmm.

The back story is that Raffy has hardly had his teeth brushed in the last 4 years. He hates and loathes having the toothbrush anywhere near his face and hollers, complains and uses many and varied delaying tactics to stop the inevitable. When he was 4 we stopped brushing his teeth for months as we wanted to help him start to drink and it seemed that the toothbrushing was not helping him relax with the whole oral sensitivity thing.
These days we brush maybe once a week at night time and it varies from Raffy attempting to chew the bristles off the brush and screaming to gritted teeth and low level moaning. He hasn't seen a dentist in eons.

Well there were plenty of opportunities at the weekend for pretty much everything. First off Raffy explained that his teeth hurt at the top right and pointed to a spot in his mouth. He wouldn't let me look but he said it hurt and felt spiky! He also asked me the difference between teeth and gums and what would happen if all he pulled all his teeth out! So great inquisitive communication from Raffy. He also asked me what the tooth fairy looked like and I was surprised he had even heard of a tooth fairy as we've never talked about this with him!
He allowed me to brush his teeth very gently morning and night all through the weekend with lots of explanations about how it would help. He made only a slight fuss and even put his hand on the handle of the toothbrush.

We managed to book him an appointment on the Monday afternoon with the community dentist. By this time he had rubbed his mouth so much that he had a bloody rash that was slightly swollen the right side of his mouth. He continued to eat and drink.

The dentist trip was pretty traumatic all round but we managed to coax him in to the surgery. And finally after around 25 minutes and both his dad and I helping, he had a thorough dental examination.

Amazingly the dentist said his teeth were in good condition with no decay, no sign of any abcess. He is getting his adult teeth at the back and she thinks this is where the discomfort lies. Or possibly and ulcer but she couldn't see one. PHEW!

So the only challenge now is to explain that rubbing his cheek and mouth will only make things worse and that his diet, although limited, is definitely helping his teeth! He is on a gluten free, sugar free diet at the moment.

Yay for Raffy!!! BTW the photos were taken last week!

Monday, 3 June 2013

Raffy, a potted update

Raffy is now a beautiful 6.5 years old and his parents have been running a Son-Rise Program for almost 3 years. Raffy is talking and full of mischievous fun. He is a bare foot wonder who asked for his first hair cut last week!

He said he wanted all his hair cut off so that he wouldn't need it washed any more! I like his thinking! Life wasn't always like this, however. When his SR program started Raffy didn't drink and would only occasionally tolerate thickened fluid offered on a tiny teaspoon. He was in and out of hospital with dehydration, he would scream for up to 2 hours and was only repeating phrases that he had heard and mostly they had no funtional value. He was echolaic.

Now he is drinking water by himself and he is talking so much! He answers and asks questions. He asks us 'why?' to know about the outside world. He offers us his opinion. He is conversational and tells lots of incredibly fantastical stories. He is a very entertaining companion! He also uses gestures and is very expressive in face and tone.

At age 3.5 his eye contact was an occassional flicker from the corner of his eye. Now he is looking while he talks and referencing two people or more in a conversation.

He plays simple board games with his sister and parents and loves playing hide and seek.

His mum and dad are so grateful for the Son-Rise Program and to all the volunteers who have played with Raffy over the past 2.5 years.

He is still on his journey to develop his social and life skills but he has come such a long way. His parents want to carry on their training and to take Raffy to a 5 day Intensive to continue to help him progress.

Would you like to be a part of Raffy's incredible journey? Please donate any thing you can.

Friday, 24 May 2013

Cuddles and Snuggles

For a long time Raffy refused to acknowledge his little sister's existence.

When he first started to say words he would not say her name.
Later he would move past her without looking and would ignore any attempts at connection or play.

However, she would persistently copy whatever repetitive activity he was involved in, diligently finding toys that were similar and then moving in the same way.
She would follow at a safe distance and make the same noises...
'Joining' as the Son-Rise Program would call it!
We used to joke that she was his first Son-Rise volunteer!

In the last few months Raffy has gone from pushing his sister away and shouting at her when she was too close to playing with her for short periods of time.

They play hide and seek and form a small gang fighting and conquering invisible monsters. The latest news in their growing relationship is snuggling and cuddling. Raffy pretends she is a toy teddy bear and they embrace and cuddle up! Here are the pictures..

Wednesday, 22 May 2013

A summer haircut without the sun

Raffy hates having his hair washed. He is very sensitive to having anything done to his hair and dislikes   being wet. In fact, he seems to crave 'dry' as a sensation in all areas. To the extent that he would hardly take in fluid for 3 years and had to be encouraged daily to have a teaspoon of thick fluid... but I have probably covered that topic to death! He now drinks and looks after his hydration levels admirably but hates baths and hair washing again. This seems to come in cycles. Inexplicably. Sometimes he loves having a bath, other times he loathes it. And screams and goes mad at the mere mention of it. We are currently in a 'hate' period. He really hates having his hair washed. I casually mentioned that if he had all his hair cut off, then he wouldn't need it washed and brushed as frequently. Later that day he asked for a haircut with "dad's clippers". He was very patient.

Monday, 13 May 2013


Raffy has been changing in so many ways it's hard to know where to start. He is talking so much now and asking lots of questions of the 'why' variety. He answers questions very readily too these days with no hesitation (mostly!). He is full of repetitive stories and flights of fancy and silly jokes. He loves the idea of potions and magic and is coming out with funny phrases as part of his stories. Biggarizing spells to make things expand is a favourite theme. Or things exploding or everything having a life and personality of their own. He is also fascinated with babies and the fact they can't talk or walk yet and why that is!!

We have had ups and downs with volunteers. One person has just left which was a blessing even though I know she did her best. We have had another person come back after a year which has been a life saver. Son-Rise vounteering is as easy as you make it and requires no special talent apart from love and energy. However the people are required to be honest and open to personal change. This ease and trust is how Raffy is able to see the world and want to embrace it. This is the motivation for his own development.

Meanwhile Raffy refused to go outside of the house for 2 months and recently will only venture forth barefoot but prefers to be carried! This makes life problematic in a multitude of ways... more in my next post.

Friday, 15 February 2013

Raffy's Fab Clothes Swap Fundraiser Sat 2nd March!

Do you live in or near London? Are you free between 7pm and midnight on Saturday 2nd March?

Come and bring your unwanted civvies (clothes), £5 on the door - leave with a whole new wardrobe (outfit)! Eat cake, drink booze or tea. Buy some bling or a ballgown! Flounce out with a Raffy T-shirt!

FUNDRAISER ALERT! Get down to some electro swing at the Tea House Theatre... all proceeds go towards the next stage of Raffy's Son-Rise Program!


Monday, 28 January 2013

We are still here!

It been a tough year, no mistake and I am so sorry to have let this page lie dormant for sooo long. We had to move house and it was very difficult to find somewhere else. We are now in council housing so won't have to move anymore (fingers crossed)! Yay! But the house was in quite a poor state when we moved in and it has been a long haul. Raffy found it all very hard and our Son-Rise program ground to a halt for several months. He really did not want to leave the previous house. However... things have definitely changed. Raffy is talking up a storm! His words and sentences have improved and developed. He is saying 'I' and 'me', 'you' and 'your'. He is telling us about himself - sometimes loudly!
Here is a photo of our grown up boy. I will be posting more up this week. Our program is now very much alive with a new volunteer just interviewed today. Bringing our total to 3 people!
Gemma, Annie and now Kirsty.