Glugging & slurping... & drawing

Raffy was pretending to be a pussycat and asked for a bowl of water 'soup'.

He bent down and took a SHLURP... Cue FANFARE!

 The beginning of his journey to drinking after a 3 year drought! 3 years and 2 days!

He is now picking up a water bottle on his own and independently drinking... water! The first time water has ever passed his lips.

The effect on mum and dad has been BIG!

A release from the daily, hourly offer of spoon-fed thickened smoothie... the ritual, the particular colour, consistency, the almost constant rejecting... arhhhhh.

Breathe... relax, let go.

We are so grateful for this time!
Thank you Son-Rise for giving us trust and strength, thank you to all our amazing volunteers for the 'modelling', fun and most importantly the belief.

And he is drawing the most beautiful and imaginative creatures (more pictures to come... these creatures are now having adventures!).
Please celebrate with us and enjoy the pictures.
(Meanwhile mum is having a burst of eczema... another release after 3 years of emotional tension. Embrace...) x

Outreach excitement!

We had the most amazing outreach with Gerd Winkler a Son-Rise teacher last week.
All Raffy's volunteers made the extra effort to come along for some or all of the 2 day outreach.
Most of us did mini sessions in the room with Raffy and then had feedback and in my case feedback about my feedback!
It was hugely empowering and unifying for us all.
The other great news is that Raffy has progressed even further than we were daring to believe. He is much more interactive and for longer periods of time.
We are now building more frequently when Raffy gives us green-lights (connections with his eyes, speech and body). It is making for much more energised and silly playroom sessions!
Raffy's sister was entertained by Inga, Jack, Becky and 4 year old Izzy for periods of the outreach... both kids had a marvellous experience!
Here are some photos of Raffy from before the outreach, a group meeting and prep for a session....

More words, a wedding & lots of hiding!

Raffy had a great weekend. He met lots of new people and went to a busy wedding reception. He is much more relaxed even in crowds of strangers. He is also talking more and using words like 'if,' 'because' and 'supposed to'... he's even started saying 'I mean...'!

Of course he loves pretending to disappear by hiding... even under his wedding outfit (thanks for the shirt Tim/Adam!).

This is Raffy on Saturday afternoon. What a handsome chap!

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!

Raffy Progress report!

We are looking to expand our small but brilliant volunteer team for Raffy's Son-Rise Program.

Our boy is progressing in all areas!

Raffy is...

Starting to have small conversations around his favourite topic - such as insects especially ladybirds, shapes, helicopters, octopi and cats!

Pretending to change in to imaginary creatures!

Using more gestures and facial expressions!

Riding a push-a-long-trike to go on adventures!

Doing more drawing!

If you live in the London/West Essex area please spread the word about joining Raffy's Team.

We are offering full FREE training with the Son-Rise program - a home based, child centred therapy.

We are looking for energetic, creative and loving volunteers to play 1:1 with Raphael (age 4) who is on the Autistic Spectrum in his custom fitted playroom.

This is a fantastic and unique opportunity to make a life-changing difference in a little boy’s future! Are you ready to be more giving, more accepting and creative?

Raphael is a wonderful happy boy who is verbal and becoming more connected and socially interactive.

We have a small team already in place and you will be doing 2x 2 hour sessions when fully trained (4 hours each week) and attending our fun goal setting team meeting every 2 weeks.

We pay towards travel and provide food at the team meetings.

A 6 month minimum commitment is needed so a consistent bond can be created with Raphael.

A professional reference is available from the non-profit organisation ASD Climbers if the 6 months are completed successfully.

Contact r_breckell@hotmail.com for an application form

Thank you! xxxxx

Helping Raffy to get the specialist treatment he needs to survive!

Raffy's beloved Nan is organising another Social Evening at St Gregory's Church Hall in Lydiate near Liverpool this Friday 20th May!

Gordon Hopwood will be providing the comedy and musical entertainment.

Admission is only £5 and all proceeds go towards getting Raffy and family to The Autism Treatment Centre of America in Massachusetts in December this year for 1 week! http://www.autismtreatmentcenter.org/

We need to raise £3,000 to pay for the rest of the week (we have already paid $5000 with savings and donations) and £2,000 for the travel costs.

The week will be full of one to one therapy for Raffy and training for his Mum and Dad so the family can come home and really develop his program at home. Raffy is still only accepting small amounts of thickened fluid from a spoon (fed by Mum or Dad) as he finds drinking too much of a strain. Sometimes Raffy will refuse fluid for entire days and this is a hugely stressful way to live. Mum has needed to give up work and Raffy needs to be monitored for dehydration and needs round the clock care. We have researched every available therapy (the NHS & Great Ormond St Hospital were unable to help) and the Autism Treatment Centre/Son-Rise Program Intensive is the one place we will be able to concentrate on this issue with 24/7 support and expertise.

Please help by coming to the Social evening and/or donating via this website.

Raffy is already developing in so many ways with the Son-Rise Program, we monitor his progress and know which goals to work on and how he will progress. His drinking issues need the specialist round the clock care provided at a week long Intensive.

If anyone has any fundraising ideas of their own, please contact me via this site, we would be eternally grateful.

I hope you enjoy the pictures of our beautiful boy and are inspired to help him with his journey through autism...

Learning more for Raffy's Son-Rise Program!

I spent last week soaking up more great learnings that will help Raffy and the rest of the family at The Autism Treatment Centre of America.

A beautiful place filled with wonderful people. There is so much expertise and support here it is hard to understand why the Son-Rise Program hasn't got more supporters in the UK.

I spent the week feeling empowered, excited and confident to request Raffy to try more and more to push through his difficulties. In such a loving and fun way that he wants to be stretched!

We have seen great strides in Raffy's progress so far. We are incredibly proud of his determination. We are giving him more confidence so he can leave his intense fears behind. We are showing and 'modelling' more ways he can successfully interact with other people.

We celebrate him every day and ask more and more of him. It's fun! We are working WITH his motivations and interests so he can become more flexible and increase his attention span. Then we ask him to widen his motivations and interests! All in a safe and loving place - at home in his playroom. We don't use electronic games or TV. It's all about one-to-one contact as a starting point, then gradually broadening out. It works... big time. And we know the families who have recovered their children. I've said it RECOVERED. This is supposed to be controversial. It's not. The brain is incredibly receptive. It's been done. ALOT. We are here for the bigger picture! We love our boy as he is today, we want more for him... but we don't need it. We've made our lives exciting and incredibly meaningful!

Hope you enjoy the photos!