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

Sunday, 30 May 2010

Great Ormond Street letter

We finally have an appointment for Great Ormond Street hospital feeding unit on 29th June! A couple of big questionnaires to fill in, a food diary to complete and a request for any documentation that relates to Raffy's drinking problems.

I sometimes feel that I am spending my whole life filling in long and difficult forms. We just seem to get one off in the post (after photocopying and queueing at the post office of course) and then it's another or possibly two at the same time.

Another big one will be getting Raffy statemented this Autumn/Winter.
From what I can gather, the entire process can take over 6 months. Cor blimey.

Friday, 28 May 2010

Cycling in the Lakes, Summer down our way and other news...

Raffy and Eden were following me around the garden today which involved pulling things off the washing line (Eden) and hurling my door keys into the undergrowth (Raffy - yes the weeding needs some attention...).

Dom and Dom have completed their marathon cycle for Raffy. Brilliant. well done boys (still waiting for some photographs, hint, hint). I hope all their lovely family and friends are going to support their efforts and instead of treating them to a lemonade and cake, giving a fiver to the Raffy cause!

We have taken the 'Donate' button off the website because Paypal have frozen our account!! This means it is still accepting money (what a surprise) but we can't transfer/withdraw funds or close the account. All because they are refusing to accept we are not a charity or an organisation, just a family trying to make it simpler for our relatives and friends to support us... Not sure what to do next as they are refusing to answer our emails apart from their electronically generated blah blah. Any suggestions are more than welcome on this matter. Please use the comment box. So we are back to the cheque or cash scenario for donations, thanks everyone!

Speaking of thanks, I have more thank yous for Judith's Auntie Rita & cousin Angela, Mary & Mick Shaw, Lud & Sian, the ladies at my Mum's school reunion and Auntie Doris (for another gorgeous hand knit for Eden!). Much, much appreciated xxx more than you can know really.

We are still filling in the registration document for Raffy's Son-Rise Program. This is quite a hefty on-line form which is all about our boy's development and needs. Not long now until I go state-side for the training. Nervous and excited.

Raffy spoke to another mini human at playschool yesterday... apparently there was no eye contact, but words were swapped! Who knows what nuggets of intelligence passed between them! But we are very, very pleased. I think Raffy is really wanting to push outwards. I can't wait to start the Son-Rise with him! xxxxxxxxxxx

Sunday, 23 May 2010

Thank you to all in Lydiate & Maghull

Well, I hardly know where to start...! Many thanks to all in Lydiate and Maghull who supported my Mum's coffee morning on Saturday 15th May.
First of all to Mum & Dad, Brenda, Ron & Sue, Paul from The Academy for providing first prize (cut and blow dry) and his mum Marion, in no particular order... Pat, Matt & Jayne, Mary & Auntie Cath, Hazel Williams & Julie (my old school mate!), Carole McGowan, Jane Lennon, Kay Harker, Vicki Higginson, Marie Diamond, Maureen Mitchell, Vera, Marilyn & Peter, Brian & Carol.
Maura, Jean Cropper, Irene, Dorothy Manchester, Derek & Maimie, Jean & daughter & sister Ethel, Margaret, Ruby, Peggy & Eric - all from St. Thomas's Church.
Muriel, Michael, Teresa, Betty, Flo, Marie & Betty from the Rosary Group.
Eileen & Harry Doyle & Leslie from St Gregory's Church.
Thank you to Jon & Ann Ashley, Brenda & Margaret Edwards, Les, Alison, Paul & Karen Caldwell, June, Dianne, Lewis, Doreen, Marion, Jean, Auntie Margaret, Helen, Anthony & Jake, Karen, Mike, Tim & Adam,
Alice, Jan & Joan form line dancing, Maureen & Chris, Joan Bailey...
I’m sure there are more people, so thank you to everyone who helped, contributed, bought raffle tickets, named the teddy (!), bought sweets, drank tea, ate biscuits, and thought of our boy Raffy.
A huge £1,218.65 was raised!

I took this photo of the two nippers this week, amazing - they are actually playing together! So glad I caught it on film. Eden is good for Raffy, she really does just muscle in on what he's doing!

I booked the flight last night with Virgin Atlantic £649.97 direct to New York... and then I need to travel on to Massachusetts. I travel on Saturday 12th June so it's not long now. I still have to fill in the Registration form about Raffy's development and diagnosis. We need to start organising setting up the playroom. I will post more about this later. It's been a busy week, not had much time to post. I will need a thyroid operation later this year too, so that is another thing to think about. Social worker visit, a respite visit... a new pre school liaison officer... yes it has been tiring. I will post more on Wednesday fingers crossed, meanwhile a long day at work tomorrow and a hectic day at home for Brian. Cup of tea, washing up, hoover then bed!

Ruth xxxxxxx

Sunday, 16 May 2010

Lydiate has done Raffy proud!

My Mum's coffee morning/fundraising on Saturday has raised over £1,100! Which is absolutely amazing! St Thomas's church and St Gregory's church helped with putting the word around and of course all her friends, neighbours and family. Mum is sending me a list of everyone who has contributed so I will be posting lots of thank you's this week!

Just had an email from my big sis Karen, one of her friends has settled in Australia and is Grandma to 5 year old Declan who is also Autistic Spectrum. He sounds lovely. It was really interesting hearing about Roisin (his Mum) and Declan's week and how it's organised. It seems that Declan is getting some weekly help and one-to-one support but at a financial cost and with the problem of travel. Raffy has one weekly term time session with his support worker that lasts for 2 hours and he goes to normal playschool for 3 mornings a week (3 hours each). He also see a speech and language therapist every 2-3 months for 2 hours (at the same time as the 2 hour support session). Every 6 months he has a check up with a paediatrician which lasts about an hour. All this is free, but it boils down to 2 hours a week that sometimes doesn't happen (sickness, holidays, other review sessions for other kids etc.). We could pay for an independent speech and language therapist for an extra 2 hours a week but this comes in at £50 plus for each session and it still seems a drop in the ocean.

The thing about the Son-Rise Program is that there is financial outlay but ultimately spread out over the years it's actually very cheap, it puts the control back in the parents hands, you gain a network of people who are also doing the program, and you can organise full time, one-to-one, bespoke support for your child which would be totally out of reach under any other circumstances. Most Son-Rise programs seem to run for 3-4 years. We can't possible know the outcome for Raffy but compared to a potential outcome of a lifetime of no friends, residential care, no job, depression and cared for at home by us it seems worth the effort and risk. It's going to be hard work but it can only improve his chances. Of course we can see a bright, funny, charming, sociable little human struggling to find a way out his protective shell and I hope we can help him achieve all he wants to.

I will be putting up a picture of Dom &Dom today or tomorrow before they start their epic bike ride on Thursday 20th May for Raffy. Thanks lads!

Finally well done to my nephew Tim for being awarded Player of the Year up in Maghull for services to the beautiful game! (Well done to my other nephew Adam too for just being cool!!).

On a final happy note, after months of Raffy hating and loathing bath time with a vengeance, I can report a complete change in mood!

Thank you for reading all this, hope you enjoy the pictures taken last night, Ruth & Bri xxxxxx.

Saturday, 15 May 2010

Raffy day in Lydiate!

Tea, coffee, gossip, games and prizes round at Pat's place today 10am - 4pm!
Hope everyone is having a lovely time in Lydiate at the Raffy Coffee Morning.
Even if it's rainy, cheer yourself up and nip over for some tea and chat with Pat and friends. Wish I was there! Ruth xxxxxx

Friday, 14 May 2010

The Magic Beans Collective 12-23 May in Clerkenwell!

Come and see some really exciting artwork tonight in Clerkenwell - knitting, drawings, collage, subversive embroidery, artbooks... and cocktails, snacks, music, chat!
97-99 Clerkenwell Road near Farringdon tube 6-9pm. Come over, have a look around, maybe think about buying some knitting! Ruth & Bri xxxxxxxxxxxxxx

Thursday, 13 May 2010

Lydiate Coffee Morning for Raffy on Saturday 15th May 10am-4pm!

Pat and Brenda (with help from Stan) are gearing up for the thirsty masses to descend on a small terrace in Lydiate desperate for tea and biscuits. The front room has been freshly painted and the mugs polished in preparation.
Raffy pyramids on sale for £1/£1.50 each containing sweeties or chocs, Raffy Raffle, Name-the-Teddy... Lucky Dip, refreshments! It's all going on, pity I can't come... have fun everyone. Thanks Mum! xxxxxxxxx

Wednesday, 12 May 2010

The Magic Beans Collective 12-23 May in Clerkenwell!

A very tiring week here. Took all the knitting down from Lauderdale House on Sunday night - Raffy & Eden were very good considering it was such a long day. A small amount of moaning took place concerning Raffy's love/hate relationship with Octopus! Here he is with the new addition to the gang! But no tantrums just a rather disconnected boy...

Many thanks to Nina, Jenny & Adi for purchasing and giving good homes to some knitted people! That has been a real boost.

Damon made a fantastic donation but shame couldn't get in to see the show on Saturday afternoon (function on upstairs...). Also donations from Neil, Vicky, Auntie May, all brilliant.

I've been invited to show with The Magic Beans Collective (love that name!) at 97-99 Clerkenwell Road from this Friday. Private view is Friday 14th May 6-9pm. All welcome! So if you didn't manage to see the Lauderdale House show or make up your mind about which knitted family to buy, now is your chance!
The exhibition runs until 23rd May.

It looks like Friday will be another marathon day, hanging show, then fingers crossed going to the pv later.... Our beloved Auntie Phyl will probably be able to look after the two mini humans for a few hours.

Watched the BBC documentary 'I want my little boy back' about the Birmingham family who embark on the Son-Rise® Program. If anyone wants to borrow this please let us know, it's absolutely spot on. Jordan is a great young man and the Broadrick family are in a very similar situation to ours.

Ruth xxxx

Wednesday, 5 May 2010

Lydiate Coffee Morning & Raffle for Raffy on 15th May 10am-4pm!

Top secret talks are going on at the Hare and Hounds in Maghull, Liverpool this lunchtime in preparation for the coffee morning on Saturday 15th May. Pat and Brenda will be finalising details of the Lucky Dip, Name-the-Teddy and Raffy-Raffle... first prize a free cut and blow dry from Paul at The Academy. More information to follow!

Many thanks to Mum, Dad, Brenda, Ron, Paul, Marion, Vera xxxx

Monday, 3 May 2010

Coast to Coast cycle ride for Raffy on 20th May

Dom Wright and Dominic O'Neill have decided to do a Coast to coast cycle ride for Raffy's Son-Rise program starting from Whitehaven on the West coast of the Lake District over to Sunderland on the East coast, they will be going on a rather ridiculous circuitous route via Keswick, Greenhead at Hadrians Wall, Consett in Northumberland and then hitting Sunderland 3 days later.

They haven't done anything like this for about 22 years when they were eighteen or so and a lot fitter than they are now, they are going to have to get some of the gaps between the mountains in the lake district widened so that they can fit their copious bellies through! I'm quoting directly from Dom Wright here!!!!

Donate here to sponsor the two Doms (please persevere as we have a glitchy Donate button which is currently being sorted out via Paypal).

Many thanks to all from Ruth & Bri xxx (Raffy's mum & dad)

More images coming soon! (awaiting a pic of both athletes on their bikes!)

Bank holiday Monday with Raffy!