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.
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