Raffy has his 6 monthly developmental check up tomorrow morning. That's going to be interesting, he hates being investigated! His notes said 'defiant' after the first one a year ago...missing the point about autism really (difficulties with cognitive skills & lang). We have also finally been referred to Great Ormond Street Feeding Unit, so we will need to remember to make sure the letter has been sent and the wheels are actually in motion. Referrals can be forgotten about. We've been trying to get to the GOS Feeding unit for over 18 months! This is how long it's been since Raffy drank anything... hard to believe. I used to think he would die overnight, now I worry about the damage to his internal organs. Anyway it's all worry. No wonder my immune system is going mad!
The Son-Rise have well-documented positive outcomes for children with severe feeding problems, far more extreme than Raffy. Raffy has just managed to avoid having a tube inserted through his stomach. Basically i think because Brian and I do round the clock spoon feeding. It has taken up pretty much all our resources over the past 18 months - in terms of time and hence finances!
I've lost a lot of faith with the UK orthodox approach, it's good up to a point. But it's still all parent led. You get bits of advice but it's not enough. I think we really need the Son-Rise Program now, before we all go under as a family! This is why we are asking for your help. I am someone who is pretty private and I don't like asking for help but this is about our wonderful boy and also not just him... this is affecting us all and I know it's not sustainable.
Ruth - Raffy's Mum