Hi, I’m new to this site, so please forgive any apparent naivety on my part to this post. My wife and I are Parent Carers to our 29-year-old son, born with Hydrocephalus and now has Epilepsy, both hearing and visual impairments, physical and learning disabilities. Throughout his life we have been guided through ‘special needs’ schools – though asked to leave a college due to his lack of ‘capability’ to achieve in even basic life skills lessons. Our focus has been on his Epilepsy and Learning Disabilities and it is only recently, when a new GP referred us to the Learning Disabilities directorate of the local NHS, did we get input from a community nurse who seemed to understand immediately that our son suffers from Autism.
Needless to say my wife and I have been reading copious amounts of literature as well as subscribing to NAS to understand as much as we can. Little by little, we are finding information buried within a mass of other guidance and discussions and there has been some very valuable ‘nuggets of gold’ we have adopted and had seemingly immediate improvements to our son’s behaviour and attitude. For example, a time lapsed clock, a method of creating an outlook calendar with picture illustrations of things to come so we can discuss them and get ready for them (a major area of difficulty for us all was that ‘random’ decision to do something, resulting in a meltdown)
Much of what we do read however is aimed very heavily on the ‘child’ with Autism and the care and attention which is so valuable in the early years. Or to those with AS where the individual is a lot more independent but needs additional support and care in their activities. Where we struggle is to gain information dedicated (rather selfishly and please forgive me here) on how to support an adult who has serious learning disabilities and to talk through mindfulness or CBT techniques is meaningless as he just doesn’t understand or able to think for himself and we need to put ourselves in his position to ‘translate’ the action or activity into words or meanings he will understand. We desperately want to help him through to a level of independence, but current feel there is a ‘niche’ area her that we cannot find direct references to.
Maybe we just have not come across the right place yet but if anyone has any guidance to offer, I would be very, very grateful.
Very many thanks
Jasperlad
