My twins are now 4, both are autistic, non verbal, delayed across the board except for gross motor skills. They were diagnosed when they were. They both understand a lot from context and show excellent problem solving skills when motivated, but they don’t understand words.
I’ve just been through a long and brutal battle to get them into a specialist ASD school which they are starting full time next week. They both have 1:1 support full time there, at home our time is spent preventing them from injuring themselves and trying to keep them calm. Learning, playing with toys etc is limited despite my efforts.
I’ve been so focussed on getting them into the right school that I haven’t really allowed myself to think too far ahead. But now they’re about to start I realise I’ve been pinning all my hopes on the support they get there being enough for them to make progress and now I’m scared it won’t happen, they’ll never learn to understand or communicate, and that crushes me to think about - when they’re sad I don’t know why, if they’re in pain I don’t know what hurts etc. I can’t imagine going through life being unable to tell someone what’s wrong or share how I feel.
I need to know what their future will be but obviously no one can tell me this. Until now I manage by thinking very short term but I’m struggling to do that now. My brain is constantly running all kinds of possible outcomes, most of them not good. It’s just stupid things that are bugging me - they had their last day at nursery and the staff were in tears, and the boys have no idea they’ll never see them again. Or it’s about to be another Christmas where they don’t know what Christmas, don’t know what presents are, where we can’t put up a tree properly because the decorations are a hazard, etc. Seeing all my friends kids excited about Christmas is for some reason really upsetting me, which makes me sound awful.
It would be really helpful to hear from those whose children with significant difficulties relating to ASD are now older, teenagers or adults, to know how things have panned out. How do you manage? Are they happy?