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If you have just received a diagnosis for your child - the UK does now recognises the importance of early intervention, but getting it in place can be a mammoth struggle. Keep in mind that your autistic children will continue to develop throughout their lives – for example, if your child hasn’t talked by the time they are five, that doesn’t mean that they definitely never will. The greatest resources you have are your love, hope for the future, energy and enthusiasm, but they must all be ‘restocked’ and ‘recharged’ regularly. I was tremendously stressed to begin with because iit felt like there was an invisible clock ticking away precious seconds, because we were unsure what we should be doing during that time, I felt I was letting Archie down every second of every day. It’s impossible not to become a little obsessed with finding answers for your child – only someone in your situation will truly understand that, but do try to pace yourself and be kind to yourself – this is definitely a marathon and not a sprint.
Though it may feel impossible, you do have to work towards scheduling in some times every week when you do whatever you need to relax and recharge. If you are unable to do so because no one else can care for your child, then getting good childcare support in place is the top priority. If exhaustion is preventing you from thinking about anything at all, then sleep has to be the first priority. It has taken us a year of hard work, environment adaptation, diet intervention, behavioural intervention and installing CCTV in Archie's room (so we can check he is safe without entering the room) before we are now in a situation where we all get 'some' sleep, 'most' nights - this is a massive improvement on where we were last year, and we see regular tiny improvements all the time - it's been a long road for us to get to a place where we can start thinking about our personal needs - but it's happening, and it will for you too.
Try to 'stay in the moment' as much as you can. It is very difficult on a daily basis not to be fast-forwarding to implications for the future, or rewinding to try and find what happened to make your child 'different', or even just working out the logistics of getting everyone fed, clean, dressed and where they are supposed to be each day! - This is only natural. Try and give yourself 'zones' of time when it's okay to go time travelling in your head, but when you are interacting with your child, make it a 'here and now' time - you can't have fun and be engaged when you are elsewhere in the past or the future. 'Having fun' with your child will be the most inspiring and recharging activity of all - again, if you are currently getting no interaction with your child at all, don't despair about what that means for him. Eighteen months ago we watched Archie from the edge, wondering what on earth we could do to even start interacting with him - but the watching was the start - by getting to know what he liked, and by learning how to make ourselves interesting to him, bit by bit the channels of communication opened up - they will for you too.
In times of exhaustion - cancel everything that isnt necessary, without guilt. Don't stand when you could sit, dont sit when you could lay! If feeling unappreciated - go buy yourself a dressed lobster from M&S food hall or something else that floats your boat. Look after you, so you can look after everyone else!
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