Know how you feel. Isolated even in a crowd… you sound like s very strong lady xx
What an amazing opportunity. I dream of days like this, gutted that we missed the opportunity to go. I really hope its not a one off. Lovely written blog. Xxx
From the moment I heard there was to be a one-off autism-friendly performance of The Lion King, I knew we had to go. Musicals have been my greatest passion ever since I was a teenager, and even when I was pregnant with my twins I’d dream of sharing this joyous experience with my children. I would lay in the bath singing show tunes to my bump. In fact I went to see Wicked when I was about three weeks pregnant – before I was even aware that my little ones had been created.
Once J’s autism came to light, however, it seemed less likely that he would enjoy a West End show with me. J has hyper-sensitive hearing, can be overwhelmed by large crowds, and does not seem to grasp the need to be quiet in certain situations. So when I heard there was going to be a performance of…
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So its back to school tomorrow, looking forward to getting back in a routine but gonna miss the lie ins!
Thought I’d share with you some of Charlie’s talents… For years his teachers have battled with him to hold a pen in the correct way. Despite their efforts he continues to use a fist type grip. This hasn’t seemed to cause him any problems when it comes to accuracy… He’s never been able to put more than a few words together on a piece of paper but when he does write (normally labels things ) its very neat and tidy. Not a classic style of writing but one imitated from the text you would find on a keyboard! His obsession these last 2 weeks has been ‘flanimals’ by Ricky gervais, this is an old obsession of his that has just resurfaced. Charlie has many obsessions – started, of course, with Thomas the tank engine – we still have a miniature version of the island of sodor sprawled across his bedroom floor. I don’t think I’ve met another autistic person yet who hasn’t had the ‘thomas’ thing. When he was little he had no speech at all but he could recount the names number and colour of each engine he had been introduced to! I remember thinking how lovely it was just to hear his voice, even though it made no sense. Charlie was 5 when he first said hello. Although he has speech now I don’t think it makes him any less autistic… It is after all a social communication disorder and if anything the use of speech can often make him even more confused or anxious… Verbal reasoning is often out of the question – there’s no negotiating with him – when his mind s made up its crystal clear to him how things should be – no deviation or alternative is acceptable.
Sorry this isn’t a very good photo… Believe it or not this isnt a print out from the computer or just something he has coloured in… He’s done the whole thing free hand and exactly to scale as the pictures appear in the book… What a clever boy!
I guess all mothers feel guilty from time to time. Constantly making sure we do the right things by our children to ensure they grow up to be they best person they possibly can. I’ve never felt guilty for Charlie being the way he is – but I have, at times, felt that I’ve taken the easy options or perhaps put my own wants and needs before his…
Have I relied too heavily on the computer to keep him entertained? He loves the computer – its been educational for him in lots of positive ways and he seems to have a talent for navigating around it, which is natural – perhaps because the order and logic involved, as far as Charlie is concerned, is very simple. But it has had its issues… This is where Charlie has gained his very ‘blue’ vocabulary from. We were mortified when we got a phone call from his pastoral care worker at school to tell us he’d been singing a Teletubbies song which included the line ‘Teletubbies come on your chest’ Its easy to suggest parental controls but when he wants to watch videos on YouTube on how to adapt a battery controlled train to operate in reverse or watch adverts for premier inn (more on that later!) it seems cruel to deny him such joy.
I’ve been on a mandatory lecture this morning. This included equality and diversity. Apparently as the mother of a disabled child I should be treated with equal rights to that child. Its called ‘associative discrimination.’ The events of last Christmas day was playing through my head… I was working the early Christmas day – by the time I got home Charlie had ripped the paper off all the presents, managed to throw a new train out of his window onto the roof, destroy a DVD and miraculously destroyed his new Google tablet from the inside and put it all back together so it looked perfect! He was not a happy boy – too much unpredictability, sensory and emotional overload. And mum was not there to divert or defuse. A pretty memorable Christmas for the wrong reasons. Perhaps I should use the ‘associative discrimination’ act to ensure I get Christmas off? So here comes the guilt thing again – don’t want to use Charlie as an excuse not to pull my weight or make the same sacrifices as everyone else. And of course the guilt that I actually love my job and the people I work with and yes, at times, I’d rather be at work than at home. The ‘haven’ being my place of respite. Xx
Back to school following the Easter holidays has gone well. Charlie likes his routines… They do vary from time to time but on the whole things are good if they are predictable. Change is a normal part of life, even the best of us don’t like it though… In my career I’ve learnt about the ‘change curve’ and how to ‘manage expectations’ which is fine when change is something that you have anticipated. We have tactics that help manage this for Charlie. Picture timetables are useful, social stories help him to visualise how things are going to go. He rarely reacts positively to suggestions of change though… Everything has an order and a rationale that must be adhered to… His birthday is fast approaching, and like Christmas, is a time of much anticipation but shrouded by anxiety and fear. Charlie has decided that he would like to stay in a Premier Inn! This has been fuelled by the Lenny Henry adverts and has been one of his obsessions for the past couple of years. In his head he would like to go to one in London, on his birthday, and in the morning the ‘man’ will bring in his presents! Hope he’s not expecting Lenny to knock on the door! This has presented us with a bit of a challenge as we’ve not been able to book the night of his birthday – it falls on the bank holiday this year so not only was it ridiculously expensive but it was impossible to find the ‘right looking’ premier inn that was available… So we’ve booked it for the week before his birthday – we’ve planted the seed, shown him a timetable of events and tried to sell this idea to him… He’s definitely not sold on this – his birthday is the 25th and that is non negotiable. Not sure what my plan is from here, I think I’m just gonna play it by ear…
When Charlie was little he seemed to be aware that it was wrong to lash out and hit, so when he got angry he would spit at us – a form of physical aggression that was non contact. As he got older he would inflict the pain on himself… Bite marks on his arms or banging his head or even throwing himself into walls. Now that the teen years are upon us his anger is directed at causing physical destruction to objects – laptops, phones, smashing holes in walls, kicking in doors. And although he’s not physically aggressive towards us, sometimes I find myself in the line of fire or sometimes getting hurt when trying to restrain him. He seems to have enormous strength for someone slightly built – he has ‘incredible hulk’ moments, and even rips his own clothes off when he’s in a rage.
So anger management is work in progress – the picture are a few of the current casualties from Charlie’s meltdowns.