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Well, I haven’t wrriten any update about Jamie for ages. To be honest, we have not had the easiest of times and this weekend I felt I had just about reached my limit. Without my husband Andy’s calm reassurance that we are helping him, we are doing the right thing I think I would have been oh so tempted to run away. But I didn’t I took a deep breath and carried on.

Today we wanted to take Jamie to our special pub for his lunch. It is closing soon for refurbishment and we are going to have such a difficult time replacing our Sunday lunches and finding somewhere else to take Jamie that he really really enjoys. Actually it is more than refurbishment, it is becoming a Wetherspoon Hotel. I don’t know whether Jamie will ever be ok going there again – it might be too different and he might not be able to cope – so many ‘mights’.

Anway, we drove into Doncaster, it was busy! We couldn’t find anywhere to park so had to drive around a bit. When we found somewhere, it was a bit further than normal, but not too bad, we have parked very near there before. Jamie wouldn’t get out of the car, so we waited patiently and I rubbed the back of his head – his reassurance! But then he started banging his head and getting upset, so we got into the car and started going back – there is no point in going to the pub with him like that and he was probably telling us he didn’t want to go for some reason, or that he couldn’t cope with parking there – or something completely different – I do not know. As we drove out of Doncaster, Jamie banged repeatedly – he bangs his head on the car window, so hard you can see the window move. It is horrible, awful but he just won’t stop and all you can do is ignore him. We have tried shouting at him recently to try and shock him out of the banging and it works a bit, but is horrible. I just want to cuddle him better but I can’t get near him, and he would hate it!

We eventually had a picnic at the RSPB nature reserve. Jamie doesn’t get out of the car but he seemed quite content. We got back to his home and he was a little upset, making it very clear that he didn’t want us there so we left! Not really a good day. Also I had driven down for a parents forum meeting yesterday and went to see Jamie afterwards. He was very surprised to see me and got upset – headbanging and biting his hand. I really should have known better but I persevered and took him out for a drive and a little snack. He was fine for a while then started banging his head. It was awful, I was on my own in the car, couldn’t do anything to stop him, could hardly drive. But we eventually got back to his home and he went back to his flat and I left, driving most of the 2 hours drive home in despair.

Today was no different  – driving home in a state of despair. And for the first time ever, I felt that I can’t cope with this, I’m making him worse, he doesn’t want us. But that is just being melodramatic. Of course he wants us. He is going through a really bad patch – it is always like this in the Autumn for him and I forget how difficult he finds it. And then I had the voice of reason. My andy who understands how I feel, who gives me support and help when he feels just as wretched. 2 weeks ago, Jamie started headbanging in the pub and we had to leave. He doesn’t get his treats if he does this, whatever the reason. No sweetshop! When we got back to the car, Andy was in tears – he finds it as hard as I do. He hates being tough with Jamie, but we have to be, we cannot give him an inch, otherwsie next time will be even worse – we know from experience!!

So we’ll carry on, trying to make his life a bit better, trying to support him as best we can, trying to give him some happiness. We will have good days and lots of bad days, but the good days will help us get through the others. We will carry on because we can’t do anything else. I would give you my life Jamie if it helped, I would do anything, I love you more than I can say and my heart hurts so much for you.

Things will get better!

Jan Mather

16/11/2014

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Comments on: "Jamie’s Sundays 16th November" (2)

  1. Dear Jan, I came to your blog via the article about Jamie’s concerts in the NAS newsletter, and I’m so pleased I have. Thank you for writing and for sharing your experiences. I wanted to say that the concerts are such a beautiful much needed idea and a thousand thanks to you and to Norigo Ogawa for thinking of them and then making them happen.
    My autistic child is much younger but boy oh boy your story this post is grimly familiar. Hats off to you for sensibly bailing out when the first outing was running into trouble. many of our most spectacular disasters have happened when I have pressed on in the hope that somehow the outing will “Come good” or because I can’t decide what will produce the biggest meltdown, pressing on or abandoning !
    I am so impressed you are going for your Doctorate. I had to stop work etc when my child’s problems became so acute, his appointments and exclusions so frequent that it seemed to be impossible. From the bunker of caring for a disabled child very difficult to take out, it is so heartening to hear that under such difficult circumstances you have achieved so much.
    I hope the next outing went better!

    • Hello Sally.
      How lovely of you to comment! And thank you for being so positive. Noriko is a wonderful person – if you are able to make any of the concerts, it would be lovely to meet you 🙂
      Yes, it is very hard to get it right isn’t it!!! Often when Jamie is in meltdown I always think – it’ll be better in a minute, but of course it never is until he feels safe again, and that means taking him home. And thank you for your kind words and understanding. It is a hell of a job we have landed oursleves with!!!
      I hope we can keep in touch – and yes, we have had quite a few good outings since then – today being one of the brilliant ones when Jamie was really happy – lovely 🙂
      Jan x

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