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Jamie’s Sundays 2nd March 2014

I haven’t written about ‘Jamie’s Sundays’ for a while, well since a while before Christmas. I was all set to write another post, but Jamie had yet another day of seizures in fact it was worse because he started on a Wednesday evening and then carried on with 3 on Thursday. I didn’t know but his first seizure was very different to normal – he usually has a lot of body jerks and leg shakes, but in this one he was totally still, as if unconscious. He had also stopped breathing! Thank goodness for the vigilance and quick actions of his support staff, they turned him and banged his back and, thank goodness, he started to breath again. The 3 seizures the next day left him shaky and unsteady but he recovered well .Since that awful time, Jamie’s seizure pattern seems to have returned to normal – 3 seizures a day every 3 or so weeks. It’s not nice for anyone to cope with, but when you can’t tell people how you feel it must be awful. I know how I feel when I get the dreaded phone call. I want to be with my beloved son, but I can’t because he needs to sleep and recover.

But today, we have had a brilliant time. Jamie had 3 seizures last Sunday so we couldn’t see him, but he certainly made up for it today. He smiled his beautiful enigmatic smile when we went to his flat and the staff said what a great time he was having and how happy he was. When Jamie is happy it makes me so happy! We went to the pub as usual. It was really busy and there was a family with 2 young children who were pretty noisy. Oh no, I thought, this is going to be a disaster, Jamie will get upset, not be able to cope and we’ll have to escort him out screaming and headbanging. How wrong was I!! Jamie was so so good, he ate his lunch beautifully, he didn’t headbang once and he was pretty relaxed considering the noise. And then a man came to sit at the table next to ours. Oh no, thought I, double trouble. But Jamie coped fine, he was as good as he could possibly be, apart from a really loud burp, which had me in hysterics!

So we left, without a single mishap or upset and I was so proud of Jamie. On the way to the sweetshop Andy told him what a good, good boy he was and he would have wagged his tail if he had one, he was so pleased with himself, it was lovely. We got him his usual sweets and then Jamie actually took a Mars bar from the shelf (Andy said he could he wasn’t just taking it). Now normally Jamie will never ever choose what he wants for himself, a choice is made only when prompted by me or Andy taking something and giving it to him. If he wants it he takes it, if not it gets pushed away. I was absolutely speechless, he has never been able to make a choice like that let alone take something for himself. Later Andy told me the Mars bar had fallen into the wrong place. Now in Jamie’s world, everything has to be in the right place and Andy thinks he took the Mars bar to put it back, but then once he had touched it he could have it. Whatever the reason, it could be a break through in helping Jamie to develop choices.

It was a lovely day, I love to see my beautiful son so happy and enjoy himself so much. The week before he had his last seizures, Sophie (Jamie’s sister) and Owen (her fiance) came to see him with us and he was really good then as well – and that was even more remarkable because he was building up to his seizures and this is normally such a difficult time for him, he must feel awful in the time leading up to a seizure and his behaviour deteriorates significantly.

In the car on the way home, Andy and I always discuss our day with Jamie. Today was no exception, it was lovely to have such lovely, happy  thoughts about our day. As Andy says, these days are to be treasured and we will remember them then our days out with Jamie are not so positive. We talked today about how Jamie defies so many of the myths surrounding autism. Eye contact for example – Jamie exhibits significant lack of eye contact with almost everyone, including me! But with Andy, and Sophie quite often, his eye contact is remarkable – he spontaneously looks up at Any all the time through lunch (they sit opposite each other). Andy, who reads Jamie so well, says it is like he is asking ‘Am I doing this ok? Is this right? ‘. It is just so wonderful to watch. Jamie looks at Andy when Andy is not even looking at him, as well as actually making contact with each other. He also has an amazing theory of mind – Simon Baron Cohen’s famous theory that people with autism do not understand that other people have thoughts and beliefs that are different from their own. But Jamie , in his own way, does understand that people are different from him, he sometimes plays jokes on Andy – he know that Andy will find it funny. My thinking on this – I think Jamie does not understand why people don’t understand him, why don’t we know what he is saying when he babbles? Think this is my Phd topic!!

Anyway, I feel so happy for Jamie that he is settled and happy. Long may it last.

Thanks for reading.

Jan Mather

Jamie’s Sundays – 27th November

It’s almost a month since I last wrote. Jamie has been quite amazing, even though he suffered badly from a day of seiures, which meant we had to miss our Sunday visit. The seizures were on a Saturday, three of them, starting at the usual time, while Jamie was doing his bath routine. The first one lasted 2 minutes 40 seconds, then Jamie was helped to his bed to sleep. When he woke up, he went straight into another seizure, lasting over 4 minutes. Poor boy, then sleep again and when he woke up the last seizure, which lasted 3 minutes. It is a long time to have a seizure when your breathing is disrupted. Jamie’s last seizure was about 9 pm and Andy and I made the decision not to go to see him on the following day. We felt he would be quite disorientated and spaced out and would be much better having a very quiet day chilling out in his flat. It is always difficult to make these decisions and I do hate not seeing him. But I also think he understands why we don’t go sometimes – he seems to accept it anyway.

Our visit last Sunday was really interesting – and very positive. Jamie was really good, in a very happy mood and obviously looking forward to going out with us. We went to the pub as usual. The kind staff there had reserved us a table near the Christmas tree. Jamie likes it because of the lights and shiny decorations. The staff really do their utmost to help us and make Jamie’s day a good one, they are truly amazing. The previous time we went, our usual tables were all occupied – we were just choosing another when the couple at the ‘Christmas tree table’, who are also Sunday morning regulars (they come in for coffee) asked us to take their table and they would move. They have done this before, but I always think how kind these people are. My mind always compares them to those people who are the opposite – who make rude comments and remove themselves as far as possible from us. It is interesting how different people are.

We sat down, and Jamie was really enjoying his lunch when a family came in with small kids and sat down fairly close to us. Oh no, I thought, this might be a real problem. Sure enough the kids were young and noisy – a couple of toddlers and a younger child in a highchair. Jamie was looking at them out of the corners of his eyes, as he does when he doesn’t want anyone to know he is watching. I could he him becoming more and more anxious. Then suddenly he erupted into headbanging and screaming. The child who had been quite noisy started crying really loudly, adding to Jamie’s distress. Oh no, here we go I thought. Andy and I will have to drag Jamie out and he’ll miss his lunch and be upset, my heart sank. I said to Andy, we’ll have to go, but he came and sat in my chair – I had stood up by then and we quietly tried to calm him down. Then I remember thinking, I’m not going to take Jamie out, take him from his lunch – that is like a punishment and he’s done nothing wrong, except be autistic! Anyway, he calmed down  – I must have known this time it was different. He actually stopped himself from headbanging and was able to sit quietly and finish his lunch. Now I had put myself between him and the family with the noisy (by this time really screaming) kids. Perhaps he was able to control himself because he couldn’t see them and knew I was protecting him. I don’t know, all I know is that it worked. I stayed standing by his side for a while and then sat down again. Lunch was finished without any other trouble.

This was the first time Jamie has ever managed to pull himself back from a major meltdown. However uncomfortable it is for other people – this is a fact of life – it is a fact or our lives. Jamie doesn’t have a massive bump on his forehead for any other reason than the fact that he hits his head. It’s horrible but you cannot ignore it. It was interesting though because he wants Andy to react to him. When he headbangs and is angry, he tries to grab Andy  – it is Andy he wants. There is something there in their relationship that I don’t understand yet, maybe never will, but it is interesting. Why does he want interaction with Andy when other people  (including me at times) are pushed away, sometimes quite strongly? I wish i knew what was in his head.

Of course Jamie was told what a brilliant boy he had been – he had his treats as normal. If we had had to take him out of the pub, however harsh it may seem, he would not get his treats. This is the only way we can change Jamie’s behaviour and help him lead a more normal life. Anyway, he really really did know that he had been very good and was oh so obviously pleased with himself. It made me smile so much.

We have begun extending our time with Jamie again, so after lunch we go for a little drive in the car  – always the same way at the moment. we stop and Andy goes to look at the tropical/marine fish shop (his passion) and Jamie and I people watch – he loves it. But we have stopped the headbanging in the car, so are able to just push the boundaries a little bit. If the headbanging comes back we will think again. It’s a juggle, always trying to stay ahead of the game! Sometimes we win, sometimes we lose, but if we are helping Jamie to have a better life, it is so worth it!!

I saw my dear friend Noriko Ogawa this week – she gave me a lovely photo from Jamie’s concerts in Japan – here is a link if you want to have a look at her work. She is truly amazing.


Thanks for reading xx

We all love you Jamie!

Jamie’s Sundays – 15th September

The bond between brother and sister - so strong.

The bond between brother and sister – so strong.

We have had a wonderful day with Jamie, he was just the sweetest and loveliest young man. When he is like this, his personality shines through and I see the beautiful person there is locked away inside his autistic brain. Life must be so very hard for him – he must have ideas and thoughts going around his head all the time – but he can never communicate them and possibly never understand them.

I didn’t write this blog last week – we had just started out on the 2 hour drive to see Jamie when I got the dreaded phone call. Jamie had a seizure, he was ok but it lasted 4 minutes and he was being helped to bed to sleep  as the manager phoned. When I get that call, I just feel dreadful. It’s hard to put your finger on how you feel – but helpless, certainly. So often I want to be with Jamie, to support him in his routines, cook for him, clean him up, play with him, give him what he wants, but it is not possible. I want to treat him like a child and he is not – he is an adult, Anyway we knew it was useless to carry on our journey – Jamie would sleep until the afternoon, but if he saw us he would want to go out and he was just not well enough. He is always pretty unsteady on his feet when he has had a seizure. Thank goodness we didn’t go, Jamie had another seizure as soon as he woke, went back to sleep and then had another one when he woke in the evening. It seems as if he can’t come out of the seizure fully if he just has one. His seizures are nearly always at the stage when the brain is changing from a sleeping state to a waking state – the neurologist told us this was quite common. Jamie seems to get stuck in this cycle sometimes, it must be very frightening and horrible for him. 9 minutes of fitting and being deprived of oxygen in one day is not good – not good at all. I wish we could do more to stop them.

Jamie recovered really well the next day though – he was happy, settled and not so anxious. Suddenly his life seems better and if he is happy, I’m happy! When I rang to see how he was on Tuesday, his carer told me he had spent to whole day laughing – in fact laughing so much he nearly fell over!!! It reminded me of when he was young; we had periods of time, sometimes lasting for weeks when he would laugh a lot, but also times when he would just cry and cry and cry – there was no reason for this that I could see.  No obvious pain or discomfort, no neglect or abuse, but just constant crying. It was awful, just horrible. But I have since learnt that other autistic children have done the same. Almost like getting stuck in an emotion and not being able to come out of that emotional state.

So this Sunday – Jamie was so good, even though at the pub a family with 2 young children arrived halfway through our lunch. Jamie finds the noise and unpredictability of young children really, really hard to deal with. He was immediately anxious and obviously unsettled. But he coped really well. We gave him the favourite parts of his lunch – the onion rings!!! and he did not finish his lasagne, but he had eaten pretty well. Andy and I calmly stood up and let Jamie let us know whether he wanted to go or not. He does this by standing up himself if he is ready. He did this and we left without any fuss – no headbanging or upset. I was so very proud of him for his control and trust in us to keep him safe. We tell him that all the time, I’m sure it makes a difference to him that he knows we understand how much he needs us to protect him.

We went straight back to his home today, we just wanted to avoid any upset and Jamie did not seem to be totally himself after lunch, perhaps his anxiety levels were taking time to come back to normal. But it was really interesting because when we got back to his flat Jamie was very happy that we had bought him some wax crayons and took them up to colour on his paper. After meals Jamie gets 3 pieces of paper to colour and tear. He gets these whatever, they are not a reward for behaviour, they are just part of his routine. When he was younger Jamie would tear paper – any paper and wherever he was he would tear paper. It was his way of shutting out the world, but it very quickly became an obsession and was out of control. So Andy and I would ban any paper from him. This sounds really harsh, but it was the only way to control it, otherwise his behaviour would just escalate into a frenzy and uncontrollable anxiety. At school he was allowed a ‘flappy’ – a laminated piece of paper that he could not tear – as a reward for doing his work, but this was limited to one minute. But Jamie accepted this and quickly started to hand it over himself after one minute had gone.  It was weird that these rigid and seemingly cruel restrictions actually brought him out and Jamie no longer craved paper to tear, he no longer was grabbing things when we were out, no longer getting upset when we had to stop him. He was not limited by his obsession and so we could start to do more things with him again.

There was one time when he was at the doctors, wanted to flap and tear all their leaflets, was stopped from doing so and so promptly stripped off all his clothes. Now that is not really a good thing to do in public when you are 19 years old. Instead of helping, the receptionist called the police. Their station was only just over the road – they sent 4 police cars to deal with him! Luckily his wonderful carer had managed to get him into the toilet and called for back up which arrived promptly and Jamie was helped out with suitable covering round him. But this situation would have been so different without the back-up of his support staff. If the police had been allowed near him, Jamie would have kicked off in a major way, he would have reacted totally understandably by screaming, headbanging and biting. If you don’t know how to handle him he could have hurt someone. Then he would be sectioned – and it would be just awful because we don’t have an awful lot of jurisdiction over his care now that he is an adult. Doesn’t bear thinking about really.

Anyway, those days are over now that he is settled and happy in his flat and has people to care for him who love him and want to make his life better. It certainly makes me feel hopeful for his future.

I love you Jamie, I still miss you every day, just as I miss my daughter, but if you are happy it makes it easier to cope with. Long may it last my beautiful son!

Jan Mather

Jamie’s Sundays – 7th July

Well, today was a total washout really, certainly as far as Jamie is concerned. We drove the 2 hour journey as usual, in fact it was lovely because it was so hot we had the roof down on my car, makes it sound very posh, but it is over 13 years old and has done more than 190,000 miles. Still goes amazingly though!

Anyway I am digressing. When we arrived the manager met us at the door to tell us poor Jamie had had a sezure that morning. He was doing his normal morning routine  and as usual really the seizure occurred as he was in the bath. This is often the pattern with his seizures. The staff are always really vigilant and carful at this time, and especially so on days like this when he has not slept at all well. Because Jamie adheres to his routines so strongly, if he sees us he wants us to take him out and nothing will stop him. After a seizure he is not well enough to move so we can’t even go to see him sleeping in case he wakes and sees us. It feels awful but we have to think of him. 

Jamie’s seizures are horrible to watch, and although I find it really upsetting I’ll describe them so you can get a picture of what it is like. He starts to become a bit agitated and turns his head round to the right. (apparently this is a sign of a focal seizure that starts in the frontal lobe of the brain). He moves his legs and becomes really vacant and unresponsive, he is virtually unconscious by this stage. He needs to be supported as he just drops like a stone sometimes, and if he is in the bath he can never be left because he would just slip under the water and he is a dead weight during a seizure. While he is having the seizure he gasps for air and often his lips turn very blue because he cannot get enough oxygen into his body. I have over the years fought very hard to get him some portable oxygen which would help him, not during the seizure but help to re-oxygenate him when he comes round. Unfortunately no-one wants to know and they say it won’t help, I think this may be a cop-out because they do not want the expense – am I cynical? Probably but I have learnt this from looking after Jamie for 21 years. 

Jamie’s seizures are termed tonic-clonic focal seizures (they used to be called grand-mal seizures). The focal bit comes from the fact that they begin somewhere in the frontal lobe. Of course if Jamie could tolerate a EEG (electroencephalogram), we could see more where activity in his brain was abnormal. They tried this in hospital after his first seizure. Jamie sat there very happily munching on crisps while they attached all the electrodes to his head. When they had finished and were just about to begin recording Jamie decided he had sat there long enough, ripped them all out and disappeared out of the room as fast as he could! I don’t think they’ll try that again very quickly!

Anyway, Jamie’s seizure lasts generally for an average of about 3-4 minutes, during which time he is jerking a lot and gasping for air. Quite a few have gone on longer – an ambulance is called if they last more than 5 minutes, although he generally comes out of it on his own. It is of course really distressing to watch and the only thing you can do is support him as best you can. When he comes out of it, Jamie is really fuzzy-headed, he is totally unfocused and can’t really function at all. He is often incontinent during a seizure and so he is cleaned up and changed before being helped to bed where he will sleep, sometimes for 6-7 hours.

So that is what it is like for Jamie when he has a seizure – not nice, not pleasant at all for him, and difficult for his loved ones and carers to cope with too. We know that seizures are dangerous, that a seizure could kill him. We have to live with this. I know personally of one lad who died from having a seizure during the night and I have fought very, very hard to make sure Jamie has the level of care he needs to make sure he is kept safe night and day. He has alarms and monitors, staff outside his flat at all times so he is probably as safe as can be.

Recently Jamie has started having clusters of seizures – he comes out of one, sleeps, wakes and goes straight into another. This leaves him absolutely washed out and drained of energy. He has sometimes had three big seizures in one day. Andy and I have often discussed why this should be like this. Although the seizures are still tonic-clonic, the first one is smaller than his usual ones. Does this mean that he doesn’t ‘discharge’ all the anormal electical activity in his brain? Does this leave traces of abnormal activity that trigger further seizures? I think I’ll research this further. 

Back to Sunday – Andy and I still discussed Jamie on our way home again. We talked about how, when we come to take him out, he always takes his carer’s hand as he leaves his flat. Now I thought he wanted the carer to come with us to lunch, but Andy reckons he wants them out of his flat  – it is his space and they have finished their job and don’t belong there anymore. I think I know who is right here (Andy)  – it is just such typical behaviour from Jamie – I also get pushed out of the flat when we return from lunch. we no longer belong in his flat and his day has moved on to another section where we have no part. It seems very cold and clinical, but it is the one place where Jamie has his world, why should we not respect how he wants it to be?

I have learnt over the years never to expect the things from Jamie that we often want from our children. He hates cuddles and although he will put his head forward for a kiss sometimes it is not something he understands or even wants. But he shows how he loves us in extremely subtle ways – a look, taking your hand, a smile  – that and having his head rubbed non-stop!!

So it was not a particularly good Sunday, but we are as philosophical as we can be – the bad comes with the good. Next week might be wonderful, who knows!

Jan Mather