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Jamie’s Sundays – 14th July

It’s taken me a while to write this post, I don’t know why. Especially when Jamie was so good during his Sunday outing. He was dressed and ready when we arrived at his home and gave the most beautiful smile when he saw us. The temperature was about 24 C already but he still insists on wearing his winter coat and backpack – they are security for him and have to be worn  whatever the weather. In winter he won’t wear anything warmer than a T- shirt – that is what he always wears and he just cannot change it. This started when he was about 7 or 8 years old, when he realised he could make choices, and he has never managed to change his routine. It’s not for want of trying by everone around him!!

He had a wonderful day and was really, really settled and happy. This was quite strange in itself because he had been unsettled in the morning before we arrived. Does Jamie worry that we won’t come – we had to miss seeing him the week before because of his seizure. Does he know it is Sunday and the day Mum and Andy comne to see him? When he was younger and at school,  there was one occasion when we had to go visit him on a Saturday instead of Sunday. I told the staff we would be there at about 1.30 pm. Come Saturday, the staff had forgotten – understandable  – we always went on Sunday. Jamie though, at 1.30 went and asked to get his coat and bag and was ready for when we arrived – he never normally does this and has never done it since. Did he know? Does he know far more about  time, days, weeks, years than we realise? It fascinates me what goes on in his head.

Anway, we had a really good time. As usual I did not want to leave him, but I upset Jamie if I stay in his flat after we have got back. He sometimes pushes us out of the door. It is his space and we don’t really belong there. Sometimes I just want to be with him, to bath him, play with him. He doesn’t want any of these things, and rightly so really. He is a young man and needs to make his own way in life. I am here to watch over him, to ensure he is looked after properly and that he has the best quality of life. Andy is here to protect him, fight his battles for him that he cannot possibly do, and be his ‘best-mate’!! His sister is his special person  – who he reacts with in a totally different way. He loves to see her when she visits.

Having left this post until now I am able to write that unfortunately Jamie had another seizure yesterday, the second one in under 2 weeks. He doesn’t seem to be having clusters anymore, i.e. 3 in one day, but they are more frequent. His medication is constantly reviewed and we are trying so hard to find the right one for him at the right dose. No success at the moment though! It is Jamie’s review soon and we will ceratinly be discussing these issues a lot.

Jamie has recovered today and is feeling much better having done a massive poo on the toilet. At last he is learning to use the toilet to defecate and not do it in bed and them smear it everywhere. This is a constant problem with people who have the problems Jamie has – apart from the mess, it leads to infections. Jamie used to have a constant ear infection because he poked his dirty fingers in his ears. However hard we tried to keep them clean he was anal poking so much it was nigh on impossible. How to you tell someone not to do something when they don’t respond? Did he understand? I don’t know, but we got there eventually – he doesn’t do it so much anymore, his hands are cleaner – he hasn’t had an ear infection for years. Success!!

I am so looking forward to seeing my beloved boy tomorrow.

Jan Mather

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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

Jamie’s Sundays – 30th June

Well today we had a really lovely and interesting day with Jamie. When we arrived at his flat, Jamie was sitting on his bed, having taken all his clothes off. He does this when he is stressed or when he does not want to do something and feels safer sitting like this on his bed. You can’t do anything except wait for him to get dressed again, if he is asked to dress before he is ready, then he will erupt into headbanging.

But Jamie was really happy to see us – we had a beautiful smile. We waited patiently and quietly and talked to him gently, not too much because we have learnt that it is better to be quiet and patient than try too hard to encourage him. We tell him that we can go out for dinner, to his pub, but first he needs to put his clothes on. Then we tell him ‘if you are too long, the pub might shut before we can have our lunch’. Not really a white lie – the pub will shut sometime!! The thing is though, if we are too late getting there, it can get fairly crowded and Jamie can’t cope so well. We can’t turn up and then leave without having our lunch becaue he doesn’t understand why we would go straight out, and it confuses him even more. Jamie was really good though, he didn’t get upset and after a little while he went to get his clothes and put them on without any problems – and it was so funny because he was ‘chatting’ to Andy in his babble-speak and giving him really good eye contact at the same time. I thought to myself – he is saying ‘all right then, I know we will have a good time’.

What we don’t know is why he took his clothes off in the first place – there could have been a number of triggers – there is a new person in the flat opposite Jamie’s – perhaps this has unsettled him a bit; new support staff may also have upset him – this is a particular trigger that often causes him great upset and understandably so, but there is no way round this problem. We have to help Jamie cope with support workers new to him and help him to understand that they are part of his life and will help him, not hurt him.

Anyway, off to lunch we went and he was very good in the car – enjoyed the drive and watched everything carefully out of the window. But during lunch he was fairly anxious and quite unsettled. There were various things that were different which might have pushed up his anziety levels. There were obviously high to start with because of the clothes issue. One anxious moment was that his onion rings – one of his very favourite foods, were served on a different plate. This was quite a worry for him, but he coped well and ate all his lunch without any SIB (self-injurious behaviour). I think he was really good at keeing control of his anxiety levels.

After lunch we went to the sweet shop for his Mars Bar and he was really good – even chose a packet of crisps for later (I know he gets a lot of junk food on Sundays, but the rest of the week he eats really healthily and we use his love of crisps and Mars bar to encourage his good behaviour). He seemed to be very happy and more relaxed, so we risked a stop for petrol. This is often a difficult time for Jamie, and his good behaviour was rewarded with a small Crunchie bar. We passed it to him for him to open but it was not easy and he struggled a lot with trying to open it. A difficult time – do we take it and open it for him? This would be likely to trigger a major outburst because he would think we were taking it away. So we waited and he eventiually  managed it  – we told him what a clever, good boy he was. Oh dear – I should have known better, he just errupted into a major headbanging and hand-biting episode, he was banging his head on the side of the car window so hard I could see the window moving as I looked into the mirror!

Andy and I just ignored him! Can you imagine ignoring someone banging their head so hard on the car window that it looks as if they may break it? It’s really hard to do, I want to calm him down by talking to him like I do my horses, but it just makes him worse. You have to go against all your natural instinct for protection and love. We turned the radio off  and I just carried on driving, Andy just totally ignored him. The funny thing was he stopped really pretty quickly and was just fine again. So why did it happen? What was the trigger? Andy and I stayed really quiet on the way home, but the rest of the trip was uneventful. But on the drive back to our house (it takes 2 hours) we talked and talked about why he had behaved like that, and came to the conclusion that he had found it stressful that the Crunchie bar would not open and then our praise of him, and ‘pushed’ his emotional level too high. We overreact on an emotional level which is too much for Jamie’s sensitive equilibrium. Andy and I think that Jamie finds anything that upsets his emotional stability to be really difficult to cope with.

So today was a funny mix of good and bad – just like most of our days with Jamie! Steps forwards and steps back – that’s how it goes.

 

Jamie’s Sundays – 15th June (Father’s Day)

Father’s Day and Andy got a very special card from Jamie. The wording inside – ‘thank you for everything you do for me’. Jamie didn’t write this or have anything to do with it really, except the scribble at the bottom, but the sentiment tells us exactly what Jamie’s carers and the other staff feel about what we try to do for him. It does make you feel reassured – I always fight that guilt that my child (even though he is a grown man!) is too much for me to cope with 24/7. Actually, when I look at his card, the scribble at the bottom that Jamie has done definitely looks like ‘Andy’ – well it does to me!

Today, Jamie was very anxious, even before we left his home to drive to lunch. Half way there he started banging his head while we were driving. Now this is strange because he loves going out in his car and he loves going to lunch, so why start banging his head, when he knows that the consequences are that he doesn’t get the things he likes most? There was no trigger that we could see for his behaviour.

I pulled over into a lay-by and Jamie was getting really angry. He wanted Andy to rub the back of his head (his favourite thing!) and he also wanted Andy to hold him. But Andy will not do these things while he is banging so much, we don’t want to positively reinforce the bad behaviour, but only the good behaviour, so if he headbangs or tries to grab us, or bite, then we withdraw contact and wait it out.

It was pretty obvious that Jamie was not going to stop easily and so Andy got out of the car. I had to let him out because of the child locks. Andy walked away from the rear of the car, I got back into the driver’s seat. Weird – Jamie immediately stopped and was quiet. He watched Andy intently through the rear window. Andy came back after a while and Jamie had totally calmed down. Was he worried that Andy would go away and not gome back? Did the act of Andy getting out of the car bring him out of the cycle of headbanging? I don’t know but it certainly worked!!

We carried on, wholly prepared for Jamie being too unsettled to go to the pub for lunch, but he was pretty good really, Still fairly anxious, which we could see by the look in his face., but he ate his lunch beautifully.

Another thing that interested me was that Jamie always eats Andy’s onion rings. Every week we have the same things to eat because this is how Jamie copes with having lunch in a pub. Andy always gives Jamie his onion rings and today was no exception. But one of the rings was not a proper ring – it was half a circle, but elongated into a curved rope shape! Jamie could not recognise this as an onion ring and he refused it by pushing Andy’s fork away. Luckily he didn’t get upset though and he ate the others fine. I was surprised that the shape was enough for him to not recognise his favourite food and even more so that if he did know it was an onion ring he couldn’t accept it becase of it’s shape. The autism won out over his greediness! – interesting. I would love to know what he is thinking.

Today Jamie talked to us in his own ‘babble-speak’  all the way to lunch and most noticeably walking from the car to the pub. When he does this it is very distinct from his usual babble and has definite inflections similar to sentence structure. I wish I knew what he is saying. Sometimes this babble-speak is accompanied by really strong eye contact with Andy – but he doesn’t do it to anyone else. We are always wary and pay special attention when he does this in case anything  is wrong in his life and he is trying to tell us.

There is some research I heard about where researchers have investigated the brain areas active in people who are mute. They have found similarities between people who don’t speak and people who do speak in specific areas of the brain associated with speech. Are mute people like Jamie actually talking in their heads but not actually saying the words? I shall find out more and put a synopsis on here (and a full reference)  because Andy and I am sure that Jamie thinks he is communicating with us and he probably wonders why on earth we have no understanding of what he is telling us – aspects of Theory of Mind here!

Not a bad Father’s Day though – certainly an interesting one!

Jan Mather

Jamie’s Sundays – 9th June

Our visit with Jamie was as ever a mix of wonderful and difficult. We picked him up from his home as usual and had a quick chat with his support workers – he had been fine that morning. His face when he sees us is just lovely – he knows what it means when we arrive and his is happy.

While we were in the car and driving to lunch, Jamie gave Andy the most amazing look – I have never seen him do anything like this before. It was totally spontaneous and I was lucky enough to catch him in the mirror. It was a look accompanied with a beautiful smile – a look of pure love. Andy’s comment was ‘no amount of money would buy that’.  How special is that feeling?

BUT….. during his lunch Jamie was fairly anxious, he was pretty good though and ate well. After lunch we went as usual to the sweet shop so Jamie could choose something. He has a Mars Bar (his absolute favourite)  as a treat for behaving well and can choose something else to take back home  with him. He chose a crisp packet but decided to open them straight away. After he had eaten them he wanted to flap the packet. Jamie’s total fixation with paper means that everything is used as a ‘flappy’. Crips packets are ideal because they make a nice noise as well. But we don’t let himn flap paper because it winds him up and up until he blows and we have a major eruption. So Andy asked Jamie to give it to him, however Jamie was having none of it, even though he knows that this is not good behaviour. So Andy in the end had to take the packet from him and Jamie just started headbanging and biting his hand – he was very cross.

Andy, who was sitting in the back of the car with Jamie, ignored the behaviour, crossed his arms and pretended to be cross! Jamie seemed quite perplexed and stopped his outburst really quickly! He wanted Andy to rub his head (his favourite thing in the whole world is to have the back of his head rubbed!).

We found Jamie’s behaviour to be really interesting today – his awareness of his relationship with Andy seemed to be on a different level. Does he see Andy (his stepdad)  as more of a special friend than a part of his family. He definitely behaves differently towards Andy than he does towards me – apart from anything else, Jamie’s eye contact with Andy is just so different – he really looks at him and holds a gaze. This does not happen with anyone else apart from to a lessor extent with his sister, certainly not with me.

Has Jamie’s development taken a step forward and he is now at a stage where he is able to recognise that people are different and he feels differently towards them? I mean, not just that he does treat people differently, because we know this. People have always had very special roles in his life – Andy and I have always told him we are there to keep him safe and to look after him. We think that he knows this is our role and we try to reduce his anxieties as much as possible. Does Jamie now care that Andy is (pretends to be!) cross with him and does it affect his behaviour?

It is such an interesting development this, and really the reason why I started this blog – I suddenly see changes in my boy, it is truly wonderful.I want to record these changes and share them with others who may find them useful and interesting .

Sundays with Jamie

In this blog I will be chatting about the behavioural difficulties we deal with on our Sundays out with Jamie and what we think about them .

Why does he do these things, when they cause him such pain and distress?

What triggers these behaviours?

Whether we find answers or not, our thoughts are recorded and remembered in the hope that one day Jamie’s world will be a better place for him and he will live at peace.