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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!

We had such a strange and odd time with Jamie last Sunday. Both Andy and I were tired – we had been to Blackpool on Friday – 6 hours of driving and a busy day. Then animals to do on Saturday and outside jobs that need energy; I was fairly knackered before we even got into the car for the 2 hour drive to Jamie’s home. It’s a shame he can’t be closer to us, but there is nowhere suitable for him near to here, his needs are too great – he needs such a high level of care. Also where he is is roughly  halfway between here and London and so it is better for Jamie’s dad and Sophie when they visit. In an ideal world, I would have him at home with me, I would have money so I didn’t have to work and I would have time and help to look after him myself. But it is not an ideal world, I have to work, help and support is virtually non-existent and since North Yorkshire want nothing to do with me and Jamie we would get even less and certainly not what we are entitled to. It’s not the best option for Jamie, and will be even less so as I get older and more senile!

Anyway, when we arrived we were let into the house and met by the high-functioning autistic girl downstairs, who told us ‘Jamie not well’. Well we could hear he was not well, Jamie was upset. That was putting it mildly! Jamie was noisy – he makes a strange noise when he is upset, it is almost like a growl – a cross between a growl and a shriek. Jamie was banging his head – we could hear the thumps as we walked up the stairs. Jamie had stripped all his clothes off and was standing naked in his flat – we could see him when we went in. My heart sank. When he is like this it brings back all the baggage of trying to control his outbursts when he lived at home and I was virtually on my own. Sophie was a tower of strength then, and Jamie was small enough for me to just about restrain him from doing serious harm. So we managed, but it was hard sometimes.

Back to the present – what was upsetting Jamie? That was my first thought. What is wrong with him? His carer told us that he had been upset all morning, but they did not know why. Sometimes it is impossible to tell why Jamie feels bad – he cannot communicate in any way except by banging his head and taking his clothes off. Poor, poor boy – through his life all our efforts have been directed at helping him communicate, – at school he used the PECS system – Picture Exchange Communication System, Here, objects, photos and eventually symbols are used to communicate a person’s wants and needs so that no speech is needed. It has been used to help people with autism to communicate and is pivotal in the TEACCH method of supporting people with autism.  There has been a lot of success in helping children using this programme (http://www.teacch.com/) and Jamie used this all through his education. But to no avail, he still does not understand the concept of ‘if I give you this, it tells you what I want’. Even ‘if I give you this symbol of a biscuit you will give me a real biscuit’. But at his home they still work at this, and he is beginning to understand ‘if I give you this plastic biscuit, you will give me a real one’. It is progress and also he uses coloured squares to show which colour paint he wants to use. Now that is real progress – there is so much processing going on for him to do that, I’m well impressed.

Anyway, I have digressed! We walk in on Jamie, headbanging so hard, naked and clearly extremely upset. He sees us, changes to handbiting and then stops and quietens, He goes and sits on his bed – this is what he does when he takes his clothes off. It kind of tells people that he does not want to do anything. But he was quiet and much more relaxed. I go and sit on the bed with him and Andy comes in and sits on the floor. We talk to him really quietly  – Andy much more than me. It is amazing to watch Jamie – he doesn’t take his eyes off Andy. Why?? He rarely looks at me – eye contact is just not something he does, so why can he cope with looking at Andy. Andy said afterwards that his pupils were huge. This is something I have noticed a lot – even in quite bright light Jamie’s pupils can be huge. At one time I wanted this to be the focus of my PhD – there is research but I will need to look at it in a lot more detail.

We sat with Jamie for about 1/2 an hour, telling him all the time, that he could come out with us for his lunch, but if he didn’t want to that was fine and it was his choice. He was quiet and listening all the time  – I kept rubbing the back of his head which is his favourite thing. Eventually he got the box with his clothes and put on the ones he wanted. No fuss, no bother, just some smiles. But I noticed Jamie was shaking – I have never seen this before. I thought he might have been a bit cold, but he wasn’t. He slowly got dressed and we went to get his coat and bag. Everything took ages and Jamie seemed very unsteady and shaky, however he seemed to be much happier and settled and came with us without any problems.

We went for our usual lunch – we had to sit at a different table – this used to be a major problem, but nowadays Jamie does not mind these things – how he has grown up! Throughout lunch, Jamie was really, really good. He ate everything , apart from his salad and we no longer push him to eat this – if he wants to he will eat it, if he doesn’t he won’t  – the important thing is he can choose. But Jamie struggled with some things – he couldn’t seem to use his fork properly and using the knife was totally out of the question. It was almost as if he had forgotten how to put the food onto the fork. Weird! Then when he had finished eating, he would not stand up – it was strangely as if he had forgotten he had to get up, or he was scared that something would happen if he stood up. I thought – oh no he is going to have a seizure – I have never seen him like this before and it was really worrying. Jamie had been shaking a bit at the table as well, another sign that all was not well.

Eventually Jamie stood up and we went out – he got his usual treat of a Mars Bar and we went straight back to his home. Both Andy and I were really worried that he was heading for a seizure, but he didn’t and was quite settled, even though he seemed really ‘spaced out’ and he couldn’t seem to make any sense of anything in the world. We got back without incident and he settled down well. I have rung a few times this week, he has been the same really, very unsettled, unsteady, not eating very well. Something is going on with him, he is not well, or he is heading for a big seizure. No-one knows, all we can do is support him as best as we are able, give him paracetamol and ibuprofen in case he is in pain and hope he is ok. Oh I wish we could help you more Jamie.

I hope you are feeling better next Sunday  – my beautiful boy, you don’t deserve to be poorly. So many setbacks and so many difficulties in your life, and yet you try so hard. We all love you Jamie.

On a really, really positive note, Jamie’s cousin, his wonderful cousin has told me he wants to fundraise for Jamie’s home. Mikey, you are one in a million. It will be so exciting and I am looking forward to this – can’t do the cycling myself but I will support you as much as I am able.

Til next time


It is amazing how quickly Sundays come around and it’s time for our visit with Jamie. I so look forward to Sundays – I don’t feel complete without Jamie and Sophie, it always feels like something is missing when they are not around.

2 Sundays ago, we thought we were going to have a difficult time. When we arrived Jamie had obviously been upset that morning. His bump on his forehead where he hits it was red and sore. I though ‘oh no, Jamie looks like he is heading for a seizure’. Apparently he had been awake until about 4.30 am and was very anxious and unsettled.

I could see in his face how anxious he was, it seemed as if he didn’t want us there with him. In fact after a couple of minutes he got up from his table where he had been colouring and tearing his paper and went into his bedroom and promptly stripped off all his clothes. Oh no, I thought, he is going to get really upset and stressed. It was very funny, for the first time I ever remember he did not want Andy with him – he got pushed out of his flat . I sat on Jamie’s bed, by his side, and tried to keep him relaxed and calm. He was ok and we did not have the usual escalation into headbanging and hand-biting. In fact he even smiled and vocalised, suddenly he relaxed and started to put his clothes on. Thank goodness, I thought, he is ok after all.

Jamie put his clothes on really well, except his T-short (with long sleeves!!) went on back to front. I know Jamie noticed it, but he seemed unable to do anything about it – so I said to him ’round and round Jamie’. He knows this means his clothes are on back to front, but he still seemed unable to do anything to change the situation. He stood in front of his carer, who was an absolute saint. His carer stood there with his arms outstretched to Jamie and the palms of his hands upwards. And he stood and waited…………. and waited……………………………..and waited………………………….It was an age that we waited, and I spoilt it by trying to hurry him, so he started headbanging but it was just a very short outburst and then he stopped and turned his shirt round the right way. Jamie’s carer was brilliant, so patient and so caring for his welfare.

After that Jamie was happy to go for his lunch and although he seemed really spaced out he was so good. Sometimes he seemed unsteady on his feet too, as we returned to his home. I have no idea what was wrong with him, but we did expect a seizure was imminent. How wrong we were – when I rang in the week, Jamie was having a brilliant time, he was happy and relaxed and enjoying his outings. I was so pleased, especially because there had been a big incident in MacDonalds, where he was obviously anxious, didn’t want to get out of the car, When he did he rushed in and just wanted to grab all the paper. Then he got really upset and had to be taken out before he stripped his clothes off. I am convinced that MacDonalds is too noisy, filled with people (especially kids) and just too busy for him to cope with, so they staff are going to try taking him to a quieter one – watch this space!

Why Jamie was so unsettled that weekend I don’t know – perhaps he had a funny little seizure in the night or something. If only he could tell us how he is feeling and what he wants, his life would be so different.

So the next Sunday came along (last Sunday). Jamie was again quite unsettled when we arrived. The carer had not managed to bath him, he wouldn’t let her shave him properly, or wash his hair. You’ve probably guessed that she is new – Jamie knows exactly how to get round new members of staff, he is very clever!! Anyway, it took a while but he eventually decided he wanted to come out with us. He didn’t get upset or take his clothes off which was great, but he was playing with his paper and he couldn’t leave until it was finished.

We had a wonderful time with him at lunch, his behaviour was impeccable, he really enjoyed himself and we even managed to go somewhere that we used to go to before he started finding everything so difficult. I was really impressed with him and so proud. What a wonderful time we had!! When we got back Jamie was very happy and busy talking to Andy in ‘Jamie speak’. I’m sure he thinks we should be able to understand what he is saying!!

Sometimes I really miss you Jamie, I wish I could hug you, but you hate me doing that, I wish I could make you happy always, you are a grown man now but  I wish I could bath you, watch videos with you, watch you go to sleep. You are so precious to me. Always in my thoughts …..


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

I haven’t written Jamie’s Blog for a while – various ‘things’ have been happening, for once not really concerning Jamie so much, My mind has not really been focused on anything like writing blogs or making the world a better place. Andy has been in and out of hospital for the last few weeks. He had a tumour on his neck – luckily benign, but bad enough. It is called Warthin’s tumour – a rare tumour caused by smoking or exposure to chemicals. Now Andy works in a chemical lab and he smokes, so it is a double whammy for him. The lump suddenly started to get bigger and bigger so we knew we had to do something about it. He wasn’t well either. But now it is gone and things can get back to normal. In the meantime I tried  – I needed to continue working – I can’t take time off in my job very easily. Now Andy is recovering from the operation and we can get back to our Jamie campaign!

It was really interesting on the Sunday before Andy went to hospital, because Andy’s tumour was pretty huge and Jamie must have noticed it because when we picked him up and went to get into his car, Andy rubbed his ‘lump’ and I noticed Jamie immediately rubbed his neck in the exact same place. Now, that might be coincidence, but there are many of these moments, when Jamie does something that shows his intelligence and observance and I never give him the benfit of the doubt. This time I am going to – I saw the look on his face! Andy says he was thinking – ‘why haven’t I got a lump on my neck’! I think he was thinking –  ‘Andy is hurt, poor Andy’. I don’t know who is right and it doesn’t really matter. What matters is that Jamie’s development continues to mature and change and I am proud of him.

On a downside, Jamie had a really bad day on Monday 12th August. He had 3 seizures on one day – again! Not just little seizures, but massive big 4 – 5 minutes of fitting and not breathing properly. He recovered well, but was quite spaced out for a couple of days. We knew it was coming, because on Sunday he was very slow to respond to anything and he looked as if he was having great difficulty in making sense of us, or anything really. SInce my last post he has had a few seizures and the specialist epileptic nurse has decided to increase one of his drugs back up. Now this is such a dichotomy because this is the drug  – it is called Keppra ( levetiracetam ) that seems to make Jamie’s anxieties and challenging behaviours worse. But he is definitely really ‘spaced out’ and not his usual self. What to do – limit the drug so his seizures are worse, and perhaps life threatening, or give him a drug that quite severely impacts on his quality of life? Sometimes I wish the decisions I have to make are not more complicated than what to have for supper. But life is never like that and you have to face the challenges thrown at you and just do the best you can.

But our Sundays continue to go well.  Sunday 1st September – yesterday, we even managed to go for a little detour driving back to Jamie’s home. We had prepared well for it and even so Andy was uncertain it was the right time  – just a feeling he said. But I wanted to try and so we went and had a look at the wind turbines – Jamie loves watching them. We didn’t stop the car but drove slowly past and then on past the fish shop that we used to go to a lot (Andy loves marine fish and has a beautiful tank at home). Jamie didn’t seem to mind at all and was really good, if a little anxious.  My thoughts here are that we can gradually increase our time with Jamie again. We used to stay out for longer, but it got shorter and shorter for a number of reasons. Primarily because Jamie can’t cope with going to a public toilet – if it is not somewhere he is familiar with, then it is a total no-go and we have soiled pants and trousers. It is just not something we can sort out in a hurry – it is going to take a lot of thought and preparation. In the meantime, Jamie’s behaviour was so bad that we couldn’t stay out any longer – he was headbanging so hard, and crashing about in the car so much that it was just turning our precious Sundays into a nightmare. Now he seems calmer and more settled we will try for longer outings. As usual it will be a situation where everything is totally flexible.

I am proud of my son though – proud of how he copes with his difficult and confusing life, proud that he always makes the best of things and most of all proud of the person I see inside – hidden by his autism. He has a truly beautiful personality – I want the world to see it!

Jan Mather

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

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