Yesterday was a day of disasters that actually turned out to be one of the best. It was Jamie’s long awaited appointment with a very eminent gastro-enterologist who I had carefully researched and selected 2 years ago. Yes, it’s taken that long for an appointment, not because he couldn’t see us, but because Jamie’s GP would not refer him – reasons – how will you and his carers cope with the visit to hospital!! Honestly I despair, I had to wait months to actually get to speak to the man (GP), and after we agreed he would do the referral it still took months for him to write the actual letter. It is very frustrating being the mum or dad (or sister, brother etc) of an adult with special needs as we have no voice, I couldn’t even get past the receptionist to speak with Jamie’s GP. But anyway, yesterday was the big day, everything started off well, I didn’t oversleep, all animals fed and watered by 7.30 and we left on time. We had a good drive to Barnsley – it normally takes 2 hours 20 mins, so 2 hours into the journey the phone rings. Jamie has had a seizure!! Oh no I thought, we won’t be able to go, so we discussed all the contingencies we could put in place to sort this out. But when Andy and I arrived, having stalled our journey a bit, he was already awake and sitting on his bed. As soon as he saw us, he put his clothes on -success. Although he was really groggy he was fine and so we set-off. We arrived in perfect time – about 3 minutes before his appointment which was supposed to be first in the clinic. Then everything went pear-shaped. We waited, and waited….waited and waited. Jamie became restless, so we asked and were moved to a tiny room which was really stuffy. And we waited and waited…..We asked a couple of times how long it would be – Jamie worked his way through his stash of sweets, carefully selected so each one took an age to get the wrapper off – Starbursts, they are great in this situation 🙂 He even looked like he was going to sleep at one stage 🙂 But then, after an hour of waiting!!!! Professor saw us. And it was worth every minute of the practice runs every Thursday, which entailed us driving down to Jamie’s, taking him to the hospital, sitting in the waiting room with snacks and driving back, not to mention the trials of the actual day. Not because he can wave a magic wand or make Jamie’s chronic constipation disappear but because he understood the problem and he cared, he really cared. I’m sure Jamie knew he was helping him, because he stood there as good as gold. I’m sure he was spaced out from his seizure, which helped us keep him calm. So we are starting with changes to his meds, and going to work out how we can make him more comfortable and safe, and possibly how to remove the concrete-like blockage in his bowels. I hope now we can help Jamie to be healthier, happier, and as Professor Saunders said, the circle of constipaton, self-harm and seizures may be broken. I’m sure Jamie is really tired today, but he deserves the best and I’m so proud of him. ❤ ❤ ❤
14th August 2016
It was, as always, lovely to see Jamie today – the highlight of my week and an increasing feeling of joy as he seems to be settling down after months of challenging behaviour, anxiety and poor health. Generally Jamie is headbanging much less – why? Well, mostly because we have insisted that he has a higher maintenance dose of laxative, so he is not getting the terrible impactions and constipation that was a daily feature of his life. I cannot imagine what the constant abdominal pain and discomfort must be like for him – no wonder he gets so upset, but trying to convince healthcare professionals is so hard. So many seem to have their own agenda and will not look at Jamie as an individual, who can react differently to other people, both behaviourally and physiologically.
When we arrived at his flat, Jamie was naked – as he so often is J. Normally when he sees us he puts his clothes on relatively quickly – he loves coming out with us in his car and having a picnic. It might seem boring to many, but Jamie loves his routine and the fact that we do the same thing each week, even down to him eating the same foods (at least he is eating!!) means he feels safe and protected and can really enjoy himself. Today, however, Jamie did not get dressed and he seemed to have quite a lot of back pain. Now, with Jamie, since he does not communicate in any way, we can only guess at what is wrong. But he was walking in a strange way, and one side of his back seemed to be troubling him. It may have been a problem with his kidneys, he has just had a urine infection. Or it could have been something totally different. We gave him some paracetamol and time to settle down. Although he did not want to get dressed, he did not really get upset or anxious. Just kept picking up his clothes and shoving them out of his flat. This is pretty much a major breakthrough as before this would always be a time when a major eruption of headbanging would start, distressing everyone, but most of all Jamie. Horrible to watch, but even more horrible for him to go through this.
We decided he probably didn’t want to come out today and his support worker went to get him some dinner. When it arrived – and it looked pretty yummy J, it went straight into the bin, along with is yoghurt for pudding! Oh well, Jamie, I guess that was not what you wanted!! Jamie then went and got his clothes, but he still wasn’t happy, so I got the basket of his underpants and he chose a different pair from them. (Jamie’s is given only 3 sets of clothes, because too much choice totally overwhelms him and he just cannot choose if he has a drawer full – it makes him terribly anxious and upset.) All his clothes go together in sets and woe betide us if we get them wrong – he knows which pants belong with which set, even if they are all the same colour! It is very important to him. Eventually he decided to dress and come out – major achievement, especially with very little upset and headbanging.
So we went on our usual jaunt – to the supermarket to get his picnic, then to the RSPB nature reserve to sit in the car park and eat it J Jamie loves this routine. The nature reserve has a wind turbine and he loves to watch it through the car’s glass roof. But he still won’t get out of the car and have a wander round. We don’t push it, if he doesn’t want to, he doesn’t have to, I won’t upset him on our Sundays, they are so precious and I always hope that one day he will want to get out, but if he doesn’t, then that’s fine too.
After he has eaten, we go back to his home. Because it is really quite late by now, we don’t go for our usual drive and when we get back to the site, Jamie is really reluctant to get out of the car – not entirely sure why. In these situations, we wait for a while – about 15-20 minutes, then Andy gets in the back seat of the car, on the other side to Jamie. He chats to him for a while, and holds his hand. Then he slowly sidles over, so Jamie is squashed more and more. Now Jamie does not like this, do he decides that he will be ok getting out of the car after all. We have found this is the way to do it with the least anxiety and fuss – another example of Andy’s careful analysis of situations and how the deal with them.
So now Jamie is out of the car and then stands there and refuses to come in. When we try to guide him, he gets upset and starts headbanging. So we wait…. And wait…… and wait…….. He is quite safe, the car park is not busy and he is safely in a corner. We stand around and Jamie is eyeing us from the corner of his eyes, as he does when he doesn’t want to be seen to be looking J Andy and I decide to start moving towards the building where his flat is. We walk some distance away – about 15 metres, then Andy drops the car keys on the floor and I drop his coat and rucksack on the ground – a little distance away from us. This is a useful ‘trick’ that we have learnt over time – from a support worker who was really empathic with Jamie. If something is dropped on the floor he will come and pick it up and hand it to you, as he knows it is not supposed to be there! Anyway, it did the trick and he came over, picked up the keys, coat and rucksack – the latter had to be put on. They are always worn, however warm it is! And he came with us, quite happily to his flat. I think this behaviour was because he wanted to go for a drive, but without the communication we don’t know for certain. We always monitor this type of behaviour carefully, making sure as far as we possibly can that all is right in Jamie’s world. He was back in his flat and happily stripping off his clothes before having a cup of tea and relaxing for the rest of the afternoon.
Jamie’s fairly unusual behaviour today could have been because we are getting to that time in his seizure cycle, when he begins to feel not so good. It must make him feel strange – he gets so anxious and easily upset, if only he could tell us what he feels like and how we could help him – but he can’t and so we guess most of the time, not always successfully!!
I have set up Sky for Jamie – he has loads of TV programmes, plus Sky sports and he is absolutely loving it, especially the Disney channel J I hope that it settles into a pleasurable thing for him to do in his flat but does not become too over-riding in his day-to-day life. There are always things to second-guess with Jamie and it is usually impossible to get it right!!!!!
We will follow up on Jamie’s backpain to see if we need to do any more for him.
Until next time.
Hello everyone, I am sorry I haven’t written for so long. Sometimes life gets in the way of the things we really want/need to do and work is the biggest culprit. This is not a usual post either. I’ll begin by saying that Jamie has been fine – the usual cycle of a day of 3 – 4 full on seizures, then about 10 days – 2 weeks of our beautiful Jamie back where he enjoys life and copes with everything brilliantly. Then we bewgin the downward spiral to the next lot of seizures. Jamie obviously feels worse and worse, he may have headaches (I’ve seen him rubbing his head), but his behaviour becomes more and more erratic intil the next bout of seizures blow his mind clear. It is an awful cycle, we treasure the good days and work through the bad, but feel so bad for him when things are hard.
But generally, he has been more settled, relaxed and happy – well it’s summer time and he loves the sun and being able to sit outside and shred grass and leaves – its his idea of heaven 🙂
Most of this post is going to be taken up with a letter I wrote. This letter was addressed to staff at Jamie’s school. I wrote it sometime after he had suffered awful abuse at the hands of a team of support workers who shoulkd have known better than to pick on a vulnerable and totally defenceless boy. It still breaks my heart that I couldn’t protect my boy, he did not deserve this and the damage it has done to him long term doesn’t bear thinking about. I hope it never happens again, Andy and I do all we can to protect Jamie, the guilt will never leave us.
Here is the letter:
Abuse: A family perspective: An open letter written to support staff at Jamie’s residential school.
Well, it was Monday again – a perfectly normal Monday, I was busy working – a mix of working from home and going out for meetings. I was busy, absorbed in Monday things that needed doing. The animals were fed, dog walked, house tidied (sort of). Husband was off to work and then I started. I worked through lunch, forgot the time – and was just about to think about my rumbling tummy and what I could give it to stop the noises when the phone rang. I nearly didn’t answer, but something made me think this wasn’t a cold call, or someone wanting me to buy something that I didn’t want or need.
So I picked the phone up. I still think about that call, those feelings come flooding back. The shock and pain that I felt when I was told that my child had been exposed to verbal and physical abuse. That he had suffered because of the actions of some people whose job was to care for him and support him. But more than that, these were people who I trusted with my beloved child, who I loved so much and thought about every day. They had made his fragile hold on a world that made little sense to him even more precarious. He can’t tell us how he feels, can’t tell us if he is hurting, or sad, or has been hurt by someone. He is vulnerable and defenceless and we, all of us who know him, had let him down.
But above the hurt and pain, the tears and sadness, there was an overriding feeling of anger – deep, deep anger that made me feel quite violent. Now I am so not a violent person, I would always turn the other cheek. But not now – my son had been violated, he was hurting and someone had done that to him. I felt so, so angry, almost out of control. I’m glad that I wasn’t, but I still feel angry with the people who treated my son the way they did, will those feelings ever leave me, I doubt it.
The first few minutes after the phone call were awful. I felt desperate, a physical pain wrapping around my heart. I felt as if my heart was breaking. I was in shock. I rang my husband in flood of tears, what could he say, he was in shock too. We spent days feeling just dreadful. Sometimes I was able to blank out the feelings and get on with everyday life. But sometimes they would come flooding in unchecked, as vivid as if it was happening all over again. I dreamt of my boy, being spoken to in language he didn’t understand but knew was bad, being ignored when he was dirty, treated as if he was a nuisance. During the day my imagination was running riot, all the problems we had encountered recently – the bruises, the seizures, the way he looked so poorly but we didn’t know why, were they all because of this? He is so sensitive and life is difficult enough for him – why did this have to happen?
As the days went on, I was able to think a bit more clearly through the pain. After that Monday phone call, I just wanted to rush to my son and take him away from that place. I wanted to bring him home and keep him safe, protected and with me always. But he would hate that – to change his routine without preparation or warning would be so hard for him to cope with, I couldn’t do that. And lets face it, if I could cope with him at home 24/7 do you think I would not have him here with me? So we tried to carry on as normal, visiting for his special day just as we always did. Taking him to the familiar places that he loves and where he feels safe. We tried not to show him how desperate we felt, we tried to reassure him that he was safe and that he was loved and we would care for him and protect him. But we knew in our hearts that we couldn’t, there was no more confidence that the people we had entrusted our precious son to would love him and treat him as he deserved to be treated.
My son can’t talk, oh he understands loads, but he can’t talk. During the time he was abused he would ‘speak’ to my husband, his step-dad who he loves and trusts beyond all others, when he got in the car to go out. It was in his own language, we couldn’t understand what he was saying, but he was definitely saying something. He doesn’t do it now, he didn’t really do it before – occasionally but not often. During ‘that’ time he did it every week, just when we were in the car and we had first picked him up. Looking back, I just wish I could understand him, I wish he could tell us. I kick myself for not seeing the signs in him, for not understanding what was different about him, for being complacent and never letting it cross my mind that some of the people who looked after him were doing the exact opposite. They were making his life a misery, I didn’t see it. I will never forgive myself.
The thing is, things have changed now. When we would pick up our son from his house after the allegations, I would look at the support workers on duty, and wonder, did you know this? Could you have stopped it? Could you have protected my boy and kept him safe? Many of you are my friends. I have always appreciated what has been done for my son, always recognised what a hard job it is – I know because I have also done it. It is a difficult, stressful job but also the most rewarding and fulfilling job you can possibly imagine. No you don’t get the recognition you deserve, but there is just no excuse for the behaviour of your colleagues. And I did lose my confidence in the organisation, why had they allowed this to happen? The trouble is, who do you ever trust, and how do you know? Would anywhere else be any better, or would I expose him to even more abuse and danger.
Looking back on the past months I can see that I had taken for granted that others would feel the same about my son as I do, that I was lulled into a false sense that he would be safe and happy and have the best care at his school and home. My biggest worry about him growing up was that something like this would happen – you hear such devastating stories of people in institutions from the past. Of people being chained to the toilet because they are incontinent. Well my son is incontinent – doubly. He can’t help it, it is not something he wants or has any control over. You can’t ‘teach him a lesson’ about soiling himself. There is absolutely nothing he can do about it. If there was he would be able to use the toilet because he is not stupid, far from it, he understands more than we will ever know. My feeling when I heard what had happened to him was, how dare they, how dare these people judge my child. They don’t know him, have never bothered to see him as a person. I know it is probably an over-reaction, but I am sure you can understand – wouldn’t you do anything for your own children. And my son is so vulnerable and defenceless.
I still feel devastated by the events that took place. I still have little confidence in ever feeling ‘right’ about my son being in a place like this. What will happen when I am older and can’t keep an eye on him? When I am dead, who will fight his corner then? Because when the chips are down, can you honestly say that you will protect him, preserve his dignity and keep him safe from harm of any kind to the best of your ability? I hope you answer yes to these questions. And I thank goodness that some of you have the courage to speak up and stand alone to protect the vulnerable young people in your care. I won’t forget what you did; my son could very well have died if someone had not spoken out for him. I feel so sorry this has happened, it is hard to move on – I wonder how my son can make any sense of the cruelty of some people, I can’t!
Until next time
Well it is amazing what a difference a few months can make. Jamie has just been wonderful for the past few weeks, he has so enjoyed seeing us on Sundays. He has enjoyed his picnics, drives in the car, coming back to his flat – well everything about our Sundays really. I love these days, they mean everything to me and especially when Sophie comes as well. Jamie loves to see his big sister and their relationship is so special.
Interestingly, Jamie has been suffering a lot with seizures recently. The frequency pattern seems to have changed and they are more frequent, i.e. every two weeks. He still has clusters, but they are not always first thing in the morning, when he is in the bath and they tend to be in two or threes rather than threes or fours. However his seizures still last for a long time – one was nearly 5 1/2 minutes. That is a long time to be not breathing properly and he does turn very blue. It is such a catch 22 situation, because he has a rescue medication which seems to control the following seizure, but also seems to leave him in a bad place, and he can be stressed and anxious, whereas if his seizures run their course he seems much calmer and happier. So, what is best – the risk of harm from seizures or Jamie having a better quality of life? Not a question I like to answer really!
But to go back to Jamie’s mood – is it because Spring is coming, days are longer, the weather is warmer? We know how Jamie has never coped well with Autumn – changes in routines, often coinciding with new things e.g when he was at school, changing class – or changing school. All of these can make him very upset. And I think he could well be very affected by SAD (Seasonal Affective Disorder). Perhaps we should investigate this further – but I just don’t have much time for the next few months. A summer project I think, when my work levels have fallen below the total overload that they are at the moment.
Jamie’s relationship with Andy, his stepdad, never ceases to amaze me. My son, who is so aloof from most other people (apart from his sister Sophie), will happily hold hands with this man, talk to him (in Jamie language), smile at him, look to him for reassurance and comfort and know that he is loved and protected. I’ve been thinking a lot about their relationship, really because when I first noticed, it surprised me so much. I really did not think Jamie would ever form such a bond with anyone except Sophie, I thought it was not something he could tolerate and I only ever saw his total disregard for anyone else. Oh don’t get me wrong, he knows his family and he does have a strong bond with his cousins. But a friendship such as he has with Andy, I never thought would be possible. It is a covert friendship, not really visible to the outside world, because of course Jamie does not speak, but the body language signs although oh so subtle, are there to see. It gives me so much pleasure. But when I analyse this relationship between them, I can see that Andy never puts demands on Jamie. What I mean is that Jamie doesn’t have to hold Andy’s hand (unless the situation is not safe). Andy’s hand is offered but Jamie only needs to take it if HE wants to. I think I probably put too much pressure on him, even though it is not outward, it is an emotional pressure just because I am his mum and this has all sorts of unseen pressures that most of us are not really aware of.
Anyway, Jamie being in such a happy place will mean that we can expand our Sunday picnic and try out different places. Next Sunday we will go and visit my sister, Ros. Jamie knows her and we have visited Ros’ beautiful house many times since he was a baby. It means so much to me to have this, because it gives us a place to take Jamie so that he can see his cousins, aunts and uncles in a place of safety and where he feels safe and secure – thanks Ros, you are a star. We also want to go to visit places like country parks, steam trains – places we used to go to but because Jamie has found it so difficult to cope with any change in his routine, we have not been to for ages. Of course, we will take it very slowly, and Jamie won’t need to even get out of the car if he doesn’t want to, but to be honest it is lovely just seeing him enjoy a drive out.
And so to the other part of Jamie that has been on my thoughts recently. Many people may be reading my blog because they have been to the webpage of Jamie’s Concerts. This is a charity, set up by my dear firend Noriko Ogawa, originally in Japan, but now expanding in the UK. Noriko was our lodger when I lived in London, and she lived with us when Jamie was born and throughout the first few years of his life. Noriko saw the signs in Jamie that all was not right long before we were willing to go there and certainly to accept there were any problems in his development. Jamie was really not willing to accept closeness from anyone else and so Noriko helped me, as Jamie’s mum, to cope with the sleepness nights, the difficulties in preparing meals, keeping the house clean – all those things which are hard enough with small children, but when they go on for years because you can’t leave your child, on even to go to the loo, times when you are awake become a blur, and a good night’s sleep seems a distant memory. Noriko was there for me, recognising how I needed to relax and be calm for Jamie. Jamie’s Concerts now have a UK website – http://www.uk.jamiesconcerts.com/introduction.html. Do have a look, Noriko is an inspiring person, and now a Cultural Ambassador for the National Autistic Society. I am very proud of Jamie – and of Noriko. This project fills me with a glow, the value of frienship like this is immeasurable. I do hope you will be able to go to a Jamie concert sometime, and perhaps we will meet in those wonderful circumstances.
I feel so optimistic for Jamie this summer, I hope he continues to enjoy our Sundays and that we can continue to develop and extend his days so he can enjoy new things with out feeling threatened or upset because his routine is different. We can do it, because we can change his anxiety and make him feel safe – our key to unlocking Jamie’s world.
Jamie, we love you so much, beyond measure, beyond everything.
Thank you for reading, I hope you enjoyed our positive post 🙂
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!
We have had some really interesting times with Jamie – very challenging but he continues to surprise us by understanding so much – and trying so hard to do the right thing.
He has suffered so much with his seizures; clusters of 3 or 4 in a day, or 24 hour period, sometimes beginning with one in the evening and then carrying on to the next day. That is so worrying – we can’t help but sit and panic that he will have one while he is asleep – everyone’s worst nightmare. At least, even though the morning seizures are often when he is the bath, he is so carefully supported by his staff that it is highly unlikely he could hurt himself, so worse, drown. This is one of the biggest killers from epilepsy – I don’t forget this!! Also dying from a lack of oxygen whilst asleep. We will keep you safe Jamie, as safe as we possibly can.
That’s not a very positive start is it – but honestly, overall we are really pleased with how Jamie is doing. He seems much more settled, he loves his own space in his flat – and the fact that he can push people out if he doesn’t want them there!! (I get pushed out pretty quickly when we come back after Sunday lunch). He even shuts his door on our way out on Sundays, so that no-one can go in. I think that that amount of mental cognition is pretty remarkable in a person like him – but then we have always said there is so much that goes on in Jamie’s head that we don’t know – or he doesn’t want us to know!!
I have had to leave this for a while – work was just to intensive – exam and end of module marking, there was no time for anything else. But now I have some time, and I have been thinking about Jamie and the problems he faces in his life so much. It is a good to get my head around his behaviour, especially when we can work in close consultation with the support staff at his residential home.
Lately Jamie has been binning all his food – or most of it. This is even food he normally likes. He has got quite thin and we can’t work out why he is doing this. He also had been self-injuring, banging his head quite violently, not all the time but more frequently than usual. I spoke to one of the managers yesterday and we discussed how Jamie’s behaviour is pretty typical of someone in pain. But what it is we don’t really know. It could be – tummy ache from his ongoing problems with constipation; toothache – he is not the best at cleaning his teeth and also one of the side-effects of one of his epileptic medications is receding gums (of all things!!); headache – his head must feel weird with all the seizures he has – something else we haven’t thought of ?? ….. We will get to the bottom of his problems, however long it takes! The doctor and dentist have both seen him, both put forward ideas although I am not sure that they will work. We shall see!
Jamie has also not been sleeping well. When he was a child this was such a massive problem – he would go for days and days on just a few hours sleep. I used to walk around like a zombie!! As his routine gave him security and made him feel safe, he began to sleep better. But now he seems to be awake for a lot of the night – is he in pain? Is he anxious? We do need to get to the bottom of his problems, to try and work out why he is distressed and anxious.
On a positive note though, we are in absolutely no doubt how much Jamie loves his Sundays with us and how much he loves going to the pub for his lunch. A few Sundays ago, when he had been awake most of the night and he was looking particularly rough and almost ill, we took him out as usual. But on the way to the pub, Jamie got really upset and started headbanging in the car. So we thought he is telling us he doesn’t want to go. Instead we stopped at a supermarket and got him a picnic. While I went to get the food, Jamie stayed in the car with Andy, but he got so distressed and banged so hard, we just thought we would go straight back to his home. While we were driving back (Jamie stopped banging straight away – as soon as the car was moving!) Andy and I talked about our Sundays, and perhaps Jamie was not enjoying lunch in the pub anymore, perhaps he wanted to do something different. Anyway, the next week, Jamie couldn’t wait to come out with us, he was on his best behaviour and really, really enjoyed himself – he ate all his lunch and had his favourite sweets as a reward for being so good, as he always does. Since then his behaviour has been really really good on a Sunday. Voting with his feet meethinks – I am in no doubt how much he treasures his Sundays – as do I. I live to see him, especially when Sophie is there as well. I miss him every day, having good Sundays with him, and knowing he is happy are the things that make him living away from home bearable. When he is in pain or upset is it very hard for us his family, but hard for his carers too. We will work together to make things better for him.
I hope he knows how much I love him , but I’m sure part of him does 🙂
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.
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 …..