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Archive for September, 2013

Jamie’s Sundays – 15th September

The bond between brother and sister - so strong.

The bond between brother and sister – so strong.

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

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

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

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

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

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

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

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

Jan Mather

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Jamie’s Sundays – July 21st – August 18th

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