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Archive for March, 2015

Jamie’s Sundays 22nd March 2015

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 🙂

Best wishes

Jan Mather