I write a lot of letters of complaint on Joshua’s behalf to people that have let him down but while I complain a lot, I also recognise it when people have done the right thing for him. I recently wrote to the local authority’s Transport department to ask them to pass on my thanks to Joshua’s taxi driver and his passenger assistant. When Joshua began fitting on the way home from school the other week, they were brilliant in their response: they called me to tell me that they were turning around and taking him back to school and they timed and counted the seizures ready to report accurately to school staff. They stayed with Joshua until the school staff hand everything in hand and were visibly moved by what they witnessed.
I never underestimate the impact that witnessing Joshua’s seizures can have; it is a frightening sight as he looks so different , all contorted, and he can look scared, and you wonder if it will ever stop as time goes slowly. So I was not surprised to hear that the taxi driver was moved to tears.
Once Joshua was home , I sent both the driver and escort a text to thank them and to reassure them that Joshua had recovered and that they’d done the right thing. I also sent an email to their management”s manager to pass on my thanks. They were delighted to be called to be given the news, as apparently it rarely happens.
I also sent an email of thanks to our adult social worker after her first visit to us . I wanted to thank her for being so reassuring as she had, single- handedly changed how I felt about Joshua’s transition to adult services. We no longer felt alone with such a big change and she has continued to support us all year.
So give thanks where it is due , it balances out against the many complaints that I also write.
This weekend will be Joshua’s last respite weekend of the year , so my husband and I are taking a trip away with our three dogs . In order to make it more worthwhile, I took yesterday off work and we travelled by train instead of driving. We do not usually favour train travel but we have come a long way from home and so this seemed to be a more relaxing option. But juggling three dogs on s busy train might not be considered to be too relaxing , but they behaved beautifully. We avoided queues on motorways, road rage and grumpy drivers not letting us out at junctions and it felt like more of an adventure on the train , though I did keep saying, thank goodness we have not got Joshua to negotiate too!
We left home at 9.15 and with three train changes later, we arrived at our destination at 5.45, though it felt later than that. We have never been here without Joshua so it feels odd – his toys are still around from our last stay, his bedroom is unused and when I went to the supermarket to buy provisions, I almost bought yogurts for his medicine and full fat milk too. I had three reassuring photographs from Yorkshire Grandma who was in charge of Joshua last night- one of him waving, one of him eating Jaffa cakes and another of him playing. I have packed his respite bag, while I was packing my own rucksack, so he should be fine to go from school today.
I told him yesterday morning to behave, to keep his seizures under control, that I loved him and that we would next see him on Monday evening.joshua won’t know how far away Monday is but I’m hoping that respite will keep him so busy that he won’t have time to miss us. I know that they have a Christmas party planned as they requested that he wears a Christmas jumper. I reassured them that that would not be a problem as he’s been wearing his since 30 November!
So let’s hope that this long weekend is exactly what it is meant to be, a break from each other. An opportunity for us to recharge our tired batteries and for Joshua to have some fun with his peers and some attentive carers who he is very fond of. I will of course call each night to hear news but other than that, Joshua’s care is not our responsibility for a few days and that is a liberating experience!
I have probably mentioned before that I am lucky enough to have had five best friends in my life, each from different stages of my life : my first from my primary school days who now lives in Texas, my second from High school days who has not moved far from where we grew up, my third from my time as a student who now lives in California, my fourth from when Joshua was a baby and my fifth from Joshua’s time at special school. Even though two of the five are in America, we still manage to sustain our close friendship with letters and emails being regularly exchanged between us. I went to Texas to visit my first best friend three years ago but I have not seen my second or third for several years.
With a really good friend, who knows you well, it is not necessary to meet face to face all the time, so long as you have some communication between you to keep the friendship alive. But when you do meet up, it is as though the years fall away and we simply picked up where we left off, which is a precious thing. When I went to Texas, I had not seen my childhood best friend for many years, yet there we were drinking tea early in the morning, before the rest of the household had woken up, putting the world to rights and reminissing about happy days growing up in Scotland.
It makes me rather sad that Joshua will never experience close friendships like I treasure. He will not share secrets with a peer or stand up for his friend when they need defending. In my experience he will be missing out on something really special and something that makes a big difference in my life. I have several places that I can go to if I am angry or upset and I know that I will have 5 sympathetic ears that will listen to me and will take my side, but he sadly does not have that in his life. He does have a few friendships but they are not about confiding, they are largely about affection and fun, and perhaps that is what he needs from a friend.
I do not think that Joshua feels sad that he is missing out, I have often said that our dogs are his best friends, and so I should not feel disappointed that this is yet another thing that he has been deprived of. So for now I will continue to develop and get as much as I can from my best friendships . I am lucky enough to have many additional friends and that pool is still growing I am delighted to say; one of them even teased me by asking if she could apply for the position of my sixth best friend!
It was a long day yesterday : I left work early to drive to school as I had a Governors meeting at 5,which finished by 8pm. But the long -standing Chair was retiring and so we went onto the pub for drinks and something to eat so it was 10pm before I got home – that is my usual bedtime! My husband was in the bath so I went to talk to him and tell him about my day and find out about his, when we heard Joshua on the landing trying to join us. I went to find him and he gave me the biggest smile ever, he was visibly delighted to have me home. Then I was treated to one of his bear hugs as I took him back to his bed. I lay next to him for a short while, reassuring him that I was home and enjoying his hugs and feeling him relax then start to snore.
We came downstairs for a cup of tea before bed and of course, now that he knew I was home, Joshua made two more attempts to join us. He may not be able to speak but Joshua made his feelings perfectly well known last night : I was both loved and missed. The smile is a powerful tool as it can express love, happiness and it can even brighten a stranger’s day. I often get some very odd looks on the tube train in London for smiling at strangers, as that is a rare phenomenon there! I know that I try hard to make people smile, through both my words and my baking – I took lemon drizzle cake to the Governors’ meeting and made enough to share at work too! When I am feeling low, it is my smile that I miss. I can still force a grin but I lose the smile in my eyes somehow. I can tell the difference but I am not sure how many people around me notice, just those who know me well I hope. But Joshua’s smiles come from the heart, he does not have the ability or understanding to force a smile, so they are all genuine and they are all special.
At the end of May this year I was told that I was pre-diabetic and that I needed to exercise more and be more discerning over what I eat. That weekend I went for a swim and enjoyed doing lengths of the pool and so since then, I have swum for 30-40 minutes at 7am at least twice a week, every week. Sadly I have not lost any weight doing this but I certainly feel fitter, as it has got easier to do, and I enjoy starting the day in this way. There are not many of us in the pool when the leisure centre opens and I arrive in my swimming costume under my clothes , so that I can get into the pool as fast as possible. I have found that I have had lots of good ideas while swimming, as I plan my day, play over conversations that I need to have in my head, resolve problems that have been bothering me and just have some blinding ideas – like going away for the weekend with my mother and sister or Christmas present inspiration. So swimming has been good for both my physical and mental health and it feels like some precious ‘me time’.
Our leisure centre however is going to close at the end of the year for building work, for a full year, and so I will miss it. I am not sure that I am committted enough to drive the 25 minutes to our next nearest pool to swim at 6.30am, but we shall see. Our leisure centre was due to close in the autumn so we have already had some bonus months that I did not expect and I am still hoping that it will be delayed again.
Up until this year, I have rarely used our local pool. Joshua had swimming lessons there when he was younger and enjoyed it. He used to pretty much do his own thing but his teacher did get him afloat and moving, even though he had his own way of swimming, not a recognised stroke. I can remember my Mum coming to watch him once and he was in the deep end , bobbing about like a tadpole, and he almost sank when he stopped to wave at his Granny. We had a routine there: always using the same family changing cubicle and after his lesson, he was always rewarded with a bag of Quavers from the vending machine, which he ate very slowly in the cafe overlooking the pool. Now that he swims regularly at school in the hydrotherapy pool, I have hardly taken him to our leisure centre as he does not appreciate the colder water and as he does not move about very much, he soon feels the cold. I will take him back when the building re-opens in another year. In the meantime I need to find somewhere else to resume my swimming through the winter, as I am not mad enough to take to the sea through the winter, as someone helpfully suggested.
I keep being asked what Joshua would like for Christmas and it is really hard to give ideas as he has pretty narrow interests, so he tends to receive a lot of clothes. Joshua cannot abide opening presents so I try to reassure people that he does not need any gifts, that he has all that he needs, but they are not happy with that response. Joshua adores music and so I hit lucky with a great second hand guitar in a charity shop window lately and as he has found it and been playing it already, so I know that it is a success. But he can only master one handed instruments and the notes need to be there already, as he will not blow to create a sound for instance, so he regularly plays with his keyboard that he was given a couple of years ago and he bashes the keys of our piano most days too. But I am not sure what other instruments are left that he would enjoy.
He enjoys watching films on my ipad or on the DVD in his bedroom or in his den, but it is really hard to get him away from his familiar favourites : he likes Shrek 2, and he will not tolerate Shrek 1 or 3 – which was on BBC yesterday – for any length of time as although the characters are familiar, the story is not right. Similarly the Lion King and Madagascar sequels have been rejected by Joshua. He knows what he likes and likes what he knows. He has been bought several new DVDs over the years, in case something catches his eye, but I usually end up giving them away once he has rejected them.
Pre-surgery Joshua used to love flicking through books; he had enough movement in his right hand to hold a book while his active left hand would turn the pages and he developed a large library of books, so they were always a good present idea. But sadly while he occasionally looks at them nowadays, his right hand is now fixed and cannot hold a book, so they are not as easy to access. He will lay them on his knee and turn the page for a while, but they certainly hold less appeal than they once did. They are much better now for throwing on the floor, as they both make a mess and a loud noise as they hit the carpet. In the spring I was so fed up replacing his book collection in his bedroom back onto his bookshelf that we had a cull. I looked through all of is many books and ones that were now too babyish for him or that were gifts and were too old for him, I selected out and I replaced just the ones that he picked out to look at , the books that I enjoyed reading to him at bedtime – rhyming Hairy Maclary and Julia Donaldson books were going nowhere – and any that had sentimental value. The rest filled two big bags for life and I took them into school, to donate our unwanted books to their library. I heard that a class loved discovering Joshua’s unwanted books and that they spent days unlocking thier treasures. I would much rather that some other children enjoyed his books, than continually picking them up off the floor.
He is not easy to buy for and that is why I have started to buy him experiences rather than stuff : last Christmas he got tickets to go and see Matilda, which we loved this October. This year we are going to see Shrek the Musical with our same musical- theatre buddies. He tends to nod off for part of the show, but I am confident that what he has seen this year already, he has enjoyed – most of the party at Madagascar the Musical nodded off at some point!
So lets just wait and see what Santa brings him and lets hope that it does not involve too much unwrapping!
Later today Yorkshire Grandma will move into our spare room, until the end of January which she has done for the past few years, since she was widowed. She spends half the week with us and half with her daughter about an hour away. She gets company and somewhere to stay, and we get some help at home,with Joshua and the animals. She will help out with Joshua’s morning routine. The arrangement works well, although Joshua gets used to having her aound all of the time, which is more difficult when she leaves but it is useful having that extra pair of hands.
Joshua has known Yorkshire Grandma all of his life and they have a good relationship. She does not leave his side when she is in charge of him, following him from room to room and she lets him have whatever he wants, so I have come home from work before to find him clutching the ipad with Madagascar on it, while the Live8 Show is blasting out on the TV in den and Lion King is playing away to itself upstairs in his bedrooom. If Joshua rejects the first meal that she has prepared for him, she will produce a variety of alternatives until she finds something that he likes. I accuse her of spoiling him, but she is only doing what a real grandparent would do, even though she is a long-standing family friend.
We will be out for afternoon tea when she arrives this afternoon and I want her to feel welcome, so I will hide a note in her bedroom so that she knows we are looking forward to her coming. Hopefully that will make her feel happy. I bought her a Lindor advent calendar this year and that is making her very happy every night when she goes to bed to read, with a sweet treat. She tends to take herself off to bed around 10pm so that she reads before she falls asleep and that also gives us some time without her sharing our lounge, which makes her a considerate house-guest in my book.
Yorkshire Grandma takes care of things while we are not here too : she usually looks after our pets when we go away. My husband and I are going away next weekend, while Joshua is at his respite provision, and with Yorkshire Grandma being around, we can travel on Thursday and have a long weekend. She will have Joshua overnight and pack him off to school on Friday morning for us, which is really helpful. I just need to get my head around packing everything that we need, plus Joshua’s weekend bag, but I will write myself lists and chip away at that all week I suspect.
So, welcome to our home and our mad family Yorkshire Grandma!