Good Friday

Good Friday represents a special anniversary for our family: 12 years ago on Good Friday we bought a holiday cottage in a beautiful rural part of the country. We used to own a caravan , and then a motorhome, and we found that we were always returning to this region for holidays . When Joshua was younger, he used to bounce up and down all the time, and this was not ideal behaviour for a caravan, coupled with our ownership of four dogs at the time. We had the opportunity , so we began to look for a second home . On the day that we saw our cottage, we viewed five properties in total , which was a lot to drag 6 year old Joshua around. As we approached this one, it was a cold, wet day but we were immediately struck by the view and the coal fire. While looking around, Joshua had said “waterfall” and we had explained that we would walk by the waterfall later as a reward for his good behaviour. But The couple who showed us around explained that the village had its own waterfall and that Joshua would have seen-it as we drove through the village, so he was probably relating what he had seen but we had missed.

When we got home, we were very objective about the various properties and we scored each one out of ten on a range of criteria like space, view, car parking, real fire etc . This cottage won on most criteria so we made an offer and on Good Friday 2007, it became ours. We all love to come as it is so different from home, but it is homely. Joshua outgrew caravan holidays and to have a familiar place, where he has his own bedroom, is so much easier to manage than a hotel room. He has space to wander, with a garden too and even his inevitable copy of The Show to watch in his room.

We are very lucky to be able to have such a treasure and we like to share it with friends and family too, for weekends away or even week long stays. We tend to come here for Easter, to spend our anniversary here as we have the benefit of the double bank holiday. When Joshua is with us, we are unable to walk as much as we would like in the countryside , but it is convenient to come when he is in respite too, then we have a different experience of the region.

Last night we arrived in two cars, my husband and Joshua came together with the dogs – and cat!- from home. I joined them later after I had completed a day of hospital visiting . Joshua seemed both surprised and delighted when I appeared ; so much so that he was saying all sorts of words in the bath to me that I’ve not heard for months, he was so giddy with joy. That is the impact of our slice of heaven .



I have already written about my parents and what they mean to me, so now it is the turn of the other person who has known me all of my life : my big sister. My sister was 2.5 years old when I was born and apparently she was very possessive of her new baby sister and she was reluctant to let anyone else near me when I came home from hospital; her first memory is of a temper tantrum that she threw when somebody else dared to feed me a baby rusk. We did not really play together as children, as my sister only wanted to play schools,where she was teacher and I was the pupil, whereas I was much happier floating around the garden wearing fancy dress, but we were always companionable and talked a lot together. But as we have grown older, I would say that we have become much closer :

  • We are in contact everyday; we may not speak to each other daily, but  we send each other messages throughout the day. In times of family crisis, such as now when our Mum is in hospital, we are in more regular contact and we have been phoning each other too. We share and keep secrets with each other and we have always got plenty to say to each other, but are both good listeners and advisers when needed. Mum is fortunate enough to have three sisters and I have seen how they have rallied around her while she is unwell too, their family unit is similar to ours, except there are more of them.
  • We are fiercely protective of one another; so if somebody hurts my sister’s feelings or upsets, her, I am ready to protect her and fight her corner. I will always take her side, and I know she will be the same, and perhaps ask questions later. It is true that blood is really thicker than water, and this applies not only to my sister but our offspring too, so we are also protective Aunts too. My sister adores Joshua and I feel the same way about my niece, and we have both appeared at hospitals for them when we have been needed, no questions asked.
  • Although we are very different in personalities, my sister and I share  our parents and their principles in common.. So we would almost definitely approach problems in a different way – I am always more bolshy and spontaneous than my sister – but we will always be moving in the same direction. Of course there is room for both approaches, neither of us feel that we are inevitably right.  Physically, I am very similar to our Mum , while my sister resembles our Dad more, so we do not look like sisters.
  • We enjoy each other’s company, so we have often shared holidays and spa days  together and those are always fun times. We are going on a spa day in two weekends time and we will laugh and talk all day long I expect. In the year that my sister was 50 and my niece was 21, we 5 went to Florida for a fortnight together and had such a fun holiday. I was anxious before hand that we might wind each other up as my sister loves a plan , whereas on holiday, much of the joy is waking up each day, without a plan and being spontaneous about what we might do with the fresh day. In fact it was this fundemental difference in our approach to holidays, that had made me hesitate when she first suggested the idea. I only agreed on the basis that my sister and niece tried not to plan too much. But we had the best time, that we have enjoyed other holidays together since – long weekends in Center Parcs and a week in Majorca for my 50th. So it is a real bonus that we like as well as love each other. For the first time last Autumn, we went away with Mum and had a fabulous ” Girls” weekend in Harrogate and we had such fun, that we are hoping to make that an annual event as all three of us laughed a lot.

So thank you to my sister for everything that you do for me, we are lucky to have each other and you are a critical part of my support system. You not only support and protect me, your little sister, but you have embraced my husband and son too and welcomed them both into our family unit with your generous, open arms.


Interpreter required

Joshua had a longer day at his new adult respite provision yesterday, he was there from 8.45 until I collected him at 4 pm, so that was a  longer introduction even than a school day. I was delighted that, when he worked out where we were driving to, that he was happy and rather than holding back in the car when we arrived, he happily walked down the path, to wait at the door with a big grin on his face. Even though he is virtually non-verbal, Joshua would have been able to indicate if he was wary to go back there, so that was a great start to the day and a positive sign of his attitude towards the place and the staff.

I thought that I had told the manager everything about Joshua, we have had several meetings and she has been to school and his current respite place to speak to staff too, but there are still many things that I did not explain. I am impressed that the staff there have endless questions about him and his ways when I go to pick him up. they range from practical tips like:

  • How do I fold away his wheelchair to fit it in the car boot? She watched me fold the chair away, the order in which to do it and how best to man-handle it into the car
  • How best do I lift his legs into the car, without hurting him? I explained that he can lift his own feet into the car but if you are in a hurry, then it is sometimes easier to do it yourself! I could not tell her how I do that but she watched me and commented how easily I lift both legs together, behind his knees.
  • I am sorry about his pad, but I was not sure how to change it? I have been changing Joshua’s ‘nappies’ since he was a baby and so I have developed a quick and efficient technique, now that he stands while being changed. I briefly gave a demonstration, in the car park ,of where best to stand in relation to Joshua, in order to have access to his front and back, but I am aware that it requires practice.
  • You told me to remove his boots, but do I also take his splints off? Yes I was not clear, I meant for them to give his feet a rest and to remove both his boots and his splints and put some slipper socks on his feet instead.
  • Joshua has been sweeping up here, how do we tell him no, when we do not want the brush in the lounge? He understands stop and no, so tell him and remove the brush from him, ideally replacing it with something just as fun that he is allowed on the lounge carpet, like a hoover.
  • Joshua tried to go to sleep on the beanbag, is that OK? Yes absolutely, I have never known his siestas interfere with his sleeping at night. If he needs to doze, then please go ahead and allow it, just do not let his nap go on for over two hours! There is more risk of seizures if Joshua is over-tired, so be guided by him and allow him to catnap in the car too. if he needs to

They have also asked about Joshua’s communication :

  •  What does it mean when he taps his chest? Joshua is saying love when he pats his heart and so he had been telling them that he loved them, while in their care. After just three visits, he falls in love quickly
  • What does he mean when he taps his knee? I am not sure here, it could mean a variety of things. He could be telling you that it is sore, maybe asking you to copy him and he is playing a game by pointing out your own leg or he might be saying here/now, it all depends upon the context.
  • Joshua kept saying ‘thank you’ when we got to McDonalds or back from the walk? That means he is really grateful and he has enjoyed what you have done with him or he is relieved to get back to the house. This is the only phrase that they have heard him utter, but it is a good and clear one and his politeness makes me proud as he uses it so appropriately.

I am happy to answer any of their questions, as it shows that they are investing time in understanding Joshua and in wanting to get things right for him : you only learn in this life by asking questions. I am just amazed by how much I take for granted and how much that has become so instinctive, that I no longer recognise it as being unique to Joshua. So this was his final session in the Easter holidays, the next time he is going there is after school one day next week for his tea and I will collect him before bedtime. I like the pace that we are working to and it feels comfortable for Joshua too, it does not feel that we are rushing him or going too slowly either. He is taking it so much in his stride, he sat on his allocated bed in his bedroom yesterday, before we left and I do not think that we are too far away from his first overnight stay already. We have moved at a pace that both he and I can tolerate and that the staff at his provision can accommodate too, so that is perfect.

Wonder Woman!

I did not see Joshua awake yesterday at all ; he was asleep when I left to go to work at 8.30 – Yorkshire Grandma said that he slept in until 10.15!! – and he was in bed when I got home ,late. I had a big day at work as I had a four hour drive to a potential new client , where we have been shortlisted as one of three, to bid for a 3 year contract. I was preparing for it last week, amid the unexpected nature of hospital visits, but managed to get my presentation prepared as I had some useful thinking time on the motorway.

I was the first of the three bidders to present to a panel of three and it was quite a formal process when I was timed and I had to speak for up to 40 minutes, with no interruptions from the panel. I am comfortable with formal presentations like that, but I prefer them to ask questions as we go along so that it is more like a conversation, rather than me giving a speech. After my presentation there were some more marked questions and then some additional questions , which they wanted to know the answers to, rather than being  a formal assessment process.

One of those questions threw me briefly as one man asked me ‘if your company was a super hero, what super hero would you be?’!  Now if Joshua had been a ‘normal’ child, I would have been more aware of modern super heroes, but as they do not interest him, I have never seen any of the Marvel films. So I had to dredge my memory for a superhero from my childhood, which  took some dredging I can tell you. I came up with Wonder Woman, which I used to watch and enjoy as a girl. I explained that market research is an industry dominated by women and that we would only have to spin around, and we would resolve their problems. He said that he liked my response but it was the best that I could do under pressure and with no notice or time to research, and I was simply relieved to be able to identify one!

There are lots of super heroes in my life, people who do amazing jobs and appear to have magical powers, and I thought about them on my long drive home. I do not know how well I did but I felt as though I would not have done anything differently if I had to go through it again, so that should be good enough. We may or may not be a good fit with that company, but I was honest about where we are and what we could offer them. This was definitely a day when my work-self took to the fore, being Joshua’s mum and Mum’s daughter, took a back seat for the day. I would not like everyday to be like yesterday, but every once in a while it feels good to dress smartly and to show off about what you can do and have done in the past.

Lazy Sunday Afternoon

After a busy time last week, with hospital visiting, travelling and two mornings at his new respite provision, Joshua and I were both ready for a quiet, lazy day yesterday to re-charge our batteries. My husband was recovering from jet lag too, so we were a sleepy family yesterday. I made a birthday cake for a friend and we took it around and sang yesterday morning, while she opened her parcels, so that was a fun morning. On the way home, we stopped off at Aldi for our Sunday supermarket shop as I knew he would not want to go out again once he got home. It was more challenging than Tesco as the aisles were tighter and the smaller store was fuller, so I had to control the trolley more than I usually do or else we would have been involved in several collisions. As usual I am not allowed any browsing time, so rash choices were made and thrown into the trolley as we breezed up and down the aisles at speed. The main issue was the long queue to pay and the lack of seating near the tills, which Joshua really missed, so he had to stay with me in the queue, which was challenging but we managed it. While packing my bag, I had to be one-handed as the other was keeping Joshua from dashing out of the automatic doors into the busy car park, so I felt rather like a juggler. We managed and he happily pushed the trolley back to the car for unloading.

Once home, he wanted to kick off his big boots and relax in den on his settee and watch Robbie Williams. He dozed on and off all afternoon, but ate all of his lunch which was surprising after the large slice of chocolate birthday cake that he had already tucked away that morning.  He did not wish to go anywhere else all day and fortunately, we had no further plans ,so he could get his own way pretty much.

He has a day with Yorkshire Grandma today which he will enjoy. Last week with her he voted with his feet : he refused to get out of the car when she took him to the lake to feed the ducks, it was clearly not what he wanted to do that day. She had not had a refusal really before and she sent me a text to tell me that he would not get out of the car. I  replied to tell her that it was not what he wanted to do then and to try another activity and he had no hesitation in getting out of the car when she pulled up outside one of his favourite cafes. I love that he is expressing an opinion and making choices these days, the days of the passive, compliant Joshua seem to be behind us now. While it can be more difficult to entertain him, at least now we now know what he is happy to do.

He will have another longer day at his new adult respite provision on Tuesday, so that we can build on last week’s success and hopefully he will be less shy with them this week as he builds up his confidence. Then from Thursday, we have some family time off together for the long Easter weekend and we will have a few days away together, before he heads back to school for the Summer term, unbelievably. It is a short term , so he will soon be on May half term holidays and then they slide towards the long summer off, in a blink. Then Joshua’s last year of school looms before us and having resolved the respite problem now, we need to build ourselves up to  some visits to local daycare providers… There is yet more transition on the horizon!

Welcoming Committee

Joshua should be a doorman or have a role in hospitality in the future. For the second time, he visited his Granny in hospital yesterday and this time we were there for over an hour and once again, he excelled himself. This time we took Joshua’s Dad with us and he tends to lean on my husband when he holds both of our hands, so as we left the car he was walking badly. I asked my husband to let go of his hand, so that he had his left hand free for waving. Sure enough, when just holding onto me, he began to wave every patient, nurse and visitor that we passed on the way to the ward.

He was excited to see his Granny but she was in bed this time, so he sat on a chair next to her bed. He tried to catch everyone’s eye on the ward, to give them a cheery wave – mostly the nurses were too busy to notice but he was persistent and eventually it paid off. He found the ward telephone and pretended to make a few calls then he tucked into Mum’s satsumas and grapes, while his Dad ate her biscuits. He was not restless, but he settled into the role of hospital visitor and was good as gold. he only needed to watch one of his iPad movies after 45 minutes and he tried to muscle in on Granny’s bed, to get himself more comfortable! But she stood her ground, and he perched on the end of her bed.

As we decided to leave the ward, because Mum had had enough rather than Joshua, Joshua gave her a wave and tapped his chest at her, indicating that he loves her. Then as we walked out, he waved at every single bed in the ward; he got a few waves in return, mostly from visitors but one other from the patient in the bed next to Mum. It felt to me as though he was spreading some of his special magic and sunshine amongst these poorly elderly ladies. He knows how it feels to be stuck in a hospital bed and so he seemed to be showing empathy with them and was trying to show encouragement. His waving continued from the ward, all the way back to the car and I saw the smiles that he brought to most people’s faces, which in turn, made me smile. What a gift that is that Joshua possesses. I know that I aim to make people smile when I meet them too, but he seemed to have a great knack that generated a smile, without him saying anything and it definitely takes me a bit longer. I am sure that he has found his calling.

Pay it Forward

When we are young, our parents take good care of us: they feed and clothe us and have our best interests at heart, even if you do not always agree with their choices, it is said that they know best. Then we leave home and find our own way in life and make our own choices, while they watch on, from afar. At some point, if you are lucky, you get to repay all the care that they showed for you when you were a child and you become the caregiver. While my Mum is is not well, although we live a couple of hours away, I am tying to do as much as I can to help by visiting and fetching whatever she needs. It is good to be able to offer some practical help and to handle some of her correspondance too.

Joshua and I paid her a hospital visit yesterday afternoon and I expected for him to last possibly five minutes in the elderly ward, before he had to removed for bad behaviour, but as ever, he surprised me. As we walked through the hospital corridors looking for Mum’s ward, he waved cheerily at everyone he passed, staff, patients and visitors and in so doing, he brought a smile to many faces. He looked surprised to see his Granny in her nightie, in bed, but he gave her a smile and a hug, then sat on her bed. He tried to catch the attention of others on the ward by waving, but the other patients were too poorly and the staff to busy to acknowledge him. To my amazement he sat beautifully for about 45 minutes – eating Granny’s fruit, laying on her bed and watching Shrek on his iPad, but he seemed to sense that stillness was required. Of course he has plenty of experience of hospital wards and Granny has visited him in most of them, so it was his turn to return the favour. I am sure that he could empathise with her situation and that he was mightily relieved to be walking out this time, still waving at everyone he passed.

Joshua never fails to amaze me in his capacity to weigh up a situation and respond appropriately and once again he showed that he worked out what was required of him and fell into line. He has made me very proud this week : how well he has adapted to his new respite provision, taken it all in his stride and with a smile on his face. It could not have gone any better and we are ready for a longer stay again next week, working towards his first overnight stay in the future. Joshua is quite simply a superstar.