Friday Night at the Movies

Last night we took Joshua to see the new Mary Poppins film at the local cinema. He was excited to be heading out in the dark as this was a rare night out, not seen since Christmas Eve when we went to the carol service I think. We walked either side of him from the car park, with our arms linked as we whisked him along. As I collected the pre-ordered tickets from the machine, my husband waited in the lift for me with Joshua. He was not good at waiting and he kicked the lift until I joined them and we could go upstairs to the screens. He rushed around the cafe bar area while my husband bought us some sweets and I began to wonder if we had made a mistake, how would we be able to keep this lively teenager still for over two hours.

The theatre was not full and so we sat in the most convenient seats , close to the front, rather than climbing the stairs and squeezing along a row unnecessarily. The large screen and the loud sound quality worked its magic and during the adverts he was mesmerised, while tucking into wine gums and popcorn. As the film started, he was excited and kept waving at the large faces on the screen in front if him. He watched most of the film I would say, only around the middle did he snuggle onto my shoulder for a nap, but he woke again and picked up where he left off. He never once tried to stand up and leave, in fact we even stayed and watched all the many credits at the end, and so I consider that cinema visit to be a success.

We three walked next door, arm in arm again, to  a pizza bar where we shared a giant pizza and chips as it was 8pm by the time we leaved the cinema. Still Joshua was happy and waving. We got home around 9.15, which was a late night for him, and we all felt as though we had had a treat. Our previous cinema trips have been less as a whole family, perhaps the last time was when we saw Madagascar three times, on holiday in Canada. As usually I take Joshua with me, while my husband sees some action thriller on another screen. So this was a fun adventure and was certainly very nostalgic of the original Mary Poppins of our childhood, so we all three enjoyed it very much.

I expect that our next family cinema trip will be in July when a new non-animated version of The Lion King is being released. We saw a preview of it last night and Joshua sat up tall , glued to the screen when the familiar music and lines came out of the speakers and the CGI animals looked incredible. So we will definitely be back for that familiar delight in the Summer, as nothing about taking Joshua to the pictures last night put me off repeating the family experience.



Business as Usual

It does not seem long at all since we were putting the Christmas decorations up but now it is close to time to pack them all away again. I know that some people are eager to take them down and get the house  back to normal, but I am not one of those tidy people. I will miss the cards, tree and most of all, the pretty lights on our trees outside as  we  approach the house that never fail to make me smile. I am not convinced that Joshua has even been aware of the decorations , he did not react at all when I showed him our twinkling Christmas tree. I doubt that he is observant enough to appreciate the outside lights when he has come home in the dark.

For Joshua , I think the highlight of Christmas is seeing all of his extended family in a condensed period. This year he spent time with both Grannies, with all three of his Aunts and two of his Uncles and with all but one of his six cousins. He saw them all within three days of each other so it is an intense extended family experience for him and he certainly enjoyed it. When he was at home, he made the most of his ‘Den’, which has been really cosy these last few days with a real fire in there. It has meant that he had somewhere of his own to retreat to when he had had enough company. He would typically spend time with everyone , sitting at the dining table perhaps, but after eating the soup starter or once all of the crackers were pulled, he would take himself off to his den where he had the familarity of one of his DVDs on his own television. Once he was topped up, he would reappear and join the crowd, so that worked well and gave him some freedom about where he preferred to be.

He returns to school next Tuesday. Previous Christmases I have had to try to get him back into the habit of early nights ready for the school routine, but this year he has continued to be asleep between 9pm and 10pm , so that will not be a struggle. He has been enjoying some longer lie ins since new year, he did not wake until 9.30 yesterday, so the earlier starts might pose more of a problem. While he has enjoyed his time at home with us, I am sure that by next week he will enjoy seeing all his classmates and the staff again and will be ready to begin his Spring term and to have some more varied attention and activities. By next week then, with returning to school and all of the decorations packed away and the Christmas chocolate hardly dented, business as usual will resume, it started with my return to work yesterday, as though all of the Christmas preparations , then festivities, were all a distant dream.

Business as Usual

It is back to work today, so it was time to pack up yesterday, to take the decorations down and to clean up after ourselves. My husband and I have got into a routine of the various chores that we each do and he is responsible for cleaning the bathroom, clearing out the fire and setting a new one and yesterday he had to also remove our outside Christmas lights. Joshua was clearly bored waiting for us to get ready as we were leisurely in our approach, which began after breakfast. At one stage, he found me in the kitchen with his splint which meant that he wanted to get dressed, so I obliged and dressed him, but left his slipper socks on rather than swapping them for his muddy boots. When I returned to my chores, he was more insistent and returned with his splint again and so I cleaned as much mud off as I could and put his splints and boots on.

When I went outside later to the dustbins, he sneaked out behind me and began pulling on the car door handle, he was ready to go now. I explained that we were not ready, that I still needed to hoover up, but he was insistent once again. I fetched the keys to the truck and he climbed inside, so I turned on the CD player so that he could be entertained while he waited. We are at the end of the village so there is no traffic and are no passersby, so I was confident that he was safe. I observed him from inside and he was jigging up and down to the music, happy that he had got his way. I vacuumed downstairs and when I was upstairs doing the bedroom, I looked down to see him wriggling out of the car,but still with his seat belt on so he was in a tangle. So ten minutes after he had insisted on waiting outside, he came back indoors.

Joshua then decided to help out; if you can’t beat them, then join them he must have thought as he took the Dyson from my hands. He began to earnestly vacuum the kitchen floor, grinning away, very pleased with himself. I stepped back and allowed him to take over and began to empty the fridge instead and he took the cleaner into the lounge where I could hear him continue to hoover. He made me laugh as when I went into the lounge, he was sitting on the settee, pushing the hoover backwards and forwards in a leisurely pose, so that only one patch of carpet received the Joshua treatment. But I loved his understanding of what needed to be done and his earnest involvement in the family clean-up.

As I return to work today and leave both of my boys at home together, I will miss them both as the joy of Christmas holidays is spending so much quality family time together.

2nd January 1990

29 years ago today, a scared, younger version of me began to work at my company, not knowing what to expect. On 2 January 1990, I showed up for work on a trial basis at a small market research agency, a family firm, as my first non-agency job after university. I worked hard and was given on the job training as I shadowed the owner of the company : he showed me the ropes as I chauffeured him around the UK. I learned from the best, and  we both liked what we saw and hence, I have stayed there so long but I really do not feel old enough to have been working anywhere for 29 years.

When he took me on, I was eager to learn and I travelled a lot of the time, covering excessive  miles in my company car. I almost did not survive my first month, literally, as I wrote off a company car when I ended upside down in a field on some country lanes close to our rented home. Fortunately I walked away from that accident, unharmed and the partners of the business were very understanding. In fact, I was made one of the partners of the family firm within four years of working there. After 5 years at work, I got married and several of my colleagues came to the wedding and we were granted a three week honeymoon to go to the Florida Keys.

Then 6 years after that, I took  maternity leave to have Joshua. So the company had a hard working graduate for 11 years before I was distracted by having Joshua in my life. I returned to work after 7 months off, on a part-time basis, working for just three days a week , while Joshua went to a local childminder, where he grew up with a baby just 6 months older than him. When Joshua went to the local mainstream nursery then primary school, I increased my hours to 4 days a week – just taking Fridays off – but I would finish at 3.30 to pick him up from school. I used to love meeting form school and chatting to his teaching assistant about his day and asking him what he would like for tea, and everyday he would request ” sausages!”.

So both I and Joshua have grown up while working at the same company, so they know us both well. They were understanding and supportive when I took considerable personal leave when Joshua had 10 days in hospital in 2010 for recurrent and uncontrolled epilepsy and again in 2014 when he had brain surgery at Great Ormond Street Hospital. I always joke that I could not have managed Joshua’s health needs if I had had a “proper job”. I have lost count of the number of times that I have had call from school to tell me that he was fitting or had been given his rescue medication close to home time, so needed bringing home. On those frightening occasions, I have just left my untidy desk and run out of the door and nobody has ever questioned me about it and for that, I am truly grateful. Just last October, I had one of those calls while I was working in London and I had to get up north by train to meet Joshua in A&E, so it is still happening. As a family firm, it is understood that my family will come first, ahead of anything else.

So today I think about the day that I began this adventure and about how much has changed during those 29 years. Nobody could have predicted the twists and turns that my life has taken and I look forward to seeing what lies around the corner too!

A New Start

New Year’s Day represents a new start, a clean sheet and an opportunity to change from how we were last year. Every year I plan to get fitter and slimmer- and this year is no exception – and most years I end up heavier than when I started – so lets hope that this year can be an exception! But I did make significant strides towards fitness in 2018, with regular swimming. But in 2019, I also want to protect my mental health and maintain it. I plan to do that by surrounding myself with people who are good for my mental health and by doing activities that I enjoy, that make me happy. Hopefully that will be enough, coupled with healthy eating and sufficient sleep, to see me through. I plan to fill a jar of ‘good things that happen’, to review at the end of 2019 and I think that it will soon fill up, as my standards are not unrealistically high : I am delighted by small gestures like letters from friends or by Joshua attaining a new skill.

Speaking of which he did that just yesterday but it is going in the 2019 jar : he has three favourite films stored on my iPad and he constantly brings it to me to be turned on ,so that he can watch one of them. Yesterday I showed him the three film icons and asked him to point at the one that he wanted – as I usually select for him the film that he has not watched most recently. Using his index finger, he very clearly tapped the screen in the movie that he fancied watching. Why had I not thought of that before? such a simple thing, but I had never asked him to tap before, I had often asked him verbally which film he would prefer but I rarely got a response. Joshua is going to be given more free choices during this year and let’s see how that goes. But in the meantime, this new skill is going in that happy jar, so we are off to a great start.

So Joshua and I are all set with our new Year’s Resolutions, how about yours? Happy New Year, lets make it a good one, without any tears.

New Year’s Eve

Today is New Year’s Eve, when we traditionally look back over 2018 and review what we have done but look forward to 2019, with hope. My wish for 2019 is that we successfully get through Joshua’s Transition from a child to an adult of 18. That we are smoothly transferred into new respite provision and that our new epilepsy nurse and consultant are helpful and that they have time to learn to get to know both Joshua and us as a family. It means that we are on the brink of an even bigger change, when in 2020 he has to leave school and transfer into some kind of suitable daycare alternative too, but I definitely do not have to think about that too much yet. So the next year and the one after, threaten to be a challenge more for me, who dislikes change, than for Joshua, who has shown himself to be pretty adaptable over the years. He has taken new schools and teaching assistants in his stride, as for him,  it seems that once your are out of sight, then you are out of mind. I do not think that Joshua has the capacity to reminisce, whereas I spend a lot of time looking backwards – probably more than I should, as demonstrated by my love of watching videos from 2001 and 2002 just this week.

2018 for me is a year that Joshua has expressed his personality and he has refused to be passive any more. Joshua has developed behaviour that we have only ever seen once before in his life, and that was when he was younger and had an aggressive reaction to an anti-epileptic drug. But this year Joshua has kicked doors and even ankles, in his desire to communicate. He has, unusually,  spent very little time asleep during the day, with waking up 7ish and rarely needing to rest on the giant beanbag set aside for him at school. He has been too busy to sleep, he has had chaos to wreak.  While last year, Joshua amazed us with some of the words that he was using and imitating, in 2018 he has been less vocal and definitely more physical I would say.

This year Joshua has suddenly taken an interest in hoovering and sweeping up and he has begun to pass me things to be helpful, such as his yogurt pot at bedtime or his splints when he is getting dressed in the morning,so he is demonstrating that he understands more about his routine finally, about what comes next. But he has also been much more restless, his attention span seems to have reduced for favourite pastimes, perhaps after 13 years he has finally got bored of the Live 8 show and Madagascar, as they do not mesmorise him like they once did.

Who knows what will come next in terms of Joshua’s skills or what he chooses to show in terms of his personality, as he likes to keep surprising us. Whether it is good or bad, I have no doubt that Joshua will continue to keep us on our toes. There is never a dull, predictable day when Joshua is your son.



Lending an Ear and a Shoulder

We went out  yesterday for a beach walk with the dogs as it was a bright, breezy day with blue skies. We parked close to the beach and Joshua virtually ran to the shore. It was busy with dog walkers as we had all had the same idea, so Kevin got some socialisation training. We went at Joshua’s pace and turned around when he was ready to, but close to the slop back to the car, Joshua struggled in the soft sand. He protested by throwing himself on the ground and lying down on the sand. I threw sticks and stones for the dogs to fetch for a while and then I used bribery to encourage him to get up, by saying ” Oh well, if you are too tired for Donalds then, we could just go home again?” The magic word had him shrieking with joy and he willingly accepted assistance to get up again as he rushed to the car, shouting for ‘Donalds’.

So we went to Donalds for lunch and it appeared that he was ravenous. He could not bear the wait for his food to be ready and so he shuffled along his bench seat to get closer to the table next to us, where a girl with cerebal palsy was enjoying a Happy Meal with her mum. Joshua was stretching out to try to reach her fries and of course I apologised and swapped seats with him so as to block his view and reach. Finally his own chicken strips and chips arrived and he tucked in, eating everything.

As the lady next to us stood up to put on her daughter’s coat, my husband remarked at the wheels on her wheelchair and it was as though he had opened some flood gates : she told us all about the wheelchair assessment that had been made, the cost savings that Wheelchair Services had tried to make, the battle that she had had to get what she wanted and how much worse Adult Services were than children’s services. She hardly stopped for breath and my husband nodded sympathetically, then ran off to a neighbouring shop leaving me to listen to her, while Joshua finished his lunch. She told me about the other battles that she had had during Becca’s life, how she did not realise at the outset that nappies were provided free of charge and how her social worker had left her to struggle as she had appeared to be coping. I heard about how her husband had left her and the difficulties that she had had returning the motability car as she did not drive.

I gave her as much of an audience as I could as she clearly needed to unburden herself, but once Joshua had eaten his last chip, he was ready to go too. She continued to talk as I struggled to keep him still to put his coat on and finally I managed to jump in to tell her that it had been good to meet them both and that we were leaving. This mother had needed to talk yesterday and so I was happy to listen for as long as I could. She apologised for talking so much as we were leaving and said that she was famous in the town, that social workers allowed double appointments for her home visits. I know what an isolating experience being the mother of a child with special needs can be and clearly she had a need to unburden herself at that time and I looked like a willing listener.   I hope that I was able to leave her feeling as though her problems had been shared and halved.