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.

Family Christmas 2018 Part III

I laughed a lot yesterday and we had another great day. The main things that made me laugh were :

  • We played a game of ‘Pass the Brussel Sprout’ at the dining table after our lunch and everyone joined in. As we peeled off the layers of tissue paper when the music stopped, there were sometimes surprises like you would find in a cracker, but forfeits on other layers. My brother in law had to shout out Christmas words throughout the game and my niece’s boyfriend did an excellent impression of a melting snowman. I had to go outside and sing ‘Jingle Bells’ to the neighbours. Joshua joined in and threw the sprout, rather than  passing it, but he enjoyed the merriment.
  • Granny had brought another festive game where we threw soft sponge Christmas puddings at our guests in a velcro covered cap, until they had them stuck to their head. They looked hilarious too. Again it was a game that Joshua could join in, he loves to throw a ball, even though he was not clear over who was the target.
  • Joshua alternated between wanting to be with us and taking himself away for some quiet time alone. But when he did join us, he wanted to be in the thick of the party. He frequently jammed himself onto a settee where there was not really space for him, virtually sitting on knees. He played to the crowd : waving, high 5ing and there were a few attempts to flash his tummy, but they were discouraged.
  • Last year I bought my husband some red velvet boxer shorts, with a white trim, as his Christmas pants and he dug them out again this year. With very little encouragement, he would reveal his Christmas pants to our guests!
  • I love the face that Joshua pulls when he is pulling crackers : he closes his eyes and grins, but it is also a grimace with the effort and concentration of tugging the cracker. We had more crackers yesterday, as they are a great way to keep him at the table but once he had eaten his soup again and seen there were no more crackers, he retreated to his Den.
  • I was amused to see just how much my niece loved Kevin on her long-awaited first meeting of our jack russell puppy. she said that she had high expectations, but even then, he exceeded them so that is a real recommendation! He was well cuddled and admired and of course, he loved the attention. I had to check her bags when they were about to leave, to check that she had not packed him to take home with her.

All in all, it was a very happy day and we were very lucky to be able to share it.


Family Christmas 2018 Part II

I was awake early on Christmas Day as usual, but went back to bed at 5 ish for some more sleep and that time , I slept in until 8.30. So when I came downstairs, my husband was already downstairs preparing the turkey for the oven.A bleary-eyed Joshua followed me downstairs soon afterwards, oblivious of the day and demanding some porridge, ahead of anything else. The turkey timings were such that we were aiming for Christmas lunch at 1.30 which seemed very civilised. Mum went to church on her own, while my husband and I dug up home-grown potatoes, leeks and carrots for our festive lunch and Joshua rejected the Christmas TV on offer, in favour of Madagascar for a change!

We began to open presents in the lounge, each having a pile of parcels on a different chair to tackle. Joshua reluctantly joined us, so long as the ipad came too. But he enjoyed playing fetch with the dogs , who each had a new squeaky toy to play with, so that kept him amused while I opened some parcels for him and shared the contents with him. Granny joined us when she got back, she began to open her parcels too, while the turkey cooked nicely. Before we knew it. it was midday and time to allow the turkey to rest and start the vegetables. It seemed to be a very calm process and the timings all came together just right. We had homemade and home grown leek and potato soup for starter and the ingredients could not have been fresher.

Joshua joined us for the soup course as he loves soup and we kept him busy with pulling crackers : he must have pulled about 8 crackers , both ends, during the starter course. He is not interested in the prize or joke and nobody is allowed to wear a paper hat – they are ripped off your head as soon as he sees them.But he loves the pull – he has a funny grinning, eyes closed pose – and the bang of a cracker and always has done. But once the crackers and soup were finished, Joshua wandered off, showing no interest in the main course of the meal , so he missed out on the charades that we shared from the crackers. However,he returned for some Christmas pudding with brandy sauce.

We cleared the table and loaded the dishwasher, then headed up the lane for a dog walk with Joshua in his wheelchair. It was grey but not wet or too cold, but after a quarter of a mile, he began to stamp on the footplate of his chair, insisting on turning around. I took him back home with Ruby and immediately the stamping and protesting ended,and were replaced by happy noises and jiggling in his chair, while the others walked further on. Joshua was delighted to get home again, where I put the kettle on. We watched Jungle Book on the television with a cup of tea, but Joshua withdrew to his den with his choice of viewing on, so I grabbed 40 winks, before he cuddled in and had a few small seizures. Perhaps he had felt those seizures approaching while on the walk?

We returned to the lounge, minus Joshua, to complete our present opening and play with our many presents .Before we knew it, it was time to prepare our evening meal of salad, cold meat , cheeses and mince pies, even though we thought earlier in the day that we would never eat again. After clearing away, it was bath time then Joshua got into his new Christmas pyjamas and came downstairs to show Granny how well they fitted him. Around 9.45, Joshua finally settled back in bed, allowing me and Mum to enjoy , and cry at, ‘Call the Midwife’ on catch up TV.

All in all it was a great day full of food, presents, laughter and happy times. Today we get to do it all again, as my sister and her family are joining us today for a repeat performance.

Merry Christmas

Well it is finally here after weeks of preparations, it is Christmas Day. I am not sure how much Joshua knows about what is going on : he must realise that he has been wearing his festive knitwear for a month now, it is special because Granny has come to stay, we have fairy lights up everywhere and yesterday afternoon, we went to a lovely carol service. The church was full and we saw several families who we know, which always makes you feel like you belong to a community. Last year Granny almost set herself on fire with the candle that she was holding while juggling her carol sheets and she had to stamp out the flames on the floor, so it was no wonder that this year, the children had battery-powered candles. We sang familiar carols and watched the children assemble a knitted nativity scene , so it was a lovely service.

We wedged Joshua into the pew between me and my husband  and he behaved well. He seemed to enjoy the antics of a naughty toddler in front of us, as he does enjoy watching someone else misbehave and then get into trouble! We came home to watch nostalgic Mary Poppins on television, but while we were all singing along to the familiar songs, Joshua wandered off to another room where he preferred to watch Madagascar for the millionth time.

There are just four of us, unusually, at home for Christmas lunch today but we double our numbers tomorrow when my sister and family arrive, so we will have two Christmas lunches with crackers and I am saving the party games for tomorrow’s guests. Joshua will not be impressed by the large pile of gifts that are sitting in the lounge, waiting to be unwrapped, as we each have a chair with our parcels laden on it. For Joshua, unwrapping presents is a bore but hopefully he will get excited by some of the contents.I see that Christmas Eve boxes, usually containing Christmas pyjamas, have become a thing now but we have not partaken, as that would double the present opening trauma for him. I however , am writing this while wearing my new Christmas PJs, so I am embracing the traditions of carols and pyjamas.

I wish you a very merry Christmas, surrounded by your loved ones.

Family Christmas 2018 part 1

Yesterday was the first of our family Christmas gatherings as my in-laws family met up to celebrate at my sister-in-law’s house for lunch and a family party. It was a very wet, almost two hours drive to get there and we were last to arrive. Joshua was greeted by two aunts, four cousins, one uncle and Nanna. He took it all in his stride and wandered around at first to acclimatise and then he sat on the settee waving and pointing and then trying to trip up whoever walked past him., which is a joke that he never tires of. It became a game with his youngest cousin who jumped over his outstretched leg, like she was horse-jumping and both of them found that to be hilarious.

When the food was ready, I collected him a plate of lasagne from a well-laden buffet table but he refused it and would only eat endless Pringles, followed by a creamy trifle. After lunch, his cousins all did a range of crafts around the table, building then decorating gingerbread houses, decorating baubles for the tree and bunting too. Joshua hovered around the table to see what was so interesting but he declined to join in and he returned to the settee where he played with his Nanna by stroking her hair, trying to remove her glasses and by lifting her jumper at the back, then finally he snuggled into  her tummy for a nap while she twiddled with his hair.

Towards the end of the afternoon, Joshua became more restless so I found the iPad so that he could sit quietly watching Shrek II. What I did not expect was that his youngest two cousins would enjoy the film too, so one of my favourite moments of the day was when all three of them sat together in a huddle on the floor to watch the film.  Joshua joined in more than in previous years, even if he did not know what the games were : he too threw inflatable hoops, although he was not aiming at the inflatable antlers on his cousins’ heads. He giggled and watched as his cousins crawled along the floor towards my husband who was the sleeping bear guarding the keys, trying not to be detected. Even the activities that he could not access, Joshua enjoyed watching others having fun.

It was  a fun day and it started the family celebrations off well. Little did Joshua know that Granny was waiting at home for him when he got back, so that was the icing on the already tasty cake!


Joshua appeared yesterday morning in a lively mood at 7.30, despite my telling him that he could enjoy lie ins during the school holidays. We were dressed and out of the house by 9.30 ready to begin the day’s adventure.We drove to my friend’s house where we swapped cars, I was keen to have a cup of tea before we set off and Joshua made the most of the break by playing their guitar and banging their kitchen door, so I thought we might have had some trouble ahead. But he sat nicely in the back of the car, apart from trying to remove his companion’s glasses and stroking the driver’s hair!

We parked easily close to the theatre so went to have some lunch before the matinee. We found a great student bar which sold pizza by the slice and amazing chips, so we were all happy and tucked in. We bought some chocolate for pudding and waited in the foyer of the theatre for the lady with out tickets. Joshua does not wait well and he was kicking his leg out, while in his wheelchair, kicking ta the wall and at passersby. He has such long legs that he has got a surprising reach. So I feared that he might be too lively to sit still for a couple of hours in the theatre. But we got our tickets and found our seats, which had a great view of the Shrek stage. The orchestra soon started up and Joshua was immediately mesmorised by a live Shrek, Fiona and Donkey. My busy boy sat beautifully and enjoyed the show. Towards the interval he tried to grab a nap but could not decide where he was most comfortable. He took great please in poking and kissing my friend awake, as she nodded off several times but took the rude awakening in good cheer.

I thought that I might have needed to walk a pacing Joshua around at he interval but he was so comfortable that we stayed in our seats. There were just a few occasions when he tried to stroke the lady in front of him’s hair and when he tried to grab a lady who squeezed past him in his seat, but luckily he was intercepted both times. But all in all I would say that he really enjoyed it and that he behaved pretty well. We were sitting with a group of children with special needs and their families and there was surprisingly little noise or disruption from our rows. I received a pat on my arm and was wished Happy Christmas by a lady in front of us, who may well have been listening into our conversation during the show. We were happy and full of Christmas cheer so there was no need for any sympathy from anyone, we were much better off inside the theatre being entertained rather than pounding the streets for last minute shopping – then Joshua would have objected spectacularly and I would have needed more than a reassuring pat to my arm. It was the best way to begin Joshua’s Christmas holidays, with a present that he enjoyed and did not have to unwrap.

Tokens of thanks

I took Joshua into school for his last day of 2018, as I was hosting a parent coffee morning too. I made a coffee cake for 6th form staff as an unexpected thank you for them and it seemed to go down well. We debated teacher and class presents during the coffee morning as the Mums who attended had all done something different : some had bought biscuits for the class and others had bought chocolate for those that they share their transport with. At a special school we have more day to day contact with the driver and passenger assistants than with school staff and so they tended to be the ones who were rewarded with gifts.

I also thanked Joshua’s taxi driver and escort with home baking : I made some chocolate brownies and put them into a Santa shaped cookie jar. The man who has been our taxi driver since September is retiring sadly so that was a find farewell last night. He has been a perfect combination for us as he has talked to Joshua, not ignored him as some do,yet he has not chatted too much to us as parents. he has got out of the car to help with loading the wheelchair, whereas many say that is not part of their role. And most importantly, when Joshua started fitting in his taxi, he remained calm, followed protocol and he timed the seizures while driving him back to school, as agreed. So all of that was worthy of thanks with some home-baking. Who knows who we will be allocated in the new year, we will just wait and see who turns up! But there will be continuity with  the same passenger assistant who will be able to show the new driver the ropes.

I am not sure if Joshua realised why I was asking him to thank the taxi driver particularly yesterday, but he ran indoors quickly anyway, keen to get his helmet and boots off and to be able to relax after a busy day meeting Father Christmas. He brought a school present home and it has gone under the tree, rather than it being opened at school. I am not sure that Joshua knows that he now has over two weeks off school on Christmas holidays but he will start to realise soon when he goes to a family party on Sunday and when Granny arrives to stay. But we are starting the holidays off with a bang, as we are off to the theatre today to watch Shrek the Musical, which I am really looking forward to. This is his Christmas present from me and for the two good friends that we are going with, so let the festivities begin!

Holidays are coming, holidays are coming

I finished work for my two week Christmas break yesterday so I spent the day tying up loose ends and preparing to be away. I know how lucky I have always been as out offices close for the festive period, so I have never had to work between Christmas and new year. I know from experience that it will fly by faster than any other holiday. It is always a busier holiday than any other so I think that is what makes it go quickly, there is the run up to Christmas and then that lull before New Year and then bang, it is back to work. I joined my company on January 2nd 1990, so I am about to have my 29th anniversary, which seems ridiculous to me as that is a lifetime! How much has changed during those 29 years? I arrived newly graduated and keen to progress and learn, I had no idea back then that I would stay as long as I have. We got married after 5 years at work and bought  a house in the town where my office is, so I have a four minute commute, and we both worked hard, both doing more than our share of travelling for work. Then after 11 years, I took maternity leave to have, and then look after, baby Joshua.

I returned to work, for three days a week , when he was 6 months old and he went to a local childminder who had her own son who was 6 months older than Joshua. They all had fun together and that arrangement worked well and I had hoped that this would represent my permanent childcare solution. She took maternity leave to have her daughter and during that time, Joshua attended local nurseries, which he did not settle at and so it was with relief that he resumed his time with his childminder. That continued well until her mother died, leaving her an inheritance, and the family bought a retail business and she stopped being a childminder , sadly. So it was back to nursery until Joshua started at mainstream nursery school, which both he and I loved.

At that stage I increased my hours to four days a week and that has continued that I take Friday’s off. These Fridays are very precious to me, I have never been keen to resume full time hours. The plan is that my Fridays are ‘me time’, to use as I choose. Today for instance I am at school this morning for my monthly coffee morning, then I will do a supermarket shop on the way home and this afternoon, Joshua’s social worker is coming round. But they are not all like that, having last Friday off meant that we could enjoy a long weekend away and I have booked to go and visit two friends in the new year who I have not seen for many years. During term-time Friday is a day without Joshua at home, so whether I am doing things on my own, at school, with my husband or friends, it tends to be a Joshua-free day.

It is the last day of term today for him and so it will be my last Joshua-free day for two and a half weeks, which will be fun. I know that he enjoys school so now that he is busier and  more active, we will see how we all get on. He will enjoy the family-together time, although he will probably be less tolerant of the inevitable time that will be spent in the kitchen in the build up to Christmas, as he is less willing to watch from the snug, these days he comes into the kitchen too and stands very close, demanding cuddles and wanting to help by opening and closing drawers and cupboards for me. He used to be oblivious of what went on in the kitchen now it is a source of interest and also annoyance, as it is somewhere where he does not get full attention. He used to have long teenager lie -ins , so you could get on in the morning, but more recently, he is too busy to stay in bed and he usually appears around 7ish, ready to attack the day at full pace.

So today is the first day of my Christmas holiday…bring it on!





is day one of my Christmas holiday…bring it on!

List for Santa

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!

Festive Fundraising Over

The school fundraiser was a big success yesterday and I was delighted to have been involved. When I arrived at school, already each classroom had a table outside displaying their festive treats that they had created : Christmas buns, cards, candles, elves, calendars…there was no end to the festive merchandise and it was all beautifully displayed too – I was stunned by the classes’ creativity. I walked around to the dining hall where the cake bake stall was set up but lay pretty empty with just two contributions on it. I added my own baking and I asked some of the classes if I could add their buns and mince pies to my table, rather than filling their class displays. By the time parents started to arrive, the cake bake stall was fully stocked and it virtually was all sold by 11am.

Two 6th formers appeared to help out and we had one with us, who offered to make hot drinks for the visitors, which was a great help. He earned his keep as it was busy at times and he took his reward in yule log! The other 6th former manned the ‘cinema’, giving out tickets and selling popcorn to see a short school film that had been created. I sneaked a peek at the film at 11am during a lull and it was so brilliant that we asked to see it twice. It featured pupils and staff set to music and it showed school off at its best, as they acted out friendship and helping one another – of course it made me cry.

Joshua appeared early on and I gave him £5 to spend on the stalls and he had a good look around, before coming back to me with his purchases in exchange for a hug and some lemon drizzle cake.

It was not just parents and classes who came to the fundraiser, but we had visitors from both staff and School Councils from some of the other schools in our Trust, who wanted to look around our school, so it was a showpiece event too. I am sure that they were impressed by what they saw, as everyone threw themselves into the morning’s festivities. I believe that around £400 was raised for school funds too, which was a great morning’s work and there were lots of smiling faces too. So now on Black Friday, Christmas really got underway at school.