Cafe Culture

It is the simple things that make Joshua happy at a weekend and yesterday, we made him happy. First of all we all three went to Tesco and he behaved really well : he pushed the trolley most the way around and he did not try to run away at all. he sat beautifully while I unloaded the trolley on to the conveyor and then almost until I had finished packing my bags. He waved goodbye to the young female sales assistant, but she missed it so I asked him to wave again when she was looking, and instead he gave her a shy, sideways glance that melted my heart, but she missed it.

He had definitely earned himself a treat so we went from there to a local cafe for an early lunch and we sat down in a booth. He was very excited to be there, grinning at all the other customers. He perched on the edge of the booth,  so I had to ask him to ‘hooph up’ to make room for me – it is a game we play and he knows what to do, although he giggles as he shuffles up just a centimetre or two at a time. On a slidey, plastic bench it is easy to shuffle him along with my hip, but this was a thick cushion and so I could not slide him, he had to make room for me. I ordered our brunch and he watched the waitresses buzzing back and forth, until our drinks arrived. He took a sip of his juice but thought he was hilarious to steal my malted milk biscuit from my saucer and to pop it into his mouth whole, indicating that he was felling both cheeky and hungry.

Before too long, our meals arrived and we all tucked in. I tore Joshua’s cheese and ham toastie up into smaller pieces so that he could help himself, and he tucked into the tortilla chips while his french fries cooled enough to eat. I like him to eat finger food as he can choose what he wants to eat himself  and pop it in when he is ready, rather than being reliant on me to help and leaving me free to enjoy my meal. He ate most of his lunch, grinning away throughout the meal so I know this felt like a real treat for him. After that excitement, we headed home  again to enjoy a quiet afternoon at home. Once he kicks off his boots and splints, that suggests that Joshua is in for the rest of the day. There was an old song,by Paul Young when I was young “Wherever I lay my hat, that’s my home”  , but in Joshua’s case it is ‘Wherever he lays his boots and splints’! He enjoyed his short trip out, but he is always delighted to come back home.


My Home Boy

Once our ferry docked , I knew immediately that I wanted to see Joshua as soon as possible again. So when I got home, I told Yorkshire Grandma that she could have the night off as I would meet Joshua after school – she had kindly been house and pet-sitting for us while we were away. By the time that I had talked to Yorkshire Grandma, walked the dogs who were very excited and bouncy to see me and taken a shower, I was not in work until almost 10 am, handing around Toblerone to my colleagues. So I had a short day, as I left at 3.30, to be ready to be home to greet our son, who I had not seen since last Thursday – which seemed like an eternity.

He gave me a little wave from the back of the taxi, and if he was disappointed that I was not Yorkshire Grandma, he did not show it, even though I had to ask for a hug, but then he was generous with his hugs once we were inside. He walked through to his den, where I followed the routine to remove his splints and boots and then I turned The Show on, as he had not seen U2, Coldplay or Travis since Friday  morning. I then set about preparing his tea and when I tool his medication and yogurt through to den, he was already curled up on the settee, contented to be back in his own, familiar space. He had a short nap while I prepared his food, but he came into the kitchen and gave me a hug to let me know that he was awake and ready to eat.

After his meal, I let the dogs in from the garden and they all jumped all over him, pleased to have us both home again. Joshua seemed to enjoy the wriggling black puppies clambering all over him and licking his face. They had clearly missed Joshua too and I enjoyed watching the reunion.

Joshua has not yet come to terms with the shower at his respite provision and so he needed a hair-wash and bath, so we did that early. After the trauma of having his hair washed, Joshua relaxed into his bath, so much so that he struggled to keep his eyes open, even though it was still early. So I helped him out and changed him into his pyjamas and he had an hour curled up in bed, while I unpacked and prepared our evening meal. Joshua reappeared after his doze, when my husband came home and he was happy that we were all reunited and back where we belong. Joshua has taken the new respite provision in his stride and I am delighted about that, but he is, and always has been, a ‘home boy’ at heart.

Ey Up

Yesterday was Yorkshire Day and I am proud to say that Joshua is born and bred in Yorkshire, he has known no other home. Whereas my husband and I are both interlopers, we moved here for jobs back in 1989, a mere 30 years ago! My boss was from across the pennines too and he explained that even after living in the same town for  around 40 years, and bringing up his three children in Yorkshire, he would never feel that he was considered to be a local. Yet my husband and I have now lived here longer than anywhere else in our lives : I lived for the first 11 years of my life in Scotland and I remember my Scottish childhood very fondly; my traditional primary education stood me in good stead, particularly in maths. Then I moved to Cheshire for my secondary education, for 7 years before moving away for four years at university. Upon graduation, my husband and I set up home in Yorkshire, where he was offered his first job.

We moved 150 minutes drive away from where both sets of parents lived, to pursue our careers and in 1995 we married and bought our forever home here. That choice did have implications however , particularly when Joshua was born.We did not have any grandparents or Aunts on the doorstep, to be able to help out with raising and caring for the new addition to our family. My parents stayed with us for a while once we came home from Special Care, but it was not easy as it meant  them being away from their home. We had many weekend visits and overnight stays for Christmas as Joshua grew, but I was always envious of those families who had grandparents on the doorstep; those whose Granny was able to pick the children up from school occasionally and take them home for tea and those whose grandparents attended sports day to cheer on the next generation in races. Thankfully we have been blessed with Yorkshire Grandma who has been a local presence in Joshua’s life, for all of his life and she has fulfilled the role well and supports us as though we were her family.

Being local would have been easier in terms of childcare certainly, but also, when Dad became ill with dementia, it would have been much easier for me to support Mum better in her caring role if we had lived a few minutes away, so that I could have called in regularly and to have offered more practical help. When Mum was in hospital, I visited a couple of times a week, whenever I could, but I would have liked to have called in everyday ideally. We made a choice many years ago about where to work and live, without knowing what the future held, and we have made the best of it.

In the meantime, thank you Yorkshire for giving us a home, for making us all welcome.

Back Home

Joshua had a much quieter day yesterday: after his long walk the night before and not getting to bed until 10.30 pm, he slept in until 9.45, so he was worn out. He gave me a big smile as I walked into his bedroom to see if he was OK, so that was a better start to the day. He enjoyed a bowl of porridge in bed and lay watching his Live8 show for a while, before coming downstairs, which was a further indication that he was feeling better and more relaxed than on Saturday. So I was delighted to see that the Incredible Hulk had only made a brief visit to our family.

My husband and I had gardening chores to complete yesterday at our cottage, as we had not been for so long, so the hedge was wild and the grass needed cutting too. Joshua was settled indoors, so my husband cut the hedge and my job was to collect the trimmings and remove them to a bonfire pile. We worked hard and well together , in between regular checks to ensure Joshua was OK, and as we were nearing the end, I mowed the lawn to pick up the small pieces of hawthorn. We were pleased with our handiwork but worn out when we had finished, around 3 pm. We had a snack lunch at home – our neighbour had kindly brought us some fresh eggs from her hens and a slice of chocolate cake each, so we enjoyed them for lunch. Then we needed a little  lie down to recover, but of course Joshua was well rested and so he did not comply very well with the siesta-plan. Eventually I persuaded him to snuggle into me on the settee, and we had a lovely nap together, like old times.

When woke up it was time to pack up and clean up the cottage, ready to go home, as although Joshua is on school holidays, we are both working for the next two weeks until our family holiday. Joshua will spend his days with Yorkshire Grandma and I am sure that they will have some fun. She will arrive this morning at 8.30 and no doubt she will already have a plan which is based upon the weather forecast. We arrived home at 10.20 last night and Joshua was clearly delighted to be back, he was beaming, even when I took him straight upstairs and changed him into his PJs. He snuggled down into his bed and looked very contented to be back in his own bed and I have not heard a peep from him all night. Most people love some time away, a break from the normal routine, but Joshua has always preferred coming home to going away, which is lucky as he spends more time here than anywhere else. He is not upset by change, but he does love his home comforts and his own spaces of his bedroom and his den. As he walked in last night, he looked at himself in the mirror in the hall, and tapped his chest , indicating “love”, so he loved being home again, which made me happy.

There’s no Place like Granny’s Home

I stayed last night at Mum’s house as I need to be in this area for work and as it is still the school holidays, Joshua came with me to see his Granny. We drove across in the afternoon and he was very excited as we pulled into the drive. He burst in through the front door and immediately pounced on the piano, banging out a welcome tune with a flourish. I had just five minutes to brief my mum, then I left them to it as I went to my meeting, Granny was cutting up some apple for him as I left.

Joshua was delighted to see me two hours later when I got back and it sounded as though he had been full of beans, there were coasters and cushions scattered on the floor of most downstairs rooms. I sat at the kitchen table drinking my cup of tea, chatting, when we heard footsteps overhead. I went upstairs to find the culprit and Joshua stuck his cheeky head out of the door of the spare room, where he was clearly about to strip the bed. So I brought him back downstairs, where he began sweeping the hall carpet. The only time that he sat still was two enjoy his homemade fish pie – he had seconds! – and then he was busy again.

I decided on an early bath to settle him down, where there was rather a lot of splashing, so we went staright from the bath across the landing to bed and some calming stories. He snuggled down and I lay next to him for a while, and it seemed as though he would fall asleep. I was dozing off myself when I remembered he had not had his bedtime medication, so I crept downstairs to get it. I met a stripey-pyjama clad grinning young man on the stairs, heading back down to say hello to Granny, on my way up, so I managed to turn him around and we went back to bed together. Whether the melatonin did its job or he just admitted defeat, I am not sure but there were no more jumping-out-of-bed incidents and he settled  down to sleep…

Well until some time in the midle of the night, it was still dark, when he found me in my single bed and climbed in too. It was quite a squash but we both went back to sleep and he is still there now.

“Your Josh”

As I left to pick Joshua up from respite, I was fairly certain that he would be pleased to see me but I underestimated by just how much. When I arrived he was sitting on his own in the conservatory, and  a member of staff said that he had just had to tell him off using his full name, for hiding the landline telephone again! As I came out of the darkness for him, repeating his full name and wiggling my finger at him, he was squinting, trying to see who it was! It was only when I got closer that he recognised me and he leapt off the settee and ran towards me, beaming. He squoze me tight and would not let go for ages, grinning from ear to ear.

He ran down the corridor towards the exit and leapt into the car, I do not think that he had had a bad stay, just that he knew where he would rather have been this weekend. He shut the passenger door behind him leaving me to load his luggage and wheelchair. When we set off, he kept grinning at me, getting his face really close to mine and he said ” Your Josh!” and I agreed, that he was indeed ‘My Josh!’. For the first 45 minutes of the journey home, he was very giddy, talking constantly, high-5ing and eating an apple and a packet of crisps. Then he suddenly drooped and went sleepy, but he had second wind when we were almost home, as he recognised the familiar roads and he began shouting “Back home!” adn got excited again.

When we pulled into the drive, he did not wait for me to shut the gate, but he leapt out of the car and ran into the unlocked house. He scanned the house, going into every room and playing with everything briefly – so at one point he was playing the piano, with Robbie Williams singing in the background, with Shrek on the ipad and the cordless hoover both lying on the floor and surrounded by tennis balls to throw for Ruby. There was absolutely no doubting that he was happy to be home. He devoured his lunch and then wondered about a nap,but was too busy to fit that in.

I love how Joshua shows his affection and his emotion, it would be impossible to miss even by someone who did not know him that well. He has very limited language but he still managed to talk all the way home. There was no hint of a sulking teenager or an epileptic who had recently had emergency medication after a bad cluster of seizures, this  was a happy young man who had all that he wanted in life.



And now the End is near…..

It is time to pack up today after two fabulous weeks on holiday  together. I have told Joshua that we are leaving and he has seen the suitcases come out again, but who knows if he really understands. He has been coming here, to this holiday home, all of his life, from being a small baby, and so it is entirely familiar to him and he knows which is his bedroom as soon as we arrive – although in the wee small hours, several times this holiday he has swapped his bed for mine! I have written about Joshua being a home-bird before and he feels so comfortable here that when we have been out on a trip and we approach the right road, he begins to jig in his seat and say ” back home!” so I know that this is a home from home for him.

But Joshua has the best outlook on life : he lives for the moment and while he is happy to be here, he will be super-excited late tonight when we get home again. So long as he is fed, entertained, not too hot and cuddled frequently, Joshua is contented wherever he is, so he is happy with the basics and anything more is a bonus. I predict that on Sunday morning, when he wakes up in his own bed, he will leap out and will peruse the house to check that everything is still in its place, where he left it and wil ask for ‘The Show’ DVD as we did not bring it with us and he has asked for ‘Robbie’ several times while here.

Joshua still has another two weeks or so off , so going home does not mean going back to his usual school routine quite yet. Whereas I will be back at work on Monday morning and that represents a big change for me: Having been with Joshua and his Dad 24/7 for the last fortnight, except for the two hours when my sister took charge of Joshua while we went for a wet bike ride together and apart from the sunrise walks that I enjoy with Ruby, while both boys are still fast asleep! I always find that I miss him during the day when we come home, that to see him awake for three hours when I get home from work, before he goes to bed does not seem sufficient, but that is our normal weekday routine. I should not be too sad as we have had a great time and we have another August bank holiday coming up, so that will be a short week and that tends to mark the end of the Summer holidays, when that autumn chill can arise in the evening.

Home is where the heart is

I have slept well in the silence of the countryside, snuggled in next to my boy. He was excited to get away and we are fortunate enough to have a home from home, which means that he easily slots into his ‘cottage routine’, surrounded by familiar things. I have explained before that Joshua is not someone who is thrown by a change of routine, he quickly makes himself at home in new surroundings and tends to make a tour of any new home he visits before he settles down. But he does not need to do that here, he just picks up where he left off.

‘Back home’ is one of Joshua’s expressions when he arrives and it applies wherever we are staying at the time, so hotel rooms have been called ‘home’ in the past. Now I have been reflecting on what home might mean to Joshua, to someone with a simplistic view of the world : Undeniably, home is somewhere that you can kick your shoes and splints off and lay out on the settee! Home is somewhere that ‘The Show’ will be played on request – we have a copy of the Live 8 concert here as well. For Joshua ,home is somewhere that you feel comfortable enough to wander between rooms freely and possibly, home is where your parents are.

So Joshua has had two weekends in respite now, December and January, and I wonder if he would regard it as ‘home’ yet? In respite,he can wander and relax at will and they play endless rock classics on YouTube for him. So although his parents are missing, there are lots of caring adults surrounding him ready to respond to his every need. I like to think that he considers it to be an alternative home. I know that Joshua has never pined for me, although he makes it clear that he loves me. He lives in the moment, and is accepting of changes of carer and I like to think that he has supreme confidence that,whereever he is and whoever is taking care of him, that he will soon be back home with his mum, so he will enjoy the change in the meantime.

They say that ‘Home is where the heart is’ and that may well be true , in which case as he is so big hearted, such a loving boy, home will always be where he is.