School Days

This week social media has been full of photographs of smartly dressed children going off to their first day at nursery, primary school or ‘big school’. The parents are proud, afraid or in disbelief at where the time has flown to. I did not take a picture of happy Joshua , kicking the gate, eager to get into the taxi but I was one of the ‘ where has the time gone’ parents.Yesterday marked the start of the final year of Joshua’s school career; he has been going to school for 14 years, which is over three quarters of his life, and we still do not have a plan for what will take its place this time next year

I am envious of those just starting out on their school journey as it feels a safe, friendly, protected environment compared to the unknown world of adult daycare. In an ideal world, Joshua should be leaving 6th form to go off to university, taking a giant step in independence and the start of his career path. But instead, we are going to start to look for an adult equivalent of school, where he can mix with people of his same age, do interesting activities to amuse him and to have a regular routine that will get him out of the house and meeting other people. I have a list of local providers and my first task is to ascertain who can handle his epilepsy, as some may not have the training or confidence in administering his rescue medication. Then I will visit the remaining providers on the list, meet the staff, observe the facilities and current users and learn more about what activities they can offer. Some pupils from Joshua’s school are able enough  to complete further education or to undertake some supervised employment, but Joshua will not be seeking either of these opportunities. I will continue to look for what I have always said are my priorities for him : to be happy and safe, and learning something along the way would be a bonus.

So I do not take Joshua’s school days for granted, but I appreciate the care and fun that he has had at his current special school, where he has been for 8 years now. Apparently he gave his teaching assistant a big hug when he saw her yesterday morning, I knew he would be pleased to see her again. Joshua does not realise that this routine will end next July, he is oblivious to the impending change. Whereas I am very focused on it and will be aware that I will be attending the last ever school harvest next month – no doubt it will make me cry like my first one there did!- and the final Christmas performance, so I am going to try to attend everything that I can, to make the most of these precious school days. They say that your school days are the best of your life and I certainly loved my time at school, and I wonder if that will be true for Joshua? Who knows what the future brings? But on the whole, I would say that he has enjoyed his school days at this particular school and I am so pleased that these days, he is awake and alert enough to make his presence felt.

Penultimate Prom

Tonight is the 6th form prom at Joshua’s school and so it is a day when a real fuss is made of the 6th formers, particularly those who are leaving the school this year. The whole of the 6th form are invited, not just the leavers, to make it a bigger party. This year is a bit different, this year it will be held in the school itself, rather than a hotel like previous years. Sixth form have been preparing for this for weeks : dancing practice and making decorations for the hall. Yesterday Joshua came home with a list of things he is to bring today ready for his pamper : toiletries, slippers and Pjs so that he can chill while everyone is getting ready, getting their hair done. My main worry with that plan for Joshua as he has been this week, is that once he is in his slippers and pyjamas, they will never get him dressed into his suit again, he will just want to curl up and snooze somewhere!

The sixth-formers stay on after the school day, after parading around the school this afternoon to be admired by the rest of the school in their finery. Then parents are invited to attend from 5 pm onwards to join in the fun. The whole event will draw to a close at 8 pm when we will take our tired 6th formers home again. I really hope that Joshua lasts until the end of the party and that he finds the excitement of the other students infectious and he joins in. Last year he got over heated and so he was not on the best form when we arrived, but he perked up after some Magic Calpol and some fresh air, and soon he was on the dance floor and surprisingly, we were amongst the last to leave last year.

I know that some of the more able, aware pupils are very excited about their Prom night and they have taken an active role in suit shopping and are counting down the days to their big party. It will be a highlight of the year for many and that is really special. But Joshua is oblivious to the build up and to him, it will probably be like a summer term school disco. I am looking forward to seeing those 19 year olds who will be leaving school in a week’s time as i know some of them pretty well as they were in the same seniors class as Joshua. I wish them all well for the future, whatever it brings.

However, their leaving school, makes Joshua in the final class of his school career from September onwards, which is a sobering thought. This will be Joshua this time next year, saying goodbye to all that he knows and loves and stepping out into the mysterious world of daycare. It is a sharp reminder that we must begin to look around the alternative daycare provisions that are available in the local area and start to plan his future, as it will be here sooner than I realise. So tonight could be an emotional event.

Mind Games

Even after a productive day, my mind played tricks with me which is why I have been up and awake since midnight. I awoke with a start and immediately checked the time then I cried out. In my dream if I did not wake up before a certain time, my sister would die and I had missed my deadline. How am I supposed to sleep after such a nightmare? My sub-conscious is clearly trying to work everything out while I am asleep.

I was surprised as my sister and I had been together all afternoon, at Mum’s house and had achieved a lot together and had managed to share some laughs too. We began by calling round all the utility suppliers to inform them of Mum’s death and to take over her direct debits, I took on gas,electricity and telephone , while my sister tackled water and direct mail. These are time consuming calls to make, although most large companies have Bereavement Teams, which I did not know about. After those calls , we thought we had earned some lunch out as we seem to be comfort eating our way through these post-funeral days. Then we braced ourselves to go to the funeral director to collect Mum’s ashes and then carried them home. Mum left her instructions of the places where she wanted to be scattered, she did not want a head stone, so we will of course do as she wanted and organise some trips to do the scattering in due course.

That was enough by the time we got back to Mum’s house, so we sat quietly in the lounge, with the cup of tea that we had earned.We have both found some peace being at Mum’s house, surrounded by her things, just how she left them. We are in no real rush to pack up Mum’s belongings and house, there is no hurry. In the meantime it is a calm, comforting and happy place where we can share memories of our childhood and of Mum, as she lived there for the last 41 years. This is a surreal period of adjustment and we are still in very early days, so we will just continue to take each day as it comes for now and keep reminding ourselves to behave and react like Mum would have done.

Plus ca Change

Now is the time, after Mum’s funeral last week, that the harsh reality begins to sink in, that we will not see her again. As we return to work, it seems odd that life continues as normal for everyone else, while our  world has shifted on its axis. I have been feeling rather numb, so I have been operating on auto-pilot, which is probably the mind’s way of coping with the shock and loss. My mind has also been playing tricks on me: as we live over two hours away from Mum’s home, it has been fooling me into believing that everything is normal and that she is still at the end of a phone, whenever I have anything that I want to report or discuss. I know that it is still early days in our grief journey, but I keep getting caught out by the waves of real sorrow that overtake me.

Today my sister and I are heading back to Mum’s house and we will collect her ashes from the funeral director, so today is another big step in letting her go. Once again, I know how fortunate I am that I will have my big sister by my side. Although we were only together last Friday and we are speaking at least once a day at the moment, it still seems like forever since I saw her last and I am really looking forward to seeing her later. Only my sister truly understands my loss as Mum’s daughter and we do not have to pretend to be brave for each other.

Before I drive to Mum’s house, I am taking Joshua into school as I am meeting with his teacher this morning for 6th form Open Morning. It will be useful to have the opportunity to find out more about their plans for Joshua during his final year of school. I am adjusting to the reality that he will be leaving school this time next year, when he is 19, and I am sure, with the right support, we can find him the right place for the next phase of his life.  I am hoping that we can find somewhere that replaces the hole that school will leave in his life, so Monday to Friday 9-4 pm would be ideal. This is just one more change that we will have to face together and with the right groundwork, I am certain that we can adjust and start to look forwards, rather than backwards, which is always more comforting as it is familiar.

It does not matter that I am not very good at change, because change is thrust upon me, whether I like it or not. There is no point in me fighting it, as that only makes things more difficult, I need to simply embrace it, pick up the pieces and move on.

Reunited again

When I collected Joshua last night, at teatime, from respite, he leapt off the settee as soon as he saw me and shouted ” I like you!” and gave me a giant bear hug. He left me in no doubt at all that he was pleased to see me after more than 30 hours apart. The staff reported that he had slept well overnight, just getting up once, and that he had eaten there too, so all would seem to be progressing well. Our next step, more for me rather than for him I suspect, will be two nights away, but I am glad to be taking it step by step as he only had his first stays there in April, so we are not going too slowly.

Joshua was clearly tired, he almost nodded off in the car home and when he arrived back, he went straight through to his Den and snuggled up on the settee with The Show switched on. I made him a welcome tea which he ate greedily and then he had his bath, during which he repeated ” tired” and ” jamas”  so an early night was on the cards. It is tiring learning new routines and being with new people, I imagine for Joshua adapting to new respite, must be like starting a  new job, and we know how exhausting that is, as you do not totally relax, even though you can maintain a calm appearance for the outside world.

Joshua will only be having a three day week at school, as we will drive to Granny’s house from school on Wednesday, to prepare for the funeral the next day. It may only be when he reaches her house, and her smiling face is not there to greet him, that Joshua truly understands some of what has been going on. Even my mind can fool me from this distance that she is really still around, to be reached on the end of the telephone, so I am really not sure what Joshua can process.Because he deals with the here and now, what is in front of him, he is likely to accept that Granny is missing, even though she has lived in the same house all of his lifetime.

Joshua’s 18th year is full of more change than even I had expected, but I am so thankful that he had his loving Granny in his life for all of his childhood, nobody can take that away from him.Granny Love

Seaside Saturday

Joshua had a full day, from 10 am until 7 pm, at his adult respite provision yesterday and once again it went very well. Joshua was happy when we pulled into their drive and he ran towards the door and headed straight into the lounge. There was a young lady there who he has shared children’s respite with him before, and he sat on the settee next to her and there seemed to be some recognition between them. He waved me off, as they explained the plan for his day was to go out to a nearby seaside resort and that the trip would include a visit to Donald’s! The sun was shining and the sky was blue, so it could not be better weather for a trip to the seaside, so I left them with a big smile on my face.

My husband and I enjoyed some brunch when I got back and then we cut the grass, before heading out to our nearest market town for lunch and shopping. There was just time for  a siesta before I set off to collect Joshua again. He was very relaxed when I arrived and gave me a giant bear hug, while I heard all about his day and about how much more they had learnt about his tastes and preferences. The staff agreed with me about how well Joshua has settled in already and at how he has adjusted to the new surroundings and staff, taking everything in his stride.

Next weekend is the big jump to an overnight stay – he will arrive at Saturday lunchtime and will be picked up again on Sunday lunchtime. So ,having got to know the staff and building, he will use his allocated bedroom for the first time, which feels like the last hurdle to jump as he ate a meal with them yesterday, which he had been resisting up until then. Assuming that goes well, in June he will stay for two nights. It is good to have been able to control the pace of his transition so that there has not been big gaps between his visits, so that we can keep up the momentum. We have been able to shape the speed at which he has become absorbed into this new provision and all of my requests have been accommodated so far. When he first started at his previous children’s respite provision,  we were restricted to monthly visits and so it was several months before we progressed to an overnight stay, whereas, this has only taken since the Easter holidays to reach this point. Assuming that single night goes smoothly, next month he will go from school on Friday night until I collect him on Sunday evening and then finally after that , we will achieve his ‘normal’ three night weekend, going from and to school.

I was upset last weekend when Joshua had to say his goodbyes at his familiar children’s respite, but how much sadder would I have felt if he had no adult provision to  slide into, or if he was not settling in as well as he already was. We are in a good place as far as short breaks are concerned and I love the  fact that it is just a 15 minute drive away, down country lanes, too, which makes these short visits feasible.

Once again Joshua, you have demonstrated how adaptable  and resilient you are and by taking it all in your stride, you make it so much easier for me to adjust too. Joshua’s laid back, sociable personality has stood him in good stead once again and it also helps me to realise that he will relish the move to daycare, from school in a year’s time, too as it will give him some new people to meet, win over and flirt with.

Cry Baby

I had been so proud of myself on Sunday, for keeping a lid on my emotions at Joshua’s leaving party, but when I got home I wept uncontrollably, especially when I read all the staff messages in his card and later when I spoke to his keyworker, when she had tucked him into bed for the last time. I was still weepy in the morning, thinking about going to collect Joshua and I cried several times in the car on the drive over.

I arrived at 10 am, as requested, to find a smartly dressed, showered Joshua waiting on the settee with two members of staff. I handed over the bouquet that I had bought for the team and cried, then hugged those staff. Joshua hugged me too and looked curious as to why was mum so upset. We loaded him and his luggage and wheelchair into the car and there were more tears and hugs. My eyes still prickle when I think of one lady thanking me for sharing him with them and one man telling me that he was a credit to myself and my husband. They insisted that we return for a cup of coffee in the future, so that yesterday was not a final goodbye. It is never easy to go back, but I want to ensure that we do keep in touch as they will always have a special place in our hearts.

So it was a highly emotional morning , so much so that I needed a nap when I got home with Joshua , when he went upstairs to watch The Show in his bedroom. I felt much better and more rational when I woke up, although I had puffy eyes for the rest of the day.Joshua was delighted to be back with us and we enjoyed a fun day together; he is always my shadow after a spell in respite, as though he needs to keep me near for a while, so it was good to have the extra bank holiday Monday off together. It is back to school today but for just a four day week and then in three weeks time already, it will be half term already….

We have been brought face to face with Transition again this week, as I, not Joshua, struggle to adapt to change. Of course I reflect on how much more upsetting leaving school will be next July. If I sobbed so hard to leave respite after almost four years, when he went there every fourth weekend, how much tougher will it be to leave school where he will have been for 9 years, five days a week? I have never attended the Leavers assembly at school, but I can imagine that I would be an emotional wreck after that. Still we have over another year to worry about that, so for now, we are going to make the most of a four day school week…..!

Times they are a Changing

This is going to be a busy and emotional weekend: It all starts today, with my Friday off and I will be attending a Speed Awareness course first thing, as I was caught driving at 35  mph in a 30 zone on the day of Joshua’s family birthday party. I will go from there, back to hospital, to visit Mum and hope to find her better than she was on Wednesday this week. I had to rely on my sister for news yesterday, as  text updates were not forthcoming earlier in the day.

This will be Joshua’s last ever weekend at his children’s respite, so he will go there, as usual, straight from school this afternoon. He is having a leaving party there on Sunday, probably more with staff than children, and my husband and I are invited along. As I know it will be an emotional moment, I have already sent them a long email of thanks, explaining what their care has meant to our family over the last almost four years. I knew that I will not be able to make a speech, so it was a better idea to send it over a couple of weeks ago.  It is not just the fact that we will not see everyone again, but it makes me sad that Joshua will not understand the significance of this weekend, as he will expect to keep going back there forever. Now that my gratitude is clear and explicit, we should be able to focus on having fun and reminiscing at the party on Sunday. I have promised to bake for some of the sweeter party food too, which is another way of thanking the staff.

As it is bank holiday Monday, Joshua’s taxi will not take him to school after his respite weekend and so I will be going back on Monday to collect him by 10 am. We did consider bringing him home with us after the party, but that would be depriving him, and us,  of his last ever night’s sleep there. I just hope that  our unexpected presence there, does not upset him too much, so much so that it ruins his last night, by unsettling him, as he expects to go home with us. I hope that I know my laid back son well enough to judge that he will settle back down once we have left.

We continued weaning Joshua off his children’s respite provision, by him spending four hours at his adult replacement last night from school. The taxi driver reported that he looked confused when he arrived there, rather than home, but that he went in with staff happily enough. I collected him at 8 pm, finding him happily sitting on the settee, surrounded by 4 members of staff, loving all that attention. Once again I was asked a few questions about his after school routine and the only problem, had been his continued reluctance to eat with them. He had eaten his medication in a chocolate mousse, but had rejected any other offers of food. He had given the staff a cheery wave as we left and uttered his only words for them :” Thank you”, which was very polite and appropriate. So we will continue on with Transition, he will go there for a full Saturday next and then he will try sleeping there overnight for the first time, going from 1 pm on a Saturday to 1 pm on Sunday . We are making the introductions pretty quickly, but so far, they seem to be going really well, so I am mightily relieved.

So I have my tissues at the ready for this weekend as change is always hard. At the back of my mind is a little voice that keeps reminding me that he will be leaving school next July. If this is an emotional separation after four years of monthly visits, how much more difficult will that be after 9 years of daily attendance at school. But I am well practiced at ignoring those nagging voices in my head, so I will try to continue to blank it out.

Yorkshire Grandma to the Rescue Again!

Yorkshire Grandma has known Joshua all of his life and he adores her, which means that when she is in charge after school, I know that he is in safe hands. She was meeting Joshua from school yesterday, while I am away overnight combining work with two more hospital visits to Mum. Sadly nothing is straightforward at the moment, and he came home with news that he had suffered a tummy upset at school. He proceeded to be loose several more times at home, so she and then his Dad later, were left to clean him up and settle him again. As my husband is also away on business today, Yorkshire Grandma was already coming to our house at 5 am to get Joshua ready for school, to allow him to get away on time. It became clear last night that Joshua would not be going to school today , but thankfully, she is able to hold the fort today until I get back home. He had been due to make another visit to his adult respite provision after school, so I have had to cancel that too and I will not now be able to host the parent coffee morning tomorrow either, as Joshua will need to stay at home to recover and stay in isolation. None of my plans will come to fruition and I am so grateful for Yorkshire Grandma’s flexibility too.

We pay Yorkshire Grandma an hourly rate by Direct Payments, a source of funding that comes every month from social care. I have to submit a timesheet for her hours every month and a Payroll company advise me how much to pay her and HMRC and that system has worked well for many years now. Last month, as she covered two overnight stays for me when Mum first went into hospital and she had him for full days in the Easter holidays, her hours amounted to over £1000. So I went to my Direct Payments bank account to transfer the cash into her account, as I do every month, only to find out that there was not enough in there to cover it. Upon investigation I found that the payment was last made by the council in February, so I immediately know that this failing was another casualty of his turning 18!

So I emailed my social worker and later rang her as I had received no response and while waiting, I spoke to the Payments department of the council to ask why no recent payments had been made. They confirmed what I feared, Children’s Services had cancelled the payments on 5 March when he became an adult. We had been told that his Direct Payments funding would continue unchanged as an Adult and that Health would be funding it as an adult, rather than Social Care. But that the paperwork had not been completed , and so the payments had simply stopped. I always kept a contingency amount for emergencies, so that had covered the hours in March, but now his account was empty and Yorkshire Grandma was owed £1000 for hours that she had worked in good faith.

Our social worker called me back and promised to chase the Health Social Worker for me, but warned that the money would not be instantly available, but that there would be a delay before it would be transferred. So this is yet another area of Transition where something that has worked perfectly for around 8 years, has crumbled because of Joshua’s 18th birthday. He has been  promised that his funding level will be maintained by Adult Services but that the paperwork has not been filed in time for a seamless transfer, even though everyone knew in advance when he would become an adult. Just because in the eyes of the law, Joshua has become an adult, does not mean that his needs, or the needs of our family, have changed. I am relying upon Yorkshire Grandma’s goodwill and flexibility today when she will cover another 12 hour day , at least, and yet we are not backed up by efficient systems or responsible professionals who have not done whatever they needed to do, in order to make this transition run smoothly. It is not fair that I simply stumble across this failing, nobody has been in touch to advise me that there was a problem so I foolishly ,and trustingly, assumed that everything was in hand. But you know what they say about people who assume…..

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!