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…..!