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!

School Days

I spent all of my day off in Joshua’s school yesterday: it was our parent coffee morning first, which I really enjoyed as everyone stayed all morning and we had some good conversations. We heard what a tough time a number of families had been having and that, for many, there was relief to leave February behind and begin March with new hope. We have no solutions there, but we do have sympathetic, empathetic ears and there was a sense of mutual support yesterday.

In the afternoon, I had a meeting in school with someone from school who is helping with transition, the manager of the new adult respite provision that we have chosen, our current adult social worker and our new social worker from Health, as apparently we will have two for a while! I did not even know that Health had social workers so that was confusing in the first place, but she has been allocated to us as Joshua will be funded by Health in the future. So she and the manager were there to learn more about Joshua, and the other three of us were happy to provide that background information. I was pleased when at the end of the meeting, the new social worker asked if she could meet him so that she knew who she was talking about, that was really encouraging.

As it was 3 pm, I had agreed to drive him home rather than his usual taxi, so I took her upstairs to 6th form. We found him sitting on the settee in his classroom; he spotted me and leapt up and ran across the classroom for a bear hug, eyeing the social worker next to me with some suspicion. He beamed and when I told him that I had come to take him home, he dashed to the doors and began to kick them to get out. I brought him back to gather his belongings and I distributed the leftover baking from the morning  to the staff and then we walked out together, with Joshua pushing his own wheelchair away.We had only sneaked out about 5 minutes early, but Joshua seemed delighted to be coming home and the Health Social Worker was able to see a happy, animated, loving young man and she even witnessed the door kicking that she had just been told about.

I approved that she had asked to see him as so often, professionals decide the fate of cases on paper only and they have never even met the child. I recall when we went to Tribunal in order to get a place at his current school, I printed off my favourite photograph of him and we had a laminated A4 image of Joshua sitting in front of us while we were talking, just as a reminder that this was an individual with a smile, freckles and twinkling blue eyes, not just  an anonymous case in a long day of hearings. I am not sure if it helped anyone else, but I felt as though he was being represented there.So it was a good day at school and it felt like another big step in Joshua’s future, a step away from school towards his adult life, but a step that I felt supported in by professionals who have his, and our, best interests at heart.

Breathing Space

The countdown to Joshua’s 18th birthday is well and truly on and one of the things that was still unresolved until yesterday, was whether or not his current Children’s respite would be able to offer him an extension, while we got organised with his Adult provision. I knew that OFSTED had to authorise Joshua’s presence there, as strictly speaking, he will be an adult staying alongside minors. The request had been made by our social worker earlier this month but I had heard nothing, in fact his key worker had emailed my last week to ask me when his last weekend would be as she wanted to ensure that she said goodbye to him. I explained that I was still waiting to hear but that everyone had suggested that a short extension would be permitted, so long as we had named his adult provision and that we had a date when we planned to begin that service.

I had had no response to my emailed enquiries yesterday, so I called the manager , from a queue on the motorway, to ask her what was going on. Although she had not yet requested the extension from OFSTED, she promised that she would do so. There was an email waiting for me when I got home from work, to tell me that Joshua would be granted three more weekend stays ,by which time he will need to be ready to move facilities. This is great news, such a relief, and it gives us some much needed breathing space. It will give us an important opportunity for a proper goodbye and thank you party, rather than just fizzling out, which he was in danger of doing if his final weekend had been in February. It will still be very emotional to move on, but now  we have a final deadline in mind and a new destination, that will be much easier to do. I hope that we can plan a party for his final weekend in May,  that we can attend too, so that we can say our thank yous and goodbyes. Having this respite provision has given my husband and I  so many opportunities and they have shown Joshua so much love, care and fun, so all three of us have a lot to be grateful to them for. They made the search for an Adult replacement very difficult, as they have set the bar very high, but it meant that they enabled me to know what I was looking for and more importantly, what I did not want for grown up Joshua. I am sure that we have made a good choice, but they have a very tough act to follow.