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.

Now, the end is near…

This recent weekend was due to be Joshua’s last respite weekend at his children’s provision as it should end when he turns 18. However as we have not yet finalised where he will go as an adult, we have asked for a few months’ extension, to give us some breathing space to identify his new provision and to begin the transition process. This request has to be approved by OFSTED I understand, so it is not simply a matter of his provision having room for him. I want their help in briefing the new adult provision too, as they are best placed to explain what he is like while under their care as he is bound to be a different person that when he is at home.

I have been told that he was on top, affectionate and flirty form while we were away this weekend and so they have enjoyed having him there. He was flicking the staff’s hair and pony tails to get their attention and putting his face very close to theirs – he is comfortable to invade the staff’s personal space. I hope that he is able to build that same kind of relationship with the staff at the adult provision but they may be more stand-offish as they are dealing with adults rather than children. My concern is that, just because of his 18th birthday, it will not change Joshua’s personality or needs, his mental age will not increase, just his physical size.

That is why the staff and the culture of the place, is more important to me than immaculate walls and large en-suite bedrooms. I need to be able to picture Joshua somewhere and to feel that he will be treated as he needs , and  wants, to be cared for. I am looking for a home from home, where I feel that he can be happy. Joshua’s short breaks are not about us getting rid of him so that we can get away and relax without our caring responsibilities – although we really really enjoyed our weekend in Spain! I need to know that he will be having fun away from his parents, that he will be mixing with other young adults of his own age, doing activities that he enjoys and to know that he will be safe at all times. Joshua’s happiness and safety have always been priorities for me, and that comes down to the staff that work with him, both at school and in respite.

Once we have finally got respite organised, we will then quickly need to turn our attention to looking at Daycare options for him, to replace school from July 2020, which will be another wrench. Again school will support us with that transition but even so, I am not looking forward to that big change. It is all made more difficult by the fact that Joshua is oblivious to the change that is about to happen, all he knows is the here and now, that he loves the staff that he sees daily at school and monthly at respite, he trusts them to make the right choices with him. Joshua’s fast approaching adult status is irrelevant to him. The single good thing about all this unsettling change is that Joshua is much better at it than I am; although he is clearly happy where he is, he is unlikely to be too distressed by a change of setting. Perhaps he could teach his Mum how to handle change better?

A Meeting of Minds

Yesterday I attended a meeting at school with a number of professionals who are involved in his life and we planned what we need to do over the next year to take the best care of him. When I arrived at school I was asked to go to the Orthotics clinic, where Joshua was trying on his new callipers, instead of his current splints. He was delighted to see me, leapt up and squeezed me tight over and over again. He was taken out into the corridor so that we could see how well he could walk in them and as we did that, a crowd of professionals , on their way to his EHC meeting, approached. He looked up  and scanned the group of people. He was thrilled to see his workers from his respite provision and gave them a bear hug, swapping between them and me. If ever I was in any doubt that he loved the people that look after him one weekend a month – which I was not by the way! – there it was right in front of me. But all of this hugging and excitement was not getting on with the trial of callipers, so I asked them to continue into the meeting room so that we could see him walking up and down the corridor.

So the meeting got off to a pretty chaotic start. We invited Joshua to join us but he declined, as he ran away up the corridor, back towards his class. He had said hello but then he did not wish to sit in a meeting room, while we all discussed his future, so we respected his choice and did not insist. Given that we were talking for well over an hour, he may well have made the right choice.

At the end of the meeting, one lady from the Local Authority, who I had not met before, shook my hand and praised me for my ‘resilience’. She said that as she had an autistic son of her own, she knew about fighting,but that she had had nothing like the struggles that we had faced over the years. I was taken aback as she did not know me Joshua or our struggles but I tried to graciously take the compliment. I find it difficult to be told ‘well done’ about my parenting skills, as though I deserve a medal for being Joshua’s mother. Strangers are forever touching me on the arm, tilting their head to one side and saying ” well done” ; they mean it kindly I am sure, but I find it an insult to Joshua – as though he is something to be endured or overcome – and also to myself – as though this is a job that I need encouragement to fulfill, but perhaps I am being overly -sensitive? So I smiled sweetly and thanked her for her compliment, but moved on so that she did not dwell on it and so that I did not say anything that I might have regretted.

It was an emotional morning, and I lost count of the number of times that the dreaded ‘Transition’ word was used.It felt as though I was being prepared for the impending change that will soon be with us, whether I like it or not.