Respite Routine

Joshua began the school holidays with a long weekend in respite and over a month later, he is back there this weekend and his last stay seems a very long time ago.He had stayed for three nights for the first time, while we had gone to Ireland to scatter Mum’s ashes and the stay had gone very well. I am in the process of completing the diary so that they know what to expect with him this weekend, although I will of course also brief the staff when I drop him off at midday today.

When he had stayed at the end of July, there was already a hint that Joshua was not impressed with his wheelchair and it had been the only incident of that weekend. That aversion to being wheeled, in preference to walking everywhere, has evolved more over the summer, such that we have only taken it out with us once in the holidays and even then it was only used on a late night out when he was tired out.  While it is great for his physiotherapy, for his exercise and his independence, on occasions it would have been easier to have him in his wheelchair. But on this issue, Joshua has certainly called his own shots!

I will need to let them know that scampi and chips has become a new favourite meal, so that will give them another alternative option to try. Initially we were all concerned that he was not eating there, but because chicken strips and chips went down well at Donalds, they stuck with the same theme when in the home. But more recently, they have experimented and had success with pasta dishes too and he even ate a Sunday roast for them, indicating to me that he is getting more comfortable there and with the staff. He has generally had a great appetite over the summer, seeming impossible to fill some days.

Given that he only started going to this place in the Easter holidays, I have been delighted by how well he has settled in as he is showing that he is enjoying himself there and they are trying really hard to occupy him with activities that he enjoys. I like to call each night around 9 pm, when I expect him to be tucked up in bed – I had the same pattern with his previous respite provision. At that time, I am able to speak to the member of staff who has been working with him during the afternoon and hopefully they can report the day’s events, but I can be reassured that he has completed his day and is ready for sleep. That helps to put my mind at rest as just because I am not responsible for his care, does not mean that I  can forget about him and leave them to it. I like to hear the stories and answer any questions that they might have and as well as hearing about it over the phone, I like to read about it after the event, in his diary and it is a great record of the progress that he is making there.

Have a great weekend Joshua Fred, we have domestic chores to crack on with while you are away, so you will be in the best place!

Time to Review

Yesterday we had the first review meeting at Joshua’s new adult respite provision to discuss how his first few months have gone. Myself and my husband met with  the respite manager and Joshua’s key worker, and our social worker. We sat around the dining room table sharing how well he has settled in and planned the future, when he will progress to longer stays. He has started to eat there and is getting to know the staff and his bedtime routine. They have heard some of his language and they are planning activities that he might like to do in the future.

The only issue remaining has been showering as Joshua is not keen to get into the shower, though he is fine once he is in there. His downstairs bedroom has an en suite  wet room. Joshua prefers a bath, but the only bath is upstairs and is the en suite to a young lady’s room so it is not really accessible to him. This is not a new aversion, his children’s respite often struggled to shower him and if he objected enough, they would not insist. I would never offer him a shower at home, as I do not feel safe with a tussle to get him in there. They plan to try ‘desensitisation’, whereby the shower will be on whenever he goes into the wet room so that it becomes more familiar and hopefully less intimidating, and he will be encouraged just to put his hands under the spray of water at first, so we will see how that goes. He has two weekends booked in this month, so some progress will hopefully be made.

Joshua is now funded wholly by Health and so we have lost our current Adult Social Worker to be replaced by one who works for Health rather than Social Care. So this was our last meeting with her. She has certainly been an effective and caring social worker for our family, although Joshua never really acknowledged her when she visited him at school or at respite. But she spent a lot of time last summer getting to know us as a family and understanding both mine and my husband’s perspectives, as they are very different, and she took both of them into account when writing reports and seeking funding. She was proactive too, chasing me to look around respite alternatives and even yesterday, she was nagging me to review his daycare options in the near future too. This is the approach that we need, as otherwise time flies away from us just dealing with the day to day, she has always had her eye firmly fixed on the future, whereas I prefer the comfort and familiarity of the past and the present. So my husband shook her hand as we left, thanking her, and I gave her a hug. Nothing stays the same in life, time to move on but she has left us in a better state than she found us 18 months ago, and for that I am thankful.

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


Joshua knew that he was going off to respite yesterday morning, he watched me pack his familiar grey overnight bag. We came downstairs to fetch his medication and while I was counting tablets in the kitchen, he opened the back door, went out into the yard in his bare feet and opened my car door, He climbed into the passenger seat, whereupon he switched on the music system and played some U2 Greatest Hits to himself.  He seemed to be ready to go to me, apart from still being in his PJs, and he looked very pleased with himself when I peered in.

I drove him there for 10.30, after getting us both dressed,  and he was smiling as he went through the door. Instead of turning left into the lounge, he turned right and went straight into his allocated bedroom, as if to show me that he knew where he was and recalling his bedroom. He was happily playing a keyboard when I left him, he hardly gave me a backward glance. It was still sunny when I got home, so I immediately got on to cutting the grass as I knew the forecast was for it not to stay dry. In fact it started to drizzle as I was on the last three minutes of mowing, so I timed it just right.

I was then overcome with overwhelming tiredness and I dozed on and off in the snug for much of the wet afternoon, enjoying the luxury of not being woken by being sat upon or having a cold hand in my face. At 4 pm, my husband and I decided to move and we took the dogs for a walk in the park, had a late fish and chips lunch then went to the supermarket together. I was very content with how we had chosen to spend our  day free of Joshua, when my husband suggested that we go out for a drink! My initial reaction was to say no, but then the idea grew on me and we went out at 9.30 pm and I expected to be home and in my PJs an hour later. In fact we were out for two hours, until well after my normal bedtime. We met some friends and colleagues in the bar and they made us feel very welcome and so we stayed out longer than planned. We do not often go out for drinks, so it felt very grown up and thankfully nobody mentioned Mum, though I toasted her in my mind.

So we did not waste any of our Short Breaks hours and it sounded as though Joshua had fun too, when I phoned up at 8.30. He will have enjoyed mixing with new people and of course they took him to Donalds, for which they were thanked. He is there today until teatime too, so this will be his longest stay to date. This weekend was timely, to give me some space before the funeral, although I did not know it when I booked in this weekend. Mum shared in our relief that we had found and chosen a new respite provision and although she had not visited, she had read all about it and had seen photographs. She had told one of my Aunts all about it on one of her hospital visits. She was very interested in the choices that we made for Joshua and now we are going to have to visit and review his daycare options without her input. She would never tell me what to do, but she was a great listener and so often, you would resolve problems or  find solutions while talking things through with Mum. I will miss those calm, caring and considered telephone conversations that we had, when I always knew that she was on our side.


Respite time should be used for whatever we need at the time : in the past we have taken short breaks away, have been to a spa or have had a rare night out while Joshua is away in someone else’s care. This time, as my cold was at its peak, I needed to rest while Joshua was being looked after elsewhere. I came home after dropping Joshua off and I had a hot bath and then I went to bed and slept for 2 solid hours. I came downstairs in my pyjamas and dressing gown and stayed that way all evening. my husband wanted us to go out for a meal, to make the most of our ‘night off’, but I was already doing that, in my own way and I knew that I needed to stay warm and indoors, so we settled on an Indian takeaway, which I enjoyed very much, as I had hardly eaten all day.

Joshua had watched me packing his overnight bag on Friday night and so he probably expected to be going to his previous respite provision, but he definitely recognises the bag and the packing process. As it was his first overnight stay with the new staff, I packed him so familiar toys that he likes, such as his guitar and iPad, even though they have plenty of toys there. He had to be there for midday, and so we had time for our weekend Tesco shop first, which  went well. As I had half an hour to kill after that, as we had whizzed around the store in record time, I took him to a cafe for some orange juice and cake . He enjoyed both and he waved at all the staff and other customers too while enjoying his treat.

We drove to the respite provision on a new route and so he looked puzzled as to where I was taking him – Joshua watches where we are going knows familiar routes. But when I pulled into their driveway, he grinned and said “oooohh” as if to say ‘oh there we are, that’s OK then’. He got out of the car and happily went indoors, heading straight into the lounge where there was a new young lady curled up on the settee. He went to sit next to her and was curious as she did not respond as he expected. Even though he was only staying overnight, he arrived with two bags of stuff, which I put in his downstairs bedroom. I did not hang around, but said my goodbyes and left them to it.

I managed to wait until 8.45 before phoning to see how they had got on and it sounds as though he had enjoyed a good day,  and he was tucked up in bed already. The only altercation that they had had was when they had tried to give him a shower and he had objected, as I predicted that he would. But other than that, Joshua seems to have had a good time.I will collect him again at midday today and that will be the next milestone under his belt, 24 hours in his new respite provision. For my point of view, it could not have come at a better time, not so that I could enjoy wild all-night parties, but so that I could sleep when I needed to and to try to kick this cold into touch, so that I am fit for a busy week ahead.

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.

While the Cat is Away…

Joshua is in respite this weekend and that gave me more flexibility to make full use of my day off work, as he was collected by taxi from school at 2 pm and I received a text from his passenger assistant at 4.10 pm  that they had delivered a ‘very happy, lively’ Joshua there. Knowing that he was taken care of, meant that I was able to visit Mum in hospital again yesterday afternoon. As I had driven a lot this week already, I decided to let the train take the strain. So I caught a train at 12.40: I tried to doze on the way there but there were some very rowdy hens who were very excited and kept me awake. My connection was delayed and then I walked to hospital at the other end, so it was 3.30 before I reached my Mum who reported that she felt ‘floppy’ and as she lay in bed, she looked floppy too.

Afternoon visiting time was due to  end at 4 pm so I kept a low profile and was able to stay until after 7 pm. I bought her a hot chocolate ,which she enjoyed and while I was gone, she was able to doze too. I was there for doctors’ rounds which was unexpected that late in the day and as time wore on, she began to recover and became more lively. I was hoping that we might have heard some results form her biopsy while I was there, but nothing appeared so I finally left her to catch my train home. I updated my sister as I walked back to the station and as we were chatting on the platform, I saw on the screen that my train home had been cancelled. So I enquired as to my best way home and I had to travel to another station and catch another later train home, getting me back home at 11.30 pm.

Now this was not how I planned to spend one of our monthly respite nights, sitting in a station waiting for a train to take me home, but it gave me the opportunity to do something that would have been more difficult if Joshua had been at home and I am grateful for that. I called them at 9 pm, as is my routine, even though I was on the train but the first time, nobody answered. They called back and explained that they had been searching for the telephone, which my son had hidden! I heard that he was ‘happy, cheeky and flirtatious’ and then twice I was cut off as we went into tunnels, so I gave up, reassured that they were making the most of their last Friday night with him. In the past, he has been rather shy or sleepy on a Friday when he arrived there after school and he has often not eaten much tea, but that does not sound to have been the case last night. Reassured that all was well, I settled down for a snooze on the train – my destination was the end of the line, so I was not concerned about missing my station. But unfortunately, although I went into a deep sleep, the guard jiggled me awake asking to see my ticket and I never got back to sleep again after that.

We have more fun things planned for the rest of the respite weekend, but  their care was invaluable to me yesterday. After a long day, I knew that I would be able to sleep when I wanted to and that if I awoke during the night – as indeed I have done – it would be my doing and not Joshua’s. Respite gives us more flexibility, not just for the nice treats in life, but also for the other essentials that arise. It is invaluable to be able to relax and know that Joshua is in safe and caring hands, while he is not in my care.


Interpreter required

Joshua had a longer day at his new adult respite provision yesterday, he was there from 8.45 until I collected him at 4 pm, so that was a  longer introduction even than a school day. I was delighted that, when he worked out where we were driving to, that he was happy and rather than holding back in the car when we arrived, he happily walked down the path, to wait at the door with a big grin on his face. Even though he is virtually non-verbal, Joshua would have been able to indicate if he was wary to go back there, so that was a great start to the day and a positive sign of his attitude towards the place and the staff.

I thought that I had told the manager everything about Joshua, we have had several meetings and she has been to school and his current respite place to speak to staff too, but there are still many things that I did not explain. I am impressed that the staff there have endless questions about him and his ways when I go to pick him up. they range from practical tips like:

  • How do I fold away his wheelchair to fit it in the car boot? She watched me fold the chair away, the order in which to do it and how best to man-handle it into the car
  • How best do I lift his legs into the car, without hurting him? I explained that he can lift his own feet into the car but if you are in a hurry, then it is sometimes easier to do it yourself! I could not tell her how I do that but she watched me and commented how easily I lift both legs together, behind his knees.
  • I am sorry about his pad, but I was not sure how to change it? I have been changing Joshua’s ‘nappies’ since he was a baby and so I have developed a quick and efficient technique, now that he stands while being changed. I briefly gave a demonstration, in the car park ,of where best to stand in relation to Joshua, in order to have access to his front and back, but I am aware that it requires practice.
  • You told me to remove his boots, but do I also take his splints off? Yes I was not clear, I meant for them to give his feet a rest and to remove both his boots and his splints and put some slipper socks on his feet instead.
  • Joshua has been sweeping up here, how do we tell him no, when we do not want the brush in the lounge? He understands stop and no, so tell him and remove the brush from him, ideally replacing it with something just as fun that he is allowed on the lounge carpet, like a hoover.
  • Joshua tried to go to sleep on the beanbag, is that OK? Yes absolutely, I have never known his siestas interfere with his sleeping at night. If he needs to doze, then please go ahead and allow it, just do not let his nap go on for over two hours! There is more risk of seizures if Joshua is over-tired, so be guided by him and allow him to catnap in the car too. if he needs to

They have also asked about Joshua’s communication :

  •  What does it mean when he taps his chest? Joshua is saying love when he pats his heart and so he had been telling them that he loved them, while in their care. After just three visits, he falls in love quickly
  • What does he mean when he taps his knee? I am not sure here, it could mean a variety of things. He could be telling you that it is sore, maybe asking you to copy him and he is playing a game by pointing out your own leg or he might be saying here/now, it all depends upon the context.
  • Joshua kept saying ‘thank you’ when we got to McDonalds or back from the walk? That means he is really grateful and he has enjoyed what you have done with him or he is relieved to get back to the house. This is the only phrase that they have heard him utter, but it is a good and clear one and his politeness makes me proud as he uses it so appropriately.

I am happy to answer any of their questions, as it shows that they are investing time in understanding Joshua and in wanting to get things right for him : you only learn in this life by asking questions. I am just amazed by how much I take for granted and how much that has become so instinctive, that I no longer recognise it as being unique to Joshua. So this was his final session in the Easter holidays, the next time he is going there is after school one day next week for his tea and I will collect him before bedtime. I like the pace that we are working to and it feels comfortable for Joshua too, it does not feel that we are rushing him or going too slowly either. He is taking it so much in his stride, he sat on his allocated bed in his bedroom yesterday, before we left and I do not think that we are too far away from his first overnight stay already. We have moved at a pace that both he and I can tolerate and that the staff at his provision can accommodate too, so that is perfect.

Next Steps on the Journey of Life

Yesterday was an important step in Joshua’s respite story, as he had his first visit to his recently approved Adult Short Breaks provision. I took him there for 9 am and he was certainly curious about where we were driving too and he hesitated to get out of the car when we arrived. But with some encouragement, he climbed out of the car and we walked towards the door. I rang the bell and he was then inpatient to get inside and he pushed past me to try the door handle, which is what he was doing when the manager came to let him in. He smiled at the three staff members and marched through into the lounge. He kept hugging me for reassurance but he was not unhappy to be there and remained in the armchair waving, as I left, promising to return three hours later.

When I did return at midday, he was pleased to see me and began waving goodbye to the staff. They told me what he had been doing and had some very sensible questions about what some of his gestures might mean and we discussed offering him choices. Joshua began to kick my shins, just gently, as a hint that he was ready to go and to stop talking. He did not say anything to the team but he did utter a ‘thank you’ once back in the car. He will return tomorrow for a slightly longer stay, which we have been promised will involve a trip to Donald’s – they know how to win him over.

I was anxious about the new setting , it felt the same as when he started at nursery all those years ago : How will they know what he is asking for? Will he be afraid of these strangers?Will he be upset by the change? Will they take good care of my precious boy? And the same as most new settings, he took it all in his stride of course, he is much more adaptable than I am.

Joshua has had several respite places in his life : the first Special School that he moved to when he was 7, had a residence attached to the school. I was very resistant at first but after a few months, he began to stay on Monday evenings and he loved the hustle and bustle and it saved his long journey to school on Tuesday mornings. But we left that school in Spring 2011 and so we were left without any respite for a full year , while our social worker sought an alternative provision. In 2012 he began to stay at a local authority home one weekend in four and that worked well, until the company changed the property’s use to Adults residential.

We then had a 9 month gap again while we had to go out of area to find any suitable children’s respite facilities. Our social worker gave me two places to look around in a neighbouring county, both would be at least an hour away from home. I fell instantly in love with the first one that I looked around; the team leader opened the door and asked me if I could walk like a penguin? I laughed and said that I could and immediately felt that both I and Joshua would fit in well here, so I declined to view the other alternative, as I had found what I was looking for. Joshua had a  slow, phased introduction and it worked out brilliantly at the provision where he currently goes for monthly short breaks. Joshua adores the staff and the feeling seems to be mutual. They are planning a leaving party for him next month on his final weekend, after 3.5 years of monthly visits, and I will be bringing cake and tissues.

But nothing stays the same forever, things change and he has to move on, to allow the next youngster to experience the joy that he has felt while there. I was delighted with our first visit and although Joshua was shy, he took it all in his stride. It is a sign of his increasing maturity that he is slight more reticent of strangers than he once was and a great indication of his increased awareness of what is going on around him. Three years ago, Joshua was mostly asleep, they had to plan activities around his daytime sleeping patterns, so he really did not care where he was, so long as they had a comfortable settee. Today’s Joshua is much more lively and aware, but he has always found a way to charm his carers. Right back when he was 4 years old, the Headteacher of his nursery school had written about him ” Joshua has a way to win hearts”, she spotted his skill that early on and he has never lost it, in fact he has finely honed this skill as he has got older. It is the best tool that he has at his disposal and I am  confident it will help him throughout the rest of his life.

Decision Time

Our choice of adult respite for Joshua was submitted to a Panel yesterday, so we are now waiting to hear if it has been approved by the powers that be. We have had to justify our choice and explain why the alternative provisions will not be acceptable and I understand that, if it is rejected, we may have to appeal that decision. This is one of those decisions where we hope that we are trusted to know our son best and what he needs and that finances do not play a big role. You would have thought that a provision, with capacity, that is 10-15 minutes from home would be accepted, as a more viable alternative to his current provision which is over an hour’s drive away to a neighbouring local authority area, but we have had experience before where the common sense approach was not taken without an expensive, time-consuming fight.

Back in 2010, Joshua’s seizures were at their worst – during the Easter holidays, Joshua had been taken by Air Ambulance to A&E as his seizures were not responding to his rescue medication and we spent ten days in hospital trying to get things under control. After that, his special school were rightly terrified as they had no school nurse and so we began to look at alternative schools which did have the reassuring presence of a school nurse. We chose the best school to meet Joshua’s needs but were told that it was full, so we appealed. We had to take our case to a tribunal to justify our choice and the hearing was in January 2011. It was an expensive exercise as so many reports  were requested from all of the professionals who were involved with Joshua at the time and most of them attended the tribunal too.

The actual tribunal was over in five minutes, despite months of preparation. The panel had read all of the evidence in advance and so the  chairperson opened by saying that it was clear that Joshua needed to move to the nearer special school which had nursing support and she asked the Head if that was possible. The Head replied that it was only possible if he came with full funding for additional staff. The local authority agreed to provide that necessary funding and so the move was approved and we were out on the streets before we knew it, having been granted what we expected to have to fight for. It was so simple and fast, that it was hard to believe that it should have been resolved over the telephone months earlier, so that nobody ‘s time would have been wasted in this way. But within a month, Joshua moved to his current special school and we have never looked back.

I really hope that we will not have to face a similar battle for adult respite, but that common sense prevails and that we are informed of the Panel’s decision sooner rather than later. Once we have been given the go ahead, then we will start to plan Joshua’s transition and phased introduction. Already the manager of the new respite provision has fixed dates to see Joshua in his current respite and to speak to his key-worker, as well as observing him at school, so she is continuing as though she will be taking him on, even before the decision is rubber-stamped. So I have everything crossed that we hear soon that we have been granted our wish, so that we can begin to prepare Joshua to leave his beloved respite and carers and begin to make new relationships and have new experiences. It will not be easy to say goodbye, but we will be starting a new chapter in his life.