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.

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?

Homecoming Part 2

I left work early yesterday, so that I could be the one who met Joshua from school, which is unusual for a Monday. As the car reversed into the drive, his cheeky, smiling face looked out of the back window at me and he was eager to get out of the car. I was greeted with a big bear hug and a beaming smile, which was the best feeling in the world. We had been missed and he was delighted to be back where he belonged, back home. Once indoors, Joshua checked out his Den and bedroom, just to ensure nothing had moved or changed while he was away. All of the time I was treated to more hugs .

He messed about at teatime, just seeing how far he could push things now he was home : he wanted to eat his meal on his bed upstairs in his bedroom, rather than downstairs in his normal place. He left a third of his first course, but was he still offered a pudding? Of course, thrilled to have him home, I relented on both challenges.

While the respite provision attempts as far as possible to replicate a home environment, there really is ‘no place like home’ and Joshua recognises the difference. At home he had my undivided attention and he made the most of that, so much so that my husband commented on feeling neglected, as Joshua’s needs and wants came first. He was indulged by having ‘Lion King’ on in his bedroom, while Robbie Williams was singing in the Den and Madagascar was playing to itself on the ipad on the floor of the snug at one point, and Joshua browsed between all three favourites, not sure where to turn next, being spoilt for choice.

I loved our break away in Belgium and I am certain that Joshua had fun in respite, but this is where we both belong : “back home!”

Day Tripper

As we are starting to use a new Direct Payments worker with Joshua, she took Joshua out for another three hours yesterday. You may recall that I was surprised the first time that she took him out in the summer holidays, that he was rather shy and anxious about the experience? Well there was none of that this time, he beamed when he saw her and practically ran to get into her car, while we loaded the wheelchair. He kept shouting ” I like you!” and then she said the magic word relating to her plan for the outing, that they might go to McDonalds!! He heard that and began to jump up and down in his seat shouting “Donalds!” so she was committed to that plan, there would be no talking him out of it.

So how did I use my three hours of ‘respite’ on a saturday morning ? well I went wild… I had a sleep for an hour, I went back to bed! I enjoyed a long, hot bubble bath with no interruptions. Then I went to the shops – buying some bits and pieces for my husband’s birthday – then I tooked the dogs for a sunny walk in the park. So I packed a lot into my three hours ‘off’.

Joshua returned back, full of beans, and I enjoyed hearing all of the tales of what he had got up to and how he had behaved in ‘Donalds’ – he had enjoyed his chicken strips and had decided when he had had enough and so they all took his lead, and left when he was ready. I explained that he does not get to dictate that so much when he goes with his parents, but it was only trip 2 so she will get more confident at telling him ‘no’ I am sure, instead her son had to leave while still eating his burger, just because Joshua was ready!

I am delighted by how well they are both taking to each other, they seem to be having fun so we just need to work out some time next month to play again, as I am sure it will be easier if they have regular contact and get to know each other better. But I love how much not only the DP worker enjoys his company, but also her family seem to have taken Joshua to their hearts already : her son was keen to take him to the skate park with him and her daughter was disappointed that she was busy yesterday and would not see him.

As 4 year old Joshua left nursery school, the headteacher wrote in his ‘report’ that Joshua had a talent for getting into people’s hearts. She spotted something in that child that I did not recognise at the time, as his transition to mainstream primary school was mostly about what he could not do. But now over 13 years later, I see that she was indeed right, that his smile, affectionate nature and the twinkle in his eye does indeed win people over . That is a great skill for him to have and it should help him thrive in the future hopefully, especially when we are no longer around to take care of him.

Tough Act to Follow

Yesterday we looked around our first ‘adult’ short breaks provision – Respite is now called Short Breaks – the first of three alternatives in our local  authority area that our 18+ social worker has identified for us. So that is the first thing, we have a choice of three once Joshua is 18, but as a child, he has to travel 50 miles for his Short Breaks! My husband and I both went to look around, with an open mind and not really knowing what to expect. This one is just 15 minutes from home so it wins on the convenience stakes and is in a beautiful, rural location, overlooking fields and stables so Joshua would feel at home there.

The manager greeted us with a smile and she was very pleasant and she showed us around, answering all of our questions. There was just one resident there at the this time and in fact I knew her, she had she is two years older than Joshua but they had shared two previous provisions. She looked happy and seemed to recognise us – she had certainly lead my husband by the hand around a garden in the past! – and her two carers seemed to be attentive and friendly. It has four bedrooms, all with double beds in, which was a key difference from his current location and took me by surprise, until the manager explained that they are all adult residents and asked how many adults I knew who slept in a single bed, which was a fair point. It had a safe garden with a bright mural and a new trampoline, so it was starting to represent a sensory garden.

I liked it and I liked the manager, but I did not love it. I fell instantly in love with  his current placement – the staff , the building and the city centre location – and while possible, it did not compare with that. Perhaps we have been spoilt with the best?  This is a new home, it has only been open for around a year and so it still lacked heart for me. But possibly it only needs the buzz of more staff and residents for it  to feel more homely.

We will view the other two  local places and then let our social worker know our preference. And then they will need to do whatever needs to happen with the finances, and of course a gradual Transition process will need to be planned in. The new staff, wherever they are based, will need to meet Joshua and to see him both at school and in his current respite provision, so that they get the professionals’ opinion as well as seeing the young man for themselves.  There are certainly exciting, but scary, times up ahead as Joshua turns 18 and I am trying to embrace the change, as it will happen, whether I like it or not.