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?

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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.

Home from Home part 2

I left work early yesterday to take a look around a second possible adult respite provision, which is just 25 minutes drive from home, so is very convenient. Each time I do this, it reinforces the fact that Joshua will have to leave his current provision too soon and start again elsewhere, which is always a daunting prospect. So I am looking around, trying to picture a grown-up Joshua in this setting:

My first impression was not great as on entering, there was a reception desk and then a long corridor with offices off it, so it felt more like a hospital than a homely environment. Then it opened up into a large lounge area, which  felt like a hospital waiting room to me. There were two young men in there, lounging in armchairs, gazing at a television in the corner and I have to say, my heart sank. Then the lady showing me around, explained that they were awaiting their evening meal in 15 minutes, so I decided that perhaps I had caught them in a lull. The tour continued through double-doors into a large adjoining daycare facility and I was told about the activities that ‘service users’ enjoy there, although it was deserted when I was there.

Then she showed me one of 7 downstairs bedrooms, which were purpose built and very luxurious : the room was roomy, with tracking on the ceiling for a hoist and it had an ensuite bathroom, a television and a view out onto a large courtyard area outside. There were another 7 bedrooms upstairs and another quiet lounge. So then I had seen everything and she was able to answer all of my many questions, they are very comfortable with epilepsy and administering emergency medication. There was more flexibility over dates than at his current provision, in that you could save up your annual allocation of days and book a longer stay, potentially enabling us to go for a holiday longer than a weekend at some point in the future.

I felt uneasy about the ‘service users’ that I saw there however, as they were drifting around unsupervised. Joshua would need more direction than that and he would need close supervision for his own safety, he could easily have a seizure and fall down the stairs or burn himself in the kitchen. He would also need to be kept away from the reception and office areas for their protection, as he likes nothing better than to play on the telephone or computer keyboards and to scatter important papers and hide things – we have lost our TV remote control for over a month now! Perhaps the young people that I saw were more capable and independent than Joshua, but I cannot picture him in that large lounge, lolling in an armchair waiting patiently for his tea, he wreaks chaos at home in the run up to mealtimes, when I am distracted in the kitchen.

So my gut reaction is that it was not right for Joshua and I still have two more options to review, so I am keeping an open mind. I fear that we have all been spoilt by the excellent care that Joshua receives at his current provision and perhaps there is not as adult equivalent in our region, but I continue to seek it out.

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.

A perfect fit

I have packed up Joshua’s bag ready for his respite weekend away and he gave it a glance as he went to bed, so I am sure he knows what is about to happen later today. I anticipate that he will be extra-clingy this morning but once we arrive there, as we have to drop him off in the school holidays, he will not give us a backward glance as he will have a whole team of staff there to make a fuss of him. He just loves the attention that he gets there, there is always some member of staff to tease, to smile at, to flirt with and to flash his tummy at and I am sure that is what he loves about where he goes for his short breaks.

I now have a list of adult alternative provisions that we need to call up and look around, so that we can have something ready in place for next March when he turns 18. I plan to make appointments once Joshua is back at school and we will both take a look, before we introduce them to Joshua. I am hoping that I have an instant gut feel for the new place and staff, as I immediately felt at home where he goes now.

He has been going there for over three years now and I can still remember my first visit to suss it out : A smiley lady opened the door and she asked , before introducing herself or saying hello, ” can you walk like a penguin?” and I replied ” yes I think so!” and I thought, on the doorstep, Joshua would love it here. The rest of the tour was not really needed as I had already made up my mind but I went through the motions with the manager, getting more and more excited.

Once outside sitting in my car, I called my social worker up and said that we had found the perfect place and he tried to encourage me to visit another alternative. I replied that there was no need, as I had found the perfect place so I would just be wasting everyone’s time. I am delighted to say that that initial gut reaction was not wrong, it has been the perfect place for our son. They took care of him when he was ‘sleepy Josh’ but they are loving the cheeky, lively teenager that he has become. They humour him when he hides from them, giggling in the ‘garden room’,  they allow him to’talk’ on their telephone, even though he then loses it for them and they even take him out to his favourite Donalds for a treat. The staff were as worried as we were, when he stopped eating last winter, as they are ‘feeders’ like me, so they will be delighted to get the greedy, food-pinching Joshua back and I have warned them that they will not be able to fill him!

The new adult provision will have massive job to convince me that they can take care of him as well as the current place does, but at least now, I know what I am looking for as we have been spoilt with the very best provision. I have never been good at change, or transition as professionals like to call it! I can remember begging his nursery school head teacher to keep him there until he was 16, and she very earnestly said to me ” I’m sorry but I can’t… he will grow too big for the furniture!” I loved the fact that she used Joshua’s size as the only reason why he could not stay, not that she would not love to keep him otherwise! But if he had not moved up to mainstream primary and then his first special school, and then his current special school, we would never have found the perfect place for him for his education either , I know that  nothing stays the same, but it does not mean that I have to like it.

The Sleeping Lioness

Most mothers would tell you that they will do anything to protect their children, it is a natural instinct that arrives when they are born. You see this helpless little baby and you know that you will do whatever you can to make sure that it has the best care possible and nobody can get in the way of that protective instinct.

If that feeling applies to mothers of ‘normal’ children, just imagine how much stronger that feeling is when you are told that your baby is extra vulnerable, that he has brain damage and may not walk, talk, see or hear?  You realise that ,at 4 days old,  your son will need your protection for the rest of his, or your, life, whichever ends first. This mother/son relationship will not be like most others: Joshua will never leave home and live independently, he will never bring his new fiancee home to meet his parents or produce grandchildren and he will never be in a position to look after his elderly parents as they become more vulnerable too.

So, in that context, perhaps it is understandable just how hard we mothers fight for our children and it is , in my experience recently, a daily battle just so that Joshua can have his basic human rights. I should not have to fight to ensure that he is safe when transported to and from school, I should not have to complain to ensure that he gets the nappies that he needs to keep him comfortable overnight and I should not have to request that he  experiences a full school day…….

I have often heard that a mother can turn ferocious, like a lioness, in defence of her offspring and I certainly recognise that determind, protective fight in myself. Joshua does not have the verbal ability to speak up for himself and so, as his Mum, it is my duty to be his voice and to try to understand what Joshua would ask for , if only he could.

Joshua will turn 18 next March and so then it is all change again, as he will be considered as an adult : so his current respite provision, which we love so dearly, will end abruptly from his 18th birthday and so we are looking for adult alternatives. So far,we have not been successful in our local area, so it seems likely that he will have to continue to travel some distance to access that decent provision. Thankfully he can stay at his current 6th form until he is 19, but once respite is resolved, we then need to start to review his day care options. My Husband and I are visiting a solicitor this afternoon to discuss Power of Attorney over Joshua as it will no longer be sufficient that we are his parents, once Joshua is 18. We will not be able to make any decisions for him, even though his cognitive ability is that of an 18 month old, the law recognises that it will be 18 years since he was born. He has already been asked by DWP to sign forms that he cannot read and had his bank account frozen until he can prove that he has capacity to make a withdrawal. Why, just because he is 18, will we , as his parents, suddenly stop making decisions in his best interests? It makes no common sense at all.

So we will have to learn some whole new words and processes for our adult son, now that we have finally got him into the best school and the best respite, it will be all change again. It seems that there is little continuity from Children’s to Adult services, so we are having to tell professionals all about our son, as though he will change from the 17 year old that lives with us today to another man on his 18th birthday. Fortunately this lioness is ready to roar and pounce.

Transition warning

Joshua was brewing something all day, from waking up at 5am with me, when he was happy and lively and ate a couple of breakfasts! He started to stare towards the ceiling around 7.30 and so I wrote in the school diary that I expected a seizure at some point during the day. I was not too concerned as I was collecting him at 11 to take him to his neurology appointment, so he was only away from me for a couple of hours. He greeted me with a huge beam and a ‘mummy’ when I entered the classroom where it was snack  time. But he threw his toast away and was raring to go- he would have been less keen if he had known where we were off to.

Joshua was very excited and sociable in the busy waiting room, trying out the pens and paper for colouring in and interacting with other parents and children. He browsed through the books on the shelf, but throwing a few on the floor he was clearly unimpressed by the Book Club. He was weighed and measured, then was ushered into the consulting room.This particular neurologist had not seen Joshua for around a year so she noticed a big change in him : she thought he looked much more grown up, he was busier than in the past – grabbing her pen and dotting on the notes and prescription was his favoutite activity, right under her nose – and he was more independently mobile too –  getting out of his chair himself and walking around the room then trying to escape out of the door. In the end, I locked it so that I did not have to stand guard at the exit.

She wanted an update on his health generally, as well as his seizure activity. She used a well-used word that I keep hearing around school, ‘transition’; as she was already thinking of him being an adult and having to transfer from Children’s neurology and a Children’s epilepsy nurse to adult provision. She seems ahead of herself, as he has just had his 15th birthday, so there are three more years before he is adult, but I understand that, as things move so slowly, this is possibly a sensible approach. I explained that I hardly knew what I was doing next week let alone in three years’ time! The more professionals keep mentioning Transition, then eventally we will tackle the thorny issue of what to do when Joshua leaves 6th form and enters an adult world. They make it sound as though we have choices but I am fairly confident that for a young person of Joshua’s abilities and understanding, that his future options will be pretty limited in our area. He has had to travel over an hour for his latest respite provision into another Local Authority area and so I do not have high hopes for what will be available for him as a young adult, when his time comes.