Shop Rage

I wrote recently about how demanding Joshua was when I had visitors who took my attention off him for a short while, but yesterday during our weekly visit to Tesco, Joshua pushed his behaviour further. He had been excited to get his boots on and go out and had shouted ‘thank you’ when we got to the supermarket, as he usually enjoys these shopping trips. We had pushed a trolley in from the car park but almost as soon as we were through the entrance, he began to misbehave.  As we negotiated the trolley down the busy fruit and vegetable aisle, he was pulling it against the direction we were going and I was anxious that he was going to crash into someone. We were only on that first aisle when he kicked me with his big boots, right on my ankle bone and made me wince with pain. By the second aisle he was smacking me hard on the chest, so that I had a red mark  and it stung. I stopped the trolley and told him firmly to stop hurting me, but he smiled his cheeky smile as though it was all a fun game, and gave me a big hug as though to apologise. So we continued on with our shopping list, which was longer than usual, so that might have been the problem.

He continued to misbehave and to smack me as we moved through the store, so much so that I was very grateful to get to the checkout and I vowed not to bring him for a while as it had proved to be both painful and very hard work He sat nicely on the seats at the ends of the till while I unpacked the trolley and re-packed my bags. For a moment I thought how much I was looking forward to next respite weekend without him and then I immediately felt bad for thinking that way, as I know I will miss him. Just before I was finished bag packing and before I had paid, he jumped up from the seats, started to come towards me, then decided it would be more fun to run away, towards the exit. So I put down my shopping and dashed after him, bringing him back to our till, where the kind lady behind me was loading my remaining shopping into my trolley. She explained that she was the daughter in law of our neighbour and she could see that I had my hands full that morning. I was quick to tell her that he was not always this bad, that he usually enjoyed our weekend shopping trips, and she kindly replied that ‘we all have bad days’, so it did not feel as though she was judging either of us.

A meek, helpful Joshua helped me to push the full trolley outside to the car and he obliged beautifully getting into his seat and waiting while I loaded the bags into the boot.We both had a quiet sit and contemplation, before I drove us home again. Once home, I took Joshua’s boots off and he went into his den for some quiet time, while I unpacked the shopping. He resorted to his relaxation which was to enjoy his music DVD and I resorted to mine, so I went into the garden to pick some apples and blackberries, and I set about making a crumble to reset my equilibrium.


Our respite weekend did not go quite to plan as I had a call in the morning : Joshua had fallen out of bed at 6 am and had bumped his head on the wardrobe next to his bed. I asked if he had experienced a seizure as he can fall out of bed at home due to spasms, but they thought not as he was not fitting when they reached him after hearing the noise from the fall. So I suspect that he either stumbled in the dark or got his feet tangled up in his duvet. I asked how badly he was hurt and was told that he had sustained a bump to the head and as he had a head injury, they followed procedure : They had already called an NHS helpline who had asked if he had ever had brain surgery, and as he has, they advised taking him to A&E to be checked out. I asked how he seemed in himself and was told that he was behaving normally and seemed to have no ill effects.

I know from previous falls and bangs to the head, that hospitals are looking for evidence of concussion, but that given Joshua is non-verbal , he does not respond to their typical tests and so we end up sitting around for hours, until they ask us if he is behaving normally, and then they send us home. So if it is not necessary, I would rather avoid a Sunday in A&E and I explained this to respite deputy who called me. She said she would consult her Head Office and call me back, which she did. Being understandably cautious, HQ had advised her to take him to hospital. As I did not wish this to happen, they could not keep him, having ignored medical advice and so I went to pick him up.

Luckily he is only 9 miles away and we had not, as originally planned, gone further away for the weekend. So I was there in around 15 minutes to be greeted by a very smiley, happy son and two very apologetic staff. I saw the bedroom furniture that he had banged his head on and we discussed plans to prevent a re-occurrence  : they are going to pad the sharp edges. Bed rails were suggested but I asked that those were not used, as from our experience in hospital, Joshua attempts to climb over them and therefore is at greater risk and height. Joshua had a small bump on his forehead, a scratch on his nose and one at the side of his face and so did not look as though he had hurt himself badly at all, much to my relief.

He skipped out and leapt into the car, seemingly pleased to see me and happy to come home and I was relieved to see him too. So we got a day less respite than we had planned, but that did not really matter as we had no big Sunday plans that we were breaking. We had already enjoyed a meal out together on Saturday night and we had completed our planned chores, so it was fine for Joshua to return home early. It is good to know that Joshua’s respite provision have procedures in place and that they take head injuries seriously and I did not mean to undermine them by not following their advice. I was happy to take responsibility for monitoring Joshua’s health at home and if he should have shown any ill-effects from his fall, then of course I would have taken him to A&E later in the day. I was just pleased that we were around to be able to respond and once again, I have to wonder if things happen for a reason.

Absence Makes the Heart Grow Fonder

The purpose of respite, as far as I am concerned, is to give the parents a break from their child for a short time but also for the young person to gain some independence from their parents. It is not natural – I really hate the word ‘normal’! -for an 18.5 year old to spend as much of his time with his parents as Joshua does with us. In an ideal world, he would be out with his friends, or have a part time job, not relying upon us to entertain him and to fill his school holidays. But we do not live in an ideal world, so we have to create a situation where we have some freedom from each other.

I delivered Joshua to his respite place at lunchtime yesterday, and he was happy to go there and , once inside, he was confident in his surroundings.  I helped him through the garden gate and told him to knock on the door, while I went back to the car for his wheelchair, but he stood in the garden looking from me to the door, uncertain about what to do. Luckily he was spotted from inside and his carer came out to greet him, then he happily walked indoors. He sat on the leather settee and began waving at me, indicating that I was dismissed, no longer required. I stayed a while longer, to report on the events and changes from over the summer, then left them to it, walking away with a spring in my step, knowing that I had plans between then and Monday morning when I will collect him.

It was not always so easy to walk away :I used to worry a lot about him when he was out of my sight and I found not knowing about what he was doing 24 hours a day, difficult to adjust to. I have heard other parents say that they felt guilty about accepting respite, but I have never felt that way. I know that the short break is as good and necessary for Joshua, as it is for us. We all need some space from each other to top up our batteries and to appreciate what we have at home better, as absence does make the heart grow fonder. It is all about finding the staff that you trust to do a great job of caring for your son , in an environment where you know that he will be safe, comfortable and happy. We have been very fortunate with the provision that we have accessed and the fact that Joshua has settled in so well at his latest placement.

I know need to find somewhere that I am equally happy with for daycare, which we will need from next summer when Joshua leaves school. I have set myself a deadline of this Autumn term to visit all of the local options ,so that I can make a selection by Christmas, which would give Joshua’s social worker six months then to complete the necessary paperwork and make it happen. That sounds achievable now, but we all know how quickly the weeks speed by, so I need to crack on if I am adhere to my own timetable.

Party Animals

It was Joshua’s Farewell party at his children’s respite provision yesterday afternoon, and it could not have gone better. I arrived  with homemade cake to share  and he was sitting on the settee when I arrived but leapt up, grinning, when he saw me in the doorway and I had countless hugs – he alternated between me and his keyworker, he was so excited.

We moved into the dining room , which had been decorated in a Shrek theme in his honour as well as having Good Luck banners on the walls, and  we added my cheese straws to  a generous savoury buffet. One young man was sitting patiently at the table desperate to begin with the party food and another took his pizza into the conservatory to enjoy in peace. But we were surrounded by staff eating with us and chatting, reminiscing about the fun times that they had enjoyed with Joshua and the tricks of his – like hiding the telephone and playing hide and seek – that they would miss.

Joshua might have shied away from the large group, but he loved it and milked all the attention. He joined in and even ate some party food, and he seemed to sense that the party was in his honour somehow. He waved at the staff gathered around the table and would occasionally flash his tummy at them too. It was easy, to feel the love in the room – he adores the staff and they clearly adore him in return and they kept telling me how missed he was going to be and how his weekend would never be the same again.

I was given a card that they had all written lovely good luck messages in as well as a beautiful photo album, full of photographs of their many outings together and the various members of staff that he has been with over the last 4 years. I opened the album and started to read a message, but I had to stop as I felt my eyes prickle with tears. I thanked them but said that I would look at it once we got home.

It was a very emotional party, I am not very good at change or goodbyes, Joshua is much better equipped for both. But the overwhelming emotions that I felt were love, gratitude and pride of our son. I was proud of myself too, for managing to hold in the tears while I was there, but that did take supreme effort and the floodgates opened once I got back in to my car and again later on the telephone when I spoke to his keyworker. It seems hard to believe that he will not be staying there ever again, although I have agreed that we will come and see his keyworker in the future, and that knowledge helped me to say goodbye. I want them to know what a great job they do for our families, they are a lifeline for many of us, but I am confident that I made that clear.

We left Joshua there for his final night and he was treated to a special trip to Donalds,just him and two members of staff, which of course went down very well. I teased the staff and told Joshua to make the most of his final stay and to stay awake all night long. But when I rang to check all was well at 9pm, he was tucked up in bed already, oblivious to the tears that were being shed over him. He has the best idea, love them while you are there but then move on to the next stage without looking back,  he is confident that he will be loved, wherever he goes – and so far, I do not think he has ever been wrong.

Busy Bees

There is a saying that I have heard, if you want something doing, then give it to a busy person. Before we had Joshua and I worked full time, I used to think that I was busy, then we had a baby, and after 6 months maternity leave, I went back to work for 3 days a week, then I felt really busy. When Joshua was 4, he went to school, and I began to work four days a week, but they were shorter days as I would collect him from our local primary school, so I felt busy then. Joshua moved to a special school and he was transported by taxi, so I increased my working hours, but always kept my Fridays off. In 2011 Joshua moved to his current special school, so he was still transported by taxi, and I started to get involved more in school by becoming a School Governor, volunteering in class on my Fridays off and three years ago, I started to run a coffee morning for parents on the last Friday of every month and I felt busy then, as I was virtually working full time.

I have not worked or volunteered in class on Fridays for a while now, but I am a member of a committee that holds its meetings on  some of my days off at school and the Coffee mornings are still thriving, but most Fridays I am able to choose how to spend them, whether it is with haircuts or meeting friends for lunch, that is still my day of rest, while Joshua is at school. Then almost 4 weeks ago, my Mum was admitted into hospital over two hours away from home, and I had to work out how I could make regular hospital visits. Since then, I have been over visiting Mum a couple of times a week, sometimes with overnight stays, so that I can make visits on consecutive days. So now I know what busy really is, when I have been juggling home, Joshua, hospital , school and work, and I realise that I was not actually very busy before this time as my life has expanded to find time for this new, but hopefully short-term, commitment

So, yesterday , while Joshua was at respite, we took time out to do nothing! We visited a spa for three hours in the afternoon, with my sister and niece, and it was blissful. As soon as we arrived, we sat in the outside jacuzzi, surrounded by stunning scenery, watching the neighbouring sheep and horses in the fields and the rhythmic sound of wind turbines whirring on the hills behind us. It was a perfect antidote to how life has become recently and I did not want to get out. I tried a sauna, steam room and foot spa and then went to the relaxation room where I promptly fell alseep on a giant beanbag for a siesta. When I woke – no idea how long I was sleeping for as there were no clocks in the spa – I returned to my favourite location in the hot tub. There were no mobile phones allowed and so I was not expecting a phone call from respite or a text update from Mum, it was just total relaxation and it was very much needed and appreciated.

I keep being told by a range of people, that if I am to take care of Mum and Joshua, that I need to primarily, take care of myself. Certainly yesterday, I put that into practice and I finally realised what these well-intentioned people were talking about. While I will not visit spas every week, I have committed to make some time for myself in my hectic schedule, at least until things settle down.


All Change!

Yesterday morning at work, I got the telephone call that I have been waiting for,  for a couple of weeks : our social worker rang to tell me that our choice of adult respite provision has been approved by panel. I knew that it was being heard ten days ago but since then, there had been silence and so I was beginning to fear that it had been rejected and that we would have to go through the painful appeals process.

But no, the decision was made and actually approved a week ago. So now we are free to begin the introductions process apparently, so that there should be no gap in provision. When Joshua first went to his current provision, we had a lengthy induction process with him staying longer every month : the first month we took him for tea and stayed with him, then a month later we dropped him off for tea but left him to it. Then the following month he stayed a full Saturday and we picked him up after tea and then, he stayed for a full Saturday, both day and night. So it was only in month five that he stayed for his whole weekend. This phased introduction was to give him the chance to get familiar with the place and staff and for them to learn more about him. When we had the assessment at home, I had explained that Joshua was very laid back and that he handles change well and that I had never known him pine for me or get upset when I left him somewhere, such as nursery or school. But they had a set routine for phased introductions for every child.

This time, now he is an adult, I am hopeful that we can condense his introductions into a shorter period and hopefully use the Easter holidays to get started with some daytime visits. Joshua still does not pine or get upset when I leave him but he is certainly more aware than he was 3 years ago, nowadays. When he first began at his current provision, their main challenge was the fact that he was asleep all the time. They had to plan activities in the day for when they thought that he might be most likely to be awake and he was often curled up on their settee asleep. He rarely sleeps in the daytime now as his nighttime routine is so much better, so he is much livelier than he was back then and he needs more managing and entertaining.

The two downsides of him being more lively are that:

  • He has developed attention-seeking behaviours , such as kicking walls and doors, to ensure that he is not ignored and that he gets his own way. Unfortunately he occasionally also kicks people’s shins or ankles, particularly if they have their back to him or if they are talking to someone other than him!
  • He is more aware that he is being left somewhere new, with new people. In the old days, he was too sleepy to object or probably notice that we were leaving him somewhere. But now he is more conscious of change and while he will not object, we have seen a more timid side to him, He will hold my hand tightly when we arrive somewhere and he will be quieter than normal, while he processes what might be going on.

But on the positive side, he will be able to express if he is not happy in the new provision now, he votes with his feet, whereas in the past he would not really have had the energy or awareness to object. So his feedback will be invaluable in those transition days, as we have chosen where we think he will like best and where suits us for its convenience, now it is over to them to make him feel welcome and  to him, to give our choice his seal of approval.

Joshua is much better at change than I am, he does not look back ever, once he has moved on. So he loves his current respite provision and staff but he has shown that he moves on well, without a backward glance. Joshua is about the here and now. I have known teaching assistants that he has been really close to at school , so much so that you cannot think that he will tolerate a new one. But within days, he is hugging the new TA and blanks the previous one in the corridor, much to my embarrassment. I guess it is a useful survival technique to focus on the here and now and once something or someone is gone from your life, do not mourn their loss, but make new connections instead. We certainly have interesting times up ahead and I am so grateful that our choice has been approved.

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.

Second Viewing

After school yesterday, we returned to the first Adult respite provision that we  had looked around last summer. We wanted to ask some more questions, see how it was now that it was more established and to introduce the staff to Joshua and observe how they interacted. The manager greeted us at the door and she passed the first test as she looked only at Joshua and welcomed him first. Joshua responded with a smile but he was definitely uncertain, trying to work out where we had brought him and why. He  was suspicious and kept giving my bear hugs while we were talking.

There was only one young lady there over this weekend and so we  said hello to her and her carer, then sat around the dining room table talking with the manager, while Joshua roamed the ground floor. He explored and paced but was not interested in viewing a variety of bedrooms. We discussed how they would handle Joshua’s epilepsy more than anything else. We looked for something to amuse Joshua and he enjoyed playing a keyboard in the lounge. He sat next to the carer and stroked her long hair for a while and then he curled up in an armchair for a nap – he is usually worn out by the time Friday comes around. We talked about the next steps if this was to be our choice of Adult respite and how transition would be handled. While it does not have the established buzz of his current children’s provision, maybe no Adult place is as lively as that. This certainly felt more like a home than an institution, which I liked, but in reality it is the staff that make somewhere fun and warm, not the building.

We woke the dozing Joshua and promised him Donalds for tea to get him moving, so we said our goodbyes and left with plenty of food for thought. As ever sleepy Joshua passed the Donalds test, he got excited at his favourite fast food restaurant and he ate all of his chicken strips and chips and drank a full orange juice , before we headed home. I made a note to tell whichever adult provision he ends up at, that a trip to Donald’s would make any stay complete.

Home alone

For the first time that I can remember for years, I am home alone, with only the dogs for company. Joshua is still at respite until later today and my husband has set off on an overseas business trip, just for the week. So last night I was able to please myself and so I had a long, lazy bath as soon as my husband set off, then I had something to eat and settled down to watch ‘Call the Midwife’. Once I had enjoyed my weekly weep at the drama, I called to see how Joshua had been. I always call around 9pm so that I can speak to the afternoon staff who have worked with him and so that he will be tucked up in bed – in theory.

I could hear him awake in the background of my call saying ‘I like you!’ and as he was still up, they tried putting him on the phone to talk to me, but as ever he did not speak but held the receiver to his hear to listen . When they wrestled the telephone back from him, I heard how he had taken himself to bed around 8pm but had recently reappeared and he did not sound in the least bit tired to me.He had enjoyed a good day and he too had gone to the seaside, where we were the day before, and he had run on the beach then eaten sausage and chips. There were a few incidents of ankle-kicking, but a much better day in terms of behaviour, and they were combined with stories of a bear hug and gently patting his short keyworker on the head, with affection.

So I was able to report better news to my husband and then to enjoy an early night and sweet dreams. Hearing Joshua’s happy voice on the telephone, made me miss him more and I am really looking forward to him breaking my peace when he gets home from school, tonight. One night home alone is plenty , thank you very much.

Playing away

Joshua is not at home and I slept last night for almost 7 hours, which is pretty rare these days.I waved him off yesterday morning, with his overnight bag, and I told him that I will see him on Monday. I am pretty sure that he will not understand what that means but his respite stays are usually three nights long, so I am hoping that once he arrived there, he will settle into the weekend routine. I called last night and he was happy , but had grabbed a few naps and had rejected the meal that they had prepared and chose instead to eat 6 fish fingers and a slice of chocolate cake,  which doesn’t sound very balanced but it does sound delicious.

He had also shown some “cheeky” behaviour, which had involved trying to lift the female staff’s tops up! I had had to ask what ‘cheeky’ meant and it was an interesting choice of word. She told me that she was being diplomatic, but I replied that he was not being cheeky, rather he was inappropriate. They had started by trying to ignore him , as we had agreed, but he thought it was a game so was spoken to firmly about it.

This behaviour makes me sad : I want the staff there to like him, to want to be with him, and if he is behaving inappropriately then there is a risk that they will not. When he has smacked my arm, I have pleaded with him not to hurt the people who care for him. I have always been relieved that Joshua is popular and can win hearts with his hugs and twinkly eyed grin. I love that he is known for being cheeky, affectionate and smiley; I would hate for that impression of him to change to someone who has to be ‘managed’ and disciplined. So I am hopeful that last night was a one -off ,  that he was just ‘trying it on’ for his first night away and that today he will settle down. This is his penultimate weekend stay and so I would like this and the next one to go well, without incident, but to just be full of fun.