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.


Fits and starts

Joshua woke up lively yesterday and came downstairs at 6.45, with no apparent side effects from his seizures or his  dose of rescue medication, much to my relief. He was pleased to see me and Yorkshire Grandma and was full of beans, so he had breakfast as usual and I got him dressed for school. Although I sent him off for school, with a note in his diary to explain what had gone on, I still had an uneasy sense of anxiety all day at work that I may be called by school at any moment to hear about more seizure activity. I jumped each time the phone rang and I was never far from my mobile, just in case they needed me to leap in my car.

The worst calls that we have had in the past are when the emergency medication has been given,but when it has not worked and so an ambulance has been called. That is a terrifying call to receive and on several occasions we have had to meet Joshua already at A&E and then, even through his post-seizure, drugged-up state, the relief on his face to see us,his parents among a sea of strangers’ faces, is visible. That must be a bewildering time anyway, coming round from a daze, to find yourself in a hospital bed, would be terrifying. The trouble is that at A&E, the doctors do not know Joshua or his epilepsy, and so they are working blind. In trying to establish if he has recovered sufficiently well to discharge him, the medical staff ask him questions that he could not answer on a good day, let alone post-seizure. In the end, they tend to ask us, as his parents, if he has returned to normal, normal for Joshua that is.

This will be yet another thing that will change after March, he will be classed as an adult and so will no longer go to the relatively pleasant environment of Children’s A&E, he will have to fight his corner with other adults. I was told that once he was 18, there would be no provision to  stay overnight with Joshua in hospital, should he be admitted onto a ward. I will have to fight that battle if it comes to it, but even as an adult, Joshua would need a chaperone , someone with him to be his voice and someone there to keep him safe too. I suspect the nurses would be begging us to stay with him to try to keep him in bed, to reassure him and to take care of his needs. Joshua would not be the first adult with learning disabilities to require a hospital bed, so there must be precedents.

But thankfully, on this occasion, the emergency medication did its job and there was no re occurrence of the night before’s seizures and he has promised me that he will also try to keep them at bay this weekend while he is away, in respite.

Intervention dilemma

When I got home from work last night, Joshua was pleased to see me. He was snuggled under a blanket watching his Live 8 show with Yorkshire Grandma, the picture of contentment. He gave me one of his bear hugs and told me that he liked me and all was well. We had an early tea , so he had an early bath as his hands were cold, so that warmed him up.He was reluctant to get out of the bath and he soaked the bathroom floor with his protest splashes.  He pottered about in his pyjamas but was tucked up in bed before 9pm and I expected to be in for  a quiet night. I came downstairs to watch some television,  but I soon nodded off.

I had a rude awakening  a few minutes later, with my husband shouting for me, first through the baby monitor that I bearly acknowledged as it filtered into my dream, but then he came downstairs to wake me with the words that I hate to hear : ” Joshua is having a do!” That brought me round immediately and I ran upstairs, to find a quivering Joshua on his bedroom floor. He had either fallen out of bed or he had climbed out to come to seek help and had fallen, but he was wedged between the bed and his bookshelf, rapidly going in and out of spasms. They did not slow down while we comforted him and my husband helped him back onto his bed between seizures. I sat with him, rubbing has back for several minutes,but they kept on coming. As we did not know exactly when the first one started, we agreed to give him his emergency medication, to intervene as they showed no sign of abating.

It is never an easy decision to administer Midazolam  as it leaves him so groggy for 24 hours afterwards, but on this occasion, as the seizures kept coming, it was the right thing to do. Joshua seemed to know what was coming and he took the anaesthetic well, with no spillage , which is always a relief when you are syringing it into his gums during seizures. Thankfully, almost immediately I felt his body relax and quickly, the frequency of seizures began to slow down. I lay next to him, singing and talking to him, as he fell asleep and the last spasm left his body. My mind started to imagine what might have happened if he had got to the stop of the stairs before his seizures began, so I held him tight, relieved that he had fallen where he did.Eventually, I slid out of his bed and we watched him closely from the baby monitor downstairs, as we had our hot drink before bed.

As I went up to bed, 30 minutes later, his breathing was loud and laboured and he was sprawled across the bed, fast asleep. Taking the baby monitor to bed was not going to reassure me enough and so I curled up across the bottom if his bed to watch him and listen to him, and grab what sleep I could. At 2.30am I climbed off his bed, his breathing sounded normal and he was no longer clammy to touch, so I retreated to my own bed for three hours of better quality sleep. I had agreed with Yorkshire Grandma, who is living with us for another week, that I would go swimming this morning, but I am not now going as I want to see how he is when he wakes up later – I will swim another day.

Despite many years of practice with epilepsy, it never gets any easier to see Joshua suffering like that and I never give him Midazolam lightly, it is always a dilemma. It is of course typical as I had sent an email to his respite provision, just yesterday, bragging that he had not needed any intervention all over the Christmas holidays. Let’s just hope that this is not a new cluster of seizure activity, lets keep our fingers crossed that last night was a one off and that it will not rumble on this respite weekend.

Behave yourself

I had some advice yesterday on how to handle Joshua’s behaviour, since he has started to smack my arm or kick out, typically when he is objecting to something or if he is craving attention I think. I had a telephone conversation with the Children’s learning Disability Team before Christmas and I was invited along to hear some ‘pointers’ on how best to handle this change in his behaviour. We are all agreed that he is trying to communicate something and he needs to be shown a more socially acceptable means of saying what he wants to say. when you are virtually non-verbal and do not sign, you have limited resources at your disposal to communicate with and objecting with a hit to the arm, might seem an obvious one.

Most of the strategies that the two learning Disability nurses showed me, were already in place with school, where I have already had a couple of meetings to discuss this change. I had been tolerating his smacking and kicking until it moved beyond just me, to include teaching assistants at school and Yorkshire Grandma on one occasion that I was working away. The nurses were full of praise for what I had been trying and for the support that school had shown us. They too suggested visual support to help Joshua to process what was happening ‘now’ and ‘next’ and equipped me with some pictures of things that we might do at home. I have said before, Joshua is all about the here and now and so I am not sure how he will handle the concept of ‘next’ but we will certainly be trying it out both at home and at school.

They also gave me a presentation on my reactions to his behaviour and I explained that wherever possible, I walk away from him once he has smacked me, to deliberately remove my attention. More often than not, he is delighted to see me back again after the ‘timeout’ and we can start dressing or undressing again, for example., without any more incidents. The nurses suggested that an egg timer could be introduced to show him the length of time that I will be gone for. Again, I can give that a try but I am really not sure if he understands the concept of passing time, but let’s see. It will at least ensure that I am consistent in how long I stay away for if I am timing it.  The timeout is not for him to think about what he has done particularly, as you are taught when they are tantruming toddlers, but more to show him that his response does not result in any attention, so it is not worth repeating.

They produced a star reward chart too, that he gets something he loves, like his guitar or Donald’s, after he has earned five good behaviour stars. I am not convinced that this is the best way forward with Joshua, as I doubt that he would grasp the reward concept and my priority is to get him to communicate in a more appropriate way, rather than getting him to conform necessarily. But I appreciate their thoughts on how best to tackle this stage in Joshua’s development. The timing seems right to intervene while it is at a low level and hopefully we can redirect him in time for him moving onto adult daycare, away from his ‘safe’ school environment where he is known and he is popular. A new respite or daycare provision will not have that history on him, to know that he did not always communicate with little kicks or smacks, and I am determined that he does not start off there, wherever there might be, on the wrong foot.

Back to School, back to books

Joshua returns to school today after being off for over two weeks. I do not know if he understands or not, or if he chooses to disbelieve me or if he knows exactly what is going on. when I reminded him that it was back in the ‘bus’ to school last night while he was having a bath, he shook his head vigorously either in denial or disbelief. Today pre-Christmas normality resumes : the taxi will come around 8.20, he will take a packed lunch, he will have a full day at school, creating havoc, and Yorkshire Grandma is coming back from her daughter’s house, where she has stayed over Christmas, to greet him at the end of the school day. He will have no more lie ins until 9.30 and then a morning in his den in his pyjamas, so this week might come as a shock to his system.

It is  a big week too as not only does he need to find the energy to return to school, but he also has his respite weekend at the end of the week. So he will go from spending 24/7 with his parents, to being away from us from Friday morning, until Monday evening. Possibly he cannot wait  for that, it is certainly not normal for a 17 year old to spend so much time at home with their parents over Christmas I am sure, but I have loved having all of that time together and I will miss him.

This year is not only Joshua’s 18th birthday, but of course, that of his peers – the babies that we spent the first years of our lives socialising with. I met and became friends with five mothers at ante natal class and the first of our group to deliver a baby, came on Boxing day, so she is 18 already. Another girl was 18 last weekend and she had a family meal and then went drinking with her friends. We have had an invitation to the third ‘baby’s’ 18th birthday party at the end of this month and we will be delighted to go and celebrate with her family. Again I am told that she will be going into our local city after the family celebration with her friends, so it will not be a late party. The two boys will be 18 exactly a fortnight before Joshua, next month, during the half term holidays and I have not heard yet how they will celebrate.

We have not yet decided how we will celebrate this anniversary with Joshua, but we too will probably plan a family party as well as something with friends. The fifth of March falls on a Tuesday this year and so he will be at school on his actual birthday, so I will send in party food so that sixth form can make a fuss of him, before we do something in the evening together. I would love to know how Joshua would like to celebrate, so that we could reflect that in our planned celebrations, but I suspect that as long as it involves food  – preferably Donald’s sadly -and people that he loves, he will be satisfied. It is more of a momentous ‘coming of age’ to us than to him and Joshua will not be desperate to go to the pub with us, to enjoy his first legal beer, as many of his peers do. He has tried his Dad’s beer before and has never been impressed, so he may be sticking with his beloved orange juice.

So let’s  get back to the normality of school days for another couple of months, before we begin to party again. I know how quickly Joshua’s birthday slides in after Christmas and New Year, and by then we will be into Spring and this is how the year slides away from under our feet.

Buried Treasure

With the new year, comes a desire, or need, to tidy cupboards and drawers which have not been tidied for years, in order to find space for new Christmas presents to live! That is how I spent yesterday morning, in a spree of upcycling to school and charity shops, dumping in he bin and reminiscing. I found all sorts of presents that I had bought over the years but had never given away and I found clothes that had never fitted in the dark recesses of one cupboard. Joshua rummaged through a pile of children’s books that I had found until he found a Madagascar sticker book, so he must have recognised the characters. He handed it to me so we took a break, sat down and looked at the pictures together. Then I carried on but he kept passing me the book, until I realised that he was asking to see the film and once he had successfully communicated his request, he left me to the tidying up again!

But in one drawer, I found some very precious documents, carefully tucked away. I took the time to open up and read the letters that I found tucked into a paper bag with Joshua’s birth announcement cards in. My father in law had created the cards with some photographs taken in Special Care  – one of Mike holding the tiny pink bundle that was Joshua, one of me  bathing him and another of us having a cuddle. It was quite a memento so I kept a couple of the blanks, for purely sentimental reasons, and no useful purpose.

Lying next to them, I found a bundle of letters that we received when news of Joshua’s arrival got through. They are hand written, heartfelt messages of love and support from a surprising range of family and friends. They all begin by congratulating us on Joshua’s arrival but swiftly go on to wish us hope for his future, tell us not to worry and offer advice to live each day as it comes. Of course, this find stopped me in my tidying tracks and I had to sit still and read them all. Some from people who are no longer alive and some from people who are very much still in his life now. They were precious letters from the outside world, brought by my husband into the Special Care Unit where I will have read and re-read them and probably will have read them out loud to baby Joshua. I have emails too, but there is something more personal about a hand written letter, it shows the effort and time that was put into the correspondence.

Of course they made me cry but they made me smile too but they all took me back to that painful, frightening time in SCBU, when everything was unknown and daunting. So these letters were not dumped or upcycled, but once they were read, they were carefully folded up again and returned to their drawer for safe-keeping. Luckily we have lots of other places to find for Christmas presents to live, these precious documents do not need to be disturbed, except for occasional reading, maybe in another 17/18 years time.

Follow your Dream

People with disabilities should have as much opportunity to follow their dreams as anyone else, they should not be held back by their disabilities.  We watch the paralympics in awe , as blind skiers fly down the slopes and runners with impaired limbs, race around the track.  But last night, we saw a young man, who happens to have downs syndrome, dance his heart out on ‘The Greatest Dancer’ on BBC1. His proud Mum introduced him and explained how he would ‘plod’ when he walked but that his feet came alive when he danced. Then we saw it for ourselves and we watched him light up the stage. In that TV talent show, the mirrors pull open if at least 75% of the audience press their buttons and then they progress to the next stage of the competition.He danced his heart out and when the mirrors pulled back to reveal the audience, he clearly fed off the reaction of the crowd and he beamed as he performed at an even higher level., like  a real showman.

We saw so many people visibly moved by his performance, his reaction, his obvious pure joy at being there and meeting his idols and his clear love for his Mum too.  It was for me the highlight of the show and they clearly saved the best until last. The ‘captains’ did not patronise him, they did not talk to him in an insulting way – “aww bless him, the disabled boy is having fun”. But they told him to keep dancing as it was good for his soul, and we could see that it was true. His best friend was in the audience and when he got through to the next round, Tom went down onto the stage to congratulate and hug his best friend. That too was a beautiful moment.

Of course, me being me, I wept throughout the performance and the aftermath. That is what I would like for Joshua : to find his passion and to develop a skill that makes him truly happy. I already know that he loves his mum, he is not embarrassed to hug me in public, but I would adore him to have a best friend too, someone of his own age who was proud of him and supported him like we saw on The Greatest Dancer last night. I am already looking forward to seeing him perform again. I doubt that he will win the competition – £50,000 and to perform on Strictly – as he was not the most technically accomplished dancer there. But if votes were won for passion and the impact that dance has had on his life, then he should win the first prize.