Incommunicado

For the last 5 weeks, I have been dashing  around juggling hospital visiting, a busy time at work and our home life. I have been spending all of my days off plus at least another weekday visiting Mum and so it felt very odd to be at home yesterday, on my Friday off. I began sneezing on Tuesday night and that was joined with a sore throat and earache by Thursday, so now I am in the midst of a cold, which means that I feel lousy but more importantly, I have to stay away from Mum, as I cannot risk infecting her while she is so ill. My head knows that is the case but my heart was pulling yesterday, as I had not seen her since Tuesday. We heard that she had felt really unwell on Thursday and so her limited texting, had almost stopped altogether. So yesterday I had to be patient: I had to wait for Mum to reply to my texts or for my sister to arrive as a hospital visitor to report back and in the end both came around the same time and it was with relief that I heard that yesterday was a better day than the one before.

We have been spoiled with technology, as in the old days, pre-mobile phones, you had to ring the ward and they would wheel a telephone to the patient, if you were lucky but more likely, you had to visit to get news of the patient. But we now have email and a whats app group to spread updates throughout the family, which is a much easier way to communicate than to have to telephone everyone after visiting, which is exhausting, time consuming and inconsistent. But Mum was not well enough to update us these past two days and she cannot receive wifi where her bed is in the ward, so that even if she was feeling well enough to send emails, they do not send until she has the benefit of one of our hotspots. I did try calling the ward for an update on Thursday night but nobody answered the telephone and I know from experience, how busy the nurses are on Mum’s ward, so I did not let the phone ring, unanswered, for too long.

I like to know what is happening with my loved ones at all times, so today I will rely on my Aunt who is visiting to update me on Mum later today. I will also be wondering what is happening with Joshua as he has his first overnight stay at his new adult respite service tonight, as he will be staying there from midday today to midday tomorrow. I will call them tonight around 9 pm for an update on how he is doing, but then I will have to leave them to it until I collect him the next day. I will work on the basis of no news is good news there as they have my contact numbers if they have a problem or need me to collect him early. Whereas yesterday with Mum, I felt that no news was bad news when she was not responding to our texts as I imagined that she felt too ill to bother with texting. In both cases, I am going to have to let go and wait patiently to be informed, which is a skill that I need to work on for the future.

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Talk Talk

I have described how Joshua has defied the odds with his vision and his hearing, but his ability to talk has been more challenging and variable throughout his life. When he was about one year old, his favourite greeting was ” Hiya” and he used it plenty to anyone who would listen. When he started mainstream nursery and then school, he had some language. He used key phrases appropriately :  “Put some more in” when he demanded more apple juice, ” It needs batteries” when his toys stopped working, ” press that button” meant get a move on and ” daddy do it” when he wanted his father to fix something or if he wanted help.  I can clearly remember the first time that he spontaneously spoke when, he was in the back seat of the car and I was driving, and out of the blue, he said ” I like dolphins!”. My eyes filled with tears, I parked the car and turned around to tell him how much I liked dolphins too – that was our first conversation. We really thought that we were home and dry in terms of his ability to speak, he could count, name colours and identify animals and he was making progress, his speech was delayed but it was there.

But when he was 7, all that language stopped abruptly and he became mute. We hoped that it was a side-effect of his anti-epileptic drugs but once weaned off that drug and onto another, there was no improvement. His consultant eventually admitted that it was likely that seizure activity had robbed him of his language. If seizures are left uncontrolled, they can damage the brain further and the part of Joshua’s brain that controls his speech, had been under prolonged attack, while we weaned him off one drug and increased its replacement. So it was heart-breaking, his epilepsy  was not just agonising to watch and deal with, but it left a permanent scar on Joshua too.

We were heart-broken, as our cheeky, happy boy remained silent and his little phrases and even his funny pronunciation of the number 16 – he used to call it sickaleen – were all just dim and distant memories. With no language, his ability to fit in at mainstream school was in jeopardy. We worried endlessly about how he would cope and how he could get what he wanted and needed, without his own voice or if we were not there to be his interpreter. But without talking, he learnt how to communicate with pointing , gestures and using objects of reference and we resigned ourselves to the likelihood that he would be silent for the rest of his life. I resisted sign language, as I knew that he had been able to converse and I hoped that he would again one day.

But Joshua is a determined battler and over the last few years, he began to imitate at first, copying lots of words that he heard and repeating them endlessly and he would finish lines of favourite stories and songs. It was such a thrill to hear his voice after so long and so it would not matter that he would get stuck on the same phrase which was not always sensible or relevant, such as ” no glasses”, ” no pants” or ” I not poorly”. At present, Joshua’s vocabulary is pretty limited, with ” I like you” and ” thank you” being his mainstay, but relying much more on gestures to get what he wants and needs; But as I say, if you only have two key phrases, what lovely positive ones to have in your repertoire and he uses them to great effect.

More than anything, I would love to have a conversation with Joshua. To find out what he is thinking and how he feels . I am a good talker and listener but our interactions are one-sided. and I would love to share more with him. I know him well enough to intuitively know, in the main, what he wants or is trying to communicate. so perhaps we do not need words. But his life would be easier if he had words to use with the outside world. I still have faith that his vocabulary is locked inside his brain somewhere and at some point in the future, those words may well come back to the surface.When that day comes, we will rejoice and welcome Joshua’s language back with open arms. But in the meantime “thank you”, perhaps it is better to have had something and lost it, rather than never having had it at all.

Voting with his Feet

I was excited yesterday because Joshua’s Riding for the Disabled sessions began last night, truly confirming that summer had arrived. It ends every October as it is an outdoor area where they ride and so the dark nights and cold weather prevent it from running through the Winter months. He really enjoyed the last sessions last year, laughing, waving and showing off, so I was optimistic for RDA’s return. My only reservation was that he was not kicking last Autumn, and so I was not sure how that might work when riding a horse.

I had asked Yorkshire Grandma to make sure that he was fed and wrapped up warm ready to leave the house at 6 pm. I was home from work at 5.40, so had time for a quick cup of tea then get on our way as the stables are 20 minutes away. Unfortunately when I got home, Joshua was fast asleep on the settee and even the dog commotion of my arrival home had not disturbed him, so we knew he was in deep sleep. Ordinarily I never wake him . if I can avoid it, as it can lead to seizures. But it was too short notice to cancel and I left him as near 6 pm as I dared, before I roused him and put his boots on. He gave me a smile on waking but he was pretty cross when immediately I began to put his splints and boots on. He still tried to sleep on the car journey to the stables, but could not get comfortable.  I think I would have been pretty cross too if my sleep had been disturbed and I had been bundled into a car when all I wanted to do was sleep.

We stayed in the car once we arrived ,while the class before us finished off as it had turned wintry cold. But Joshua began to get restless and started to kick at the car to get out. Once outside he was stir crazy and wanted to get onto his horse, Digby. so he was leading me a dance while the previous class dismounted and then two smaller children got onto their horses first. At one point he was twisting and pulling against me that, I am not really sure how, but  I lost my balance and we both fell flat onto our backs on the ground. I landed on my elbows which are now sore and grazed, but Joshua lay on his back waiting for me to pull him up again, with a surprised look on his face. I jumped up, dusted myself down, then helped to heave him up too, when thankfully his Dad arrived and then it was time to get onto Digby.

Joshua was keen enough to walk up the ramp and to get into the saddle, but as with cars and supermarket trolleys, he now cannot bear to be still – which was not a problem last Autumn. So he was impatient while they were adjusting his stirrup length but luckily they set off and he looked happier to be moving. He went round the yard a couple of times and gave us a big wave when he passed us, although he was not smiling, he looked rather agitated. When he passed the mounting block, he made an effort to get off the horse and as his session wore on, he became more determined. In the end we intervened before the end of his lesson, and asked to get him off before he hurt himself or one of his patient assistants. He was frozen when he got off the horse and he gladly headed for the warm car.

I was disappointed as I had been looking forward to the only after-school, physical activity that he does, but I should have, with hindsight, left him asleep. He really did everything within his power to tell me that he did not want to go riding last night, but as it was the first one, I ignored his communication and ploughed on, then regretted it later. I plan to take him one more time at the end of the month, and then will see if it was simply because he was tired and cold that he objected. If he still makes a fuss then we will pull out, as they have a long waiting list of potential riders and so we should allow someone else have our place if it does not make him happy any more. He has been riding for several years now, maybe 7 or 8, so it would be the end of an era, but perhaps this is not an activity that adult Joshua wishes to partake in and he certainly voted very effectively with his feet last night and I have bruises to prove it.

Weekend Ways

After a busy week dashing around for me and my husband only arrived home from his travels after midnight, we were both ready for a Saturday when we pottered about the house doing chores, but nothing too ambitious. But Joshua had other ideas and he communicated them very effectively. Mid-morning he had had enough at home and he passed me his splint, indicating that he was ready to go out. I told him that we would go to Tesco soon, so he upped his game. He went upstairs and began slamming the landing door really hard, so that I came running, to stop him from making such a noise and prevent him from breaking the door. So I took the hint and put his splints and boots on.

We had an exciting morning out : we delivered some shortbread to a friend and Joshua waved from the car. Then we parked up in town and we walked to the chemist to collect his prescription. They were still preparing it and so he found a broom while we waited, and began to sweep their floor for them; he did such a good job, apart from waving the brush around his head and potentially tripping their customers up, that they offered him a Saturday job of sweeping and greeting customers at the door! Then we went to a cafe for brunch, where we sat in a booth where he ate toast and drank orange juice, while I had a mug of tea, and we watched the world go by. He seemed satisfied by his outing but the real highlight was pushing the trolley around Tesco!, he got excited as we approached the store. He did a bit of kicking of my ankles and the trolley, but nothing excessive and nothing targeted at other customers, thankfully.

When we had got everything on our list, we headed for the tills where a small boy wearing an epilepsy helmet just like Joshua’s was sitting waiting for his parents. Joshua spotted him and gave him a big friendly wave, which made me smile – it was as though he recognised a fellow member of his ‘gang’! He sat  beautifully, cross legged, while I packed up our two bags of groceries and only jumped up when I told him that I was ready, which is rare. When we got home, he was content to sit in den watching a film while I made a stew, as he had been satisfied by his trip out, so he did not demand terribly exciting distractions to make him happy.

But at around 4pm the door slamming began again and again, he brought me his splint. My husband was in the bath, trying to soak away his jetlag, so we took the dogs to the park so that everyone could have a run about and burn off some energy. The park was muddy but the dogs loved it and Joshua enjoyed throwing sticks for them to fetch and chew. We walked right around the perimeter to ensure that he was worn out and on our way back to the car, the wind was blowing full in his face,with some drizzle, and it really made him giggle.

Joshua cannot always get his own way at weekends, as sometimes there are plans or jobs that need to get done, but as we had a fluid day, I was able to listen to him communicating and to respond.

Strange Sunday

Joshua was very clingy to me all day yesterday; he followed me around all day and he hovered in the kitchen while I cooked, hooking his arm around my neck. All day long he was hardly out of my sight. I wonder if he too was re-living the horrors of last weekend in his mind? Or if he felt odd, perhaps with seizure activity in his brain, and did not want to be alone? But something was definitely different to usual, when he comes and goes from his den.

We made our weekly trip to the local supermarket together, when I allow, and encourage him, to push the trolley for me. He enjoys that but he is a pretty wild driver and the trouble starts when I want to stop at an aisle and select something for the trolley. It is impossible to hesitate, browse and choose which version to buy, it has to be a snap decision that is hurled in the trolley as he flies by! Normally he is happy to sit on the seats while I pack the bags, but not yesterday : he was adamant that he was going to push the trolley out of the shop for me, so I had to pack with one arm and hold the trolley back with the other. Although the man at the till could see I was challenged, it is maybe the first time that I have not been asked if I want any help with my packing! I think he was enjoying the battle of wills in front of him too much.

Despite his unusual behaviour, Joshua communicated beautifully on several occasions with me yesterday : after I had unpacked the shopping at home, he came in to survey the kitchen. He then grabbed a bag of newly purchased satsumas and brought them to me, clearly indicating what he fancied to eat. After tea, we were sitting on the settee watching TV, we had enjoyed an early bath, and he simply came in,sat down next to me and said ” Bed!”, well you can’t get any clearer than that. I hugged him and off we went upstairs, even though it was only 8pm – he had had a busy day after all. He took his bedtime medication and I tucked him in, and as I leaned in to give him a good night kiss, he piped up with “Bye Bye”. What a brilliant way to end a full-on Joshua-filled day!

Hanging on the Telephone

While my husband is overseas, he is 9 hours ahead of the UK and so he is getting up to start his day just as I was heading to bed and the same is true of him when I get up. So mid afternoon for me, he will be setting off for the airport to head home again, with his business already completed. Due to the time difference, Joshua has not been around when he has telephoned home to ask after us all. But Joshua has never spoken to anyone on the telephone : at the weekend, he was hovering by the phone when I called his respite provision and looking interested. The member of staff that I was talking to told him that his Mum was on the phone and handed the receiver over. Apparently he smiled and even waved at me, so he knew who was on the other end, but he said nothing as I repeatedly said hello and asked him questions.

For Joshua, the telephone is not a communication device, but it is a fascinating toy. It has buttons to push, that beep and light up. He will pose endlessly in front of the hall mirror holding the phone to his ear like he has watched his parents do. He used to do an impression of me on the telephone while he does that: ” yes…yes… yes…. hahahahaha” which was hilarious but I haven’t heard that for months now. Once he has posed and admired himself with the telephone, he carefully places it in the dog bed beneath the mirror in the hall, so it is often lost under a sleeping dog.

Over the years we have had a few mishaps with the telephone : he has dialled 999 twice in my memory! Once we were called back by emergency services to check that all was well but once, at Granny’s house, the Police actually came to the door to see that everything was OK and I had to show them the perpetrator, as we had all been eating a meal while he made his call for help. Again at Granny’s house, the cordless handset went in to the washing up bowl of water and was ruined and I have lost count of the number of mobile screens that he has cracked; the most dramatic was when he threw my Blackberry out of the patio doors one summer, into the garden.

So although he does not use a phone personally, Joshua is very drawn to them. When I am speaking on the telephone, he will often do anything to try to get my attention, to try to focus on him rather than the caller; That can range from pulling his trousers down so that they are round his ankles and is in danger of tripping over them, to going upstairs and perhaps posing at the top. He often looks as though he wants to engage with the caller, by getting really close, but if he is given the opportunity to speak, he usually smiles, waves or kisses the phone but never utters a word.  Joshua is fascinated by hands-free calls in the car as the familiar voice fills the car but cannot be seen. He once had a Facetime call with my sister and he enjoyed that, perhaps he would engage more if he could see the other person’s face while they were speaking.

If I thought that he would engage with me when I phoned respite, I would call in the daytime so that we could ‘chat’ ,but instead I wait until he is , in theory, tucked up in bed. I would love to hear Joshua speak on a telephone one day, even if it was just to say one of his favourite phrases , such as ” I like you” or “No way!”

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.