A Tale of the Unexpected

Yesterday ran out of control and it was not the family weekend that I had planned. Joshua woke up early at 5.30 and was on good form, enjoying a large bowl of porridge for breakfast. I decided around 10 to give Joshua a bath and wash his hair ready for his Dad coming home. He enjoyed his bath, apart from the dreaded hair wash, and as usual, I nipped to his bedroom to lay out his clothes. But I heard a strange gurgling noise and rang back. Joshua was having a seizure and half of his face was under water. I pulled him up out of the water , trying to sit him up, but he was still fitting and he’d gone an awful colour. He was slippery and fitting so he was difficult to get hold of but I knew I had to get him out somehow and onto his side. Somehow I found the strength to lift my 57 kg son up and out of the bath and onto the bathroom tiled floor. I rolled him onto his side and he began to cough and splutter , but there was no gush of water but I’ve no idea how much he swallowed.

Once he was still and had stopped coughing, I wanted to get him off the cold tiles. So it took me a few attempts lift/ drag him across the landing and up a step to my bedroom, where he lay in my bed and I could wrap him up in the duvet. His breathing was very noisy and his chest sounded gurgly. I spoke to my husband and we agreed not to take any chances, but to seek expert advice so I called 999. The paramedics came quickly and listened to his chest and decided that he needed to go to hospital robe checked over. So they helped me to get him dressed and helped a very wobbly, pale Joshua downstairs and into the ambulance. I locked up the dogs and off we went to hospital. Joshua looked a terrible colour and he would not tolerate the oxygen mask that they supplied. Chatting to the paramedic helped the long journey to A&E pass.

Being 17 there was a debate about whether he needed children’s and adult A&E but we were taken to the friendlier children’s, though we were warned that if he was admitted,he would be on an adult ward. Joshua would not stop trembling in his cubicle and his finger nails were purple, so we covered him in blankets and attempted to give him oxygen as his sats were low. A doctor arrived to put a cannula into his hand and he began to have seizures, one after the other . His epilepsy became the biggest problem and he was moved to resusc where he was given two doses of different rescue medication and managed to find a vein for the cannula and eventually the seizures began to slow downs He drifted off asleep so they were able to take a chest X-ray with him being still and immediately the doctor recognised a ‘consolidation’ on his lung and so he was given iv antibiotics immediately.

Joshua slept for an hour while preparations were made to admit him onto a ward and paediatrics were willing to accept him as we had not yet been handed over to Adults. Just as we arrived on the observation unit, my husband arrived back from his overseas travels – this was not the homecoming that I’d planned. Joshua was pleased to see him then nodded off again, so my husband fetched us food and a nightie as I’d been warned that we would be staying overnight given the drugs and seizures that he had had. We shared a cup of tea that the nurse brought and then two doctors came to assess him and ask more questions about his history and his normal abilities, as only the student nurse knew him.

I sent my husband home to look after our three dogs and to sleep as he’d been travelling forever so he looked as grey as Joshua. Joshua then slept soundly, looking hot but more comfortable. We had a surprise flying visitor which was lovely and around 9 pm we were moved to a cubicle where Joshua had a proper bed rather than a small trolley and I was given a camp bed too, in place of a hard plastic chair. We were both shattered after a full on day so I think I nodded off as soon as my head hit the pillow, only waking once when the nurse came with his bedtime drugs.

What a day, but I cannot praise the NHS staff highly enough – from the dispatcher who kept me talking when I was panicking when I first called 999, to the young nurse in A&E who specialised in epilepsy , to the jokey A&E consultant who broke the tension in resusc with his banter and the friendly, helpful nurses in the children’s ward. I am not sure that we would be treated quite as well in Adults A&E or the men’s ward! So I am making the most of what will hopefully be our last paediatrics experience in hospital.

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Watch this Space!

I looked around another possible Adult respite provider yesterday afternoon. In my search I have been looking for somewhere that I could picture Joshua in, somewhere that I can imagine him having fun. This was in a rural location and so the bedrooms looked out over fields, like we do, and so that gave me a good feeling. It is down a long country lane, but within 5 minutes drive of “Donalds”, so that would make our son happy! It is not yet open and so there were no young people there, so I could not judge whether people were having fun or not, but it was well equipped with a games room, sensory room, comfortable lounge and a spacious kitchen where everyone could eat together. There were six single en suite bedrooms, each with their own television.

So it seemed to be well resourced. The garden was still to be developed but they had real potential with space outside. They had a polytunnel for gardening and were getting some bird feeders too. The deputy manager who showed me around said that she had requested a washing line too, so that the young people could help with laundry tasks too. It is designed for 18 to 35 year olds, so he would be surrounded by peers of his own age and it would appear to be more flexible than his current provision : we would book nights, like a hotel booking, rather than being allocated a fixed weekend every four weeks, which may or may not suit. It will require us to be more organised and to do more forward planning as we would be asking for dates rather than being told what we had been allocated.

I liked what I saw and it gave me a sense of peace of mind that our search might be over and to think that what we needed could be just 35 minutes from home, that would be an improvement on the current 90 minutes. As there were no members yet, the team that was there were either engaged in cleaning tasks or they were undergoing training. They asked me questions too. I shared with them the leftover baking from my school coffee morning which made them very happy, so that was a good start too.

My plan is to return with both my husband and Joshua so that they could also see what they think but to start the ball rolling if possible, after speaking to the manager. I understand that this transfer will not be a quick process, that the paperwork would all need to be completed and then our choice would need to be approved by ‘panel’ – whoever they are! And then, if approved, the transition process would get underway, with the involvement of his current provision. I expect that Joshua would have a gradual introduction, as he did three years ago to his new set up; starting with an after-school visit, then staying for tea with us there too, then staying for tea on his own, then one overnight stay and finally consecutive stays. Three years ago Joshua was more laid back and accommodating, I suspect that the new more aware, livelier Joshua would require that more gradual transfer from the familiar to the new.

I would love to see that genuine affection for the respite staff that he showed for the two team members that came to the school meeting this week, replicated ultimately at this new set up. Of course it won’t be instant, but Joshua is a good judge of character in the main, so his reaction to the staff there will be another good indicator of whether he will settle there or not. It is people that he thrives on really, not the availability of a sensory room or the colour of the decor.

I came away with a good feeling that I may have finally found what I was looking for and just in the nick of time too. So let’s see how this pans out……

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.

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!”

Independence Day

Joshua made a really independent stand yesterday as I took him into school late, after the doctor- it is not impetigo by the way! I pulled into a disabled space at school and undid his seatbelt. I then rummaged on the back seat for his back and helmet, but in the meantime he had got out of the car. He has often done that and would come round to the drivers side to fetch me. But yesterday he knew where he was and where he was going, and he slammed the car door shut and he took off!

He ran across the car park up to the sliding doors of the adjoining high school and he began to kick them to get in. The receptionist has to open the doors for you and she didn’t until I approached behind him. I hugged him in the foyer, told him he was clever but had to be careful in the car park. He was very pleased with himself and secretly, I was proud of him too as it showed real awareness and independence.

So I will have to be super- alert as we arrive somewhere familiar and maybe leave his seat belt secure until I am ready. But this is one other sign that he is more aware than ever of his surroundings and what is happening next. That he is taking more control of what he does and does not do and that , with some added road- safety awareness, has to be a good thing .

Homecoming

I am pleased to say that Joshua leapt up out of his chair to greet me home from work last night and he kept giving me bear hugs, suggesting that he had missed me almost as much as I had missed him. So we were reunited and I read all about his weekend and his day at school in his diaries, to get all caught up as Joshua just grinned at me when I asked him about either adventure.

I had a call from school around lunchtime yesterday and my heart skipped a beat : what had happened so soon after his return from respite and once my husband had just left the country? My reaction was no less panicked when it was the school nurse on the phone but she was quick to explain that nothing had happened to Joshua. He had a spot at the edge of his mouth last week and I had been treating it, but it had got worse over the weekend, respite had mentioned that they thought it was a cold sore. But the nurse was querying if it could be impetigo. She did not think that it was but she asked me to get him checked out by the Doctor, as if so, it is highly infectious and needs to be treated.

I knew that I was wasting my time calling the surgery this late in the day for an appointment, they are all gone by 8.45 usually, but I had hoped they could squeeze him in with the nurse practitioner, but that was not possible either. So I decided to consult the pharmacist but I knew that he would not be impressed heading out once he was home and comfortable after school. So I asked Yorkshire Grandma , who met him from school, to try to take a photograph of his mouth , for me to take to the chemist for an opinion. if we could use to technology , rather  than disturbing him, all the better. She struggled as he would not sit still or let her get a decent close up but eventually she sent me a picture that I could use and after work , I took it into the pharmacist. They looked but said that we needed a GP appointment as they had no over the counter remedies. So I was glad that I had not dragged Joshua down there, for that same response.

So I had a look at the real thing when I got home and it does not really resemble the images that I had seen on the internet and I am sure that it would have spread more if it had been impetigo. But I cancelled today’s taxi and I will start calling for a Doctor appointment , with the rest of the town, on the dot of 8.30. I am hoping that I will get an earlyish appointment, so that if ruled out, I can then take him into school. But whether it is ruled out or not, this sore will still disrupt his school day and my work day considerably. But I need to know if it is infectious, so that I can take appropriate action. But I have had so many welcome back kisses, that if he is infectious, the damage is already done.

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.