It seems to have been successful to allow Joshua a quiet day at home to recover : he had much more colour in his cheeks when he awoke, he looked much less washed out. The taxi driver and escort reported that he arrived at school happily and full of mischief and his diary reported that he had a much more active day at school too. So my plan for him to rest and reset seems to have worked and I am very relieved too as we are out of practice with daily seizure activity and these are not days that I wish to return to. At one time, he would begin every day with a couple of seizures before he had even got out of bed and so we had the daily dilemma of whether or not he should go to school. He was just exhausted all of the time and we lived life on a knife edge. Compared to those days, pre-surgery, he is much improved and it is often a useful reminder to remember how far we have come: last week felt like a bad week for seizures but it was actually just a shadow of what he used to have to tolerate every day, and I am most grateful for that, and everyday that we are not visited by epilepsy is a gift.
Then there were the exhausting times post-surgery, when Joshua would not sleep for 48 hours after seizures; when he was so restless and starey-eyed and looked as though all he needed to do was sleep, but his brain would not allow it somehow. Those dark days were not sustainable for any of us and thankfully, that time has passed too. Yes we had some bad nights’ sleep last week, but they are isolated disturbed nights and in the main, he sleeps better now than he has ever done in his life.
So on this wet, grey November day, I am happy to celebrate how far Joshua has come and lets hope that this week’s seizures, are just a blip on an otherwise pretty even keel.
I have everything crossed today that the restorative powers of sleep have worked their magic on Joshua’s seizure activity. After spending all yesterday morning in bed , we had to go out to collect his prescription and so I combined that trip with a short walk in the park. He was happy and sociable in the chemist and set off on the walk enthusiastically, throwing sticks for the happy dogs, but then he kept halting for absence seizures when he froze , his eyes would stare up at the sky and I feared that he would fall to the ground, So we turned back, cutting the walk short , not wanting to be stranded too far from the safety of the car.
Once we got home, Joshua returned to his settee in his den and curled up for another nap. He seemed to know what he needed and so I did not push him again and we shared a lazy afternoon at home. The spectre of seizures stayed away for the rest of the day, even at bathtime which has become a difficult time this week. I did not think that he would be ready for bed at his usual time, given the sleep he had enjoyed during the day , and he sat nicely with us watching music videos for a while before leading me by the hand up to his bed, he reappeared twice after being tucked in , but then had slept through , better than I did!
So let’s hope that today he can function normally after a day of rest, that he is restored and raring to go again.
I was working away all day yesterday, and thankfully though sleepy, Joshua was happy in the morning as I got him ready for school, so I had hoped that he would be alright, if a little tired at school. I had my mobile clasped next to me all day, dreading the call that he had had more seizures , while I would be too far away to be of any practical use. Thankfully that call never came and he seems to have had some fun while at school, even though he was exhausted when he got home.
But the dreaded seizures did come, they just waited until bathtime once again and this time, Yorkshire Grandma had to deal with them.She administered his emergency medication once she had got him into bed and by the time I got home, he had slept them off for around an hour. He looked totally washed out by these consecutive nights of seizures and the Midazolam, but still managed to sit up in bed and smile that I was home. I lay next to him for a while and then felt that my presence was keeping him awake rather than helping him to relax, so I slipped out and came downstairs.
In order to try to break the cycle of tiredness then seizures, I have kept Joshua off school and at home today. He has been able to sleep as late as he needed and it was after 10 am before he appeared on the landing ready to get up. I am hopeful that a quiet day at home will help to reset him so that he can resume ‘business as usual’ as this is not sustainable and is exhausting for us all. I am not sure if the seizures cause the tiredness or the tiredness stimulates the seizures, as it is certainly a trigger. But hopefully tiredness is something that we can remedy today, whereas I less able to rectify illness if that is at the root cause and he is brewing something.
Once again it is the unpredictability of Joshua’s seizures that makes them difficult to manage, though I am fully ready for Thursday, which has become a troublesome day of late for the last few weeks. Of course I realise that because I have taken precautions today, that will probably – and hopefully – be enough to scare the seizures away!
Yesterday I wrote about how much Joshua enjoys his baths, but they are also an activity to be hyper-aware of and never to be taken too lightly. Joshua enjoyed his bath last night, lazing back and stretching out in the warm water. he decided he had had enough, possibly because he felt different, but he knelt up onto his knees, which is the way that he gets out. So I got his towel ready but then I saw his eyes change : the pupils enlarged and his eyes stared ahead, and I knew that a seizure was on its way. So I immediately removed the plug in the bath to release the water, and decided that there was not time to get him out safely as he would not be able to stand. Sure enough his limbs stiffened and he sat back down, while the seizure took over his body. I reached down and ensured his head was safe and above water, as he moved more into a lying position. We stayed like this for a couple of minutes, by which time the water had drained, then he turned to face me witha smile of relief as it was passing.
He was able to get back onto his knees, with some encouragement, and I helped him to stand – it was a very wobbly standing position but vertical enough that I could lift him over the side of the bath. He looked rather dazed as I toweled him dry, but we managed to walk slowly to his bedroom. We sat on his bed waiting to see if there were any more in the cluster or if that was it over. Nothing more came but clearly his body was exhausted, as he curled up on his bed, but his eyes remained open and staring, rather than relaxing into sleep. We lay together like this for some time, wanting to be sure there were no more seizures to follow and eventually he closed his eyes and I crept out.
Ideally he would have slept it off but he was awake and standing at the top of the stairs later and so we both had a restless night, as he did not seem able to relax into a proper sleep. I sneaked out of his room at 4 am once I heard him snoring, so I expect him to be tired again at school today; I will leave him in bed this morning as late as I dare and we will just have to see what the day ahead brings.
Joshua does not like showers : he does not mind them once he is in them but it is a struggle to get him into a shower, which is a shame as is ensuite bathroom at respite only has a shower in it and he prefers a bath. The one bath that they do have is inaccessible for him and so they began a familiarization technique with him. Everytime that he went in the bathroom, to be changed or to brush his teeth, the shower would be turned on to get him familiar with the noise and the water spray, and the staff would put their hands under the water spray too. Joshua is happy enough for the shower to be turned on but he still objects when they suggest that he might like to shower. At home we would bundle him in, knowing that he would like it well enough once he was in, but Joshua is an adult, with free will and if he refuses something, it will not be pushed.
So when Joshua is in respite, he has a stand up wash instead of a bath or shower, and of course he comes to no harm over the course of a weekend. So last night , when I got home from work, I was greeted with hugs, kisses and thumbs ups showing me that he was happy to be back home. As soon as Yorkshire Grandma left, Joshua led the way upstairs to the bathroom, where he turned the taps on. I had to insert the plug but he knew what he wanted and it was clear that he had missed his bath, as well as his Mum. As it was running, and while he was still half dressed, he was lifting his leg up to climb into the bubbly water. He loves to stretch out and relax in the warm water and he was even willing for me to wash his hair, it was a fair price for him to enjoy his bath. He lay back and relaxed for at least half an hour, luxuriating in the experience that he had missed. He knelt up on his knees when he had had enough wallowing, holding his hand out for me to help him to stand up. I wrap him in his towel and he puts his hands around my neck and I swing him round and out of the bath. So he was in his pyjamas around 7 pm last night, all warm , clean and contented. He loves his bath-time ritual and it is an important part of his homecoming too, so all is well.
I am often asked if Joshua has friends of his own age, and while he is sociable and enjoys the company of people, he does not have friends as such who he sees regularly and who he relates to particularly well. There are young people at school who he is more fond of than others, peers that he gravitates towards, but he is most friendly with the staff, he has certain teaching assistants and teachers who he will seek out, rush up to and give one of his bear hugs to, they are left in no doubt as to who they are. It would be lovely if he had the same bond with one or two of his peers, but that has not really happened as he has got older. There have not been equal balances of give and take : over the years he has attracted girls who have wanted to mother him and take care of him, and he has happily allowed them to do that. He has warmed to them but it has not really been reciprocal, he has only returned their attention with hugs and smiles.
A true friendship, in my experience, is one of give and take and that balance can shift over time, but always remains in balance. Your best friends know what you need instinctively, without having to ask you and sometimes that can mean just being quietly there in the background. Just due to his disabilities, Joshua is inevitably more of a ‘taker’ but he gives back in the best ways that he knows and has the ability to make people feel loved. Communication might be key to friendship and being non verbal might be holding Joshua back from making good friends, as he cannot offer verbal support or encouragement, and he does not respond to tears with a reassuring hug. But that does not mean that he is unfeeling or uncaring. Rather than offering traditional comfort when someone he cares about is upset, he might well employ his sense of humour as a distraction technique, to try to lift the mood.
When he first stayed at respite in the spring, he was the only client they had staying there while he underwent transition, but now they are busier with more clients. I would love to think that Joshua could build a rapport with the other residents, so that they can share and enjoy activities together and that would be another valuable aspect of respite, if such relationships could develop out of sharing the same weekends together. But in the meantime, I cannot wait to see my son back home tonight as I have missed all those hugs and smiles.
While Joshua’s is away in respite, I speculate what he might be doing all the time . Unusually I called yesterday morning to see what kind of night he had had after his seizures – we were about to be 2.5 hours away and I didn’t want to go away knowing he was still unwell. But I was greeted with the news at 9 am that he was still fast asleep, and had had no disturbances through the night and I’m certain that a lie in was just what he needed. So I was happy with that update and we set off, as planned, to Mum’s house to do some garage clearing – which is something that we could not begin to tackle with Joshua being with us.
We had a lovely Thai meal out with my mother in law, sisters in law and husband last night as it would have been my father in laws birthday . We toasted him in fine style. Just before we went into the restaurant I read an email from respite telling me that Joshua had enjoyed a trip out with another client and that he had enjoyed a roast dinner for his tea. I was delighted to hear that he had had a fun – as he wouldn’t have rated ours very highly . I made my usual call after our meal and was asked if I had liked the photographs, which I had not seen. So once off then phone, where I learnt he was tucked up asleep, I scrolled down my emails. There beaming out of the screen was my very happy son, sitting at the dining table which he rarely does, tucking into a big plate of food and it captured his mood and relaxed demeanour better than any words could ever do. I am so grateful that they chose to share those images. I hope that he goes onto have more fun today 💕