Good Intentions

I keep seeing on social media how others are using their creativity during this enforced lockdown : musicians are performing to entertain us, people are learning new skills and so many talented individuals are making valuable masks and gowns for the NHS. We cannot boast anything quite as generous or creative in our household. Most of my energy and imagination is absorbed by taking care of Joshua and in keeping him stimulated and interested. This week we were discussing how we could create a new environment for him as he is beginning to tire of the delights of his much-loved home and we were regretting selling our old motorhome, as this would have been a fun playground. We have been blessed with good weather these last few weeks but Joshua is not really an outdoorsy-type, so it can be a struggle to keep him outside, so I tend to take food and the dogs with us to keep him on the rug with me.

We decided to erect our tent as far away from the house as possible – it was last used for the Isle of Wight festival! We wanted to create a new destination for him and I have been calling it our ‘canvas cafe’ as that is one of the activities that he misses most. He was reluctant as I took him by the hand and led him outside after lunch, on the east coast we always have had a bracing breeze off the North Sea, despite the sunshine. He even told me ‘Don’t mess’ as I led him across the grass, trying to get him excited, or at least curious, about the red canvas structure that had appeared since he was last in the field, but if he was excited, he hid it very well.

It was a struggle to get him into the tent, as he had to crawl inside, so I removed his boots and splints in the outer area, then wriggled/dragged him into the cosier sleeping area where we had already laid out a mattress, quilt and cushions to make it more inviting. He was suspicious at first, scowling at me, but he warmed to it and yesterday we spent two hours in there together this afternoon : playing musical instruments, looking through books, eating Jaffa cakes and dozing, before we turned to YouTube on my phone for some music. It was a different, fun afternoon, when so many have been the same lately, and  we both enjoyed the new addition to our pretty limited repertoire. I have been trying to mix up the days more this week  but essentially the activities are the same, just in a different order to keep Joshua guessing.

It is challenging to entertain Joshua, without the option of going out, and sadly he lacks the capacity to amuse himself. We enjoy playing on his keyboard and tambourine in the lounge, but he will not go in there on his own. He slams the door continuously when he wants me to go with him to play, and try as I might, when I am busy cooking, which is his preferred time it seems, he will not be persuaded to go in there without me. So Joshua, from the moment he wakes up, is like my shadow.  He should have been at his respite provision this weekend, but we continue to self-isolate for his protection. So even though he would be delighted by the change of scene and faces I am sure , and I would welcome the break too, we have decided to keep him with us at home, for the second month in a row now.

Staying safe is our priority for the foreseeable future and with the tent now as an additional venue,  we will have some new entertainment options and over time, hopefully we will develop better ways to get in and out of it more easily.

 

 

Our New Reality

Lockdown is a real test for all of us as it challenges the way in which we are used to living . Our freedoms are truly curtailed and even though we know why it is all necessary – the daily death tolls are a sobering enough reminder – we are having to re-think how we live. We can no longer be as spontaneous as we once were as we have to plan our rare trips to the shops, plan our meals to minimise waste, make a concerted effort to stay in touch with those we care about and work with and even plan how we are going to use our daily exercise time. I wonder to what extent, when this is all over, which elements of this new life we will maintain and how much we will slide back into our old ways?

But I would like you to spare a thought for what it is like to have a learning disability, so that you cannot understand this rapid and dramatic change of lifestyle that is all you have ever known all of your life: One day you are in school, with your friends and the staff who you love being with and you come home to Yorkshire Grandma who has your evening meal ready, then the next day you no longer go to school, but you spend everyday at home with your parents and Yorkshire Grandma has disappeared from your life, but you do not know why. You have never seen so much of Mum and Dad, who rarely leave the house nowadays either, in fact they are the only people you have seen, in person, for a month now. Mum and Dad spend time sitting looking  at or talking to screens, but if you slam doors loudly enough, they will come to see you. You may need your favourite DVD re-starting as that concert has played through once already or to read your familiar books, but day after day, even they start to lose their shine.

The highlights of your weekends are two sociable treats : pushing a trolley around Tesco and lunch in a cafe, or Donalds if you are really lucky. But suddenly, these ‘trips’ out no longer take place. You get excited when you put your splints and boots on, only to be disappointed : you are either bundled into a wheelchair for a walk up the lane with the dogs , which was fun on the first few days but is now getting to be tiresome. Or if you are lucky, you are taken out in the car, which gives you hope that this might be a longed for ‘trip’! But even car trips have taken on a new meaning as you are never allowed out at any final destination and they seem only to entail picking up shopping, with maybe a detour around some country lanes, then straight back home, after which you are made to wash your hands like never before.

We are fortunate that Joshua is pretty adaptable, he does not become too distressed by a change in routine, despite his frustrations, but he has no option but to accept his new reality. I know he misses social interaction more than anything. But for now, we will have to suffice. I never fail to be delighted by his beaming smile each morning when he wakes, even though he must be thinking ‘Oh no, not you again!’. I try not to think too far ahead, to worry about the uncertainty of the future, but instead to focus on each day at a time and simply do the best we can. The priority for now has to be keeping each other safe and being grateful for what we have.

Moving in the Right Direction

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.

Sleep the best medicine

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.

Tricky Thursday

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!

Fitful Night

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.

Bathtime Bliss

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.

Friendships

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.

Picture paints 1000 words

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 💕

Fit for Fun

I had a sense yesterday when Joshua was reluctant to wake up, that he was not feeling on his best form. He took longer than usual to come around and give me one of his grins, and he was keen to snuggle back down again after he had eaten his porridge. I hoped that it was the aftermath of his Thursday night seizure and so I let him stay in bed as late as I dare, yet still allowing enough time to get him dressed. I needed to double-dress him yesterday as he was to wear his onesie for Children In Need. As they are so warm and so inconvenient for personal care, I always dress him in another layer underneath so that he can wear joggers once the fun of fancy dress has worn off. I am not totally convinced that Joshua even realised that he was going to school dressed in grey and black stripes, with ears on his hood.

I kept my mobile by my side all day , half-expecting a call to say that more seizures had struck him down, but that call did not come until after 4.30, from his respite provision, so he had held on as long as he could. They were still booking him in , when he had seizures for five minutes, and they got to the stage of retrieving his emergency medicine, when they stopped on their own. Once Joshua was settled on the settee, looking ready to sleep it all off, they called me at home to report what had happened. I was relieved of course that they had stopped on their own, within the confines of the care plan, and of course I hope that is the end of them for this weekend.

The phone call left me on tenterhooks all evening, jumping up and assuming the worst when my mother in law called later. It is very hard to stay away once you know Joshua is unwell, my natural instinct was to go to him, to be there. But he is surrounded by caring and attentive people at respite and they did all the right things, given that these were the first seizures of Joshua’s that they had witnessed in the  7 months that he has been attending there. They are a frightening sight for the first time, I never underestimate that, and that will be one of the longest 5 minutes that they experience this weekend. I really hope that they are not challenged by more seizures today, that he has slept well and reset his brain, so that he can have some fun and games today, without feeling too washed out.