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 💕
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.
I often speculate, what might Joshua have been like if he had not experienced his brain damage, what might he have done with his life so far? I like to think that his personality would have been the same as it is now : that he would have been a loving son with a cheeky spirit and sense of humour. I think he would have been popular with his friends, sociable and I like to think that he would have had a kind heart. I can see enough of these traits in the young man that he has already become .
But I like to think of him being he would have been more independent than he is able to be now. He should be making his own choices and taking care of himself, rather than needing his parents to look after his needs. I like to think that he might have inherited my stubborn personality – there is already more than a hint of that trait when he digs his boots in and refuses to move.
But I wonder what he might have enjoyed studying and what career path he might have chosen. If everything had been as it should have been, he would have been enjoying his first term of university now and so he would probably have moved out of home . I find that hard to visualise, Joshua living away and not seeing him everyday but communicating by text or email instead, as many of his peers are doing.
It is only ideal curiosity, as I know, this independent and academic life is not in Joshua’s future plan. But I have always stated that I want Joshua to be safe and to be happy, and anything else is a bonus. By the way he runs to the school taxi with a big grin on his face, I am pretty sure that he is happy at school. Joshua has achieved so much more already than was predicted for him and so who knows what his future will hold and how much more he will go on to achieve. Nobody knows what is around anyone’s corner and nothing is guaranteed, so we look forward to seeing what Joshua’s future will bring him, and us too. Whatever lies ahead, he will always have his parents shouting him on, encouraging him from the sidelines.
Since we have lived together, my husband and I have always had at least one dog in the family and at most, for a short while we had as many as five dogs living with us. So our current complement of four small dogs is not unheard of, though it was unplanned. The ‘puppies’ will be 6 months old next week and rather than feeling like hard work, as they have certainly added to the chaos in our lives, they have been such a blessing and a great distraction over the last six months.
I love to watch them interact with Joshua: how do animals so young know how to react to him? it must be innate or passed on by their gentle parents. They love to burst into his bedroom in the morning and jump on his bed, their tails wagging so hard showing how delighted they are to see him. Joshua laughs as he batts them away, from off his head as they want to lick the sleep from his eyes. Once he manages to sit up, he has a daily routine : he pushes their heads back to stretch their necks, and he pulls on their large ears. This appears like yoga for dogs, and they push themselves forwards to try to be the first to receive this treatment. I then need to shut them out of his bedroom, while he eats his breakfast – porridge or Weetabix – as they would like to share that treat too, waiting for some spillage to clear up. They have to stay away while he gets dressed too as they love to grab a sock and run off wit it, or play tug of war with it, further delaying the dressing process. Everything is fun for a puppy and Joshua shares their sense of fun.
They similarly pile on top of him when he gets home from school too, clambering over him, offering him welcome home kisses, as though they have really missed him. They bring him toys to play with and to throw or tug, and they enjoy a happy game together. Joshua has never known a home without dogs in it and I am certain that he adores them, they certainly seem to idolise him. Once the games are over, he will often have one pup on his knee and another on the back of the settee, resting a paw on his shoulder, they just want to get close to him and he is happy to let them.
I am delighted that as Joshua has inherited his parents’ love of dogs, the pups have inherited their parents love of Joshua.
Joshua has a lot of odd socks, our washing machine often hides one of the matching set, so he has a bag full of lonely socks waiting for their partners to turn up. So that really came in handy yesterday as he was invited to go to school wearing odd socks. The reason was to mark Anti Bullying Week by celebrating difference in each other; being different is something to celebrate and share, rather than being something to hide and to be potentially bullied about. So I dressed Joshua in one stripey and one plain sock – a gesture that he will have been oblivious about but it meant that we took part and made a stand.
At our Special School I am not aware of a culture of bullying , as everyone there is inevitably different from everyone else and so it will be a different environment to that found at mainstream school, where there is a much greater need to ‘fit in’. Nonetheless, it is a great principle to encourage for life beyond school too, where those with special needs may well encounter some prejudice or bullying as they will be in a less protected environment. I am relieved to say that I was never bullied at school but I know with social media now, it has become more intense for many young people.
Along with the odd socks day, school are encouraging and recognising random, small acts of kindness across the school. I strongly believe that there needs to be more kindness in the world and I like to think that I am a kind person, who encourages Joshua to be the same, as far as he is able. I try to empathise with how others might be feeling and like to surprise them with unexpected treats, such as baking, flowers or silly small gifts. Joshua does not have the capacity to make these gestures but he can, and does, offer his hugs and smiles in an effort to cheer someone up and they often can leave someone feeling better than they did. Kindness does not need to be big gestures, just something small is enough to show someone that you were thinking of them, without an occasion like a birthday. In fact I find, it is often the random timing that intensifies the gesture and makes it feel so much more special.
So I fully support school for encouraging acts of kindness and for celebrating difference in each other too, both are great principles to teach our children and will stand them in good stead for the future.