Pulling Together

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Bliss is hard work

It’s been a while since my last article and my life has changed completely. I have moved house, acquired a wife and step-son, and have very little time to keep up with public affairs.

At another level, nothing has changed. Covid remains an ongoing threat, and the locked down life continues although the name changes regularly. Life remains very hard, only now I cannot go home to rest. Now the chaos is part of my home. Yet I’m glad to be where I am, providing support, but knowing things could easily fall apart.

A new marriage should be blissful, but ours is fraught. With my wife’s disabled son who needs constant supervision all his waking hours, and can’t even be left while we use the toilet or have something to drink, there really is no let-up. He can be rewarding when we see what he can do, but every new ability brings new hazards as he learns to defeat safety precautions used to protect him.

On Sunday he returned to us after a couple of days with his father. Things went wrong before he got to our front door. Our next-door neighbours were moving things from their car into their house, which meant they were out and about and their door was unlocked. Reuban decided to explore their house, and had to be dragged back from the door.

That incensed him. He does not take kindly to frustration. Before he reached our front door he emitted his warning squeal and we knew we were in for a full-scale domestic disaster. He ran into the house and began to attack the furniture and his toys, overturning the former and throwing the latter. We asked what was wrong. He turned and ran out of the house and ran straight to the neighbours’ house. With his parents in hot pursuit he opened their door and entered their property. My wife ran in after him, calling out and eventually caught up with him on the stairs dragging him out, while apologising profusely. Meanwhile, the woman next door apologised for the state of her house, as if having two small children was something to be ashamed of. The intrusion had woken the baby, which was another source of distress.

Now he was more indignant, so he ran towards our door, tripped, got up angrier than ever and headed into the house throwing himself at everything he could see. My wife and her ex dragged him off to his bedroom while I sat outside for around an hour while they tried to sing to him and calm him. I’m told his father held him down to stop him injuring himself or them while that was going on.

Social Services tell us there are ethical issues around restraining him, that it is a breach of his Human Rights to confine or constrain him, yet if not restrained at a time like that he would be likely to injure himself, injure others, or damage property and infrastructure on which his well-being depends. Those are ethical issues too. A six-year-old child out of control with no fear of consequences is a force to be reckoned with. It is quite unlike a toddler’s tantrum, because the child is so much more capable and powerful. Put quite simply, he lacks capacity to protect himself or others and becomes a real danger.

After the incident the three of us sat down to reflect. How long will it be before he is stronger than us, and we can no longer protect him or ourselves from his rage? Because we are in Tier 3, even entering other people’s houses would be considered dangerous irrespective of any damage done to the house or its occupants, but his behaviour at times can be physically dangerous as well as the potential danger of spreading a virus no one involved probably has.

Living with my step-son is a matter of permanent arousal. We never know when danger will arise as he moves round the house, which he does constantly as he looks for something new to do. He simply craves stimulation and new experiences, while following entrenched habits in search of them. I need to strengthen my study door because yesterday he tried to break it down and it was clear it could not stand a sustained attack as it creaked and began to bend under his exertions. There is important equipment in my study that could not survive a child pulling it apart or throwing it around, including the server from which you are reading this. I also use it as a temporary store for dangerous items which must be kept out of his way for his own safety, although there is no lack of hazards built into the typical house. The kitchen-diner is open plan, so he cannot be kept out, and trying to keep out a child who has not yet acquired any real sense of right and wrong but is capable of breaking parts of the house to gain access to places he shouldn’t go is a real challenge.

Nor do we know what might trigger one of his rages, though we obviously try to anticipate that and avoid frustrating him if we can discern his intentions. Yesterday he fell over on his face as we were preparing breakfast. That hurt him and of course set off a tantrum. My wife held him and tried to soothe him, but with a bump on his forehead there was no possibility of sending him to school. Instead, we had to contact a doctor, which these days means telephone conversations and photographs, since doctors will not see people in person at present. It was mid morning before the doctor gave him the all clear and we then took him out in the car, as I had a blood test several miles away and we wanted to get him out and about. The test took longer than I anticipated, however, so by the time I came out it was too late to go anywhere interesting. He was bored sitting in the car while I went into the surgery, and then we just drove home again, so that probably wasn't to his liking. Then I found we'd left a tub of medical skin cream on his bedroom floor, so I picked it up and put it in the cupboard while talking to him calmly. He squealed and began to become agitated. Evidently he wanted to play with the tub and its contents. When Mel came in he threw himself at her and began to kick and shake her violently. She managed to lift him into his padded cot-bed and shut the doors, singing to him and making soothing sounds while he threw himself at the padded sides. The bed will need changing soon, as he can now reach the top and will soon be able to climb out of it, with the possibility of a fall from height, but Social Services are against a higher padded bed because it is “unethical” to contain a child. Without it we know he would injure himself or cause a dangerous accident in the middle of the night, either because he does not understand the consequences of his constant interference with equipment or because something has failed to meet his wishes and he has lost his temper. He loves turning knobs and operating switches. Since we have a gas hob that means an explosion risk should he wake in the night and make an unattended visit to the kitchen because he cannot be kept safely in his room while we are asleep.

I do not want to paint too gloomy a picture of the lad. Although he functions for most purposes like a large strong toddler, he is bright and has great potential if we can keep him alive, despite his lack of capacity to stay out of danger and his strength in resisting us. He is doing well at school. He is adventurous and aspirational in his way. On Tuesday I went to collect him from the bus, and he dragged me off in the opposite direction to a local park he has discovered. He likes that park and having been taken there once in his wheelchair memorised its location and has twice taken us there on foot. He has a wheelchair not because he can’t walk but because he won’t ecessarily walk where he needs to go and it’s difficult to control where we finish up if he has an appointment. He can also walk away from home until he drops and then expect to be carried back, which is difficult as he’s too heavy to carry more than a few tens of yards, assuming he doesn't wriggle, kick or bite the person carrying him, which he can also do when he’s tired. I can identify with that. I like to go cycling to see how far I can get and aim for places 60 or 70 miles home. I too sometimes run out of steam on the way home and have difficulty making it back.

A daft system

My step-son had another medical appointment yesterday, for his annual ’flu vaccination, which in his case is a nasal spray rather than an injection. The appointment was at three. We arrived a few minutes early. We were not allowed in. Having been to my own doctor’s surgery in the morning, signed in and sat in the sparsely-furnished waiting room in the usual way, I was surprised to find patients at this surgery were expected to wait outside the door in the December cold and were only admitted to the building when the practitioner was ready to see them. This included an elderly man in a wheelchair who was obviuously frail as well as our own child with special needs who can understand neither social distancing nor queueing. And so we waited, and waited to be called in. Eventually someone came out and explained that waiting to be called did not mean waiting outside the door to be called, but waiting nearby with a mobile phone, and that no one would be called in unless they had first been spoken to on the phone to establish they were outside.

So we were at a health facility which exposed sick people to the risk of hypothermia while insisting they used technology they might not have with them or even own in order to be admitted for a pre-booked appointment, because staff were unwilling to come to the door and call their name unless they had already spoken to them on the phone to confirm their presence.

Who devised that?

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