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Day 4

Yesterday it was nice to get a call from Littl’un’s teacher, just checking in with us to see how we are all doing. “Yes”, said Littl’un after I came off the phone, “Miss Sam is always nice. Nicey, nicey, nice. That’s what she is. Even when other people are not nice. And when I say other people, Jac,” he looked over the top of his glasses and grinned, “I actually mean me.” We’ve been listening to the Thirteen Storey Treehouse stories again (highly recommended), and “When I say …, I actually mean … “comes from that. Littl’un delivers the lines so well. He makes us laugh every day. As well as the tearing the hair out, of course.

The school, which is a special school, is closed from today until further notice.There are too many staff absent to be able to keep the children safe.

​I found myself asking Miss Sam if any of Littl’un’s support assistants were off sick this week. I’m sure she’s not really allowed to tell me, and it was cheeky to ask, but she was able to reassure me that they were all at work. Littl’un is on two to one support at school, and follows a bespoke timetable based on his sensory and other needs, and different support assistants are assigned to him depending on what he’s doing. He’s only been at the school since November, and it’s part-time, but it’s really starting to work well as he’s settled right in, and the staff now know and are starting to understand his complex needs. Miss Sam said that she’ll be working from home, and will email me some suggested activities that might be fun for us to do together, as well as some web links to games with educational value. She really gets that kids like Littl’un simply refuse to do things like worksheets, and need to be carefully engaged in the right way and at the right time to be able to learn. She said she’ll be keeping in touch over the coming weeks, and if we need anything – even if it’s just a chat – to give her a call. It feels good to be supported, and I continue to be struck by the difference in our experience of special and mainstream schools when it comes to nurture and supporting the whole family.​

We’re not too worried about Littl’un missing education at the moment. He’s only seven – and we can do lots of stories and other things at home.

The most important thing is that we get outside and do some vigorous exercise at least once every day. He has a lot of energy to burn off! But it is a real shame that he is missing out on the input of these lovely people who are doing such great work with him on identifying and regulating his feelings, and helping him to learn to socialise with other children. They say it takes a village to raise a child – it certainly takes a team.​​

We are blessed with good friends who support us, and we are sometimes overwhelmed by kindness from those who understand how challenging and isolating life can be for kinship care families. Usually other kinship carers.

This morning I was contacted by our friend Jess Thom, a member of our Tourettes family (our grown-up son, Paddy, has Tourettes “Plus”), to say that as she’d noticed from Facebook that we were all at home, she’d be sending Littl’un a Tourettes hero activity pack in the post. So thoughtful.​

For dinner tonight we had Spaghetti Bolognese. Littl’un eats like a bird, and I cooked him simple buttered spaghetti, which is recommended by the Open Nest as comfort food for children with early-life trauma. It went down a storm. He had two bowlfuls: “Jac, we haven’t had buttered spaghetti for ages. Can we have it more often please?” I didn’t have the heart to tell him that there’s no pasta in the shops at the moment. Maybe we’ll find some next week.​

Day 5

Today’s been a very mixed bag, and tonight I’m really enjoying my glass of wine!

Today was an early start. Littl’un woke up around 5am in a very angry mood, due to a wet bed. Other parents and carers of children experiencing early life trauma will understand that anger often hides very powerful and toxic feelings of fear or shame. The antidote is always love and lots of calm – but it doesn’t always work. Today was one of those days, and our bathroom took the brunt of the storm until it burnt itself out.

Big D always does the early shift. I am very lucky and start most days with a lovely cup of tea in bed, and time to think about the day ahead. However this morning required a “tag team”.

​When Littl’un blows, he’s a wild ball of energy, an explosive mix of offence and defence – hitting, kicking, throwing, yelling, swearing and more. Big D and I have been married for over 30 years and are pretty good at reading when it’s time to step in and take over for a while. Happily, Littl’un’s meltdowns, triggered by any one of a number of sensory, emotional and social factors (he is to be assessed for autism) are less frequent than they used to be and don’t last as long. So it wasn’t too long before he was back in the big bed with me, cuddling in. And all this before 6 am.

Thank goodness the rest of the day was less intense.​

At lunchtime we went to the (empty) little play area next to Big D’s cricket club for some fresh air and exercise. Littl’un refused to wear gloves when he was using the play equipment, so I had to use up quite a bit of anti-bac mousse afterwards.

​It was good to see him having fun spinning, sliding and swinging. But I think it also brought it home to us that we really can’t do socializing with other people safely at all, as he is too easily dysregulated and oppositional. There was lots of deliberate touching of the face, sticking his fingers up his nose etc. Under other circumstances it might have had a funny side. Especially when he was pulling his mouth into the most hideous gurning looks. They would have won competitions. I’d done ham and cheese sandwiches and hard boiled eggs, which were still warm, for our lunch – and It felt like a lovely picnic, but for the reasons why we were there.​

This evening I found myself taking stock of what has changed for us over the last week. Big D is working from home – and is working longer hours than usual, as local authority funding and finances all need to be redone (probably again and again).He considers himself very fortunate indeed not to be on the front line.

For me, as before my life is focussed on Littl’un – but with no practical support except for Big D, and no meeting up with friends, which is so important to keep me going. I am very lucky to have a lot of support online from other kinship carers, and friends who are adopters and/or parents of children with additional needs. Isolation is very much a fact of life for many of us. For kinship carers, when we agree to bring up someone else’s child, life changes suddenly and forever. Friends and family members, many of whom say in the early days that they will support you, gradually distance themselves and disappear. So we seek out people who understand, who live the same life we do – and thanks to the wonders of Facebook, that’s online. We kinship carers tend not to go out in the evenings!​

Sadly, the biggest changes have been for Littl’un. All of the following cancelled for the foreseeable: School, therapy, weekly visits to his Mammy (we are doing Facetime twice weekly instead), visits to his sister and grandparents, swimming, and seeing friends.

This week’s Care Team meeting has been postponed indefinitely. So it’s just him and us. Poor wee soul! This morning he said that if he didn’t get to see any friends soon, he was “going to kick God right up the butt”. This resulted in another interesting and quite surreal chat about why this has nothing to do with God, and he’s changed his mind. Now he’s going to kick Boris Johnson up the butt – even though it’s not his fault either – but maybe it’s not such a bad idea!​

Day 9

Well I haven’t blogged for a few of days. Everything is moving quickly at national level with daily announcements about the coronavirus. ​

On Friday I was supposed to have an appointment in Outpatients with the consultant who looks after me because of Crohn’s Disease, but on Thursday his PA had called me to arrange a telephone consultation instead. We had a good chat, and I told him I’d decided not to have my next infusion of infliximab at the beginning of April, as I didn’t want to remain immunosuppressed right over the summer. I felt I had enough risks with asthma and frequent chest infections. He said it was a tough choice, as my Crohn’s was severe, but he supported me. We said we’d see how it goes. I’m under no illusions that in a couple of months time I’ll not get to talk to a doctor, never mind get any treatment. He said he thought I should change to a different drug in any case, as I am having lots of side effects – mostly respiratory difficulties – and he’d look into it and will see me in four months. I have no doubt that in four months he’ll be working at the coalface with virus-stricken patients. We’ll see. It’s all quite scary, as previous ways of thinking are changed almost overnight.

This weekend was Mother’s Day. Probably the weirdest Mother’s Day ever.

I’d sent my mother flowers last week, and Darrell sent his mother a card with cash in it so she can buy something she fancies. Provided that the shops are open of course. We went to see Littl’un’s Mammy – who agreed to sit behind a window. In the end, she wanted a hug – as we were all anticipating lockdown soon – so she’d sprayed bin bags and wrapped herself in them, wore rubber gloves and a mask, and, popping a bin bag onto Littl’un too, gave him a tight squeeze. It was both lovely and sad at the same time. We are going to do face-time twice a week.

Afterwards, we went around to see my Mam and Dad, who live in the next village, and as it was sunny. I sat in their garden in a camping chair, with my flask of tea, as they sat in their conservatory behind glass – with the door open so we could hear each other when we were chatting. Big D and Littl’un went to the park to play footie. Keeping his distance is not Littl’un’s forte. Especially when he knows there are “Bugles” in the house (his favourite crisps). My big brother and his wife turned up. It was lovely to see them. They both work for HMRC (this week my sister-in-law has started working on the coronavirus hotline), and my brother – who stood in the garden – a lot further away than the recommended 2 metres – reported that he’d now had the first two cases of coronavirus diagnosed in his office. He said that there was also a lot of bad feeling because a couple of obese workers had been sent home, as morbid obesity is on the list of conditions that make people vulnerable to the virus. Life is getting very complicated in all kinds of surprising ways. ​

They agreed to have a whisky from my Dad – who put the filled glasses on the step, and, with reluctance, stepped back so they could collect them. After a brief chat, we all stood up to go. Then Dad said “I’ll have my good crystal glasses back please”.”Er, no” said my brother.” They may be contaminated. There’s got to be some advantages to being a key worker. I’m taking them with me. And he did.” ​

Day 10

The Prime Minister’s announcement on Monday night caused a real fuss in this family.​​

He didn’t mention older or vulnerable people at all, and because the speech was badged as an “address to the nation”, our elderly parents thought he was talking to them, and were delighted that, having previously been told they’d be getting a letter telling them to stay home for 12 weeks, they were now going to be able to go out for exercise every day and go shopping for food (usually perusal, in small local shops, of what they might fancy for lunch as part of a morning walk out). And just for three weeks. Er, no!

By close of play on Monday night, I had a headache with trying to convince elderly parents that they had to stay home the next day.

Big D’s Mum said of course they could go shopping, as the shops had brought in special shopping times for the elderly. It’s strange that we’d anticipated most difficulties during this crisis being with Littl’un. Not so. Well, not so far. It’s the old rebels finding it hard to give up their freedoms that’s been one of the more challenging things so far.

So this morning this big question was – would the oldies stay at home? Well, surprise, surprise, they did. I had a call from my mother saying that they weren’t going out. As it was a nice day, they’d be staying in the garden and doing some clearing up from the winter. Excellent news.

Then I had a phone call from my aunt. She’d driven around to my Mam and Dad’s house to leave a late birthday present for Dad on the step. My aunt, being very onto things (she’s a retired primary school teacher – say no more!) had disinfected the box and left it in her hall for three days before bringing it down in a clean bin bag. She said she’d turned around the corner only to see my 84-year-old mother taking in the bins for all the neighbours after the bin men had been – dragging them by the handles. I was told there was then shouting … Amusingly the present was three cat ornaments for the garden with solar-operated eyes – the aim being to scare other cats out of the garden by ‘staring them out’, but now I’m half wondering whether or not my aunt has put hidden cameras in them so she can keep an eye on my mother’s shenanigans.​

Littl’un is doing amazingly well so far – but I’m a bit worried that he’s already spending too much time lazily surfing on YouTube while I am sorting out food cupboards, bedding for any enforced isolation etc – and keeping all three of us fed during the day.

This morning’s questions, while he was watching the truly awful, but relatively harmless ‘Ryan’s Toy mobile’ on YouTube were: “Is Lego land Japan closed because of the virus?” Er, yes. “Is Lego land in this country closed?” Er, yes. And then the fabulous “You can keep a long way apart if there is just one person. And I have lots of pennies in my money box. Would a theme park open for just one person, Jac?”

This morning we’ve been doing old-style fun and play. I’ve been parcelling Littl’un up in a box and posting him to various places – zoos, museums, and even to the Queen, whose corgis are unwell at the moment with corona virus. But we had to stop because my Queen voice was so realistic it totally freaked him out. “I want to go back to Jac now” said. And once he was in a cuddle he said “I don’t like the Queen voice Jac. I just want it to be you.” Fairy snuff. But I’m bearing it in mind for my future voice-over career when all this is over. Sarah Millican, and now The Queen. Now that’s versatile ..​​

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