12 minute read
Littl’un attends a special school part-time, and his teacher is the lovely Miss Sam. Since the beginning of lockdown she’s rung us every week to see how we are all doing – except for the three weeks she was down with COVID 19.
The first time she rang, Littl’un refused to speak to her. He said he was surprised that she’d got COVID “because she is usually really good at washing her hands.” He was very disappointed, so we had to have a bit of a chat about that. This week, he’s asking me how long it is until Friday, as he’s very keen to talk to her about anything and everything.
Last week Miss Sam did a sterling job listening to him talk for almost an hour about all the dreadful characters in the computer game Five Nights At Freddy’s. Littl’un isn’t allowed to play the computer game as it’s a 12, but that doesn’t stop him having a morbid fascination with it. His Mammy has bought him action figures of all the characters, which has fed his interest, but at least it makes a change from Thomas the Tank Engine. Anyway, last week I left Littl’un chatting on the phone with Miss Sam in the camper van about all things Five Nights At Freddy’s. I had the advantage of knowing (a) how long his monologues can last; and (b) how determined he can be to hang on to your attention; so I was confident that had time for a cuppa with feet up for at least ten minutes. I did. It was lovely.
When I got back Littl’un was still in full flow, holding his action figures up to ensure descriptive accuracy. When she finally managed to get away, poor Miss Sam was held to a promise to ring him again early this week. True to her word, she rang again on Monday.
I was in the bath, and Littl’un was about to go for a poo. But that didn’t stop him wanting to chat. Oh no – he insisted on taking the phone with him: “No, Miss Sam. I won’t be long and will just take you with me”. Thank goodness it wasn’t a video call – and I do hope his descriptive powers weren’t used for the obvious. I could hear laughing from the bath as they were talking breakfasts and she asked him if he ever had bananas with his chocolate spread on toast – did he like bananas? And he responded that of course he did because he was a little monkey. You can tell that she really likes him.
When Littl’un brought the phone back to me he said she will be ringing back on Friday. I imagine she is wondering what on earth we’ll have in store for her then.
We’ve had a few difficult days this week, and Sunday in particular was awful.
That day we had everything from Littl’un throwing things downstairs and yelling and swearing in the street, to telling me that he is going to destroy all the lovely memories of me he has in his brain before he runs away. And much more besides. We think he’s been affected by Auntie Hazel’s death and all the talk about the funeral, and is also worried about me becoming ill and dying. We’ve decided to cut down on the amount of news he is able to view, and we’re also going to make some tweaks to our daily routine to try to deal with the regression in toileting. Other than that, it’s one day at a time, and lots of love and attention, as usual, and maybe a bit more of the fun. Which has been easy as the weather has been good. Today Big D took him down to the beach and they built a giant sandcastle, with moat and turrets. He was full of excitement to tell me all about it when they got home.
Last weekend there was a lot of paperwork to catch up on relating to things happening soon. More in the next blog.
But firstly, and most positively, there was all the correspondence I needed to do regarding the incredibly exciting news that this week our 25 year old son Paddy has set up as self-employed. This is an enormous leap forward, and I confess I have had happy tears. Paddy has complex neurological and psychiatric conditions, including an Autistic Spectrum Disorder, and has gone through some very tough times. He is our adopted son, which adds to the mix of issues for him. He doesn’t like us talking about him on social media, and particularly doesn’t like me posting photos, but this week I just had to tell family and friends all about his new chapter, as it’s such big and brilliant news.
For the last three years Paddy has been living independently up in the wilds with his crazy dog, and he’s doing ok, having really settled into life in the countryside. Of course, he doesn’t always eat properly and look after himself like he should, but in the grand scheme of things, he’s doing pretty well.
Last year he did some volunteering with the local wildlife trust, and then he did a few short courses in tree work. He said the hardest course he did was the day-long health and safety course. For others, this would have been by far the easiest course, but sitting in a classroom for a full day, with other people, trying to stay focused, was very stressful for him. He phoned me afterwards and said he nearly didn’t complete it. He’d had to keep going outside for air and a break, and the last two hours had been a blur, as he had had to focus on simply staying in the room. People have no idea really. This is the lad who, after a nasty car crash, allowed us to take him to A&E, got a quick triage, and then refused to stay to see a doctor as it involved sitting in a waiting room with other people.
So he seems to have found his niche. Big D and I are so proud of him. We used to say to each other, and to friends who understand, that it’s so hard these days for young lads with his kind of social difficulties.
In the past they would have found their place in a tight-knit community based around an industry, under the wing of an older fellow, who would train them, keep them on task, kick them up the backside when they needed it, and basically provide them with all kinds of what today we’d call strategies, to succeed at work. Social skills wouldn’t have been important. He would have been known as a “quiet lad” and just by standing at the end of the bar and sipping a pint he’d have been “one of the lads”. In today’s society and economy this kind of community is so rare. But I’m over the moon that Paddy’s found one for himself.
He loves the solitude up in the wilds. A job where he is on his own, with his dog, where he can work to his own timetable, is going to be perfect for him. We’ll still be helping him with organising his household stuff, and a family friend is going to be his accountant.
Last weekend Paddy came to see us, and his grandparents, in a “garden visit” to sort out some paperwork and pick up some essentials, and he was saying that in many ways he wished the lockdown would continue. He said he found last weekend’s influx of day trippers into the countryside really depressing, but mostly he thinks that people having more time to sit in their gardens thinking “those trees need pruning” would be good for business! That’s my boy!
Yesterday I mentioned that at the weekend I’d had a lot of paperwork to do to prepare for things happening this week.
One of the things I had to do was prepare for this afternoon’s meeting of Littl’un’s “care team” (basically, all the professionals involved with him, plus us), as today was the legally-required Child In Need Review. These titles are all very official, and don’t mean anything to ordinary people.
Littl’un is classed as a “Child In Need” because you have to be formally classed as something – being in one category or another – to have any involvement with children’s services. He has very high needs that weren’t identified or assessed properly by the local authority when he was Looked After.
The right supports were never put in place before we were granted the Special Guardianship Order (SGO). A Support Plan is a legal requirement, so we put in a formal complaint, which was upheld by an independent investigator. So we received a formal apology from the authority, and a letter outlining a plan of action, and ever since, he’s been a Child In Need, and will remain so until there is a proper SGO Support Plan put in place. We’re not holding our breath. Already it’s been over three years – it’s one of those “you couldn’t make it up” situations. As some involved with children’s services will attest, it can feel like being stuck in a Kafka novel?” A never-ending process, and as one thing Is agreed, another thing needs to be addressed. I won’t bore you with the details. Suffice to say I have a lot more wrinkles than I had five years ago.
Of course, this afternoon’s meeting took place online. As usual the date was given to us by children’s services the week before and there was no agenda circulated in advance.
The Chair – always a senior Social Worker – has an agenda, but it’s not shared. Having worked as a formal committee administrator in local government in a past life, I find the lack of transparency breathtaking. Also as usual, Littl’un’s social worker wanted to see Littl’un the day before the meeting – this time on video call – to check he is OK in line with her tick list (that, of course, we aren’t privy to). We do like her – she’s a very down to earth woman and knows he’s safe and happy with us, so treats us with a light touch. She didn’t get a very warm welcome from Littl’un when she called to speak with him. He doesn’t do transitions well, and was busy playing. It took quite a while, and me brokering the situation, to get him to engage. Nevertheless, it illustrated his level of difficulties.
The meeting was pretty surreal. The Chair said that we’d work on the basis that everything was “normal” (ie no COVID 19). Which suited her for getting through the process, but had no practical value whatsoever.
The Special Educational Needs team and CAMHS didn’t turn up, as per, so those of us present discussed Littl’un’s education, his animal-assisted therapy, his CAMHS assessment for ASD, his swimming, school, and respite for Big D and me, though of course none of this has been happening or progressing since 16th March. Child In Need is quite a good title in the current circumstances. I suppose it didn’t matter, as there’s nothing that can be done while we are shielding anyway. We’re simply here at home for the foreseeable. And we’re either managing or we’re not. There are some difficulties. But mostly we’re surprisingly ok actually. A life-threatening virus in the community certainly helps you get things into perspective.
Big D had rearranged a couple of his work commitments and taken Littl’un out so that I could participate in the meeting in peace and privacy.
It was a lovely sunny day and they’d had a brilliant time at the beach building a sandcastle and running in and out of the waves. When they got home, happy and covered in sand, Big D said: “We’ve had a great afternoon. How was yours? Any good?” then laughed “I thought not!”
We have a system for food deliveries, whereby Big D disinfects everything on a plastic trestle table next to our kitchen door, then we put frozen and chilled items in the fridge/freezer, and store the rest for 24-48 hours in big shopping bags in the garage.
This morning Littl’un and I discovered a flaw in the system. We were putting tins and packets away into the food cupboard, when we came across cereal bars, packets of pasta and some biscuits that had clearly been nibbled. And then there were the mouse droppings in the bottom of the shopping bag. Ah.
Living where we do in rural Northumberland, with a river less than a hundred meters away, we are quite used to visitations from mice and sometimes other country creatures, but this is a flaw in the system that we’ll have to correct. The nibbled food has had to be binned, and all the other tins and packets from this week’s shop had to be thoroughly washed. Littl’un enjoyed doing this, and, while standing on his little stool at the sink washing the tins, gleefully speculated on how we should dispose of the mice living in our garage. At times he has quite a gruesome imagination.
At lunchtime, Big D came downstairs from his office for his usual daily ten minute visit to the smallest room.
Littl’un and I were still having fun working in the kitchen, washing the floor. After a while, Big D came into the kitchen, ashen faced, and asked me to come and have a look into the loo. Braving the smell, I followed him into the WC. “The bowl is full of blood”, he said seriously “What do you think?” I am the household expert on all things poo-related, having Crohn’s Disease. We looked at each other. Then I saw the realization dawn across his face, and we both started laughing. “Or, of course, it could be all that beetroot I ate last night,” he said. Littl’un, hearing our laughter, came running to investigate thoroughly before the evidence was finally flushed away. So now we know all about beeturia, and a quick google of further information revealed the usefulness of eating beetroot to assess the functioning of your digestive system. It’s called “the beet test”. Every day’s a school day.
This afternoon I enjoyed the luxury of an hour on my own (I’d hoped for longer!), as Big D took Littl’un with him to drop off some essentials to a friend, and then they went to feed the ducks and swans at the nearby QEII Country Park.
The swans at QEII Park are particularly vicious. They aren’t at all afraid of people, and all the birds come flocking towards your car as soon as you arrive. A degree of skill is required to get out of the car and throw all the bread out before the birds either start pecking you or poo all over your car. The seagulls are particularly lethal, so it’s wise to be able to get a fair distance from your car before you start throwing the bread – but not so far that you can’t get back quickly when the swans start advancing. It’s an especially risky operation in the winter when the birds are hungry. I confess that when I’ve taken Littl’un in the past, we tend to time it before the car wash, so we can just sit in the car and throw the bread out of the car windows (or, more precisely, a small gap in the top before quickly putting up the window again). It is then like a scene from The Birds, with swans pecking at your window, and the smaller birds hovering above them, or walking up the bonnet to stare at you through the windscreen. The car wash afterwards is essential. I tend not to tell Big D when we’ve been because he goes around looking for scratches on the car.
This afternoon I’d finished off in the kitchen and hadn’t even got into the bath when the two lads returned. Littl’un stayed in the garden, climbing the tree, but Big D came straight into the house and went to wash his hands.
He was in the smallest room for a very long time for the second time today. I thought I’d better investigate, just in case it hadn’t been beetroot earlier and something was wrong. When I opened the door he was standing at the basin running his hand under the cold tap. He looked up, scowling: “Bloody swan pecked me!”