The Big Trip

Last week I was getting all irate because I couldn’t get LB’s TA to understand the magnitude of LB going on a residential – see Hysterical . I was also worried about how LB himself would cope, following moments of distress and him struggling to sleep.

After that, things improved a bit, seemingly because they’d spoken more about the details of the trip in school, resulting in LB realising they weren’t in fact camping out in tents. The idea that they were must have been worrying him because he did settle when he realised they weren’t. I have no idea where he got that idea from in the first place – it just goes to show that not all worries are predictable.

I didn’t press any issues with school because things seemed to be ok.

The night before the trip, LB grew anxious again. He really struggled to get to sleep and got himself in quite a state. He was worried about “missing us too much”. The next morning, we woke to him to him crying and shouting the house down. It was such a shame to hear because it isn’t like him to get so distressed.

LB came into bed for a cuddle and soon rallied. He started doing my make up while I was still half-asleep and, despite, or perhaps due to me looking a state, it cheered him up considerably.

When BB got up, he did a fabulous job of encouraging LB – telling him that he was nervous when he went on the trip too but that all his friends would be there and it’d be ok. He is so instinctive that boy, it really does make my parenting job easier.

It was almost as though once LB got his head straight that he wanted to go and that it would be fun, even if he was nervous, he just focussed himself on getting ready. Soon we were at school, amongst a throng of similarly excited children and LB was fine. He didn’t struggle to separate at all (as I thought he might have) and went right on in.

I had a quick word with the TA and impressed upon her the importance of calling me, should he need her to. I could see her reluctance, but ensured I got my point across.

 

It was a very strange evening at home, that night. It was so quiet. And so tidy. And something was palpably missing.

Our thoughts were not far from LB all evening. I checked my watch every ten minutes, trying to think what he’d be doing at each point. I was surprised by how much BB worried about him – he too wondered aloud about him much more frequently than he would if he had been staying with grandparents, for example. We all knew this was a huge deal and could have gone any which way.

From about 8pm onwards, I kept thinking my phone would ring any second. But it didn’t.

I kept checking the school Facebook feed but it hadn’t been updated since 4pm so that revealed nothing.

By about 10pm, I figured it was safe to take my shoes off and have a cup of tea, whilst simultaneously wondering if they would call the second I sat down.

But they didn’t. It seemed unlikely they’d call during the night so I assumed this was us: he was really doing it. It would have been really appreciated had someone taken a couple of seconds to send me a message saying he was fine, but that didn’t materialise either. I half thought, due to them having me down as mildly hysterical and neurotic, that they would have sensed the need for such a message. But there we go.

 

By school pick up time yesterday, I was very keen to get him back again. I had half envisaged him running out of the classroom door to be swung into a swirling hug, but, this being LB, our reunion was a lot more nonchalant. I had forgotten that we’d probably get a bit of the cold shoulder because we had been separated for twenty-four hours. That’s always the way of it. But, in the grand scheme of things, it was ok. He didn’t hate us, he was just a bit quiet and standoffish.

He was also, what Gary would technically describe as, “dead dog tired.”

It happened to be parents evening, so between the information LB shared, the chats I had with his teachers and accusations made by random children in his class, I managed to piece together an accurate-enough account of what actually went down. I think he enjoyed it overall. Apparently at teatime on the first day, LB began to droop and asked to go to bed. He does go to bed early and his body is very much ruled by a strong circadian rhythm, and affected by not sticking to it. The staff jollied him along because they hadn’t done the bonfire and marshmallows yet. LB managed to power through but then, obviously, went beyond tired and by the sounds of it, struggled to get to sleep. I suspect there was a degree of high jinks. However, I’d rather that than him be upset and crying for us. And, according to his TA, “all the boys were a nightmare for bed.” And, well, I did warn them.

I suspect the second day was trickier – LB was tired and no doubt struggling with regulation. But, he came back in one piece and so did all the staff.

I think this is a probably a time where I don’t need to worry about the details too much – instead focussing on the bigger picture. That picture is that LB, at seven years old, with a history of neglect and trauma, has managed his first residential, without any significant ill-effects. What a guy.

I thought he’d have been fast asleep early last night, but no. I suspect if there are any lasting effects, it will be tricky bedtimes for a few days, while he re-adjusts and maybe a dysregulated weekend – no big deal.

I hope that him going away and us still being here when he came back is powerful for him. We all told him how much we missed him and how weird the house was without him. We told him how proud we are of him for managing it. I hope it’s another step forward with his attachments, and with his self-confidence too.

LB might be the smallest member of our household but my goodness he’s a big presence. Even when he’s asleep, the house feels fuller and more complete when he’s in it. I think the trip gave us all a strange vision of what life would be like without him. It would undoubtedly be tidier – the tornado of discarded clothes and toys notably missing; quieter and calmer. But, jeez, it’d be boring. Who wants sedate when you could have exuberant, unpredictable and hilarious? I know which I’d choose, and there’s no contest.

 

Addition – Saturday

As you can tell from the above, I thought we’d survived and were kind of okay.  I didn’t anticipate that I would be called into school on Friday evening, faced with teachers who were surprised at LB’s lack of ability to control himself and have a smiley face chart waved under my nose as a supposed cure-all.

I actually despair.

Surely it is not that difficult to attribute dysregulated behaviour the day after a trip, to the trip? Surely, it should have been obvious to all that Friday would be a very tricky school day? Surely, or so we naively imagined, the demands and expectations would be reduced accordingly, to accommodate LB’s temporarily reduced window of tolerance? Surely?

Err, it would seem not.

Instead there was outrage that LB wouldn’t do what was asked of him and that he was rude to some teachers. We just cannot accept this behaviour, there have to be consequences.

Groan.

Then, without consulting any of the members of staff who know him best, and without reading any of LB’s paperwork, two members of the senior leadership team thought they knew how to sort him out. A smiley face chart. Seriously. I think they actually thought I’d be pleased with this new fangled invention.

I’m just so frustrated that every time we think we’re there; that school understand LB’s needs and how to support him, something like this happens to suggest the polar opposite.

Grizzly and I now feel we shouldn’t have let him go on the trip. School clearly aren’t able to accommodate and support his needs properly when dysregulated. They can’t even recognise that he is dysregulated. Essentially, they can’t keep him safe. And if that’s the case, they can’t take him on any trips. Its so frustrating because I told them and I told them, but they thought I was exaggerating. Then when the behaviour we predicted does occur, they think its nothing to do with the trip, it’s him getting spontaneously extra naughty. Not my words – how I imagine they think of it.

I could scream.

And while I’m ranting, getting dragged into school means my children are left in the playground, to their own devices, which is clearly unwise for LB. I’m discussing his behaviour while he’s given further opportunity to misbehave.

It is exhausting being a parent of a child with behaviour needs – not because of their needs – but because schools just cannot wrap their heads around them, despite training and meetings and about a gazillion discussions. The patience of a saint is required and mine is running out.

 

 

 

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Sensory trial and error

One of the biggest priorities at our house these days is helping Little Bear with his regulation. It has always been an issue but I think because other things have settled down, it has come more to the fore. I have been experimenting with various sensory hacks to see what works and which ones we can use routinely to improve things in our daily lives. Here are some things we have recently tried and how we have got on:

Regulation at the table

Little Bear has always struggled with sitting still. He’s fine on a sofa and can sit for quite a while but finds sitting at the kitchen table for mealtimes particularly tricky. He is better on our wooden bench than on any of the chairs but still tends to kneel up and change position a lot and get down a lot. I have been trying to engage Little Bear in his own regulation more so I recently asked him why he moves about so much. I had no idea if he’d have enough insight to be able to tell me but it seemed worth a try. He said he didn’t like being too low down. We then experimented with putting various items on the bench to make him higher and a bit more comfortable. Several were no good or too unstable but in the end we settled on a beanbag. We can tuck it through the gap in the back of the bench so it stays in place and Little Bear has given it his seal of approval.

I have to say it has been pretty miraculous in its efficacy. Little Bear is certainly able to sit still for much longer with it and doesn’t change his position half as much. Crucially Little Bear prefers it and goes looking for it if I have taken it off the bench for any reason. My feeling is that children will show us when we are getting the sensory input right for them and this hack is ticking all the boxes. I have been considering a wiggle and sit cushion for a while but I don’t think we need one, the beanbag is perfect.

Regulation when out and about

This is the biggest challenge for us and one I would really like to come up with a solution for. We generally notice Little Bear’s difficulties with regulation when we go on a day trip somewhere or go somewhere new. I guess there might be an element of anxiety underlying the behaviour and we certainly feel Interoception has an impact. We are continuing to work on that but it is not a quick fix and I don’t think we are ready to feedback about how it’s all going just yet (but I will when we’ve made more headway). In the meantime, we have been experimenting with things that help in the instant of dysregulation, while we are waiting for longer term solutions to work.

If we are having a dysregulated day out, Little Bear continually seeks movement, which can be unsafe depending where we are. Often we let him run where we can or swing or climb to his heart’s content. I realised on a recent day out though that all the movement doesn’t actually seem to help, if anything, it gets Little Bear more and more dysregulated. Therefore I hypothesised; we needed to add in more calming elements, rather than encouraging the seeking elements.

I remembered that we used to use a rucksack for that purpose so we have re-introduced it. On the first attempt it didn’t go particularly well as the straps were a bit loose and kept coming down Little Bear’s shoulders which annoyed him. The next time we tried a different bag which has a little chest clip to keep it in place. It was a mixed outcome. We could certainly tell the difference in Little Bear’s behaviour – the weighted bag did calm him and stopped the running and swinging almost completely. I would say this was a fabulous outcome apart from one crucial factor: Little Bear doesn’t like wearing it. I don’t want him to think it’s a punishment of some sort and the fact he doesn’t like it makes me think we haven’t quite got it right sensory-wise. I suppose we need to experiment with the weight of the bag; how long he wears it for etc. I know that when I was taught about weighted blankets, the rule of thumb was always to remove them after 20 minutes as otherwise the body modulates to the weight being there and the effects cease. However I have played around a bit with just letting Little Bear wear the bag for a bit then taking it off but I feel as though the effect goes with the bag and as soon as it goes, he’s back to seeking movement again.

I also wonder if there is another way to give him ongoing proprioceptive input that doesn’t involve wearing a bag? I know you can get pressure jackets but I feel as though he would be too hot. Please make suggestions if you have any as we are certainly in the market for trying something else.

Regulation at bedtime

Little Bear has one of those heavy cuddly toys that is filled with sand, I think it’s a large newt and I have been experimenting with that lying on him to help him calm at bedtime. Again I would say it works a little but then he chucks it on the floor!

In the winter if Little Bear can’t get to sleep, we have a heavy knitted blanket that he sometimes likes me to put over the duvet on top of him which works well. It is generally the sensory approaches that Little Bear is collaborative in that work the best. He will tell me when he does or doesn’t want the blanket and I assume that relates to when he does or doesn’t need it.

I have noticed recently that he has a big fluffy blanket on his bed at the moment and he likes to get all cosy inside that, especially if he hasn’t got his top on. I feel as though it would be quite an unpleasant sensation but it obviously works for him. Looking at how children self-soothe can be a key way of discovering sensory hacks that work. Little Bear still has comfort blankets in bed. They are muslin squares and it is the label that he likes – he strokes his lips with it which seems to soothe and calm him. I can’t think of anything worse and he often tests it out on me knowing full-well that it will make me squeal in discomfort. I suppose it’s a good way into talking about how everyone’s sensory needs are different!

I am now wondering whether proprioception is the best avenue for calming for Little Bear or whether the right kind of tactile stimulation would work better for him. How would we go about providing that whilst walking around a zoo or museum I wonder?

This has definitely been a post with more questions than answers (apart from beanbags, they are an answer) so I apologise for that but if anyone has any clever solutions I’d love to hear them.

Regression

“Get off me” he says, shrugging away from my touch, his body becoming stiff and unyielding. I’m struggling to engage with him in any meaningful way. He’s either zoned out on the IPad or running around slightly manically outside. His concentration span is pretty much zero and despite trying, I can’t get him to sit down and play with anything. He is wetting several times per day. Meal times are equally as challenging. He is struggling to stay seated for more than a minute or two and unless the food is spooned into his mouth he won’t eat. There is little to no conversation; my attempts are met with noises or just ignored. It is hard to find the bond between us. Last night, at bedtime, he looked into my eyes and pinched my face as hard as he could. This evening, before tea, he refused to follow any instructions and when we insisted, there was a punch. He would not sit at the table and when physically stopped from climbing on the back of the bench and pulling on the radio, he said we had hurt him. An angry face, a tense body, a fist raised in threat. A darkness; a distance.

 

“I love you forever” he says, snuggling closer, pulling my arm tighter round him. We sit for a long time, watching the film. Occasionally he leans his cheek against mine or shifts his position a bit so we can cuddle more comfortably. He jumps up. “Pause it Mum” he says, “I need a wee”. We chat about the film and what we might do later. We joke and he laughs a lot. His laugh makes me laugh. At teatime he feeds himself. The next day we go for a bike ride. He rides on the road for some of it and listens to every single instruction given, including ‘turn left’ or ‘turn right’. When we say ‘stop’, he stops. It’s a fairly high risk activity and we trust him to do it sensibly. We have a lovely time. When we get back, he changes his clothes as he’s asked and we sit down to play a building game. We imagine, we build, we chat. We have fun. As I’m getting tea ready, he plays with Grizzly. They play a game with challenges in it – he writes words down, he does simple number puzzles – in between throwing a ball about. There is a lot of laughter. Relaxed body, happy face, relaxed atmosphere. A warmth; a closeness; an enjoyment in being together.

 

It sounds like a description of two different children, but it isn’t. They are both Little Bear. You’d be forgiven for thinking they were two different people though, even in the flesh, the contrast being as stark as it is. The first paragraph is a presentation of Little Bear during a regression, the second how he presents normally. I would say the child I’m describing in the second paragraph is with us the majority of the time, upwards of 80% of the time. But the child in the first paragraph does appear sometimes, usually quite out of the blue. It can be a bit shocking when that happens because we are so accustomed to the second presentation that we almost forget that the first one is a possibility. On the other side of the coin, when we are in a regression, it can be hard to imagine how we will get back to the second paragraph. Is that even possible? Have we imagined that life is usually like that? Where has the close bond with our lovely little boy gone? And most concerning, how is it possible to feel this distant from your own child? What does it mean for the future? As well as several other concerns that can easily spiral from there.

I know from experience that there is no need to be quite that dramatic because we have consistently passed through regressions and back to paragraph two on countless occasions. However, when you are in it and it’s happening, it can be pretty wearing. It can be easy to doubt what you are doing and your ability to navigate the challenges in the best possible way. At those points I generally have to remind myself that although we no longer know the child in the first paragraph very well, we did used to. It was the child in paragraph one who moved in two and a bit years ago and he was the child we lived with day in day out for months and months while he slowly flourished into the child in paragraph two. We do know what to do. We can reach him, despite him seeming unreachable at points.

The regression I’ve described above is quite a severe one by current standards. Usually we can hover about somewhere in a grey area between the two descriptions. It could just be that Little Bear really struggles with toileting for a while or we have a phase of needing to feed him or he loses the ability to sit and read to us. Sometimes it is several of those things and before Christmas it was all of the things, exactly as I have described.

We are versed enough in Little Bear’s behaviour that we can identify a regression pretty quickly now. We also know that something will have triggered it but as I wrote about in Adoptive Parent: Behaviour Detective it can be extremely difficult to figure out what the cause is. The behaviour described above was present for three or four days, getting progressively worse, after we returned from Lapland. I had blogged last week about our trip to Lapland in A Magical Adventure? and was starting to feel stupid that I had been so positive about it when actually the fallout was just happening afterwards. I remembered about when we had A Mini Crisis and Little Bear had seemed completely fine at the time but had spent the rest of the weekend at melting point. Come to think of it, he is pretty good at adapting to situations when they happen but can become discombobulated afterwards. Had Lapland been too much?

Grizzly and I had a chat, as we always do when things seem to be going awry. Could it be Lapland? Could it be the change to routine of the holidays? Could he still be feeling unwell? What could it be and what would we do?

The problem was solved surprisingly quickly for us on the very next morning by Little Bear himself. It was Christmas Day and of course Santa had been and left full stockings. Little Bear wandered into our bedroom, stocking in hand, with a massive grin on his face and none of the darkness of the previous evening. “I didn’t think Santa would come to me but he did” he beamed and just like that, the gorgeous little man from paragraph two was back (and has stayed).

Whilst I was obviously relieved, my heart did break a little. What had made him think Santa wouldn’t come to him? I know it’s obvious. I know all about how difficult Christmas is for children who have had adverse life experiences; for children who fear they are too bad to warrant gifts. I just hadn’t anticipated it for Little Bear because we have had two previous Christmases with him, which he has coped exceptionally well with. It sounds a little ridiculous now, but he hadn’t said anything. He hadn’t given any indication that he was worried about Santa. He had shown us, through his behaviour and we did know there was something amiss but my detective skills had let me down somewhat.

We don’t do any of the Elf on the Shelf malarkey or in any way push the whole you only get presents if you are good thing but I suppose now that he’s at school and his comprehension skills are much improved, Little Bear is more affected by outside influences. Thinking about it, the big guy himself in Lapland had asked the boys if they had been good and I had cringed at the time (but drawn the line at correcting Actual Santa!).

Little Bear has such a complex tangle in his brain and evidently he still struggles to express his thoughts and fears with words. It is at these times that a regression tends to happen, or when he is poorly, and I guess for now, we will need to continue to ride them out, firm in the belief that we will return to paragraph two sooner or later. We have to remind ourselves to be patient, consistent and as nurturing as possible when the regression is happening. It is essential that we wonder and try to see the world through Little Bear’s eyes in order to possibly figure out what might be behind it. Realistically we need to accept that we won’t always be able to detect the trigger. We might never figure it out. It might not be something that can be consciously identified anyway. But we must ask the questions, and endeavour to stay in paragraph two, because regressions aren’t fun for anybody, least of all Little Bear.