Is Dysregulation Rocket Science?

This is the question that has been playing on my mind this week. I’m pretty sure that dysregulation is not rocket science, but I do know that, as a concept, it seems exceptionally difficult for others to get their head around. For me, the fact that people can’t understand dysregulation is a much more difficult conundrum than dysregulation itself. How could it possibly be so difficult to understand? But it seems it is.

So I suppose a good starting point is what I take ‘dysregulation’ to mean. For me, it is about emotional and behavioural balance. When things get out of balance – because we are worried, upset, scared, angry – we are dysregulated. Most of us are able to regulate ourselves to stay within balance but children who have experienced trauma, such as LB, are not always able to do so. LB struggles to recognise that he is out of balance – physically (see Interoception ) or emotionally – and therefore can’t even begin to bring himself back into balance again. He has to rely upon tuned-in adults, who are adept at reading the outward signs of his inner turmoil, to help him find ways of getting calmer. That might mean them giving him a change of activity, using a sensory strategy or his calm box, encouraging him to rest, giving him food, encouraging him to go to the toilet or perhaps, generally reducing the demands made of him for a period of time. At home, that might mean allowing him to have a tele-tea, helping him with everyday tasks such as dressing (even though we know he’s capable of doing them), staying at home/ not taking him to places that require lots of listening or co-operating, skipping tricky tasks like reading.

Dysregulation can be hard to manage, so often it is the environment which needs to accommodate the child who is struggling, rather than expecting them to be able to make better decisions. Part of understanding what dysregulation is, is seeing that a child cannot manage more at the present time and therefore, as grown-ups, it is us who need to do something different. If a child cannot cope with formal learning today, perhaps we could allow a sensory or play-based approach to learning instead. If a child cannot manage to sit still today, perhaps we could do their lessons outside. If a child cannot cope with assembly, perhaps they could skip it and do something they will enjoy instead.

To me, this is instinctive. To schools, it doesn’t appear to be. There seem to be concerns about rewarding poor behaviour or setting precedents or missing chunks of curriculum. It is hard to get across that learning (of the traditional, reading and writing kind) is not physically possible while dysregulated. It is hard to make teachers see that differentiation applies to behaviour too. We cannot say, “but key stage 2 requires more sensible behaviour’ if the child in question is functioning at an emotional age of 3 or 4. We cannot ask children to do things they are not physically/emotionally capable of doing. Yet, we are.

My biggest frustration, I think, is the school staff’s inability to identify dysregulation in the first place. They see spikes in behaviour, they see oppositional, they see defiance, they see absconding, they see aggression. All those things are dots, that when joined up, reveal a picture. That picture is dysregulation. Why can I see it, but they just see unrelated dots?

Why does absconding not equal flight? Why does aggression not equal fight? Why are they blind to a child’s distress? Why do they think that punishing these behaviours is appropriate?

I don’t know why. I wish I did. This is what makes me think that the concept of dysregulation is a harder concept to grasp than I think it is.

Schools not being able to identify dysregulation, is a very real problem because they then do not respond in the most therapeutic way, often using approaches that will inflame, escalate, worsen, instead. LB had an incident last week where school clearly got too much for him and he ran out of the classroom onto the playground equipment. To me, the running is a clear sign of him trying to get away and him needing a minute. Instead of leaving him alone until he was calmer, a member of staff chased after him and demanded he get down at once, in a stern shouty voice. So he told her he hated her and to shut up. Then he got into trouble for using inappropriate language.

I mean, come on people. Had they have stopped and thought about what his behaviour was communicating – that everything had a got a bit overwhelming and he needed a break – they could have checked their response. They could have applied the strategies in the psychologist report (that they used school funds to pay for yet aren’t heeding). Had they have left him a minute, he would not have used any ‘inappropriate’ language at all. By not recognising his dysregulation, they escalated the situation and blamed him. This isn’t okay. It is also extremely frustrating to somebody such as myself, who has gone to great lengths to explain LB’s dysregulation about a gazillion times before.

School have got better at linking some dysregulated behaviour to triggers, where the trigger has been a specific situation immediately prior to an outburst e.g. a disagreement with a peer or finding a particular piece of work difficult, but I am having a devil of a time getting them to understand that big events such as a school residential or transition to the next class can lead to a generally dysregulated period. I can’t make them understand that an event last week can impact on behaviour today, as could an event in three weeks’ time. Admittedly, if the event is nothing to do with them, I can’t expect them to be psychic, but everyone knew about the residential and I laboured the possible impacts I thought it could have. I can see them looking at me strangely though, as if I’m being obtuse by trying to link him staying away from home last week with him refusing to do his work today. I can’t make them see that emotions and fears feed behaviour. If something has happened, such as a residential, that has such magnitude it shakes the core of your own sense of belonging and safety, ripples from that will be felt across the days and weeks before and after. The ripples will manifest as tricky behaviour. They will mean the child is generally more sensitive and less tolerant. They will not be able to cope with the same demands, as their being is busy dealing with the aftershocks.

I don’t know how to explain that in another way that is any clearer. It feels pretty clear.

When you truly understand dysregulation and the specific ways that it impacts a specific child, you can predict how big events might impact them. It was so obvious to me that LB would behave as he did the day after the trip, that I didn’t think to spell out my predictions to school – I assumed that after all the training and meetings, it would be obvious to them too. But it wasn’t. They seemed flabbergasted that his behaviour had suddenly taken a dip and disbelieving when I linked it directly to the trip. Instead of two plus two making four, it’s as though computer says no.

Something is going fundamentally wrong. I don’t know whether it’s a refusal to hear it, whether I (or PAS or the psychologist) still haven’t got the explanation right, or whether it’s more sinister. If a person still, deep-down, believes a child is behaving a certain way because they ‘are naughty’ or because there are flaws in their parenting, perhaps they just won’t accept that dysregulation exists. Is that why they don’t join the dots? Because they don’t actually believe they’re linked by anything more than wilful disregard for school rules?

I don’t know, but the lack of certain members of school staff being able to identify LB’s dysregulation, let alone deal with it appropriately has made me raise some serious questions.

It’s been a long week. I have been extremely frustrated and exhausted by being here again and doing this again and saying the same things, again.

And then I met the new Head Teacher.

Wow. What a lady. For the first time, in a very long time, I didn’t need to educate an educator. She listened to me, she pre-empted most of the things I wanted to say and positively encouraged me speaking up and speaking out. I think she might have arrived just in the nick of time, before I lost the plot with school entirely.

Here’s to the penny finally dropping. Keep your fingers crossed guys, I may have just happened upon a very much needed ally.

 

 

 

 

 

 

 

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Adopted Children & Eating Issues

A really interesting chat broke out on Twitter earlier this week between several adopters. It was one of those chats where you realise that all your children do something that hitherto you didn’t really identify as being an ‘adoption thing’ but actually, now everyone is doing it, it must be. The thing we were talking about was eating. We have quite a few behavioural issues around food here but this chat was more about the mechanical side of things: disruptions to the process of taking a bite of food, chewing it and swallowing it. The chat really began around children holding food in their mouths for much longer than average, something which seems to be common in many adoptive households. We also noticed that many of our children overstuff their mouths and choke more often than you’d expect.

The big question was why? We had a healthy debate and several of us stuck our oar in. As with most complex issues my first reaction was to blog it out so here is my summary of the main factors:

The reason for holding food in their mouth could be a sensory one. It could be that a child is under-sensitive to sensory information in their mouth and can’t ‘feel’ the food there very easily. If this is the case it is likely they would be better at eating/chewing/swallowing food which has a more extreme taste or texture or temperature. Spicy foods or those with a lot of crunch or those which are sharp or bitter will provide the mouth with more sensory information than bland foods, helping a child to ‘know’ it’s in their mouth. The difficulty here of course, is that you child will have their own taste preferences and these will influence the range of food they will eat. I think this category could apply to Little Bear but he really doesn’t like spicy foods. He does like a good crunch though, especially from a crisp, but won’t tolerate it from a raw carrot. He has no difficulty dispensing with cold ice cream!

The converse of this point could also be true: some children are over-sensitive to sensory information in their mouth. These children are often sensitive to different textures finding some pretty disgusting. It’s possible that these children hold food in their mouths because it is preferable to them than swallowing it. Other signs of this could be spitting food out or an active gag reflex.

Often children need to get used to a bigger range of textures before being asked to eat the consistencies of food that bother them. Because of how the sensory system is wired, the next best place after the mouth to explore texture is with the hands (and if they can’t manage this, then with the feet). In typical development, young infants naturally put their hands in their food and explore it. This is an essential developmental step and some older children need support to revisit it to help with eating issues. Sometimes the foods they struggle to tolerate can be played with and explored manually before them being brought close to the lips then perhaps just touching them with their tongue tip. This should be a gradual process (weeks not hours) and needs to be managed sensitively. It should be done with a child, not to them. You can also lessen sensitivity through general tactile work – exploring different materials etc. It doesn’t necessarily have to be done with food though that does work well.

I suspect there is a third sensory category when it comes to eating which would be ‘sensory seeking’. I don’t think you would see food being held in the mouth with this aetiology but you might see over-stuffing as a child tries to get the most sensory input they can. I think you would see a constant need to eat and perhaps wanting to eat stronger flavours/ more extreme textures/ more extreme temperatures. It wouldn’t be a huge leap to think that children who seek oral sensory input would also chew/suck non-food items, though I think it is possible to seek oral stimulation without the food side of things.

However, there are other possible issues at play. What about experience? As most of our children were not with us when they were babies, we have very little information about their weaning. We don’t know if they were allowed to experience the getting messy-putting-their-hands-in-their-food stage. We don’t know what range of tastes they were given or even if the types of food they were weaned on were appropriate for an infant. We don’t know whether that may have led to sensitivities and a greater likelihood of gagging. We don’t know whether they went hungry or whether they were force-fed. All these options could cause potential eating issues now.

We do know though that tastes develop based on experience – the more times you try a food, the more likely you are to like it. We also know that there are ‘windows of opportunity’ within the weaning phase and if children are not exposed to tastes at these points, the window can close.

I strongly suspect that Little Bear hadn’t tried a wide range of foods before he came home. He certainly wasn’t too familiar with vegetables. If children haven’t been exposed to many different tastes and textures, they won’t eat a wide range. Things that are new to them will seem alien and it is likely their first reaction will be of dislike. They are likely to pass these foods around their mouth/ spit them out etc.

Research suggests that rather than assuming they definitely don’t like that food, we should keep offering it to them. Obviously you have to be extremely careful with making children eat foods they don’t want so this is pretty tricky. We used to do a lot of hiding vegetables – in sauces or soups and Little Bear happily took them that way. I also used a bit of good old bribery (some of you won’t like this) e.g. you can have pudding when you’ve tried one bite of x/y/z vegetable. We’ve had good success with this and I’m really proud of the range of vegetables Little Bear will choose to eat now.

The other aspect of experience that is important is that our muscles develop alongside the foods we eat. If we just eat sloppy or dissolvable textures all the time, our chewing muscles won’t develop. Many children who have experienced neglect have low muscle tone in general. Some have such low tone that their face can appear droopy and they need specific stimulation of those muscles to improve the tone, often completely altering their appearance.

I suspect that Little Bear was mainly given a mushy diet in foster care and didn’t experience a range of textures like fish or meat. I have noticed that he is more likely to hold chewier items in his mouth and this could be because his muscles are underdeveloped and chewing is actually really hard work for him. I chatted this through with a friend who is experienced in children’s eating and drinking difficulties a while ago and she suggested building texture up gradually. You can’t expect a child to go from eating Weetabix one week to steak the next. There needs to be a gradual build-up of chewiness. I think this has led to an improvement here. Little Bear will now happily polish off a range of fish, sausages, bacon or chicken (if it’s soft enough). He will eat beef but it is still noticeably effortful for him, it stays in his mouth a long time and can result in it being spat out.

My friend also pointed out that if you aren’t experienced in chewing (or sometimes this just happens randomly) you don’t develop the side to side movements of your tongue that you need to push food from one side to the other as part of the chewing process. She said you can develop this outside of eating by playing games that involve trying to touch a specific item in a specific place with your tongue or just the teeth on one side. I used to add a little game onto the end of tooth-brushing involving Little Bear playing ‘tag’ with his tongue and the brush.

Although I don’t want to get into the behavioural side of things too much, it is also pertinent to consider a child’s general presentation. Do they have difficulties with attention control and concentration in general? Little Bear does. Could it be that he gets distracted mid-chew and forgets he has food in his mouth? I do tend to give him frequent prompts and reminders to keep chewing. I also need to remind him that his mouth is full so he shouldn’t put the next mouthful in yet.

So far, that is quite a lot of possible factors that could be affecting our children’s eating. However, I haven’t really mentioned swallowing/choking and the factors above don’t really explain why some children who were removed from neglectful situations very early or even at birth still go on to have these types of difficulties. Could something be going on in utero?

It’s certainly possible because the bit of the brain that is most developed when a baby is born is the brainstem. This is also the bit that controls basic functions such as eating and drinking. The cortex and higher brain regions mostly develop after birth and are consequently very susceptible to environmental damage such as lack of stimulation. Because the brainstem develops during pregnancy, one assumes it is more susceptible to damage from things that happen in utero than any other bit of the brain. We know that recreational drugs, including nicotine and caffeine, as well as alcohol and stress hormones such as cortisol cross the placenta and impact an un-born baby. I have struggled to find specific research about particular pollutants affecting the eating and drinking areas of the brain but it isn’t a huge leap to imagine it’s possible. Is there something different about the structure or connections in our children’s brains that lead to the types of mechanical eating difficulties we are seeing? Perhaps.

At these points I like to reassure myself with the concept of brain plasticity – the ability the brain has to build new connections and new pathways; to learn to do things it couldn’t do before. I read that the brainstem is less plastic than the cortex but it is still capable of plasticity. Maybe change in the areas it controls is more difficult to achieve and may take longer but I like to think it’s possible.

It seems our random Twitter chat has led us unwittingly into a fairly complex area. My feeling is that this little corner of behaviour is under-researched and I suspect I have raised more questions than answers. If anybody knows of any articles that could tell us more, please send them my way. In the meantime this one was sent to me and I think it’s well worth a read: Article about the impact of trauma on the developing brain

 

 

 

*I probably need to point out that all children are different and will all have been impacted in different ways and to greater or lesser extents by their experiences to date. The reasons given here are just some of the possible reasons and may or may not apply to your child. They are also my personal thoughts and based on my reading only.

 

 

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.