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.

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Our Gym Bar Invention

You know your child has some sensory needs when you have one of these in your house:

 

 It is not exactly an off-the-shelf product; it is several products that we have combined to create a gym for Little Bear. The basic product is a Pull Up Mate pull-up bar. We got that first because Little Bear was spending quite a lot of time hanging from things. There are not many things in your average household that are safe to hang from though and he tended to resort to the side of his cabin bed which we weren’t too keen on. We decided a free-standing pull-up bar would be safer and we chose this one because it seemed the sturdiest available.

The bar is height-adjustable and we started off with it being half the size it is in the pictures. Little Bear loved it and soon came up with several different moves: hanging, swinging, doing roly-polys in the air, hanging vertically upside down, hanging from the bar like a sloth and moving hand over hand along it, from one side of it to the other. I guess all the moves were giving him both proprioceptive and vestibular feedback, which he seeks.

The only thing I had to be careful of was that Little Bear couldn’t identify when he was getting tired or had satisfied his sensory needs and would just keeping swinging and hanging for ages and ages, tipping himself into over-stimulated territory (see Interoception for more on why this might have been happening). To begin with he would get more and more excited and he would need one of us to tell him to stop and do something else. I do think that has improved with time though and although we do still need to step-in, Little Bear is getting better at identifying when he needs to stop. He is also calmer when he is on the gym and is now using it more functionally to regulate himself. We’ve noticed that when he is generally dysregulated, there are fewer times when he prowls about the house looking for trouble. Now, he tends to go to his gym instead which is certainly preferable.

When it was Little Bear’s birthday we didn’t really know what to get him so we ended up getting some additional bits and bobs to make his gym more exciting. In order for that to work we had to make it full height. We have added a rope ladder, which could be tied onto the bottom bar but Little Bear likes it loose; two hoops and a swing.

 It is fair to say it made his day and was a better present for him than a traditional toy. He quickly invented some new moves including climbing up the frame itself in a star fish shape and then jumping to hold onto the top bar. I frequently have to close my eyes because he does things you would never think possible and even Grizzly gets a bit of a fright sometimes. However he is very lithe and strong and these things seem to come naturally. He is very good at having enough points of contact and at landing safely.

Little Bear also likes to climb up and through the ladder; to do roly-polys on the hoops; turn himself upside down from the hoops and create sequences of moves from one piece of apparatus to another. He often challenges the rest of us to copy his moves but none of us are capable!

When other children visit they are very attracted to the gym too but it is definitely quite over-stimulating for Little Bear if there is more than just him on it (its fine if Big Bear plays).

Another crucial addition with the birthday package was the crash mat, for obvious reasons! It’s one of the fold up gym ones – there is a lot of choice on Amazon. Little Bear also likes this as a place to have a little lie down, I found him there watching TV the other day.

The only other safety factor to consider is the weight of the child using the gym. The pull-up bar itself is suitable for adults up to 110kg but obviously it isn’t really designed for people swinging around on it. Little Bear doesn’t weigh much so it copes with him fine but it does tip a little if Big Bear goes on the swing or ladder. We are going to add some tent weights to the bottom bars for a bit of extra stability but in general I do think the whole thing is more suited to someone on the lighter end of the scale.

Although it looks like a thing of torture and is not what you would expect to find in someone’s conservatory, we are very pleased with it as a purchase. It wouldn’t be for everyone and it does take up quite a bit of space but I wanted to share what can be done. We had been looking at these types of thing (see below) but they are huge and I don’t really know who could accommodate one in their house whereas our smaller DIY attempt works well for Little Bear and would be equally as good outside during the summer.

The whole process has made us realise how talented Little Bear is in the gymnastic department. He doesn’t currently attend lessons as he would struggle with waiting to take his turn and with listening. I’d be interested to hear if anyone has tried 1:1 gym lessons or anything similar that we should consider.

 

 

Interoception

When I went on Sensory Integration training (admittedly about ten years ago) we were taught that there are seven senses: all the ones you usually think of (taste, touch, sight, smell, hearing) plus proprioception and the vestibular system.

Proprioception is the sense of knowing where your body is in space and is stimulated by things like deep pressure, heavy work and vibration.

The vestibular system is in your inner ear and is the sense that helps you battle gravity. It is stimulated by movement, especially spinning or being upside down, and is the sense that causes travel sickness. If anybody has experienced Labyrinthitis they will have experienced their vestibular system on overdrive! Grizzly had it so badly that he literally didn’t know whether he was the right way up or not and couldn’t get out bed for several weeks or even move his head.

I think about Sensory Integration (SI) quite a lot when it comes to Little Bear and I’ve previously written about it a little in Too fast, too hard, too loud. The basic premise of SI is that everybody has a sensory system and we are integrating sensory stimulation all of the time. Everybody’s system is different and what we can cope with/ what we need in terms of sensory stimulation in order to be comfortable in our bodies will differ too. Little Bear certainly seeks proprioceptive and vestibular input which has led to us having a free standing pull up bar in the playroom so he can climb and hang as he needs, instead of seeking similar input in a more dangerous fashion (like clipping his belt loop to the bed and hanging from there. Full marks for ingenuity but a little too dangerous for my liking).

However, a couple of articles have caught my eye recently which have suggested my SI knowledge is a bit out of date. Current thinking is that there are in fact 8 senses: all the ones I mentioned plus something called Interoception. I have done some digging to figure out what it is and why it might be important for our children and thought it may be useful to share.

Interoception is a bit like proprioception but from the inside. It is the sense of knowing how things are within our bodies. It includes things like being aware of our heart beat and whether it has sped up or slowed down; being aware of our digestive system – are we hungry/are we full/do we feel sick; is our temperature ok – are we too cold or too hot; awareness of blood sugar – are we getting shaky and a bit low on fuel; awareness of our bowel and bladder – are they full/ do they need emptying; do we have pain anywhere.

I’m imagining it like there is a telephone system between our internal organs and our brain. The lines of communication need to be kept open so that if our heart is beating faster, it can “ring” the brain which can then take measures either to ignore that or suggest for you to sit down and rest for a bit. Or you might have a full bladder. The bladder would call and tell the brain to make you aware you needed a wee and you would go to the toilet. It’s all good and very effective when working properly but there are lots of things that can get in the way.

Studies of infants have suggested that interoception develops very early, perhaps in the first few months of life and might be stimulated by things such as their parent stroking their cheek or rubbing their back – which are pleasant sensations that might ease internal states. One study showed that being stroked on the face led to a decrease in heart rate in 9 month olds. I read something else which stated that infants “associate interoceptive signals of warmth and satiety with their caregiver’s face, which in turn drives attachment behaviour”.

From the limited evidence, you can see that a child who has been neglected (hasn’t received physical comfort) or who has had multiple caregivers (seen many carers faces), might not develop typical interoceptive skills. There is already evidence to say that children who have suffered physical abuse grow up to have altered pain sensations. One article I read suggested that investigating the impact of adverse childhood experiences on interoception is a big area which requires loads more research.

Even if we don’t fully understand all the reasons why a child may end up with a faulty interoception system, we do know that they can and that they may be under-responsive, over-responsive or seeking of interoceptive input. Being over-reactive to bodily signals such as heart rate, butterflies and muscle tension has been associated with anxiety and depression. I suppose that is the equivalent in my analogy of the brain being phoned constantly for every internal twinge or tickle instead of just for the big ones.

Being seeking or under-responsive to feelings of a full tummy has been linked to eating disorders. In this example the brain isn’t getting the call when the tummy is full or the brain starts to panic when there aren’t calls so stimulates the body to continue eating. Something about the feeling of fullness is desirable. I think the converse could also happen – being empty being the more desirable feeling.

If children struggle with interoception, they can find it difficult to know whether it is something inside or outside of them that is causing discomfort, leading to dysregulation or an unusual response. I think hunger is a really good example as Little Bear definitely struggles to identify when he’s hungry (hangry!) and will tend to get irritable and aggressive with anything and everything rather than identifying his tummy is empty and that he needs to eat.

Some researchers think that interoception could underpin many psychopathologies and could be a lot more crucial than we yet realise. One thing they do agree on is that being able to recognise and respond to your internal states (interoceptive feedback) is a crucial skill for recognising your own emotions, learning and good decision-making. Poor interoception tends to be linked to risk-taking behaviours such as drug-taking, promiscuity and alcohol abuse in later life. Could this be because these things tend to heighten sensation, giving the brain the feedback it needs but doesn’t usually get?

As emotions such as anger, nervousness, and excitement have a physical impact on the body, as well a neurological one, we can see how interoception also has an involvement with our emotional development. In fact interoception is crucial in helping us to identify which emotions we are feeling from the signals our bodies are giving us.

It turns out that interoception is a much more complex and wide-ranging sense than you would initially think.

So what about Little Bear? What I have learned that is of use to him?

Well, according to SPD Star “it’s only when all of the other senses are regulated and in check that our body is quiet enough to listen to what those internal signals are telling our brain”. In other words, most children who experience SI challenges are likely to experience some interoceptive differences and they won’t be resolved until their other sensory needs are being met. Let’s hope that hanging bar is doing its job then.

I have identified that when it comes to the interoceptive sense, Little Bear is under-reactive. I have already mentioned that he would neglect to eat without adult support but perhaps the biggest thing I’ve learned is that he is probably under-reactive in the bowel/bladder department too. I have talked about his Continence Issues previously but this information shines a new light on them. It seems very likely that the phone line between Little Bear’s bowel/ bladder and brain is a bit faulty. When the bowel/bladder start to fill up, the message does not immediately get passed to his brain. It is only when they are full to capacity and the red warning light should be going off that Little Bear’s brain gets the signal to tell him to go to the loo. By that stage he often needs to run and sometimes he inevitably doesn’t make it. The theory certainly fits with the behaviour we observe.

I like this as a way of explaining why he’s not consistently dry, it makes sense. As with most aspects of SI it also means there is hope and that with the right approach he should be able to make progress.

I have found it more difficult to find specific advice about how exactly to work on interoception, other than to speak to an OT or get a sensory diet written. However, what I have gleaned is that you basically want to get the brain more tuned into the signals from the organs/ muscles and Mindfulness is mentioned quite a bit in the literature. I guess that makes sense – quietening everything down so that you can hear the internal whispers that you would otherwise miss. Once you are more tuned into those signals, your brain should get better at listening out for them.

Some of the things we already do at home seem to be appropriate for improving this sense. Things like when Little Bear is hungry, I will draw his attention to the rumbling sounds from his tummy and explain what they mean. Sometimes he will say he has tummy ache and I’ll know from the coincident hyperactivity that he needs the toilet. Since reading about interoception I am getting more conscious of not just herding him to the loo but trying to encourage him to feel that tummy ache and identifying it as the feeling of needing the toilet and explaining that when you feel that sensation, you know you need the loo. This sort of cause and effect doesn’t always come naturally to our children anyway and sometimes they do need us to state things that seem obvious to us (it isn’t obvious to them otherwise they would be able to act on the sensations).

Apparently regularly prompting a child to go to the loo helps them to get used to the sensation of an empty bladder and to experience the contrast with a full bladder which should help to develop their interoception over time. Using technology such as vibrating watches is a helpful way of keeping on top of their interoceptive challenges a bit more independently, as well as teaching them strategies such as going to the toilet during every break whether they think they need it or not.

As with most things adoption related, this isn’t a quick fix. It takes time and getting other sensory needs under control first.

I can see improvements in Little Bear’s interoception system though. He was certainly under-responsive to pain when we first met him and though he still has a high pain threshold (a few more than average phone calls from the injured area to the brain before a response happens) he does now respond to knocks and bumps in a much more typical way. He will cry and come for a rub where previously he could have banged his head on a solid object and not even broken step or let out a yelp. The toileting and hunger issues have improved too, but in a stepwise fashion, where we still have some steps to go.

Interestingly, while being hyper-aware of your own heart rate can go hand in hand with anxiety, some children enjoy the sensation of a heavily beating heart and actively seek this – driving them to exercise – and consequently they become very fit. I’m not sure if this applies to Little Bear but I’m not sure that it doesn’t either as he certainly likes running about/ bouncing/ hanging etc. and is developing into an impressive sportsman.

As with most differences, a differently developed interoception system brings its challenges but also its unexpected silver linings.

 

 

*If you want to know more about interoception, this is a particularly comprehensive article:

https://www.sciencedirect.com/science/article/pii/S187892931630127X

 

**This blog is based on my own reading. If you think I’ve missed something or not quite explained something properly please let me know.