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.

 

 

Aphantasia

I know I promised a few posts based around product reviews while I get some book writing done but this week an opportunity for a guest post cropped up which I was excited to take, so you can have that instead. The post is all about Aphantasia, a condition I had never heard of before and that has only been discovered by Scientists fairly recently. A friend of mine recently happened upon some information about it and realised that she has it. I’ll let her tell you, in her own words, all about it.

 

It started with a tweet …

So, on Saturday 31 March I read a tweet by Toksvig. I don’t follow her, I didn’t know who she was, but it was retweeted by Rufus Hound, who I do follow.

The tweet read:

“I have aphantasia. It means I don’t see any pictures in my head.  No visual imagination at all.  This affects my ability to retain memories, or perhaps, my ability to recall them.  I also don’t have an easy way to recognise the faces of people I don’t know well or see often”

I was gobsmacked.

It was the first time ever, just over a month shy of my 50^th birthday, that I realised people did see things visually in their heads.  I was sat with my family at the time; husband, daughter and her partner, and asked them if they could do it, and was amazed that they said they could!

Further probing at my Mother-in-Law’s later revealed that she can do it too. When she counts sheep, she can see them in her mind.  She can add detail, like a grassy field and a sheep dog running around.  She just could not believe I couldn’t do it, and suggested I must be doing something wrong – concentrating too hard, over thinking it maybe!

I thought seeing things in your mind’s eye was a figure of speech. I thought people did what I did, and internally described situations, rather than actually seeing them.  In that respect, all I have is blackness – internally I am blind!

It made a few things make sense. I do have trouble with faces, especially if I see someone out of context.  I fail to recognise people I know, but I also do the opposite and think I have seen someone I know, but it turns out not to be them!  My husband has always said he hopes I never witness a crime, because I would be absolutely terrible at giving information to the police!  I’d have the wrong person locked up in a jiffy!

Only the morning of my discovery I had been to a local park to take part in Parkrun. I parked the car a 5 minute walk away and walked into the park.  I’ve done it before, but over a year ago and not alone.  After the run, I really wasn’t sure of the way back to the car!  I could see a path, a wide gate across it, with an opening to the side, and a huge puddle in front, so very visually distinctive, but  I could not remember if I had passed it or not!  I spent a couple of minutes eliminating other possibilities.  I was a straggler, one of the last to finish the run, there was no one to follow, so I just had to try it and see.  I was right and it was the correct way to go, but it required thought and effort on my part to reach that conclusion.

Googling the subject led me to an article on the BBC website, and a link to a quiz ( BBC quiz). It required me to try to picture faces of the people I know well, or a scene, like a beach . I literally answered every question with “no image at all” putting me in the lowest scoring bracket.

My first thought on this discovery was to feel quite sad. I’m already night blind, have no 3D vision and am self-diagnosed with dyspraxia – nothing official but I tick a lot of boxes, so I really felt that I was missing out – that my experience of the world was clearly a lot less rich than that of other  people.

I felt most sad that I could not picture up my Mum’s face; she died 22 years ago. If there was an image that I would conjure up if I could, that would be the one.

It’s very early days but at this moment in time, if I could change, and be able to perceive the world like other people do, I would, but I realise I do have a few things going for me!

I like language. I have a strong internal dialogue.  The reason I can now remember what the path at the park looks like, is because, when I was a little lost, I made a conscious decision to verbally describe it to myself, and doing so has made it firmer in my mind.

Also, I love to read. I devour books, and clearly my pleasure in them is not diminished by my inability to create pictures in my mind.  In fact,  Jenifer Toksvig commented on a tweet of mine that she speed reads,  because she does not need to wait for her brain to create images, and I read quickly too and take on verbal information well.  (Don’t expect me to forget that offhand comment you made 20 years ago!)

I’m going to take more photographs, and fill my life with pictures of people and places I love so that I can revisit them that way.

I am going to offer to take part in research by the University of Exeter on the subject, and thanks to Jenifer Toksvig I have joined a support group on Facebook.

And in the future, if I ignore you, or seem a little bit confused when I see you, remind me who you are and how I know you. I won’t have forgotten you, it just takes my brain a little bit longer to trigger the memory in some other way; the pieces will come together eventually!

 

 

Thanks to my friend, who wants to remain anonymous, for writing this when the discovery is so new and raw to her.

I’m fascinated by the concept and it’s got me thinking how my visual imagination works. I took the quiz and scored within the average range but when I try to ‘see’ something in my imagination I don’t know whether there actually is a picture there or not. I know that sounds daft. I know my visual imagination isn’t bad as I can recall a colour well and can go to a shop and find an almost exact match for something without having the thing with me. I don’t know if I can actually ‘see’ the colour if I shut my eyes but I have a perception of it on some level.

The points about facial recall are interesting too. I feel as though I have got worse at this with age and will often know that I recognise someone but can’t place who they are. It only really happens with people I don’t know well whereas I’m guessing for the author of this piece that it happens to her fairly frequently and with people she does know well.

It’s also interesting to think how this works for our children, especially if they have trauma in their background and may have blocked out some of their visual memories. I wonder if Aphantasia can be acquired. I read something that suggested that visual recall of memories can be intrusive and can be a symptom of PTSD which I guess is the polar opposite of Aphantasia.

The difficulty with it all is that it is a very subjective concept and it is almost impossible to know what is happening in someone else’s brain. I think I take whatever my brain does for granted, so much so that I don’t really know what it does. I mentioned Aphantasia and what that is to Grizzly and he was horrified because he said his whole way of thinking is based on visualisation and he didn’t know how his brain would work without it.

I’d be fascinated to know your thoughts and how other people’s mind’s eye works.