Podcast Episode 24. Most of us go through our day unaware of how our brain is continuously filtering everything our senses are picking up. This filtering means we are only left with the information we really need and we don’t get sensory overload. This week we talk to Caroline who explains to us what happens when those filters are not working as they should.
Caroline shares the journey of her son James as they navigate the diagnosis maze. She talks about the importance of putting the puzzle of diagnosis together in order to be able to start to figure out the strategies that work for James.
Caroline talks about how finding out that James had auditory processing disorder fundamentally changed the way he was being taught in school. She explains not only what this disorder is in everyday language but also how it impacts on James and the strategies they use to help him.
The impact of finding out that James also has sensory processing disorder is also talked about by Caroline. She explains in an easy to understand way what exactly this is and helps us understand how much we don’t know and don’t think about our own senses.
If you have ever wondered how to help someone you know cope with a world they sometimes find overwhelming, then you will find value in this podcast. Caroline has a knack of explaining in an easy to understand way some of the possible reasons why overload happens. More importantly she shares some of the strategies that helps her son James move forward and learn to manage sensory overload.
[2.40] – The early years with Caroline and her son James
[4.00] – Realising that planning for the future needs to start now
[5.00] – Why the more you know the more you can help
[7.20] – What is Auditory Processing Disorder?
[9.15] – What this means in a classroom environment
[11.00] – What is Sensory Processing Disorder?
[11.25] – There’s more than 5 senses
[12.15] – Filtering out the extraneous
[13.45] – The sensory profile
[14.40] – Using a sensory diet
[15.00] – Therapeutic listening programmes
Really put yourself in someone else’s shoes, literally feel those shoes.
DEBRA: Welcome to this week’s episode of the Journey Skills podcast. When we started this whole Journey Skills project, I don’t think we really knew where it would go. We hope the people would find the information we were sharing information useful and that people were willing to tell us their stories. And so far, I think that’s exactly what’s happened. The stories I’ve been lucky enough to be told and the general tips parents and professionals who share had been really insightful. It is pretty obvious to us all I think that community is so important in helping us cope with what can be some pretty demanding challenges.
I think this episode just reinforces how useful it can be to share our stories. This week is all about senses, hence the name. And I hope, that like me, after you listen, you will have been reminded how much senses impact on everything and just how overwhelming ordinary things can be for some people. Of course, I expect some of you are way ahead of me when it comes to understanding this senses stuff and you may have your own take on things which I and I think many other people would appreciate hearing. More about how to do that at the end of the podcast.
This week’s guest, Caroline, has a son who has auditory processing and sensory processing disorders. Now I’m sure Caroline wouldn’t claim to be an expert in either but certainly does a great job in explaining what these involved and also exactly how each of these impacts on her son’s life. This is a two-part episode and this week we talk about quite specific issues around her son, James’s diagnosis.
We start off with what is pretty intimidating to most of us, endless experts trying to figure out what’s going on but she says putting the puzzle of diagnosis together often helps make each day a bit easier because with understanding comes better strategies.
Caroline goes on to explain what auditory processing disorder is and how it impacted on her son’s life, particularly in relation to his schooling, so if your child is extra support the classroom, then the part where she talks about how the usual strategies of repeating teachers’ instructions was actually having a negative effect on James. You’ll find that really interesting.
Caroline also talks about sensory processing disorder and how that also impacted on James. Keep an ear out for the part where you suddenly realize that you actually filtered out much of what goes on around you every single day.
For me personally, also don’t know if my daughter has either of these disorders. She certainly hasn’t been diagnosed with them. My increased understanding of what these are and the whole thing around senses and how they impact on us has really changed the way how we react when she reacts.
Without going cliché on you, knowledge is power so I’m much more able to look below the surface at some of the things that happened when we travel by train, for example, which is a very stressing thing to her most of the time. So now, I’ve been able to look and think: Actually, that’s got to do with her senses and how she’s talking information in.
DEBRA: This week, we’re talking to Caroline who has a son with additional needs. Welcome, Caroline.
DEBRA: Tells us a little bit about your story?
CAROLINE: So, he was born and through the complications that happened we round up in Great Ormond Street intensive care. He had made a surgery, 18 days old. From there, we roller-coaster on to a variety of other sort of medical difficulties and things. His early life was really punctuated by consultant appointments and docs appointments and we used to bounce to the GP and then to the hospital for just about anything. Pretty much all we ever did.
And then, although the medical stuff grudgingly was easing up, James did go to school already furnished with a statement of special education need and he started his transfer 7 years ago in the Mainstream Primary. With a lot of difficulty and a lot of stress, I think over that period was really a sort of journey for us as parents of constantly being told “Okay, he’ll get there, he’ll get there” to eventually when he was in year 4, having a GP sit us down and say, “You do know we’re going to have a disabled adult coming here.” Well I think we just about work that out by then but hearing that was quite devastating. And it changes your focus and changes your perspective. And I sat in his annual review shortly after that and started talking about Where is he going? Is he gonna to get GCCs? What is gonna to happen? And they’re like “What you thinking about that? Why are you worried?” I must be thinking because I need to start financially planning now what his life gonna be like, how will we make sure that our provision now is going to equip him for what he needs later on?
And I saw a complete failure to meet his needs and gradually we unpicked that one piece at a very painful time and every time I sort of pull the thread, it was just more mess and we had to work very hard to get him diagnosed correctly. There’s no offer of rocking convenient label for James. He is very unusual and all of the different bits and pieces that are wrong with him end up form this great big long list and each one is one in ten thousand, one in a million. And when you start putting them together, you realize what an unusual child he is to cater for.
So, on the one hand, every time we found out some new piece about him, our whole life improves because actually sometimes we stumbled into the right handling anyway, other times, we haven’t had a clue what was upsetting him or what was the school difficulty. So actually, I’m picking out, Oh so that’s what’s wrong. Suddenly it makes sense how we could then cater meet that need. The more we added to it though, the more the schooling fell apart.
With James, yes, his top need is always going to be a very very complicated speech and language difficulty. He’s also a dyspraxic with all the organizational issues as well as fine and gross motor skills. He also has something called auditory processing disorder and it’s to do with the fact that his brain doesn’t handle noise input properly then he also has a very complicated sensory profile as well, sensory processing disorder. And that proved to be an awesome discovery because once we started on stand the world that he lived in and if there were things, simple things that we could do to ease that, we started to see his personality coming through.
Coming from a child who was initially nonverbal and very easily could descend into a crumpled heap in the corner on the floor to a child who could crack jokes was just life-changing for him. And that was our process of teaching ourselves about our child and yes, okay he’s unusual but I think every parent with an unusual child, you need to actually unpick it, you need to understand. And I had a lovely pediatrician who sat me down when I was a little annoyed and I said “Look, you know James has so medical appointments. His life is so destructive. Why do I need to get back there?” He was the one who sat me down and said “Because we need to understand him. Once we can diagnose him.” And I was a bit anti-labels and he was like “Well once we label things, what that means is that we can now understand what we need to do and then we can have that unto other people and break it down to small steps for them as to how they could help him.”
And so, it started to make sense because James in mainstream school will start every year in September with a new team, new teacher, new TA and quite frankly it was a complete wash out and a waste of time until Easter. When everyone just about figured out what we need to do to look after James. And I became increasingly assertive (I think that’s one word for it but anyway) about making sure that I met the new team and say “You know what he’s assign in reading” Handed them a what of his reports and paperwork which documented not any what was there but also broke it down into “Okay this is what you have to do” So with his auditory processing disorder, that was profound and it’s so under diagnosed, it’s ridiculous.
DEBRA: What is auditory processing disorder?
CAROLINE: What happens is the mechanism by which your ear hears were taught in school, taught by the bones and the signal going in and transferring through the eardrum into the liquid and then from the vibrations of the bones going into the auditory nerve. What they never teach you is what happens after that.
An auditory processing problem can only be diagnosed if the actual physical hearing of the ear is okay so we’re not dealing with a physical problem with the hearing, you’re dealing with what happens to that signal once it goes beyond that into the nerve to the brain. And the first thing you need to know is that it goes in as a waveform, an electrical waveform which you can sort of imagine as sort of a very complex sine wave and it gets stored in a memory buffer. And that memory buffer gives the brain chance to process it.
With the simplest form of auditory processing is where that very slow onward process so the memory is having to hold with that signal, the longer than it would in another person. Everybody has a slightly different one. It’s like there’s personal things, some people can process auditory information very quickly, other people a bit slower. With somebody with auditory processing disorder, something goes wrong at that stage. There are three different ways of looking at so what happens when another signal comes in, when a normal person, the next signal coming in would be stored another layer of that memories. There’s still a first signal their dealing within and getting rid of it. The next one’s kind of stuck underneath. With somebody with a problem that can go very wrong said the second signal comes in and it might want pound the first one, the second signal comes in and it gets lost because it’s still holding on to the first one.
Another scenario, the second signal comes in they mash up or they go wrong and you lose both. James, actually when they tested him, have that first scenario. So, in the classroom, when you brought it down to what in a classroom, James was equipped with an individual need’s assistant, who sit beside him, he was sat on a quiet corner of the classroom. He already has a sensory processing problem all the noise in that classroom is coming at him at once: that’s every child shuffling their feet, that’s every child moving a book. In a well-ordered classroom, there are still background noise that he couldn’t filter out.
And then you got the teacher talking. So, the teacher’s trying to deliver the input of the lesson and as they’re doing that, James is trying to listen, puzzle with sensory noise to the teacher’s words and he’s got the INA besides him who innocently said to him “Did you understand that?” or repeating it to him. Well with James, he was busy trying to process that input from over there when the second signal came in beside him only blocks both.
So, with James we learn through that diagnostic process, which I will say to absolute pushing to guess, that the way you have to handle James is not to keep questioning him. If he’s taking a minute to respond, you need to let him have a minute. He’s actually quite disconcerting so you’ll ask him something and then it still saying “James, do you hear me?” You must stay quiet. And that’s really hard and so basically up until that point, I think he was diagnosed in year six of that. Six and a half years of education that potentially speaking chunks of it have been lost through a well-meaning double check from the person who’s supposed to be helping him.
There’s no blame there. It wasn’t her fault. She was trying to do her job but nobody had picked up on that particular thing. I do think auditory processing disorders are supposed to be checked by speech and language therapist. It’s something that’s supposed to watch for and the doctor told me that it’s about one in thirty children actually can have some form auditory processing disorder. It’s not very well recognized. So, if you’ve got a child who’s not really coping in that way, it’s possibly one that’s worth looking at and just saying, “Can I have the scan test on my child?” Which is a very weird test where you sit with speech and language therapist and they put him through some sort of verbal assessment and they can score that and go “Is my child at risk of that or not?” James scored off the charts. But it took us til essentially year five til he was about ten for anybody to think to do that.
DEBRA: You mentioned sensory processing as well.
CAROLINE: Everybody has, (is taught in school) that we have five senses. Well, actual modern thinking, splits those senses off into fourteen senses. And the simplest way of thinking about it is when you break up your sense of touch; you’ve got sense of touch which is pressure, when you push in something your sense of touch which can pick up on sharp things and you’ve got a sense of touch which is actually heat so like you can actually without touching something you can feel the heat radiating off of it. Well that was not a sense of touch, that’s actually a sense of heat. You also have a couple of other ones that people never hear of which is to Stipula and Pre-perceptive which not very funny go Google them, it’s easier than me trying to explain that.
With James, the way his brain copes with his sensory inputs is disordered. When you’re a small baby, you’ve heard the thing about small babies and baby loan can see from the length of your elbow to the mother’s face and gradually as they grow up, their sensory awareness expands and they can start to see things further away, they can start to comprehend more about their environment and that goes look step what should good look step with the brain’s ability to process that information and filter out extraneous information. For instance, as you’re listening to this, you all possibly sitting down but I bet you until just mention this you’re not thinking about the Chevy you’re sitting on that is because your brain is receiving that information but is able to disregard it. Similarly, you’re probably not aware the feel of your shoes on your feet because your brain is going you know what, there’s nothing I need to know right there so I’m gonna just ignore them gonna buffer that over there.
Your brain does that the whole time. It’s a natural process through childhood to actually develop your sensory awareness as your ability to perceive the world and understand what you see goes hand in hand with disability to filter out what it doesn’t need to know and concentrate on the significant bits of the bits. It should be paying attention to but also being after a lot of dangers and things like that.
With a child with a sensory processing disorder, that’s how it states, so you can have children that are over sensitive to things and that they cannot filter out. You got children who are oversensitive to noise and so every loud noise will startle them and frighten them. A background above that white noise you get in a restaurant or in a crowd will overwhelm them because they can’t filter out.
You know you get children who are visually stimulated so if you take from somewhere that’s like a plane park or ballpark, there’s so many bright colors, so much movement, they come away completely hyper. The flip side of that is you can actually children who are all on the sensitive to stimuli so you get children whose attention wanes. They can’t maintain attention. They feel sleepy and they basically walk through a world where there is nothing really grabs their attention because the brain is not alert enough to the input.
So went up with what’s gonna sensory profile which tells you that you have an over sensitive hearing you have a slightly over sensitive individual but pay you’ll sense of touches on the sensitive maybe the sense of smell is over sensitive you end up with a very old profile with different senses come up at different ratings and you start to realize that the child walking through a very different world than you are. So, you go to something that you think we found for them or you try to go to a family event or just day-to-day life and you’re fine. And your child is having a meltdown beside you.
I saw this behavior throughout James’ life, didn’t understand what I was looking. And it took a brilliant OT, touches and pick us apart. She assessed James, she works how what was good, what was bad but the most important issue furnishes me with tools that we could use to help him. So, first things were like a sensory diet which were like exercises and it helps by using his body and his muscles. You can actually help his brain let go of some of that static that’s build up. And start to relax again and then he can kind of reset. And then the other thing we had was the therapeutic listening program which was extraordinary for us.
DEBRA: What did that involve?
CAROLINE: Once we’re out of town, once this OT works on how that James had a very unusual sensory profile and we discussed it and we tried a few things and few things were working. She then said “We’ve got this new thing in, it’s headphones. It’s a bit strange. We don’t know how effective it is, would you be willing to try it?” And I sat there with my body, tiger mom attitude and went “What is it gonna do for him and do I have to?” And she was like “You know, but I think it might work for him”. And she equipped us with a pair of fairly hefty headphones, a little mp3 player with a chip in and twice a day and we tried traded it up to half an hour twice a day over a week week and he had to listen to the noise. (I’m not gonna call it music I’m really sorry. I know technically, it’s supposed to be music but it’s not) This noise that was coming through these headphones and just generally move around. I mean, there are few roles like you couldn’t watch screens while he was on it, they did advise against sort of reading and things like this but generally move around if you want to put a letter that was okay because I’m that kind of person I’ve put headphones on myself and I thought him off after five minutes because I just found the music unbearable.
It’s been digitally altered to somehow impact on brain activity and this is why my science gives out. I don’t understand how it works. My husband tried it on and because he’s stubborn, he keeps on for a bit longer than me about ten minutes and end up with a migraine. So, I was pretty aware at that point that there was something very unusual about this music. It does sound like one minute it’s coming from front of you and then another strand of music will come up and it’s from behind you. There are tones in there that perhaps you wouldn’t only hear, because one-third of the chip was like the most song but I would say It’s not what other heard. So, you know, different type of music that came in these various programs of chips but they have different purposes. So, at the end of that first week, knowing what I was putting on my son twice a day, I had diligently done it and I followed the program and I tried to tie him up to half an hour and I could see no benefit and whatsoever. And I sat down with my OT which she came back to change the chip and I was like “Exactly why are we doing this to him? You know, I see no benefit.” I was a little assertive. And she said, “You know what, the first chip was a placebo because we just need to know that he could tolerate the headphones. I’m going to put an active chip in there, would you give it a go again?” I said “Okay, fine. Let’s do this again.”
So she put an active chip in there and I think we need to change the chip on a Tuesday and I remember that first active chip having gone from being completely skeptical because I couldn’t understand how sound could make a real impact on my child to by that Thursday, I rang her and said “You’re never taking this off of me” because I suddenly met my son. I had to take him to a physio appointment which was just outside of town and I was driving in a car on a Thursday morning and something happens, I think I said a rather bad word and I had this little voice from a back seat that said, “Mummy that was a bad word, wasn’t it?” And I said “Yes, dear, I’m really sorry about that. Please don’t ever say that word. Mummy shouldn’t have said that”. And he went, “But mummy, it can also be a descriptive word”. I literally take that double take of: Have I got the right child in the car? I couldn’t believe it was his voice. I couldn’t believe the words that were coming out from his mouth. He was calm, he was humorous and funny. We saw this wonderful personality come out because it was like it sliced the top layer of the stress away and this chip had enabled him to process sensory information and just get rid of it, I presume. The change was remarkable and as I said when the OT came back, I was saying again “This is amazing, this is incredible. It has made such a difference to him.” But I was a little worried because what we had noticed is that over the weekend, when he was supposed to take a break in this program, and over the weekend James would backslide. I was aware that the effects weren’t permanent and I’m not entirely clear and somebody who knows more about can tell me if there’s supposed to have a permanent ongoing effect or not, I don’t know. Perhaps it did and it was moldered but the actual effect while he was having this therapy was profound. So, the next chip should put in was equally funny but in a more slightly hysterical laughter kind of way because we changed on a Tuesday, Wednesday night, I put him to bed as normal but he couldn’t sleep. He basically became more proactive because the OT had picked up that some of his senses were under-active so she gave him a chip that was supposed to gear up those things and at 10 o’clock, he turned around me and said, “Mummy, why can’t I go to sleep? Can I try the sensory diet again?” and we had a really rough night and so when the OT came back that week, I did say and go ” No, not that one, thank you very much.” And after that, the chips that they’ve tried were less profound than their impact. And at the end of the 12-week program, I’m not exactly sure what happened but they did take it away from me. That although there was a lot of information online about it’s supposed to be delivered under the supervision of a qualified OT so it’s not something I can just go and buy. There have been other solutions that have worked really well. Its development is something that happens as they grow up; their ability to filter information does improve, even on a disorder situation. It’s improving as he gets older.
DEBRA: That’s the end of part one so the key takeaways: Try putting yourself in someone’s shoes and I almost mean, literally. Feel what the shoes actually feel like. Think about how we actually filter out so much around us and what it must be like not to be able to do that very effectively.
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