Deafblind Insights - David Brown
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David Brown
Education Specialist, California Deaf-Blind Services

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David Brown: A long time ago in the- in the deafblind field... I was told that deafblind education is about three basic things; and it's kind of a joke; communication, communication, communication. And I was never very comfortable with that, because I-- my perception was the people were jumping in too quickly with children... to teach them about communication and about language. And they didn't seem to be spending an awful lot of time stepping back and observing the children. And that was turning out to be my main contribution to each child that I went out to see, whether it was in a home, or in a school. And it was only a couple of years ago that I had an 'aha' moment when I thought, 'Well, we could say it's about three kinds of communication.' 

But the first one would be the child's brain communicating with the child's body, which might sound a little bit odd. But we have to remember that the only way the brain knows anything is because of information coming to it through the senses. And if that information is missing, or fragmented, or very slow, then the brain isn't getting a very good connection with the body. And we are hoping that children will tune in to the people around them and the environment around them. But if the brain doesn't feel connected with the body effectively, it's programmed to do some things to get that connection more strongly established, because there's a deep need for postural security, and that need overrides almost everything else; except the need to maintain an open in airway, which produces an even stronger rush of adrenaline to- to solve the problem out; if it feels as if the airway will be compromised in some way.

I learnt this mainly from children with CHARGE syndrome, because they are the most multi-sensory impaired group, I think, of all the groups we work with. But... then, from what I've learnt with them, I've seen other children with deafblindness, with other etiologies, following exactly the same pattern. And the big issue for the children I think is that there's problems with the vestibular and proprioceptive senses, which is why I talk about those two sense systems, so much. They they didn't really feature much in the field of deafblind education. 

And I was aware that PT's and OT's knew about them, but they didn't understand how important those sensory systems were for attention and learning, because their therapists. They're thinking more about their very narrow... specialists fields, and the developmental areas that they are traditionally associated with.

And once I put that together. as my way of interpreting those behaviors, it really helped me see those behaviors more and more, and realize that it wasn't just the children with CHARGE syndrome, it was children who were deafbblind, because of extreme prematurity, it was children who had severe meningitis infection, but it survived the infection, children who had birth anoxia, and all kinds of other etiologies. You can see the same patterns of behavior, where these children are trying to get their brain in better connection with the body. And when I go into classrooms and observe children who've developed, quite a long way, and may even be doing some quite academic curriculum. The people are not really-- the staff are not really addressing the child's need to confirm their postural security, before the brain attends to the lesson that's been planned for them. And maybe there's large print, or maybe there's strong color contrast. So, adaptations and modifications have been made, but they haven't really addressed the child's postural security. 

And they know the child is perfectly safe, but the child, themselves, their brain doesn't know that they're safe. That brain is going to keep saying, "I need to get safe. I need to know I'm safe." So, the children are very often on a regular chair, at a regular-- it might be child sized, but it's a regular chair at a regular table. Maybe if the child's feet were on the floor, or on a foot rest. Maybe if there were armrests. Maybe if the table was close enough for them to put their arms and their elbows on. Or maybe if they were in an entirely different position, that would give the brain the satisfaction of knowing, better, where their brain is-- where their body is, and that it was secure, and then the brain is freed up to attend to what's happening outside the body space.

The receptor are based all through the muscles and joints in the body, and they're stimulated by compression, and stretching, and twisting. And anything that puts pressure on any part of your body, or stretches it, or twists it, is going to fire messages to the brain that that is what's happening to that part of your body, if you're pro perceptive sense works well. 

If you have also have vestibular issues, youre not going to be able to resist gravity, and the vestibular sense has a key role in developing normal range of muscle tone. And unless there's cerebral palsy, most children with damage vestibular systems tend to have very low muscle tone. They're very floppy, and they like to be on the floor. They want to be horizontal. They kind of melt into the floor to minimize the threat of gravity, which is both scary, in terms of postural insecurity, but its also bloody hard work, you know, to resist gravity when all this is damaged and not working. And we-- like I say we can't simulate that. So, it's very hard to understand just how much work it takes, and also how much attention it takes from other things to keep resisting gravity safely. 

So, if the muscle tone doesn't have a normal range to it, the proprioceptive sense it's not going to work properly. And if the muscles are too tight, like in severe, cerebral palsy with severe spasticity, or if they're very sloppy, which is also a kind of cerebral palsy, in some cases, but it might be a response to lack of motivation, because of low vision, profound hearing loss, damage vestibular sense, breathing issues, poor- poor absorption of food, so that energy levels are down, postural insecurity. 

There are many many reasons why children might not be developing a good range of muscle tone. And it's not used. Like all our sensory systems, the proprioceptive-- the receptors and the pathways have to be used. There has to be stimulation coming through it in order for it to develop and survive. And we know from, you know, horrible experiments on newborn animals. Like, if you if you raise a newborn in total darkness for 12 months, the visual sense atrophies and dies, and nothing's happened to it, except it hasn't been used. There's been no stimulation, and it's just withered away and died. So, lack of use is another problem with that proprioceptive thing, which is why regular movement is important. 

Thirty years ago, someone in England told me, and it was an 'aha' moment, children self stimulate, in the beginning, to keep the brain occupied, because brains need to be-- they have a deep need to be occupied. And for many years I went with that... as my understanding of why they begin to self stimulate. And then I started to realize, it's a little more pointed than that, there's a-- it's more goal oriented than just giving the brain something to attend to. And often it's- it's to confirm where the body is to the brain.

The problem with self-stem is-- it's a- it's a dirty word, you know. It's seen as bad. And the people who come up to me, in school settings, and say, "She just self stems all the time." And often they're wearing something like this, and as they're talking to me, they're doing this, or they're twirling their hair 'round their finger, or they're just going from foot to foot, you know. And they're stimulating like crazy, but they're complaining about it in the child, because they don't know they're self stimulating. Because they see it as something kids with disabilities do, but normal people, like them, don't do it. 

So, I always say-- I go back to you know how important self stimulation is. How we all do it, for all sorts of reasons. And how the children-- when you look at what they're doing, all by themselves, with nobody intervening... how skillfully they experiment with their bodies, to find the kinds of things that give their brain the things that their brain needs. Things like crossing the limbs, maybe very tightly, in some really very complex ways. A classic is bringing bringing one knee up and then bringing the other ankle upon the knee. This is done with incredible precision. It isn't just like, plunk! It's like get it in exactly the right place... where it works. They squeeze into tight spaces. They use rhythmic movement, which gives really, really strong proprioceptive and also tactile-- but the key is the proprioceptive input to the brain, so that the brain knows the lower body is fixed, it's safe, every thing's okay, you can think about something else, now.

The children with CHARGE, for example, and children with Ushers's Type 1, and Wallenberg Syndrome, they have very, very high incidence of vestibular dysfunction. And unfortunately, it's impossible for us to understand what that means, if it's not working. We can't simulate missing vestibular function. We can- we can make ourselves dizzy, and people think that represents what it's like, but that is over-stimulation of the system. These are children who probably never get dizzy, because there's nothing to over-stimulate. So, a question that's often in the- in the brain is, 'Where is my head.' And many of the behaviors you see, that come under the self stimulation label, I think are the child's self- self-discovered strategies to tell the brain where the head is.

A dad wrote me, in California. Someone I've never met. A couple of days ago. His son is nearly five. He still has a pacifier. All the professional team are on his back, trying to get him to give up the pacifier. He doesn't want to. It's especially important to him when he goes to bed at night to get to sleep. And the dad wrote me, and said, "I don't-- his mom and I don't have a problem with the pacifier. Can you tell us what you think?" And I said, "Well, I don't know him, but he's got CHARGE syndrome. He's got major vestibular issues." I've got photos of him, that they've posted, showing many of these behaviors that I'm describing. And I think a lot of the oral stimulation behaviors are a way of giving the brain information about where the head is. So, jaw clenching, teeth grinding, biting on objects, sucking on objects, all those-- head weaving is another one, binding the head with string or rubber bands, getting a hat that's perhaps a little too small, and pulling it as far down as you can get it on the head, till the head is wedged into the hat. All those behaviors, I think, begin as ways of telling the the brain where the head is, because it's a primal need. 

That's the point, all the time. This overrides things like looking, and listening... and visually directed reach, and all the things we're wanting the children to demonstrate when we're teaching. Those things aren't as urgent to the brain as answering that question, "Where's my head?" 

The kids learn the hard way. If you stand, and you fall, if you don't have a good vestibular sense, you don't have protective reflexes, because they're usually triggered by the vestibular system. So you're not able to reach out and protect yourself, or do this if you fall backwards. And the thing that hits the floor last, is moving the quickest, which is your head, and it cracks into the floor. And if you make those children "sit properly," as people say, you often-- you have the luxury, like me, of just observing, you often see the child's attention goes off, and you can see their stress levels go up, because then they start to move around a lot more. There might be some hand flapping. Their visual attention goes off from the eyes not wandering around. They- they may be head-weaving. You see a whole range of behaviors that, to me, indicate they've lost that sense of security, now, in their own bodies. So, they're stressed. 

And if you could just tolerate that sitting behavior, and accept that it has a specific function, and that function, very often, is freeing the brain to attend to what's happening outside the body. If we can learn ways from the child to get their brain in better contact with their body, before we teach, I think how teaching becomes most successful. And I've seen this work in schools, when I've gone in and talked about this, and then we tried it while I'm there. And it might be a... rest time. It might be some deep pressure massage. It might be some, really, quite intense physical activity, like jumping, or some spinning. And all those kinds of behaviors may well get the child in a more available position for looking, and listening, and touching, and feeling, and doing all the things we want them to do in order to learn. 

I know a girl who got to a level, in California-- got to a level at 14 where the staff in school could see that she was getting a little bit hyper, and could go over and point out that she was... stamping of feet, or she was rocking side to side much more... violently, than- than she normally did. And they could say to her, "What do you need to do?" And she actually said, "Calm down." And it was like a major milestone. And then what she did was go get a Koosh ball, and sit at a desk and just flip this Koosh ball around. And the teacher said you could almost see and hear the energy just flooding out of her as she came back to a much more normal level of arousal, ready for more... more learning in the classroom. 

There's always this reluctance to look at what children do, all by themselves. This idea that education is-- we have to do things to them, all the time. And it's... jumping the gun, it's jumping way, way ahead. 

Many of these behaviors you see in children, who are not yet weight bearing, or they're not doing it with confidence, and they're certainly no where near walking, independent walking. And... and I always say, "None of our- none of our students walks at the wrong time. They all walk at exactly the right moment." It's miraculous! Because each of them knows when the moment is right, and then they walk. And you can push, and pull, and coax, and threaten, and do everything, but they will do it when the moment is right. And it takes a lot of faith, especially by the time the four or five or seven. But-- some of the children never walk for various reasons, but most of them do. And of course a lot of the children use walkers. And there's always that feeling, "Well they're a bit stigmatizing, you know, we should get him walking independently." And I just think, you know, can't you focus on other things, because he's going to walk at just the right moment. We don't have any doubt about that in most cases. 

And back to the three kinds of communication. The first one is the brain communicating with the body. Once that's in place, on some level, the brain is freed up, so that the second communication, which is the social communication with another person, who's usually a... significant other, or someone with the special relationship. And then they, with that relationship, they manipulate and use that relationship to bring the child to the third level of communication, which is with the wider world. Whether it's the social circle, widening, or the inanimate world and, you know, orientation and mobility, and going out into the world. And you may need to keep checking that the first kind of communication is okay, before you start working on the second level.

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