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Note From The Host:

Episode 6 of The Brain Possible Podcast is officially live! The Brain Possible podcast shares the inspirational stories of parents and caregivers–as well as interviews with doctors, authors, leading thinkers, and paradigm-shifters in the realm of pediatric health and wellness–all in an effort to change the conversation around childhood brain injury from limitations to possibilities.

We’re so pleased to bring you our latest episode, which features The Brain Possible’s CEO and Founder, Emily Abbott, having a conversation with Co-Director of the Family Hope Center, Carol J. Newell.

Carol J. Newel has traveled and lectured internationally on all phases of brain development. She has been teaching, guiding, and counseling parents of both neurotypical and special needs children for over 35 years. Her knowledge and training is extensive, highlighting full sensory integration – including visual stimulation/development and auditory processing, SoListen/Tomatis, Fast ForWord, language development, sign language, reading, emotional and social development, ABA (Applied Behavior Analysis) and RDI (Relationship Development Intervention). She has also completed a 2-year fellowship course in infant-parent mental health at the University of Massachusetts, Boston. Carol leads and mentors her specialized clinical team to educate parents to improve the overall development for their child.

Carol notes, “When you have a child with special needs and they have difficulties, they can’t learn as quickly as neurotypical children. So we have to break skills down for them, and therefore parents also have to learn how to break down those skills and how to intervene and support them in a way that they can learn.”

In this episode, Emily Abbott, and Carol Newell discuss how the Family Hope Center gives parents and children just that — hope. Listen to the podcast here to find out more about Carol’s work with children with cortical visual impairment, autism, ADHD, mental health conditions, and dyslexia.

You can also read Emily’s interview with Carol in the podcast transcript below.

Carol:

I’ve always worked with special needs children. It’s always been my passion. I grew up with a cousin who actually was born prematurely and was blind as a result of that and had a lot of learning problems and challenges, and always just loved being with children. So, I spent a lot of my teen years and early part of my education being with special needs children whenever I could. But I also spent time learning what well development is. It was really important to know how a child should be developing. So, I spent a lot of time in early childhood education and a lot of my career has been, certainly when I had my own children, I was with them and also worked in many different organizations, or for schools, or for preschools.

I had a good amount of opportunity to be with well children and to know what well development was, but also to always be open to having special needs children in my classroom or in the group of children that I was with. Matthew and I met working in the field with children with special needs. And we both decided, almost 20 years ago now, that we wanted to start our own clinic because we had learned a lot ourselves, and there were very particular things that we wanted to bring to families with children with special needs. We saw that a lot of the time, parents, obviously when you have a child who has challenges, and two of my children had difficulties in learning and difficulties in various ways, neurologically as well.

And certainly, we want the best for our children and we’re always going to be focused and committed to trying to improve our children, right? And help them to be the best that they can be. But we also saw the great need for supporting the parents as well. And we wanted to bring that into our clinic, that you can’t heal a child without being able to heal the parents as well. So to be able to meet the parents with their desire and their passion to heal their children and work with their children, and then to be able to help and support the parents so that they can do that — and they could be the best that they could be — that was really important to us.

And we saw a lot of parents and mothers over the many, many years that we’ve been working or decades we’ve been working, where mothers really struggle emotionally and fathers struggle emotionally in different ways. And to be able to understand when a parent has those kinds of struggles, and that we can’t just do therapy at that time for the child and say, okay, we’ve got to do this many times a day or whatever it might be. We also need to be able to help the parents to support them, to know what they need to do so that they can then do the best for their child when it comes to therapy or just daily living. That’s really important.

Emily:

That’s really interesting and that’s fantastic. I love to hear that. I have another episode next week just to talk to someone about the importance of yoga and meditation in helping parents to give them the permission to feel. I think self-care is really important for the parents. How do you support them, when you see that they’re struggling? What kinds of things are you sharing with them?

Carol:

Okay. Good question. Well, obviously just like each child that we see it, the plan that we create for the child is very individualized. The parents too, some parents are doing fine and everything is just… they’re doing great. We all go through emotional stages and emotional pieces throughout our lifetime. And we see that, when parents are first seeing that their children have challenges and have problems, that right there creates some kind of upset, sometimes for some parents, it’s trauma, because they might have spent long periods of time in the hospital with their child. Their child might have had a traumatic incident. Even while our parents are on the program, the children that work can often have traumatic incidents. They get hospitalized suddenly with an illness or they get hospitalized with a seizure, or something happens that creates a difficult moment in time.

And each parent will take that on in a different way and will process it in a different way. Just like you were saying, you need to have permission to be able to see that you might want to be the strongest you can be and be the best you can be. But to be able to admit the fact and say, this shook me, this particular incident shook me or my child being in the hospital for a long period of time… I thought I was doing okay and I tried to keep to a routine and I did everything I could, but I realized I was holding it together during that time. And now I’m through that stage, you realize that you need to take some time for yourself and to admit the fact that and see that you’re saddened by certain things that are going on. You can have disappointment.

We have dreams as mothers, right? We have this dream to have this perfect life and the world puts out this beautiful picture of what it’s going to be like to be a mother, but the reality is not like that. Even for mothers of children who don’t have neurological challenges, that’s not necessarily the reality. And our dreams get dashed often, or we get disappointed and expectations that we have don’t happen. And when you have a child with challenges, you have to make choices. So many times I had to make choices not to do things with my girls. So, social things would have been great if they were neurologically doing well, but they needed to be working on their program, they needed to be doing things that were going to change their brains, because in the long run, they needed to be the best that they could be.

And if I took time to do some of those, what I considered fun things to do and we did as much, obviously as we could, but our balanced changed, the balance of how much time we put into working with them and healing their brains was certainly more on that side and less on the side of going to museums every week or doing fun things that I had wanted to do with them. We did less of those things, we had to put it in more perspective of, what do they need? If you can’t read and you’re a teenager, that’s not going to help you get through high school, you’re not going to be able to get to college. So you have to be able to focus on the things that your child needs the most at that time.

Emily:

Since you’re diving into the topic of your children, I remember the stories from your parent training. Can you share with our listeners, if you’re open to it? Can you share the stories about your girls?

Carol:

Certainly, certainly. So, our first child was a boy, and he was well and did very well and learned very quickly, had great language, and was neurologically what you would consider neurotypical. Our second child seemed to start out pretty well, she had a good start in life, and then when she was probably about three to four months old, she had an incident where she just lost neurological gains. We saw it happen, we saw the challenges that she was having, and we saw her unravel as it were before us, and we knew that her brain had been affected. We saw her eye turn in, we saw her hand get really tight on one side. She’d already started moving and crawling.

She couldn’t crawl in a straight line anymore, she was crawling crooked. She actually stopped crawling for a few days and didn’t move nearly as much as she had been moving. So it was pretty devastating to us, but knowing the brain, we could see it. So we felt, okay, at least we can see the challenges that she’s having, and when we felt blessed knowing that there was a neurological problem, but at least we knew what to do. So we started working on her brain right away. And what basically happened to her was that every stage of development that she got to was a delay. She either got stuck for a while, or she was very slow going through the stages of development. So, unlike her brother who had excellent language at a very young age, she had a fair amount of words, but not as much as typical kids.

And I had to be her translator because she couldn’t understand what she was saying. And once her language got clear, you couldn’t understand what the topic was. She went out to a friend’s house at six or seven and then came home and tried to tell me what she’d done or tell me about a movie. I couldn’t figure out what she was trying to tell me. You had to be there with her to experience it, to know what was she talking about? She’d go around in circles with her language and pull little pieces in, but it was very disorganized and she had a lot of problems with memory. She would ask the same question again and again, and if you taught her something, she wouldn’t be able to remember it. She had problems with delays in general.

So, she was great physically, she kept up with her peers in what she could do physically, but when she went to little ballet classes and dance classes, she’d be one step behind everybody else, or the other children would have already moved on by the time she would do whatever it was the teacher had wanted her to do. So her processing was slow. As I said, everything was delayed. Once we got to reading and learning, there were great difficulties with reading, learning, all subjects. She couldn’t read her name when she was six, seven years of age. So we worked very hard with her for quite a few years, she came through it. She did really well, she went to college, she became an occupational therapist.

She actually went as far as getting her doctorate in occupational therapy and has a great job working in Lucile Packard, which is a children’s hospital in California, and now works with her children herself. So having been herself, she knows what it’s like, that gives you empathy when you’ve been through challenges yourself. So that was our first girl.

Our second one was adopted and struggled also with learning in a different way. It was certainly a different process. She struggled with reading, she struggled with being able to hear sounds, she was very bothered by sound, her auditory pathway and some of her sensory pathways — she was very overloaded in the sensory areas. So, she struggled with that a lot. We had to work on her sensory side and behavior was quite difficult for her.

She was really challenged with knowing right from wrong, and being able to have empathy. And a lot of children who are adopted really do struggle with the social challenges and emotional challenges. We knew at the time, when we adopted her, that they were being more careful and more gradual about bringing a baby into a home. And she was five months of age, so we were her third or fourth set of parents. And a baby is traumatized by being moved, even though she moved from happy places, she was still moved from one place to another. So the ability for children who are adopted to attach to their permanent parents can be difficult. And it creates disruption in the brain, which we saw with her and we see with many of our children who are adopted. It’s a process to be able to heal the brain, to be able to have them be able to attach and emotionally be able to be well-regulated.

So she had a lot of difficulties being regulated and not having tantrums. She had many more tantrums than the other two and found it difficult to connect, and had many ups and downs emotionally that would happen to her, not necessarily throughout the day, but throughout the week. She could have periods of time where she could be looking really sad and being very sad, not consciously sad, but just her mood would be that way. Again, she’s a happy, well-adjusted young adult now. So, again, working on her brain for the long haul was something that she needed us to do with her. At the Family Hope Center we have a developmental chart that we use, it’s our own chart that we use.

It’s an integrative developmental progression chart, and we measure each part of the brain. So when it comes to sensory, we’re looking at how the child is doing in the sensory area of vision. How are they doing the sensory area of hearing? How are they doing in the sensory area of tactile? And we also look at the smell pathway, which is really important. So we look at those four sensory areas and we teach parents how to assess where their child is, in each of those areas, which is really important, because the first thing you need to know is where is your child in reference to the way they should be? Quite often, you see behaviors coming out with children that often parents think, ‘Oh, my child’s got a behavior problem, they don’t behave well when they’re out with lots of people, or they don’t behave well in certain situations.’

And it comes across because the child displays it in behavior. But the reality is, it’s something going on in the sensory areas. So, for example, a child might not behave well in a social setting when there’s a lot of people around, at a birthday party, because there are lots of children and there’s lots of noise. Some children will be bothered by the fact that noise is suddenly coming at them, and the sudden little pieces of noise bother them, or some children are bothered by the overall sound of just the cacophony of the sounds that are going on in the room and some can’t filter out the background noise, and therefore they can’t play with one child, because they can’t manage the background noises. So, identifying which of those issues are going on, then helps us to decide on what the most important treatments are for the child in regards to, ‘how do we stimulate?’

‘What do we stimulate with? Are we stimulating to help the child to manage sudden sounds?’ That’s one type of stimulation. Or are we stimulating because they can’t manage lots of sounds or specific sounds? Sometimes they’re specific sounds that children become completely upset by, like lawn mowers or vacuum cleaners or mechanical things. So once you know what it is, you can stimulate that specific sound and desensitize for the child over time. Once we’re addressing the brain, we desensitize for those particular sounds by stimulating. Usually, specifically with that sound, there are other treatments that we have. There’s a variety of different hierarchy of treatments for the auditory pathway, the visual pathway. The tactile pathway is important because children who don’t like touch, then they don’t like to be near other children.

‘Don’t get near me, because you might touch me.’ They might be bothered by the close proximity of another child or just another person touching them — an adult touches them and then they get upset. Once you identify, okay, that they don’t like some of those things and what does make them comfortable, then you can obviously adjust what you’re doing, but also stimulate, so that the child can move through that over-sensitivity, which gets in the way of them being able to be integrated into a social setting.

Emily:

If they don’t like certain textures and touching, explain what you meant? I remember my son actually had the startle. I guess that can present itself in so many different ways, but for him, he had that startle every time he heard noises. And I remember you had me do different exercises or things with him at home, with different types of sounds and different types of textures on his skin. Can you share a little bit about those programs?

Carol:

Yes, yes. Definitely. So, identifying whether it’s a certain sound that bothers them, so a child who would be bothered by certain sounds, we would start the stimulation, where we’d be making sounds, but we’d be working to make sure they were gentle to begin with. We wouldn’t be too strong, because then you’d be traumatizing the child. And if they’re bothered, sometimes children really hate soft sensation. So mom goes to wash them or change their diaper and clean them, and they just get aggravated by those sensations. So, then we will stimulate with those sensations specifically, but in very small doses and very frequently, rather than just, ‘okay, let’s just get over it,’ because what you tend to do as a parent is to get through the diaper change as quickly as you can because the child doesn’t like that touch and doesn’t like that texture, or the face washing, because they don’t like their face being washed.

A typically-developing child will typically not like to be cleaned up, but when they go through that in a short period of time, they get used to the idea, ‘Okay, this is part of life.’ And that oversensitivity passes, but a child who gets stuck there, they don’t like that at all. And they don’t like to be touched. So, then we would stimulate with a soft cloth across their face, but just a little touch, and then we stop. And then we might do it another time, a little touch. So it’s the frequency by which we do things, and then we build up the duration over time. It desensitizes the brain just adjusts and says, ‘Oh, this is actually okay.’

Emily:

I remember when we were in the parent training course. I don’t know if you had crayons or if you just asked about smelling a crayon and the memories that come up. So, would you share a little bit about that? It’s fascinating.

Carol:

Actually, we do have crayons, and it used to be that we’d have everybody have a smell of a crayon, because it would bring back the memory. If you smell things, you remember things, and we would have everybody in the audience, take one out of a bag and smell it and say, what do you remember? And you remember things from your childhood. They’re not making crayons with that smell so much anymore. So it’s hard for us to find those crayons. But making the point though that if you smell something, it can trigger a memory. I’m English, and when I go back home and the soap that I use at my home, you can buy the same brand of soap here in the US, but it doesn’t smell the same.

There’s something about smells in your own home or different brands of things. And it’s interesting because when I travel, I notice the difference. You notice different smells, and you notice that people have different types of things that make them feel good in different countries, and different smells and some things that we might not be particularly excited about with certain foods or certain smells, other people will love. If you didn’t grow up on a farm, maybe you don’t like the smell of manure, but if you grew up on a farm, and now you live in the city, you go back to the farm and you remember riding a horse, or helping your father, or whatever it might be. We remember things from our childhood based on smells and experiences that we’ve had.

Emily:

What’s the connection there?

Carol:

So, the connection there, I mean, actually goes back to, we go right to the root and think about adopted children and our daughter who was adopted. When you’re born, the first thing that you do is, you connect to your parent. You smell your parent, and you can smell your mother right there at birth. And they’ve done studies where they’ll take a piece of cotton and they’ll rub it on the mother, and then take another piece of cotton, rub it on somebody else and then blow air in the baby’s crib on one side and see which side do they turn, and they turn towards the smell of the air that’s blowing the smell of their mother.

So, we know that babies connect instantly to mother at birth, so long as that part of their brain is functioning. And if a baby then is, therefore, taken away from their mother, sometimes our babies, many of the babies we see are born out in trauma and they have to be rushed off to the NICU because that’s the only safe place for them, but they don’t get that opportunity to bond and really connect to the smell of their mother. And it happens with children who are adopted as well, they get taken away from their mother, and they don’t have that connection.

The sense of smell routes right into the amygdala, which then routes to the hippocampus. So the amygdala is our sense of smell, and the hippocampus and the limbic brain are all connected. So memory is connected with our sense of smell, short-term memory, and long term memories, because we can remember things from the past, and if we’re well connected, and that part of our brain is not overly sensitive or unduly sensitive, then we can develop emotionally well. When we don’t have that connection, then we find that we stimulate children to be able to smell, to be able to connect to that part of that brain, and stimulate that part of their brain, and it helps them emotionally. So, any children who have difficulties with their emotions or with memory, stimulating with a sense of smell, really, really helps them.

Emily:

And how do you do that?

Carol:

A typical session would be about three smells, we would present to the child. We would take three smells. We’d just give them the opportunity to just smell it. We leave the smell there longer for children who don’t smell it right away. We would use stronger smells for children who don’t get that sense right away. We would use a smell that would be a little bit more gentle and mild because some children are over-sensitive, so we have to be very careful. We don’t want to stick something right under our child’s nose if they’re bothered by it. So we come in gradually and slowly and let them smell and see, okay, is this an over-sensitive child’s or under-sensitive?

And then now they need a little bit more distance. Some children can’t manage three smells, and they start to shut down or they start to overreact. So, then we just do one smell at a time. A typical session is three, but we will do more or less based on how the child is responding. And we have to watch over time. A mother recently told me that she had started to do the smells — this was someone who recently took one of our classes but hadn’t yet taken the class and had started to do some smells with her child because she’d heard it was good. And she said, ‘my child still seems to be having some dysregulation about two hours after I do a smell session.’ So, sometimes you can have an oversensitivity to the degree that it can be disruptive to your sensory pathway. In which case, then we have to say, okay, well let’s just do one smell for right now. We do one and we build up gradually and watch the child’s reaction.

Emily:

With Carter, you had me do smells and tastes. Do you not always have them paired together?

Carol:

We don’t always. It depends. If the child’s already eating, so if we have a child who’s already eating and doing well, then it’s not necessary to do the tastes. For the younger children who are not yet eating and who we want to stimulate that pathway as well, then we do the taste as well, and we do smells and tastes. We find that children who are very dull in that pathway will often respond to the taste before they start to respond to the smell because some children are not responding to those smells at all. Many children don’t respond to bad smells, so we also include healthy bad smells. Not a chemical that’s going to hurt them in any way, but something that just doesn’t smell pleasant. We’ll use fish food, or something like that, or give them exposure to something that maybe went bad, a piece of food that went bad, and make sure they have that ability to pull away from something that’s unpleasant.

Because if you don’t, that’s something, an alarm bell for mom to watch out for because this child might eat something that is not healthy for them because they don’t smell that unpleasantness of the smell. So, certainly for children with eating challenges or children who are not yet eating, quite a few of our children are tube-fed, so we need to do tastes with them because they need to smell the food and taste the food, even if they’re eating through a tube because we need to tell the body and the brain, your food’s coming and you need to get ready.

Emily:

Well, okay. So I want to ask, that isn’t one of my questions, but you talked about tube feeding, I imagine, I know when we went through your program and we brought Carter, we had a session with your nutritionist. To me, it’s very obvious that every child is clearly very different and going to have a different protocol, but one thing that I believe I’ve heard many times is, people think that what their allopathic doctor tells them, that they put this formula in the tube and they don’t put real foods in there. So can you share a bit about what you guys recommend in helping to try and shift that thought process and get the children getting nutrition in their bodies, even through a tube?

Carol:

Yeah, certainly. We see children or adults even, who were eating full meals and they get in a car accident and now they’re being tube fed and they’re on formula and it’s not enough to sustain you. So, certainly, there’s a time and a place when tube feeding with formula might be necessary and very specific formulas for certain illnesses or certain things that are going on with children. It’s important maybe when someone is hospitalized for a short period of time, but for the long haul, it’s not sustainable and it’s definitely not good for brain development. So as soon as possible our goal and objective is always to get children onto real food.

And even if they can’t eat because they might aspirate, we will, as you say, yes, we work towards getting good, healthy, nutritious food through the tube. So we work with nutritionists and doctors where their expertise is nutrition, and they will guide the parents to moving away from the formula and moving onto the food. And then from the sensory standpoint, I’ll work along with those families and those children as well, so that we can at least be doing tastes and smells. They may not be able to take food through their mouth yet, but they will do tastes and smells of the foods that they’re having, that’s really, really important.

Emily:

I know that you work with a lot of children with behavioral issues and autism, ADD, cortical vision impairment, and dyslexia. Can you share a little bit about the programs that you do like Fast Forward and… I don’t know very much about SoListen, I’d love to learn about those.

Carol:

Sure. Certainly. Okay. So, yes, one of my expertise is in learning and in social development. And so if we look just at children who have learning challenges, there is a process that we go through with them. So as I said, the first thing we do, is we look at the sensory areas and we see what sensory areas are getting in the way of a child not learning. So when we evaluate the children and we teach the parents to look out for this, in the vision, you need to be able to track with your vision. You need to use your eyes well together, and if you have challenges in vision, and you might be able to see absolutely fine, not have any diagnoses of Cortical Visual Impairment or anything, but if you can’t use your eyes well in a coordinated fashion, then reading becomes problematic.

Also, part of reading is the language, and it’s the way we hear our language. So, children who have over-sensitivity to sounds and don’t hear the sounds in language well, then the first thing we identify is, let’s identify what sounds the child can and cannot hear and where what’s going on in the auditory pathway because if that pathway is not happy in processing sounds in daily life, they’re most likely not processing sounds in language either. And therefore, that’s going to get in the way of their language and their ability to be able to hear defined sounds, and it will then affect them to be able to see those letters and make the correlation between the letters and the sounds. So, you’ve got to have those things working on their own and working then in integration with each other. So, we look at each part of the sensory area that’s going to get in the way, and we stimulate for that.

When it comes to different programs that we use, we obviously work on the visual pathway while making sure that we’re working on physical programs and breathing programs help with the visual pathway. From an auditory standpoint, we first work on hearing the sounds in daily life, and then if the child is still struggling and they’re not picking up on the language well, then we’ll look at the more sophisticated programs. We use a program called EASe, which is an auditory listening program, which desensitizes to environmental sounds and helps children to filter better if they can’t filter well. If they’re hearing too much background noise, then it’s hard for them to focus on what they’re learning. And then we move on to SoListen.

SoListen is a program that is Tomatis-based. So, Tomatis was an audiologist who worked with children who had neurological difficulties, working on the auditory pathway. And it’s a program that’s used by many clinicians now across the world.

Emily:

For auditory processing?

Carol:

Auditory processing. Yes. So, there are different listening programs that you can do with the Tomatis programs. And you can work on focusing on desensitizing to sounds, working on background sounds, focusing on language. So, the sounds and the music that children will listen to through this auditory program helps them to process the sounds with better timing, hear the sounds in daily life. When we see a direct relationship between the responses that we get with language that changes, we see children who are calmer, so it will often affect their emotions because — and I’m sure that’s because their sensitivity to the sensory input starts to become more regulated — therefore their emotions become more regulated as well.

So, the program is tailor-made for each child. There are some basic programs with the

Tomatis program that you start out with, and then you tailor it based on what’s going on. If the children are under a lot of stress, they might be listening to sounds that help them to emotionally regulate more. If they’re more on the side of language, then we’ll tailor it towards language or listening skills. So focus and attention is another area that we listen to. The SoListen program lasts for usually about 13, 14 days, period of time, that the children go through this and they listen to the music and the sounds for about two hours a day, not necessarily two hours straight, but in chunks of time.

And then we usually will take a break for at least three to six months. What happens in the brain, is that, as the brain is being stimulated with this, then we need to have life experience for things to become totally integrated. So, we don’t usually do too much more than two weeks, that’s enough and that’s what’s recommended and what most clinics will do when they’re using the SoListen and Tomatis based programs. And then for children who have learning problems and reading problems, Fast ForWord, you had mentioned, that’s another program that we will also work with children. And that’s for children who have the ability to work on the computer, it’s a computer-based program, you have to respond to it. So the children will listen to different sounds and then they have to respond based on what they’ve heard.

So they might hear a series of sounds that, two sounds go, beep, beep or one sound goes, boop. So they hit beep, beep, boop. And then they have to say, “I had two up sounds and one down sound.” And they’ll use the arrow keys to show what they’ve heard. And it programs the brain to hear the difference in those sounds, also some of the exercises increase the speed by which children hear sounds because they found with many children who’ve been labeled with dyslexia, the process by which they hear sounds, for example, we hear the sound dog and we process that in about 40 milliseconds pretty fast. And it’s one of the fastest things our brains actually do, which is to hear a word and process it. They’ve done studies with children who have the label of dyslexia and or reading problems, learning problems and find that they process those sounds in about 150 milliseconds.

So, 150 compared to 40, that’s a huge difference in the speed by which those children are processing sounds. And they look like they’re hearing fine and understanding fine. And yet that delay in their auditory pathway really gets in the way of them being able to make the correct correlation between what they’re hearing and what they’re reading and their ability to make those connections to be able to read. So, Fast ForWord specifically helps children to speed up that processing by taking them through speech and sound exercises. And again, they work for a good chunk of time of day, up to about 45 minutes to an hour and a half a day, and over a period of time to be able to see the difference.

The programs put out by a company named Scientific Learning. So I’m qualified in being able to work with children with that program, but we go through scientific learning. They have a lot of great information on their website to help with understanding the brain and children who are struggling with learning problems.

Emily:

I have some questions about dyslexia. Is that a label that can be dropped?

Carol:

Yes, I believe so. And certainly, if you were looking at places like scientific learning, where we are working on specific things that are working on the brain, if we’re addressing the brain and changing the brain, things can definitely change, and children do not need to keep that diagnosis into adulthood.

Emily:

I know ADD, and ADHD seem to just be piled on to a lot of other conditions these days. It’s so common. What are some of the recommended therapies that you like to do with your children who have those labels?

Carol:

So, one of the things which we’ve already talked about, which is doing the sensory things and working on the sensory areas are really important, but all our children get a mobility program as well, because when you move and you move in ways to organize your brain, your brain gets more organized and therefore you will develop better. So, we go back to crawling and creeping with children who are walking and running, it seems a little strange to, but once you learn how the brain develops, for example, when babies start crawling on their bellies and are moving on their bellies, their pons are developing. The pons is responsible for tracking side to side. Well, if you can’t read across the page and you can’t track in a smooth way across the page, you need to develop the part of the brain that is responsible for that tracking side to side.

And if you can’t use your eyes well together, that’s coming from the midbrain. And when children crawl and creep, when the children creep on their hands and knees, they actually develop their mid brains. And therefore, we see children who are not able to use their eyes well together, that improves once they get up on their hands and knees and they do some distances of creeping. So both those activities of crawling and creeping will develop the low levels of the brain, which help children with their learning, and it helps them with their focus and attention and makes the organization really just stick.

Emily:

I believe I know what you’re talking about, but some people might be wondering what creeping is.

Carol:

In order to distinguish between crawling on your tummy and on your hands and knees, we call crawling, that’s what most people would think of as combat crawling, you’re down on your belly.

Emily:

Can you distinguish the difference between creeping and crawling?

Carol:

In order to be able to distinguish that difference, we chose to label crawling as being on your tummy — you combat crawl. Like in the army, you combat crawl, you crawl through the grass, you’ve got your belly down on the ground, like a snake crawls through the grass. And when you’re creeping, you’re up on your hands and knees, like a cat who gets up off its… cats creep through the grass. They get low, but they don’t have their bellies down. So that’s the difference between the two.

I mean, most of the time, these days, I think when you talk to most young parents, they talk about crawling and they mean both. So in order to distinguish, because it’s really important to distinguish, which is which, and because each thing is developing a different part of the brain, we’ve got to label it, with one or the other.

Emily:

And crawling you said is developing the ability to go back and forth, like reading a page?

Carol:

Exactly. Yes. So crawling is responsible for the pons, there are cranial nerves that come out of the pons and they attach to the side of our eyes and they help our eyes move side to side. So being able to scan a room, being able to scan across the page, and move smoothly side to side, our pons is responsible for that. So if that message from the cranial nerve is not coming strongly out of the pons, then children will tend to bounce across the page. That eyes will jump. They might jump across a word, they might skip a word or they don’t read all the way. So, maybe they read in the middle of the page, but they don’t get all the way to the end of the page. And then they move their head in order to be able to scan. We see it with reading, and we see it also socially, children don’t scan around their social environment if they’re struggling in this area, too.

Emily:

I obviously didn’t creep and crawl enough as a child. I’m pretty sure. So, creeping does what?

Carol:

[inaudible 00:42:44] that comes out of the midbrain and also helps us to move our eyes up and down. So it helps us to move our eyes down the page and use our eyes together. So angling the eyes, so the nerves that cause the muscles of our eyes to put one picture on top of the other. So, eyes have to angle themselves in a way where we can see both pictures. And if we can see one picture instead of two pictures, then we’re able to, therefore, see one word at a time. If your eyes don’t work together in that picture of the word, if they’re seeing fuzzy or actually see double, then that’s a problem. So, the creeping helps us to be able to develop our eyes so that they work well together.

Emily:

Okay. So it’s important to do both; to have enough time for your body to have done both. A lot of kids, my oldest included, and she’s neurotypical, but she isn’t coordinated, and she also went pretty much right to walking and barely crawled. So that leaves a gap, and it has to do with her coordination. Might it be better if she had done creeping and crawling?

Carol:

Yeah.

Emily:

Yeah. Can you explain and maybe you already did, but what is Relationship Development Intervention?

Carol:

No, I didn’t really explain that. So that’s a program that was developed by Dr. Gutstein. There are quite a few therapists around who use Relationship Development Intervention, and myself and another member on our team have been trained in this and developed it even more so than that. So relationship development is really working with children. That specific program is developed for children with autism, who have difficulties making that connection. And we’ve taken a lot of training with that and with other social programs, which really helped parents to be able to develop the relationship with their children and to be able to learn to play together. So, we’ve worked with other training where we really learned how to observe parents together. We use a lot of videotaping. We’ve always used videotaping for years to look at the different programs that children are doing, but we particularly use it to look at, how is a parent able to guide their child?

How is a parent able to support their child? How is the child responding when a parent does guide them? Do they fall into the guidance and accept the guidance? Do they push back from it? Do they struggle with knowing what the parent’s trying to teach them? How do children do playing together with other children? So, depending on where the child is developed mentally, we develop a plan with the parents, so that they can play and interact and teach their children daily skills, because they’ve gotta be able to take that guidance and understand that guidance.

And when you have a child with special needs and they have difficulties, they can’t learn as quickly as neurotypical children, they don’t just watch something out the corner of their eye and then just say, “Oh, I’m going to try that myself.” They miss out. They miss it because they don’t see things out the corner of the eye. We were just talking about the vision, they miss those things visually. So they often don’t pick up on those things and be able to make that association and model after their parents. So we have to break skills down for them, and therefore, parents also have to learn how to break down those skills and how to intervene and support them in a way that they can learn.

Emily:

Are you certified in Applied Behavior Analysis?

Carol:

I haven’t been certified in it, but I’ve taken a lot of training and I integrate those elements of that training, those two things in, as well.

Emily:

How is that different from RDI?

Carol:

So RDI is more, something that is very much based on working with the child, guiding them and supporting them. ABA tends to be more task-based and being able to say, well, ‘can you do this?’ And building from one task to another. So, a child learning to sit at the table and answer questions, that would be something that would be very much along the lines of RDI as opposed to playing and doing an active game, which would be more of ABA. ABA tends to be, depending on the level and what exactly what you’re doing, but it tends to be, we’re sitting at a table, we’re following a task. So there are elements of that, that I use and I’ve been very much tailor-making it. So there’s a time and a place for a child to learn, sit at a table and answer a question. And so certainly, we will plug that in for families when a child needs it.

Emily:

Can you tell me more about your parent training and how the Family Hope Center teaches and educates parents on how to work with their children?

Carol:

Yeah, certainly. So, our parent training is a course that we have, up to now, actually been teaching for parents in over three days. It teaches parents how to use our developmental chart and work with the developmental charts and really learn the different areas of function. So, there’s the visual function. There’s the auditory function. There’s a tactile function. There’s mobility. We teach parents how to evaluate their children in our parent training. So basically, we teach them to look at all the different functions that our brains have, our visual function, our auditory function, tactile function, mobility, language, manual, and emotional, and be able to map the child in each of those areas developmentally, and to be able to see, okay, in each of those areas, where’s my child functioning? What age level are they in each of those areas?

So that’s the first part of our course, where we work with parents and we teach them to be able to know, where is your child? If you don’t know where your child is, you don’t know what therapy you need to do. So you have to know where your child is. And it’s really important for you to be able to measure your child on an ongoing basis. If you don’t know how to look at your child, and if they’ve changed, then how can you adjust any therapy or treatment that you’re doing at home, or even if you’re not the one who’s going to make the adjustment, and you’re going to rely on other therapists outside therapists to help you, that’s certainly a good thing to do. Of course, if you don’t know where your child is, and that your child’s changed, then you don’t know. ‘Oh, well, I should be calling up my therapist right now to say, he’s changed. I need to change something.’

So that’s really important. But as well as teaching about the developmental chart and where your child is, we teach a program in that parent training and we teach parents how to develop a treatment plan that they can do at home, starting with the sensory areas and some basic mobility recommendations. And to know, what should I do, how much of it should I do, how to gradually bring that into your child’s day, and into your day as well. So our parent training is actually about 22 hours of teaching. It’s an online course right now. We hope that someday we’ll be able to do it live again. Right now, we’re not teaching it live obviously, but we’re very excited that we have this course online.

Emily:

I think it’s brilliant actually.

Carol:

I think so too.

Many parents can’t afford to, and it’s much more cost-effective. In addition to parents taking this course, we have several of them who are going through it right now and taking the online course, and we’re going to be providing support, for those parents who maybe never come to see us, or don’t get support directly from us, they’ll be able to be supported through being part of our community because we’re going to be having ongoing teaching at least once a month. We’ll be teaching to support parents who have gone through that parent training and need additional help, support, and guidance, and we’re going to be quick.

We have a video library that will be able to be accessed for parents after they’ve taken the parent training, but there’s a lot that you can do from the parent training. We know just from over the years of many parents coming to us and taking the course live, that many parents are at home working, and we hear from them, we hear how they’re doing and how their children are doing and they’re doing really well. So, we know that the things that you can learn from this course can make a big difference to your child.

Emily:

I wanted to know if you could share some results that some of the children have seen in your practice and some of the things that you’ve just loved and will always remember — some of the hard work that the parents have done with you and what is possible.

Carol:

Yeah, certainly. So, often I’ll think of the children that we’re about to see, or we have seen, and you had mentioned CVI and children who have visual difficulties. We do have, and this is part of our course as well, that parents who have children with visual challenges can learn the process that we put babies and young children through when they don’t see. So we’re going to be seeing, for an update in their program, a little girl in the next week or so, who, when we first saw her as a baby, I think she might’ve been a year old or 18 months at the most. And she did not see light and dark, if we shone light in her eyes, nothing happened. The pupils didn’t respond. She didn’t respond to the flashlight.

It took multiple times of shining a light in her eyes before the pupil even changed, let alone her ability to be able to see, she couldn’t track a light at all. So she was not able to see. So we went through the whole process of developing her vision, going through, being able to see light and then to see black and white, and then over time to be able to see color, and she actually read sentences now. She can see her family. She responds to her family. She can see them across the room. She can smile and laugh at her brothers and sisters across the room. She’s still challenged in her mobility pathway. She can crawl, but she’s unfortunately not able to walk yet, but she can see, she can read, she can learn, which is great.

Emily:

I want to go back to visual stimulation, and I have some of my fond memories with my son doing the visual stimulation. There isn’t a lot of information about that on the internet. So that’s why I’d like it, if you could share the purpose behind that, and also there are many different ways to teach a child to read. What is your favorite, even for maybe a typically developing child?

Carol:

Certainly, certainly. So, when it comes to the visual pathway, the first thing when a baby’s born, is that they start to respond to light and they can see light and dark. So if a child is not seeing, that’s where we start, we go right back to stimulating with lights and gradually and break down the stimulation. A typically developing child, the light will go on and off and go on and off multiple times in the day, but we have to increase that for a child who’s not developing typically. They need more on and offs of the light, so we stimulate with lights.

We stimulate with lots of contrast because they don’t see the contrast that’s around the environment. So we need to stimulate with brightly colored lights, give them things to see, give reason for the child to turn their vision on, because what will typically happen with a child who doesn’t see very well, is they accept the fact that they don’t see very well and they turn on their auditory pathway and they turn it up and they rely on their auditory pathway a lot. So, we will stimulate again in small doses with the right amount of frequency, getting rid of the background noise and really focusing on the vision and giving the child an opportunity to turn their vision on.

And working on input, which actually gets into the reading as well. So, input is so important for children. We have to put the information in for them to be able to see the light. So stimulating with a light, stimulating with black and white pictures, there is a good amount out there for black and white now, and that’s for well babies, but that process is the process by which children who have neurological difficulties we’re seeing, is the process we put them through for being able to learn, learn to be able to see, stimulating with black and white, and then eventually stimulating with color.

Emily:

Right. And then moving on to reading, what is your method of choice?

Carol:

It’s a really good question. What is the method? I think I’ve said, and if I haven’t said it, I want to say it again. Every child we see is very individual, both the parents are individual and so are the children, and having an individually tailored approach is really important for every child, no matter what level they’re at. And it’s the same with reading. It needs to be taught, it’s a learned skill and it’s a learned neurological function, but our brains do it. So, we need to have the right things in place, neurologically to be successful in reading. And if you are neurologically organized, you could actually pick up reading phonetics.

You could pick up reading with learning whole words, you could pick up reading just while your mom just read to you, pointing to the words on the page. So it’s the brain that’s really important. So having an individually tailored approach is really important for those children, if we know, for example, that the auditory pathway is not picking up the message, then phonics might be more important and the level of phonics might be increased compared to whole words. I like to certainly start out with whole words, because they’re more meaningful. If we start out with just sounds, sounds don’t mean anything. We don’t talk just in sounds, we talk in words. Now the word is broken up into those sounds and if our brain is organized, we can hear all of those individual sounds. And if we can hear all those individual sounds, a little bit of phonics would take us a long way. We’d be able to learn it quickly.

So, the first thing I work on, is lots of input with whole words, because the child’s understanding will improve with that. Their language will improve with that. And that’s the first step. Once they’ve had a lot of input, many children will just learn to read on their own, they don’t need phonics at all. Some children do need some level of phonics, because they need to learn how to sound out the word. Some will do it more naturally. And so if just taking my three children, my first child learned totally with her words, never touched phonics, in fact, didn’t understand the idea of-

Emily:

Like flashcards?

Carol:

Yes. Flashcards of whole words. And we don’t just do the in and the on, and those words, most of the time, the small words, are the words we tend to get flashed at a lot with children, but we do big words like elephants and alligator and fun words that children are excited about, because the more input they get, the better the output, you need lots of input to get output. And if they’ve got lots of references of words, that information goes into their brain, it’s stored in an organized way in their brain. And they can come back to it and say, okay, they start to tie things together.

What typically happens with children with special needs and children who are labeled with dyslexia or learning problems, they go in a classroom where they get less reading, they have less reading, they have less words to bring home with them. They need more input, not less input. And yet, they end up working on a lot of output where they’re struggling, and they get discouraged. So, the biggest thing that I will often tell parents is, if your child is struggling with learning, organize the brain first and give them lots of input in the areas that they are struggling in — don’t ask them to output. They’re not neurologically ready, and they’ll just feel like failures.

Emily:

So you wouldn’t recommend, reverting to only listening to let’s say, if you can’t read, just listen, if you have dyslexia?

Carol:

No. That’s certainly one strategy for children who are not learning when they have dyslexia or that label, then learn through the auditory pathway, just read to them. That’s what has to happen often with children who are really struggling in that area for a while. And certainly, we see many children where they’re learning great, so long as mom teaches them, so long as mom reads it to them, or the teacher reads it to them and they hear it through their auditory pathway, they can learn it, but they can’t learn through their visual pathway.

Emily:

They have to go back to the basics of creeping and crawling and then there’s Fast ForWord program. Sounds really interesting.

Carol:

Exactly. Fast ForWord really, it makes a lot of headway with children, with dyslexia.

Emily:

Do you know anything about the Orton-Gillingham method?

Carol:

Yes. That’s a very good program that is used. Some of my parents will use it. It’s used a lot with children with special needs. It breaks things down in a really good way. It’s a very good program.

Emily:

You just put out an online course and you told us an online parent training, and how can people take that course? How much does it cost?

Carol:

Yeah. Good question. Well, actually we put out two courses, to just clarify. The first course is called, “Understanding Your Child’s Brain”. And it’s the first four lessons that we give in the whole course, so that parents can take that free course and they can learn a lot about the brain, just in those four modules, and they can also decide, ‘is this the right thing for me?’ And then after that, they could purchase the course if they wanted to. But the first portion of it is definitely free. And we think that’s really important. We have about a hundred people going through that right now. And some people have finished that and started to move on to undertaking the whole course. The whole course right now is $499, for our parents. There’s a graduate price for parents who have taken it in the past.

So, if anyone’s hearing this podcast and has taken our parent training in the past, please let us know, because we want to give you a special graduate discount for that. But the course for newcomers is $499. And that’s just a one time fee. Obviously, mom and dad can take it together, and grandparents can take it if they want to. We feel it’s so important to have a good support team for you, who help you and everybody understands why you’re doing the things you’re doing. So we’re really excited that this course now is online and you don’t have to travel, just one person could travel, or two, it’s much better for being able to support the whole team.

Emily:

I want to wrap up here, but I recently heard something that a parent said, they were sharing their story with us. A mother had said that she was learning to accept that her child’s IQ was not going to change. And I wanted to hear from you, it definitely changes, isn’t that right?

Carol:

It does change. Yes. For us, certainly, the children that we see, if you measured their IQ, it does change as they become more organized. That’s a tough thing for a mom to have to feel that she would need to accept that, and unfortunately, we see that, we just see, there’s almost like a lid put, okay, your child’s got down syndrome, therefore they can’t go beyond a certain level and to have a lower expectation. There’ve been studies done with teachers, and if you’ve heard of the studies where, they will take a group of students at the beginning of the year, and they’ll tell the teacher, who’s teaching those students that, these are the children who have an IQ or the level of learning, this is the high level and these are the children who have the lower level.

If they tell the teacher and they switch the students in the classroom and they tell the teacher that the children, that actually are the ones who are more struggling and they switched them, and that those are the ones who are doing really well, the outcomes of those children are higher at the end of the year. So our brains, if we’re told to expect something, we’ll expect a certain level of output based on the information that we’ve been given. My son works in schools for a while as a teacher, and he said that when the students would come into his classroom, he would not read their IEPs, because that would cause him to feel like he judged them based on what was written. He got to know them first and had higher expectations.

And then when he’d go back and read the IEP that came from another school district into his school, he said the outcome was much greater than what was actually written in the assessment that had come with the child. So if you can have a higher expectation just right there, the confidence level and the level of neurological ability rises.

Emily:

And what’s possible.

Carol:

Yeah. And what’s possible, definitely.

Emily:

So, we need The Brain Possible.

Carol:

Yeah. Absolutely. It’s a great name by the way. It’s great.

Emily:

You have a book coming out soon, do you have a publishing date yet?

Carol:

The publishing date is early next year. So in about January of 2021.

Emily:

And what is it called?

Carol:

It’s called, “Healing a Child’s Brain.”

Emily:

Well, I look forward to reading it. It’s been wonderful to see you and to talk to you. Again, Carol, thank you so much for making time for me today and for our listeners. I just loved your parent training and working with you guys in the brief time that I did. You and Matthew and your team really left an imprint on me. And a lot of these stories that I’ve already heard from you, I have not forgotten and I still have, I have your binder right behind me. That’s why I keep looking. I have the binder with my name on it, and ‘ve got all this stuff that you gave me and I can’t bring myself to get rid of any of it. I love it.

Carol:

That’s great. Well, thank you. It was a beautiful relationship to be able to get to know you, and it certainly is with all of our families and we treasure them. So, thank you. Thank you very much.

Emily: 

Thank you for everything that you do.

Carol: 

Thank you. Thank you. And certainly, we will have links on our website. We’re just in the process of getting the new links for our courses on the website and on our Facebook and places.

Emily:

We will link to them.

 

 

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