Episode #11: Educational psychologist Yvonne Kruithof about children with a visual impairment

Below you will find the transcript of this podcast.

00:00:03
Maud: Welcome to the ADOA Podcast. ADOA is a very rare hereditary eye condition. My name is Maud van Gerwen and I am here with…

00:00:11
Lion: Leon Augustijn. We'll be talking with professionals and experts about their perspectives on ADOA. Welcome to this podcast. Welcome, Yvonne.

00:00:21
Yvonne: Thank you!

00:00:22
Lion: Great that you're joining this podcast! And who is Yvonne?

00:00:26
Yvonne: My name is Yvonne Kruithof, and I work as a general educational psychologist at Bartiméus, a school for children with visual impairments. I've been doing this for many years with great pleasure. My primary focus is conducting research with children. This means new students are admitted to our school, as well as students attending schools where support is needed. This can include questions like: "What is their visual development like? What questions do they have?", but also: "How are they developing cognitively? Are there any language or social-emotional issues?" The diagnostics are actually quite broad. I also collaborate with parents and teachers, having many conversations with them—a very broad role. I also work on projects and contribute to policy development, so the educational psychologist is involved in all levels of the organization.

00:01:18
Maud: Yes, and is that research and such primarily focused on the children who attend this school? Or also on children outside Bartiméus with visual impairments?

00:01:30
Yvonne: Well, that's essentially the children who attend this school, that's what I'm involved with. But there are, of course, children who currently attend regular primary schools but have a visual impairment, who are also supported by Bartiméus. And sometimes they find they don't quite fit in within mainstream education. In a class of thirty children, if you have a visual impairment and perhaps also dyslexia, how do you ensure you get the right attention? And sometimes that leads to children transferring to our school. So then I also see children who are enrolled in our program.

00:02:00
Maud: Yes, because when they come to Bartiméus, they often have a little more than just a visual impairment.

00:02:07
Yvonne: Exactly. Often, when children only have a visual impairment, they can manage within regular education, but often, if there's something else involved, and that can be in all sorts of areas, like reading difficulties, but sometimes also if you have ADHD, or are simply more socially and emotionally vulnerable, then that combination allows schools like this one at Bartiméus to devote a little more attention to it.

00:02:31
Maud: Yes, because you say you do research with them on all sorts of topics, and then let's just say you do the follow-up as well? So you help them with whatever comes out of the research?

00:02:45
Yvonne: Well, in general, the diagnosis is indeed mainly aimed at mapping everything out properly: "What do they need?", and then thinking together with parents about: "Is this really the right place for children?" And if children are admitted to school, the teachers are actually most involved then, but if there are any further questions... For example, I do have conversations with children, I sometimes also do a bit of therapy, to support them a bit more in that.

00:03:10
Lion: Yes, yes, but I can also imagine that this might be useful for parents as well.

00:03:14
Yvonne: To receive further support?

00:03:15
Lion: Ja

00:03:16
Yvonne: Bartiméus does that too. I don't do that as the school's pedagogue, although I do, of course, regularly meet with parents. So I do it a little bit, but we also have a whole treatment team working with each family, including a social worker, an outpatient counselor, and a fellow mental health psychologist of mine. So, in that way, we actually have a whole team working with each family. Depending on the issue, we can address it.

00:03:41
Maud: Yes.

00:03:42
Lion: And suppose you have a child who has poor eyesight, in that developmental phase, how do you deal with that?

00:03:55
Yvonne: Generally speaking, it's mainly about thinking: "How can we ensure that development proceeds as normally as possible?" And then, in all sorts of areas, you're primarily looking for: "What resources does a child need?" We have a great department for that at Bartiméus too, where highly experienced people with extensive knowledge in this field can conduct research and contribute ideas. And we can then apply that here at school. Furthermore, it's also my job as an educational psychologist to contribute ideas: "What impact does visual impairment have on children's development? Can they learn to read? Can they learn to count?" But also: "How will they develop socially and emotionally? How will they view themselves, gain self-confidence, continue their development, and make friends?" Yes, visual impairment affects all of that.

00:04:39
Lion: Yes, and how do you do that in practice?

00:04:42
Yvonne: We do this a lot by observing and looking along with the children, and then also talking to them. "How do they see themselves?" There are so many excellent tools for exploring that as well. So, it's really a combination of observing in practice, in conversation, and then putting it all together and then offering advice on: "What else is needed?"

00:05:07
Maud: Yeah, okay. And then you actually see a kind of "greatest common denominator," so to speak, that many children struggle with, or...?

00:05:16
Yvonne: There are so many different visual impairments, so you see a lot of difference there. What I see in all children is that need to discover: "Who am I? And what can I do?" So to speak, "What influence does this visual impairment have?" Very young children don't think about it that way, but of course they do think: "Hey, I can just join in," or: "Do other children have that too?" So, it's mainly the influence of that visual impairment on their development, and that's the same for all children. You learn by watching, by copying things. If you look at toddlers, for example, they're constantly watching other children: "Hey, how do they do things?" And then they imitate them. So that's how we learn as humans. But then, if you imagine that you can't see or see much less, you don't have all those examples, so then things have to be taught much more emphatically, and you have to be told that there's something to go towards. And you even see this in babies: motor skills develop because you see something in the distance and think, "Ooh, I'm going to go there, I'm going to explore that. I'm going to crawl over there." But if you don't see it, you don't go there. You move less. So, visual impairment has a huge impact on a child's overall development.

00:06:36
Maud: Yeah, yeah.

00:06:37
Lion: And how do you deal with parents who say: “Yes, my child doesn't need to be challenged that much”?

00:06:45
Yvonne: I don't encounter that very often, because parents often really appreciate it when they think along with them: "Well, how can I help my child develop like my other children who don't have a visual impairment, or rather, like the children in the neighborhood?" I think you primarily talk to these parents to explain why it's important, and in my experience, parents always have a very good reason for bringing something up. Sometimes it's due to uncertainty or unfamiliarity with the visual impairment, so they think: "Oh, maybe I'm asking too much, or maybe I'm making things worse." And sometimes it's also the whole new world of raising a child, like: "What does that entail?" or: "What is a child actually supposed to be able to do at a certain age?" So then you provide information about what constitutes normal child development, and then compare that with the development of a visually impaired child so you can think along with parents: "Well, this is actually quite normal what's happening," and: "This just needs a little more attention."

00:07:43
Maud: Yes, because I can also imagine that it is indeed a fine line for parents: more stimulation, more challenge, until: “Am I not asking too much?”

00:07:56
Yvonne: Yes, and I think all parents feel that way. I think in every parenting situation, you're always thinking, "Am I doing the right things? Am I pushing too hard? Or..." And visual impairment makes it even more complicated because many of these parents don't have that experience, nor do they have neighbors with visually impaired children. So how do you get your information?

00:08:18
Lion: But that's also psychological, that has an impact, that's social-emotional. How do you deal with that when...

00:08:29
Yvonne: Yes, it affects both the children and those parents. If you look at the social and emotional development of visually impaired children, you will see that visual impairment also has a major influence on this. What I just mentioned, that you notice: “We can look at facial expressions for a moment,” and then I think: “Oh, someone looks a bit unhappy, or is starting to look a bit grumpy,” or the nice example that you can see in your teacher: “Oops, I have to be quiet now, otherwise…” That facial expression, that non-verbal communication, that is something that many visually impaired children miss, and that means that sometimes you still make a joke, while all the visually impaired children around you think: “Oops, I should actually stop,” and that as a visually impaired child you miss that information and then still make a joke. So that has a huge impact on your self-confidence, because if you keep noticing: “Oh, I’m not quite fitting in”… I have one example, which is an extreme example, but I heard about an itinerant support worker who supports a pupil at a regular school – a blind pupil – and she was enthusiastically talking to her friends in the schoolyard, but yes, she was just talking and telling stories, and those friends were already thinking: “Well…”, and they were all showing signals of: “We want to have a turn too,” but this girl missed those signals, so she kept talking and in the end those friends thought: “I don’t know what to do anymore,” so they walked away, but this pupil didn’t realize that. So at one point the teacher came out and said: “Hey, who are you talking to? Because there is no one else on the square”, of course very painful for this girl. It's also painful for those friends, because they're also looking for: "How do I do this well?" So yes, I think a lot of explanation about: "What are you doing well?", or: "What are you missing?" is important. And very often, visually impaired children do not realize what we, as sighted children, see. I once walked past the school here with a student, and we were standing next to a car, and I said: "If we stand on this side, we can see two wheels of the car, but we know there are four." Then I got a really surprised look in my direction: "Do you only see two?" That really was the impression of that visually impaired student that we could see everything. For me it is very important to engage in conversation, and that is the beauty of my profession. I get to talk to a lot of children, talk to a lot of parents and explain about it, the psycho-educational part. I see it as my mission in life to explain: “What is your visual impairment? What does that mean to you?” Also to be able to explain it to others, because sometimes you also encounter a lot of misunderstandings like: “You come to school by bike, so to speak, and then you suddenly start reading Braille. "I don't understand that at all." We understand that, because if your visual field is good, you can orient yourself well, but if your central visual field isn't working, you can't read letters and have to use Braille. Of course, that is very complicated to understand, so if you can explain that and then also tell what is needed, what help you need, that is, I think, extremely important for all visually impaired children.

00:11:40
Lion: Yes, and you call that psycho-education?

00:11:42
Yvonne: Psychoeducation, yes. That's a nice word, and psychoeducation covers all sorts of conditions. You can get psychoeducation on autism or ADHD, but I'm primarily developing psychoeducation for children with visual impairments.

00:11:55
Lion: Yes, and can you tell us a bit more about that? About what you develop?

00:11:58
Yvonne: Yes, a few years ago, I developed a program with some great colleagues called "Zie je wel" (See You). It's a program for visually impaired children in grades 3 and 4 of primary school. We chose that young age specifically because we believe it's so important to start talking about this with children from a very early age, so they learn early on: "What's actually going on with me? How can I explain it?" And that's aserious game"We call it that, so to speak. It's a game, but it does have a very clear educational element. So, it's a series of lessons they can do on the computer, with animations where there's a situation, for example, in the classroom: you can't see the board, how do you solve that? Or you get a really bad copy from the teacher and you can't read the letters, how do you solve that? Or, for example, in gym class: you keep getting tagged first, how do you solve that? And that's also the idea behind cognitive behavioral therapy, about helpful and unhelpful thoughts. Because if you keep thinking, "Yeah, see? I'm visually impaired, so I can't participate in gym class anyway," then you get a kind of prediction, and ultimately, it won't work out. So, those helpful thoughts are very clearly in that program: "Yeah, but I understand perfectly well why this isn't happening... And I have to ask for help, or I'll talk to my teacher, or I'll solve it this way."

00:13:20
Lion: I can also imagine that it is useful for parents to have something like that.

00:13:24
Yvonne: Yes, it's great you say that, because we did indeed create this program, and we also created a wonderful program for children with cerebral visual impairment. Then we thought: "We're explaining so much to these children, but what we notice in practice is that when children sense their parents are a bit unsure about it—don't quite understand how it works—they don't ask questions." Children are very sensitive in that regard, or perhaps they notice: "Oh, my father gets really upset when I talk about my visual impairment, so I won't," while children actually have a great need to ask questions and get explanations. And then we thought: "We need to create a program for parents about that," precisely because we believe parents should be a bit ahead of the curve; they should know a little more than children. When they have questions, parents can answer them. What I notice is that parents are often a bit hesitant, thinking, "Oh dear, I'll have to tell them everything. For example, that they might go blind, or that it might get worse, or that they might never learn to drive a car." Sometimes children aren't even thinking about that yet and are wondering, "Will I be able to go to primary school just like my brother or sister?" And often, things are arranged very well for children. Once they have sufficient answers, they stop asking questions. And when new questions arise, and they mainly arise when they start school, when they start comparing themselves to other children and think, "Hey, this is different for me than for others," then they start asking questions. So we've now developed a program for that, an online program we've called "Looking Ahead Together." It's specifically for parents, but also with parents, and I'm very proud of that, because we actually found five families willing to give interviews. So these parents shared their own stories, what it was like to hear they had a visually impaired child, and a child's development. And what I also find wonderful is that these parents radiate so much confidence in the future, because these children are developing beautifully. Sometimes in their own way, sometimes differently, but there's also a lot of development. So I think that message is very important for many parents who may have just been told, "I have a visually impaired child," and think, "Oh, what does my world look like now?"

00:15:43
Maud: Exactly. Because your child has poor vision, but can still think normally, so to speak.

00:15:52
Yvonne: Absolute

00:15:53
Maud: That's very separate.

00:15:56
Yvonne: And the logical reaction, of course, is that all your certainties as a parent suddenly disappear. You naturally have an idea: "You're having a child, a child is born, you have some kind of vision for the future," and suddenly that's no longer true when you hear they're visually impaired. And of course, many parents don't have that experience, or not yet. So sharing information with each other is incredibly important, talking about it. But it's also simply about providing information. So in this program, we wanted to share quite a bit of information, including about normal child development, and then juxtaposing that with the development of a visually impaired child. "What differences do you see? What similarities do you see?" And lots of tips in there too: "How can you help make things a little easier or ensure that development continues smoothly?" And also a section on what we call 'living loss,' because I think it's also very important that parents realize they're not alone in this, that it's perfectly understandable that you're temporarily thrown off course and think, "Oh, how are you going to cope with this and that?" And that this process does not suddenly stop. A few years ago, I was able to organize a parent-teacher evening here at school. It also focused on dealing with disability and loss, and one of the mothers said to me: "Yes, I'm actually very happy that my child is at Bartiméus school, because he's started developing again. I see my happy child, because in primary school he became increasingly quiet, didn't want to go to school anymore, and I really see that development again. I have my child back, so to speak. But still, when the taxi bus arrives early in the morning, I let my child get in, I wave him goodbye, and I really have a good feeling that he's going to Bartiméus... He really feels at home there. But then, half an hour later, I suddenly see children from the neighborhood cycling to the nearby primary school, going together, and it hits you again, that you think: 'Yes, this is different for my child.'" And sharing that with each other, and especially the concept of 'living loss,' soon in secondary school, such a moment will arise again. And perhaps later on, with your child's studies, things will be a little different than for others. And that, too, is often the experience, you'll find a way through. Visually impaired children have just as many opportunities as sighted children, but sometimes it just requires a little more support and guidance.

00:18:18
Maud: Yes, and you facilitate that too? So that parents can talk to each other about it?

00:18:24
Yvonne: Yes, we did indeed have a parents' evening here at school a few weeks ago where I presented this program, as it's still very fresh, and you can immediately see the conversations that arise there. And what I find really beautiful about it is... how do I put this correctly? Taking the parents very seriously, acknowledging their concerns, not dismissing them, but creating space for discussion. But also sharing the strength of parents and the solutions they've already come up with themselves. So I find that collaboration particularly beautiful in a school like this. That you can connect from the perspectives of the teachers, the parents, and the children—I can connect them beautifully in my work.

00:19:08
Maud: Yes, nice.

00:19:10
Lion: Now, let's say I'm listening, and I'm a child, or I'm a parent, and I'd like to use that part of that program or go through that, how can I do that?

00:19:21
Lion: If you're a Bartiméus client, you can get a login for this through the treatment team I just mentioned. So it's available free of charge to everyone receiving care from us.

00:19:31
Lion: Yes, so it hasn't been sent externally yet?

00:19:34
Yvonne: No, not yet. That is my dream, but we also do a lot of scientific research at Bartiméus, so you can see that. The program I just mentioned, we conducted a study on that together with the Vrije Universiteit, together with Paula Sterkenburg, who is a professor there. Because yes, you can come up with something, but does it actually do what we want? Do children feel better? Do they have more self-confidence? So we conducted research on that, and fortunately, it showed that you do indeed see a positive improvement in self-image. When they compare themselves to other children, they think, "I now know exactly what I need," but you also notice that they're better able to ask for help. So we really demonstrated the effect of this program. And the reason I say that is that we'd like to do some scientific research on this program first before we...

00:20:21
Lion: Bring it out

00:20:22
Yvonne: ...will make it freely available. But we will definitely do that, because ultimately, we want all parents to be able to use it, whether they're at Bartiméus or not.

00:20:31
Lion: Yes, nice.

00:20:32
Maud: Certainly

00:20:33
Lion: Thank you.

00:20:34
Maud: Yes, thank you

00:20:37
Yvonne: You're very welcome.

00:20:40
Lion: Thanks for listening to this podcast.

00:20:42
Maud: Should you have any further questions or wish to discuss this further? Please contact us via our website adoa.eu.