Agile Learning Center Network Spring 2020 Webinar Series
SDE and Disability
hosted by Crystal Byrd Farmer of Gastonia Freedom School
This presentation has a lot of information and it has a lot of information to capture kind of a broad range of disability and what that means. And I throw in a lot of suggestions and tips and things that we’ve done at our school. But there’s plenty more. There’s a lot of different dimensions to how you support kids with disabilities, and a lot of it is tailored to the individual child and all of that. So I may not cover everything, but you can always reach out to me for questions and anything else that you want to talk about as it relates to this topic.
So we’re going to talk about — we’re going to go through a list of specific disabilities and how I’ve encountered them and what they mean. And I’ll talk about some of the tools that we use at ALCs and how those can be modified to support children with disabilities. About me, I work at Gastonia Freedom School, and we’re an ALC specifically for kids with learning disabilities. So I’m going to say all of our kids have some type of disability. The majority of them have ADHD and or autism. So those are the two things that we work with the most. I myself have autism. So I was diagnosed about two years ago and that has helped me to kind of be aware of how I move through the world and also to help the kids as they’re growing up to help them understand what it looks like in the future — what it might look like.
Some of this stuff is going to come up. So just putting out there that I am pro screens and pro vaccine, pro medication, pro eating whatever food kids want to eat. So in the community, in progressive circles and types of communities that ALCs are in there’s a lot of different opinions about treatments, about diet and things like that, and how it impacts disability. So I’m coming at it from this kind of — I guess it’s the moderate stance about, about disability. And that we can support kids without restricting their intake or their screen time, and that medication and therapy are helpful ways to help kids with disabilities.
So we’ve been doing these webinars that have been great and on lots of different topics. There’s a couple more that are coming up. So those are going to be fun to look at.
And then when we talk about disability, one thing that’s important is that you try not to use a lot of euphemisms for disability. So it’s OK to say “child with disability.” You know, “special needs” is one of those. euphamisms. “Handi-capable.” “Differently abled.” Those kinds of things are just ways to cover up the fact that you’re talking about disabilities, but especially when you’re working with children it’s important to say, you know, to know what you’re talking about and to be really clear and honest about the fact that you’re talking about a disability. You don’t have to try and twist it to make it sound nice, because disabilities are disabling. So that means that there are going to be downsides to kids having disabilities.
All right, I try not to do a lot of pictures of our kids just because — I am going to talk about it later, but — there’s this thing called inspiration porn, where you always try to show the good side of your kids. Like on our social media, I usually use pictures of my daughter or Alex because his mom is pretty OK with using his image. And of course, I can ask my daughter for permission to use her images. But I do have a few pictures of our kids.
And then this is just kind of an idea of what Gastonia Freedom School looks like on random days. So it’s messy a lot of times. There’s a lot of kids walking around doing random things. It’s a lot of screens, especially now that we’ve been doing Zoom. There is a lot of that. It’s a lot of negotiating spaces and boundaries for kids helping them with that. But it’s a lot of fun. It’s kids using their agency and, you know, being themselves and learning through playing.
All right, so this is what I thought would be helpful to start out with, is that a child with disabilities is not going to surprise you or be like a magnificent miracle. You know? That’s not the path of normal people with disabilities.
Sometimes they do have to have support through their entire life. They may not ever learn all of the skills they need to be independent adults. So that means they may not be able to go and drive somewhere. They may not be able to go shopping on their own. They may not be able to handle money, and they may not be able to live, you know, as an independent person. That doesn’t mean that they don’t have things that they can learn and be happy with.
A child with disbilities may not master academic subjects, so there are going to be some things that are just going to be unattainable. And if you talk to kids, sometimes they don’t want to attain it. So that’s fine with them. You know, they don’t all want to go to Harvard, so that’s fine. One thing that a lot of people expect is that children with disabilities have some kind of savant skill, like something that they’re really good at. Like photographic memory or being able to do math in their head really well.
Most kids with disabilities don’t have this unique savant skill. They just, you know, have things that they’re good at and have things they’re bad at. They don’t have something that they can just like wow you with when they’re living their lives. A child with disabilities would rather play than perform. So a lot of times we want to see progress or we want to know what the kid knows. And I found that in our school it’s much better just to let them play, let them be themselves, instead of constantly assessing them or figuring out what they do and what they don’t know.
Our job as facilitators and parents is to meet children where they are, and that includes with whatever disabilities they have, whatever support that they need. Makes sense? All right, so there are a couple of different ways of looking at kids with disabilities: the medical model, or kind of like this deficit model, is where you’re seeing a child and you’re seeing their potential. So a battery measure has potential in it. So you’re saying, “Oh, well, this child knows how to do this and this. They know how to tie their shoes and they know how to clean up their table, but they don’t know how to do division.” And so you’re measuring them against this imaginary kid who can do “normal things,” so-called “normal” things for their age. So when you are looking at a child like that, you’re thinking, “OK, they lack some ability. So we need to give them supports and accommodation so that they can look more like a typical child.”
And that’s called the medical model of disability, because when you have a diagnosis, you’re mostly talking about their deficits. You’re talking about the things that they can’t do or things that they have difficulty with. And when you’re looking at a child that way, you think, “OK, well, they have these sort of disabilities, so we need to help them overcome it. We need to help them achieve typical functioning.” And so you’re kind of putting some some guidelines in place.
And this is how an IEP is written: “By their 5th grade year, this child will be able to do multiplication and division with one or two errors.” OK? So that’s the medical model of disability. What has been changing is that now there are different ways to look at disability, and the social model of disability says, “OK, we have children and they have disabilities. They have cognitive deficits or they have things that are ‘wrong’ with their body — not wrong but that are, you know, atypical for other children.”
When you know that they have these things that they need help with, you can say, “OK, this is what I can help you with.” You know, a child can’t do multiplication and division? We can give them a calculator. You know, a child can’t tie his shoes? He can wear shoes that don’t have laces on them. When you get out into the world, you know, these children, these people who have disabilities are coming up against perceived ideas about what their disability means. So, you know, you may have children who are in wheelchairs, users of wheelchairs, and you think, “Oh, well, they’re not capable of navigating through the world.” You know, that’s why we have wheelchair ramps. That’s why we have automatic opening doors. Those are ways that we support those people. And there’s a whole thing about wheelchair ramps that I might get into later. But there is a lot of things that society puts on people with disabilities that says, “Oh, well, they can’t do this” and they can’t do it because society is not set up for them to do it.
And there’s some… Well, anyway, so this is a way that we look at people with disabilities. And if we remove some of these barriers so people with disabilities can live full and healthy lives, they still need support and accommodations. They need things that will help them achieve what they want to achieve or do what they want to do in everyday life. But if we can remove a lot of the stigma and the shame, a lot of attitudes around how we view disability, then that makes their lives a lot easier.
Like I said, most of our kids have autism and/or ADHD, so that’s what I loaded the presentation with, with a lot of that stuff in it.
So autism. So autism is a disorder where children have difficulty in three areas: communication, sensory and repetitive restrictive interest. So communication is going to be any kind of talking, social skills, how to get along with other people. So that communication covers more than just words, using words. Some kids will be what’s called ‘nonverbal,’ which means that they don’t communicate effectively with speaking.
So there’s a lot of different ways we can be nonverbal. And I’ll talk about that when we get down to the communication side, but non-verbal children typically can only say a few words or they say words over and over. They may be able to use sign language or gestures. They may make sounds that are sometimes intelligible, sometimes not. But they may not speak at all. But they’re going to have some type of way that they communicate.
When it comes to sensory, that’s anything that involves touch, taste, sight, sound. And so people with autism are far less able to tolerate different types of inputs. So they may either really like loud noise or really hate loud noise. And if it’s a sudden loud noise, they may cover their ears. They may have a meltdown. They may run. The same thing with light. If they see a really bright light, they may not be able to tolerate it. They may get upset if they — if somebody touches them, they may have a strong reaction to that. My daughter has autism and she hated getting anything wet on her hand. So, you know, she gets — she gets wet and she just freezes and just starts crying. And so that really interrupts how she can get through the day if that happens.
Taste, a lot of kids with autism and adults are picky eaters. They just have very strict ideas of what tastes good, what feels good in their mouth, what they want to eat. Even if it’s like… Some kids are very focused on shapes, like they can only eat food that’s a certain shape. So that sensory kind of stuff.
And then repetitive, restrictive interest means that there are some things that they’re really captivated by and some things they just don’t care about. And also, there are some things that they like doing over and over. So you may see some behaviors that may look like OCD, which means like they’re washing their hands or doing some type of ritual. Like maybe they’re opening their computer up and down a couple of times. They may say things, they may repeat lines from movies or TV shows. And we have a lot of kids do that. And then they also have restricted interest. So they may like really like Legos or really like dolls or really like to talk about colors. And, you know, they just kind of kind of talk about that ad nauseum, if you’re a typical person trying to have a conversation with them.
So that repetitive and restricted interest is what goes into routines. So autistic kids really like their routines. They like things to be the same. They may get upset if something changes in the environment. So if they walk into your space and a desk has been moved, they may get really upset with that. If you always do spawn with a certain song and then you go into shares or something like that, if that changes, they may get really thrown off. They may get upset or they just may like freeze up and not be able to participate. They really like knowing what’s going to happen. So if you — because there’s some pictures here on the right that show a “first, then” board. So it says “first” and then it has a picture of people cleaning up. And then it says “then” and then it has a picture of kids outside. So knowing what’s going to happen by showing them “first, this is going to happen, then this is going to happen,” that really helps them to feel like they’re more in control of their environment. The other picture is of some different things: circle time, work, snack time, recess, walk, computer, library, and AP — which I don’t…I think that’s PE class. So having pictures of different tasks or different activities and putting them in an order that says, “OK, this is what we’re going to do during our day,” that can be really reassuring to kids with autism, because they know what’s going to happen and they’re not going to feel surprised that something is happening.
So visual supports are effective. I’m going to talk more about the visual supports that we have used once I get to ADHD. So visual support is a whole category of things that have been shown to help children with autism get through a day. So you have social stories which tells them what’s going to happen and what kind of behavior is expected. You have something called “picture exchange communication system,” which is a type of communication tool for kids with autism. So they’ll either have a tablet or have pieces of paper with pictures on them. And they can give you, like, the milk picture. And then you say, “OK.” So, you know, so that’s how they’re communicating. I already talked about “first, then,” and then these choice boards. And when it comes to kids with autism, you just have to kind of see what works as far as visual supports. Some of them like kind of these graphics. I just have, like, art on them. Some of them like real pictures of their actual objects in their home so that they can understand what you’re talking about. Some of them can just read words and be like, “OK, I’m fine. You have the word ‘spawn,’ you have the word ‘clean up.’ So I know that’s what’s going to happen.”
And then the other big thing about kids with autism is that social skills have to be communicated clearly, your expectations for how someone reacts in a situation is not going to come to them naturally. The way that typical kids learn is that they observe others in their environment. And so, you know, if a kid sneezes, they see someone say “bless you,” and then they see the kid say “thank you.” And so the typical kid looks at that and says, “OK, when somebody sneezes, I’m supposed to say bless you.” Well, an autistic kid may observe that interaction, but they may not attach any significance, significance to it. They may not realize, oh, this is kind of a ritual that’s expected. But for an autistic kid, sometimes you have to say, “OK, this person sneezed. It’s expected that someone says ‘bless you,’ and that’s a polite thing to do and that’s a good thing to do. And when you do that, the person knows that you care about them.” That’s how you kind of explain what social skills are to kids. Another thing is like personal space, so maybe you have a typical and an autistic kid, and the autistic kid is standing too close to a typical kid, but a typical kid may, like, scoot over. They may make a look. They make cross their arms. They’re giving these nonverbal signals. But you may have to tell the autistic kid, “Hey, this kid beside you is, like, frowning. He doesn’t look happy. He’s trying to move away from you. I think you should give him some space.” And the kid would be like, “OK.” You know, usually they’re not — they have, they don’t have any malice or malintent when they’re breaking a social rule. They just don’t know. And the more you can clue them into these things, the more that they will feel like they’re a part of typical society and they can function, because autistic kids often notice that they’re being excluded or that they’re not getting something. And helping them to get it is really what helps them feel comfortable in the world.
All right, so the next thing about autism is emotional processing. So we talked about kind of the sensory things? So those sensory issues can interrupt emotional processing. So on the one hand, you’ll have kids who get upset really, really quickly because something outside, something in their environment is is upsetting them. And they may not know, they may not have the tools to handle it. So you see a lot of meltdowns. You see a lot of crying. You see a lot of reactions that you think are kind of over the top. But that’s because they’re they don’t have the tools. They don’t — they’re reacting to something that is really sending a lot of signals in their body, but they don’t know how to how to express those, how to, how to come down. How to regulate themselves, how to deal with that interaction. And a lot of times, many kids will learn that if they scream really loud, you know, their mom is going to take away the food or their mom is going to turn off the lights or they’re going to turn off the TV. So sometimes kids will have a learned reaction that “if I do this thing…” and they think the input is going to go away. So that’s one way that emotional processing is different. The other thing is that autistic kids do have emotions and feelings, but sometimes they are not able to recognize those emotions and feelings in other people and in themselves. So autistic kids often have issues with seeing someone who is frowning, who is crying, who is yelling, and understanding the connection between what just happened and why that person is reacting that way. And then autistic — a lot of autistic people have something called Dysthymia, and that’s where you — you may be crying. You may feel really sad. But you don’t know what that emotion is. You’re like, “OK, I feel like crying. I don’t know why.” You know? “I don’t know how to explain this feeling. I don’t know how to communicate about it.” So they have trouble recognizing those feelings and what the next step is to to to manage those emotions.
On the right hand side in the picture, I have these two different ideas of what an autistic spectrum looks like. So the most common idea is that people are either a little bit autistic or really autistic. So that’s kind of just like a linear thing from a lot of autism to no autism. And that’s not what’s true for most people. The official diagnosis criteria for autism has what’s called “levels of support.” That’s the level one, level two, level three, and it just tells you how much support they need in the outside world. But that doesn’t encompass, like, all the ways that people with autism can have different issues. So the more complete idea of a spectrum is a circle. And you’re at different points going from the inside of the circle to the outside of the circle, and then the circle has different areas of functioning. So you have language. Some kids can speak full sentences and communicate clearly. Some kids don’t, you know, don’t use words at all. Some kids need support with their language skills. You have motor skills, which is something that’s often not recognized with autistic kids. But some kids may be able to hold the pencil very well. Some kids may have trouble holding a pencil. Some kids may start having pain if they’re writing. Some kids may not be able to run like a typical child or they may have trouble navigating obstacles, so there’s a range of motor skills. And then there’s a range of perceptions, so talking about how we perceive the outside environment. So some people can be really aware of what’s going on outside of them. And some people are not aware and just kind of what they call ‘live in their own world.’ So that’s kind of — The root word of autism is auto, is this idea that the first people who were diagnosed with autism were in their own world and were not, you know, checked in with the other world.
This other range is executive function. And we’re going to talk about that when we get to ADHD. And executive function is your ability to do the things that you need to do on a regular basis to get your life done. And so washing dishes, writing emails, communicating about your needs and wants, scheduling things. So executive function, or all these skills that — Some, some autistic people are really good at managing their lives. Some autistic people need others’ help to manage their lives.
And then there is the other range that some people are really sensitive to: tastes, smells, whatever. Some people are not so sensitive to them. So when we talk about a spectrum, you’re really talking about a whole group of skills and abilities that people are going to be at different levels on all of them. So it’s hard to say that somebody is more autistic or less autistic. What you’re really saying is that they have trouble in these areas and not so much in these areas.
When it comes to autism, there’s a lot of research and a lot of work around the therapies that autistic people get. So I said before, I’m kind of a proponent of of treating people. My daughter has had all of these therapies that I listed, and there are pros and cons to each one. It’s going to be a very personal, difficult decision for the caretaker, whoever the parent is of a child, to decide what therapies to give them. But I’m just going to kind of do a quick run through of the type of therapies available and some pros and cons and caveats about different therapies.
So the gold standard, so so-called, like, ‘best’ treatment for autism is called Applied Behavioral Analysis, or ABA. ABA is a therapy that works on external behavior. So ABA is focused on “maybe we don’t want the child’s stim…” So stimming is when they’re like waving their hands or making a sound over and over or tapping their legs. So that’s where the stim is. So a lot of autistic people stim to kind of regulate their own bodies. ABA may have a goal of saying “this child will only stim when they’re at home and not stim in public.” Or they may have a goal of “whenever we go inside the child or take off her shoes” or “when presented with a worksheet, the child will complete seven out of ten worksheet problems.” So ABA works on behaviors and the use of a variety of methods to prompt these behaviors. And that’s where you get into behaviorism, Skinner and this idea of internal and external motivation. So ABA uses external motivation, external reinforcement to get the ‘right’ behaviors that they want. So that getting the child take off their shoes, they will they will go in and out of the house. And every time they come in the house, the person might say, that therapist may say ‘shoes,’ and then the child will know that they’re supposed to take off their shoes. If the child doesn’t take off the shoes, they may stop them at the door. They may prompt them again, or they may actually reach down and take the shoes off their feet. So those are the different ways that they prompt somebody into doing the expected behavior. So I hope you can see kind of the downside of this is that it takes away the child’s agency when you’re physically handling them and physically making them do things. So that’s why it can be problematic, because you don’t always know why the child is doing the behavior, and ABA is specifically not about why the child is doing the behavior. So if you are just trying to get them to do the ‘right’ behavior, you’re removing some of the context around that behavior. ABA has been in use for 30, 40 years, and there are adult autistics now who say, you know, “ABA was abusive. It didn’t teach me anything useful. It made me feel traumatized, because people were handling me and making me do these things that I didn’t want to do.” So ABA has a very bad reputation in the autistic community. That said, there are a lot of parents and a lot of practitioners now who understand those concerns, who have talked to adult autistics, who maybe have autism selves and may be therapists. So there’s a lot going on in the field about how do we do this in a, in a, in a better way. And a lot of people who work with autistic people have have used the word ABA-like in their companies’ titles or something about behavior. So you may see ABA applied in different ways. And you just have to kind of see you have to see it for yourself. I think whenever you’re working with a kid or parent and you’re considering ABA, you kind of have to figure out what the practitioner is doing and and what the child is responding to.
The next type of therapy is speech therapy. Speech not only works on articulation and actual talking, it works on social skills and communication skills. So speech therapy is generally recommended for all kids with autism because it helps them if they do have dyspraxia, which means they can’t form words properly. Speech therapy helps them to form words and to use whatever language skills that they have. It also goes onto the other side where it’s helping children to understand different situations and to communicate their needs. In those situations, the speech therapy overall can be very helpful for kids.
Physical therapy is again for kids with dyspraxia, who have issues with motor planning, which means they can’t hold a pen or they can’t walk up stairs. They need help chewing their food. Things like that. So that’s what physical therapy helps with. And again, it can be very helpful for kids who are young and who haven’t been able to figure things out because of sensory issues or whatever. Their brains have not figured out how to coordinate all these, all these skills into doing some kind of physical activity. That’s physical therapy.
Occupational therapy… The word ‘occupation’ is really meant to be, like, life skills. So when you do occupational therapy, you’re talking about being able to write letters and words. Knowing how to cook something. You know? And all the skills that lead up to being able to cook something, you know, reading a recipe, being able to pour water into a bucket or into a pot…It’s just things like that. So occupational therapy can be very useful for kids with autism, and it can also be useful for adults and older, older people who don’t have certain skills that are expected of a typical person their age.
And then cognitive behavioral therapy is talk therapy. So that’s, um, that’s when, that’s the typical image of when you go to a therapist, you sit down and talk about whatever and they give you some suggestions. And so cognitive behavioral therapy is, is a very involved back and forth type of therapy. And that’s useful for older kids and adults who are able to communicate well and understand how their actions are impacting other people. So you don’t use cognitive behavioral therapy on autistic kids who are three or six or seven, because at that age most of the kids, that I’ve seen, are still figuring out how to act, how to be in the world. They’re still dealing with sensory issues. They’re still trying to learn how to communicate. They still have motor issues to work on. So talk therapy is not something you do when you’re still working on those basic skills. When somebody is old enough to say, “OK, I can ask for help. I kind of know things that I want to do, but I’m having issues with this, with this certain thing.” That’s when you can go to a cognitive behavioral therapist and say, “OK, so I want to do this better.” And that therapist can help you do that thing better.
ADHD. Initially, what I do want to say about it is that it really exists. It’s something that adds difficulty and it is something that can be managed with medication. It doesn’t have to be managed with medication, but medication is effective in helping the symptoms of ADHD. The other thing that helps with ADHD is what I — I try not to say ‘behavior modification,’ but that’s what it is. It is helping the child understand how to act differently so that they can manage their symptoms. So with ADHD, you have issues with attention and hyperactivity. So ‘attention’ means that they can either really focus on something that they really like doing and lose track of time, or that they find it really hard to focus on something that they don’t like doing. So this is not them deciding that they don’t want to focus on it. This is their brain saying, “Yeah, I’m not interested in this, I’m going to tune out.” So they really have trouble controlling that part of their self that says, “OK, I need to focus on this. I need to attend to whatever activity is going on.” Another thing that happens with kids that have ADHD is time blindness. So they can be watching a video, they can be drawing, and it may be one o’clock. And they look at the clock and say, “OK, it’s one o’clock.” It may keep going. They may look up again and it’s three o’clock. They — some of them don’t have any concept of time passing. They don’t have this internal clock that says, “Oh, I’ve been sitting here for 30 minutes, maybe I should get up and take a break or find a snack.” Time just passes. And then they look up and they have all these different needs and they’re trying to figure out how — how did this happen? How am I in this place where I didn’t get my needs met? So that can be something that’s really frustrating for kids with ADHD. Because they want to go to the bathroom and eat and go to whatever offering was at such time, but they may not be aware of time and they may not have the tools to figure out what time it is and when they need to go. So that’s what kids with ADHD often need support with. So a lot of people who have ADHD have parents who say, “Oh, well, sugar makes them hyperactive” or “this makes them lose focus.” Food doesn’t have a huge impact on ADHD. You can choose whatever you want for your kids, but it’s not a one to one correlation that they eat the sugary cereal and now they’re going to be hyperactive in an hour. There’s lots of things to consider like sensory needs, what time of day it is, whether they have people who are getting on their nerves, or if something stimulating is going on as to how they’re interacting in that environment. So I wouldn’t always jump to food or screens. If you think, “OK, this person’s being hyperactive,” you kind of have to think, “What is going on in their brain that this external thing may be making worse?” The other thing is that kids with ADHD understand that their hyperactivity or the loss of attention is causing issues, so they know that it’s a problem and they know that you don’t like it. So that’s — it really doesn’t help for you to remind them, like, “Oh, I already told you the offering’s at whatever time.” You have to kind of be patient with them, because they know that this is something that’s hard for them and they know that other people are not happy about it.
So when you have ADHD, kids with ADHD, it’s helpful to have the other kids know and understand kind of these regulating tools. So on the right here I have a picture of the zones of regulation. The zones of regulation uses a color code system to kind of talk about feelings and emotions. So you have blue, which is sad, upset, hurt or tired. You have green, which is happy, excited, calm, proud. You have yellow, which is nervous, surprised, confused, or silly. And you have red, which is angry, yelling, aggressive, mad. So when you have a community that recognizes the zones of regulation, you can see somebody who is like acting really silly and you’re maybe having your spawn meeting, and you can say, “OK, I see that you’re kindof in the yellow zone. We need everybody to be in the Green Zone. Is there something you can do to calm down? Can you go somewhere else with that energy? Or can you get like a fidget toy?” So you can when you have this kind of language, you can help everybody kind of help regulate their emotions.
The other thing is that you do need space for loudness and messiness. So if somebody is being just really loud and active, have a place where you can say, “Hey, go down there.” You know? “These kids are reading or these kids want to draw quietly. You can use this room for yelling and running around.”
The older the kids get, the more important it is to teach them these behavior-management things, and as adults, we know what behavior management looks like because we have these tools for ourselves. You know, we have calendars on our phone. We have to-do lists. We have little reminder apps. So all of those things are helpful for kids with ADHD, because you can’t change their brain, but you can change the actions that they take. You can help them get into the habit of doing things so that they can manage their symptoms. So. Yeah, the older kids get the more of these type of management skills you can teach them. And having them know how to ask for help and where their deficits are is the best skill, because the more they can ask for help themselves the more they feel like they’re in control of their disability.
And then when it comes to kids with ADHD, you should pick your battles. Some of our kids will forget every single day to take off their shoes. Or they will lose track of time. Or they will lose their glasses or their jacket somewhere in the building. Try not to get upset when those things happen. Just use whatever reminders that you use. It just you may have to remind them every single time, and that’s OK. Like I said before, don’t don’t don’t make them feel bad for what’s going on in their brains. Because they know that it’s a problem and they know that you probably don’t like it. And then when it comes to making agreements or making rules, is it really important for you to enforce that rule? So maybe you have a rule of taking off your shoes. If every day you’re getting into an argument about taking off shoes and the kid is like, I don’t want to take off my shoes, is it really important that you emphasize that part of life, of your ritual at the school? Is it really that important that you have to say you’re going to make a big deal out of it? So pick your battles. That happens a lot with kids with disabilities. Sometimes there are going to be things that they do that just frustrate you and you just have to kind of go with it. Because it’s not worth the struggle.
So these next two slides are visual supports. And these are what we actually use in our school. So because we have a lot of kids with ADHD and autism, we have a lot of things that show what we expect. And this can go from the really mundane like this, this image of a hand over a hot plate and there’s an X that’s like, “Here’s a hot surface. Don’t touch.” So that’s on ovens and the 3D printer and the heater. So that’s a really simple signal: don’t touch. And we have this poster: ways to calm my worry. So it talks about things that you can do when you’re worried. You know, that’s something that’s really simple. A kid can look at it and say, “OK, I can take a deep breath, I can talk to somebody, I can exercise.” And that’s just a reminder for kids who may be in a stressed state, and they see that and they’re like, “OK, I don’t have to think of things. I don’t have to reach for tools. I can just see those tools.” The one on the bottom is my favorite, because that was made especially for my daughter. So my daughter has a tendency, when she’s in a different room from me, to just yell. “Mom!” Just yell throughout the whole building looking for me. And so I made her a visual support that said, “Don’t yell for mom. Go find her.” You know, Courtney is eight. She can read fine, but I have words and pictures that kind of reinforce the point. “Just go in there.” And this is helpful for her, because it just reminds her what to do. So if she’s sitting in a certain room and she’s about to yell, if she sees that, she can think, “Oh, yeah. Let me go and find her.” The picture on the right is, “Can I use my phone?” So we have an — we had to make an agreement about using devices during school hours. So this was made for a kid who didn’t know how to tell time. So what I did is I printed this paper. It has the times in numbers and then it has the times. And I drew the clock hands on it. And then I have the green saying, “Yes, during these hours you can use it. No, during these hours.” So even if she didn’t know how to tell time, she could look at the clock and then look at this piece of paper and say, “OK, now is not a time when I can use my phone.”
Now the one on the left is a social story. So this is talking about preparing kids for when kids do not want to play with them or they want to play something different. And this social story uses random pictures of kids. You know, I have another one that uses pictures of Mario and Luigi, because that’s one of the special interests that one of our kids has. So just things that they can kind of relate to is good for social stories. So social stories: “I can play with others or by myself.” That says: “I have lots of friends at school. I like playing with my friends. When I play, I’m sharing. Everyone needs to share. Sometimes I want to do one thing and my friend wants to do another, and that’s OK. We could do different things for a while, then we can play together again. If my friend does not want to do what I’m doing, they can find another friend to play with. If I don’t have friends to play with, I will play by myself.” And this is just a really simple thing. You can read it to the kids and they get it. So now you’re explaining what happens in everyday life and what you can do in response to that. And that helps kids to kind of get an idea of, “OK, this is how I should manage a situation.” This next page… So here I have how to make popcorn. One of Courtney’s favorite things is making popcorn. This just has instructions for making popcorn. It has, you know, has words on one side and it has pictures on the other side. And the pictures include pictures of our microwave, so that it’s not a generic thing. It’s like, this is exactly what our microwave looks like and what you should press. And, you know, even though making popcorn is something that you can do over and over, maybe a lot of kids with autism and ADHD don’t get that kind of rhythm into their head. So just having something they can reference and say, “OK, well, this is how I do it,” that makes her a lot more comfortable. And it also helps me, because she doesn’t have to come to me and say, “Well, what do I do?”
We have pictures of stop signs on all of the doors: the door to the preschool room and then the doors outside. And that’s just a simple visual support saying, “Before you go out this door, you should ask somebody or tell somebody that you’re going out the door.”
We have our little choice boards. So this is just if somebody is like, “I’m bored,” you know, “What do I do?” We just have simple pictures. You can play, read, draw, go outside, make something, eat something, sleep, or watch videos. And these are little icons that kind of just like can can can bring up in their image, “Ok, maybe I can go get a tablet. Or maybe I can go find a book.” And that’s something that gives kids more agency. So instead of coming to a facilitator saying, “Well, what do I do?” they can look at that and say, “Ok, here are some things I can do.”
The middle picture — “Are you ready?” — that’s a morning routine. So we had a whole week of, like, hygiene. And so this is a simple picture that I found on the internet somewhere talking about what you do in your morning routine. And some kids find it really helpful to see pictures of what you do, step-by-step. And that reminds them like, “Ok, once this is done, I know I have completed my morning routine.” One thing that’s really hard for me is routines. I have very specific things that I have to do in the morning. And if I don’t do one thing, then I forget the other things in that routine. So when I get up and wash my face, brush my teeth, take my medicine and feed the fish, if I don’t take my medicine, I will forget to feed the fish. So that’s something else that is part of my autism is that if I don’t remember, if I don’t do something in a certain order, it’s not going to get done.
The other choice board we have here is our snacks. So we just have pictures of different types of snack foods that we usually have at the school. If we don’t have that snack, we cover that picture up with a Post-it note. So somebody says, “I’m hungry, can I have a snack?” We can show them that board and they can pick at it. That helps. That takes out a lot of the back and forth, the like, “Well, what do you want?” “I don’t know what I want. What do we have?” Going back and forth on that.
And then all of our tablets are color coded with the fish. So each tablet has its own fish and it’s a certain color and that’s just helpful. I don’t know what it helps with, but I’ve noticed the kids really like to say, “I want the blue fish” or “I want the yellow fish.” You know, they have most of the same things, but you know that that’s another support that we use.
All right, questions about visual symbols? I tell you, this is a really big topic, and so this is, this is one of the most effective things that we’ve used at our school is all of these supports. All right, now I’m going to jump back into going through these different types of disability.
So I can share the next one, and the next one to talk about is giftedness. And I consider giftedness with disability because it’s often comorbid with other disabilities, which means that a gifted kid may have ADHD or may have autism. Giftedness itself is something that takes the child out of the typical world. So when they have skills that are not expected for a child their age, they’re looked at differently. They may have some challenges with how they get around in the world. So that’s why I put this on here. When it comes to giftedness, it’s really good to teach self-help tools. So it’s good to help kids know how to ask for help, how to organize their day, how to do certain things, so that they can help themselves to get through, get through their day. Self-esteem maybe an issue with kids with giftedness. So a lot of times kids’ self-esteem is tied to their ability to pass a test or to know certain facts. And if that gets taken away or if that gets challenged, that means their self-worth is challenged. So it’s important to have conversations about what is value, what makes you a person, what makes you a good person, what makes you someone who’s worth being a friend to. And having those conversations to help the kid think, “OK, my self-worth is not tied to a grade. My self-worth is tied to who I am as a person and how I act in the world.”
It’s really helpful at our centers to talk about, you know, reflection. So I set this intention and then I did this or I didn’t do this. And why did I do it or why didn’t I do it? And, you know, kids who are gifted are usually really good at thinking out through those kind of steps. Why did I do this? Why did I not do this? And the more they can think about, “Well, I didn’t do this because…” the more they can say, “OK, well, next time I will do this differently. Next time I’ll ask for help.” Or “Next time I’ll…,” you know, whatever. So that helps kids, too. Helping them think through that process is helping them to help themselves later. Another thing with giftedness, kids may be afraid of the things that they’re not good at. That… You may see kids who are really excited to do something because they know that they’re good at it, but they may kind of avoid things that they’re not good at. So it’s helpful to help kids fail. And that means to give them a challenge, not — not in a testing way, but to encourage them to go through things or to try things that they may not be good at. Because they may realize, “Even though I’m not good at it, I had fun doing it.” Or, you know, “I’m not good at it, but at least I tried.” And so those are really helpful things for kids to get into their heads when they’re thinking about what they’re good at and what they’re not good at.
To encourage collaboration instead of competition…So we really want at our center…We really talk about helping each other and getting things done instead of finding out who’s good at this, who is good at that. You know? Who’s better or worse. We let kids be kids.
So another thing that gifted kids may encounter is that they may be expected to be more mature than they are. They may be expected to make decisions that are above their age level, that are inappropriate for their age. So make sure that even though the child is gifted, they may be able to understand things or talk through things better, but that doesn’t mean that they’re ready to be an adult. They will still have the same kind of developmental things going on in their head, the things that other kids their age will have. But if they, if they are interacting with the adult world, they are doing things that require them to interact with other adults, be their support. Help them to be seen as legitimate or as worthy, I guess, to other adults. That’s a big thing that you can do for kids, with kids with high IQ, is that you can help other adults recognize their talents.
And then just to throw this in here is that giftedness is something that was developed in the 20s and throughout American history has been used as a way to segregate different races. IQ tests were initially developed as a way to prove that Black people were not able to do certain jobs in the military. So we can’t talk about giftedness in IQ without talking about racial disparities. And that’s a whole nother conversation. But I did want to throw that in there.
The other side of giftedness is intellectual disability. So intellectual disabilities means somebody has a low IQ — and IQ is not useful for us at our center, but we do use Adaptive Ability. So there are assessments that measure what are these people’s skills in certain areas. And those measures have been helpful for us to know what exactly a child is capable of doing.
Um…Some kids with low IQ have difficulty with impulse control. So you may see that, also in ADHD, where they’re acting without thinking about the consequences of it or they’re reacting emotionally and they need help regulating their emotions. A lot of these kids have black and white thinking, either good or bad. And you have to support them with saying, “Ok…” Support them with the gray areas, understanding what the grey areas are. They may have — they may not be aware of personal boundaries. So you may have to reinforce what people’s boundaries are. And again, you can use social stories, visual supports. You can talk to them about these things and help them understand. When you interact with kids with intellectual disabilities, it’s important to speak clearly, but you don’t have to speak really, really slowly. You don’t have to, like, draw out your words and pause after every word. You can speak at a normal pace. Just be very, very clear and sometimes repeat things. You can wait. You know, when you’ve asked and you’re waiting for a response? You can wait a little bit longer, because they have to process and then they have to think of what to say and then they have to figure out how to say it. So it’s helpful to give them time to process and respond. But you don’t have to dumb down your language or start speaking really slowly.
One thing that I think is important for kids is that you don’t call them “a 14 year old with a developmental age of a 4 year old,” because the truth is, is they’re 14 years old. So their body has all of these things, like puberty and whatever it is, happening. At 14 years old, they have already been a 4 year old. So their IQ may be lower than a typical 14 year old, but that doesn’t mean that they’re operating with the same skillset of a 4 year old. They’re operating with the skill set of a 14 year old with certain deficits. The biggest thing that I’ve learned with kids with intellectual disabilities is that math and reading are something that isn’t easy. You know? It’s helpful to know the developmental stages that kids go through when it comes to reading. And it’s helpful to know how kids learn numeracy, so how they learn to recognize numbers, to add, to subtract, to multiply and divide. So it’s OK if you’re in your self-directed space and other kids are picking it up, but some kids are not picking it up. They may need direct instruction. They may need a book. We use a lot of different books when it comes to phonics and to math. So we just kind of try and see what happens. But the biggest thing I’ve learned is that, yeah, there are people who have studied this. They know how to educate kids and it’s OK to go to those resources and figure out how people educate other people.
The last thing is that children of color, for whatever reason, are more likely to be diagnosed with intellectual and developmental disabilities. It’s not clear to me why. I do know that in the public school system, those kids are more likely to be put into separate, segregated classes and more likely to be disciplined. And they’re more likely to lose out on opportunities like field trips and whatever. So I think it’s important to know that if you’re, if you’re going to have kids with intellectual disabilities, that they may be coming from an environment where they were already seen as less than. And then you have to work really hard to incorporate them and to help to be a part of the community.
This is depression and anxiety, so you have kids or you may have kids who are diagnosed with depression, anxiety, PTSD, things like that. For these kids, it’s really important to help to communicate their needs, because if they get into an episode and — I don’t want to call it an episode… If they, if they’re really in a low place, they might, they may need help communicating their needs. And giving them shortcuts, tools, easy ways to show that they need help is is really important. So self-help tools, just like with ADHD. You want to teach them what they can do to help themselves. So thinking about calming strategies, places they can go, things they can do, like writing or journaling or drawing, you know, that helps them. It’s important to introduce those, introduce those when they’re not in a bad place. Introduce them when they’re happy, healthy, you know, when everything’s going normally, so that when they get into a place where they’re anxious or feeling really depressed, they can think about those tools and use those tools.
We had a discussion on the Slack channel about like what I call learned helplessness. It’s a child is is being really ambitious and doing a project. And then at the end of the project, like, well, “I don’t want to do it. I don’t want to present it. I don’t want to go. I don’t want to be involved in it.” That may be their anxiety talking. It may be that they don’t think they’re capable of it. Maybe that they’re really not capable of it…that you don’t know. You can’t really get inside a kid’s head. And are they doing this because they’re really nervous about it, or are they doing it because they know they don’t have the skills to do it? So that’s when you kind of figure out what, what the kid’s track record is or what you know about them. If you can help them get professional help to understand where their capability is versus where their ambitions are that’s helpful. But you won’t always be able to tell just looking at a situation why they’re not doing something.
When it comes to depression and anxiety, I think a lot of facilitators have dealt with depression, anxiety. It’s important to, for me to maintain the boundary of an adult and a child, or someone who’s not a relative, and kind of keep the personal things in my life personal. That’s not to say that the kids don’t know who you are and that you have disabilities or that you are taking medicine. But it’s not always appropriate to talk about things that you’ve been through with kids. If some somebody is really anxious and worried or they have, like, a fear of swimming, you know, you’re not going to sit beside them and talk about all the times you’ve been swimming and that one time you felt the manta ray or the shark at the beach. That — that’s just not appropriate, because you’re not helping the situation. So have boundaries. Kind of understand where your role as a parent or as a facilitator is. And that goes into when you’re talking about issues like suicide or harming others. If you are part of an organization, if you’re a private company or a non-profit organization, you do have some responsibilities as far as reporting goes. And so it’s important to know what your responsibilities are so that you can act on that. And that’s just really from a legal perspective and from, from a legal perspective, and a, I would think, from a wanting to help that person perspective. Relationships are really important, but there are times when you have to be somebody who is employed by an organization and to do what the law expects you to do. And while we haven’t had any of those situations where somebody threatened suicide, we have had a student threaten one of our facilitators, and that was really stressful time.
Now, physical disabilities. And this is like the catch-all category, because I have cerebral palsy, deafness, blindness, dyspraxia, epilepsy, etc. So these are disabilities that are not brain-based. I mean, cerebral palsy is brain-based…These are disabilities that affect how people interact with the physical world. They’re not necessarily neurological disabilities. All right? So when it comes to these disabilities, I think it’s important to know what your space is capable of and what your facilitators are capable of. And the biggest thing that’s helped me is hearing from adults with disabilities and what their school experience has been like. So, for instance, deaf people don’t all lip read. And it’s not effective to expect them to lip read for the entire day. If somebody is deaf then they need to know, they have things, you know — They’re going to be able to communicate, with sign language or some other method, and you need to be able to understand them and communicate back to them. So if you’re going to have somebody who’s deaf or hard-of-hearing, then you should consider learning sign language.
Wheelchair ramps are not always accessible. So, wheelchair ramps are often used to kind of make a building look kind of cool or interesting, and sometimes those wheelchair ramps, in actual practice aren’t actually actually practical for wheelchair users. So if you are setting up a space or you’re evaluating a space for your center, I would have somebody who’s an actual wheelchair user navigate that space and give you feedback on whether it works for them or not. Same thing with people who use canes or walkers or other type of mobility devices. And another important thing with wheelchair users and people who use devices that…Don’t don’t “help” them. You know, you can hold the door open for them, but don’t touch their wheelchair. Don’t start pushing them. Don’t. Don’t grab things or try and… You know? Always ask before you do something like that, because you have to recognize them as a person who has their own capabilities and knows when they need help. To recognize that they are going to ask if they need help. You know? Never touch somebody’s wheelchair thinking that you’re helping them.
A lot of our buildings are going to be governed by ADA. Americans with Disabilities Act. Guidelines for…Those guidelines are the bare minimum. Those guidelines are not going to actually tell you how people with different disabilities are going to be able to access that space. The biggest thing with our building is that it’s — First of all, it doesn’t meet ADA guidelines anyway, but it’s not accessible to wheelchair users. So that’s something that we have to be kind of honest about, saying that this space is too small for a wheelchair, to navigate, and we’re not going to be able to accommodate children with them, wheelchair users. It’s important to know just because somebody has a disability in one area…Unlike autism or ADHD, you know, blindness or deafness is not going to affect their intellectual capability, is not going to affect their social skills. So don’t assume just because they have one disability that they have other disabilities.
And then when you have kids who are typical versus kids with disabilities, you want to make sure those typical kids are not making fun of that kid. And this is something I talk about later when it is really important, even though we’re in a space where the kids are being themselves and we’re focusing on relationships, there are times when you have to step in and say, this is not right. This is not a good way to treat people and I don’t want you to do that.
All right, that’s physical disabilities. The last one is trauma. So these are kids who have PTSD, who have been in traumatic situations, who are dealing with the effects of what they call Adverse Childhood Experiences. First of all, children who have other disabilities are more likely to be mistreated. They’re more likely to be abused, to have have been in situations like homelessness or situations where there is, like, emotional trauma, where they have anxiety and depression. So children with disabilities may already have symptoms of trauma suffering. The spaces are not the cure all for trauma. And this is something that we learned the hard way, is that even though you’re giving a child a space to be free and to use their agency and to help themselves, you may have all the tools in the world but you’re not a professional. You’re not able to to fix things for them. You’re not able to help them work through their trauma. And you may actually hurt them more by trying to “help” them through their trauma. So it’s important to understand when it’s something that is really, really, really needs professional intervention. And it’s important to have those resources available, or at least to be able to recognize when you need to go to a different, a different step with that kid. If you do have children with trauma, it’s important to help them feel safe. So you’re trying to avoid triggers to their trauma. So this does need — where you need to know a little bit more about the specific trauma that they’ve been in, but that’s not something you’re going to force out of them. If you can talk to their parents… If you can give them a space where they can be quiet and calm and happy, just give them that space. And if they want to talk about it, then you can be a listening ear just like with the other kids. You can teach self-management self-regulation tools. So you can teach them how to recognize when they’re upset, when they’re sad, and that, and what they can do about those feelings. And then you can just be a consistent presence to show that the adult world does have some people who are trustworthy. There are kids with trauma who do act out and do hurt others, either through bullying or by abusing other kids or kind of reenacting a trauma in a way that hurts other kids. And so that’s something where you have to be really aware of what that child is going through, what that child is doing, and then what professional resources they’re getting. And you have to evaluate if, if their actions are going to be a good fit for your center. So we’ve had kids that ended up where it’s like we have to monitor them, because they’re going to steal something, they’re going to destroy something, they’re going to hurt another child. And our space is not set up for us to be supervising every single kid, every single space. And that’s when you have to draw a line and say, OK, we can’t have this child. This child is not a good fit for our space. And then when it comes to reporting about neglected and abused kids, you do have to note the legal obligations. Yeah, I’m not going to say more about my opinion about how the reporting goes, but there are some guidelines, depending on what type of organization you are, where you have to report if you are aware of or suspect abuse or mistreatment of a child.
All right, so the last part of this is to talk about treatments in general. And what I say here is it’s OK that parents feel a sense of loss when a child is diagnosed. The parents are going to go through, like, a grieving period when they figure out that their child has some type of disability. And that’s OK. It’s OK to believe that some symptoms are exacerbated by the environment, by food, by screens. It’s OK. The parents believe that or think that something is making their child’s symptoms worse. It’s OK for parents to seek ways to manage their child’s symptoms. So parents are going to probably be looking at every website in the world about their disability and just trying to figure out ways to help their child. It’s OK to disagree with another parent about treatment. I guess I have a strong view against ABA, but they’re are going to be some parents who are sort of like “I just need something that’ll help.” And I would never tell a parent, “Don’t do this because I read on the Internet that it was harmful.” So I’m going to tell a parent, try what you think is best and then listen to the kid and see what they see, how they feel about it. It’s not OK to use treatments that cause harm. And so we know that there are some treatments that cause harm. If you go into some mommy groups on Facebook, there are parents who are giving their kids bleach and then there’s people who are starving their kids based on this idea that they need certain vitamins to “overcome” their autism. And so those treatments are not OK. And so the best way to understand if a treatment really works for people with that category of disability is to listen to adults with those disabilities and to to hear what their experiences have been. And to look at what practitioners are doing to incorporate views of adults with disabilities.
The last thing that I really want to talk about is like this performance, this idea of kids with disabilities have to show that they’re special or something like that. So a lot of times we expect kids with disabilities to have like this really cool skill. You know? Or to… Despite their disabilities, they went to college and blah, blah, blah. You know, some kids are just not going to do that. They’re not going to go to college. They’re not going to wow you with anything. They’re going to be kids. And it’s not fair to put that expectation on them that they have to be something super special. So in the slideshow, I have this picture of this kid. He has a little brother who has some type of dyspraxia where he can’t walk, he can’t use his own limbs. And so this kid has trained for a triathlon. And so he does triathlons and he’s like 13, 14 years old. But what he does is he takes his brother along on all the triathlons. So he swims, he bikes, he runs with the kid, with his brother, in tow. And I think that’s an example of like this inspiration porn. Like, this kid is not allowed to be a regular 14 year old boy. He has to be something super special because he has a disabled brother, you know? And who knows what the brother’s opinions are of all this running and swimming and stuff like that. Maybe he enjoys it. But why are we putting that expectation on his brother to do all of these things and help his brother be super special just because he has a disability? I think that’s unhealthy for both of the kids. So that’s, that’s the really important thing at this time.
But yeah, so that’s — we’re at three o’clock, so thank you for attending.
First audience question: so is R.P.M. ABA? And can you talk more about letterboards and potential interpretor bias?
R.P.M. , or prompted — rapid prompting method, uses the same foundation as ABA. So the idea of rapid prompting is that you’re telling them to do this thing, and they’re doing that action over and over. And they’re getting a reward whenever they do that action. So it’s still dealing with this external behavior or something that you do to please somebody else. So something typically you might do for rapid prompting is you might want them to say the word “bird” whenever they see a picture of a bird. So you hold up the bird and you wait a second. And then if they don’t say it, you say, “Say ‘bird.” And then if they don’t say anything, you say, “Say bird,” and you might move their finger to point to the bird. And then, okay they say “bird.” So you put it away and you bring it right back up. “A bird.” And so that’s rapid prompting, and it’s meant to kind of drill that pathway into their mind’s eye. Picture, “She wants me to say ‘bird.'” You know. “I sneeze, so…” “Somebody wants me to say ‘thank you.'” Or “I’m supposed to say ‘good bye’ at this moment.” So for me, what it does is it it takes away some agency, because here you’re drilling them on things that are not important to them, but on things that are important to other people. And that’s really the biggest problem I have with ABA-type methods, is that you’re not listening to the child about what they need help with, what they want to do. And you’re not — by doing these behaviourist techniques, you’re just teaching them to respond to a stimulus. And it’s not using, like, higher order thinking skills.
The letter board is different because it’s a method of communication and you do have to use prompting to teach a letter board. So a letter board is you might have a piece of paper that has all the alphabet and some numbers on it. And then you ask them a question and they start spelling a word. Or there’s, there…They might also have pictures. I say I want this. So sometimes people use rapid prompting or ABA to teach how to use a letter board. And I think that’s OK, because it’s — the end goal is not to have them point to letters. The end goal is communication, which is very important. I read about this thing called facilitated communication, which is where you have somebody who is interpreting for the child and it may be based on letters or based on pictures or whatever. From what I’ve seen, with adult autistics who who are nonverbal or non speaking, you know, those are effective ways to communicate. Sometimes somebody’s helping them is just helping them. You know, as you go down in age, you know, it may be that the facilitator wants certain things to be said. But when you have a kid who can point to letters, you know, there’s a lot more of their individuality going on in that. So if you switch facilitators and you can probably tell if it’s the child who’s communicating or if it’s a facilitator communicating. So I think for the most part, any kind of forms of visual communication are actually very effective for kids.
How do you support kids who like routine when plans change?
So a lot of autistic kids have trouble with flexibility and that’s just something you have to work on. Step by step. So if you’re doing your Set the Week meeting, or Set the day, and you say, “OK, well, we’re going to do this, this and this,” I would always caveat it, especially if I know the kids who are doing the offering, I’d be like, “OK, well, this child may not want to do it at two o’clock and something else may happen.” Just kind of preparing them for a change. If I haven’t prepared them and something happens, all you can do really in that moment is just kind of soothe them and kind of say, “OK, I know it feels bad. This is not happening. I know you really wanted that to happen. Let’s go find something else to do.” So distraction can sometimes work very well, because really it’s just the expectation and it’s just the feelings from that expectation being broken. That’s bad. And that’s what they’re feeling. So if you can get them to redirect or go to a different activity without them getting upset, and that’s great. If they’re upset, then you have to go into all these tools about helping them not be upset and talk about that a little bit later. Yeah, so and then after that, and in general, what I like to do is this, is one of the things that you can use a social story for is I say, “All right, we’re in a self-directed space. This is our school. Kids can make offerings. So kids choose activities. Sometimes when that time comes for them to do an activity, they don’t want to do that activity. Sometimes they find something else that they want to do or they’re stuck doing this. And when that happens, it’s OK because we can still have fun doing this activity.” And that’s a social story. And all you have to do is say that and explain to them and they get it. And they’re like, “OK, that makes sense to me.” And so when something like that happens, you can remind them to remember sometimes kids get stuck in something and they don’t want to do that activity. And that is really effective for kids with autism because they’re like, “OK, you explained that to me. Now I understand. So maybe I could do something else now.”
Have you ever had kids who you didn’t have the resources to support?
So we’ve had two kids who were having what we called behavioral issues. So whatever their disability was, it was related to how they interacted with the world. And, you know, it was it was hard because they wanted to be a part of the group and be friends with people. But they also had things that triggered them and made it very difficult for them to be with other kids. If they got together and they started yelling, they would get really aggressive. So things like that were really hard to deal with. And what we tried to do was to start this — like supervising them. Just like, I would be there, wherever they were, and if they moved to a different place, I would follow them to that place. And you can imagine what effect that has on a scenario when I have to be where this one person is and I can’t attend to all the other kids and what ever else I want to do. So that was really stressful, just following those kids around. And so what we had to do, it was kind of a multi-step process with the parents of saying, “OK, this is what’s going on. This is what we think they need help with and this is what we’re going to do going forward.” And one of the kids, her parents were not receptive at all to the idea that she had trauma and that she had a behavioral issue. It was more like, “Oh, well, y’all aren’t doing this. And the other schools didn’t do this either. And, you know, you’re not — you should treat her better.” Or something like that. And that’s a situation where, if the parent isn’t on board with helping the child improve then there’s nothing you can do. I mean, yeah, we have them for six hours. I can maybe throw some tools that I know at them. But really, it has to be the whole environment, their whole community helping them to be a better kid. And so if the parents are not on board, you know, that was when the mom came to me and said, well, y’all are the ones who are bullying her. For me, that was like, OK, this child is not going to be a good fit. We just have to let her go. And that was a really difficult conversation. The other parent was was really clearly aware of what was going on with her and she was mouthing “I’m sorry” and all of this stuff. Like it was — it was a really violent situation and it just was not going to be fixed by more conversations. And so… Yeah.
So you would confirm that all kids have interests and curiosity?
I think all children love to play. And as ALCs, you recognize that play is learning. And so if you have a child who, you know, may be an older child but they have a disability, their play will look different. They’re learning. They may not be interested in learning things that a typical kid their age is learning, but they’re still wanting to explore the world. Know they’re still enjoying what’s being offered. Kids with autism can be very direct about what they want to learn and what they don’t want to learn. My daughter is really famous for like, I’m offering something? She just gets up and walks out of the room. And that’s that’s fine. That’s just how she’s expressing herself. She’s not even expressing; she’s just being clear about what she wants and doesn’t want to learn. As long as you can kind of get over the idea that these kids would always say “please” or “thank you” or phrase it in a nice way, you know…They still want to learn. The biggest thing with kids with autism is that if you have, like, restricted interest, some — something may not be interesting to them unless it comes through, like, an avenue that they’re already interested in. So, like, we have one kid who really loves, like, Mario. The Super Smash Bros. characters. And so if you introduce something in that kind of aspect , then yes, it’s interesting to him. But if it’s not introduced that way, then, you know, he may not be as interested in it. Most of our kids are not, like, super interested in politics, you know? Kind of big, big deals that go on in the outside world. And I think that’s just because, as kids with disabilities, they’re still navigating their own personal worlds and their family and stuff like that. So we don’t have a lot of offerings that are like really big topics or big cultural things. But they definitely find things that they want to do. They will look to me for things like activities. And so I’m constantly trying to find something that they might be interested in. But then once you find something and if you’re making an offering, you do have to think about the accommodations that a kid might need. So if they have intellectual disabilities, you may need to write out the directions. You may need to — the word is differentiation is — it’s a way you kind of aim it at their capability so that they can do the activity and still feel like they’re part of it. But you’re not putting out these expectations that they’re going to do the same thing as a typical child. So you have to have a little bit of planning when you’re making offerings. And if another kid is making an offering, you may want to jump in and say, “OK, this kid might be able to participate if you do this.” So you can kind of do things like that. But they’re still — they still want to play and they still learn a lot. The biggest thing I think is negotiating with parents and their expectations. You know, they may still think that it’s going to be like “the miracle” that helps them to learn everything. And it’s just good to be honest about certain disabilities and that that does mean that they’re not going to be capable of learning certain things. But they’re still capable of learning.
So I run into this desire that I feel from the parents to show growth, to show that they learned something. So I kind of try and make that a buffer between the parents and the kids, by giving the kids space to, like, explore and do their thing and then have the parents — help the parents understand, yes, these kids are learning things or they are improving on certain things without me putting that expectation onto the kids that they’re doing that. I don’t have to name those things for the kids. I can name it for the parents, but I don’t have to deal with that when it comes to kids.
It seems like accessible design benefits all of us.
I listened to this podcast about curb cuts like that, like how they’ll day, take a curb and like, cut it. So it’s like more of like a ramp for, like, wheelchairs. And they talked about how when, when that was first done, they thought it was just, you know, only going to benefit wheelchairs. But then they started to, you know, study how it was used and they really realized, oh, yeah, there’s like people with all kinds of mobile needs, whether it’s a wheelchair or it’s, you know, a skateboard or a mom with a stroller or a delivery person. And so, like, even though I think a lot of these things that you’re talking about are for specific individuals with certain needs, it actually starts to have a ripple effect of like helping many individuals in maybe unseen ways, because we all have different ways of like accessing information.
Yeah, definitely. And that kind of goes back to the social model of disability. Is that we’re, as a society, we think, “Oh, the child or the adult can’t do this because they’re not able to.” But really, if we look at some of the things that we do in the, in the world, and if we change some of those things a little bit, then it can actually help people just being people.
Are the hygiene and other social lessons you offer mandatory?
Yeah, so I typically will use morning spawn to kind of like throw in like my life lesson of the day. So I will plan things for each group of kids as far as academics or whatever offerings I plan to offer, but spawn is really the time when we say, OK, this is something I think is important and required and whatever. And so everybody comes in to spawn and I say, “OK, well, this is what we’re going to do.” So when we did hygiene each morning, it’s fun. I was like, OK, we’re going to practice washing your hands. We’re going to talk about brushing your teeth. We talk about morning routine. So that’s something that I usually throw in spawn, because that’s the only time when all the kids are together and that’s really the only required thing, social skills. And then academic skills… Those can be like, offerings that I’ll offer to a smaller group of kids. And those are, those are still optional, where they can decide they want to do that or they don’t want to do that.
What was I going to say…Yeah, the one thing that we do kind of require, we do still require reading and math lessons. And one is because most of our kids are still under age 10. So, you know, most of them are still working on reading and math. And the other is that we recognize that part of being independent or part of having agency is being able to have those basic numeracy and literacy skills. So I do work with each individual kid. In a little time that we call like, what does she call it…She calls it “learning time.” You know, that’s a learning time where we work on math skills and reading skills. And it’s still going to be like, “OK, you can choose how this goes, you can choose what method. You’re not feeling it. We don’t have to do it.” You know, still kind of an SDE kind of feel. But it is something that’s kind of required is that we work with each kid, wherever they are, on their reading and math skills.
How much do kids know about each other’s diagnosis?
You could have you know, we have had several opportunities where we talk about disabilities. And when that comes up, I give the children the opportunity to self identify, to say, “Oh, yeah, I have autism.” Or “I know I have ADHD.” And for the other kids, that’s helpful for them to be able to own that because, of course, they’re aware that they have difficulties in areas. So when they can, if they have… You know, it’s never required for them to say something like that. But if they if they do want to say it then they feel a lot more in control and, you know. My daughter likes talking about some of the things that she deals with in her life. But in general, I don’t disclose diagnoses of other kids to other kids. So as facilitators, we do a lot of talking with the parents and we have a lot of documentation about what specifically they need. But we don’t have any of those conversations in front of the kids. We don’t talk to that kid about their specific needs. Like I wouldn’t talk to a kid about the medicine that they’re taking in front of other kids. You know, they see me using different tools with kids. They see me adjusting my approach with kids. And so they may ask about that. And that’s when I can explain, “OK, well, her brain works differently. And so sometimes I need to help her with this or sometimes she needs help with that.” So that’s the only kind of time when we actually talk specifically about a disability is when we’re saying this kid needs this type of tool or this tool is helpful for that kid. And we don’t really go into why. It’s just like, I know this kid and they trust me to, you know, to know why I’m adjusting my approach with the kid.
How do you manage cleanup?
So we have failed at having like a regular chore day, but when we do ask people to participate in cleanup, we generally ask kids to clean up their own mess. And if we’re giving out jobs, we say, “OK, I know you can do this. So you wipe the table, you go sweep the floor.” You know, if I know my kid has motor issues where they can’t sweep, I’m like, “OK, can you wipe down the toilets?” And those are just, it’s just, it’s part of our regular conversation, of being aware of what kids can and can’t do. So, you know, they know, “OK, so she’s asking him to wipe the toilet,” so to speak, “because maybe she knows that he can.” So, you know, we’re not going to tell a kid, “Go do this” and then watch them fail at it. You know, we’re kind of building in that accommodation, I guess it is. So… We prompt. So, a strategy, I guess, for me is reminding kids what we’ve taught them. So if it’s like taking off your shoes when they come in, they run into another room, we’re like, “Take off your shoes.” You know, those kind of reminders are just a daily part of our life. So, cleaning up is the same way. So if somebody eats lunch and then they run down to the makerspace, it’s like, “OK, clean up your lunch.” “We clean up our lunches.” Stuff like that. So. Yeah, that’s what we do. We also have pictures for cleaning and sweeping and stuff like that, so.
A final note on parents…
The only other thing I want, I want to emphasize is that parents will be at different stages of awareness or disability acceptance when it comes to their kids. And so that’s another kind of relationship thing that you have to walk through, because some kids, some parents do not want to help. They don’t want help. They don’t want to acknowledge that their kid needs certain accommodations. So you kind of have to be in a relationship with saying, “OK, I know this is what you expected them, but they’re not capable of doing it. And so this is what we do at school to help them do that.” You know, we have some parents who expect them to sit down and do worksheets all day. And we’re just like, that’s not what we’re doing. That’s not how they learn. That’s not what they want to do. And, you know, maybe they don’t have the motor skills to use a pencil. So we really try and help parents understand and then send them resources about disabilities and what they can do. And then we just have a list of professionals who can explain different disabilities to them and help them and their kids get into therapies.