Partnering with Schools for Inclusion (Part 3 of 3) with Dr Melanie Heyworth

Partnering with Schools for Inclusion. Part 3 of 3

In this final part of a 3-part series on partnering with schools for inclusion, we continue by exploring some specific ways that parents can build partnerships with schools to achieve the inclusion that our Autistic children have the right to expect.

There is also a Q&A session which focusses primarily on accommodations and support.

The audience for this presentation is primarily parents and carers of Autistic children, though education professionals might also find the contents relevant to their work.

Note that this presentation will refer to Australian laws and to the specific Australian educational context.

Transcript

A lot of the information I’ve given is about having the best, you know, the best ideals for what’s going on, for what you want about, for what you want for your child. And now let’s talk about how you might form some partnerships to achieve this kind of inclusive ideal for your child. A lot of this is about you giving information. You have the best knowledge of your child and your best option with schools is to make sure that they have access to your expertise and that you exercise that right to partnership. So that’s why I started, and that’s why it’s really important.

The first thing is choosing wisely and asking questions. So if you have the opportunity to choose the school for your child, and I know we’re getting towards the point where we’re about to get into the school year, so the likelihood of you choosing a different school at this point is probably fairly low. But just in case and in for the future, choose the school wisely. And when you are choosing the school, ask questions. Ask about aids. Ask about the social emotional learning and what bi-directionality, what role teachers have to play in their own social emotional learning and in modelling social emotional learning. Ask about the presumption of competence. Ask about UDL. Make sure that you’ve got a full picture of what those pillars of inclusion look like in the school.

The second thing is read policies, especially around discipline, bullying and wellbeing. So make sure that you understand the policies at your school, the school policies around, particularly, as I said, discipline, bullying and wellbeing, because that will help you to proactively anticipate any issues that there may be with your child. You know, I’ll come back to classroom rules in a second, but this is very similar. If it looks like discipline, as I said, the euphemisms of a timeout space, even if it’s called a reflection room. You know, choose ways that you can help your school to understand the difficulties that that might provide to your child. So policies are really good. The more you know, the easier it is for you to understand. Often schools don’t actually enact their own policies, so it’s actually really good to have read the policies where you can actually point to something and say, well, actually in your policy it says this about wellbeing. And so I want you to do this to build my child’s wellbeing in the way that you’ve described here. So knowing the policies really well is really good.

Clearly knowing your rights, the UNCRPD, the DDA, the DSC, you have the right to be an active partner. You have to decide now what that’s gonna look like for you. How will you be an active partner? Are you going to be like me and be the parent who’s out there every day with the policies and, you know, trying to advocate for your child’s inclusion? How are you going to do that? Are you gonna be the sort of parent who monitors through, you know, volunteering as a, you know, as a read, somebody who helps little people to read, or in the library? In high school, it’s a little bit different. In primary school, it’s a little bit easier.

One of the big things, one of the big tips is to establish what are, you know, your modus operandi early? Make sure your school knows how you like to operate and make sure that you’ve got before the school year starts, before your your child is fully ensconced in the school year. Make sure that you have agreed expectations on things like bi-directional communication. So it’s not just that, you know, I want to talk about if you are teaching my child social skills, I want you to talk them to them and tell them that it is a non-Autistic social skill and this is the reason why it builds that their organic sense of what an Autistic social skill is. It’s not asking ’em to mask or conform. It’s telling them that this is, you know, there’s a cultural norm around non-Autistic social skills. Make sure that you’ve got those kinds of things really early on written down somewhere, and that you’ve got agreed expectations on that.

Other questions you might wanna ask around disclosing Autistic identity. How are they going to do that? What would you like that to look like for your child in their classroom? And it’s a good time to think about that. Will your child be out and openly Autistic and how is that gonna be disclosed to their class? And again, it depends on, you know, in high school that looks very different than in primary school. Obviously in high school you change classes and that’s hard. What will it look like for your child? What do they want and what do you want for them? You know, it’s much easier if you can be out and proud Autistic than having to be, you know, repressing that or not acknowledging that when things go happen. You know, give them a guide for respectful language Use. What language do you want to use? Do you want to use identity first language? Please don’t use, you know, my child is not a person with Autism spectrum disorder. I don’t want that language used around them. Disorder, it gives them a completely wrong message and we’re trying to build their sense of their self and their identity. So you can call them Autistic, you can talk about Autism, but please don’t mention the word disorder. Make sure that these kinds of expectations are set up really early on and you might need to set aside a couple of hours to sort of put aside, not just to tell teachers what you want and schools what you want, but the reasons why. Because actually one of the things that we forget sometimes as parents, I forget, is that schools also want what’s best for our children too. And so if we can, you know, articulate the reasons for some of the things that we’re asking for, sometimes that’s rather than just the demands, but the reasons behind those demands, that’s gonna be very helpful.

And then make sure that you’re modelling your expectations in your own behaviour. So, you know, when I often went to school, people would talk about Autistic behind their hand, and I would in the biggest boom voice go, I’m Autistic. And so, you know, so, you know, modelling, making sure that you own those decisions in your own behaviour as well.

Be proactive, not reactive. So often schools are very reactive. They wait to something to happen and then react. So your job as the parent is to be proactive, to anticipate and plan before issues occur. You know, if you are able to access other parents who have Autistic children in the school, talk to them about what the potential pain points might be or what their children have found difficult so that you can see if it’s gonna be difficult for your child or challenging for your child. And you can put a plan, a proactive plan in place. So keeping in mind that schools are very often reactive, what do you need to be proactive about to protect your child and to provide that inclusive environment for your child? So it’s really important to try and anticipate the sorts of things that might be an issue before they become an issue. It makes a teacher’s jobs easier as well, and they love you for that. So that’s a good start.

Okay. Oh, here we go. Write it down. Any meeting you have with the school, a teacher, an aide, anybody associated with the Department of Education, write it down, write down what happened, and make sure you get their consent or their confirmation that your understanding is correct. So you’ve had a meeting, you write down, here’s what we covered in the meeting, and here is my understanding. Make sure you know who is responsible for any action, where it will occur, when it will occur by. So make sure that it’s got a time, date on it and how it will happen. And as much as we don’t want to think about, you know, needing to put in complaints and things like that, it’s really important to establish a paper trail that’s signed off by the school. That’s gonna be really key to making sure that the school feels accountable for what’s happened. So make sure you put it in writing. And it may be emails are very easily ignored.

So this is where I fall down ’cause I would love to do everything by email and never have to phone call anyone. If there’s a phone call, make sure you write it down. But you need to actually take a hard copy of the meeting notes and you know, your summary of actions, as I said, who’s responsible, where it will occur, when it will occur by, how it will happen, and get, you know, whoever was in that meeting to sign off on that, a physical signature in the room with them where they can’t escape and say, well, or where you can discuss if there has been a miscommunication.

So one of the things that, one of the big breaches of trust for my children, one of my children, was when they wanted a pen licence, they were in year four, they thought they deserved a pen licence or they wanted to be able to use a pen, and their penmanship skills were not good enough. And so they were not being given a pen licence and they wanted that pen licence because they felt that the rule was you couldn’t use a pen without a pen licence. You know how it goes. And the school committed to providing them with a pen licence, which would’ve taken this long. Four weeks later, we still didn’t have the pen licence, and that child was still using a pencil, which was onerous and horrible for them. So knowing who’s gonna be responsible for providing the pen licence, when that’s gonna happen by, it should be a day, you know, like it’s pen licence, let’s face it, they can do it for other children. Making sure all of that’s written down and signed off because then you can go and say, look, this is what we agreed to what’s happening? Give me an update. What’s happened? You know, what can I do to help you to make this happen? So that’s really important.

Safety in numbers. Always go to meetings. And this is partly about the writing it down. If you’ve got a meeting, always try and take somebody else with you. Try not to go away alone. Particularly for us as parents of Autistic children, we will often have on the other side of the table, multiple people, you know, involved from the school end in any particular meeting. And then there’s might be one of us. And the power differential is huge, and it does undermine our feelings of self-efficacy and our feelings of control. So for some of you that might not be necessary, but I would always take an advocate, a partner, a friend, a therapist, a number of those things. You don’t have to justify why you’ve taken a support worker or a support person into a meeting with you. So you can take a friend who has absolutely no intention of saying anything, but who takes notes for you. You don’t have to justify why you put that person into the meeting with you. It’s just a really good way of ensuring that you don’t miss anything. But if you get emotional, you’ve a got some emotional support, but somebody else is also listening, because sometimes there can be really high emotional, emotive meetings for us as parents. So making sure you’ve got that.

And sometimes it’s better to have someone who’s one step removed, you know, having your partner with you that your co-care giver can be emotive for both of you and you can miss things. So it’s all of that kind of stuff is really important. This is one that took me a long time to learn. Stroking egos helps. So I would often go and tell the teachers that, you know, they were doing, you know, that I know that they were so busy and I’m so sorry to bother them yet again. But, you know, terribly busy and I know you’re terribly busy. But it took me a long time to learn that actually they were never going to be my friend. They were never going to accept me in that kind of, you know, the power differential is always going to be there. So stroking egos does help often, but our role as parents is to advocate, not to befriend. And we advocate best when we think about our rights, when we think about our children’s rights, when we think about what we want for our kids, you know? So that’s gonna be really important. But with that, don’t be afraid to give unsolicited positive feedback. So part of the stroking egos is not doing it in an unconscious kind of way, but when something good happens, very few parents mark it out, note it. So if something good happens, write, say, you know, ring, thank you so much. That was brilliant. It worked so well when you did this. Even if it’s a tiny thing. He had a great day today because you said these two words in giving him feedback today and it made his day. That was the one thing he came home to tell me. Just wanted to thank you for that. It’s really important to build those positive relationships, sorts of relational connections as well.

And help the school to know your child. We’re always gonna be advocating for connection between our teacher and child, but you know, so what are your child’s passions? You know, doing a letter, you know, this is my child, this is me and these are my sensory needs, these are my signs of overwhelm. All those sorts of things. That’s all packaged up in you helping your school to know your child. What are they going to see? What’s the sorts of things that they might look out for? How do they connect with your child? What are their passions? What would be really frustrating for your child to hear? What might be triggering? Those kinds of things. How can they build trust? Because in order for your child to learn, they have to feel safe. In order to feel safe, they have to have trustworthy adults. You know, how can a teacher or an aide, or a wellbeing coordinator or anybody else build your child’s trust? For me, it was always, you know, spend 10 minutes every day talking about their passions and being a learner from my child before you try and teach them. It was always my tip. Whether teachers do it or not sometimes remains to be seen, but it’s nevertheless an important one.

Okay, I can see that I’m really running out of time. So this is more like me. Identify, so part of that is identifying your child’s overwhelm signs. So what might a teacher see if your child is experiencing social sensory and or, might be all of them, demand overwhelm, what might they see? Do their stems change? Does the volume change? Do they have a particular noise they make? Giving the most information you can to your kids’ teachers about what it is that they might see that can help them to diffuse situations is really good. Helping your teachers to understand what are is relevant and timely preparation. Now, for all of our children, there’s a sweet spot between enough preparation that they can prepare, but too much preparation time where they just get anxious. You are probably the person other than your child who knows that sweet spot best. Make sure that you communicate that to your, you know, what is it that, how much preparation do they need? How much preparation time do they need for, say, a change in their timetable or a change in teacher? And when is it going to just produce a lot of anxiety if you said that earlier. And what are they gonna need to prepare? Are they a visuals person? Are they a social story person?

Okay, I can see that I’m really running out of time. So this is more like me. Identify, so part of that is identifying your child’s overwhelm signs. So what might a teacher see if your child is experiencing social sensory and or, might be all of them, demand overwhelm, what might they see? Do their stems change? Does the volume change? Do they have a particular noise they make? Giving the most information you can to your kids’ teachers about what it is that they might see that can help them to diffuse situations is really good.

Helping your teachers to understand what are is relevant and timely preparation. Now, for all of our children, there’s a sweet spot between enough preparation that they can prepare, but too much preparation time where they just get anxious. You are probably the person other than your child who knows that sweet spot best. Make sure that you communicate that to your, you know, what is it that, how much preparation do they need? How much preparation time do they need for, say, a change in their timetable or a change in teacher? And when is it going to just produce a lot of anxiety if you said that earlier. And what are they gonna need to prepare? Are they a visuals person? Are they a social story person?

Are they just a verbal story person? So my children work best with just a verbal kind of cue. You know, do they need to text you so that you can prepare your child? This is going back to making agreements and holding school staff to them. You know, even questions like what constitutes a change for your child? So for my children change, you know, they can handle some changes really well, but some changes are going to be very big for them. So what constitutes change? What’s the list of things where you would need this kind of preparation? What are the agreed upon lines of communication between you and your child’s teacher? So often when we hear from parents, we hear that their teachers have just said, you know, yeah, you had a great day. Yeah, it was good. And that’s it. What are gonna be the agreed upon lines of communication? Is it daily? Is it weekly? Is it in a communication book? Is it by email? Is it by text? Do you have a phone call? Sort that out early so that, again, there’s these expectations.

Talk about what friendship means to your child. So where might they search for friends? Because schools often look within like a year group, but friendship might mean something much more broad to your child. So can they look to other adults in the school to be friends? Can they look to other year groups to be friends? You know, what can a child, your child connect to? So making sure that all, again, it’s all about information, making sure that your school has as much information as possible.

And I put this as 15, but it really should go back up with the policies, is reading the classroom rules. So this is particularly for primary schools. Read the classroom rules and discuss with your child’s teacher where the challenges for your child might be. What might they not understand? So often we’ll have things like respect each other, and my children don’t understand what that means. That’s not operationalised. It’s very abstract. So I could go and talk to my teacher about the fact that that’s too abstract. And what does that mean? What would that look like? And needing to unpack those kinds of things.

Okay, we’re nearly there. Whole body listening. Does your school do it? Or the five Ls? How does the question you need to ask is how does your child show that they’re listening with you at home, elsewhere? And then communicate that to your child, like, sorry, to your child’s teacher. The likelihood that your child’s is gonna be able to sit down with whole body listening with eye contact and still hands and quiet hands and still legs and sit there and with their legs crossed is pretty low I’m gonna suggest. So how does your child show that they’re listening? What are their signs that they’re engaged and listening learners, because their teacher needs to know what those signs are so that they have a visual cue that your child is engaged rather than trying to put them through, your child through that.

One of the biggest, the best questions, a great question is for us as parents and for teachers, is what does finished look like? Give that question to teachers. It’s both a good question for your teachers to answer when they’re teaching your children. So in a task, what does finish look like? What’s it gonna look like? What materials will you have used? What will it look like in front of you? Which parts will you have written on? And this is particularly in multi-step tasks, but it’s also really good for teachers to ask your child what finished looks like? What will finished look like for you today? Because often our kids have real difficulty transitioning away from tasks when they don’t feel it’s finished. But finished is another abstract construct. So we need to ask, be very specific about what finished looks like. So I’m just giving that you that a tip, that tip in your arsenal. It’s great also for gamers. If you’ve got a gamer at home, you know, what does finish look like? Sometimes it’s a level, sometimes, very rarely is it a time-based thing. So timers only work if they happen to coincide with what finished looks like.

Make sure that you’ve worked out what a safe space would look like for your children and establishing it. What would it need to include? Where would it be? Who would be in it? Who wouldn’t be in it? So there must be a safe space at school, a physical space. So make sure that you’ve worked with your school to establish that. And then the two big ones at the end, and I hope that I haven’t lost too many people are don’t remove accommodations. If accommodations are working, it’s a reason to keep them, not to reject them. So very often schools will say, we need to take that accommodation away now he seems fine. Our children don’t just suddenly become not Autistic or not anxious about school, or not worried about things. If the accommodations are working, that’s a reason to keep them, not a reason to take them away. So if your school says to you, well, you know, he doesn’t need to come five minutes. So, you know, it might be a gentle introduction to school. He doesn’t need to not go online with the rest of the class and enter five minutes later into the classroom because everybody’s nice and settled then. And he doesn’t need to see all the visual movement of people because it’s worked so well that he’s fine now and he’ll be able to do that. No, it’s worked so well. And so you keep that in place because that’s keeping your child from not being anxious when he first works into the classroom. So making sure that you are advocating for retaining accommodations that work. If they work, you’ve gotta keep them. And the last thing is, and this is a big one, to teach your children, sorry, your teachers breaks need to be when they’re needed, not when they’re earned. Too often in schools, we might have a visual schedule and with breaks put in them, that’s fine. But often when breaks are needed are when they’re not earned. When things are getting overwhelming or stressful. And often the behaviours, the Autistic behaviours, because we’re so overwhelmed, are antithetical to what our teachers would say when they’ve, you know, you’ve earned a break or you’ve earned something like this. So as soon as you can see that your, you know, your children, so all of those information they’re given, this is what my child looks like when they’re overwhelmed, you know, this is a safe space they need, this is our, again, our job to teach the teachers, breaks are always, whenever they’re needed, not just when they’re earned or not when they’re earned, it’s breaks, you don’t earn a break. You need a break. And you need to be able to feel trust in your teacher that you can take that break when you need it.

So one of the comments we often hear from our school is that our child does not seem severe enough to warrant accommodations. The teacher’s feedback is that he appears fine and is coping well in his mainstream class. Yet at home he’s in floods of tears about feeling left out and is wrecked with anxiety. What is your advice for how to manage this was a school and what should we say when a school tells us this? It’s an awesome question. Anonymous, and look we have how often does that happen with us? That our experiences of parents of and parenting and what happens to our kids is dismissed? So I go back to your rights to advocate for your child, you know, and to be a partner in the education. To be honest, one of the best ways to do this is to actually get a professional. So I would get a psychologist or a paediatric psychiatrist, someone who’s on your team to write to the school, to account to say, you know, that although your child seems to be able to, I mean, this idea of holding it together at school where it’s unsafe and then losing it and falling apart at home where it’s safe is just so typical for our kids. So getting someone to write down that this is a typical response, it means that, you know that thing, there are not enough accommodations at school, making sure that you’ve got some professional support, but we are often routinely dismissed as parents that we somehow don’t know what’s happening with our children, that it’s our parenting rather than the school. So sometimes just having that step removed of a therapist saying, you know, yes, this child is in distress, I put it down to the school. These are the accommodations. Some basic accommodations. Or ask for, you know, a psychologist or someone who knows your child really well to go in and do an observation in school. Some schools are not very happy about that, but again, you can advocate for your right to have that, your child’s right to have that done. So I would make sure, it’s very common. So making sure that you have professionals and support because it’s too easy for schools to dismiss us as parents, despite our rights to be partners. So continue to advocate as you can.

What specific accommodations and adjustments do I recommend for facilitating inclusion? I’m going to say that bi-directional thing is really important. So social inclusion happens when we talk openly about Autism, when we talk, when we celebrate Autistic and neuro divergences, as well as other differences. So making sure social inclusion happens when we’re really open about what Autism is and how we’re Autistic and what that might look like. And it also often happens when our kids often have social capital that’s not used. So, and you know, you might be a gamer or you might have a passion in, you know, in sports, in an area, our kids can often work because they’ve got such generosity of knowledge, they actually can work really well as sort of, you know, teaching their peers. So making sure that our kids seem to be set up as different but level rather than different and less than in terms of their social skills and what they have to offer their peers. So making sure that it’s not always, often we talk about mentoring, but our kids are always the ones who are mentored. And very rarely are they, you know, very rarely are they actually mentors themselves. So making sure that there’s that kind of level playing field that if you’re talking about, you know, putting our kids in a social skills course that you name it a non-Autistic social skills course, and you invite an Autistic adult or your child themselves to give a little micro Autistic social skills course so that you want your school to understand that every time they prioritise or privilege non-Autistic stuff above being Autistic, you facilitate social exclusion, not the other way around. So we really wanna level that playing field.

Some terrific accommodations. Yeah, I mean, look, that’s one of the, so another anonymous person said, you know, some great things, some of the greatest things that I’ve seen in a school is actually having an Autistic adult come in and talking about, and, you know, talking about the Autistic brain. So that, and actually working with some, you know, some groups with Autistic children in the class that set the Autistic children up as teachers and, you know, actually do bi-directional social skills. So, you know, when you ask how my day is, I think you actually mean, you know, what you ask. So I’m going to tell you. I don’t understand what small talk is. I’m not being unkind when I’m being honest. Honesty is a virtue. You know, like there, there’s these sorts of, you know, that the communication and social skills are actually privileged as equal to.

So those are some of the things that we can do every day in the classroom is to build that knowledge of, and identity and validating the Autistic, you know, neurology and identity and making sure that that’s absolutely suffused in the classroom. Other terrific accommodations actually are things like, you know, decluttering the classroom. So taking all the work down from the classroom and having special display books for the children that they can have for themselves if they wanna display their work and show off their work. So instead of having, you know, the clutter around the classroom. So there are some sensory accommodations that work really well, you know, turning a table away. Probably not one of them, but, you know, there are some things that work quite well too. Having a sensory pitch, you know, in the middle of a classroom where everybody can access sensory ’cause often our kids are given like a little toolbox, which is just for them, having a much larger, which is hard in COVID, but having a much larger availability for sensory things.

So again, we’re not targeting children and those kinds of things. So learning in the playground, social emotional education, opportunities for friendship. Is there legislation specific to the school’s responsibility towards this rather than segregating children who aren’t feeling like they belong? There isn’t. So, you know, it is part of inclusion, you know, it is part of inclusion, but that doesn’t necessarily mean it’s done. And it’s not necessarily articulated. And often, you know, when we talk about educational inclusion, social inclusion isn’t included.

So providing opportunities for friendships. Look, I think the Autistic definition of friendship is often much more, it’s usually less effective as in, you know, cuddles and skippity skips and playing together and much more information sharing. And what Autistic people often value in friends are passions or an interest alignment and a values alignment. So values being, you know, if you are a social justice warrior, you know, you want somebody else who feels as passionately as you about social justice. If you’re an environmental justice person, you know, you want someone who feels, who feels passionately about the same, you know, values that you do. And often that aligns with, you know, your kind of experiences as well.

So that doesn’t discriminate on age or race or any of the other things that sometimes particularly children’s friendships are very sort of tied to. So my suggestion there is that, you know, understanding what your child, what a friendship means to your child, and then helping your school to understand what that looks like. So if it is just an interest alignment, you just really want to talk about, you know, for my children, just wanna talk with someone who’s interested in Warhammer, that’s what you, you know, that’s what you look for. You go and talk to your school about what other the child is interested in Warhammer, because that’s gonna be where my child is gonna feel included. And like, they’ve got something to offer because it’s their passion and they know so much about it and they will feel like they have social capital, which they won’t, you know, if they’re forced to go into like a Lego or a chess club so often, you know, you’ll have clubs that lunchtime, but our children will have very little autonomy over which clubs they go to or what’s happening in that club. So making sure that our children have the flexibility and choice to actually articulate what it would mean to them, what they want to do, rather than just providing a recipe of things that might happen on the playground. But that’s not an easy one. And again, you know, we have to just keep advocating.