Understanding Parents of Students with Special Needs with Jenny Cole

Jenny Cole: 1:03

Hello and welcome back to Positively Leading the Podcast. I'm Jenny and I'm delighted that you're here today. Today's episode is going to be a little bit different. I've had something on my mind due to a couple of conversations that I've been having and I just thought I would share my thoughts, and so this is just a bit of a brain dump based on some conversations that I've been having. I don't want anyone to take this as gospel. I just want you to consider some of the thoughts, and I'd be really interested to know what else that you've been thinking, that you've been thinking. So I've had some conversations quite a lot lately about students with special educational needs, students with disability, students who are neurodiverse, particularly students with autism, and, as you know, my background is as a special education teacher and then as a special education leader, and I've got to say that things have changed rapidly and significantly over the past 15 years, or, in fact, the 30 years of my career.

Jenny Cole: 2:24

When I first started my career, we were just starting to include students with disability in mainstream schools. By and large, they were in country schools because they were the local school and that was the school that students went to. In Western Australia, we have fabulous facilities called education support centers and they were originally designed for students with learning difficulties who, with a bit of intensive instruction, we could catch them up and send them back to mainstream. However, over the years those facilities, as are replicated in most states, started to enroll a number of students with more significant disabilities and in order to get into those special facility you generally needed an IQ assessment and you needed to have failed that pretty substantially in order to get in. And I have to say, pretty in most of my career I came across maybe a handful of students that we would recognize now as having autism. Certainly, as I was leaving special schools 15 years ago, there was a large influx of students with autism, those who were non-verbal. They were often non-toilet trained. They had very high sensory needs. Their behaviour really challenged a standard school setting, even a special school. They were very challenging.

Jenny Cole: 4:09

These are the kind of students that are now in mainstream schools and it is not unusual, particularly in primary schools, to have a very large percentage of we're talking up to eight or 10 kids in any classroom who have some kind of neurodivergence or have ADHD or dyslexia. Those kids have always been there, but we now have those. We have ADHD and dyslexia and autism, and we have students with disabilities included in mainstream classrooms. So the complexity of a mainstream classroom is phenomenal. And you add that to low socioeconomic areas, or you add it to the complexities of students impacted by trauma, to the complexities of students impacted by trauma, you add it to those students who perhaps don't have English as a first language, and all of a sudden not all of a sudden, but more sudden than normal it has become so complex to teach in a mainstream classroom, complex to teach in a mainstream classroom, and so my hat goes off to any mainstream teacher in any school who is trying to do the best that they possibly can for students with such diverse needs. And I need to say that right up front.

Jenny Cole: 5:44

What comes after this? We're going to have a conversation about parents, the parents of students with disabilities and diverse needs. I don't want to in any way to think that. I don't believe that teachers aren't trying the best that they possibly can. You are, and you're doing it with minimal resources, often very little training and just the fact that there are a lot of small humans in that classroom, all who have their own needs, and you have a very prescriptive curriculum these days and often very high expectations about what will be done and won't be done, and I think that's where we should start, and that is community expectations of teachers is higher than it's ever been, and if part of that community is the parents of children with diverse needs, those people have very often not always have also got very, very, very high expectations, and we're going to talk about the reason why that is so. If it feels like some days you're never getting it all done and that you're failing, you are not alone. It's not okay. But I want to talk about the parent perspective.

Jenny Cole: 7:15

So I got into special ed because I'd been at university studying all sorts of other fabulous things like politics and industrial relations and so forth, and I graduated into the recession that we were supposed to have and there were no jobs in corporate and so I was encouraged to go back and do teaching because it was a pretty stable job and you were going to get paid, et cetera, et cetera. And so I went back and enrolled and I could do primary, secondary or special education, and special education was a dip head at the university that I'd already been at for far too many years, and I got into my first lecture and I thought, oh wow, this is exactly where I should be. And why? Because I grew up with a brother who had a learning difficulty. Andy had got meningitis as a child and got some acquired brain injury. He was deaf in one ear and the prognosis wasn't terribly good 53 years ago.

Jenny Cole: 8:30

But Andy went to a very supportive primary school, surrounded by all the neighbourhood kids, and he struggled. But he had great teachers, very supportive parents, and it wasn't until he got into high school that he needed some extra help. So I and he also had epilepsy, so he was that kid that would fall over in the playground. And again, because he was surrounded by neighborhood kids and everyone knew what to do with Andy, and they set him up and found an adult and away we went and everything was pretty good. But I knew that he struggled and I did it. Everything came really, really easy to me and it didn't to Andy. And because I was probably always a teacher, I and my mum did a lot of flashcards and practice and all sorts of things. So this kid that wasn't about that wasn't going to amount to much has actually managed to hold down a job, he has a car, he has a wife and two fabulous children, and so, while he still has some processing issues his logic isn't fabulous he managed to scrape his way through.

Jenny Cole: 9:43

But here I am in my first lecture thinking, oh my goodness, mate, why didn't I know this before? Why didn't I know how to work with? Why didn't I know that the brain worked like this? And so I was. I did it the wrong way around, as I do most of the things in my career. Instead of having a pretty standard primary school primary teaching background where you taught all about regular primary school and then perhaps you learned about special ed later, I did it the other way around. But anyway, I love special ed. From the moment that I did it, I have a very strong value of equity and fairness, and equity doesn't mean everyone gets the same. Equity means everyone gets what they need, and I just loved it, and so it never occurred to me that kids like Andy or anybody else didn't deserve a good quality education, and I know that I come at that slightly differently than a lot of people You'll find in special education.

Jenny Cole: 11:55

People will often come to special education because they've got a family member with a disability, and so they are naturally more empathetic or keen that their family member doesn't, that other kids don't suffer the way their family member does. And in spite of that, I know that some of the biggest mistakes that I ever made in my educational career were working with and dealing with parents, because I brought a lot of my middle class white values with me about what was appropriate, how you should bring children up. But also I now know in retrospect I blamed parents a lot for the behavior of their children, and I'm not saying that parents are completely blameless. I'm talking specifically the parents of children who have disabilities or are autistic. So very early in my career I heard this analogy and I absolutely love it.

Jenny Cole: 13:13

And that is when you are preparing to have a child. It's a little bit like preparing to go on holidays. It's like preparing to go to Italy and you're dreaming about your baby. The same way you might dream about Italy and you might dream about what you're going to wear and how sunny it is and how beautiful the food is going to be and what you're going to do when you get there, the same way you dream that for your child how am I going to dress them and what are we going to do together? And we're going to have a dog and a beautiful and I'm going to read stories and everything is going to be blissful. So we prepare and we get all the right clothes to go to Italy and we book the tickets to go to Italy and we know the date that we're going and when the child is born and the child has an obvious disability, or later on, when we find out that the child has additional need, it's the equivalent of not going to Italy but to going to Holland. Now, there is nothing wrong with Holland, it has windmills and it has tulips and canals, but it's not Italy.

Jenny Cole: 14:27

We'd plan to go somewhere. We'd plan for our life to be a particular way. We'd plan for our holiday to be a particular way, and we are on a different holiday, we're on a different journey, and this is the equivalent of having a child with a disability. You don't love them any less. It's not that you would give them back, maybe in a weak moment, but it's just that all the things that you had planned, all the milestones that you had planned for, are going to be different. First birthday celebrations are going to be different for a child who has a very severe disability. Every single milestone are they going to go to school? Are they going to be loved? Are they going to graduate? Are they going to be loved? Are they going to graduate? Are they going to go to university? Are they ever going to be able to have a house?

Jenny Cole: 15:16

All of these things weigh on the minds of parents of kids who have additional challenges, and so there is grief and recalibration and upset at every single point along the way, and so we are often dealing with people who are grief-stricken. We talk about being in denial, but what they are hanging on to is the thought of the world that was supposed to be. They are hanging on to the ideal of being in Italy and eating gelato when they are in the snow in Holland, and it's not that they're in denial, but just the thing that the life that they had dreamed for themselves and for their children no longer exists, and they are hastily putting together a new itinerary. We often, as teachers, don't quite understand the journey that these parents are going on and how. At every transition point, from daycare to four-year-old kindy, from kindy to pre-primary, from pre-primary to the first year of school and then into middle and upper primary and then into high school, and so forth At every transition point. They have to recalibrate and create a new itinerary, and everything is new. These kids don't come with an instruction manual. They don't come with an itinerary. Parents are having to make this up as they go along. And here's the thing.

Jenny Cole: 16:56

Unlike my brother, andy, who grew up with a brother and a sister and a very big close neighbourhood of kids who were all the same age and same stage and for whom it became quite obvious that he was different because he just wasn't keeping up with those kids who were younger than him, or with his brothers and sisters, my mum had something to compare his development to. Back in the day, we would be brought up in very large families and we would know what our kids were supposed to be doing by what age. We don't have those large communities anymore. So often parents don't realise their child is different or behind until they reach school, which is very frustrating for schools because they say what is wrong? Is there anything wrong with your child? Do they have any needs that we need to meet? Have they been going to OT or physio? And often not always.

Jenny Cole: 18:01

Some parents are very on the ball and have their kids diagnosed very early and access lots of early intervention, but again, they are parents generally who have the means and the capacity and the English to do so. If you are from a non-English speaking background, if you've got poverty or trauma or any of those complicating factors, chances are kids will get to school without anyone realising that they are as far behind as they are. And then we know we've got all of that stuff about getting diagnoses and trying to find a pediatrician and trying to find get into a GP again. If you've got the means and the education and the literacy, all of that is quite easy. And yet as educators we often blame parents a lot for not doing more. And I don't know if you've ever had much to do with public health, but taking a day off work to get to a pediatrician's appointment where you don't have a day off or can't afford to do that is almost impossible for some parents.

Jenny Cole: 19:13

Missing an appointment because you literally don't have the money to put the petrol in the car is a real-life scenario for some of our parents. They are dealing with the stress of poverty often, where just keeping a roof over your head is possibly more important than missing the pediatrician appointment that you've been waiting 18 months for. Add to that the complexity of NDIS. So prior to NDIS, generally the mother of a child with a disability would have to leave work to care for the child, to leave work to care for the child. So at best that would take a dual income family down to a single income family and that would automatically make them less financially stable, just because at least one of the parents couldn't work, and then they were having to pay for a lot of therapy and so forth themselves. These days we've got the National Disability Insurance Scheme and once the child has a diagnosis, they are often eligible for a package of funding. The idea behind this was to allow the caregivers to return to work and still have the funding and time to have additional therapy and so forth.

Jenny Cole: 20:47

However, managing your child's NDIS funding is like doing your taxes every single week. It's complex, it's hard. Therapists move, providers change. Everything costs a lot of money. Everything seems to be triple handled. Every year or 18 months you need to reprove your child's disability. It is a full-time job trying to manage your NDIS. So what parents do in order that they can go back to work, or at least that they can have some autonomy in their lives, is that they frequently agree that the therapy will take place during school hours.

Jenny Cole: 21:28

And then all of a sudden, us as educators, leaders, teachers, education assistants in schools we've got all of these therapists working in schools, taking our very precious teaching and learning time. And then we complain that the therapists change and that we never know what's happening and we don't read their reports. And they complain about us that we're doing this thing and that child isn't up to it. And why are we doing that? And so then we've got a whole bunch of professionals trying to not step on each other's toes is the polite way of thinking about it. Then, because we are good educators, we invite parents into case conferences and we ask them questions like what do you think we should be focusing on in schools? And the parents are like, oh, I just want them to read and write. And you're sitting there thinking, oh, don't be ridiculous, this child will never read and write. They're very profoundly disabled. You are a parent who has made these plans to get to Italy that's going to involve reading and writing in Italian, and somebody's telling you that you can't do that anymore and that's going to feel really frightening.

Jenny Cole: 22:39

When school is for reading and writing and arithmetic, or the parent might have completely different expectations and want you just to keep them happy or just to do their therapy programs. And you, as an educator, who are responsible for implementing national curriculum, are sitting there thinking I just can't keep them happy, I can't do a sensory diet all day, I just can't do physio programs. We've got teaching to do here and there are a thousand variations of that. So you have very stressed parents in a very difficult situation trying to communicate with a whole bunch of professionals. When I reckon, the bottom line for all parents of a child, parents of all children, it doesn't matter whether they've got a disability or a special need or anything.

Jenny Cole: 23:33

You want your child to be loved. You want the people that you hand them over to to love them and care for them and see them the way that you do, as little individual human beings. You want your child to be as independent as possible. You want them to have the skills of independent, and for some that will be reading and writing, for others it will just be about wiping their own bottom and for others it'll be about managing money. You want them to be loved, you want them to be independent, you want them to have friends and, of course, as we know, with our little puppets, with autism, this is really challenging. And so, as a parent, you're sitting there thinking I just want them to belong, I want them to fit in, but you know that they don't, and you want the school and the system and the world to be more neuro-friendly and neuro-accepting than they.

Jenny Cole: 24:33

Are Very frustrating, and we just want, as a family, to be able to go out and do the things that we normally do. And if you've got a child with extremely challenging behavior, for whatever reason, all of a sudden your life has been turned upside down and you can't go to the footy anymore because it's too loud, or you can't go to the movies because it's too dark, or you can't take your child on a family picnic because they might run away. All of a sudden, you know your life at home is upside down, and so you're desperately seeking security for your child at school, where you are told you have to take them and where that they will be safe. So parents want their child to belong, they want them to be independent, they want them to have some skills that they're going to be able to use when they're adults. This is a good old-fashioned pub test. We want to be able to stand at a social gathering, at a pub, at a concert, when we're 22. We want to be able to have a conversation with someone, to not look weird, to not get punched by somebody because we're in their personal space. We want them to be able to pay for their meal or their portion, to be able to hold a conversation, a conversation. We want this four-year-old with extreme behavior to be able to function as a 21-year-old in the world, ideally with a job, being able to drive a car.

Jenny Cole: 26:19

And sometimes the dots between the four-year-old and the 22-year-old are not only impossible to see. We can't see past our noses. We can't. Parents don't know and teachers are stressed and overwhelmed and can't do what is needed. So what is needed?

Jenny Cole: 26:42

Empathy, empathy. That teacher cannot be responsible. As a teacher, you're not responsible for what happens at home and as a parent, you cannot be responsible for what happens at school. We have to take ownership of the parts for which we are responsible, and that starts with empathy. Empathy for the teacher who is trying to provide educational opportunities for 24, 25, 35 young people. Empathy for the parent who had planned a very different life than the one that they have ended up with. Does it mean that they don't love their kids. No, they love them dearly. They might not love them the way you do, they might not parent the way you do, but empathy for somebody is being able to walk in their shoes and understand what it is that they are feeling.

Jenny Cole: 27:39

What I see too often in schools is teachers and leaders trying to tell parents what to do and explain what it is that is happening at the school that the parents should understand, and there's too much explaining Show, don't tell. Take responsibility for your part of the challenge and offer what it is that teachers need. I love your child and I am going to support them as much as humanly possible. Sometimes I find their behaviour really challenging. Sometimes I don't know how to plan for them, but your child is a little human being and, trust me, when they're in my classroom they are going to be loved and they are going to be cared for. It might not be the way that you do it, but we're going to do the best that we can and when parents feel like you love them as much as they do, they are going to relax a little bit. You'll get a lot less of the anxiety and you're going to get a lot more cooperation.

Jenny Cole: 28:50

And this comes back to a conversation that I had last week with the mother of two boys with autism. One has very challenging behavior, and she said I was an anxious kid and I know what I needed. I just needed reassurance. I needed people to understand the strategies for how to deal with me best and I wanted people to try. And that's all I'm asking for the school for my boy. I want you to do as much of what the research and what the practitioners say works. I want you to involve me when humanly possible and I want you to love my child the way that I love them.

Jenny Cole: 29:38

But that doesn't mean you have to be their parent.

Jenny Cole: 29:40

That doesn't mean you don't have to have boundaries, but the way that this mother explained it was phenomenal, which brings me to my final point. Let's inquire deeply into what these parents already know about their kids, what already works, what do these kids already love? In the times when these kids can communicate, what is it that they're saying? How did the parents get to do that? So, yes, we're educators, yes, we've got degrees, yes, we've been to all the professional learning, but the person who has spent the most time with that child is their parent, and if we come from a place of empathy and curiosity and we aim to build relationships rather than build walls, hopefully it's going to be better for all of us. I hope you found that episode insightful, maybe even a little bit useful, but just an encouragement for both teachers, educators and parents Approach each other with empathy and curiosity, ask questions, seek to understand and know that none of us planned this journey, but that doesn't mean we can't be on it together and we can't be successful.

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