#067 Common Inclusive Education Fears of Special needs Parents with Marilyn Dolmage.

#067 Common Inclusive Education Fears of Special needs Parents with Marilyn Dolmage.

I’ll be publishing bonus episodes this month with parents telling stories about their children’s successful inclusion but I won’t be emailing about them.

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Special needs parents have a lot of decisions to make when it comes to education. We worry about what is going to be best and we worry about the fact that we don’t know what we don’t know.

Inclusive education expert, Marilyn Dolmage, answers the following common questions that parents have about inclusive school placements.

Will my child be safe?

Will my child have access to the kinds of specialists, therapists, behavior supports, occupational and physioand speech language supports that they need?

Will my child be supported well in a regular classroom? Will they have one-to-one support or at least a tiny adult student ratio?

Is my child going to make friends?

Who’s going to help me? How big of a fight is this going to be?

If you want to ask insightful, quality questions that really get to the heart of inclusion, download this free guide.

Is This School Inclusive? 14 Questions Every Parent Should Ask.

inclusive education

This guide provides best practice statements, high quality and red alert responses and space to take notes on your priorities and the answers you receive from the school. All so that you can focus your thoughts, and your advocacy efforts, on what really matters.

Transcript

Genia:
Hey! Genia here. Inclusive education expert, Marilyn Dolmage and I recorded this podcast episode in the first few days of March before COVID-19 hit our communities. We were planning on opening up our inclusive education foundations course, The What, Why & How of Inclusive Education, at the end of March. We canceled that because we were all dealing with kids at home, school closures. This episode is about common fears that parents have around inclusive education and then publishing it now because our fears haven’t gone away. If anything, we just have more of them. We are opening up our foundations course on July 22nd. You can’t register yet, but if you’re interested in signing up, you can add your name to the waitlist at goodthingsinlife.org/inclusion. Let’s get started.

Genia:
Welcome to Good Things in Life, the podcast that helps kids with intellectual disabilities build and lead fulfilling lives. I’m recording this podcast episode on a Sunday. I’m not sure if you can hear it, but in the background of my house, somebody is running a bath. The laundry is going. The kids are playing video games just across the way from where I’m sitting here with my dear friend, Marilyn Dolmage and we’re recording this podcast episode, it’s a little off the cuff, a little last minute because we’re in a period of time where parents are starting to have meetings around school planning for next year. And so that has meant that I’ve had an opportunity to speak to many parents over the last little while. And there’s some universal or near universal emotions that people are expressing. And you know, some of those are good, but there’s an awful lot of, there’s an awful lot of fear, an awful lot of worry.

Genia:
And, you know, pretty intensely, people are feeling these, parents are feeling having these, you know, pretty big strong emotions. And so I asked Marilyn if she would be willing to have a chat with me about some of the major concerns, worries, fears that parents have when they’re making school placement decisions, and Marilyn has graciously agreed to spend some time in the Sunday afternoon talking with us. So, thank you very much, Marilyn. I’m as always grateful for your time and your contribution.

Marilyn:
Glad to be here.

Genia:
Now, I feel like you don’t need an introduction because you’ve been on the podcast before, but maybe you could really just briefly outline who you are and why I’m coming to you for this conversation about school inclusion and placement decisions.

Marilyn:
Well, I always put my role as parent first, although my parenting began a long time ago. I learned most from my three children who eventually attended school together. So that my son, Matthew, the oldest could be a member of regular class in the neighborhood school. And I learned a lot from him and from his experience. But before that, I was a social worker for many years in government institutions for people with developmental disabilities, trying to close those institutions and get people out. I also have supported the class action of people harmed in institutions. And as Matthew’s life went on, we advocated for direct funding and for him to have his own life and own choices. And he lived a good life until he died at the age of 29, very suddenly. So I’m looking back as the grieving mother, thinking about, often about mistakes that we made along the way, orwhen you said about the emotion of fear, I certainly relate to that.

Marilyn:
I can remember those feelings and appreciate how difficult it is for parents, but I’m also very sad to think that fear is what motivates us. And it’s very hard to have hope to be positively motivated to see some good things happening around us. I think in fact, the other thing about my background is I’m a social worker and I actually feel that sometimes professionals don’t help very much by making people afraid rather than making people hopeful.

Genia:
It’s interesting. I just recently, was preparing for a different podcast episode with Dr. Peter Rosenbaum from CanChild and he called it the catalog of doom. I just, I think I’m going to use that term all the time.

Marilyn:
Yes. Yeah. Like you’re, you’re shopping from a catalog and all, all there is doomed.

Genia:
Yeah. And then, so you talked about your career as a social worker and as a parent, but, you know, since, you know, in more recent decades, you have also been an expert and a consultant in inclusive education, mostly in Ontario, Canada, but also nationally and internationally as well.

Marilyn:
Yeah, since 1995, I was involved in a number of projects around the whole province of Ontario and a research project around high school inclusion for students with significant challenges. So for me, it’s always about all students. And, I’ve learned a lot from working with schools, working with parents, working with school administrators, sort of at every level. And, I, for this, I introduce myself as a parent first, but I’ve been a consultant with school boards and I’m with community agencies that are advocating on behalf of families.

Genia:
Yeah. Great. Okay. Well, let’s just dive in to the question. So I have six considerations or six concerns that I have listed out based on my recent conversations and ongoing conversations over the years in my personal experiences, of course, as a parent. So the very first, and I think top concern we all have as a parent is will my child be safe? So I’ve spoken to a number of parents recently whose kids, you know, don’t always do what they’re told. Don’t always listen. You know, sometimes they run away or elope. And they are concerned that, you know, in a general education community classroom, that their child might just leave the class and get lost or get hurt. And they feel like maybe, in a segregated or self contained classroom, there may be more safety measures available to keep their kids safe.

Marilyn:
Well, I think, what we have to remember as parents is that schools have that responsibility to keep kids safe. That’s their legal responsibility. So, if that’s our primary concern or if we let them opt out of that responsibility, by imagining all the worst things that could happen and how it will never, we’ll never get help, the school will utilize that and make it harder for us. The thing that I think of just sort of, and this time of year is exactly the time when families are meeting with schools. And schools can actually feed into that fear. So we have to be really careful about that, I’ll say that first. And what I think is absolutely necessary is to, find your own support group to deal with that fear, you know, people who understand what you’re feeling, but let it go for a little while because until the school is convinced that your child is coming, they will do nothing. So, unfortunately the way the rhythm of the year works is you may have to wait until late in the summer to have a really serious discussion about safety. It might even happen early in September because until the student belongs to the school, the school has no need to worry about safety.

Marilyn:
And it’ll take the classroom teacher pushing upwards in the system and the principal pushing upwards to the board to make sure that everything’s in place so that, you have to really start as a team process, but make sure that you’re not taking on all the worry that they actually take their responsibility. So that’s a kind of a, I’d start there. But, what we, when any child goes to school, there’s no guarantees, right? There’s always risk in new experiences. What we have to really be clear about, and the reason why I talked about my experience with institutions and talking to people who lived in institutions, is that segregated classes are not safe.

Genia:
Right. That’s what I was thinking you were going to say when yeah.

Marilyn:
Absolutely. I guess I’m trying to say, let’s think about, and imagine the scenario of a student in regular class. And don’t only think about the fear.

Genia:
Yeah. Of course, yeah.

Marilyn:
As I said, a minute ago, hope is really important. And there are many kids that might be a flight risk in JK and SK. And you know, they’re starting at the age of three. So, schools have to take that responsibility seriously, no matter who the student is. So if you start with a really big vision of your child is going to be safer as a member of his own community, then that’s the long range view as well, that in the long run, students are not safe in segregated environments. Children, people are not safe. And so your child has every right to be a member of the safe, real community. And people are safe because they make connections with classmates in school and kids on the playground and parents meet other parents when they’re coming and going to and from school. So those are all the parts of belonging to neighborhood that increased safety.

Marilyn:
When a person is in a person with a disability is in a group of only people with disabilities, they’re much less safe. There’s much less opportunity for someone to call for help or someone to notice what’s going on. And there may be additional staffing, that may be the school’s answer, it often is. But that’s not the first thing to consider. I think the first thing is to think about how can all kids be saved. So, you know, a school yard may not have a fence, but a fence would be better for all the kids. I just use that as an example. Something like a Dutch door on a room where there’s half the doors open. There’s technology that can keep kids safe. But the best way to keep people safe is by having connections with people, diverse members of our communities, not putting all the people with disabilities who are vulnerable in one place, because in actual fact that’s the least safe place to be.

Genia:
One of the things that, um, that I’ve seen over and over again in general education classrooms is that the kids in the class often are excellent problem solvers and sort of mediators or interpreters of what they see going on. And so, you know, they’re a real rich resource for figuring out how to figure things out. But in a segregated class, beyond some of the other dangers, even if the kids had observations that might be helpful about how issues might be solved or safety might be achieved, very often because there’s fewer children and a greater percentage of children with communication challenges, they’re less able to be contributors to that conversation.

Marilyn:
And I think traditionally because of our history as a society, nobody’s asking them.

Genia:
That’s true.

Marilyn:
You know? But I think, the other, the other thing about the class and the class as a community is that you’ve gotta be really, you really don’t want those other students to be behavior managers or [inaudible] runaway, go get them, that sort of thing. That’s not what happens naturally among kids, really. The best way to keep kids safe is to have them really engaged in learning. And, then they don’t want to leave. You know, I think if a student is leaving, it’s a sign, it’s an alarm really that there’s not enough happening in the class to engage them. They’re being left out because really kids want to be part of the group. That’s just our natural state of being.

Marilyn:
And, another thing about a regular class in neighborhood school is that brothers and sisters are more likely to be there. People who live in your neighborhood, who we hope already know your son or daughter, whereas segregated classes are often at some distance away from home, and there’s less likelihood that anyone will already know them. And so that’s what safe, that’s what keeps people safe, having more people who can walk and talk and who can problem solve, who can find solutions, who can find, those other students are the resources, who can find ways to engage the student. So there’s lots of reasons to be there. Health and medical issues too. I mean, those are all things that are the school’s responsibility. If parents though at this time of year approach the school with that as their first question, I would say that in my experience, the school is going to test you. They’re going to maybe ask you to, well, what would we do about that rather than find their own solutions. So it’s best to approach the school about your child as a contributor and as someone who likes to be active in learning things and active physically or active in terms of interest, what interests them. And that’s the information to give the school, not that they’re a flight risk. We naturally, most three year olds are a flight risk in the school.

Marilyn:
So, that’s something that a school has a responsibility to deal with, but it shouldn’t be, it, you know, it’s obviously, it’s parent’s first concern. Of course, it’s really everybody’s first concern. But if that’s the first thing you talk about at the school, you’re likely to get more frightened. Be more motivated by fear and have less hope about all the things kids go to school for, learning and socializing.

Genia:
Yeah. Exactly. And later on this year, I’ll be sharing a series of podcast episodes around health and wellness and, you know, medical complexity and tech dependency in school and that kind of stuff as well. So there’ll be, we’ll cover that in more depth. Okay. So what about concerns about access to the kinds of specialists, therapists, you know, that you’re told your child will benefit from? So very often, parents are hearing that the way that their child can get the behavior supports the occupational and physio and speech language supports, that those are all provided in an intensive intervention in a special class. And that the child really needs those interventions in order to be able to move successfully through life.

Marilyn:
Well, also thinking about the timing in a child’s life, I think it’s quite likely that up to the age of school entry, the family has spent a lot of time with specialists and therapists and those people who are making diagnoses. And what they’re often taught, telling us about is the problems. What’s what needs the student has, not their strengths. Families have gone describing their son and daughter to a specialist, and they’ve come out of that meeting with a negative picture about what doesn’t work, what’s the problem. And of course the specialists are saying you need more of my specialty. What we have to really root ourselves in entering school is that there’s a lot more to education than those therapy pieces. And I kind of relates to the previous question, but I know when I first approached the school many, many years ago, more than 40 years ago for my son, Matthew, I was conditioned to introduce him to people as I would to [inaudible] of this, the night before surgery. And I started to recognize that pattern in myself. So when the principal who actually was a friend, who actually knew Matthew, asked me this question, and I didn’t, he said, tell me about Matthew. Well, he already knew him, you know. It twigged me, triggered me to do my head-to-toe or toe-to-head litany of what was wrong with Matthew. What issue, what medical issues he had, for example, when that wasn’t what a kindergarten teacher would need to know. [inaudible]

Marilyn:
So, I think we have to, we have to sort of think also where do our kids learn best. I’ve looked back on Matthew’s life and thought that we wasted a whole lot of his time on some of the developmental stages kinds of things, working on skill building in a therapeutic sense because everything he gained, he gained, I think mostly by being with other kids and having role models. Because he actually resisted that the adult therapists forcing him to do things as most kids do. And it’s actually, it’s most natural for kids to do. Most kids would not want an adult moving their legs and moving their arms and making them say things in a certain way. But that is the traditional approach. There are many more opportunities in a regular classroom to gain all of those skills, even better by being part of the group.

Marilyn:
Now that isn’t to say that if a student needs stretching or exercises, that can’t still happen in regular classrooms. It might happen in a flexible way when all kids move around the class or it might happen in a phys ed time or recess time that you’re looking for some help, that figures out how to create those opportunities for movement or practicing speech as just a part of regular activity. And what I’ve seen in all of my work, as well as, as a parent, is that that’s where kids make the most gains. And that’s also where you mentioned other students as finding solutions around that, other students figure that out.

Genia:
And in, in your course, The, What, Why and How of Inclusive Education, you also talk about the opportunities matrix, where somebody might take a therapy or intervention goal that may be 100% valid and necessary in a child’s life. And they, and look at the day, the school day, and figure out where are the places where this goal can be achieved within the context of an inclusive school. One of the things that my son’s school did, which I really appreciated was that, he needs support in a number of different ways that could take him and could easily take him out of the classroom. And so they actually broke it down into, um, sort of almost minute by minute time in the, throughout his time at school. And they looked at how much time he was out of the classroom for those things. And then they did that kind of opportunities matrix. And they also looked for like, where is the time, where are the minutes that are essentially kind of wasted time at school, you know? And then they kind of figured it out to make sure that he did get these, the care and support that he needed, plus the interventions and the therapies that really are required, and made that work within the context of his inclusive classrooms. So it can happen for sure.

Genia:
Hey, just a quick reminder that actually registration for The What, Why & How of Inclusive Education is opening up on July 22nd. You can register for the way page, which comes with a discount code by going to goodthingsinlife.org/inclusion. But if you’re really thinking about inclusive education right now, and you’re wondering how worried do I need to be about how inclusive my child’s school is? You can download my free questionnaire, which will help you to determine quickly and to have effective conversations with the school around how inclusive they are. You can go to goodthingsinlife.org/14questions. That’s numeral 1, 4, questions.

Marilyn:
Well, it raises, two ways of, if there is a particular therapeutic need, then looking at the schedule of the day and how that fits into that matrix allows you to figure out how to be really flexible about the schedule, the place and times that things are happening, or it might lead you actually to question, is it as essential as you thought it was because there might be, there might be so many other opportunities for stretching or for movement or for communication practice, for example, that are proving to be much more effective. And again, if you approach the school thinking that this, kind of being led, I think, into thinking that only a therapist can do these things in a separate space, or even in fact thinking that this has to be part of every day in a really regular way, like being flexible about it.

Marilyn:
If approach it inflexibly, then you’re likely to get that because ahead of time, you can’t work these things ou., You kind of have to start and say, Look, oh, look, things are better. When I looked back on some of Matthew’s school papers recently, I found that there was a lot of drill say about body parts and things like that, but he wasn’t interested. You know, years where he wasn’t making progress on some of those things or not communicating to therapists. And it wasn’t until grade eight when he was exposed to the whole curriculum. And he had a chance to be part of all of the activities in the classroom that he started really making huge leaps in gains. And Genia, you’ve talked about Will, that in terms of being read to and having people talk to him that he responds much better when it’s something that the rest of the class is doing. It’s curriculum, it’s not a separate kind of agenda and curriculum. Again, when students don’t do well in say communication, speech and language therapy, it’s assumed that they can’t, rather than we don’t question, what is it about the approach or the environment that makes this difficult.

Marilyn:
And unfortunately, parents are led to think that we should wonder if regular class can meet those needs. When in fact, if those needs aren’t met in a segregated class, we always blame the student for failing.

Genia:
Yeah, yeah, yeah. It’s true. Norm Kunc and Emma Van Der Klift did a podcast episode, a previous podcast interview, and Norm talks about, the name of the episode is You can’t learn to swim in the parking lot of the pool if people are looking for it. And Norm talks about a conversation he had when he moved from segregated to inclusive education settings with his speech language pathologist, who was very worried about him, quitting speech language pathology. And one of the questions that he asked her was what’s the point in learning how to talk if I don’t have anybody to talk to.

Marilyn:
Right.

Genia:
So anyway, people can go back and listen to that epsiode interview.

Marilyn:
I would say about that too, that what I learned from Matthew and I’ve been able to help other people with along the way, when we asked he and his friends about what was important to his future, we had a group with including therapists and teachers and friends. And the therapists and teachers talked about, well, he would need to walk better and talk better. His friends said he’ll lead people to talk to, and he’ll need places to go with friends. And in fact, those were the most motivating things for him. And that’s what opened his world up incredibly well. And it might never have happened if the focus had been on therapy.

Genia:
Yeah. Okay. So, next question, will my child be supported well in a regular classroom? Will they have one-to-one support or at least a tiny adult student ratio?

Marilyn:
Yeah. Well, we don’t know the answer to those questions at this time of the year, right? So this is a time to forge ahead and say what I, I’ve learned all you can about inclusion, which is a reason to listen to the modules, watch the modules, because I think, unless we understand, parents are teachers usually, and we haven’t been in a classroom for a long time. So unless we understand all that inclusion means, I think most people assume it means one-to-one support and we miss all the other pieces that are important. So having an educational assistant can actually be very segregating. So, it can mean that the student and the adult are out of the class back and forth in and out of class, more than the student would want to be, more than the student needs to be.

Marilyn:
And as I’ve been saying, those other students are sometimes the best teachers. The whole group of students learning together and the opportunity to be a teacher to another student. So the student is using a communication device, using sign language, then other kids are learning about communication devices and non-verbal communication and sign language. Those are really assets for the whole group. So instead of being the person who needs help all the time, the student can actually be a teacher and a leader. And, that’s hard, I think, for parents to imagine until we start working in that direction.

Genia:
Yeah. Yeah. I think it’s extremely hard to imagine. And it feed, the idea of having a one to one support for our kids is very reassuring to us, especially if our kids, you know, require… It’s very reassuring and it’s hard to imagine an alternative to one-to-one support if our kids need a lot of support. And I think in the spirit of time around this conversation, we can’t cover all of the ways in which we can pull back from one-to-one support, but we can, I think, confidently reassure parents that actually a one-to-one support is not necessary in order to ensure that a child has a positive, safe, and enriching school experience. And I just want to put as an aside, sort of, I mentioned that later in the year, I’m going to be talking about medical safety in school. So I will talk about, you know, supports in the school, if your child requires a health, like nursing support in school, right. That’s not what we’re talking about right here. We’re talking about educational, and you know, social and behavioral supports.

Marilyn:
Yes. And if we, if we leave that topic for later, as I said, it’s hard to wait when you worried about safety. And there are some students who may need more staffing, more [inaudible]. But, I think about, do you ever leave our child in a room without an adult at home? Do we ever, were they ever alone? And I think a lot of schools, once they know that the student is coming and that they can’t convince the parent otherwise, or raise those fears because I mean, it is a bit of a, it is a bit of a power game, the school’s in charge and they don’t have your child. And you’re saying, please take my child and make it work. Once they know that you are determined for your child to be there, they may put an adult in place. There may be extra staffing. That is often how they deal with what, once they see something as a health and safety risk.

Marilyn:
The issue though is that that person doesn’t have to be just a body guard or just a personal assistant. There’s lots of ways they can contribute to the whole class. But that’s for later discussion. If you approach thinking that they’re, you know, tell me today in the spring that there will be an educational assistant in September and the answer will be no. They will tell you no, that they, that they can’t see for sure. But, so I think in the meantime, while you’re worried sometimes, find out all you can about how this works without the staffing coming searched. And in Matthew’s life, for example, in high school, where he was most included, he had I think a third event of a staff person available to him for a third of the day. And that was usually too much. In fact, he required help in a lot of areas but it’s really looking at how students can learn together, what you want more than anything is for the classroom teacher to be connected. And to really, the student feels he belongs when the teacher is committed to his success and safety to focus more on the learning,

Genia:
Right. Yeah. Yeah. For sure. And I, you said, you know, yes, some kids are going to require adults support, and of course that’s true. And some kids might require one-on-one support, but what I find it sort of an interesting thought experiment is that if you are listening to this and you are thinking, well, my child is definitely one of the kids that requires one-to-one support 100% of the time. If you were in a room with nine other parents look around at each other, because if you all believe the same thing, you are very likely, some of you are wrong.

Marilyn:
Yeah. And Genia, you spoke to this in a, or raised this issue in a post this week about how, when parents get together, we sometimes don’t help each other. You know, we talk about the problems rather than the strengths of our kids. And in any group of those parents, you’d be surprised that some of the parents who are saying their child, isn’t safe, that there isn’t anywhere near the safety issue that another child would face. Like where we get really stuck in our own narrow views on that. And as I said, there’s other, there’s many other students that are safety risks in the school. That’s what schools have to contend with. So an adult isn’t, an additional adult isn’t always going to keep the students safe. Like for example, I said that being engaged in the activities in the classroom, if there happens to be an educational assistant who kind of is uncomfortable there and goes out a lot, then the student will, won’t be getting as engaged as they would be, which would have kept them safer and more involved in learning more.

Marilyn:
The focus should always be on less support and moving support away. And that’s the longterm vision that we need to have to that if our view is that a child in elementary school needs an adult with them all the time, then we got to be careful because that looks like an adult life where you’re with paid people all the time and not friends and having other relationships. And it’s pretty amazing the way kids can help one another and change society and change the school and the community into a much more connected place where people are helping each other.

Genia:
Okay. So I think Marilyn, one of the core key knife to the heart of every parent of any kid with a disability is, you know, is my child’s going to make friends? You know, is my child going to be bullied in inclusive class? If my child goes into an inclusive class instead of a segregated class with other kids with disabilities, will they ever make friends?

Marilyn:
Yeah. Well, that’s what we expect for all kids. That’s what school should be. So, can we predict that? No, but I think students are more likely to be bullied when they’re set aside from their own community. When they’re sort of over one of them over there, there’s somebody you don’t know. There’s someone who you don’t know, their brothers and sisters. You know, there’s no, where there are no connections is the least friendly place to be. So there are opportunities in a regular classroom in neighborhood school that don’t exist in segregated classes that are going to keep people safer, keep people learning more and procreate opportunities for relationships. If we’re only thinking though about adult supervision, there won’t, you know, we’re getting in the way of the friendships that are going to happen between kids. So, adults that help promote friendship, that’s really what all schools are supposed to do. And that’s what is effective education. So we should expect that.

Genia:
Yeah. I have a long list of stories in my life around friends of mine coming to me to tell me about how they protected my little sister, you know, when they saw something happen when I wasn’t around. And, you know, what’s happened in, you know, what’s happened in my son’s life and how the other children have both, you know, both how he’s made friends, but also how people who just even know him peripherally have been really protectors.

Marilyn:
And we can’t predict that that’s going to be lifetime, lifelong friendships. That doesn’t happen for many of us, really. The kids we’re meeting in elementary school are going to stay in our lives, that’s very rare. But just opportunities for friendship enrich our lives so much opportunities to be part of a group project in a classroom. And so I think, again, information really helps parents to imagine how that can happen. And also the information that we’re sharing in the, includes, the academy modules, it’s about how that is known to be better education, the way kids learn together, the way teachers help kids learn from each other and in groups and in projects that’s what’s happening. And I was at a disadvantage with that because when I was in school, that wasn’t a big thing. You know, it was kind of, we worked separately and now that’s very well researched and shown to be effective education. So the best way to make friends is in your classroom. Classroom to recess and, you know, having an opportunity to be just one of the kids and could see that much better than adults can.

Genia:
Yeah, Exactly. And you know, the, if you want your kids to be friends with kids in the neighborhood, then they need to spend time with the kids in the neighborhood. And that means inclusive education. And just a clarification, so the academy modules that Marilyn is referring to are the modules within The What, Why & How of Inclusive Education course, which inclusion Academy members have access to. Okay. So next concern, this is obviously a huge one is my child too disabled for the curriculum. You know, we, as a family, you know, we’re still working on helping our child with some really basic kinds of things. And a doctor or a therapist has told me that my child is, has a severe disability, blah, blah, blah, that they’re never going to, you know, blah, blah, blah, blah. And I think that’s a near universal experience that parents have been told what their child’s diagnosis means that they won’t do. So if they’ve, so are there any kids that are just too impaired to be able to benefit from the curriculum?

Marilyn:
No, I’m not at all. When I talk about inclusion and everything I explained about inclusion is about all students. It won’t look the same for everyone. It’s very, you know, customized like that rhythm of the day idea that we talked about a minute ago, that you can be flexible about what happens when. But, it is about everybody. And the problem with those predictions, sometimes they’ve been made based on a comparison that isn’t fair. A student, a child who has been ill or hasn’t had a communication method. We really can’t predict early in their lives that they never will. Or that they’re compared against kids who haven’t been in hospital a lot, or who’s had a richer, easier life. So, the comparisons, first of all, against an idea of normal are often misleading. But I, what I, what I’ve been most motivated by, and I think is really helpful in our work is that, we can’t predict the future and we’ve got to be careful that we don’t make mistakes about it.

Marilyn:
And that the worst mistake to make is that someone won’t ever do something. Earlier in their life, you make that prediction. And then if you let that guide all your decisions, then you will never give them an opportunity. You’ll never know whether they might have learned if they’d been in regular class. So, especially where students have very rare differences, there is no model for this, right? So the expression for man Donalyn from back in 1984 was since we can’t predict the future, make the least dangerous assumptions about it. So it’s less dangerous to try literacy learning and find out that a student didn’t learn then to never try and be wrong.

Genia:
That’s right.

Marilyn:
So that’s the best way to be wrong is having tried rather than if you don’t ever try, you’ll never, you know, eliminating opportunities. And everyone gains the most when they feel they belong. So that’s what you’re really looking for, first of all, that you, as a parent, you go to the school, ideally your own neighborhood school, where the student would go if they didn’t have a disability. And here we are, this is our school, our community, these children are all part of our community and we’re part of it too. So, and then see what happens.

Genia:
Yup. Excellent. Okay. Final concern. Who’s going to help me? And how am I going to, who’s going to help me, who will be my allies and how big of a fight is this going to be?

Marilyn:
Yeah, well, that’s a hard one because big changes like this, aren’t always easy. They’re often difficult. You have to really be sure that this is, we, you can be assured, let’s say, that this is going to be worth it. That’s what I’ve seen in schools all over Ontario. And it means you have to find new allies. So again, when I think about the sort of rhythm of people of children’s lives when they approach school, age, families have been spending quite a bit of time with therapists and people who’ve made those diagnoses. So, and they can be very good friends and allies. But I think we need new allies. We need new allies in the school. We need to know our neighbors. One of the best things about a normal rhythm of the day for a student is that when parents drop their kids off, the parents have a chance to meet other parents in school. And I know there’s a family I’ve been assisting this year, and they were asked to bring their son to school late every day.

Marilyn:
Which of course, isn’t a good thing for any kid. But once they kind of put the foot down and said, no, he doesn’t need a shortened school day. His energy level is fine. And it’s really important that he start the day at the same time as everyone else. It was a huge change for the parents because then they saw their child entering school and they saw the other kids how interested the other were in him, what the connections were among them. And then they had a chance to meet the other parents as well. And I think that’s another thing about neighborhood school is that it’s worthwhile to get to know the teachers and the administration. And if you have other children in school, you’re gonna have more chance of doing that. So, good idea before school starts is to attend some school event, some barbecue or a play that’s at the school, take your kids along.

Marilyn:
So the more you’re known and every one of your children is known in the community, the more chance there are for connections to be made. It’s a hard thing I think, both for parents, if they’ve been dealing with some hard times for preschool child or up to this point for the students, some difficult medical issues or the challenge of hearing a diagnosis for the first time, then you kind of stick with the people who were with you at that time. But that sort of focusing on some negative experiences, it’s really important to know, and to be sure because you’re talking to other parents that your neighbors and the parents of classmates are going to be friendly and nice people. And it isn’t just therapists and specialists that can be supportive. I think that that’s the most wonderful surprise that people may have once they are there all along the way on this journey. But they’re not going to understand that sort of balance of fear, difficulty of having hope that other parents of kids with disabilities who’ve walked that walk before have had. So I think that’s where opportunities to network with the inclusion Academy, for example, and share some of those feelings are really important.

Genia:
Yeah, for sure. So, yeah. So the Inclusion Academy is the Good Things in Life membership, but you don’t have to be a member in order to join the Good Things in Life free Facebook group. And you can find that by going to goodthingsinlife.org/group. I also have created a free guide, 14 questions to ask a potential school when registering your special needs child, which can be helpful for parents during this period of time, as you move into placement decisions and the initial IEP season, to get a sense of kind of where things stand with your school and your school program, or your potential school program for your child. And I realized, I said, we’re opening up The What, Why & How of Inclusive Education course later this month, but by the time this airs, it will, registration will be open actually. So you can find out more about The What, Why & How of Inclusive Education by going to goodthingsinlife.org/inclusion.

Marilyn:
I think that’s really important because our impression of what school is going to be like is, needs to be really thorough. Like we need to understand all the parts, all that inclusion should be, why it’s important, and some of the strategies that make it successful. School systems, nobody asks questions about why should a student with disability go to a segregated class? That’s sort of just the natural flow of things historically. I think parents have learned by this time in their child’s life, that they have to be an advocate and they have to gain some skills around advocacy and get some strength from other people. We’ve all become advocates for our children along the way, and we have to get better at it, for sure. We have to approach the school with a really positive view of our child and his or her rights to an education, rights to be part of the community, and some hope that that can be achieved and some tools along the way to make it happen.

Genia:
Yeah. Yeah. And that’s what people got from The What, Why & How of Inclusive Education is really a strong foundation in inclusive education, how to think about it, how to approach your advocacy efforts and really what is possible and why it is so critically important for your child to have, if you want your child to have fulfilling life. Which of course, we all do. We all do.

Marilyn:
And I think, I think of all the things that we learned from therapists, for example, the question about therapy at school. We learned things that the therapist know that most parents don’t know, but what we need to learn is a little bit more about the education system, so that we’re better prepared to connect with it and feel confident about, it’s the job that we’ve expected the education system to do for all our kids.

Genia:
Yup, yup, exactly. Marilyn, thank you very, very much for your time today. It’s always a pleasure to spend a Sunday afternoon talking with you.

Marilyn:
Thank you.

Genia:
And thank you everybody for joining us. Again, if you are looking for a community of allies and people to support you along this journey, you can find a group of parents who get it, who are just like you and feel really passionately about supporting their kids with disabilities to live good, inclusive, fulfilling lives. You can find the group by going to goodthingsinlife.org/group. The course, you can find, as I said, at goodthingsinlife.org/inclusion. And the download, which I mentioned, but didn’t give you the link for is goodthingsinlife.org/14questions. All of these links will be in the show notes. Have a wonderful day.

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Special thanks to Marilyn Dolmage for joining me this week. Until next time!

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