Speaker 1 (00:03):
Welcome to The Good Things In Life podcast, committed to bringing world-class ideas, conversations, voices, and thought leaders to parents and educators. So kids with intellectual disabilities will have the support they need to build positive inclusive lives at the heart of community. Here's your host sister, mom, researcher, writer, speaker, and perpetually curious Genia Stephen.
Hi, my name is Naiomy Ekanayake. This is my story of inclusion.
Naiomy , thanks so much for joining me and being willing to tell your story today. I am really very, very grateful.
Thank you for the opportunity, Genia.
Yeah, so we have gotten to know each other over the last year, um, because you've been participating in our foundation's course on Inclusive Education. The What, why and How of Inclusive Education. And I've been really, really impressed by your dedication, your passion, uh, and your pursuit of sort of ever deepening understanding of how you can support your boys to have a good life. And I, I just want to say that out loud, how impressed I am by you and how grateful I am to have gotten to know you over the last year or so. Thanks Naomi for being one of my people.
Thank you Genia. I really enjoyed, uh, coming to your workshops and I think we never stopped learning. Like every time become a session, we learn so many things from you and from other parents and from different, uh, different subjects. So I still keep on learning. There's so much to learn and know.
Yeah, me too. Me too. Well, Naiomy , I wonder if you can start by sharing a little bit about your family.
Yes. So I have three children, my twin sons, they're 14 years old and my daughter is three years old. And today I'm really going to talk about my twin boys who are 14 years old and how inclusion began for them and how our journey was from beginning to end, just to be still on the inclusion journey.
Yeah, it is always a journey. I don't think we ever really arrive at the end of that. You know, it's not a destination. Um, so much as a, as a path we walk through, through our lives.
So Naomi, tell me when the boys were really young, what messages were you getting about the best way to support them?
Yes. So when they were small, uh, when we were looking for schools, uh, the first school that we approached was our community neighborhood school. Uh, the principal, they offered right away, the diagnostic classroom, the special needs classroom. And, um, we had no information about inclusion that time and we trusted the teachers. We believe the principal and we thought that they do better than us. And there'll be selected the segregated diagnostic classroom at the beginning of junior kindergarten.
And how was that for the boys?
Uh, they were really not progressing. They were segregated in that class and there, the behaviors was worsening and, uh, I could see no improvement or hope for them truly in the class. It was always some negative things that I would hear about them.
And how long did they stay in that program?
So they were in that, uh, uh, junior kindergarten for one and a half years. And then they went to ABA program at Aisling full-time, uh, for two, uh, two years. And then, um, after that, we were looking for schools.
And how was the ABA program for them?
The ABA program was full day. We used to drop them, uh, that too with all, uh, children with special needs. So it was no social skills. They were not getting any social skills. They are, uh, ABA was helpful in, uh, reducing, uh, like their behaviors, but it wasn't completely gone. It was still there. And, um, we had no idea how to go about, uh, getting them in that social skill.
So it, it made them more compliant, but didn't necessarily help in their personal growth.
Yes. There was ended on someone, always someone helping them and dependent on someone prompt dependent.
So what started to change, like you said, when you first went to the school to register the kids for junior kindergarten, you trusted what you were being told. So how, when did you start to question that?
Yes. So while we were, um, we were at that ABA program, we were introduced to extended family. Uh, that's an organization that, uh, is talking about inclusion and I was invited to few of the workshops and I was able to find a coordinator for myself. And when I learned about the inclusion and how we have rights as parents, and also to understand other parents, their journey, and they have how they have come across, um, uh, being in the segregated class and being in the regular class and how they have improved learning about their journeys helped me to, um, try this new approach.
Hmm. What did that time feel like for you?
It was really confusing. Because we weren't trusting the teachers and the principal, and we were having another message, another idea that came to us. So we were, uh, afraid to try. We were afraid to try new inclusion idea, but, uh, we saw great progress in the children who have done that and tried that. And, uh, uh, we, we found no hope in the segregated class for our children and we could not see any more future, any hope for them in the future being in that segregated class.
And I think that's really interesting. The, so part of what part of what helped you to make that leap was seeing other kids have possibility introduced into their life?
Yes. Yeah. It would be go for workshops. It would have a family talk to us and they would tell us their journey, how they were in the segregated class and how the day went to typical class, regular class. And they saw improvements in their children and how their social skills improved and how their life has changed.
And so you said it was really confusing when you, um, by the time you made the switch to go into regular the regular community school again. Um, how, how confident were you? Were you still feeling a little bit uncertain and confused?
Yes. So I was a lot, I was already afraid because whenever we go and approach the schools, we've been back to our neighborhood school and we told them that we want the regular class for both our children and they refuse to give us, so what we did was we were introduced to another school that is not a community school that was far away from a home and they've offering. They were trying to offer one of my sons, the regular class and the other son's special needs class.
And that was the only option they were saying. They didn't want both our children to be in the regular class and the neighborhood school, uh, both, uh, Catholic board and TDSB board both, uh, refuse to get us in the regular class for both the children. So we've offered another school far away from home, but only one son could get the regular class and the other son get this segregate class. And also the regular class was offered to my son, hoping that it might fail. And I would change my mind and put him back to the single,
I didn't know that part of your story. So can you tell me a little bit more about that? Like what, what were you being told at that time?
So I remember going with one of my El coordinators from extended family, we approach both the school boards. And when we approached, uh, they refuse to be, we're telling them over and over again, we, we met to meet the principal. We spend more than one hour talking to them and telling her ideas and telling that we are coming from Aisling Discoveries and they've been in the diagnostic classroom, but we want to try in the regular class, but they refused. The first one they said is no support will be given. And we do not have classes, uh, uh, regular classes. We will not take your children to the regular class. Uh, I remember coming out of the meeting fully confused and crying and desperate to find a solution. And the only option they offered was another school far away from home. And that would be only giving one son regular class and the other segregated class.
And you, you said Naiomy, that when they were offering one of your sons regular class, it was offered with the idea that it would fail and you would go back to accepting, um, segregated programming for both of your kids. Can you tell me a little bit about that?
Yes. So many times when we approached the news, uh, coming, uh, the school that is far away from home, uh, they were not welcoming us whenever we go to talk with the teachers or the principal about my son in the regular class. I remember always, they were pushing me back, telling me to put my son back to the segregated class and telling all the benefits of segregated class. And I was not taking any, uh, feedback, what we want for them to do. And the teacher was saying that she doesn't have support and that my son would not get any support. She would not benefit his level of education would not improve. And all these negative things they would say, I will use to really fret going for meetings because, uh, I would, uh, hear all about the negative things and not a single good thing about my son being in the regular class. But I could see my son in the regular class was his academics were going up, even though, uh, I could see that he was not welcome in the class.
I could see him improving. And he had him having some friends around. And, uh, even though the school was not welcoming him, I could see him improving in the regular class more than my other son who was in the segregated class. And the one who was in the segregated class had always won. He holding his hand, even in the knee, uh, in the backyard of the school where they had gates around, he was having someone holding his hand because he was a runner. He used to have a running behavior. So they was, someone was always holding his hand. And, uh, also he had his behaviors worsened in the segregated class.
So what changed or how did things change?
Yes. So, um, one, uh, one IPRC meeting that I had for my regular, my son, who was in the regular class and my coordinators, she had couldn't come with me because she was not feeling well that day.
So I had to go by myself and, uh, she was saying, postpone it, postpone it, but I thought I can handle it. And I'm going to go my by myself. So I went to this IPRC meeting that they had for my son who was in the regular class. And I trusted the principal. I thought they were understanding my vision of him being in the regular class. And at that meeting, it was really a lot of people there. And they were all coming up to me, asking me, forcing me to change the class of my son, who was in the regular class back to segregated class. And after them, after all, but they told me I still listen to them. And I said, no, I still want to keep him in the regular class. And a person at that meeting said that I am neglecting my son, keeping him in the regular class as a mother, I'm neglecting your child, keeping in the regular class, you are not doing your duties properly and you will be reported.
And when they said that, I felt really like disappointed because nobody from that meeting stood up or defended me, or took my side as a mother. And they all knew as a mother, I was doing the best I could do for my son and I wanted the options. And so, uh, no one stood up for me and I left that meeting, still rejecting the special ed class. But, uh, I was very disappointed with the system and I thought I have to make a decision. I have to change something.
That's awful. Yeah. I mean, that must've felt incredibly threatening to have them suggest that they would report you for wanting your child included in society. Yeah. Yeah. I'm sorry that happened to you. So then, yeah, too.
I am really upset about that, but I'm glad that it happened. So I changed my situation to turn my situation around if that didn't happen. I think I would have still been in suffering and still struggling in that situation.
Yeah. Yeah. It just, I guess really kind of crystallized the situation for you, right? Yes. Yeah. So then what happened?
So then what I, um, I called my coordinator. She wanted to action against the meeting, but I wanted to, uh, um, I wanted to do, um, uh, find in our community, go to our regular school in our community, close to our home. Uh, we went and visited the principal and, um, we, um, went, we had a meeting and we went there and at front at, uh, at the beginning of the meeting, we said we have two children who are, I think that time they were, uh, six years old. Um, and we want both of them to be in a regular class. And this is our experience of them being in the community in the summer camps. I taught church community where there'll be typical kids. And we have seen great improvements of them being with typical kids. And we want them to experience that in the school surrounding. So we want to try both that you learn in the regular class. I told it upfront, I didn't want to go around it. I just told him in front that this is what we wanted.
Right. If you're unsure how effective your child's school is at offering an implementing inclusive education, you can download a free PDF. It's called How Inclusive Is This School? 14 questions Every Parent Should Ask. You can access it at goodthingsinlife.org/14 questions. That's numeral one, four questions. And if you feel like you need to build your strong foundation in inclusive education, then keep your eyes and ears open because we'll be opening up the foundations course. The What, Why and How of Inclusive Education on July 22nd, you can't register yet, but it's coming.
And what was the reception?
So the principal was welcoming in this neighborhood, a neighborhood school, and she could see that we were determined to get our children in the regular class. She was mentioning that we would not have the support that we wanted for the children to be in the regular class. And she was, uh, giving us, uh, two sides, but we still, we didn't want to change, uh, uh, what we requested. And we wanted to go ahead. And it was the middle of the school year. It was not the start of a new grade four. It was like middle of first term was finished. So she was saying, do you want to wait until, um, the full year has gone and joined or do you want to join right away? So, but I wanted join right away. So, uh, there were so many difficult situations that time, but still we wanted to join right away to the regular class for both the children.
And so what changed at that school, between when you, you were looking at schools in junior kindergarten versus grade four?
Yes. So we could see that the principal and the teachers, even though at the beginning, they were not sure what the goal was and what our suggestion of being the boys in the regular class. Um, we could see great improvements, both the children's behaviors, um, reduced. And, uh, my son, uh, Daniel used to a head but he used to cry all the time. My son, Jason, used to run away. Uh, he used to flop on the ground, open doors, close doors. He had so many behaviors. Both of them. They begin to lessen little by little, and I could see my son, Jason, who was always having someone holding his hand in the backyard. They had nobody to hold his hand in the backyard and he was fine.
He was with the children and the children were like really a good role models for, uh, two boys and they were in two different classes. So they had their own individual friends. So one was having their friends, and the other was having their friends. So they had so much friendships build up and you could see the independence of knowing how to do and go about in school and their school academics level as well, improved.
And the T was the, was the difference between like when the kids were in junior kindergarten. Um, and, um, when the kids were in junior kindergarten and you were trying to get them into the regular school, was it just a different principle now, years later, is that why you received a different reception?
Um, it is, um, because we wanted to be one to let them know that we want them in the regular class.
We have tried them in the special ed class and we were not satisfied with progress, so we wanted them to change.
So the biggest difference was you?
And knowing, being clear about what you want. Yeah. Very interesting. And so the kids are, um, 14 now. Yes, they're 14 now. And so, um, tell me about the last few years.
The last few years has been the best few years of my life. Um, I remember nights or nights, we used to cry and struggle and stress and worry about my children's school education and fretting going from meetings to meet the teachers and principals. But everything changed when they started the regular class, they began to really be independent and they began to blossom really in their classes. They used to have friends to look out for them. They had, uh, we used to have friendship circles in their homes, uh, in, uh, in classrooms.
And then it began to come to our homes. We would have a few children coming over for pizza. We would have them put any occasion, Halloween, Christmas, birthdays, uh, and meet them in summer time in March break parks, uh, different activities. Um, my children were surrounded by children who loved them and help them. So when they transitioned from elementary school to middle school, um, usually when we have a new school and we have new principals to, um, uh, approach and new teachers, we all worry about so many things by the [inaudible]. Uh, because of the children, having so many friends and people to keep an eye on them and a good report from the teachers to the new school. It was really easy to transition for the children to go from elementary school, to the middle school. And when I went on the first day to, uh, for the new school, I could see few children from the previous school going to the same classroom as my children.
So I was confident. I was not worried. I knew that children, uh, the other children will keep an eye on them. And the new teacher will, uh, accept the, uh, the children and like them. And they will really do about, and their confidence level really improved my son. Uh, one of my sons joined our cadets, uh, when he was 12 years old and he has found friends there and he still keeps on, uh, um, attending our cadets. And my son, Jason, uh, has improved so much more than I wanted. Um, I believe for him to move in his academics and his, uh, understanding. And, uh, he is very social. He loves to greet people. He he's like a social butterfly. He loves people. And, uh, they have really advanced and in our community, in our church community, the children have really advanced in doing, um, they had an art class at a community center. Uh, the children really enjoy doing that and they have done really well. And, uh, yeah.
That's wonderful. And it sounds like Naiomy, that all those supports that the principal told you, your kids wouldn't get, they received just because of the structure of the classroom.
Yes, yes. Uh, they had an EA, but that EA was not available full time for the boys and they, they were into different classes. So the EA couldn't go up and down, but they had like, uh, the children were like many mothers and dads around, um, my sons and they were really role models. Uh, my children will, uh, listen to the children more than a adult person and re really they copied their, whatever the other children are doing. And they were really doing really well independently.
Yeah. That's wonderful. That's wonderful. And so now you're facing a new transition to high school.
Yes. So now we are facing new transportation because we also moved, uh, uh, homes, uh, from, uh, uh, community to a new community, not too far, but the children still keep in touch. They have Instagram account. And, um, so they keep in touch with school friends through there. And the teacher, online teacher has been so amazing. The children got from last year March. Uh, that teacher has been helpful to connect the children to the, uh, the children in their class. Um, our children have done few, uh, activities with the other children and then for their birthday, I had them to all the friends to join on zoom, to have to grade them. And, uh, so I still keep in touch. Uh, the children keep in touch with their friends and to find out how they're doing. And as soon as we have opening where we can invite, uh, children come home or meet them in the park, we are waiting to do that. So they still build that friendship and keep on growing.
And what if some of the academic, um, challenges been moving into high school? Maybe not challenges, but just like new things that you have to, um, figure out as they move into high school.
Yes. So high school is going to be a new chapter for us, where we are going to learn how we are going to the children are going to learn. But I'm the teacher who is in grade eight now has helped us, uh, to understand more about it. Um, I think that most of the challenge would be to finding friends in the new school and the high school. And, um, uh, they are, um, uh, even though they are in grade eight, their academic level is a little different. Like my Daniel is in grade four, five level and my son, Jason in grade three, four level. So, um, it'll be a little challenge for them, but I'm sure that we can talk with the teachers and we can, uh, find friends for them that, uh, they would be able to have that accommodation that they need
And what will they be studying in high school? Like, are they still going to be, um, in regular classes?
Yes. They're going to, I have selected the courses for them, uh, the regular class. And, um, so we, uh, we have already connected with the school and, uh, we are waiting, uh, they have already sent us a map of the school and, uh, videos of the school. And we want to see if we can at least get a virtual tour or we can visit the school before school starts in September. Um,
That's smart. So working, um, working on sort of helping the kids to transition even before the first day of school. Yes. Yeah. Yeah. Okay. That sounds like really good advice for pretty much anybody, right? Like that high school, that transitioned to high school is, is big for every kid. Well, so yes,
And also I talk with my, uh, from, uh, extended family coordinator. I asked, uh, to me talk with other parents who have had experience of going to high school, because that helped me talking with other parents and they would give me ideas and tips and different suggestions. So I talked with the, I was really worried about high school, but when I talk with other parents about the experience in high school, in the typical class, regular class, and, and if they achieve their credits and if they, uh, what are they doing now? Uh, so I was encouraged with a parent that I talked with recently, one week ago. She was able to explain to me and, and help me understand their courses and, and the credits and how, what a certificate and all this information that I was missing. And I didn't, I know unaware of she was able to, uh, let me know and I'm still learning it. So I stayed, I told the prayer and that I want to keep in touch with and done, because she has already gone before me.
Ooh, excuse me. That connection with community and being able to talk with other parents. I think that most of us have had that experience where those connections, those stories, those people, as you said, who have come before us are so incredibly important. Um, especially when we're faced with the kinds of challenges that you've talked about around, you know, the school staff, not necessarily being receptive and in some situations being outright hostile. Yes. Yes. What kind of reception has the school given the high school given you?
So I haven't talked with the principal, but I have talked with, uh, two people, um, uh, I think a guidance counselor and a, uh, special ed, um, uh, person. Um, so they, uh, the feedback has been good because I've told them that I, my children have been in a regular class from grade four. And that is what we want, because I think telling from the beginning, what you want is so important so that they would not suggest you are the such as do other stuff and other things that you don't want to try, because you have already tried this experience in inclusion.
And that is what's so important and also sharing their story and achievements and how they have come from one place to another sharing that with them is so important. I think building a connection and building a relationship with someone is so important. With the teachers and the principal and the teacher, the staff in school, because then you, they really see your story and then they really see what you want and you'll be shunned. So I think that beginning itself for me, I told them how they have lost them and how much they have come and how the children have produced a book last year and how they have done so much. Uh, so well, because of being in the inclusion inclusion class. Yeah.
That's, that's great. I completely agree being really clear about your vision and sharing it with everybody that you meet at the school is really critical to success.
Naomi, do you have any most important messages that you really want to share or, um, you know, any questions that you really wish that I had asked you that I haven't?
Yes. I would really like to talk, uh, to tell the parents out there that you have hope when you have a child with special needs that you have hope. And that regular class really works for them because you are looking at not only your child going to school, but you're going to look at him being adult and how he is going to work in the community, volunteer in the community. You want to make your child independent and you want your child to contribute to the community and not be a burden to someone. So it is really good to start in the regular class, start from elementary itself to start your child in the regular class.
And you have a right for your child to be in the regular class. You can trust your instinct and you can trust as a mom or a dad that you believe that your child will do well. And, uh, you, you listened to the principal, you listen and listen to the teachers and principal and build a relationship with them. Uh, but you don't have to agree to everything that say because you know, what is best for your child. And, uh, for my experience, that is what we have learned that, uh, we can listen to them. We can talk with them. We can have a relationship with the teachers and the principal and, and talk with them and hear what they have to say. But we don't have to agree to everything because we have experienced that the regular class has been the best experience for our children and for the future it's going to be, are already building from now on for their future. That they will be known in the community and that they would find volunteer jobs while, and, uh, and also work in the community and they would be independent adults so that they would really blossom and do well in life.
That's perfect. Thank you so much, Naiomy, thanks so much for joining me today. I'm really, really grateful as I've said for your time today, and just also for your valuable participation in the courses and workshops that you have attended. So thank you so so much.
Thank you, Genia . Yeah. Thank you. I really value you as well. Thank you.
Speaker 1 (31:33):
Thank you so much for joining Genia on the podcast. We hope you enjoyed today's episode. See you next time.