Episode 46: A Parent's Perspective on Inclusion, Part 2

Transcript

Arthur: This is the Inclusion Think Tank Podcast where we talk about Inclusive Education, why it works, and how to make it happen. Today I continue my conversation with Anjali, a parent advocate. As we conclude our discussion, Anjali shares what message she would like all educators and school districts to know about autism.

Arthur: So, what are some important messages you would like to send to teachers and to school districts in general about children with an autism diagnosis?

Anjali: It’s just like a general message. Like, I think we should only look at diagnosis at a point to understand the learning style or to understand how to support kind of a thing.

That diagnosis should not predetermine what a person can learn. So that we always kind of say that, right, Presuming competence like that’s part of it. So I feel the part of what people don't understand is it's called autism disorder spectrum. Like, it is a spectrum disorder because it is a spectrum.

If you have seen one child with autism, you have only seen one child with autism. I have two children and they are my kids, but the similarities are less i in their way of learning, in their way of how they are. Like all of us. So I just feel like that is one thing sometimes that's missing everyone generalizes the individualization. Like people kind of not knowing how that intervention supports, they feel that, okay, it’s support.

Like I'll just give a simple example. People think that visual learners, that is what most of educators are like kind of more used to. It doesn’t mean that every child with autism is a visual learner. You will have sometimes children who are very different. Like I would say for my example, for my son, who has like difficulties to learn certain things visually, because of some of the conditions, he's a very much a tactile learner kind of a thing.

Just giving a very specific example there to kind of just to put that thing that they all have very different learning styles. So doing all the the things don't overgeneralize to strategies like we all have like simple strategies and accommodation and we feel like it's like a magic thing that will work across the board for anything.

Anjali: And the second thing is always to look at the fidelity of implementation. It is not always the fault of a child with autism that you judge that they cannot learn. No, it is sometimes like we are doing the same thing over and over and kind of expecting a different result. It's like the textbook definition of insanity that like you try the same thing and you kind of say, okay, the child didn’t learn then they get to try the same thing and say the child they didn't learn.

And then you come to a conclusion that the child didn't learn. But like so there are things and I feel I don't think it's a reflection of that are a bad teacher or something. It is just that you are putting in a little more effort to understand this child and forgetting that you have seen another child with autism.

But no matter for that, another child with another diagnosis, you just look at this child with a fresh eye and met that child where he is or where she is and provide the supports to keep them, and teach them.

Anjali: Sometimes they learn at their own pace, but that doesn't mean that you stop teaching them and don't come to the conclusion like I have people time after time,

So they may never learn that. And I feel, who are we to…maybe I am advocating more because I have two children with disabilities, but if I had a penny for every time someone told me what my children can not do, just like I would have been so good, with what I collected. But always they have come ahead.

But I'm saying that we all don't have to do the same thing. We all don't have to learn the same way, but we still can learn. And I just feel that just don't stop that. The educator’s job is to teach, just teach and just try to understand them in that way. So that is one thing I would say. I would say that when I'm sitting at the other end of the table and listening to people, people are always going to talk to me about the deficits.

And as a parent, it is like it is personal to me, and for everyone else it is a profession. But for me, this is personal kind of thing. And I feel it depends on the strength of the parent to kind of push back and say no. And sometimes people will think that you are unrealistic parent for doing that. But I don't have to grow my child's competence for anyone to teach my child.

And I feel that is sometimes as a message to educators that they don't have to prove their competence to begin with. You just have to presume that there is. And then that's a clean slate and you go from there and with parents, you can have honest communication with us.I think every parent will be more willing to help their children.

Anjali: I would give a little credit to parents with children with disabilities, we do it twice sometimes because we have disadvantages in other areas. So we will try to work twice as hard as another typical parent to make it work.

So having open communication with the struggles and how we are working, helps.

And I will tell you that experience because same I have some amazing teachers for my little one and I put that word because sometimes you had to appreciate that I never hear a problem.

I always hear a solution. Do you know how good that feels Sometimes?

It is like you feel like there is someone with you to work with you or your child. And it is not that my child has changed from that situation to end of the situation that or magically all his difficulties disappeared. No, but there was someone who is still believing in my child and kind of trying to put that effort and he's showing results.

So if you believe in the child, I think they will definitely show that result. So there is this thing that is I don't think you have to invent reinvent the wheel to teach these children. It is only that attitude that has to change a little bit. So if that changes, I think everything else is.

Because I went to school for this, and I don't think that they were teaching you so many things how to teach and how so many things, you get to learn so many things through that experience. I'm not discrediting that fact, but I think it's all that matters is attitude.

The ones who get to be the best educators are the ones who believe in their children and that you have to just trust, and for our children, sometimes we have to put a little more trust because the way they progress might be slower. So you just have to believe them.

Anjali: So I think, yeah, that is what it is, presuming competence. I just got that one, that two words consolidate everything that I was trying to say.

Arthur: Yes. And I appreciate you saying that if you keep teaching in the same way, and realizing that the student is not getting it, maybe you have to switch it up and implement it and show the material differently.

And, not everybody is the same where, like you said, not everybody is a visual learner. you have to present the materials in different ways for the students to understand and to get the information. and not focusing on the deficits, focus on a solution and how you can help the child better understand.

I think that those were really good points that you that you brought up because it's, you know, for for me, I, I can remember being in school and math not ever being a subject that I could ever understand. It just made no sense to me for some reason. And even with the teacher explaining it and going before school or after school and but when I had a peer, another peer explained it to me, it was like, Oh, that makes sense, you know?

And that's how it was like my whole life with math. Like if I could sit with another student in the class and they could somehow break it down for me, it was like, Oh, okay, cool. Like I get it now. But every time the teacher would try, it's like, Yeah, that makes no sense to me what they're saying. I don't get it.

So there are different ways that people learn and different ways to deliver that material so that, a child, a student is able to better understand, comprehend and learn the information that is being presented. So yeah, thank you for that explanation of it all.

Arthur: And just one last question for you. And that is, as a parent, what advice can you give to other parents who are working with their school districts to help have their student included in the general education classroom?

Anjali: That is the toughest one. Because there are so many, so many things that are hard against what how it kind of one thing I would say is like persistence and resilience, and that is very much a characteristic thing.

I would kind of say, because like, how do you get there? Because when the diagnosis come, it's this reality. And I don't know, I don't think people are doing it intentionally. I mean, maybe on the good side, I’m going to say that maybe they're not trying to do it intentionally because that is what they know better.

They feel like we have a separate environment. We kind of have we can teach all these skills and kind of stuff, and then we'll get them ready to kind of before we teach them all the skills. But the difficult part that I just say one of the parents to understand is teaching all the skills in isolation and sometimes doesn't help you to kind of get that real experience of it.

Anjali: And for parents, like if they wanted to kind of you need to have a strong conviction of why you want inclusion for your child. So I would kind of say, think of your child when they're going to be adults, and what do you want your child to be, with or without disability? Where do you see your child? Go back from there if you want your child to be there.

And I know as a parent, I know where I want my children and I can come first and say most of the parents are thinking the same line, what I'm thinking. So from that point, I'm kind of saying is like, look back. If you had to get there, how do you go about it?

Do you think that having your child in a very separate environment would help them to navigate everything, what they are thinking and get them there.

At the end of the day, I think there will not be a single parent who says that I don't want that employment situation for my child. That's what I'm thinking. No parent would think about that.

So if you want your child to do a job, what is the skill? So what are the soft skills that are required? What are the skills that are required for your child? I mean, whatever job you kind of are thinking.

Anjali: And also another thing is like for me as a parent, I was not ready to kind of think that, okay, there are five jobs. These are the only five jobs my child should be doing. So for me, it was like developing those skills so that they will get there. So if you look at like in some of the separate settings and all those kinds of things, feel like there is a predetermination of jobs.

There are so many blogs people write about different job skills that are available for people with disabilities. I'm not saying any of the jobs are bad, but it is like this way people would say this it is food, flour, food or all those kinds of things. It looks like you're preparing your child to kind of do that.

But so I just feel like it's not anything wrong or it's not to be blamed on any of the parents or any of this. I'm just kind of questioning those thoughts at this point. But when it came to my children, that’s exactly what I’m expressing that I feel they should be educated in a general education classroom so that their learning increases, be that be me.

Maybe math might be a difficult subject for a child. You can have an adapted situation for the child you can have. I feel like sometimes people don't understand what can be modified. You can have a modified curriculum for your child, you can have a lot of accommodations and modifications for your child.

Anjali: But the only thing that you have to be ready for is many people telling you that your child might not be able to learn. Your child is not at the same pace like everyone else. Your child is not ready yet. And there is these are the things that I have time after time covered. But for my kids, I have volunteered for other families like, you know, I have heard that. But it is like but I think you should kind of maybe peer through one here and leave it through the other.

One of those things which are coming is a deficit. And see if you hear a deficit, you should talk about what can we do about it. So the always the question should be a solution to what the problem is. and I'm not saying it is easy. It is always kind of going to be a back and forth and then kind of trying to understand each other’s end goal, But you have to be persistent,

It's not an easy ride because when you are putting your child in a general education classroom, you have to think that your child will be compared with a lot of kids who don't have a disability. You should be okay with that because as I said you should have a strong conviction about what inclusion means for you so that the first thing is acceptance that your child is different is a neurodiverse situation, and your child may learn differently.

Your child will learn at his or her own pace, but it should be something that you have an understanding when you put them in a general education classroom. They should not be that all their disabilities should be gone in one minute, and then we kind of get all those things. So I feel like those things should be very clear where you feel that to be a good understanding of your child, you should have a good understanding of your child so that you can have a conversation with the teachers and all the people.

Anjali: To have all those things, patients I feel is key because there have been so many times when I have, I would like to consider myself as a very patient person, but since that is so many times, you would not be able to gather together because you're always hearing things that will not, like deficits.

No one talks about the strengths. So I feel some of the burden because there are people who will still kind of do that. So you should be very, very much should have a clear vision for that part, and you should have that resilience to go through persistent every time to go through and then know what your rights are as a parent.

Anjali: That is something very important. I would tell any parent to know, know your rights. That is rights for you as a parent and the special education process. Know that. Because the more you have education and knowledge about it, the more empowered you feel and you will have the right information and have the right information like have the trainings have there are so many organizations out there that will give you that parental training and all this kind of stuff be involved in something so that part.

But to get inclusion, you should have a strong conviction of inclusion, why you needed your why you should be very clear, because that makes it much easier because otherwise, it will be like, you get tired. I will be very honest. You get tired day after day advocating. This is very real kind of thing since I have two kids and two kids are two very different day after day, this tiring process.

It's a very exhausting process. You get good teachers, you feel so happy, So and a team. It's not only teachers that are therapists, there are so many people in it. So I would just kind of say, learn to educate yourself about the process that will do some part of your job and then keep your conviction very clear and then can be very persistent about it and then pick what you want for your child.

That mission statement, the mission statement that you have for your child will lead you the way. So, I mean, it looks very easier than said, but no, it is about I'll be very honest, it's not reality that is not easy. It's simple. It looks like that But, it definitely has its like, you know, advantage for future.

So it's worth the fight.

Arthur: Patience and persistence and knowing your rights all of what you said is so important and as you shared, the journey is not easy. It's a long journey, but it does have its rewards in the end. Just sticking with it. And I think, one of the many important things that you said is, knowing what you want for your child is, so important and just to remain focused on that.

that is the reason why you're going through this journey and the end result will be worth it.

Anjali: And to include because I have very young children. So again, I'm talking at this point, I think I'm talking about how I see the things at some point that changes to what they want.

And I wanted to add that part because, I mean, my kids are younger, so it's all me. I think it's like that navigating. But at some point it is. It should be they they should also be part of that conversation. And how they are going to kind of navigate these things. So to put that to because that is very important, it's it's our journey together.

Arthur: Yes. Thank you so much for this conversation. I am so excited for everyone to hear this conversation. I know that it will be very helpful to everyone who listens and to offer this great insight into your story and your family's journey. And so thank you so much for your time today. And I will look forward to sharing this with everyone.

Thank you. I really appreciate it, and I was happy to do this.

Arthur: Yes. Yes. I appreciate it. So thank you. And have a great day.