Episode 45: A Parent's Perspective on Inclusion, Part 1

Transcript

Arthur: This is the Inclusion Think Tank podcast brought to you by New Jersey Coalition for Inclusive Education, where we talk about inclusive education, why it works, and how to make it happen. This is part 1 of my conversation with Anjali. Anjali is a parent of two children who were diagnosed with Autism and Fragile X Syndrome. She shares what their family’s journey has been like working toward inclusion in their school district.

Arthur: I would like to welcome everyone back to another episode of the Inclusion Think Tank podcast brought to you by the New Jersey Coalition for Inclusive Education. I am back with a brand-new episode. I am your host, Arthur Aston. My guest today is Anjali and I am happy to have you on as a guest today to share your story and your family's story with us for this episode.

Anjali: Sure. Yes,

Arthur: So to get started, can you just share a little bit about yourself and about your family with us?

Anjali: So my name is Anjali, and I live in New Jersey with my husband and two kids. I have a ten-year-old girl and I have a seven-year-old boy.

Both of them are diagnosed with autism and they were recently diagnosed with Fragile X. They go to the public school in Berkeley Heights. And that's so family kind of and what I am afraid to say something about me I have been as a software professional for 14 years. Then I took a break after my little one.

And then I've taken a lot of programs in advocacy and stuff. And then I went to school and graduated in special education. And so right now that is what I have done and I mostly have kind of done volunteering things and all-around inclusion stuff. So that is and that is all about me.

Arthur: That’s awesome. I like for people to share their stories from their perspectives. It's better than any introduction I could ever do, for the guests. So that's why I always try to start off with a version of that question, allowing my guests to share information that they would like to share with everyone.

As you mentioned, your two children have an autism diagnosis and also a Fragile X diagnosis.

Can you talk about the diagnosis that your children received and the difficulty you had with getting the correct diagnosis?

Anjali: Yeah, I think that was the biggest journey for us because getting the diagnosis was not that easy for us. If I had to talk about my daughter, my daughter was not like she was mostly on all her milestones on time, except when it came to speech.

When she was speech delayed, we come from a multilingual family. I speak a different language my husband speaks a different one. And when together, a different one. So just like that, we and my pediatrician always used to say it's a multilingual family, so it's all the language delay was attributed to that. I think the most important thing that when people look for autism, all these diagnoses are the stereotypes.

And she didn't have those things. And so my pediatrician was I don't know, wasn’t worried., or they had less information about a profile like her to have autism. And so we didn't have anything. And even my pediatrician did not tell me anything about early intervention. So I found it from a colleague of mine.

Then we went through that road and meanwhile, I had my little one after that is when my daughter got the diagnosis and then two years down the line, then my son followed the same journey and got this diagnosis. But for him, he had a few more things that were kind of standing out. And like my daughter was just the profile was a little more different.

But the one year there was nothing kind of but so getting the diagnosis was not very easy. Maybe now I could relate to so many things because I said about the Fragile X diagnosis, I could relate some of the things because the fragile X have a very different profile. Maybe that was one reason my daughter was not kind of say they have a lot of autistic traits and sometimes they don't have it.

So it's like a very much different one than fragile X. So but the fragile X diagnosis came very like late. I got the fragile X, They were they had an autism diagnosis for some time and I got the fragile X diagnosis only last year. So we lived with the autism diagnosis for almost four or five years.

I don't know, does it change anything? I would not say not in that huge way. But not knowing this profile would have helped about how the learning things were so always a diagnosis. What I would see as a diagnosis is something to know them a little better so that you can profile them a little more better, then give them the accommodations and you know the learning style and help them through that way.

Anjali: So I felt having the diagnosis a little early would have helped me in those things. But either way, I don't know for me, but maybe for someone else in my daughter’s case. But for my son, I would say there are so many things that I face difficulties and everyone pointed it out to so many autistic stereotypes that was explained well as a medical situation in Fragile X

Anjali: because of something like I would say, there were frequent ear infections and I felt okay my son could see, but still I felt that he had struggling, focusing to read. And that is sometimes explained by a condition called strabismus that is very common in Fragile X.

But when I took my child to doctors with an autism diagnosis, they will always say, Well, this is a stereotype. This is like something that autistic children do. It's everything was kind of, I think, bundled up in that way instead, which explains much because now I have research papers devastating this condition exists.

That condition exists. So there was something that we can narrow down. So I feel there was a lot of so knowing a diagnosis help that in matter. I mean if I got that earlier it would have been better. But going through that medical process also so very difficult. I mean, so I don't know that was the process.

It was quite a process. I would say like getting that one. Even my when my first born, if they have even tested me, we would have known that Fragile X diagnosis. diagnosis. And Fragile X is one genetic noncondition for autism. Knowing those things would have helped and I feel that lack of awareness in those areas about the diagnosis.

Anjali: So it was difficult. If you get to the right people you get that one. But otherwise sometimes it's a journey. And mine was, I would say I always had the people who didn't know about it, but then I met someone at a later point. And so that is where all of our diagnosis journey was.

Arthur: Yes. And I appreciated what you said about, when you have the right diagnosis that leads to receiving the right assistance, the right help and to help out, the children with the diagnosis and the journey that it takes some time to get to the proper diagnosis is quite draining at times, I'm sure, and it's just to stick with it and how things are often grouped together. But, every child is an individual and that is what is, I think, so important to remember that every child is an individual.

And like you said, you would take your children and they would say, oh, that's because of the autism diagnosis. And, and it's like, yes, and maybe not.

Anjali: So you would like people to listen to you a little more because, and I feel like, you know, the friend I like to diagnose, even though it's not something that I wanted, but I say it gives a little more answers.

But then I feel okay when that autism spectrum is too wide. Like, I think some of the people might not get the right answers because it is like too big to kind of narrow down some of those things.

Arthur: So yes, So I would like to switch the conversation just a little bit and talk about inclusion and how you view inclusion and what your experience has been, with having your children included in the classroom.

And why do you feel it is important?

Anjali: So I would say, I will tell you, I think that inclusion part thing is a more matter down into what my personality is kind of. If you asked me to introduce myself I find I find it always struggling to say what pieces to say so in an inclusion that I think I would say that.

So for me, even before receiving any diagnosis or not knowing that my children are different in their own ways, inclusion was very important for me. I didn't know the benefit of it. I would be very honest. Like now I know the benefit of it and I very research base boy and then so many other things.

But at that point when initially the first place where I decided that inclusion part, I didn't know the benefit of it, I just felt that I needed that inclusion because I did not feel that my children should be separated in any means from their peers.

Anjali: So for my daughter, I would just kind of see as a story storyline for that that this like my daughter, she was having early intervention.

Then she went to school and she was in an inclusion classroom at that time in a pre-K inclusion classroom. And I liked it for that part at that point because we only have an IEP and for people an IEP, is an Individualized Education Plan. And what it was not at that point, she didn't have a diagnosis, so it was all well and good. We were in a regular classroom. We received all the extra support and stuff.

Everything changed the moment we received a diagnosis that when we got the diagnosis of autism from the day, the previous day to the next day, what happened in the IEP meeting was that they decided this class is no more right for my child something that I was not prepared for.

I have heard stories, but I didn't know anything when that first meeting. I still know that how ignorant I was about the system and how it works kind of thing. And when my child was asked to move to a classroom, she was three, four years at that point. And it was so difficult for me.

And only difference was I always tell anyone I said that the only difference was getting a diagnosis. And that time they said, okay, your kid would do better over here. So there is a lot of discussion that happened that something that was right for my child changed overnight like the educational situation changed. Like they cannot learn any more in this class.

Anjali: Everything just changed with that. And I remembered some of the things that I always looked at. A lot of that is what is in now code seeing that, okay, the use of supplemental like, you know, aid and services kind of a thing. And I remember taking my code book, I like it a friend of my administrative code book and talking to them that, hey, we can do all these things.

But I would say that at that time I didn't know. Well, to explain that much, but I know that this could exist. But at that time, the conversation didn't go well. It was all everyone making me believe that this is not right anymore.

Anjali: And at that point, inclusion was very important for me because I felt if she is a child who talks less does not have that language, why would you put her in another place and where everyone is learning to speak or talk, Why would you put them in an environment there, and not among the people who have more like language and stuff from them so that they can learn.

So it was like a different the body kind of say that that logical sense of you doesn't accept that part. That doesn't make sense to me. Whatever you're talking. Look it maybe other than your experience of it, but nothing makes sense to me.

So for me, that inclusion, that benefit of inclusion, what I was thinking is you always have appropriate peers to learn from. You always have a situation, and also your comparison of learning. We all say everything is relative. So for you, it is related to what everyone else is learning. Maybe your pace is different and I was okay to accept.

Not being unrealistic, but it was okay if my child learns a little slower. I was okay with that, but I just didn't feel well. I will still not be teaching them the same things. Why would you kind of think that is? A separate classroom would work. So for me, inclusion was important like to me because I was always seeing things through how, oh, the reality of our world is like.

If I'm if I'm considering myself as a person with without disability and how would my reality be that I am in the real world doing stuff and kind of doing them? Why would my child not able to do that? Or why would my child be not taught to do that? So for me it was just experience that you need to experience the same things, even though your experience feels different.

And that is how every one of us that even though if we are with disability, without disabilities, our experience is different.

Anjali: So I for me that inclusion, that is one reason why that inclusion was so important, because that was closest that you are going to be to real reality, your real life, what we call it, or our real experiences, what we call it. So and what I see is benefits is like what all of us think of like that's the same even my child.

Children with disability or without disability, this is what I would kind of want them to be independent, get a job, and do their own stuff. And if you have to navigate all those things, you have to have that experience of it, not in a separate place. Because if you have all of those separate experiences, how will you bring it together?

So, those are the things I had, I feel is common sense, that those are the things that you see as benefits. You don't have to have research or you don't have to have like, you know, people writing papers about it. It's just common sense that this is the normal experience that people should be having. So I think that is what I want.

And now I would say as a fear of a parent, I like as a spirit because I have two children with disabilities, that is, when I'm not around, they should be able to navigate. And I feel if they're not included, I don't think they will know how to navigate. So these are all benefits and I think they overweigh everything that people think of so that is why inclusion is very important for me.

Arthur: I loved what you said and I was holding on until you were finished to respond,

Anjali: I could talk a lot about inclusion.

Arthur: It was so great though. I love what you said that we have. They should have the same experiences although our experiences are different. Oh gosh, that was so good. I enjoyed that. We have to, and I love the thought that you said about, you know, for a child that is, not expressing themselves, with language, why wouldn't you put them in a class in a position where they could possibly learn more language from their peers?

I was like, oh, my gosh, that's so true. And something I never thought of in that way. That was like so well said. I really appreciated breaking it down in the way that you did. That was that was that was great. I was like, yes, that was so good.

So important to mention. And again, like all parents, you want those same things for your children and like you said, for them to when you're not around, for them to still be able to navigate and, experience the world and things around them when you're not around, that's the wish for every parent and for every person.

I think that our children and our loved ones can experience the world and get around in a world even if we're not around that. So well said.

Anjali: This is just so kind of to add to that. The first place kids, everyone sees each other is in school system Like they see that in the school. They are young. They understand, and they grow with that. They are kids. Then we become adults. And it's like that is that cycle of life. So I feel that younger kids, they should see they should know this is how to be. That is, with disabilities or without. People without disabilities should see them to see how different they are or how different they think.

And we are all different in our own ways. So I feel it grows together like be kind of that is what we are. A society like that we have to kind of that neurodiversity should be there kind of and if we are not seeing them as adults.

I have still people who don't know how to respond when we talk, when I talk about disability of my kids, that is because that is not the norm. People become uncomfortable and I feel that we if we normalize those conversations, it will become normal like it is playing. And I always bring that common sense. And it that is that is what is the importance of inclusion that we feel that it is normal to be different.

Arthur: Yes, it is. And as you said, we're all different. We all have different experiences. And the earlier that we can experience those differences, it makes it better for, as you said, when the children grow up to be teenagers, when they grow up to be adults living out in the real world on their own and their places of employment and college and,, beyond. The earlier we can make this happen and the earlier that the younger children can, you know, can experience diversity and differences, the better the world will be.

I'm so glad you took the time to really break it down that she did. That was really, really impressive. I really appreciated that.

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?

Arthur: This concludes part 1 of my conversation with Anjali. Join us again in two weeks when our conversation continues and Anjali shares advice for school districts on how to effectively include students with an autism diagnosis. Be sure to subscribe on Youtube, Spotify, or Apple Podcasts, and don’t forget to follow us on social media At NJCIE. Until next time.