Episode 40: A Family's Journey to Inclusion, Part 2

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 two of my conversation with Maureen from IncludeNJ and a parent who is advocating for her child to be included in the classroom. Listen to find out what advice our guest has for districts and other parents who are working toward a more inclusive environment for their students.

Arthur: So the last question I have, it's kind of a two-part question, and that is what advice would you offer to districts and what advice would you offer to parents who are seeking to have a more inclusive school environment?

Parent: As for the districts, from my experience so far, I would want them to understand as parents of Neuro-divergent children that we are already worried about so much for their future, for their social behavior or social standing of their friendships. Are they going to have good connections with people?

We're already worrying about so much that you have to, For example, in my situation, I feel like they have to worry about their day-to-day educational environment now and worrying about are they being included. Are they somehow being, separated still every day? I just and when I'm speaking to the people, to the people who make these decisions in IEP meetings, I almost feel sometimes so frustrated that they can say things so easily about separating my child or what they need or what they're lacking.

Parent: Or, what sounds to me like complaining about my child because they're a distraction. We have enough going on, we don't need that, and the districts to be making it easier for parents to feel that they're a part of that school and part of the school community itself and that our children are being embraced and that their differences are not causing the divide or to further divide them from their peers.

However, it may be, finding ways to keep them integrated as much as possible from their earliest stage possible while still supporting them and their needs and having their modifications or accommodations in the classroom. It's so important that the districts kind of help the parents. Kind of most of the worry about this we got you because that is how I felt in the other state.

It was something I never thought about. We had the support. We have them because we didn't feel constantly worried and stressed every day about what's going to happen, what's going to happen today, what's going to happen tomorrow, and what does the future hold for my child when all of these things are constantly…They are being separated from all of this day-to-day stuff, that in the future they're not going to have that kind of…I’m not going to call it a luxury, but no one's going to be separating them from things they are uncomfortable with.

Even things like we think about bullying. I know that one parent had described that one of the teachers said, well, I had to protect your child from bullying today. And it was funny because I didn't expect the parent to respond the way they did, but they said, well, my child also needs the tools to be able to navigate that, whatever the bullying, I think it was some kind of verbal something like they were saying something to them.

They were younger. So, it wasn't anything physical or anything like that. But the parents didn't treat it as, oh, like grateful that this teacher was protecting her child. She almost felt like my child can't even experience all of this and know what to do in those cases.

Parent: So you're not actually protecting them. It's you need to create or teach or put them in experiences where they know how to navigate something like that. So you protecting them is in fact only further separating them from understanding what's going on around them.

So the districts, I just feel like when want to refer to districts like case managers or, the directors when they make these decisions about keeping these kids separate, like keep in mind that you think of it as your child, want your child to have the most robust educational experience in their schools, and how separating them and putting them in a different classroom, what kind of experience is that? So just to kind of keep that in mind that anyone wants to add to the district part of that.

Maureen:  I think one of the things too and it's frustrating. We here in New Jersey have been I've been involved with NJCIE and I've been involved with IncludeNJ and I was a school administrator for way too many years. We've been talking about inclusion in New Jersey for just so long and we just can't seem to get the needle to move. It's just frustrating when you go to other states, you hear from other states and how they've been able to move inclusion along.

We're all just people. So I just for the life of me wish that districts would just embrace the idea of inclusion and then figure out how to do it appropriately. And I think that’s part of the problem is the first step in this is that you just have to embrace it and you have to say, we're going to do it, but we have to figure out how to do it.

And I think that that's the hard leap that districts have to take, is to say those words that we are going to embrace inclusion. Now, our challenge is to all sit down as professionals, parents, and kids, and figure out how to do it. So I just wanted to throw that in because we have been talking about inclusion in New Jersey, I think, for just way too long.

And it's just time to just do it. I sound like a Nike commercial, but just do it!

I cut you off on your last question.

Parent: No, no, no. I was saying, like anyone who works at the district, because it's an education in itself trying to figure out how do these changes occur, How can we…where does it start?

I'm still trying to understand that. How do you make that change?

Maureen: You know where it starts? It starts with parents like you. That's where it starts.

Parent: All right. Well, I'll do my part as much as I can, but and as for advice for other parents, and if you're seeking an inclusive environment, inclusive educational setting, I think, as Maureen said, listening to podcasts such as these that have parents talking about their experiences and their fight for inclusion is a great way to start.

And just getting educated about your rights as a parent. I feel like, we get these handbooks or your right to the parent or little rulebooks everywhere handbook. I feel this way about myself, where I often kind of disregard them just glossing over there they exist, but then you don't realize how important they are when you are not getting your say about your own child.

This is kind of the struggle we've had here where all of a sudden, even like includeNJ Maureen, is highlighting to me your right as a parent is this and they can't do this, and I didn't know because I didn't educate myself. And now on what my rights as a parent are or what rights as an individual in special education, what rights these kids or what rights they have or what they're entitled to.

Seeking the advice and help from organizations or advocates for inclusive education in general. I mean, I speak to anybody and anybody who will listen to me about it because I like hearing about other people's experiences as well. And it's like these parents who I don't even think oftentimes have been parents and didn't even think that there were any issues surrounding that kind of thing. But the moment I talk about it, they seem to all have a similar experience here.

Parent:Everyone has seen the struggles. Not everyone, but two people. A lot of times the people I've spoken to have struggled with something and they're struggling with with getting the support they need for their child or creating a space where their child doesn't feel that they're standing out.

Maureen: And one of the things that IncludeNJ is going to be starting is we're going to try to set up parent-to-parent networks, parent-to-parent exchanges so that parents who are all facing the same issues and there's a lot there's lots of them out there that we work with there that are facing the same issues, just don’t have an opportunity to talk to each other.

Because, a lot of times we talk to parents, we help parents, we educate them, but I think giving parents the option of, talking to another parent who's going through the same thing in another district and, how did you do it?

Bouncing ideas off each other. I think there's some real power in that.

Parent: Oh, yeah, I agree. I agree. And then just I remember like one of the first things I was told, I guess from you and Monica, I think I mentioned it as well, from IncludeNJ is don't agree to anything on your first IEP.

And it's like no one ever told me that. Right. So whenever parents start talking about something or if their kid needs support, that's like almost like the first thing I say, I'm working with this organization, the first thing they tell me is don’t agree to everything. Even if it sounds like so great, it sounds so supportive and helpful for your child.

Read it, read it, read it, read it, Reach out to someone who knows about it, research it on your own because you don't know what you're agreeing to. In my case, I hadn't been educated enough. I didn't have an organization to reach out to at the time because I didn't know. But,, we agreed to this because they sold it to us in a way that was like, this is good for your child.

But as time went on and on and on, we're realizing, But you're not treating my child as an individual anymore. And you have to remember that an IEP is an individual. It's a stand for individual education plan. Correct. So they're fine when it is an individual education plan.

So you should really be weary when someone suggests that they should be in a separate classroom, because how do you know that is what my child needs? If that's your first thought?

Parent: My child's needs might be different and that might not be good for them. If you segregate them somewhere in some classroom, in some hallway at the other end of the building, that might be completely going against what can help them thrive. You know your child the best. So you research, you trust your gut.

Parent: If you're reading something, you're thinking, you know, they've put this in terms that sounds really positive, but, it just doesn't sound right for my child. You have to trust that because as much as I could saying it, I did second guess myself because we came to a district that we were told has this great school, is to create special services. This is where you want to be.

So I'm like, Am I going crazy? Am I sitting here like creating problems that maybe don't exist, Maybe my child, is it getting all these support services? Maybe it's all in my head that the social behavior maybe has regressed. It is in my head that, they come home and they just seem very frustrated with everything.

And then, like I said, when I reached out and Maureen said, no, this isn't all in your head. This is this is a problem. New Jersey has this problem. This is inclusion is not what it should be here.

Maureen: Can I ask one maybe a final question? Her child is included for now a good part of the school day.

I just want to know from you, how you feel about that. I know that it's a process and your child just kind of started. But how do you feel that you kind of got what you felt was right for your child?

Parent:  I feel that this is what will benefit them the most, working with the people who make the decisions from the district side, they have not made me feel comfortable with this kind of decision that we want.

This is what we want for our child. We want them to be in an integrated classroom. So I'm confident that's what they need, right? I'm very confident in that. What I worry about the most and what makes me uncomfortable about it, is that I don't know that the school side is prepared to be as supportive as they need to be for them, because it almost feels like they're unprepared because integration is not a priority. So they don't know what to do with it.

Parent: I just feel like the way they worry about everything when we fight for this inclusion is just feels very unprepared and just very just like annoyed, like some kind of distraction. And I am confident that's what he needs. But I need, like I said, for my other state, I need to feel that they're confident in that as well.

Maureen: I think that's I think that's a really important point, is that there's a trust factor. And I think what happened in the beginning, the trust totally broke down. And I believe that eventually the trust will be rebuilt when and if the school district does what they need to do, her family do what they need to do.

I think that it eventually that trust will be rebuilt like she had in her old state. So I mean, I think one of the takeaways for special ed directors, child study people is there is that element of trust. And once that trust is kind of broken and it takes a while for everybody to get back on the same page at the same table.

Arthur: Thank you both so much for this much-needed conversation. And Maureen, as you mentioned, through sharing experiences like this, I think there is power in that. And, hearing what other people went through and connecting everyone together to share their experiences, I think that is going to be very helpful and very beneficial to many families, you know, who are working with you all there, IncludingNJ.

So thank you both for this conversation. And, I think this will be very helpful to many families who are, you know, working toward an inclusive education setting in their school districts for their children. So thank you both. And I hope you have a great thank you.

Maureen: Thank you Arthur for having us. We appreciate it.

Arthur: Yes, you're welcome.

We thank you for listening to this episode of the Inclusion Think Tank podcast. This podcast is brought to you by New Jersey Coalition for Inclusive Education, NJCIE. Be sure to subscribe on YouTube, Spotify or Apple Podcasts. And don't forget to follow us on social media @NJCIE. Until next time.