Becoming a parent advocate for Special Education | Meet Shubha and A: Finding a Way or Making One

Yeah, my name is Shubha Balabaer, and I live in New York City, I live in Brooklyn. I am the parent to a three and a half-year-old, and he’s autistic, and we knew that, we’ve known that for about a couple of years now, I think. 

 

How did you discover that something was different about your child? What was your experience like getting him a diagnosis?

 

Yeah, so our experience was pretty negative. He was in Early Intervention in New York, so that’s the program for younger kids and he was in just PT [physical therapy], ’cause he was crawling later and all of that sort of thing. So in New York, at least when you’re, once you’re in that you get periodic evaluations done, that’s just like part of how the program goes. And so we nobody, you know, our PT hadn’t noticed anything. 

 

We knew nothing about autism, so we didn’t notice anything, and it was also, he’s basically been a pandemic baby, so it was also in the middle of the pandemic, so it’s not as if we were comparing to other kids, like we didn’t, you know, there was like nobody around anyway. And I think also it’s hard to know like what was because of isolation, you know, this was in the peak of the pandemic as well. So we had a psych eval that was just like part of the, like part of the evaluations that we got done, for what, I think it was like six months after he had been in EI, and then that evaluator came over, we really didn’t like her at all, and at the end of her, you know, we were expecting like, okay he’s gonna need speech therapy, and then at the end she just, I vividly remember she said, “Oh yeah, he’s definitely autistic, so do you guys have any other plans this afternoon?” And I was just like, “Oh my god, get out of my house.” So yeah, so we didn’t know anything about it and then we immediately called his pediatrician who we really like, and luckily his pediatrician was really sort of helpful in, I don’t know, she didn’t really know anything about autism either, but she at least just helped us, like frame it mentally as just like, “Look someone just came over to your house for half an hour, like now you’ll at least get services, but, you know, here are some other resources to get further into your into the diagnosis.” 

 

And then we quickly started learning a lot about autism, from autistic led organizations. And so I think we really quickly were able to shift our perspective on like, you know, what we thought of autism was just like movies and TV shows, or whatever like “Rain Man” and stuff, and then like we really started to learn a lot more, a lot more about it, and in and just to address the hereditary, our son’s actually adopted, so none of it was hereditary, but what’s been interesting is since then learning, realizing like that my partner is probably autistic, that there’s like, my dad probably is like, it’s just interesting how even though our sons adopted, we’re like, “Oh wow, we, like, we have a lot of neurodivergence in our family, so. Yeah, so school’s been interesting. 

 

Your son is three and will be transitioning into school soon. Have you began your search? If so, please share your experience. 

 

So in New York we actually have, well we did have universal 3-K, and we do have universal 4-K. So for us, the transition, I don’t know if this is the same everywhere else, but the first transition that happens in New York is when you turn three. So you age out of Early Intervention, when you’re two, and then at three years old is like the first phase, and then five is a different phase. So for us it’s actually been pretty bad, in a way that maybe is different from a lot of other families. So we’re really affirming of him, and we really believe in inclusion, and what we’re experiencing in New York City, so we had the, the whatever it’s called the turning three evaluations, and the school placement that we were offered was a fully segregated school or a specialized school, but I used the term segregated , and it’s like a small class, so a class of six or eight kids. It was very behavioral based, which is a kind of therapy that we don’t agree with for ourselves, I know that every family has to make different decisions, but for us that is something that we have not wanted for our son. And it would’ve been the busing, even though it New York’s weird, like it’s the school isn’t that far away, but if he took the bus it would be 90 minutes to two hours each way.

 

Yeah, and they wouldn’t give us a part-time option, and we don’t need childcare, we don’t need full-time childcare. So we were like, is there any part-time option? And they were like, “No, he needs full-time.” And we have, we just like disagree with all of that. So we had found ourselves in a really frustrating position, because what we wanted was to be able to pick a school for him ourselves that was more like values aligned, but then what we needed to have was the teacher’s support, or the support on top of that. So we ended up having to go to mediation against the Department of Education here to fight for what we wanted, which was for him to have that special education support, but in a school of our choosing, and that’s not something that they were willing to give us. So we did win, I don’t know, you don’t win in mediation I guess, but we got, well, we all we wanted. And then we did find a school, if I could can I share a bit about like how amazing that was?

 

Okay, cool, yeah, so just, ’cause this might be helpful for other parents too, now, of course not everybody can do a school where you have to pay and we, we barely can but, you know, but we’re in a position where we can make it work. So we ended up interviewing like a whole bunch of different preschools in our area, and we had this experience with the preschool that we ended up choosing where you know how sometimes like you don’t know what you need until?

 

Like, yeah, so you know, we interviewed probably 10 different schools, and some of them were just general schools, and some of them specialized in autistic kids, and some of ’em specialize in disabled kids. And then we found this one school that just like one of the teachers that works there like posted about it on this LISTSERV that I’m on, and I’m like “Oh well if a teacher likes it, that’s a good sign ’cause you want a school where teachers are happy. So we ended up doing like a virtual tour and this was like the most amazing experience that we didn’t know we needed. 

 

So every time we told her, you know, our son has very high support needs, and we weren’t lying about it, you know, we wanted to be really honest, he’s non-speaking at the moment, like he doesn’t really understand spoken communication, he plays in very atypical ways that are unique to him. Like, so just very different and has like a lot of support needs compared to another three-year-old might. So we’re explaining this to the education director, and we had a, you know, our questions and we would be like, “Okay, Like if our kid does this, like how would you handle it?” And she, every question we asked, it almost became a joke, she would be like, “Well it depends on the kid, like it depends on your kid.” 

 

And I was like, “Oh.” And even I would ask, you know, if he has therapists are they push out therapists? So do you, does the kid come out with a therapist, or push in therapist, does the therapist go in with a kid? And then she was like, “Oh, well, it depends on the kid, because some kids really want to have push in, because they don’t wanna miss, you know, what’s going on, and other kids prefer push out because maybe they prefer to have the like focused attention.” 

 

And none of the other schools that I spoke to, even the ones that specialize in autistic kids, none of them did that, instead they would look at the diagnosis, so they’d be like, “Oh if your kid is autistic, here’s what we do for autistic kids.” But this person was like, “I don’t care what your kid’s diagnosis is, every kid is different, like how can I just make a decision on what we would do for your kid just knowing that he’s autistic, that doesn’t make any sense.” And so it was just really amazing, and so we did end up putting him in that school, so it’s three days a week, and we got a SEIT, which I think might just be a New York term, but it’s like a special education teacher for the ages three to five. That’s the thing we had to fight the city for, so we got that, and the school was like absolutely, just the most incredible school at, the they had me come in, they have like a week of training, it’s like a nature-based, Reggio, I don’t know, whatever all the buzzword like, you know, Montessori, Waldorf something, something, I don’t know. 

 

Anyway, like a very child-led school, and they have a week of training for the teachers before the preschool starts, and they had me come in, and do like a one-hour presentation, but the teachers didn’t want it to stop, so it ended up being like a two-hour presentation all about non-speaking, about we use an AAC device, so that our son is, there’s a term called Gestalt processor, and it’s a kind of language processing, so I taught everybody about that, and the teachers were so excited, and like the education director was like telling all the teachers like, “Okay, from now on we need to look for these things in other kids, because maybe the other kids also need an AAC device.” And then throughout the whole program like their version of inclusion is just was just like nothing I’ve ever seen before. So just so many examples, but like my, our, my son like can’t, if the overwhelming number of kids at the beginning or the end of a day is too much for him, right? So if like 20 kids are coming into a building all at once, there’s no way he’s going in, so they were like, “Yeah, okay, he could just start an hour later than everybody else, that’s fine.” Or an hour earlier, but we didn’t wanna get up that early, so we were like, “Okay an hour later sounds good.” 

 

Just and then they have like a big play area, and they were like basically my son never ended up going in the classroom, and no one ever made him, and no one ever felt, made him feel pressure, they played in the play area. And then they did a lot around teaching the other kids how to communicate with my son, instead of having my son learn how to communicate with everyone else. So all the, the training that I did with them on how to use AAC, they printed out all like screenshots of my son’s AAC device, and put it on the walls, and they said after a few months like all the kids were using the printouts to communicate as well. And yeah, they were teaching like the other kids how to use the AAC to communicate with my son. 

 

So their inclusion wasn’t just about like, how do we get my son to be like all the other kids? It was like how do we get everybody to respect and honor all of the different kids in the class? And so that was really amazing. 

 

Unfortunately we got to a point, where my son really loved it at the beginning, and for reasons that we do not know, oh also they let my partner go with my son to school, that was a huge thing. So we have no idea why, but then over time my son just decided he didn’t wanna go anymore, and my partner was in school with him, so we know it wasn’t like a trauma or anything, yeah, but it is like maybe my son might have PDA, which I think is the new term, but basically like it is a trend with him where he’ll really like something, and then not like it anymore. And then we just decided not to push it, and so where school is next to us, like this was the most dream school ever, so we might try it again. they’re gonna expand an elementary school, and I’m actually on, I joined their board ’cause I want their school to become an inclusive school, which we don’t have in New York City, we don’t have, we have one inclusive school in all of New York City, so that’s a a possibility. And then we’re really focused on self-directed learning as well, we think that self-directed learning is a really good fit for him, especially given that the school options for him are gonna be very limited and they’re all gonna be very behavioral based, and probably require like a really long commute, and probably be very like structured towards him, like learning in a typical way which he doesn’t.

 

What is Augmentative and Alternative Communication (AAC)?

 

Yeah, so AAC stands for, I think it’s augmentative and alternative communication, and the real definition is just any communication that’s not your mouth. So it could be unaided, which means using hand gestures, my son does a lot of hand pulling, so he pulls you to what he wants, he’ll bring you an object, all of that counts as AAC. And then aided AAC device could be low tech, so the picture boards, you know, pointing at a picture. My favorite description of a low-tech AAC for my son is that if we go for a walk, the way he tells us which way he wants to go is he gets out of his stroller, he turns his stroller in the direction he wants to go and then he sits back down.

 

And that’s actually a form of AAC ’cause he is using another device to communicate. But what I meant, and I shouldn’t have done it this way, but I meant high-tech AAC, so it’s an app that we have on an iPad, and his is based on pictures, ’cause he can’t spell like if he is older then he could spell words, his is based on pictures, and then he’s able to press pictures to say the words or sentences that he wants to say. Yeah, so that’s AAC. 

 

What was the mediation process like? What did you learn about advocacy?

 

Yeah, so we, in New York, we have a few good Facebook groups for parents of disabled kids, and those, I don’t know what I would’ve done if I didn’t have those groups, and, you know, maybe I don’t always agree with all of the families on there, but it’s a great resource for like, yeah what, how, what is this process? What is that process like? It’s so confusing. So that’s I think how I knew about every step of the process, like how to get the evaluations, when to get them, there’s it again, at least in New York, I don’t know if it’s this nuts everywhere else, but like there’s so much nuance to like there’s the rules, but then there’s like the unspoken stuff that is not part of the rules. So like there’s the thing that says like, “Oh just get an evaluation like a month before whatever.” 

 

The reality is, if you wanna get one of the good evaluators, you need to be on the wait list like six months in advance. And if you wait until that last minute, you’re not getting one of those evaluators. So yeah, so we did the evaluation. What was really hard, and what I think is hard, at least again in New York, is that there’s a person called an admin, I don’t know what the equivalent is in other places, but she’s sort of like our case manager in the DOE. So she gets the evaluations, and then there’s like how they’re supposed to do things which I’m told is like the parents have an equal voice and if there’s therapists, they have an equal voice. And that seems to really depend on your admin, so the situation we had, I didn’t find a single other family that had the same situation, and even like my kid’s therapist had never seen a situation like this before, where we were saying like, “We wanna have more of a general education experience,” and we were even saying we wanna pay for private school, like we’re like we’re not even asking you to pay for the private school. And it seems like most of the admins in New York City would say yes to that, and ours said no, and the other thing ours said no to, which was very, very weird was we ended up convincing her otherwise, but she said she could not include our son’s AAC device on his IEP, even though he had already been using the AAC device for a year. 

 

Yeah, but she said, but he didn’t have a formal evaluation, because in New York City there’s a shortage of evaluators. So we do have a speech therapist, but to get the formal evaluation, Early Intervention said it’s not possible. So then it was really weird ’cause the DOE is like, “We can’t put this AAC device on there ’cause you didn’t have a formal evaluation.” And I’m like, “But we couldn’t have a formal evaluation ’cause you didn’t have the resources for it.” So she was like, “We should put on picture cards.” And I’m like, “But he’s literally been using this for a year, why would you take it away?” And so for that we didn’t end up doing mediation, but I scheduled a meeting, I have no tips because it was the most frustrating meeting I ever had. I prepared in advance, I practiced, I said that, “You know, by doing this it would be like taking away a kid’s glasses because you said that you needed to do a different evaluation, and then just having them sit not able to see until you get the evaluation done.” 

 

None of that worked at all, and then, I don’t know, at somehow at the end of this really frustrating 45-minute conversation, she goes, “Oh, well I could put in privately owned AAC device.” And then I was like, “That’s literally what I’ve been saying for a month.” Like, that’s all I’ve been asking. So that was really frustrating, and then for mediation, she actually told us that we could do mediation, so she was good at telling us our rights, so she did say if we disagree, we can do mediation. What still is frustrating to me is that my understanding is her first thing should have been to try to work with us, and we had letters from his doctor and therapist, but she just immediately said, “No, you have to go to mediation.” And I’m not sure why, but so she told us that, so that was, that was nice of her. And then we, and then in New York City, there’s a couple of organizations that have free legal hotlines for special education. So I got to have like one-hour consultations with these folks to figure out like how am I crafting the argument in the right way that works for them. ‘Cause you know, a lot of what, as you probably know, a lot of what I said to you at the beginning about how like the distance like, and the values aren’t aligned, like they don’t care about that, like those aren’t good legal reasons. So I I had to figure out like, what is the right, like key, like, I don’t know, yeah, what is the argument that they care about?

 

Exactly, exactly, so we did that, but it was really, you know, I will say like for, I don’t know what it’s gonna look like after he’s five, because our experience was just so bad that it’s part of the thing that pushed us to self-directed learning, because we were exhausted.

What are some benefits or positive aspects of raising an autistic child?

I think the positives have been that, I don’t know how to say it, like my own personal growth and our relationship growth, me and my partner’s relationship growth, has just been like nothing that I would’ve expected in my life. Like, I was just talking to my partner yesterday about how like, I don’t know, like when our son was a baby or even before we adopted, and then I had all these ideas about parenting which of course everyone does, right? That’s the joke, you’re like, “When I have a kid I’m not gonna, blah blah.” But, you know, just all of these ideas around how we would parent or live our lives, and I’ve had to like unlearn what it means to raise a kid, and to prior, like, to really, really, like everyone says like, “Oh I want my kid to be happy,” right? Everyone says that, but like we’ve had to really, really think creatively about like, what does that actually mean? What does that mean for a disabled person to be happy and to have joy and to have freedom. 

 

And then it’s translated to how I think about myself now, and how I think about my partner as well, and just like what it means to sort of, I guess like question our expectations. Like there are just a lot of things where this is just how things are supposed to be, and then once, at least for us having an autistic kid, we question that for him. Like, wait, why? Why do things have to be that way? And then that’s translated to questioning it for ourselves too. It’s come up in my job a lot, where I’m like really able to question like, “Wait, why do we do things the way that we do things? Like, can we do things a different way?” 

 

It’s made me really rethink what inclusion means, not just like, oh, racial diversity, but like truly in this job, or in this party, or in this house, like, are we truly creating something where like everybody can show up, like really, really show up. And I was talking to another parent actually about like, even let’s, if my partner is autistic or if I’m neurodivergent, it’s also completely reshifted the way that maybe before or sometimes with kids you focus on the behavior, and then I think when you have an autistic kid you learn like, oh, the behavior isn’t the thing, right? Like there’s some trigger, there’s something else. And then applying that to us as adults has just been really amazing.

Any parting words?

I guess just like really try to enjoy and embrace your kid, and everything your kid has to teach you, because I think that they have a lot more to teach us than we have to teach them. So yeah, really, really enjoy that, and find the joy in, like the daily activities.

The Families and Stories Campaign is a series of interviews that feature parents of children with disabilities. With topics ranging from transition to adulthood for youth with disabilities to child development milestones, parents, caregivers, and children share their individual joys, fears, and struggles with caring for and being a young person with disabilities. 

We know the journey can feel isolating; our Families and Stories Project amplifies the voices of families like yours and builds a community among us. We are here to help.