Using A Special Needs Parent Advocate During Your Divorce, Or Anytime

Welcome to another episode of the exEXPERTS’ Divorce etc… podcast, where we give you all kinds of information and tips on everything divorce. Why? We’ve lived it, so we get it. We’re Jessica and T.H. Keep in mind you can get exEXPERTS in your inbox by signing up for our newsletter. Get the latest news and find out all about our events before anyone else, plus, access to special discounts and prices. Head to to subscribe.

Jessica: Welcome, everybody to the Divorce etc… podcast with us, T.H. and Jessica, exEXPERTS, and we are thrilled to have Rebecca Stern here from Pearl Mediation. Don’t let mediation fool you, because she is a parent advocate. We’re going to talk about how important that is, regardless of your marital status. But when you bring divorce or some kind of contentious situation between parents into play, a parent advocate can really help you navigate what’s best for your child. Welcome to our show today.

Rebecca: Hi, it’s great to talk with you ladies.

Jessica: We feel this is such an important topic. Thank you so much for taking the time.

Rebecca: My pleasure. It is an important topic.

T.H.: Rebecca and I have our own personal stories about our boys. We’re going to blend that in here. But let’s start with two things. What qualifies as a child with special needs? And what does a parent advocate do? Those are loaded.

Jessica: Right, seriously.

Rebecca: It covers a broad range, right? I mean, a special need can be a child with a mild case of ADHD, who’s a little bit distractible, to a child with a profound disability. There’s such a range. But for the most part, when we’re talking about a special education advocate, we’re talking about a child that has either a 504, or an IEP in school, and those needs then translate to them needing certain accommodations at home as well. That’s how I would define it.

Jessica: Well, I guess first answer what is a parent advocate?

Rebecca: Sure. A parent advocate generally is someone who might come into the school system with you in something like an IEP meeting and advocate on behalf of your child, making sure that the Child Study Team in your district is providing whatever accommodations they need, either in the classroom or maybe they need an out of district placement to go to another specialized school, something like that. I help parents get services in that realm. Then where it comes into play in divorce is if you’re mediating your divorce, you’re going to be coming up with your marital settlement agreement, of course, negotiating that, but if you have a child with special needs, you really also should be making a parenting plan that’s a special needs parenting plan. Think of it like that IEP in school, translating that to kind of an IEP at home, for your co-parent, for any caregiver that’s going to be interacting with your child, so that they’re capable and they know exactly what your child needs, whether it’s something small or something tremendous so that you make sure that your child is always getting what they need throughout their day, no matter who they’re with.

T.H.: Can you give examples of accommodations? Because I feel like–so I have two children with dyslexia and dysgraphia, but one of my children, in addition to that, also has severe anxiety. It’s not test anxiety, and it’s not being uncomfortable going to school. It’s literally like hard wiring, and I’m not diminishing any kind of anxiety at all, but there is a range. I feel like today, a lot of parents, at least in my neighborhood, are trying to get their kids classified for accommodations. Can you give examples of what legitimately qualifies kids for accommodations, and what examples of accommodations are?

Jessica: But let’s be clear because we’re not talking about what qualifies kids for accommodations for at school, right? We’re talking about how it would factor into the needs for your parenting plan with regards to divorce, right?

T.H.: It’s both. I think it’s both because they represent you. I needed a parent advocate because my ex didn’t see what I saw as needs for my child. The parent advocate literally came with me to the school meetings to validate the things that I had been saying, so you need that person in school as well as with your parenting plan. Let’s start with in school first.

Rebecca: Yeah, absolutely. I mean, you know from having been through it T.H. that when you go into school, and you have your child evaluated to see if they’re eligible for special services, there are these 14 categories. If the school determines, based on the evaluation reports, that your child meets one of those 14 categories, they give them an IEP. Then you have meetings to talk about what specific things are going to go into that IEP. Maybe they’re sitting closer to a teacher, maybe they’re getting notes for them, maybe there’s some sort of device that’s helping them, all different kinds of things. When we’re talking about at home, it’s the same thing. Except instead of using some set criteria, just like In any other negotiation, it’s whatever you agree it is. Coming to that agreement, like you said, you can really use the help of professionals. Because often, you may be arguing with your ex, and you telling them what your child needs might not get you very far. But if you bring in an advocate, a clinical professional, and that professional is talking to your former spouse, they’re going to hear it differently. When you keep everything focused on the child before you get to the rest of your negotiations, I mean, most parents want to be good parents, and they want to do right by their kids. If they’re hearing from a professional, “Look, I’ve seen this a lot before, this can help with that particular condition, and this is why it should be in here,” they’re going to be more open to it. You mentioned your child’s anxiety, just to use that as an example. Sometimes there are concrete things that we want to have in that home agreement like maybe they take medication, maybe they go to a therapist, once a week, so you want to make sure those things are being taken care of. But it can also be something a little bit less tangible. Maybe going back and forth as often isn’t a good thing, because maybe there’s anxiety with every transition. So maybe you want to reduce when you’re making those transitions because again, it’s not about us, it’s about our kids and what they really need. Maybe there’s some structure in the way that you’re parenting that works really well for them. Maybe they need warnings before something is coming up. Maybe they need a lot of very clear boundaries for certain things. It’s completely unique to your child. Whatever it is that’s going to help keep them on track and keep things moving smoothly, those things need to be discussed. They’re sometimes forgotten because there’s so much going on in the divorce process thinking about all those things. But once you actually start implementing your parenting plan, keeping those things in place is what’s going to help things move forward in a positive way.

Jessica: When my son was not quite three, like around two and a half, we had him evaluated because he wasn’t talking. He was our first, so we didn’t really know. We were like, he’s a late talker. He was evaluated and had sensory issues, and I’m forgetting the other area. But what was it?

T.H.: Tactile?

Jessica: Well, tactile, isn’t that sensory? Is that different? Right, it was tactile and something verbal, obviously, because he wasn’t talking. He had an IEP in school probably until I think, fourth or fifth grade. The occupational therapist at his school was really great. We really loved her. We wanted the services to go on longer. He aged out, ultimately, but New York City did give him services. Even just the beginning of this conversation, I’m thinking, I mean, it never occurred to me to fold that, or anything having to do with his sensory issues, or his occupational therapy or anything, into what our custody agreement was going to look like. He had the services at school, but I feel it didn’t necessarily play into our divorce. What kind of guidance can you give people in terms of, at what point or for what types of things should this really be something to be discussed as part of your divorce agreement? I may have just been remiss that we didn’t know to work that into our divorce agreement, but it also may have been his IEP and for the things that they were for weren’t necessarily things that would have been negatively affected by the divorce. So how does someone know?

T.H.: But also, let me just say one thing, you and your ex communicated well together. I mean, you were you are a team about your kid, so maybe it wasn’t going to be as big of an issue. And Rebecca, I’m curious for your opinion, for me, there was very poor communication and actually finger-pointing and blaming me for certain things that my kids are just wired for. But you and your ex were definitely on a united front.

Jessica: For sure.

Rebecca: That’s exactly what I was going to say is just like every child is unique, every situation is unique between the couple that’s divorcing or separating. The better the communication, the less you’re going to need to be specific about things, just like the rest of your agreement. One marital settlement agreement might be a few pages long because they know they’re just going to be able to communicate and figure out the rest. One might be 40 pages long because you need a lot of specific details in there so you don’t keep coming back around and having a discussion about it. It really depends on how severe is the disability and how good is your communication. The more serious everything is, the better it is to put these things in there. Just an example from my own life, my older son went to a wilderness program and a therapeutic boarding school, and as you can imagine, big decisions and big expenses. Those things really needed to be worked out, or else it was going to go on forever and impact everything. Those big expenses, for example, when you’re coming up with your support situation, and when you’re figuring out how we are going to share these expenses, you want to try to anticipate as much as you can, especially if there isn’t good communication, to what you might need in there. So if you think, maybe you have a young child now, but they have some significant issues, and maybe they are going to need some sort of private program going forward or a private therapy, you want to anticipate that in how you’re sharing expenses. Maybe say if something is over a certain amount, this is how we’re going to handle it. We’re not going to handle it the same way as the basketball uniform, because they’re very different things, and how are you going to negotiate if you do have a disagreement about what services are needed. Very often, I help people put into their agreement, if we have a debate about what the child needs, like you said, sometimes one parent might be in a little bit of denial, and somebody else might be more involved with it so they’re not, what happens if you get into an argument and you have 50/50 in terms of every kind of custody, including decision making, how do you resolve that? A good answer sometimes is if your child has been working with a certain clinician, let’s name that person. Let’s say if you guys get into an argument, we’re going to go to Dr. So and So, or a professional of mutual consent, and let them make a recommendation, and we agree we’re going to abide by that recommendation. That stops you from going back to mediation or going to court because you’ve put in there how you’re going to answer that question.

Jessica: I love that that’s a great idea.

T.H.: It is a really great idea. I would say when I separated from my husband, I mean, this my son was four. His issues really didn’t amplify until he was around 10. We never anticipated this, because I knew nothing about anxiety. Everybody get in the car, we’re going. I’m not going, I’m not going, I’m not going. Get in the car, or you’re not going. He’s wired differently. He speaks a different language. I understand what you’re talking about Rebecca, because my son also went to wilderness and therapeutic boarding school, and those things honestly saved his life. But those were very difficult triggers that you and I, and maybe your ex, my ex, kind of let me do it and be the “bad guy”. But I knew in my gut there were no other options here. This is what had to happen. But I love the idea of leaving it open that if an expense comes up that exceeds normal expenses or considered normal expenses for your child at that stage, then it’s 50/50. Because I’ve had people call me who’ve had to send their kids to wilderness, and they’re going to drain their child’s college savings. Because if you’re ever in a position like Rebecca and I have been in, your kid might not make it to college if you don’t address the issues that are on hand today at 11 years old, as opposed to saving for 18 and hoping that that’s all going to work out magically. So really, it’s hard to name it. Because if you separated at a time when they’re young, and you don’t even know it’s coming, when it comes, you don’t even know what it’s called. But I will say that our advocate, we had a local advocate, and then we had someone who actually helped us place him, saved so much emotional heartache for me and validated my decisions, or taught me a new perspective. I on the other side trusted that person. I wasn’t going to listen to my ex, just like he wasn’t listening to me, but this person put us on a path to actually work together, which is a miracle, for our son. And so I just have to give kudos to you for having gone through this and now also being a parent advocate for others. I’m a very informal one. You call me, I tell you my story, and I let you know you’re not alone, but I’m not you who actually helps guide them along the way and having someone hold their hand. These are very difficult decisions. Anyway, a parent advocate plays two roles, so in the actual divorce and parenting agreement, and also having a presence in the school representing basically the child. Then what happens, god forbid, if you have to go to court?

Rebecca: I would say the same thing as with any other issue, you want to have documentation. That evaluation that you got for school that helps you get your child the accommodations in the first place, that same report is going to help you when you go to court, because again, rather than listening to either of the two parties, the judge is really going to want to hear it from a professional. If you have a neuropsychologist that wrote a 10-page report that describes in detail what kind of school environment your child needs, what kind of home environment they need, what their triggers are, what sorts of medication or counseling or whatever it may be is going to help them, and the court can rely on that report, that’s going to be best. You always want to put the best interest of your child first. That’s what the courts going to do. And as a good parent, that’s what you want to do. So when you’re relying on that specialized information, that’s where you’re headed. It’s when you don’t have that support, emotions take over. Like all the pieces, when do we make the worst decisions? – When we’re highly emotional. We want to turn all of this into homework and tackle it calmly. The more information that we have, the better we’re able to do that.

T.H.: All of these things cost a lot of money. What are schools required to give you that doesn’t cost money? Like, what efforts can be put into place to get your child classified, have them evaluated, all of these things? I know on my end, but I want to hear from you. Can you advocate for yourself and your child before you have to dig into your wallet?

Jessica: Wait, I think that also we need to know whether or not that’s state-specific. Because the laws and what they’ll cover in New Jersey may totally be different in New York. My kid was given free services, free occupational therapy, free speech therapy, and the IEP for X number of years, which was amazing, and I didn’t have to pay a dime. But I think that that question has to be answered.

Rebecca: It is a great question. There are things that are specific state to state, but one thing that every child is entitled to, they call it a FAPE. It stands for a Free Appropriate Public Education. I’m sure you guys are familiar with this by now. Really, your child has to get a level playing field compared to the kids that are sitting next to them, whatever that means. If the school needs to provide something to make sure that they’re getting that appropriate education, and they have the resources to do it, great. If they don’t have the resources for it, they still have to provide it. That might mean them covering the cost of another school that has those resources, another program, or another provider. They have to do that so long as what you’re talking about is something that is a real thing that clearly needs a certain support. It all ties together because in order to get reimbursement from your school district for something if it’s something very big, like an out-of-district placement, you might need to hire an advocate or an education attorney to go fight for that. They might have to file a petition for due process to make sure you’re getting that from your district, and if you’re in the middle of a divorce, who is paying the education attorney? It all comes back around to making sure that you know what you’re entitled to, you know how to get it, and you know how you’re going to accomplish it. Because the financial piece in a divorce is huge. So when you’re talking about a special needs child, and how are we going to finance this, you may need to be creating a special needs trust. You may need to become familiar with what an ABLE account is, instead of a 529. And you want to go to a trust and estates attorney, a special needs financial planner, people who know specifically in that area what you might need to put in your agreement, and what you might need to do to preserve things financially and help you save for the future if you’re anticipating that you might need some of these larger supports.

Jessica: So Rebecca, for someone in a situation similar to T.H.’s, likely a lot of people would get divorced and your kids are very, very young, and for whatever reason, one reason or another, they haven’t exhibited certain signs of special needs or certain signs of any conditions that would require services. Now you’ve gotten divorced, and your agreements are all worked out, and seven years later, all of a sudden things start popping up. You and your ex are not agreeing on the steps to take, and you as one of the parents feel I really do need to have my kid analyzed. I don’t remember what the phrase is. And so that’s going to cost $2,000. At what point can they, I don’t want to say make their other ex pay for part of those bills, is that part of bringing a parent advocate into the equation of justifying why the other parent now, yes, retroactively is going to have to pay X, Y, or Z to go towards the services, because the assessment of your child shows that they needed it. I think that would be a very complex situation that probably a lot of people are in. Like, I’ve just paid out $5,000 for stuff, and my ex is saying no, and now they’re getting all of this and I’m on my own.

T.H.: I’m going to add another layer of complication to that. I had my son evaluated by the school, and what was fortunate is that his older sister went through the whole evaluation process for dyslexia and dysgraphia. I already knew that the school was going to do all of this stuff for me. I didn’t know the anxiety piece, but another layer is–and I just forgot it.

Jessica: It was something about if you pay out of pocket on your own to get an assessment, because your ex doesn’t necessarily think that they need it, and then the assessment shows yes, your child would benefit from all of these surveys. Now, who’s covering the bill for the original assessment and those costs?

T.H.: Okay, thank you. My son was evaluated, and they said he’s in a gray area so we’re not giving him the classification. Because my other daughter had someone, I will say this is a good time to ask friends who they use in the area, I went to her and I had her help me get Jason a full separate evaluation that the school would accept.

So of course, everything was uncovered, because it was much more detailed. It was many days, and it was like three hours in a day–

Jessica: And you had to pay for that now.

T.H.: I had to pay for it. Not only are you paying for an advocate, I knew something wasn’t right, because I had a little glimmer of information. And gray area? Are you kidding me? He can’t even see. And the teacher doesn’t understand what’s going on. The first expense is getting another evaluation, if you don’t like what the school says, to then validate getting a parent advocate in. There are many cases around divorce where you don’t necessarily want to take other people’s advice, but I would say what worked out really well for me, and Rebecca, let me know what you think, asking other parents whose kids are pulled out, and you can just kind of see or your kids can tell you, like, Peter goes to a small reading class, talk to those parents. They will help you because they’re already helping their own kid. So definitely ask around just so that you have information. Okay, sorry, now you can answer the double complicated question.

Rebecca: And that’s exactly the path. It’s a good news, bad news thing, because, yes, you can always go back for another bite at the apple. Things change, right? If you have a support arrangement, say somebody’s paying alimony and something changes, someone loses their job, someone starts making double the amount of money they were last year, you’re going to come back and revise that agreement, because you’ve had a significant change in circumstances. It’s the same thing with your child. If something isn’t present or isn’t able to be recognized early on, and then something crops up, well, we might need to sit down and do things differently. You can amend your agreements. You can go back to mediation if you have to, whatever you need to do to make sure that what’s currently applying to the situation makes sense, given what’s going on with your kid right now. It’s the same thing with the school. What you said about the evaluation is so true. Sometimes it’s unfortunate, but you kind of get what you pay for, like everything else. When you get an evaluation done through a school district, sometimes they’re phenomenal. Sometimes there’s a professional working with the school who is fantastic, and their heart is in it and they have great experience. Sometimes not so much, and you’re better to shop around, especially if you need to convince the school – hey, you’re not seeing something, and I know it’s here. I’m not crazy. You go talk to a private clinician, who then does maybe a more extensive series of tests, gives you more information to go on, and what do you know – there is something. It just needed to be analyzed and picked apart in a different way. How you find the best private professionals is often word of mouth, and like you said, connecting with other parents. Every situation is different. Just because one person’s child got a certain service or had a certain experience doesn’t mean that’s going to be your experience. But you are always going to learn something when you’re talking to somebody like we’re all talking about all of this because all these things are isolating experiences. You think that nobody else is going through it, and oh, my god, this is horrible, and I’m all alone. If you actually talk to people that are going through the same thing, you feel so much better, because you realize you are not crazy at all. This is really hard shit. And here’s how I did it. Here’s how I did it. You come up with things together, and you find out what resources are really available to you, and which are the good ones.

Jessica: I mean, that’s literally exactly what our whole point of exEXPERTS is, is to make people understand there are a lot of other people who’ve been down the road that you’ve been down. Maybe some of the circumstances are a little different, but people understand where you come from and have that empathy. And so that’s the whole point of this. But my question is, would you recommend, and I know this is sort of a blanket statement, but just for anybody out there, because again, my kid had an IEP for these seemingly small issues when he was younger, it never occurred to me to have that folded into our divorce at all, would you say that for anyone out there whose kid has any kind of an IEP, consider that in terms of how that’s going to affect the divorce and make sure that there’s a parent advocate involved?

Rebecca: Absolutely. It’s the same way that you don’t necessarily want to rely just on your attorney if you have some complex financial issue. You should be talking to a CDFA. If there’s something complicated with taxes, you should be talking to a CPA, and specifically ones that have divorce experience. It’s the same thing when we’re talking about the stuff with your kids. Your divorce attorney, unless it’s somebody who happens to have that specialized experience, what do they know about your child’s dysgraphia, or anxiety, or dyslexia, whatever it is? They might have absolutely no idea. They might have misconceptions about how important it is or isn’t to have things go a certain way. When you talk to somebody who day after day sees kids with different kinds of challenges and knows what they need and how important it is, they can bring that into the conversation that it might otherwise be completely left out of.

Jessica: Yeah.

T.H.: I would say also we all would do anything for our kids, right? Don’t be afraid to ask questions. Don’t be afraid to push the school. Because, again, in my experience, they’re not going to say, we have all of these wonderful services for free for you, come and get what you like. You have to say, do you have speech? Do you have OT? My son’s struggling this way. Go to the principal, or go to the superintendent, or go to the director of Special Services for your town at the Board of Ed and say, “This is my child. I understand that my child is entitled to certain support. I want to know what you’re going to do for me. I pay taxes, and my kid is here.” So don’t be afraid. If you’re a little nervous about talking to other parents, go right to the Board of Ed, go right to the head of Special Services, and tell them I know my child is entitled to services. Trust me they’ve got a million of these conversations a day. But that’s their job to make sure that they have services to support your child. And if they don’t, Rebecca talked about–so the school was no longer able to support my son properly, so they were going to send him to a more specialized school in-state. We didn’t want that. That wasn’t the place we wanted our son to go to. We did actually hire an education attorney to negotiate on our behalf with the Board of Ed, which I will say was worth the money, and it wasn’t really that much money in the end. If you live in New Jersey, I’ve got someone for you. Because my son was able to go to another school out of state, he’s gone to two different schools, and he’s graduating from one now, they paid equivalent to what the school would have cost if he had gone to the specialized school in-state. That’s a lot of money, and not every school and not every town will do that. But your best opportunity is with an attorney, and I didn’t even get involved. I signed my name. Yes, go negotiate. My son’s bulk of his tuition for the last four years has been absorbed by our district. So don’t be afraid to ask questions. If you’re in New Jersey and you have questions about this stuff, maybe we’ll do an event about it and ask us anything, because Rebecca and I both have personal experiences. But go and ask your school. You are entitled to services for your child.

Rebecca: Absolutely. T.H., you are talking about going to the director of Special Services, going to your Board of Ed, that’s exactly right. And the parallel to divorce is if you don’t understand the process, then how do you know where to start, who to talk to, and how it’s all going to work? When you talk to a professional, that’s what you learn. When it comes to special needs, that’s the way it works. You talk to the director of your Child Study Team because that is who makes those decisions. The Child Study Team answers to your Board of Ed, so that’s how you know where you’re going to get those answers. But what’s shocking to most people who wind up in this situation is if you go talk to the Board of Ed, you’ll learn they normally don’t have any idea what your child’s story is, what the need is, why they need it, unless you go over there, and talk to them or unless someone’s advocating on your behalf.

T.H.: 100%

Rebecca: They have no idea. The attorneys who are representing the school districts often don’t even necessarily know very much about special needs. They just know whether or not a school is fulfilling their legal requirement to provide something. Again, the more information you get from experts and the more you’re able to be assertive about what you know your child needs, the further you’re going to get. When you send your child to, let’s say, a private out-of-district school of some sort, and the school hasn’t recommended it, and you make the independent decision to do it anyway, because you know it’s right, and you know how important it is, if you get that special education attorney, you can then go back around and ask the school to reimburse you now that your child is there, in whole or in part, and show why they needed it.

Jessica: Yeah. You know, as someone who doesn’t have the same personal experiences as you guys, I just want to say for anybody out there listening, one of the things that I admire most overall about T.H., but in particular, in this situation with her son was the fact that she didn’t try to hide it. She wasn’t embarrassed to talk about it with people. As painful and as difficult and as challenging as it may have been when she was going through it, she was open and talking about it with people and was proactive about asking for help. I have always looked at that situation for the last six years as the efforts that she made to put herself out there to make sure that she had a parent advocate, and to have people advocate for her to get him into the schools that he went to, any parents who are dealing with that kind of situation know that you’re saving your kid’s life. I really feel there are so many parents who find themselves in situations where their kids aren’t “perfect”, and they don’t want anybody to know. They’re ashamed, and they’re embarrassed, and they try to keep it under the radar and think that they can navigate it alone. It takes a village, people, in every aspect of raising a kid. And so watching T.H. going through that experience and being such the advocate and making sure she had people on her side, I just want to say if you question anything going on with your kids, talk about it to other people, and brainstorm about it, and get information, and get resources, because this is the kind of stuff that can really change the path of your kid’s life.

Rebecca: 100%.

T.H.: 100%. And it’ll change the path of your family too. I mean, as poor as the communication was in relationship with my ex, this was sink or swim. This was a dire situation. Fortunately, a lot of people are not in it. But unfortunately, the people who are in it are afraid it’s a reflection on them as a parent. I will just tell you, there’s no handbook for this crap. There’s nothing. You just go and get the information as best you can and talk to people. Like I said before, email me. Email me at We will do an event series around this. We will talk about it. Rebecca will join. We have our own personal experiences. You are not alone. There are a lot of situations though and thank you Jessica for that, but there are a lot of situations that are much milder, like my other daughter and like Jessica’s son. Just go and ask questions. I believe my child’s entitled to extended hours, taking this test in another classroom, using a recorder because they can’t take notes, and listening to an audio file instead of reading the book. Go in and ask what you are entitled to. Because like I said, they’re not serving it up. They’re not telling you about it. They’re just checking a box for the state. It’s like a big surprise when you find out what your child can get for free. And then otherwise, if you need help through your divorce, or you just need help with the school system, reach out to an advocate like Rebecca, because they are on your child’s side. If you’re on your child’s side, go. But keep an open mind too, because you’re not going to be right about everything. But you’re probably right about most of it.

Jessica: Well, on that note, I mean, there’s so much more to dig into. As T.H. said, we’re definitely going to have Rebecca back. There’s a lot that goes into divorce overall, but divorcing when you have special needs children can take on a whole other dimension of complications and challenges. We want to make sure that you’re getting all the information that you need. You can check out all of Rebecca’s information on her experts’ page on our website Thank you so much for joining us, and we will see you next time.

T.H.: Thank you, Rebecca.

Rebecca: Thank you.

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