Ep. 120: Why Parents Choose – Donna Berman

Jennifer Wagner: Thank you for joining us for this episode of EdChoice Chats. I’m the VP of communications here at EdChoice, Jennifer Wagner, and I am joined today by Donna Berman, a Florida mom who has an amazing story to tell about her son Brandon and their experiences with Florida’s school choice programs and specifically with their ESA program.

So, Donna, thank you so much for joining us today.

Donna Berman: Thank you for having me.

Jennifer Wagner: Well, I want to start at the very beginning. You know, the very beginning of Brandon’s life and sort of when you knew that he was a different kind of kiddo who maybe needed some different kind of attention.

Donna Berman: Brandon was… Just before he turned one we noticed he still wasn’t quite rolling over. He didn’t even try walking. Sitting up unaided was really hard. He was more like an amoeba. He would just flop. All the doctors were like, “Well, he’s just a lazy boy. His sister’s doing it for him.” And I’m like, “No, she’s only 18 months older. She wouldn’t be doing that. She doesn’t care for him. He’s just there stealing her toys.”

And you know, we decided to try some other things. He was about three and a half, and we heard about Child Find. We went through Child Find. Unfortunately it was the beginning, just before summer break and we started the testing on him, and they didn’t get back with us until probably September of that … When school started back together.

And they still weren’t quite sure what to do with him, because he had just started walking. He was doing a little bit of talking. They put him in a pre-k classroom where he actually did pretty well there. He still wasn’t quite potty trained. He didn’t have the dexterity to pull his pants down, but he eventually grasped onto that.

He coasted through. They put him in a regular K class, which luckily the peers in the class were peers that would help him through. Otherwise I don’t think he could have made it through K class without some assistance.

First grade was horrible. Horrible. They had to have another IEP meeting and decided that he needed behavior plans and everything, and by then he was six. Well, he started having seizures at the same time so we’re like, “Off to the specialist again.”

Well, they decided that now, not only did he have seizures, he has autism. I’m like, “Well, why was this missed earlier on?” Nothing changed as far as anything. He just now had seizures with it. OK, so now the school he was in didn’t want him. Didn’t want him because he now had to have medical care, had to be watched for seizures and things like that. So, they wanted to put him in a different classroom.

Well, that classroom didn’t work. So, then they called and wanted to put him in a different school altogether, into a different setting. All this naïve mom at the time saw was that this setting had a teacher that he had during summer school and the aide were going to be in the classroom, and there were only five to six children. Brandon would be No. 7 in this classroom.

Didn’t see anything more than that. Didn’t hear what the classroom was called or anything. He did great, did fantastic. Come the end of the school year, they were going to promote him up to the next grade, but they said he wasn’t academically there yet, because we worked on everything else. So, they opted to hold him back.

Me, not understanding, I could have said, “No, let’s get him out of this program back into a main classroom.” Well, the seizures continued. He was still in the same setting. The children in the setting were a little rough. Little did I know what that setting was called. They had a behaviorist in there. They had an aide in there. They had the teacher. It was more like Brandon was picking up behaviors as a kid rather than doing his own and learning to move forward with his education.

So, he got warehoused in that for a couple of grades. Then we heard about this thing called McKay. Didn’t know much about McKay. Thought about it. Thought, “Well, no. There’s nothing around here that would take our child,” because we looked at all the schools for McKay, and they didn’t want a child with medical issues. So, this is probably about third grade.

By third grade, he was taller than most kids in the classroom. He was probably the size of a fifth or sixth grader at that point, and he could walk. He was just getting on about a first grade level for education, and lo and behold we had a setback with seizures. He was having two to three seizures an hour. So, we had to find a way for him to be able to be in school and get an education and still maintain some kind of something medical for him as well.

The school did have a nurse, but she wasn’t there for just him is what I was told, and I’m like, goodness I don’t recall having being asked if I wanted a nurse just for him.

Jennifer Wagner: Right.

Donna Berman: But I get what you’re saying. So, we opted to Hospital Homebound him. With Hospital Homebound, I don’t know how it is in other states, but in my county in Florida you only get four hours a week of direct contact with a teacher.

Jennifer Wagner: Wow.

Donna Berman: Four hours. That’s it. How can any child trying to grasp an education, besides having all these seizures, communication issues, OT, things like that, get any kind of an education? Luckily, I knew that the first teacher that they sent us was a disaster. I asked her to leave the house. She was telling us that we were just bad parents, poor parents, and just didn’t do our job, and I’m just looking at her like, I think you need to leave. Really, I think you need to leave.

Jennifer Wagner: Yeah.

Donna Berman: OK. We found another teacher. The teacher and Brandon absolutely clicked. Absolutely clicked. He got that Brandon could memorize things with the help of music. So, he got through and got the concept of how things were done. When that teacher would leave, we’d finish the workbooks. So, the next time he’d come, we’d be done with that workbook. Bring me another one.

That went on until fourth grade. Fifth grade, we tried to integrate him back into the school system. Once again, this a tall fella. He was rather tall. I don’t think he made it the first semester without having the school’s specialist on Autism fly in from Connecticut and observe him, and she said he didn’t belong in this setting, that he was a sponge just absorbing all of the behaviors and mimicking them back. He needed to be in a different setting.

Well, the school didn’t have a setting that she was recommending. So, they thought in their infinite wisdom, because he was so tall, but yet never ever had been introduced to middle school, decided to drop him into middle school.

Donna Berman: No help. No transition. No nothing. So, now he’s expected to navigate a campus by himself, go through a lunch line by himself. He’s never done it. Never. First day of school, I’m called in a panic. If you don’t get here, we’re calling police. Why? I get to the school. I see the situation, and I see exactly where the failure was. The failure was in the cafeteria. Brandon’s always taught the rules are we don’t butt in line. Stand in line. Wait your turn. Stand in line, hands and feet to yourself. Wait your turn.

OK, well in middle school they have these little buddies, and of course they’re going to save somebody else’s place.

Donna Berman: Brandon didn’t understand. Needless to say, Brandon ended up being suspended.

Donna Berman: I said it’s not going to matter why you’re suspending him. He doesn’t understand. Your suspension is supposed to be related to what happened. You totally missed it. Me being his mom, and I know this, are you kidding me? I’m not going to hold him accountable. I’m going to take him home. We’re going to have a mini party, and we’re going to try to teach him the rules a different way.

Donna Berman: Because this is the way it is in middle school. No, Brandon, you didn’t do anything wrong. Perhaps next time let’s go find an adult. So, it continued like that. Then they decided before the next semester that he needed to go back to the setting he was in, and there was a different middle school that they wanted to put him at. Well, by then Brandon had had eating troubles, and he had a G tube.

He was stuck to his G tube. That school didn’t have a nurse. The school they wanted to put him in didn’t have a nurse. I, myself, am a pediatric emergency room nurse. So, I’m pretty much well versed in what my child needs and what schools have it and don’t have it due to the things that I’ve seen come through the emergency room.

My husband and I decided to ask to see what this classroom looked like and then talk to the behaviorist they had that was connected to these classrooms. And when I told the behaviorist, “How are you going to handle this G tube,” He looked at me. I saw the biggest whites of his eyes, and he said, “They ain’t never said he had a G tube.” I said, “I was pretty sure of that.”
He real quick got on the phone. He says, “Absolutely not will I take this child. No.”

Donna Berman: So, once again, we go back to, “Do we homebound him? Do we try middle school again with an aide? What do we do?” So, we had to homebound him again. My husband and I would switch off our days of working so we could work around Brandon’s schedule and our schedule. Through all of this, it’s not that we’re not capable parents. There’s our income. It’s being hit.

Donna Berman: What are you supposed to do? OK, we get there. We get through this year. We find a different teacher that was for his Hospital Homebound, really nice gentleman. He took care of Brandon for some time. Then we made it through the end of the year. Come the next year when it’s time to do, we were told by the IEP team that we could not Hospital Homebound him again, that he had to go to school.

Me, by this time, knew that was a lie. That if the doctors deemed him to be Hospital Homebound, he should be Hospital Homebound. In the meantime, we started looking around and found some new schools that had developed that were Autism friendly and were keeping an eye on them. We had an appointment to see them to look at what happened and everything how they would fit, but we went ahead and enrolled him into seventh grade.

Sixth grade, seventh grade, I forget. Right in there. By the time we had done it, had started school, we didn’t understand how McKay was. You had to register prior to, and there was a small waiting period, and then you could get into McKay. He had to go back into public school for a small amount of time until McKay was active.

So, in the meantime, he got in trouble again, because the rules. Nobody tried to help him find where something was, and he panicked. Well, when you back somebody into a corner, you’re not talking their language, you’re not quite in the right setting, you don’t know where you’re at, you’re fearful. It’s the fight or flight that kicked in. Of course now we’ve got charges being pressed.

Jennifer Wagner: Oh, my.

Donna Berman: We went to the IEP meeting. This is how this one played out. We went to the IEP meeting. The school’s attorney and I had a very good rapport. He understood what I was asking. We actually, he increased from four hours to six hours of home bound, because Brandon was starting to gain some knowledge. He says, “I don’t think that’s an unreasonable request. We’ll put that in.”

Well, in the middle of that IEP meeting, we’re getting ready to tidy things up. The school’s resource officer pops in and says, “We need to press charges, because he kicked somebody.” The attorney looked at her. He says, “Are you kidding me? Are you kidding me?”

Donna Berman: We did all of this. This should not be happening. This was on us. We didn’t give him what he needed. Nope. He’s going to go to court. He’s going to have criminal charges and all, and the attorney blew his stack.

Donna Berman: Well, now you’ve taken and gotten us out of the IDEA law, which gives you the IEP’s and put him into a criminal civil lawsuit, which has nothing to do with anything. That’s happening now more and more frequent than it really should.

Jennifer Wagner: Yeah, that’s unbelievable.

Donna Berman: So, we spent the rest of ’til we could open up and get into the McKay school. We went to the McKay school. Let me tell you what. McKay’s looks nice and shiny on your first look through, because you’re a desperate parent. You look at your contract. You try to figure it out and everything, but let me tell you, McKay is not all it’s cracked up to be. It’s a buyer beware.
You have no procedure safeguards like you do within the IDEA law for the IEP.

Jennifer Wagner: Mm-hmm (affirmative).

Donna Berman: You have no supports. You have no safeguards that you can go back to. Nothing. It’s a contract, sole agreement, that’s it.

Donna Berman: In other words, it was the most expensive babysitting position I have ever seen.

Donna Berman: It was horrible. Unfortunately, we had no choice but to do it the next year, because school didn’t want him and wouldn’t register him. OK, fine. So, we spent the next eighth grade at this horrific school not knowing what to do. We’d take him out on our days off and not hold him accountable for the crap going on, because the kid still had a love of reading, a love of learning. He wanted to do. He just did.

Donna Berman: Now I reached out by the school system. He was getting ready to go to high school in ninth grade. They said they had this new shiny program that he should to great in. It’s new. I said, “What is it called?” We don’t have a name for it. It’s just so new. Okay, well, I’ll go take a look at it. All summer long Brandon went and walked the campus so he would know where things were.

Donna Berman: Brandon has a service dog. Brandon would walk to campus with his service dog so he would know where it was at. Pretty much he knew the administration. The administration knew him. They gave him little tasks to do to buy into the community feeling. So, maybe this would help. I’m thinking, okay, this just might work. It just might work.

Donna Berman: Well, we go to ninth grade orientation. First thing we’re met with, you can’t bring that dog in here. I said, “Excuse me. He’s a service dog. He’s been here all summer long.”

Donna Berman: No, as a courtesy, we allowed you to do that. Mom’s biting her tongue going, “Well, as a courtesy I’m not calling the police on you.”

Donna Berman: But I won’t do that either. I’m like, “But he’s a medical device for Brandon for when he has a seizure.”

Donna Berman: Well, he can’t have it up there. We haven’t cleared the children for allergies and whatever. I’m thinking to myself, “No, you’re on a fishing expedition. That’s not how that’s done either.” Anyhow, he still wanted to do his orientation and be with the big kids. OK. I held the dog where the parents sit. He went up there.

I’m watching him. I see what’s happening. He’s having a seizure. The dog is about ready to take my arm off trying to get to him.

Jennifer Wagner: Of course.

Donna Berman: He wants to get over to the boy. He wants to do his job. Not once did administration stop or eyeball him. It was over a half hour before I could get to him. Then they told me I couldn’t go up in that area. I said, “I am. There’s nothing going to stop me. He’s having a seizure, and I need to go get to him.” It took a half hour for them to clear for me to get near him. That’s not giving me good feelings.

Jennifer Wagner: No.

Donna Berman: It’s just not. OK, in the meantime, there’s a scratching of a bill going through legislation. I’m catching wind of it. I’m starting to read things. Making some phone calls to the people’s names I see on it. We make it through ninth grade by the grace of God. Don’t know how.
The first week of school, let’s see … the first week of ninth grade in public school, first day he ends up leaving in an ambulance for a seizure.

Donna Berman: By Friday he had a broken nose.

Jennifer Wagner: Yeah, he was in the wrong school again. I mean, that’s-

Donna Berman: Exactly. So, the bill didn’t make it through or something for that year. Then tenth grade, we go back. Tell him things are going to get all better. Well, nevermind we had already home schooled him by the end of ninth grade. Tenth grade, I was ready to go home school again. They’re like, “No, no. Give us a chance. We’ll try.” Okay. We’ll try it once more.

Nope. There’s a bill going through. This time I’m really going to get heavy duty calling on people. I see it sneaking closer and closer and closer. I am so excited that June 25 it becomes a real bill. It’s got bipartisan. Now all I need is a signature.

Jennifer Wagner: Yep.

Donna Berman: I don’t have to put my child back in school. Yay. I’m so happy.

Donna Berman: Finally, it got signed into law. I was so excited. Ran straight to the school, withdrew my child. They wanted to know why. I just looked at them and laughed.

Donna Berman: I said, “Tell me three reasons why he should stay.”

Jennifer Wagner: And how long do you have, because I’ve got way more than three.

Donna Berman: Exactly. So, I called Patrick from Step Up, because he was kind of like the name that I had known from talking over that way. Is this real?

Donna Berman: Tell me this is real. He goes, “Yes.” And he told me the amounts that they could get and explained that his matrix was higher. He said, “Oh, well this is how we would do that.” Let me tell you what. I didn’t even care about the money in the account. The idea that I didn’t have to be punished. All finances were not on me anymore.

Donna Berman: I now had the ability to purchase him books, his educational needs.

Donna Berman: Nothing medical. His educational needs. Nothing that’s in the home that he would have used, but his educational needs. I discovered from sitting with him one day reading books back and forth. He’ll do a paragraph. I’ll do a paragraph. That maybe it was too much on the page. Maybe if I got him a Kindle Paper White, no bells, no whistles, no way to get on the Internet.

Donna Berman: Let’s see how it works. I increased the font on the book that he was reading, and I had mine, and I was reading it, and we were going back and forth. Next thing I know, after about the third go around, he told me to be quiet. He was reading the book on his own. Do you know what that was? That was a third grade level book, The Boxcar Children.

Donna Berman: I couldn’t believe it. Why couldn’t public school identify that?

Jennifer Wagner: Right. Right. I mean, that part of your story where you finally get to the … I will call it an epiphany, a breakthrough, because you were able to finally have the resources to dedicate to that, is why honestly all of us do what we do, because … I want to go back real quick to something you said early on in the story that you told. You called yourself a naïve mom. I’m going to push back on that really hard, because you are anything but.

Donna Berman: Well, I didn’t quite understand the differences. There is no, here’s this pamphlet. Learn what this is, because your child’s going here. There is no, what place is responsible to help you learn these things? Where’s your stopgap that a parent actually gets any kind of education? Now, currently on the IEP’s, there is a signature that you put your initials on that McKay is an option.

Donna Berman: That happened just before we pulled him out of public school, but there’s nothing else.

Jennifer Wagner: But I think, I mean, the word … I definitely understand why you chose that word, but I think a little later in your story, you talked about how one of his teachers basically said, “You don’t know what you’re doing. You don’t know what you’re talking about.” That is something that we encounter a lot from critics of school choice who say, “Oh, we the system, we the school, we the expert know better than parents.”

Donna Berman: Right.

Jennifer Wagner: Talk to me a little bit about, I mean, how does that feel to basically be told by someone who hasn’t grown up with, knowing your child, that suddenly you don’t know what you’re talking about?

Donna Berman: I was sitting at an IEP table, and I had one of Brandon’s teachers actually is a very dear friend. Let’s back up. I am not anti-school. I am very much not anti-public school. I am not anti-public-school teacher. I’m not. I am anti don’t put my kid in a box—

Donna Berman: And give him a window to see out. Don’t. Let him find a way to work. That’s what I’m anti. If you have the right puzzle pieces that click together, you get a complete picture.

Donna Berman: Now, me being his specialist, I am his specialist. I’m with him 24/7, 365. It’s very rare that I was not with him. Only when I was working, and even then, I had somebody else that was taking care of him that knew him just as well.

Donna Berman: Problem of it is, is with an IEP team, they list all these specialists, but yet they call us parent. No. We’re the parent specialists. Believe me. We’re the specialists of his medical. We’re the specialists of his personal. We’re the specialists of his life. We know where he’s been and where we’d like to see him go. Not at one time did anyone ask him or us what do we see him doing in five years?

Jennifer Wagner: Wow. I love that, by the way, parent specialist. I may, in fact, borrow that for use in some of our outreach, because I think that is what gets lost. The fact that you have to say that you’re not anti-public school or anti public-school teacher, none of us are. None of us are.

Donna Berman: No, we’re not. We’re not. I believe the teachers’ jobs are threatened, and I think it’s very sad if they say anything, that if their jobs are threatened, how are they going to react? That’s their livelihood, too.

Jennifer Wagner: Well, and I think your story especially is the one that I think a lot of parents encounter, which is all you were doing was trying to find the right fit for Brandon. That’s it.

Donna Berman: Yeah.

Jennifer Wagner: And you tried so many different avenues. In fact, even tried the McKay scholarship, which didn’t turn out to be the right fit, which is totally fine, and you finally were able to, with Gardiner, get the access to the services and resources that you needed, but there is a demonization or a some sort of sense that if you don’t … if you somehow pull away from the traditional system in any way, shape or form, that you are against that system or somehow saying that the students or teachers or families in that system are doing wrong, when all you’re trying to do is the right thing for your kid.

Donna Berman: Right. It’s kind of like one size fits all. I’m sorry. Have you looked at your neighbor? Have you looked at anybody anywhere lately? Go to Disney. There is no one size fits all. Not only that, it’s not just one size fits all. It’s one of those that I kind of have this slanted view of public school. It’s stuck in the cave man system. I had a space age kid.

Donna Berman: I really did. They’re stuck behind thinking with that mentality rather than opening up. My child did better. He could make a spreadsheet. I had no idea what a spreadsheet was. This kid is just … I believe that children are born naturally inquisitive, and if you just go ahead and link that into something else that’s learning, it works.

He loves to cook. Fine. With cooking, you can learn a whole lot of things. Weights and measurements, you definitely can do that. Math is huge. Science is huge. Reading, because you have to read the recipe.

Donna Berman: Shopping, there’s your math again. There’s lots of different things that you can do. You just do it differently. I also understand that in the public school system, it’s probably not possible to do it the way the classrooms are set up at this time. However, there is no reason for it not to take on that look.

Somebody can take a side of a classroom and set up a mini grocery store.

Jennifer Wagner: Absolutely.

Donna Berman: It doesn’t have to be real things.

Jennifer Wagner: Yeah. Yeah. There are many different ways. As you said, no two kids are alike. I have two kids, and they are opposite each other. I don’t try to educate them the same way, and you were in a similar situation. I do want to talk really quickly about your experience interacting legislatively. You said you caught wind of the early Gardiner ESA proposal, got involved. That didn’t go anywhere the first year, but talk about your experience and how you felt as an advocate, and how that experience went engaging with legislators.

Donna Berman: Actually, it was one of those that I knew that my child was not the only one that would benefit from something like this. There had to be many more. I could not be the only person in Florida that felt this way. I couldn’t. So, by speaking out and telling my story at the time, I hoped it impacted on my legislator. I met personally with my person. I don’t recall how she voted at the time now, but it was one of those that …

It was very humbling to be able to be part of it. You tell the story that, hey, I know you’ve heard me talk about this school before, but this needs to happen, because remember the school didn’t work for Brandon. This looks like it certainly can help him at home.

Jennifer Wagner: Yeah. Well, and to have that level of engagement, too, with your local representative makes it so much harder for them to not hear you. They have to hear your story.

Donna Berman: Right. People need to realize, when you vote, you have their ear, too. Talk to them. They’re human. They like to hear. They want to know why you want them to vote certain ways. They don’t just want to blindly go into things. They genuinely want to hear from you. They want to know what it is and how come so then they can move forward.

Jennifer Wagner: And they genuinely want to help their constituents and their state. I think people often times have this jaded view of politics, because they see cable news, people fighting all the time, or they see the depictions on fictional television shows, but yeah, I firmly believe that elected officials want to do right by their constituents. I think your story bears that out.

Donna Berman: Oh, yes, they do. I genuinely believe so. I do.

Jennifer Wagner: So, tell me really quickly, too. I know we’re about at the end of our time, but what message would you give to other parents? Maybe not in Florida, because obviously, I mean, you all are a leader in school choice programs and in options for kids, and that’s only growing year after year. To parents who might be states where they don’t have such robust programs, what message would you send to them about advocating for these kind of programs, especially the ESA program?

Donna Berman: Tell your story. Get to your legislator. They often have open coffees and meet and greets. Get to one. Talk to them. Send them an email. Call them. They really do want to hear your story. They need to know both sides. Talk to them.

Jennifer Wagner: That’s great advice. Is there anything else you would like to add? I obviously want our listeners to know that Brandon is no longer with us, but my goodness, how blessed he was to have an advocate like you and your husband and our partners at Step Up and everyone who saw the promise in him and made it so that he could have the opportunity that he needed to get the education that he deserved.

So, I would just open the floor to you for closing thoughts on everything.

Donna Berman: You know, Brandon was told he would never do anything. At his IEP meetings, I was asked often why did I want a reading goal? Why did I want this goal? Or why did I want that goal? I said, “Because it was meaningful to Brandon’s life.” Then they would reply back, “But he’s going to die.” And I would stare them straight in the face and go, “But one day I’ll die, too. That doesn’t mean any child should be discounted or denied an education that’s right for them.”

Step Up was great with helping us with that. Triple A, unfortunately I don’t know them, but as far as Gardiner working with a legislator to get Gardiner transformed into a bill and still hoping to shape it up. It’s been a wonderful adventure, and I would encourage anyone to speak to their legislators if they feel that they need to have an ESA in their state.

Each state should have an option. You shouldn’t have to be punished because you can’t have your child in a school. It’s not always your school’s responsibility. Well, it is according to the law, but at some point, it’s time for a parent to say, “Look, it’s just not working.” With an ESA, I’m not punished for taking my child. I’m given an escrow account with which to draw from for reimbursements, and it works.

Jennifer Wagner: Yeah, and you were able to find the options that worked for you. I just want to say thank you for sharing your story with us and everyone who is listening out there, and just thank you for being an advocate. I know it was hard. Obviously you were both working jobs to make ends meet and making your schedule work around Brandon’s schedule. I think far too often in the political debate, we lose sight of stories like yours of parents who would do literally anything to make sure that their kids get the options that they deserve.

So, Donna, I want to thank you for joining us today. Thank you for sharing Brandon’s story. Thank you for being an advocate for school choice and school options. Thank you for joining us.

Donna Berman: Thank you.

Jennifer Wagner: Thanks for joining us for another episode of EdChoice Chats. We were joined today by Donna Bermin, a Florida mom with an amazing story of advocacy for their ESA program. I’m Jennifer Wagner, our VP of communications, and we’ll see you again next time.

Ep. 120: Why Parents Choose – Donna Berman

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