Ep 10: How Regs Hurt Kids with Special Needs with Jennifer Burgess

July 25, 2017

In this episode of EdChoice Chats, Jennifer Burgess, a Georgia mother of three who’s fighting for educational options for her 4- and 5-year-old sons John and Joseph, joins EdChoice Marketing Coordinator Abby Hayes, also a mother, to discuss—from a parent’s perspective—the strengths and weaknesses of our current public education system when it comes to serving students with special needs. Click below to listen now.

Abby:  All right, so, before we dive in, can you just give us some history, tell us a little bit about your boys’ condition and what it means for them and their education?

Jennifer: Yeah, sure. John is our 5-year-old, Joseph is 4. When John was about 6 months old, we started noticing developmental delays. We went through all the testing and therapy and early intervention stuff and then found out when he was about 18 months, through genetic testing, that he had MECP2 duplication syndrome. Which is kind of a fancy name, which is basically the scientific name. Like Down syndrome has been named because somebody did all the research and made it famous. It’s just a rare genetic disorder that doesn’t have a common name yet.

The symptoms really manifest in global delays, cognitive, physical and speech, language, all that stuff. The fine motor. He gets all the therapies. Right around the time that we noticed—this is before we found out what was going on with John—we found out that I was pregnant with Joseph. John was only 8 months old at the time.

So, we hadn’t even done the genetic testing or anything like that, so we found that when Joseph was 1 year old that he has the same genetic disorder and very similar delays, global delays, nothing medical, other than some respiratory issues like ear infections. And it seemed like where, if there was a bug in the building they were going to get it, it just seemed that way. So they were on a lot of antibiotics as children and stuff like that, so we kept him home, and I’m a stay-at-home mom. I also have an older daughter, and we put her in a private Christian school when she was in kindergarten, and we just decided to keep the boys at home.

So yeah, that’s kind of our life. We do therapy all the time. We have therapists coming into our house, and we take them places. Unfortunately, there’s this spectrum like pretty much with any kind of disorder that you’re looking at. But with them they’re on more the mild end of the spectrum, and it doesn’t manifest in seizures and feeding tubes and things like that. They’re healthy little boys that get around and walk and play and just really love life.

Abby: That’s good. I know that you put them in a preschool this year, right? Was it a public preschool? Tell me a little bit about that.

Jennifer: We did. That was a huge deal! I remember our occupational therapist told us when John was three … We were in a program called “Babies Can’t Wait” which they age out of at the age of 3 because there is a public preschool here that they kind of transfer into because it’s state-funded just like their early intervention programs, so state-funded therapy is now you go to preschool. But she was private therapy, which we also did in addition to the state-funded therapy. We also have to have good insurance.

So I remember when John was 3, and our occupational therapist said, ‘Okay now we’re going to look at you aging out. You’re graduating from this early intervention program, now you can go to preschool.’ And I looked at her like, ‘You’re crazy. I’m not sending my child to school. Nobody can take care of him like we can.’ I mean you know I think that you feel like that as a mom anyway with typical children, but especially with kids that have special needs, you’re just like, I can’t imagine them going anywhere.

So we waited, and it wasn’t the time. But then that year that John could have gone to preschool, but we kept him at home. We chose to do private therapy. We just kept all the early interventions therapists on and used private insurance but I’ve realized since that year went on that he really would benefit from school, that he was ready for it intellectually. And he was ready to learn; he was wearing me out and Joseph, too. My mom would come over to the house, and we were like, ‘You’ve got to give these kids something to do.’

It was just time. They were ready, and by the time John was 4 years old, we decided that we would put him into the preschool, which really for us required a lot. It just was a lot of prayer and thought and planning, but ultimately, we felt like it was the right thing to do. So, we put him into what’s called “Leaps and Bounds,” which is the only preschool for kids with special needs, public or private, that’s even available in our area, so we put him in that. We saw how great it was for him we felt like Joseph was ready too, so about a month later we signed Joseph up, and they both went.

Abby: Okay. So how has that been? What’s the experience been like?

Jennifer: They loved it. They thought it was great. I will say that it was unfortunately … you know, there were a lot of positives, and there were some negatives, too. The positives were that the teachers were just amazing, just cared about the kids. They came and did a home visit before John even went. You know, they listen to us and anything that I said, ‘Here’s what we need.’ We chose not to put them on the bus and to take them to school. So when I was alone one of the teachers of the … would come out and meet me.

You know they just did extra things to make sure that our boys were cared for. I really appreciated that, and just the love that they have for the kids was really evident. It provided them with structure, which they really needed, but as you know being at home, we keep a schedule, but you know, it’s loose. They get to play a lot. We have snack time, lunch time. But as far as a real structure, they were craving that, with the potty training schedule and all that. That was great.

The negative things for us was that it was the oldest building. It’s the oldest school building in our county. All the middle school, the high schools, all the other elementary schools had gotten new buildings, and the old buildings from like you know the … I don’t know, like the ‘50s or something, maybe even older had all been torn down or repurposed. But this one building, which happens to be in the worst part of town—there’s a lot of crime; there’s a lot of drug activity right around there; all the housing projects are right over there—that’s where this little special needs preschool was.

So that was hard to take them, and also the … It just seemed to be kind of where they put all the programs that were on the back burner is the way that it felt. We had to go down into this area of town every day. Drop them off. Pick them up. And also, it just kind of felt like I guess because the school was an older school … it didn’t feel clean a lot of the time you know it just kind of felt like it’s hard to keep a school like that really up to par, so that was hard for us, too.

Abby: Sure, sure. So then, what happened to John and Joseph? I know that they’ve been sick sometimes since they’ve been in school? Is that correct?

Jennifer: Yeah, so the first semester they did great. That was a key concern because, like I mentioned earlier that their immune system is just compromised, so when we go into a new situation where kids have germs and things, you know that was a really huge issue for us. We knew that it was a risk taking him into the school. So, we were constantly praying for them, making sure that talking to the teachers about keeping them clean, and letting them know that they get sick easily.

The first semester they did great. The second semester, actually, things just really went downhill in January. Kids just started getting sick. We heard a lot of, ‘Oh, kids are out, or we had to send so-and-so home because he had a fever. Somebody threw up in the class.’ John and Joseph both got human metapneumovirus, which is just a typical respiratory virus, which is kind of more on the severe end if you’re looking. It can put you out for like a week. It’s kind of like the flu, but for them, it really put them into a critical state.

They both had to be flown down to the children’s hospital in Jacksonville, which is about an hour from where we live. Joseph went on a breathing tube. John, I think he got it about 24 hours after Joseph, so his wasn’t as bad.

Kind of to make a long story short, Joseph recovered really well from that; and John, after that whole thing, we sent John back to school. We just kind of thought, ‘Okay, well he’s better.’ It had been about two weeks, and he was showing lots of improvement. So we sent him back to school. About a week later, it may not have even been that long, he went into respiratory distress. We had to call the ambulance. He was hospitalized for another week, because he had contracted another bug that was going around.

Abby: Wow.

Jennifer: Yeah, and so John ended up with five different hospitalizations. It just seemed to really compromise his immune system. Even after, I think it was after the third hospitalization, we kind of said okay, ‘Let’s not send him back to school.’ And Joseph, we decided, because of what he had already been through, let’s not send him back to school either. We kept them out, and John ended up, without even going back to school, he ended up getting adenovirus, which is … I’ve learned all these new names for viruses now …

Abby: Sure.

Jennifer: Yeah, so he got adenovirus. We don’t even know where he got that from because at that point, after the third and fourth hospitalization, we were really keeping him away, kind of putting a little bubble around him. We were even cautious if we took him to the grocery store, and that was like the most high-risk place that we would go with him, but then that put him, John, in the hospital.

He ended up in the hospital for a little over a month, and they took him to a rehab place to get better with lots of therapy. And now they’re both back to baseline, even beyond. They’re doing amazing now, but that’s kind of put us into a position where over the last several months, we’ve really been seriously talking about where are we going to send them to school because we’re not sending them back to public schools. So that’s kind of where we’re at.

Abby: Sure. So have you been looking around at private school options so far?

Jennifer: Yeah, we have. We’re actually planning a move to Atlanta right now. Because, really there’s nothing here. We live in Brunswick, Georgia … it’s great. It’s really nice. My husband and I, Jimmy, we both grew up here. Our family is here, but there is really nothing here for our boys. So we found a couple of private schools up in Atlanta that we love. They’re actually schools for children with special needs, so we’re really excited about that. We’re kind of in the process of researching now and visiting the schools and figuring out what to do and where to go.

Abby: Sure. Can you tell me why you think one of those private schools would be a better option? What draws you to them?

Jennifer: Yeah, the intentionality. I mean, obviously a private school is created because there’s something lacking in the public school system. If every need was being met by the public schools, I think there wouldn’t be a need for private schools. That’s just the way I look at it.

Like I went and met with one of the private schools, the director. And just, they’re smaller, there’s less kids coming in and out. They’re only for kids with special needs. These people don’t make as much as they probably would in the public school system because it is a smaller, private school; it’s nonprofit. But just seeing the love they have for the kids, and the intentionality. There just seems to be more freedom. Like if we needed to say, ‘It’s cold and flu season. We really need to make sure our boys are protected.’ She said they’re willing to go over and beyond to do anything that they can to work with us to keep them safe.

That’s comforting to us, because we know that they can. They’re not following set regulations. And I used to teach first grade in the public school system, so I know what those teachers are facing. I mean, there’s so much pressure to produce certain results and follow certain standards. There’s not that pressure in the private school.

There’s another school that we visited. They actually have one online. It’s really, really expensive, but they do a great evaluation program. They follow every two weeks is updated with goals, and it really seems like they’re focused on results. Where in the public schools, we didn’t really see … it just kind of seemed like the goals and things, you know, it was kind of like checking off a box, but not the expectation for amazing things. We believe our boys are amazing. We believe the sky is the limit, that they’re going to do great things. Whatever challenge they’re presented with, they’re going to rise to the occasion and do it consistently across the board with both of them.

That expectation doesn’t seem to be there, that hope and that excitement to really get these kids to do great things and achieve great things and be their best. You know, it just kind of seems more like a place to go, and that spirit wasn’t really present in the public schools like we have seen when we visited these private schools. Especially this one that’s more one-on-one which we’re feeling more led to go to. Being one-on-one, they have their own little space and their own little room.

We were asking about precautions to keep them [safe]. You know we explained the hospitalizations and about the risk and their immune system. They told us that they had a kid there before, and one thing they did for one kid was put special filters on the air vents in their little (they call it a) cubby, but it’s like a small little room where all their stuff is. That just blew me away because I went, ‘Whoa! That’s incredible.”

I mean, it gave me such peace just knowing that our children could go to a place where they would actually be safe and cared for in that way. In addition to that, they have a suction machine that we use for John when he starts to get kind of gunky and just like get all his secretions out; and he does physical therapy with the chest. They were like, ‘Oh yeah, you’ll train us. We’ll do that.” We didn’t get that kind of a feeling at the [public] school. It’s like we had to jump through hoops, and, ‘I don’t even know if the nurse could do that. We’re not going to do that because it’s violating something, and so …”

Abby: That’s amazing.

Jennifer: After visiting that school, I’m like, wow, there is something out there for our kids, and so it’s just really exciting to experience that and so cool for our future and for them.

Abby: Sure, sure. So I know that you’ve looked into the special needs scholarship program in Georgia, have you been able to use that yet, where are you at on that?

Jennifer: The SB 10, I think is what they call it, and it’s great! It’s for kids that want to go to private school who have special needs and the public school is not working out for them. We’re currently in the process—because one of the stipulations is that you have to have attended one school year of public school in grades kindergarten or higher and both of our boys only attended preschool, but we thought they paid their dues in public school so what’s the difference in pre-k and kindergarten—so we’re in the process. There is a medical waiver process, so we’re kind of starting that and figuring out where to go and what to do. But that would be, from what we understand, that would be about anywhere from $6,000–$9,000.

Abby: Okay, so would that make it possible? Will you be able to do private school without the program? Or is that just going to make it a lot easier? Obviously, that’s a lot of money to be talking about.

Jennifer: Yeah, but these schools for kids with special needs, they’re just really expensive. So that, I mean, it’s going to kind of be, for us, it’s going to be peace knowing scholarships and grants and fundraising together, so that would be a huge part of it. If our boys don’t get that, you know, that’s just going to be that much more money that we have to raise or somehow come up with, and for both of them to go to these private schools is really, like I feel like I’m taking on a part-time job researching things because it’s a whole new world for me.

I heard the one that’s one-on-one is much more expensive. But you know we were talking about it with the admission’s person we met with, and she said that there was a parent at her school that said, ‘I never thought I would ask my family for money until I came to this school, and I realized this is what our boys need, this is what our kids need.” So I kind of feel the same way as well. I would never ask anybody for money now. But we’re looking at crowd fundraising as an option or having a fundraiser night, where we have like all of our community which is a lot of people here, so we’re trying to get creative with coming up with those funds for sure.

Abby: Yeah, yeah whatever it takes, yeah.

Jennifer: Exactly.

Abby: So you’re planning on fundraisers and doing what you can to get the education funded. What are the steps for the SB 10 program? What’s the next step there?

Jennifer: Yeah, so the next step is to … Well, I’m kind of trying to figure out how to … one of the recommendations we got from the admissions lady is to call the board of education here, and figure out a way to get the school system to agree with us that it would be best, kind of like a medical exemption …

Abby: Sure.

Jennifer: So saying that our boys don’t have to come to public school, so that we can document somehow that we’re homeschooling them. Once we do that, then we can get back to the SB 10 medical waiver, submit the medical waiver. And we have to get our last doctor. I’m still waiting on that; they get really busy, but I’ve sent an email to two different doctors asking them to write a letter explaining why it would be life-threatening for them to go back to public school. I mean putting them through the experience, it was just … I can’t even explain it. The ambulance comes. They’re turning blue.

Abby: Oh, I’m sure. That’s terrifying.

Jennifer: It’s been, it’s such a crazy season, so we have to get doctors to document why it’s life-threatening for them to go back to school, and why they need a more protected environment. Preventative type stuff. That’s where we’re at right now. We’re working with doctors and trying to get the medical exemption, and working the board of education.

Abby: Sure. Yeah, when you find out how all that falls out, shoot us an email and let us know.

Jennifer: Okay, yeah. I will, for sure.

Abby:  So is there anything else that you’d like to say just kind of wrap up your story, where you’re going? It sounds like you’re really hopeful and excited for your boys’ future. That’s really exciting to hear.

Jennifer: Yeah, we are. It is exciting. It’s exciting to know that there are options out there, and I feel like there’s a lot of hope. We really believe that God, that He always provides for his people. We’re just looking forward to seeing how that all comes to play and looking back and go, ‘We knew it was going to work out the whole time.”

Abby: Cool, cool. Well, let us know how it works out, and thanks so much for talking with us today.

Jennifer: Yeah, absolutely. Thank you, Abby.

Abby: Thanks for joining us for another episode of EdChoice Chats.