VIVIANA HURTADO, HOST:
I'm Viviana Hurtado and this is TELL ME MORE from NPR News. Michel Martin is away. You know it had to happen. Summer break is over in some parts of the country, or almost over. Children are heading back to school.
This week, for our regular parenting segment, we wanted to talk to some moms who might have some additional challenges this fall. Students with special needs like autism, Down's Syndrome or ADHD learn differently than their classmates, but how do you find the right program for a special needs student, especially as public schools seem to get more crowded and have less money?
For answers, we've called on Debby Torres. She's the mom of a son who has autism. He's going into the first grade and she writes about their journey at the blog, Everybody's Boy. Eliana Tardio is a mom of two. Both her children have Down's Syndrome and she's a contributor to the Latina mom-focused website, mamiverse.com. And Daphne Felton-Green is a mother to a son who has ADHD.
Welcome, ladies. Welcome, moms.
DEBBY TORRES: Thank you.
ELIANA TARDIO: Thank you.
DAPHNE FELTON-GREEN: Thank you.
HURTADO: Debby, I wanted to start with you. Your son is going into the first grade. Tell us about some of the...
HURTADO: ...ups and downs he's already had.
TORRES: Oh, I would love to. Yes. It's unbelievable. It seems like he was just born yesterday, but - yes - he's going into the first grade this year, next week, and our experience with Peter has been pretty interesting. He was diagnosed with autism just before he was two, so we've had early intervention his whole life, speech therapy, occupational therapy, behavioral therapy. It's just not a week if we don't have six days of different people in our home.
When he turned three, we switched over to the public school system and he moved into a classroom that was for children with autism. It's called a self-contained classroom. And he spent about a semester in there before he was able to move into an inclusive pre-K classroom. When pre-K ended and we knew we were going to be going to the big leagues, going to kindergarten, and that he was going to be changing schools, really, we were faced with putting him into a general ed. classroom for kindergarten, or going back to that self-contained autism classroom.
And Peter is an extremely bright child. In many ways, he's actually above grade level, but socially and emotionally, he just was not ready for general kindergarten.
HURTADO: Was this transition a lot harder than you expected?
TORRES: It was. It was kind of sad. I felt like we were going backwards a little bit, after being included in a general ed. classroom for pre-K. It was pretty hard, but I knew it was the right thing for him.
HURTADO: Eliana, both your kids have Down's Syndrome. Your son is eight and your daughter is five. Can you tell us what your son's school experience was like?
TARDIO: Well, in my experience, I didn't know anything about the system when my son was born - when he was ready to start school because I am a migrant. So, of course, it was harder for me. He was sent directly to a life skills education classroom and it took me years to understand until we leave that he has all the abilities to be included.
So, now, he's going the most of the time included into a regular classroom. My daughter, too. They are doing great. They just started school two weeks ago and it has been a great adventure for us, because this is the first time that he's taking the regular school bus. He's doing everything by himself. It has been working very, very good.
HURTADO: Eliana, where did you migrate from?
TARDIO: From Bolivia. I'm from Bolivia, South America.
HURTADO: So you had cultural and language...
HURTADO: ...I guess, barriers to navigate. Can you tell us how your daughter's experience was different?
TARDIO: Yeah. Well, when it was with my son, I didn't have any experience and I didn't really understand anything about the system, so I just say, yes, when we went at the IEP meeting. It's the individual plan of education for children with special needs and this where you set the goals for your children so you know where they are going and what they are supposed to do, and what services they will be receiving during the school year.
So, with my son, I didn't have any information about anything. So I say, yes. That was the only thing that I say because, when you come from another country, sometimes, you feel, you know, that this is something new and this is something that doesn't happen in your country. So you are so grateful that you don't fight. Then you realize - I had the opportunity with my daughter when she was born with Down's Syndrome - I realized that these services, you know, are rights for them, so they have to have what they need to grow and to do their best.
So, with my daughter, I went to the IEP meeting, but I already knew what I wanted for her. Since the beginning, I asked, you know, for a special education classroom because, from three to five, they go to special education always. But I asked her to be included with high functioning children so she can start learning language, have all the opportunities of growing with typical children. That is the most important for them, you know, to learn from others.
HURTADO: Daphne, your son is 13 - he's the oldest of our group.
HURTADO: You put him in public school for kindergarten but now he's in private.
HURTADO: Why did you make that switch?
FELTON-GREEN: Well, actually, in fact, he started in private pre-K, junior K, and we realized that he was having problems keeping up with some of the children and some of the school-related tasks. But like Debbie and Eliana, we had gotten early intervention for our son because he was born early, so we knew early on that he had some physical gross motor delays, so we worked with the public program from birth to three and he sort of aged out and did OK, and we thought that he was OK to be in a mainstream classroom. But then when it came to school-related tasks, like handwriting, paying attention in pre-K, sitting still, those were very difficult for him. And he also has dysgraphia, which is a form of dyslexia, but it depend - it, the problem is with motor output with writing, so any handwriting tasks were difficult for him and that's what the children are basically learning in kindergarten and junior kindergarten and pre-K.
So what we decided is that he needed a smaller classroom than we had even been able to find for him. And we found a program that was suited for him. We looked at our local public school and it didn't seem to have the individual attention that we knew that he needed, along with the academic challenge that we knew he was capable of. So we were looking for something that had both. So we placed him in the private special education school, and then we approached our school system and tried to work with them to see if they could develop a program for him in our local public school. And we went to many IEP meetings, the Individual Education Plan Program meetings, and worked with our local school district to see if we could work something out, but they didn't have the programs that could meet his needs. So it took many years but ultimately they agreed with placing him in the non-public program.
HURTADO: Just listening to this story Daphne, is intimidating. You're a lawyer.
HURTADO: Do you think that helped you navigate...
FELTON-GREEN: I think it did.
HURTADO: ...school and policies and the administrators?
FELTON-GREEN: Yes. It's actually intimidating even for lawyers. This wasn't my area of law. It wasn't my area of expertise, and I did lots of research. One of the things that schools have on their side is a team of experts. But what we have on our side is our children and our knowledge of our children. And I think as parents, what's important is that we also arm ourselves with information. So a lot of what I did was learning about my son's different conditions and then also turning to people that I could trust to help to evaluate my son and to get an independent assessment of him so that when we met with the school team they had their experts explaining what they thought he needed and what would work for him in their setting, and then we had our experts that could say what he needed and what would work best for him. And so then it's a matter of negotiating over many, many, many meetings.
HURTADO: If you're just joining us, you're listening to TELL ME MORE from NPR News. I'm Viviana Hurtado. We're going back to school with three moms of students with special needs. I'm joined by Daphne Felton Green whose son has ADHD; Eliana Tardio, mom of two children with Down syndrome; and Debbie Torres, her son has autism.
Debbie, you supplement your son's schooling with speech and other therapy at home. Why they think this is important?
TORRES: Well, part of that is routine. He's always had these therapies at home and it's very important the relationship that he has built over the past four and a half years with a therapist he's worked with to continue that, and also because they are the things there are being addressed in schools are based around the academics. To me, it's really important that, you know, it's wonderful to have him be able to sit in a classroom and work on fine motor skills, but if I could have somebody help him to kind of gain the confidence and the troubleshooting skills that he needs to emotionally overcome what he has to overcome so that he can sit in the classroom and focus on that, then to me that's worth paying for out of pocket.
HURTADO: And that leads to my next question, which is how do you make the financial part of this work?
TORRES: It's really hard. It's really hard.
HURTADO: A fateful, oh, followed by nervous chuckles.
TORRES: Well, this is Debbie. And in our situation, we were very fortunate for several years to qualify for Social Security for Peter, which gave him access to Medicaid. And Medicaid in North Carolina covers many, many of the things that he needed. So we did not have that particular burden. There were other financial burdens that we had. At this point, he no longer qualifies for Medicaid. It's a story for another time, I guess. But we are really just trying to find ways to - I mean, this is an investment to us - just cutting wherever we can. My husband and I and our in-laws and our family has all pitched in just so that we can do whatever we can to keep speech therapy at home or one time a week of occupational therapy.
HURTADO: Daphne is in the studio with me and she's shaking her head up and down.
HURTADO: You've placed your son in private school. Was it a difficult decision to make, particularly because it costs more?
FELTON-GREEN: Yes. It was a difficult financial decision because a special education private school is significantly more expensive than a typical private school. So the cost for a kindergarten student was about equivalent to what people are paying for private colleges at this point. So it sort of hit us up front without having 12 or 15 years to save up for it, so it was difficult. We do not have any other sources of wealth other than our incomes, so what we had to do was and - what we were able to do, and fortunate that we could - is tap into our home and tap into equity that way. But we felt like it was an investment and we also were able to get private occupational therapy at the time through our health insurance but that wasn't an easy thing for the insurance company to do. We had a long, hard fight with them.
HURTADO: And that leads to my next question, which is because you felt there was no good option for your son in the public schools, you fought unsuccessfully, to get his tuition subsidized under the Disabilities Act. Did you ever hear the argument, though, that it's not the schools district's responsibility to fund private education? And what do you say to that?
FELTON-GREEN: Well, actually, nobody said that out loud. What they did say was that we have a program that will work for your son, because I think everyone agrees that school districts under the individuals with Disabilities Education Act have a responsibility to try to ensure that children who have learning disabilities are able to have better outcomes, and that's what Congress intended when they reauthorized this act in 2004. But what the school districts do is say that we have a program that will fit your child and basically they'll say that about many children. And what the problem is is that's not correct a lot of times. And so the burden is then on the parents to show how it doesn't fit and what the child needs, and that is a very hard, expensive and hard fought battle.
HURTADO: Eliana, you spoke about how when your son first went to school you were so grateful for anything that you were given, but at one point the light bulb went off. Can you tell us when you realized you needed to start asking for more help and opportunities for him?
TARDIO: Well, there's a point that you start, you know, realizing that people around don't really believe in your children, especially when they have had diagnosis like Down syndrome. It's like OK, they have Down syndrome, so there's nothing else to do, so let's send them to a life skills program because the only thing that they are going to be able to do, you know, is to do some cleaning to survive in the future, you know, and that's hard but that's true. So eventually you realize that your children, they have abilities. They are going to learn, you know, like anyone else but they are slower than other people, so that's what I saw in my son, you know. He has Down syndrome, he wasn't speaking at all because he was surrounded by other children with Down syndrome who didn't speak. So that was a time when I realized I need to do something for them and I need to start, you know, working on including them and giving them all the opportunities that they deserve and they need to grow.
HURTADO: Before we go, I want to ask each of you what advice you have for other parents who might have a student with special needs? Let's start with Debbie.
TORRES: Well, really, just remember that you are the expert on your child. It's intimidating to walk into one of these meetings or, you know, to really start advocating when you feel like they have all this education and information that you don't have. But you have the biggest piece of that. You are the expert. And also, you know, make sure you've got the right support system. You know, it's OK to bring somebody with you to these meetings. In fact, I've always done that, and whether it's a private therapist, a friend, your mother, whoever you have that you feel safe with, it's nice to have that support and it's sometimes it's just very disarming.
HURTADO: Daphne, is there anything that school administrators or teachers should keep in mind?
FELTON-GREEN: Listening to parents because parents have some knowledge about - obviously more knowledge than anyone else about - what the child needs. And I know that how a child acts in a classroom is different than they act at home. So I think it's important for parents to hear what the school has to say to make sure that they are being reasonable. When you connect with a teacher or an administrator on the idea that everybody is working for the child's good, if you can get to the point, hopefully you can move the discussion beyond limited resources, beyond particular programs but ultimately what is best for the child that we're talking about, which happens to be our child.
HURTADO: Eliana, and what about you? What advice do you give parents as far as being advocates for their kids?
TARDIO: Something that parents should always remember is that they are their children's best advocates. The first step is to educate yourself to be able to go to the IP meetings and know what is happening there. Then you have to believe in your child. And you have to work with your team also, you know, because sometimes for them it's like getting another child with Down syndrome or another child with autism or ADHD but they don't know the name of that child. So as a parent, you go there and you put a name to that child is the most important part of your life.
HURTADO: Eliana Tardio is a mom of two children with Down syndrome. She joined us from WGCU in Fort Myers, Florida. Debbie Torres is the mom of a son with autism. Her blog is "Everybody's Boy."" She was kind enough to join us from member station WUNC in Chapel Hill, North Carolina. And Daphne Felton Green is the mom of a son who has ADHD, and she was here with us in our studio in Washington, D.C.
Thank you all.
FELTON-GREEN: Thank you very much for having us in having this discussion.
TARDIO: Thank you.
TORRES: Thank you.
HURTADO: And that's our program for today. I'm Viviana Hurtado and you've been listening to TELL ME MORE from NPR News. Let's talk more tomorrow.
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