Parents of children with special needs face particular challenges when it comes to the education of their children. While federal law requires that all children with disabilities have available to them “free, appropriate public education,” many parents say it’s a fight to ensure their child’s particular needs are met. Others discover that programs and services — whether public, private, or non-profit — are often inadequate, costly or difficult to access. We explore the challenge of getting appropriate educational services for special needs kids.

See below for some of the stories parents shared with us.

Guests

  • Cherie Takemoto Senior research associate , New Editions; co-author, "Navigating the Special Education Maze"
  • Molly Whalen Director of Development and Communications, Ivymount School
  • Rich Weinfeld Director, Weinfeld Education Group; co-author, “School Success for Kids with Asperger’s Syndrome,” “Smart Kids with Learning Difficulties,” and "Helping Boys Succeed"

Parenting A Special Needs Child: Advice, Challenges And Reflections

When a young child is diagnosed with a disability or special needs, many new parents find themselves confronting a whirlwind of emotion, while adjusting to a steep learning curve of medical terms, acronyms and a maze of local institutions.

We asked listeners what it’s like to have a child with special needs and received dozens of responses through the Public Insight Network. These are excerpts from the inquiry, which illustrate the range of experiences and challenges faced by parents of children with special needs.

“For military families, the stress of the last decade plus of deployments into harm’s way has been hard enough. When you combine that with raising a child with special needs, the stress increases tenfold. The constant moves of military life create an even bigger burden as we have to recreate the support network for our children and our family every two or so years.” – Jeremy Hilton of Burke, Va.

“With all the challenges we have faced, we believe our son has made us see the world in a different, and in many ways, clearer and brighter way that we otherwise would. In our house, we celebrate successes that many families take for granted as a part of their children’s normal development — and therefore we have had much joy and celebrations that far outweigh the challenges we’ve endured.” – Jennifer Berzok of Bethesda, Md.

“The supports are very good, the need feels infinite.” – Bradford Lang, Rockville, Md.

“It is so hard. Help a mother when you can. Ask to volunteer at school or another organization that gives respite care.” – Katherine Walker, Woodbridge, Va.

“I cannot go back to work because nobody will take care of my child.” – Maeve O’Connor, Alexandra, Va.

One of the questions included, “Have you found the available services/support systems (government, non-profit, community) to be adequate?” Laced throughout the variety of responses, some words like “community,” “time” and “help” appeared more frequently than others.

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Parents Share Their Stories

Erin Croyle’s son, Arlo, is 2 years old. “We found out that he had Down syndrome just shortly after his birth, and it hit us like a ton of bricks.” When the family moved to Alexandria, Va., after her son’s birth, Croyle and her husband had trouble finding support services. But they eventually tapped into local services and support.

Liz Burdick’s son, 10-year-old Harry, was diagnosed with Autism at age 2. He is non-verbal, and until the age of 7, his parents believed he was cognitively impaired. That changed when Harry learned how to type. One of the first things he wrote to Burdick: “I want friends.”

Heather Alderman lives in Arlington, Va., and she is the mother of a 6-year-old with an Autism diagnosis. “You can’t know everything in the beginning,” Alderman explains. “A lot of what I learned was really 20/20.” She emphasizes the importance of parents working with each other, and sharing experiences of what works and what doesn’t.

For many parents, their child’s diagnosis triggered major changes in their careers. Unhappy with the education services offered in the public schools in College Park, Md., Heather Rivas decided to home school her 6-year-old son, who has been diagnosed with Autism. Like many parents, Rivas found herself navigating unfamiliar waters. “I don’t have a degree in teaching. But when it’s your child, you rise to the occasion, as I’m sure most mothers do.”

All parents seek to balance their impulses to protect their children, while encouraging independence. But parents of special needs kids confront an additional set of concerns. Stephanie Smith Lee is an education policy expert and the mother of Laura, an adult with Down syndrome. Laura completed the Mason LIFE program, a post-secondary program at for young adults with intellectual and developmental disabilities. Students have the opportunity to live independently with support and a focus on life skills, but also to be included in general curriculum classes. “It’s always hard as a parent to allow our kids the dignity of risk,” Lee explains. “But if we don’t they are not going to have the opportunity to be successful.”

What suggestions, resources or advice do you have for parents of special needs children? Tell us in the comments.

Transcript

  • 12:06:46

    MR. KOJO NNAMDIFrom WAMU 88.5 at American University in Washington, welcome to "The Kojo Nnamdi Show," connecting your neighborhood with the world. When a child is diagnosed with a disability, it opens up a world of unknowns for most parents, first, learning about what may be a complex medical diagnosis and then navigating the maze of services and programs that are available, including once a child enters school.

  • 12:07:21

    MR. KOJO NNAMDIFederal law requires public schools to make appropriate educational services available to every child. And parents often can find what their child needs. But many say what you get and whether it fits your child's needs depends on where you happen to live and how hard you fight. Parents often become experts and advocates in the process.

  • 12:07:43

    MR. KOJO NNAMDIJoining us to discuss this is Rich Weinfeld. Rich Weinfeld is director of Weinfeld Education Consulting Group, education consultants, advocates and service providers. He's the co-author of several books including "School Success for Kids with Asperger's Syndrome," "Smart Kids with Learning Difficulties," "The Special Needs Advocacy Resource Book" and "Helping Boys Succeed." Rich Weinfeld, thank you for joining us.

  • 12:08:08

    MR. RICH WEINFELDGlad to be here. Thank you.

  • 12:08:10

    NNAMDIAlso in studio with us is Molly Whalen. She is the mother of two children with autism. She is the director of development and communications with the Ivymount School in Rockville, Md. That's a nonprofit that provides educational programs and therapeutic services to special needs students. She's the former chair of the D.C. State Advisory Panel for Special Education. Molly Whalen, thank you for joining us.

  • 12:08:33

    MS. MOLLY WHALENThank you.

  • 12:08:34

    NNAMDIAlso in studio with us is Cherie Takemoto. She has been a disability advocate since her son Pete was born 25 years ago with complex health care needs. She is co-author of "Negotiating the Special Education Maze: A Guide for Parents and Teachers." She's a senior research associate with New Editions. That's a consulting firm. She's also an adjunct professor at George Mason University and formerly executive director of Virginia's Parent Training and Information Center for Families who have children with disabilities. Cherie Takemoto, thank you for joining us.

  • 12:09:09

    MS. CHERIE TAKEMOTOGlad to be here.

  • 12:09:10

    NNAMDIYou can join this conversation by calling us at 800-433-8850. Are you raising a special needs child? What education challenges have you and your child encountered? You can also send email to kojo@wamu.org, send us a tweet, @kojoshow, or simply go to our website, kojoshow.org. Join the conversation there.

  • 12:09:29

    NNAMDIWe reached out through a public insight network, asking parents of special needs children to share their experiences. We got an overwhelming response. You can find additional interviews and excerpts from some of those parents at our website, kojoshow.org. Molly, your son was diagnosed with autism in 2002, and many friends suggested you should move to get the services you needed. Can you talk about that?

  • 12:09:58

    WHALENOh, absolutely. My husband and I are Washingtonians, and my husband has actually got 30 years on the Metropolitan Police Department as a detective. And when we got the diagnosis, it was long before the big education reform of Michele Rhee, and started looking, and everybody said, oh, you should move to Montgomery County or, you know, get out. And, of course, we have -- we feel incredibly committed to the city.

  • 12:10:22

    WHALENThis is our hometown and, you know, and we wanted to at the same time make sure we were doing the right thing by him. And at that time, the early intervention services in D.C. were broken, to say the least, and there wasn't much guidance. And, you know, students can have -- children can have many different disabilities, and one of the difficulties with an autism diagnosis is that doesn't come until three or four, sometimes even older.

  • 12:10:50

    WHALENAnd so you're kind of completely derailed at that part. We've had to navigate so much of it ourselves and so -- and pay for so much out of pocket. When this is a federal support system, it should be -- it's federally mandated. It should be there. And one brief story is when we finally had someone say we're looking at different private schools and Catholic schools, and they say we just don't know if you can do it.

  • 12:11:16

    WHALENYou know, we're going to be able to support him, and say, go to your local D.C. school, and we did. And I knocked on a door and walked in, and I met very lovely people. But the principal's first words out of her mouth were: Do you have a lawyer? And, of course, I, you know, always call this my idiot parent moment. I said: Do I need one to enroll him in a public school?

  • 12:11:36

    NNAMDIYeah, right.

  • 12:11:36

    WHALENSo, of course, her -- but, you know, during that atmosphere of litigation and special education and things being so broken, so it was the first step that I realized I need to know a lot more.

  • 12:11:48

    NNAMDIA first step in a journey in which you essentially became obsessed with education.

  • 12:11:53

    WHALENAbsolutely. And I've, you know, I've mentioned that I grew up in the Fairfax County old school system, and it was one of the first gifted and talented kids in the 1970s. I knew nothing about special education, and I'm not an educator. I mean I had no knowledge of it so -- but I knew that my child was languishing and not getting the supports and not, you know, just kind of being in many ways kind of a bump in the corner, and we had to do something.

  • 12:12:21

    NNAMDICherie, we've heard variations of this from many parents. You became an advocate for your son, and one way you did that was by looking at those people who had navigated the school system before you did. Can you talk about that?

  • 12:12:34

    TAKEMOTOYes. My disability advocacy predated my parenthood, but everything changes when you're a parent of a child with disabilities and looking through the parent eyes. And as I looked at the landscape that kids with my son's disability would end up in a self-contained classroom, would end up because of my work with people with disabilities, would end up in places that looked a lot like institutions where they're only with people with disabilities. I wanted him to be included. And so I had to find who out there has included their children, how did that work and how do I get this for my son.

  • 12:13:14

    NNAMDIHow did you go about doing that?

  • 12:13:16

    TAKEMOTOWell, I figured out who in our county -- I live in Arlington County. So I figured out who in Arlington County had done this before. I gave the school notice, our neighborhood school notice when he was 2 going to preschool that we expected that he would be living his school -- elementary school career here at the elementary school that my daughter attended. And so I gave them notice that that things were going to have to be different because my son needed an opportunity to be successful.

  • 12:13:49

    NNAMDIRich, Congress in 1975 guaranteed all students the right to a free and appropriate education. What does that mean for special needs kids, and how much depends on the school and what the parents actually fight for?

  • 12:14:03

    WEINFELDI like to think of it that students with special needs have the same rights to a quality education as every other student does. But to do that, they have to overcome obstacles that are presented by their disability, and that requires formulating a very sometimes intricate and complete individual education plan, referred to as an IEP, or for some students, it's a Section 504 plan. But we have to make sure that we have the appropriate accommodations so that they can access rigorous instruction.

  • 12:14:39

    WEINFELDWe have to make sure that goals and objectives are in place that are working on improving their areas of weakness so that they can rise to the highest level of they're capable of. And we have to make sure that those accommodations and those goals and objectives lead to appropriate services. And those appropriate services are different for every child.

  • 12:15:00

    WEINFELDThey're -- whether they're service -- the services are available in your neighborhood school differs from neighborhood school to neighborhood school, whether there are services in a regional program within a school district or within a central program that's available in a school district. That differs from district to district.

  • 12:15:18

    WEINFELDSo all of this is very overwhelming for any parent, even for myself as -- late in my career, I had a child who had a mild disability, and, even having spent years and years in special education, it was overwhelming for me to go into an IEP meeting because I knew my own emotions were getting in the way. I didn't know whether to trust them or whether to put more faith in what I was hearing from the professionals across the table. So parents need help in this process, and I think it's very important to get that help to navigate the process appropriately.

  • 12:15:54

    NNAMDIYou mentioned IEP, and you said earlier individualized education program. Well, then IEP is an individualized education program.

  • 12:16:03

    WEINFELDThat's correct.

  • 12:16:03

    NNAMDIClearly, this process can be challenging even oppositional. We heard Molly talk about what her first experience was with the system. It generally starts with a meeting with the public school to discuss the child's needs and available services. But some school districts require their own assessments so the medical history or the medical diagnosis that the parent might have might not be appropriate for that particular school.

  • 12:16:28

    WEINFELDWell, let me change what you said just a bit.

  • 12:16:33

    NNAMDISure.

  • 12:16:33

    WEINFELDAll school districts will review outside assessments that have been done.

  • 12:16:39

    NNAMDIOK.

  • 12:16:40

    WEINFELDThey also -- all school districts who are responsible for performing their own assessments as part of a process when a student is suspected of having a disability. So parents have a choice. They can bring in assessments that have been done, which the school will review and school may accept in total and not need to do more.

  • 12:16:58

    WEINFELDOr the school may say, well, in addition to this private report that was done, we will -- we want to do a little bit more evaluation maybe to bring things up to date or to complete the picture. So it's -- parents have a choice there, and again, an educational consultant can help them with weighing that choice about is it better to bring in a private report, to let the school do the testing or to have some combination of both.

  • 12:17:24

    NNAMDIWell, one of the reasons I raised that issue is because we heard from a number of parents who said that their public school did not necessarily accept the medical diagnosis presented to it and that many schools have their own assessment process. Heather Revis in College Park, Md. responded to our public insight network inquiry and talked about her 6-year-old son who has autism.

  • 12:17:47

    MS. HEATHER REVISHe was diagnosed with autistic disorder at age 2. He is high functioning. He's made leaps and bounds. Like, he wasn't talking at 2, but he is now. I can't get him to shut up so -- and based on the testing that they did in the school, they felt like he was so high functioning that it wouldn't be appropriate for him to be with kids -- autistic kids who less functioning than he was. So you kind of get caught in the middle there because then they don't have any other placement for him but to mainstream him.

  • 12:18:25

    NNAMDIWell, Heather chose to take her son out of the public school and home school him. It sounds like a cliché, but when it comes to special needs kids, every child is different. We heard stories like this from a number of parents, and yet many schools seem to have a one-size-fits-all approach. First, you, Rich, and then Molly.

  • 12:18:44

    WEINFELDWell, a few things that she said that I wanted to respond to. One is that absolutely every school district is responsible for educating students with special needs across the spectrum. And what I heard her say is that the school district did not have a program for high functioning students with autism. That's not unusual that a school system wouldn't have that, but, number one, that doesn't release the school district from the responsibility of providing something, whether they can do it publicly or through funding a private program.

  • 12:19:17

    WEINFELDI do want to point out Montgomery County where I worked as a public educator for 30 years does have some wonderful public programs for high functioning students both with learning disabilities and with autism. And again, it's important that we not overlook these bright students who also have disabilities because their needs are just as real and just as great as students who may be lower functioning. And just -- the last point I'll mention is that other school districts in our area are developing more programs that are more options for students who are higher functioning.

  • 12:19:51

    NNAMDIMolly Whalen?

  • 12:19:52

    WHALENWell, I think it's also important to understand that there are many different disability codes from autism to Down syndrome to hard of hearing. The other piece is that it's important to understand is that the federal law requires that there be a continuum of special education. So that means that both within the school systems and with nonpublics, like an Ivymount, that there be options for those special education.

  • 12:20:18

    WHALENSo it might be being completely included in a general ed classroom with supports like an aid or extra time on tests or, you know, one-on-one time with the special education teacher. It might be a stand-alone classroom within a school that is for autism or for learning needs or different times. Or it might be an outplacement to, like, an Ivymount or other nonpublics.

  • 12:20:43

    WHALENAnd it's important, and what we don't do well here -- and probably anywhere -- is that that continuum should move around. You know, we talk about the individual education plan. My son and my daughter's IEPs from four years ago are completely different now because they're growing, they're changing, they're constantly meeting goals.

  • 12:21:03

    WHALENThe placement issue should be the same thing. They may need a more -- they call them non-categorized rooms or more stand-alone rooms for a while and then they can be back into the general ed. We need to have that flexibility for our students and for our schools. A one size does not fit all even within, you know, a certain year within special education.

  • 12:21:26

    NNAMDIHeather Reeve's other issue was that her son had sensory issues like many kids with autism and can't be in a classroom of 18 kids. But your turn, Cherie Takemoto.

  • 12:21:35

    TAKEMOTOYes. I think it's important that people understand that labels should never drive the placement, that individualized in individual education program means it's individual to the child. So if a child has sensory needs, if a child has autism and isn't gifted -- Rich was telling me he had a program for that in Montgomery County -- that the label of autism doesn't drive what you get.

  • 12:21:59

    TAKEMOTOYour child's individualized needs and the way you present your child's individualized needs should drive the individual education program. And, unfortunately, too many schools have one-size-fit-all, as well as too many parents and too many teachers think that the label means this is what you're going to do when you grow up. And it doesn't.

  • 12:22:21

    NNAMDIYou pushed for your son to be included where possible. Can you talk about that?

  • 12:22:28

    TAKEMOTOAt the beginning, I pushed for him to be included, period. In fourth grade, they put him in a self-contained class, and I was very, very upset. However, before I marched over to the school all angry, I said, so, Pete, do you like being in that class? And he said yes. So then I thought, oh, I've been such a terrible parent.

  • 12:22:55

    TAKEMOTOI've made him be with kids and struggle too hard. So I said, so, Pete, does that mean you don't want to be with the other kids? And he said no. He just wanted an opportunity to learn things a little bit more his pace. But those friends in fourth grade from the regular classroom remain his friends today, and some of them have become teachers themselves.

  • 12:23:21

    NNAMDIGot to take a short break. If you have called, and many of have, stay on the line. We'll get to your calls. There are still a couple of lines open, so you can call us at 800-433-8850. Do you feel your special needs child -- your special need child's education needs are being met? You can also send email to kojo@wamu.org or send us a tweet, @kojoshow. I'm Kojo Nnamdi.

  • 12:25:21

    NNAMDIWelcome back to our conversation about educating special needs kids. We're talking with Cherie Takemoto. She has been a disability advocate since her son Pete was born 25 years ago with complex health care needs. She is co-author of "Negotiating the Special Education Maze," a guide for parents and teachers. She's a senior research associate with New Editions. That's a consulting firm. She's also an adjunct professor at George Mason University.

  • 12:25:46

    NNAMDIRich Weinfeld is director of Weinfeld Education Consulting Group. They are education consultants, advocates and service providers. He is co-author of several books including "School Success for Kids with Asperger's Syndrome," "Smart Kids with Learning Difficulties," "The Special Needs Advocacy Resource Book" and "Helping Boys Succeed." And Molly Whalen is the mother of two children with autism.

  • 12:26:07

    NNAMDIShe is the director of development and communications with the Ivymount School in Rockville. That's a nonprofit school that provides educational programs and therapeutic services to special needs students. A number of you have called. I'll go directly to the phones, starting with Rona (sp?) in Potomac, Md. Rona, you're on the air. Go ahead, please.

  • 12:26:26

    RONAHi. I'm calling because I have a deaf son with cochlear implants, and we actually had to move out of the area to get him what he needed. We lived in Ashburn, Va., and by law, the county did have a program, but it wasn't rigorous enough. And we looked at Montgomery and Fairfax County, but the place where he needed was in St. Louis, Mo. because it was a self-contained class for aural kids with lots of -- therapy that just wasn't available -- so my husband stayed around D.C., and the kids and I moved to (unintelligible).

  • 12:26:57

    NNAMDIYou moved out to St. Louis, Mo. You're fading out on me, Rona. You moved to St. Louis, Mo., and how long did you live there?

  • 12:27:03

    RONAWe lived there for three years. The school is called The Moog Center, and there's other, actually, D.C. families that happen to have -- did same thing we did because to have child with cochlear implants, signing can be confusing to them. So the research is completely different there. And in 2010, when he was ready to be mainstream, we moved back to Montgomery County because the services are so fabulous here.

  • 12:27:24

    NNAMDIDo you have any idea if in 2013, you'd have to make the same decision that you made...

  • 12:27:29

    RONADefinitely. What we need...

  • 12:27:30

    NNAMDISame situation?

  • 12:27:31

    RONAYeah. Well, because in -- well, I mean, I don't have to do that now for him 'cause he's caught up.

  • 12:27:36

    NNAMDISure.

  • 12:27:36

    RONABut in order to getting caught up, we had to go to St. Louis.

  • 12:27:39

    NNAMDIRich Weinfeld, is there any likelihood that the situation has improved in the Washington area or -- because there are very specific cases that we're talking about here.

  • 12:27:48

    WEINFELDYeah. I can't speak directly to the programs for the hard of hearing that might be available for a similar situation. But, you know, what I can say is that as Molly referred to before, there should be a continuum of services available in every school district. And if Rona had stayed in Montgomery County and had gone through the IEP process, and she may have tried this first, but if she had gone through the IEP process, Montgomery County may have offered a program that they thought would meet her child's needs.

  • 12:28:23

    WEINFELDShe would have had either an opportunity to agree with that, or there are dispute options she could have followed to object to what they're offering. It's possible she could have gotten to a place where while living in Montgomery County, her son could still have attended a program outside of Montgomery County if that was the only program that could implement his IEP.

  • 12:28:45

    NNAMDIMolly, you've navigated many of the options here in D.C. in cases where parents are not happy with the IEPs or the individualized education program the school district comes up with. What are the options?

  • 12:28:56

    WHALENWell, it's really difficult, and I think Rich is absolutely correct that you often need to look for support and education consultants and sometimes attorneys, and it becomes very -- it becomes a fight, and it becomes a battle. And it's no secret that D.C. and DCPS have had so many challenges and a very broken system and special education for a long time. I have to give a shout-out to them though, but they have, over the last couple of years, really come a long way.

  • 12:29:23

    WHALENI mean, we didn't even have a state education agency until -- I think it's now six years, that's OSSE, the Office of State Superintendent for Education. You know, but they were under court order compliance issues. And so it's very -- if you're not even doing the forms and the assessments and all of these pieces right, you're never going to get to quality. The other complication with D.C. is the charters. And I'll be very honest, we're on our second charter, and I left D.C. for my daughter.

  • 12:29:54

    WHALENShe's started at a public charter that was a preschool, and it was inclusion-based, and it was excellent, but it only went to five. We went to our neighborhood at D.C. school and again, gave a shout-out to the fantastic staff and teachers and principals of DCPS. They really try hard, but you can only do so much with limited resources. And we've since gone to a very -- a strong charter, Capital City Public Charter School.

  • 12:30:21

    WHALENI have to give a shout-out to them because they accepted this very complicated kid with autism and learning disabilities. And she lotteried in. But it is the law that the public charters have to do everything that DCPS and all the public charters do. And I don't think enough parents know that that is an option, but you still have to do all the things we talked about working. But it takes a lot of parent involvement, a lot.

  • 12:30:45

    NNAMDIAnd, Rich, when is private school paid for by the school district an option?

  • 12:30:51

    WEINFELDAgain, going back to this continuum of services, when we go through the IEP process for each student, we look at, can goals and objectives and services that the IEP calls for be implemented, ands where can it be implemented? And we always start with what's called the least restrictive environment. We start by looking at the neighborhood school. Is that a place where this IEP can be implemented?

  • 12:31:18

    WEINFELDFor most kids, it is and it should be. For a small number of kids, they may need a program somewhere else in the school district that brings together students who have a similar problem and marshals resources in that way. And for a still smaller number of students, the school district may not have any option, any environment that meets that student's needs and can really implement the IEP. And in that case, the school district is responsible for paying for the private school placement that can meet the child's needs.

  • 12:31:48

    NNAMDIRona, thank you very much for your call. I want to take two other calls. First, Kimberly in Washington, and then I'll go to Lynn in Fairfax, Va., because both of them are talking about, I guess, a similar diagnosis. But, Kimberly, I'll start with you. You're on the air. Go ahead, please.

  • 12:32:03

    KIMBERLYHi, Kojo. Thank you so much for taking my call. I -- before I say anything else, I just wanted to say that I am certain that we are not dealing with a degree of disability that other parents, including those on your panel, are -- have. And I don't mean to suggest that our science is enough that they're always parallel in terms of the challenges that you all have encountered. But I did want to mention that, since I have two children with ADD, and I was, perhaps, naive, but I was really shocked.

  • 12:32:29

    KIMBERLYWe're in Fairfax County. I was shocked at the degree of their adversarial quality of the engagement we have with the school when we approached them to ask for services with the documented disability. Both my kids have a 504. They don't qualify, or we have not yet pushed for IEPs. But they're both doing fine with the 504s.

  • 12:32:50

    KIMBERLYBut to get the 504 established, we had to go before a panel of people and make a case for -- so my daughter, in particularly, her qualification for additional things like, you know, repetition of instructions and, you know, written copies of assignments and, you know, duplicate copies of text, I mean, these are not extraordinary services. But what we found was that they -- I mean, when we asked under what conditions will these things be provided, and they said, well, we have a checklist.

  • 12:33:26

    KIMBERLYAnd we said, could we have the checklist? And they said no. And so here we all were thinking -- or, you know, my husband and I were thinking (unintelligible) pulling for the child here to give her what she needs to be most effective. And we felt, I guess, kind of surprised and shocked at how immediately adversarial the relationship became where we were almost as if in a court having to make a case instead of everybody sitting down and reflecting upon what they thought was best for the child.

  • 12:33:53

    NNAMDIWell, I'm in -- what I'm getting from you is that they seemed to imply that showing you the checklist would be allowing you to, so to speak, cheat on the test?

  • 12:34:02

    KIMBERLYWe have a disadvantage. And it seemed like, you know, we just needed another criteria for which things are appropriate, and we don't even know going in whether an IEP or 504. And when we were done with our initial discussion where they determined that she was eligible for a 504, one of the school counselors handed our...

  • 12:34:18

    NNAMDIWhat is a 504?

  • 12:34:20

    KIMBERLYIt is under -- I'm going to let your panelists take this on, but I think it's something with disability.

  • 12:34:23

    NNAMDIOh, good. Allow me to have Rich respond. Rich.

  • 12:34:27

    WEINFELDA 504 plan, it's a separate law from the special education law. 504 plans are anti-discrimination or civil rights laws that make sure that no one is discriminated against because of their disability, and they affect any program that receives federal funding. So that includes schools, of course. It also includes the workplace for many people later in life. Section 504 plans typically are just accommodations. Now, the law doesn't really limit them to that. They could also include some services.

  • 12:35:01

    WEINFELDBut in the way school districts implement them, they typically are just accommodations. So they would be things that the general ed teacher would do a little differently for the student with a plan. It might be preferential seating or access to a word processor or repetition of directions or extended time. So that's typical. And then the difference in IEP is you might have those accommodations, but you'll also have goals and objectives that are being worked on, and you'll also have direct service from a special educator.

  • 12:35:30

    NNAMDIWhat can we extrapolate from Kimberly's experience? Did you, Cherie, find the process in which you were involved adversarial?

  • 12:35:39

    TAKEMOTOIt's a matter of how you've scope what it is that you're going to say. And I know there are professionals like Rich that help people do that. But also, it's about education. And I want to do a shout out to every state. Maryland, Virginia, D.C., has a Parent Training Information Center. Those centers provide free information to families who have questions about, OK, so my child has ADHD.

  • 12:36:02

    TAKEMOTOWhat are some of the accommodations that are available? What does the research say? What do -- what does the Department of Education and all the experts say because the services provided must be research-based, which means if it ain't working, it's probably not the right services.

  • 12:36:19

    NNAMDIRich.

  • 12:36:21

    WEINFELDThis issue of adversarial meetings is a big issue. And we -- in our practice, we really strive to be collaborative. We come into the meeting assuming that everyone has the best interest to the child at heart, that we're going to focus on this individual child, that there are good people on both sides of the table. I was one of the people on the other side of the table and I haven't' changed.

  • 12:36:47

    WEINFELDSo the idea is to look for people who really are kid-focused, who are going to really think about this particular individual child and what is best for this child at this time. And usually we're able to help move the meeting into that kind of problem-solving, collaborative approach.

  • 12:37:04

    NNAMDIBut we cannot help but remember the first question Molly was asked when she went in. Got a lawyer?

  • 12:37:10

    WHALENAnd I just have to add, I have never attended an IEP meeting, and you have to have at least one -- you have to have one annually and you can also call for a meeting at any time as a parent. I've never attended one where I haven't brought food or coffee or lunch. And it was excellent advice I got from an aunt who was a special educator. And it creates the format. But I will also tell you, I've always asked for a box of Kleenex on the table, too, because you will cry and you'll get angry and we have to think about the child.

  • 12:37:40

    WHALENBut it is in an emotional piece. One of my child's IEP is about 35 pages long. And if you think about an IEP, it's all about deficits, really. It's here's the disabilities, here's what they're not doing, here's what we're going to try to do. And it's a bit of a knife in the heart of a parent every time you look at that and realize this is how far behind your child is and has to help. It's -- they're hard.

  • 12:38:03

    NNAMDIKimberly, thank you for sharing that with us. Len in Fairfax Station, Va., had a slightly different ADHD experience. Len, your turn.

  • 12:38:12

    LENWell, what I found out early in the process of having my son diagnosed with ADD is -- and it was a shock to me, but it's important for parents to know that the school's job is to teach the kid through their disability. So the school wasn't going to do anything for my kid's ADD. So it was my job to find therapy for him, to address the problem so he didn't have ADD. Otherwise, the 504s and the IEP were just going to say how to teach him through the ADD. So I had to go out, and I found neurofeedback.

  • 12:38:51

    LENAnd then, you know, that ameliorated so many symptoms of the ADD that he didn't need a 504 and he didn't need and an IEP after that. But there's a lot of programs out there like hard math and captain's log and neurofeedback that all specifically address disabilities that, you know, remove the symptoms so that they're not categorized with such drastic disability.

  • 12:39:21

    LENAnd the research on neurofeedback was done and they can reduce autism symptoms by 40 percent using neurofeedback. And so the schools are teaching around disabilities. They're never going to actually help the child but they're just going to push them along. If he reads at a first-grade level, we'll make him read at a 1.5-grade level by the end of the year. They're not going to help the disability.

  • 12:39:50

    NNAMDIHere's Rich Weinfeld.

  • 12:39:52

    WEINFELDSo I differ a little bit in that. If you have a good IEP, Individualized Educational Plan, it targets the areas that the child needs to work on. And for a student with ADHD, that may be to improve their attention to task, improve their organization, just to give two examples. The IEP should address goals in those areas to help the student improve in those areas and should provide services.

  • 12:40:20

    WEINFELDNow, again, does every IEP do that automatically? Absolutely not. And that's a process that has to be worked through the IEP team, and we have to make sure that all the present levels that we look at, all the areas that have been identified by a good assessment as the areas of need, they're all being addressed through goals and objectives, and then there are services to work on them.

  • 12:40:42

    NNAMDIGot to take a short break. When we come back, we'll continue this conversation. Len, thank you very much for your call. The lines are busy. If you're trying to reach us, go to our website, kojoshow.org, or send us an email to kojo@wamu.org. What special education programs does your child's school offer? You can also send us a tweet, @kojoshow. I'm Kojo Nnamdi.

  • 12:42:43

    NNAMDIWelcome back. We're talking educating special needs kids with Molly Whalen, mother of two children with autism. She's the director of development and communications with the Ivymount School in Rockville. Cherie Takemoto has been a disability advocate since her son Pete was born 25 years ago with complex health care needs. And Rich Weinfeld is director of Weinfeld Education Consulting Group, education consultants, advocates and service providers. Before we get to the issue of cost when we took that break, first, Molly, you were going to say?

  • 12:43:15

    WHALENI think that the key -- we keep talking about IEP teams. I think it's really important to explain that the parent is always a member of the team and can always suggest goals and push things. And we're talking about a team that's made up of a classroom teacher, a special education teacher, often related services like occupational therapy, physical therapy, speech therapy, certainly the school.

  • 12:43:38

    WHALENSo we really do mean all these people that are working with the child, and if it's a complex child, like autism or Down syndrome or other issues. But the absolute important thing I would share with parents is you are always -- can always be the driver, and you are in the integral member of the team. And at some point, the child should also be involved in the IEP. I think it's at 13 on some jurisdictions, but they should be part of their plan as well.

  • 12:44:03

    NNAMDIAnd, Cherie Takemoto, you wanted to -- for us to keep our eyes on the prize, so to speak, to understand what the objective here is.

  • 12:44:09

    TAKEMOTOYes. The goal of special education is high school graduation with a regular diploma, going to college, working in the community. So if a child is behind, whether it be ADHD or something else, the goal, if they're a little bit behind in reading, shouldn't be, oh, they'll make up a year because all the other students make up a year. If they're two years behind, the goal should be that they're going to get up to the speed of their peers.

  • 12:44:36

    NNAMDIOn now to Anthony in Annandale, Va., who has another concern. Anthony, your turn.

  • 12:44:42

    ANTHONYYeah. How're you doing? My daughter had seizure since 12 hours after birth. And we had -- matter of fact, I just came from her IEP yesterday. She's getting all the services she needs. She's -- she'll be 10 years old this month. And what I want to know about is how come some people know about all these programs that help you financially to get new chairs and buy things that you need and others like me? I'm working three jobs just to try to keep up.

  • 12:45:17

    NNAMDIRich, the cost of services for a child with disabilities can be staggering. You may want to offer some tips to Anthony and talk about why some families seek what are known as Medicaid waivers. Can you explain what that means?

  • 12:45:31

    WEINFELDYeah. First of all, the cost involved with kids with special needs can be staggering, and there are, as Anthony says, there are a lot of options in the community. A couple of them I wanted to mention because we're involved in them is, through the Office of the State Superintendent that Molly was talking about before in D.C., there is a Strong Start office which does no-cost assessment for students before the age of three.

  • 12:46:01

    WEINFELDWe, through our psychologists and neuropsychologists and other service providers, are one of the groups that do that assessment, and we're very proud to do this multidisciplinary assessment at no cost. There -- we also work closely with the Children's Law Center of D.C., and they're a wonderful group that is dedicated to advocating through the courts when necessary, but advocating in general for students who have special needs.

  • 12:46:28

    WEINFELDAnd they are typically of no cost to the client as well, and they use us for our advocacy and also for our assessment. So there are some -- those are two examples of many, many examples. And, you know, I don't think any of us could name all the possibilities, but I would -- what I would say to Anthony and other parents, if you contact a group such as mine, we will connect you with the resources that are needed for your particular child.

  • 12:46:52

    NNAMDIHere are some comments we got from our Public Insight Network about cost. And stay on the line, Anthony, because we may have some more advice for you. One comment: "When I did our taxes this year, 30 percent or so was out-of-pocket medical expenses." Another: "I've not been able to return to being a full-time practicing attorney."

  • 12:47:09

    NNAMDIA third person says, "I cannot go back to work because nobody will take care of my child." A fourth says, "I am a lawyer. I speak English as a first language. I have the time and resources to be able to devote to researching available services. Even with all these advantages, it took four years to discover and enroll our child in D.C.'s Katie Beckett Medicaid waiver program." Medicaid waiver.

  • 12:47:35

    WEINFELDSo every state has some type of Medicaid services available for children with special needs. I think as autism particularly has come to be more and more of a prevalent disability, better diagnosed disability, more state legislatures are wrestling with how to provide more benefits to parents. In addition to qualifying through Medicaid, there are waivers available which allow families to get more services. And the purpose of this is to keep students out of institutions, so they have wraparound services to allow students to stay in the home.

  • 12:48:17

    NNAMDIHow do those waivers work, generally?

  • 12:48:20

    WEINFELDThe first thing I would say is, unfortunately, they are oversubscribed. There are long waiting lists from -- in many jurisdictions.

  • 12:48:27

    NNAMDIMany parents say that they wait for -- a Medicaid waiver can be as much as 10 years long.

  • 12:48:32

    WEINFELDI've heard those stories too.

  • 12:48:34

    NNAMDIYou wanted to say, Cherie?

  • 12:48:35

    TAKEMOTOYeah. The Medicaid waiver, children with -- who are 18 are eligible based on their income. So many children with disabilities aren't making enough income. But for parents who are earning money, the Medicaid waiver may cover services if you can wait long enough or if your situation is dire enough if they would otherwise, as Rich said, be institutionalized. And every jurisdiction is different, and it's difficult to find out about all these things.

  • 12:49:05

    TAKEMOTOAnd my whole as a disability advocate has really been OK. So my son Pete has been very privileged. He's gotten a lot of services. But what about the people who don't know about these services, that they exist, and don't know how to use this information or the special education information to help their children in school and in life?

  • 12:49:27

    NNAMDIAs Rich pointed out, the Medicaid waiver program exists in just about every jurisdiction, but they can defer a waiver being a program that can wait or set aside some of the strict eligibility requirements including income guidelines, benefits and health care delivery options required under federal Medicaid program regulations.

  • 12:49:46

    NNAMDISo you owe it to yourself if you are the parent of a child with a disability to check out whether you can be eligible for a Medicaid waiver. Anthony, thank you very much for your call. A recent program on "Planet Money" discussed Social Security disability benefits in children. And many parents of children with disabilities felt the coverage did not present an accurate picture. Did any of you hear the show? And what was your response to it? First, you, Cherie.

  • 12:50:15

    TAKEMOTOSo my son Pete is on SSI. And he became eligible at age 18 based on his income, which was working at Safeway every weekend. I don't think a lot of parents know and understand that children -- 16 to 22 -- can make almost any amount of money and that goes toward their Social Security retirement. So now at age 25, Pete is receiving Social Security based on his income history.

  • 12:50:44

    TAKEMOTOAnd if more families understood that, it's so important for kids to get work experience, and that no one will ever be worse off because they're earning money except for, as you just were talking about, the Medicaid coverage and medical coverage.

  • 12:50:59

    NNAMDIMolly Whalen.

  • 12:51:01

    WHALENYou know, I think -- I can't speak specifically to the Medicaid waiver and the issues. But I think that one of the things that I feel is imperative to say is that special education isn't cheap. We're not going to be able to do this in a really economical way. You need teachers and resources and all of those things, and even more so as, you know, let's be honest, I think the autism numbers now are one in 55 kids.

  • 12:51:27

    WHALENThose numbers are going to grow up, and they're going to need adult service providers, they're going to need job's coaches and job support, and we just don't have enough within the state's budgets or even those organizations out there. It is a huge, huge issue, and it's beyond just, can you get a waiver and be in a waiting list for 10 years? That's a broken system. That's not going to help. And most importantly, as Cherie mentioned, we want our, you know, when they become young adults with disabilities, we want them to be working.

  • 12:51:59

    WHALENWe want them to have -- be part of the community. That's something that Ivymount School does very well. They have post-high school program, that's School-to-Work and vocational training, to give those job skills, even things like -- with autism, even things like, how do you work with a boss, how you do get there? Many of our, you know, young adults with disabilities aren't going to be able to drive. They're going to need travel training.

  • 12:52:22

    WHALENThey're going to have to -- can you manage some of the young adults with disabilities on the Metro when the Metro trains aren't working? I mean, it angers all of us who can navigate. I can only imagine how a young adult with disabilities. It's a much, much larger issue than just the way (unintelligible).

  • 12:52:38

    NNAMDIWell, Cherie, you mentioned your son working at Safeway. He is taking the next step after high school. And I was going to ask you to talk about the program he's involved in, but I suspect in Lynn in Reston, Va., wants to talk about it also. Lynn, you're on the air. Go ahead, please.

  • 12:52:51

    LYNNHi. Hi, Kojo. Yes, my son Conrad has cerebral palsy, and he is a roommate of Pete at the LIFE Program at George Mason University. And he loves it. He's become the individual we always knew he would. He had also gone to Ivymount and the Lourie Center. And we had spent a lot of our savings on his education as we still are. And he has bloomed more than he ever did in Fairfax County schools, and he is -- he's wanting to work on Capitol Hill. He goes on the Metro with a student mentor. And I'm sure Cherie can tell you more about this program...

  • 12:53:42

    NNAMDIIndeed...

  • 12:53:42

    LYNN...because she is more expert at this.

  • 12:53:44

    NNAMDI...she is one of the people who helped to get this program rolling. And it's my understanding that Pete is in his third year of the program. Tell us a little bit more about it.

  • 12:53:52

    TAKEMOTOOK. Well, I can't take credit for getting it rolling, but I can take credit for getting Stephanie Lee, who is then the director of special education for the federal government, and Michael Behrmann, who is still the director or executive director of the George Mason Center for Human Disabilities, together. As I said...

  • 12:54:11

    NNAMDIAnd they created the program.

  • 12:54:12

    TAKEMOTOWell, yeah. As I said, every time I look who's ahead of Pete and how they going to make this happen, and so I ask Stephanie, so what are you going to do for Laura when she goes to college? And she said, well, she needs -- she wants to stay here in town. So I go, goodie. Let me get you in touch with Mike. And Stephanie and Mike put together a program that was making up for all the things that didn't happen for kids in high school.

  • 12:54:35

    TAKEMOTOAnd so these kids learned how to read for the first time when they went to Mason, and they learned to navigate across campus and socialize and go to dances and movies and sports events and be the biggest cheerleaders at the George Mason basketball games. And, you know, it's just the most wonderful program. And I thank Mike Behrmann, if you're listening, Dr. Graff, who is in charge of it now, and Stephanie Lee, I'm sure you're there, for starting this program.

  • 12:55:07

    NNAMDIAnd, Lynn, thank you very much for your call. We move on now to Monica in Bethesda, Md. Monica, you're on the air. Go ahead, please.

  • 12:55:16

    MONICAHi. Thank you, Kojo. I love your show. You're a great (word?) of information. I'm calling -- I'm a board member of a organization called Partnership for Extraordinary Minds. And we function in Montgomery County. And our goal is to improve the educational experiences and outcomes of children on the autism spectrum in Montgomery County and elsewhere. And we're having our annual -- this is our fifth annual forum -- on Tuesday, April 23.

  • 12:55:42

    MONICAAnd we -- we're co-sponsoring us with Montgomery County Public Schools. And all of the diploma track and non-diploma track services for students on the autism spectrum in Montgomery County will be discussed in grade 12 -- K-12. So I want to make sure parents knew that this resource is out there if they had questions and having a hard time getting information about autism services in MCPS.

  • 12:56:07

    NNAMDIThank you very much for your call, Monica. We now move to Eric in Vienna, Va. Eric, you're on the air, but we're running out of time very quickly. Please make your question or comment brief.

  • 12:56:17

    ERICYes. I actually grew up in the Fairfax County special education program. I then went on to graduate with a degree in environmental science, that's worked in water security, and I'm currently employed by a local health department as a health inspector.

  • 12:56:32

    NNAMDII guess that would be our experience of a success story in your case, Eric.

  • 12:56:37

    ERICYes.

  • 12:56:38

    NNAMDIThank you very much for sharing that with us. Molly Whalen, in the little time we have left, what advice do you have for parents who may be at the beginning of this journey?

  • 12:56:46

    WHALENI think you have to not give up. You have to trust your instinct if you don't feel that -- even without getting all the experts in, if you don't feel like your child is getting what they needed. You have to put off the Ms. Nice Guy and be very forceful and very pushy and ask a lot of questions. And I think don't lose track that's it's going to get frustrating, it's going to be scary, but you just have to keep -- it's a never-ending journey.

  • 12:57:14

    NNAMDIAnd bring cookies, bring food.

  • 12:57:15

    WHALENBring food. It works every time.

  • 12:57:17

    NNAMDIWe reached out through our Public Insight Network asking parents of special needs children to share their experiences. As I said early, we got an overwhelming response. And you can find that, the additional interviews and excerpts from some of those parents at our website, kojoshow.org. I'm afraid that's all the time we have.

  • 12:57:34

    NNAMDIRich Weinfeld is director of Weinfeld Education Consulting Group, education consultants, advocates and services providers, co-author of several books including "School Success for Kids with Asperger's Syndrome," "Smart Kids with Learning Difficulties," the special needs advocacy resource book, and "Helping Boys Succeed." Thank you for joining us.

  • 12:57:52

    WEINFELDI'm glad to be here. Thank you.

  • 12:57:53

    NNAMDIMolly Whalen is the mother of two children with autism. She is the director of development and communications with the Ivymount School in Rockville, Md. She's the former chair of the D.C. State Advisory Panel for Special Education. Molly Whalen, thank you for joining us.

  • 12:58:06

    WHALENThank you very much.

  • 12:58:07

    NNAMDIAnd Cherie Takemoto has been a disability advocate since her son Pete was born 25 years ago. She is co-author of "Negotiating the Special Education Maze: A Guide for Parents and Teachers." She is senior research associate of New Editions. That's a consulting firm. And she is an adjunct professor at George Mason University. Thank you for joining us.

  • 12:58:27

    TAKEMOTOThank you so much for inviting us.

  • 12:58:28

    NNAMDIAnd thank you all for listening. I'm Kojo Nnamdi.

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