Dena Hook and Lauren Shillinger

Individualized educational programs—or IEPs—are ever-evolving plans designed to support your special needs child as he or she embarks on a journey through the educational system. IEPs can incorporate services ranging from speech therapy, counseling, curriculum modifications, to mobility amenities—all to help children with rare and severe epilepsies like Dravet syndrome, Lennox-Gastaut syndrome (LGS), and tuberous sclerosis complex (TSC) thrive in the general educational environment.

An IEP team—composed of parents, teachers, special educators, and district representatives—evaluates your child and helps determine which services and support he or she needs. This collection of support services and annual goals then become your child’s unique IEP.

Despite the fact that IEPs are intended to be helpful, we’ve found that many parents struggle with the whole process, and for a variety of reasons: unsympathetic administrators, inadequate knowledge of the process, and insufficient staffing at the school, to name a few. But regardless of where your child is in his or her educational journey, there are steps parents can take to establish a solid, working relationship with their child’s school system.

To discuss some of these strategies, we recently sat down with Dena Hook, Vice President of Support Services for the Tuberous Sclerosis Alliance, and Lauren Shillinger, Chair of the Tuberous Sclerosis Alliance volunteer branch in Maryland and mother to a 5-year-old daughter with TSC, to discuss their advice when it comes to planning an IEP for a special needs child.

Lauren Shillinger's daughter, Brynleigh.
Lauren Shillinger's daughter, Brynleigh.


Why are IEPs so important for children with special needs and their parents?

Lauren: Well, let me start by saying that my perspective as a relatively new IEP mom is probably different than, say, a parent who’s been doing this for 10 years. Because, prior to starting pre-K last year, Brynleigh had only ever been with us in a bubble. She was diagnosed with TSC when she was 9 ½ months old and, up until the moment she started school, we’d been the ones controlling her seizures, administering her rescue meds … so the notion of sending her to school—to a place where we had no control—was initially terrifying. Is anyone in this school going to have any experience—never mind with TSC—but with epilepsy in general? And at my child’s school, the answer was a resounding no. Not a single faculty member was trained in seizure response. In fact, when Brynleigh started school, they said: “We have to admit, we’re a little scared of your child.” And I responded, “Well, to be honest, I’m terrified to give her to you.”

Because when you’re building IEPs for kids like ours, not only are you fighting for educational services, you also have the health component to worry about. So it’s not just the IEP planning. It’s the rescue meds, the seizure action plans. And, remember, we have to redo this process every year. Sometimes multiple times a year if a new teacher or therapist comes on board. It’s a lot!

“We have to admit, we’re a little scared of your child." And I responded, “Well, to be honest, I’m terrified to give her to you.”

But Brynleigh’s almost 5 now and about to enter her second year of pre-K (which she was able to qualify for given her late November birthday), so we’ve already been through the IEP process once. And if you lay the right groundwork and establish good relationships with your school’s administrators, then it can get easier with practice. Last year, Brynleigh was in a mixed pre-K class—7 kids who had IEPs and 7 kids who were considered “typical” or “model” peers. Per her IEP, she received speech, physical, occupational, and music therapy every week. Music has been amazing for Brynleigh. She can sing more than she can speak. She really connects with music and it’s a huge motivator for her, so the music therapy has really been a blessing.

“Because when you’re building IEPs for kids like ours, not only are you fighting for educational services, you also have the health component to worry about.”

By far, the biggest benefit of an IEP for Brynleigh is the fact that it’s enabled her to be in a classroom of her peers. That, together with the music therapy, has been a game changer for her. She’s learning greetings! She can say “hello” and “goodbye” to her teachers because of songs she’s heard. Also, Brynleigh was so delayed that she was able to qualify for an extended school year (or “ESY” as it’s commonly referred to) which is a critical piece because we don’t want Brynleigh to regress or lose any of those skills that were so difficult for her to obtain in the first place. We want to keep her in her routine, with her peers, in a school setting, so she can more easily transition back in the fall.

Complex medical issues are really hard for kids, and her normal is very different than for most 4 ½ year olds. But we try to make things as normal as possible for her despite our strange, complex medical life. And IEPs help with that, for sure.


How are IEPs designed to support children with special needs?

Dena: In 1975, the Individuals with Disabilities Education Act—or IDEA—was first enacted. Previously, children with disabilities, or those with IQs below 70, were considered uneducable, and therefore they weren’t allowed in schools. But when Public Law 94-142 (later reauthorized as the Individuals with Disabilities Education Act) came around, it changed all that by asserting that all children are entitled to a free, appropriate public education.

Every few years, the law gets reauthorized and made more appropriate for the times. About 20 years ago, the law was amended to say that not only are kids with disabilities allowed in the general curriculum, they also need to progress. So today, with the help of IEPs, children with disabilities can’t just be babysat in school; they also have to make progress.

“So today, with the help of IEPs, children with disabilities can’t just be babysat in school; they also have to make progress.”

So today, the way it usually works is that children born with a disability are put into early intervention services. And this service stays in effect until they’re 3 years old. At that point, the children are reassessed and, if they meet the criteria, an IEP is put in place. In other words, an IEP usually begins as a child transitions out of early intervention. For the children out there who have learning disabilities that aren’t detected right away, parents can request an evaluation to determine whether their child is eligible for an IEP. If so, the IEP is usually put in place within 60 calendar days of that request.

And remember, IEPs are actually federal documents. This means that schools are required to follow them.


What advice can you offer parents trying to plan for a successful IEP?


Lauren: Here’s the thing you have to understand—when you go into an IEP meeting, it’s not like going into a restaurant. They don’t give you a menu of service to choose from. So if you don’t do a little research, or talk with other parents or someone like Dena beforehand, you won’t know what to ask for.

Take music therapy, for example. I would have never known to ask for that on my own. You really have to be your child’s advocate and you have to do your research. You have to be able to identify what it is you want—what it is your child needs— and then fight for those services.

Dena: Unfortunately, more often than not, it falls on the parents to really understand the IEP document and the process of creating it. Parents really have to do a lot of legwork—talk with other parents, look into your local school district’s special education policy, know what’s available, and know what to ask for. It’s always going to be the squeaky wheel that gets oiled.

Take, for example, the fact that IEPs are federal documents. It’s important for parents to remember this, particularly if they encounter a school district run by administrators who don’t understand why children with severe disabilities should receive an education. And even in the more sympathetic districts, many school systems don’t understand what their responsibilities are when it comes to IEPs.

Lauren: That’s exactly right. I’ve definitely learned the importance of equipping myself with all of the tools and becoming an advocate and expert on IEPs, and on my child and her medical and educational needs. That’s really the key to being able to stay on top of all this.



Lauren: When it comes to managing education for a child with severe epilepsy, just like with everything else, it’s important to have a team. Just like you have your child’s medical team, you need to build your child’s educational team. And then treat the administrators and faculty like they’re part of that team … if you go in on the defense, with the attitude that the school is going to fail you and your child, then the school is more likely to be defensive in return. But if you go in with an open mind, stay positive, and treat the school like they’re a part of your team, then I’ve found that you get a better response.

Dena: Everything Lauren’s said is spot-on. Once families understand what their role is, then they can start to put things into place. Once they build an arsenal of people around them who know their child and believe in their child, then they’re no longer winging it out there. Which is why it’s so important for parents to try and establish a partnership with their school system. Because once that relationship breaks down, it’s really hard to repair the damage.



Lauren: When it comes to IEP planning, it’s so helpful if you know the terminology. Just like in the medical setting, if you can prove that you know what you’re talking about, that you’re going to be a hands-on, involved parent, the school is going to know they have to take you and your requests seriously. We’ve mentioned some of this lingo already—dropping acronyms like ESY and IDEA during IEP meetings will definitely help set the right tone!

Dena: Absolutely. Knowing the terminology immediately keys administrators into the fact that you know what you’re talking about and you know your rights. Some other acronyms you might want to familiarize yourself with are:

  • RTI (response to intervention model)
  • IEE (independent educational evaluation)
  • AT (assistive technology)
  • BIP (behavior intervention plan)
  • ITP (individual transition plan)
  • LRE (least restrictive environment)

To learn more about how IDEA can help special needs families, as well as to view a more comprehensive list of acronyms and terminology, feel free to check out an article I wrote for the TSC community: Understanding the Individuals with Disabilities Education Act.



Dena: Parents need to understand that they’re equal partners in the IEP process, and remember that they’re the experts in all matters concerning their child, including when it comes to education. And sometimes, this means empowering themselves to say “no, that’s not going to work. We need more.” Parents have to recognize that they’re equal participants, no matter what meeting they’re in, because their knowledge of their child is so vital to the IEP development process.

It’s intimidating, I know. So much is expected of special needs parents—they have to be doctors, pharmacists, attorneys … but the responsibility to push for what a child needs is always going to fall on the parents, it just is. And with IEPs, it’s no different.

Lauren: From a parental perspective, I’d also add that you’re always working on an IEP. It’s always in progress. Each year before school starts, you’re working on it—both on the medical plan and the school plan. It all has to happen before the first day of school. And I’ve definitely found that if you go in strong, with a positive, open mind, most of the time you get a more positive response.



Dena: Once you start the IEP process, write everything in that IEP. As parents, the IEP is your contract with the school. That’s why it’s so important that the document is written—and written in detail—so there’s no misunderstanding. For example, if the document states that your child is going to get speech therapy, but it doesn’t list how often your child will receive therapy, your child might end up with a once-a-month consultation. Everything needs to be written in that IEP.



Lauren: I’d also suggest reach out to the support organizations in your community. For us, the Tuberous Sclerosis Alliance has been an invaluable resource. It’s how we found Dena! The Epilepsy Foundation has also been hugely helpful—they actually brought epilepsy training to our school. It takes a lot of coordination, but if you become your child’s advocate and educate yourself, then you can set yourself up for successful outcomes early on. I also try to compartmentalize: just focus on this year, this year’s team, this year’s plan…

Brynleigh’s the most loving, affectionate little girl. She’s strong, brave, and has accomplished so much despite what she’s up against. If we can find a cure for TSC in her lifetime, then I hope that one day she can be her own advocate and her own spokesperson. But in the meantime, with the help of IEPs, that person will be me.

Want to read more about Lauren and Brynleigh’s experience with IEPs? Check out her article in Perspective magazine, Tips to Ensure a Successful IEP Process

 For more information on parent’s rights and the IEP process, you can visit:

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