How To

Our common bond as parents, no matter our educational level, is that we all walk into individual education program (IEP) meetings wondering if we are going to fight for and get what our child needs in order to succeed that school year. “Fight” is not an adversarial word here. It is a strong word meant to convey just how necessary our voice, reasoning, and ability are to helping others understand our child.

Planning for IEP meetings requires an array of tools, including research findings, trends in current practice, and emerging concepts and ideas, some of which may not yet have a full research basis. As parents, we must sift through the available information to select and apply what best fits our child’s needs. Ultimately, a child may thrive using a combination of evidence-based, unresearched, and clinical methods. We as parents can advocate for our child based on our findings if we know where and how to look.

Research is the powerful tool we can use in that fight and one that is likely to bolster our chances of success. So, how do you learn to find and use research effectively?

Become a Researcher

From the time my son was 3 years old until he turned 22, I attended approximately 24 IEP meetings. Some were contested. Some resulted in “no immediate signature” because I had to think about what was being proposed. Some necessitated visiting other classrooms, schools, and programs for best-fit decisions for my son. But for the most part, I had some pretty good IEP meetings. I accomplished this by taking on the role of researcher.

Collect Data

I began by collecting data. In research terminology, my direct observations of this case study of one, my son, led to continuous data collection. I monitored his behaviors and recorded which factors were involved in behavioral issues, fear, lack of cooperation, invalid attempts at behavioral modification, valid reward systems, play, habits, schedule, socialization, and eating behaviors, as well as reactions to those interacting with him in private therapies, of which there were several over the years.

These examples illustrate how I used the data I collected to get positive results:

• When the school called to tell me that my son refused to go into the bathroom to use it or wash his hands, screaming “no,” and that they wanted to put a hygiene goal in his IEP, I ask questions based on my observational data: “Is the soap solid, liquid, or foam? Is there air freshener or a scented wick in the bathroom?”
  The issue was not my son’s behavior; it was sensory overload because of the soap and deodorizer in the school bathroom.
   
• A second example involved another call from the school to say that my son had become extremely combative and refused to do crafts. Once again I put on my researcher hat to ask questions: “What do you mean by the word combative? When did this happen? What is the craft project?”
  As it turned out, he was frustrated because no one listened to the memorized scripts he used to communicate and because his fine motor skills were not developed enough to do the project. The smell of the glue also caused sensory overload. At the next IEP meeting, I produced that data and got positive results. His occupational therapist continued to work with him to develop his fine motor skills. We gave his speech therapist a list of phrases from his “Thomas the Tank Engine” and Disney scripts to share with the lead, art, and music teachers so they could understand him. And no one made him do craft projects like the ones that caused problems. His oppositional behavior ceased.

Use Direct Observation

I visited my son’s school to observe how staff interacted. You can do that too: ask to sit in on a class. Volunteer in the school or become a part of the school PTA. Bring your observations to your next IEP meeting. In visiting schools, I learned more about the one-on-one staff and asked for further training for them before signing the IEP when necessary.

Those observations enabled me to reframe what success meant for him, instead of letting the school define it. I used the data I collected, research, and his therapists’ data and asked to be involved in any research protocols the schools participated in if they were a good fit.

Keep All of Your Data

When my son was placed in the wrong school, I collected all the data, organizing worksheets, notes, his previous IEP, along with additional materials, into binders for one year in order to show he had regressed. It was all the proof necessary for him to be allowed to transfer schools. Lesson: keep everything. You never know when you are going to need it.

Keep Up with the Relevant Research (and Use It)

Researchers need to understand the existing research in their field. So do we as parents, beginning with understanding the research language. If you do not know, for example, the difference between qualitative and quantitative methods or between double-blind study and case study or what sample size bias means, look it up. Look up anything you don’t understand as you are reading.

Start with a research study’s introduction, not the abstract, so you understand the background information.

Don’t rely on one article to prove your point. Read a few articles, at least three, that all draw the same conclusions. Ask your therapists about various approaches to help your child excel. If you have private therapists, make them your go-to persons for research recommendations since they are not employed by your school system and are not limited by the school system in what they can recommend.

The OAR publication, “A Parent’s Guide to Research,” was not yet created when I was in the thick of my son’s IEP meetings, but I sure wish it had been: it is a gem of a resource.

Bring copies of the research articles you are referencing with you to the IEP meeting. Circulate them and then lead the discussion, asking for what you want and noting how the research articles make that request valid. If the committee does not accept your research articles for any reason (sample size is too small; journal where it is published is not considered reputable; the experiment or result were not replicated by any other researchers; the body of knowledge regarding your example is scarce), do not get upset. Rather, note the potential and suggest using your recommendation as a trial run to see if it works.

Beyond IEP meetings, I offered the findings from my research to help my son’s schools in any way they found useful. Generally, teachers and therapists were caring and helpful and appreciated my time and effort to inform them. I also befriended and truly loved important people in my son’s schools: parents, teachers, coaches, therapists, transition coordinators, administrators, and others, and emailed them or spoke in person about new research findings or programs throughout the year.

Look for Innovation

I brought in more and more therapies of all kinds, and I rejected standard ways of thinking at that time:

• “Your son will never tie his shoes.” He did tie his shoes eventually.
• “Your son will never find work” He is now gainfully employed.
• “Your son will never read.” He taught himself to read using the old KidsSongs and Disney videos because they were subtitled.

Today, my son is employed part-time at a grocery store he loves and he excels at his job. While not every IEP is directly responsible for his success, knowing what to let go of and what to fight for was essential. Each relevant piece of research is a brick to construct one IEP goal at a time, one year at a time.

Linda C. Campanelli, Ph.D., is a health educator and professional speaker on issues of health, wellness, and gerontology. She is a part-time faculty member at the Milken Institute School of Public Health in the Department of Exercise and Nutrition Sciences at George Washington University. She serves on the Community Services Board  Medicaid Waiver selection committees for Arlington/Alexandria and Fairfax Counties. Dr. Campanelli ran the first OAR Marine Corps marathon and was the featured “poster family” with her son, Nicholas. She is a certified yoga instructor, specializing in special needs adaptive yoga and trauma-informed yoga.