Empowering Your Child’s Best Advocate: YOU

A young boy smiles, showing missing teeth.

I was an elementary school teacher. I had many children with special needs of varying abilities in my classrooms over the years.I was an elementary school administrator.I orchestrated and participated in hundreds of the special education meetings from “Child Study” through “Eligibility” to IEPs and 504 plans. I had done research in the field. I read case studies and special education journals frequently. As a teacher and administrator, I thought I made every decision with the child’s best interests in mind. I thought I helped parents of students with special needs feel at ease in the IEP meetings, classrooms, and school in general. Yet, I felt completely unprepared for the future when I learned that my second child had special needs. Because my son has an extremely rare condition named Kabuki Syndrome which features a “laundry list” in health ailments and developmental and cognitive issues, I found myself educating his doctors and teachers along the way.

I will never forget the first official IEP meeting for my son Sammy at the school district’s special education headquarters. This was the first time I sat in the “parent’s chair”, not the “teacher’s or “administrator’s chair” for such a meeting. As my son’s current functioning levels were explained, his needs discussed, goals set, and papers signed and shuffled, I found myself feeling very insecure. I found myself second guessing every decision that was just made. Did the “picture” the teachers and assessors just painted truly reflect Sammy? Did we design a plan that would help Sammy best succeed? Those questions and more swirled around in my head. To be completely honest, I was extremely nervous and anxious.

Again, I recalled my time as a classroom teacher and administrator. My questions about serving the needs of prior students and parents surfaced. When I was an administrator, did I properly explain everything to parents that they should know? Did I help provide to students what they really needed? Will the rest of my life be spent in a continuous battle to get Sammy what needs to be successful?

I didn’t have the answers to any of those questions at that moment, but I did know something to which I fervently clung. I am and will always be Sammy’s best advocate. No one could advocate for him like me. There is no better advocate for a child than her or his parent or guardian. Fortunately, for my son and me, I am an educator with extensive background and experiences in elementary and special education. I am well-aware this is a great advantage for my son and I am thankful. I am confident that if I don’t understand or simply don’t know about something related to my son’s educational plan and progress, I will find some way to learn it.

This leads to me to my latest pressing question: how do we truly empower parents who come to the IEP meeting without a background in education? If I was “shaking in my boots” at that first IEP meeting, how must most parents and guardians feel? I grapple with this question every time I attend a meeting on my son’s behalf. As an educator and former administrator, I believe it can be quite overwhelming and I am not merely speaking of the emotional and psychological elements, but the paperwork and educational jargon as well.

I needed a simple method to be and feel prepared for all special education meetings.I purport some basic organizing and preparing would help many parents and guardians feel better informed, more empowered, and truly enabled to advocate for their child.

If you have child with special needs, examine the following recommendations. If you are an educator, administrator or advocate, share the following recommendations with parents and guardians of children with special needs.

Four Important Recommendations for Parents/Guardians of Children With Special Needs

1. Organize! Organize! Organize!

Organize two binders for maintaining documentation.
a. health binder -insert a calendar in the front for marking illness, medical appointments, medication, and examining patterns.Depending upon your child’s needs, sharing knowledge of his or her health may be very important in educational planning and updating for the teachers.

b.education binder – for keeping all academic information related to special education including IEPs, home visit reports and other important materials. For filing ease, place the most recent paperwork on top of the previous. Insert a blank pad of paper in the interior pocket of the binder for note taking.Make sure a writing implement is always accessible to you in this binder.

c. Keep these binders in an easily accessible location in your home so that you can find them easily, use them to write down questions, and remind yourself of the goals everyone in your child’s educational life are working toward.

d. Simple tabbing with logical headings will suffice in the education binder, such as “eligibility information”, “progress reports”, “parental rights and responsibilities”, and “IEPs”.

e. Just entering the special education meeting with your binder in hand will make you feel more confident and prepared for the agenda.

f. Such preparation will appear to be a notation of a solid investment in your child’s education and that you care and take the team approach very seriously. It claims “you are a stakeholder” and expect to be treated with respect and dignity.

2. Request! Request! Request!

Request therapy providers to share any documents that present baseline data on typical development (i.e. a chart that delineates which speech sounds normally appear at what age).

3. Use! Use! Use!

Use parents resource centers for research and to find support groups. Find out the hours and locations. These resources are for you and typically are free. The time invested in resource centers and communicating with support groups will benefit you and your child two-fold.

Ask about government funded programs for your child. For example, the federal government funds an excellent books on tape program for visually impaired and physically handicapped persons as mentioned above.

4. Go! Go! Go!

Go to every meeting with your list of questions. Date and number each question and allow space for the responses from the education team. Keep this pad in the education binder for future reference and use.

Truthfully, the total cost for these four recommendations is under $5.00. It might be a powerful message if school districts were to provide parents and guardians the education binder at the very first meeting. Teachers could assist parents and guardians with the use and maintenance of the binder. We know parents and guardians leave every IEP meeting with a stack of papers that should be stored someplace. This method keeps the ‘paper trail” for the parents and guardians more organized from the start.I am well aware that a simple binder cannot fully prepare parents and guardians for all of the special education meetings in their future. I do strongly believe that being (and feeling) organized is a very important step in helping parents and guardians feel more empowered as their child’s best advocate.

About the Author: Dr. Shannon Melideo is an assistant professor in the School of Education and Human Services at Marymount University in Arlington, Virginia. She is currently the Education Department’s literacy specialist teaching undergraduate and graduate literacy methods courses. Dr. Melideo can be contacted via email:[email protected].

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