BY DR. SHANNON MELIDEO
As an elementary school teacher and school administrator, I had many children with special needs of varying abilities in my classrooms over the years and orchestrated hundreds of the special education meetings. 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, 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 to succeed? Will the rest of my life be spent in a continuous battle to get Sammy what he needs to be successful? Those questions and more swirled around in my head.
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.
This leads me to my latest pressing question: how do we truly empower parents who come to the IEP meeting without a background in education? 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.
If you have a child with special needs, examine the following recommendations:
ORGANIZE! ORGANIZE! ORGANIZE!
Organize two binders for maintaining documentation: Firstly, a health binder containing 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.
Secondly, an 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.
Simple tabbing with logical headings will suffice in the education binder, such as “eligibility information”, “progress reports”, “parental rights and responsibilities”, and “IEPs”.
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). Request information about resource centers, support groups, specialized playgrounds, and membership in national organizations. Ask about government funded and non-government funded programs for your child and family as well. Use parents resource centers for research and to find support groups. 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.
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.
Courtesy of Parenting Special Needs Magazine, www.parentingspecialneeds.org.