Your life is a story of transition. You are always leaving one chapter behind while moving to the next. ~ Unknown
Recently, on behalf of my son, I participated in his very last IEP meeting. My role as a team member, parent, advocate, deaf-blind consultant, therapist, and administrator has come to an end. It’s the end of a chapter of our lives and I am filled with mixed emotions and bittersweet feelings.
Leaving the Educational System and Moving to Adult Services
As we began the meeting I was asked to sign the attendance sheet and initial that I had accepted and understood the procedural safeguards letter. While I did so, I thought to myself, “I could honestly wallpaper a complete room in my home with procedural safeguards letters.” I also reflected that this was the end of my son’s protection under state and federal special education laws, including the Individuals with Disabilities Education Act, known as IDEA 2004. The profound reality of leaving a system where he was entitled to educational services and entering a post-secondary world where he must meet eligibility requirements took my breath away. The only type of instructional system we had ever known was coming to an end.
The special education director, the case manager, and I took a minute to estimate how many IEPs Hunter had had. I calculated that it was close to 30. There were at least 17 yearly IEPs that began after his diagnosis at age 3, approximately five that followed evaluations and re-evaluations mandated by law, and an additional six or so related to major programming changes such as when he returned to our home school district after leaving an approved private school. Unsure of the exact number, I mentioned to the special ed director that I should go home and count them. With a perplexed look, she asked if I had I kept them all. Of course I had. I explained that the three to four boxes that line the back of my son’s closet hold, chronologically, not only every IEP document, but all of his educational records--evaluations, assessments, medical reports, and the many home-school communication journals I kept when he was young, before email was used to communicate with team members. It’s hard to imagine now, but those communication journals provided a consistent connection between me and Hunter’s team members that was essential to promoting his learning and development both at home and at school.
Learning the Value of IEP Meetings
Initially, like many parents, I loathed IEP meetings. It meant more work on my already full plate. To be honest, it was probably not until after at least my son’s third IEP that I even “got it” and began to understand the importance of this legal document. All I knew in those early years, was that once a year I had to go to a very intimidating meeting, try not to become emotional as I listened to what my son could not do, and sit for hours while someone read a 42- to 48-page document to me. I kid you not, my son’s shortest IEP was 42 pages and the longest was 48 pages. It was stressful and fatiguing. Sometimes it took me days to recuperate.
Luckily for me and my son, early on I had begun to tap into our state deaf-blind project and attended trainings the project offered on IEPs. Once, while I was trying hard to comprehend this foreign topic, the state deaf-blind project director explained it to me as follows (I paraphrase):
The IEP document should tell the story and goals of your son. The weaknesses that are discussed are to figure out his needs and required supports. Recognition of his strengths can be used to overcome obstacles and barriers. A parent should never look back except to see how far their child has come.
That was an “ah-ha” moment for me and from that point forward, the IEP became my ally and the driving force behind my son’s success. I will always be grateful to that director, because she gave me the insight I needed to approach my son’s IEP process in the most positive manner possible.
Throughout the years, especially around “IEP Time,” I often wondered, and at times even fantasized about how I would feel about Hunter’s last IEP meeting. Perhaps I would celebrate, shout from a mountaintop, raise a glass of champagne, or maybe even burn those boxes of records. But now that it has actually happened, I realize that I am not there yet and I am puzzled and surprised at my somewhat ambivalent response. I was not prepared for this sentiment at all.
As Hunter’s path of transition continues, however, we begin a new chapter. For me, it will likely involve starting to collect a new box of records. I only hope its contents will document a continued successful path for my son.