Today is our IEP meeting with the BOE. Perhaps the only organization using more acronyms than the BOE (Board Of Education) are Survivalists. How and why do I even know about such a group, you might ask? Because my husband, in his thorough research for his almost finished YA novel (it is so good, so wonderfully written, so exciting, it will turn YA literature on its head) has told me all about them. Survivalists or Preppers as they are also known, are preparing for the worst. Don’t ask me anything more because that is the extent of my knowledge regarding Survivalists. However I am a bit chagrined that the name “Survivalist” has been taken by this group as it seems an appropriate name for our children on the spectrum, though if they rejected it, I suggest we parents adopt it.
But I digress… this afternoon we have to go to the BOE and meet with three or four members of their staff to go over Emma’s IEP (individualized education program) mandated by the IDEA (Individuals with Disabilities Education Act). The point of the IEP is to help teachers and related service providers understand the specific issues, challenges and strengths of each specific child, with specific written goals for each and every child with a disability.
This is how the NYC DOE (Department Of Education) describes the IEP: “An Individualized Educational Program (IEP) describes the special education and related services specifically designed to meet the unique educational needs of a student with a disability. An IEP is the guiding document for a student’s educational program. It includes all of the goals, objectives, present levels of performance and related services that are recommended for the student.”
The first time I went to such a meeting, I was very excited, assumed the BOE cared about my daughter and her educational needs, wanted what was best for her, would urge for the best possible services, would work with me to get those services, suggest the most appropriate placements, write up a detailed and suitable IEP for her, etc. To say that I was disappointed does not in any way express what actually transpired. I left that first meeting surprised by my naivety, realized that of course this was a huge bureaucracy, bound by law to write an IEP, underfunded, understaffed doing the best they could with limited resources in a very imperfect world. In addition to all of that, one sits at an oval table with complete strangers most of whom have never met Emma. One person at the meeting will have done an assessment of Emma for 30 minutes, several months earlier. Emma will have been one of hundreds of children they saw. From that 30 minute “assessment” a report will have been written and all parties from the BOE will have that report in front of them, which they will refer to during our meeting. This is a sample from last year’s report: “Emma is minimally verbal, spoke in single word utterances, or short, attenuated sentences for the most part, was able to repeat simple phrases heard, and was echolalic.”
When I read that report last year, not only did I not recognize Emma, but I wept for this child that I did not know.
During the IEP meeting the staff from the BOE will not use the words “sensory issues” in fact, the word “sensory” will not be uttered in any context. Nothing will be mentioned about the necessity of having a sensory diet, that in order to focus and attend to academic work Emma will need certain sensory supports. Richard and I will mention these things. We will insist that they be included in her IEP. We will go on at length regarding her need to be allowed a break so that she can move between tasks, we will insist that a compression vest, a slanted writing board and various other sensory aids be added to the report. To be blunt – we will be a pain in the BOE’s ass. They will be relieved to see us leave. This is not our intention. Our intention, our sole purpose during this meeting is to ensure an accurate and appropriate set of goals are written for our daughter. Even if no one from the BOE ever reads them again until our next meeting next year, we will leave knowing that we did our best for our daughter.
For more on Emma’s journey through a childhood of autism, go to: Emma’s Hope Book
