Disclaimer: After venting about the dreaded IEP experience on Instagram, I received requests to blog about it. And I'm happy to share what I know (which isn't much at this point). Please realize that these are simply my thoughts on our experience and that each individual child, school system, and educational staff is different, so the IEP experience varies.
Let's start at the beginning. What is an IEP? IEP stands for Individualized Education Program (or Plan) and it is a document that any child receiving special education services in the public school system is required to have. The child is evaluated by the education staff, eligibility is determined, goals are set, services are provided, and the progress is measured. Then the whole process begins again and repeats throughout the child's educational career.
Josie has Chronic Lung Disease and due to the nature of her lung problems, sending her into a preschool environment at this point is not advantageous due to the germs and illness that circulate within a classroom. For those that argue that Josie will never build immunity if she's not exposed to germs, you are correct. But right now, due to the amount of damaged tissue in her lungs, her pulmonologist predicts that if she got bronchitis or other common childhood respiratory infections, she would likely require oxygen to breathe. However, he is optimistic that as Josie continues to grow, her lungs will get larger and she will acquire more healthy lung tissue, making the unhealthy tissue less substantial. So the reasoning is, why expose her to something right now that would require her being tethered to an oxygen tank (or worse), when we could wait a couple of years and she could endure the same illness with some rest and chicken noodle soup like any other kid? Make sense? Good.
Even though Josie isn't going into the preschool setting, her Down syndrome diagnosis makes her eligible to receive educational and therapy services in the home. This is why we began the IEP process. I contacted our local school system requesting a developmental consult and after faxing the necessary medical records, I was sent a Student Profile Questionnaire. It contained questions about her home environment, health history, cognitive development, behavior, speech/language skills, social skills, motor skills, self care skills, and sensory issues. I completed this questionnaire and the preschool teacher set up 2 appointments to come conduct standardized testing with Josie. The school Physical Therapist (PT), Occupational Therapist (OT), and Speech & Language Pathologist (SLP), all set up times to come and observe Josie.
For the most part, Josie was her friendly, cooperative self. However, on day 2 of her standardized testing, she decided she was going to be stubborn and defiant and she refused to answer a single question. The teacher asked her to point to letters on a page and Josie refused. Josie knows the alphabet forwards and backwards. She loves talking about letters and letter sounds and yet she just put a wall up and wanted nothing to do with the evaluation! I suggested the teacher use her alphabet train and have her identify the letter blocks but the teacher declined saying that the test was standardized and she had to use her materials and phrase the question the exact same way for every kid (insert mom frustration). Josie's attitude was so bad that day that the teacher asked to reschedule.
That's about when I lost my IEP composure. After the teacher left, I sent a frantic email to Josie's behavioral psychologist who conducts feeding therapy. I called my mother and commiserated over her IEP horror stories. I vented on Instagram. And then I did the smartest thing I'd done all month - I emailed one of the most innovative and gifted educators I know and I received some advice that I will carry with me throughout Josie's educational career...
...to be continued.