Those of you who follow the Lauren's Hope blog regularly (and who doesn't?) may recall that I shared a personal story earlier this summer when my 9-year-old son, Will, was diagnosed with Severe Feeding Aversion (that's him, at left, in the hospital) and underwent surgery to place a Microvasive G-Tube. This feeding tube works by way of a port on his abdomen, allowing us to give him all the nutrition he needs while he undergoes long-term feeding aversion therapy, a form of occupational therapy that addresses the behavioral, sensory (texture, smell, temperature, etc.), social, cognitive, and OCD (obsessive-compulsive disorder) issues surrounding feeding.
When your child has health concerns, special needs, learning challenges, or any other condition or diagnosis that requires special accommodations, assistance, or awareness at school, there’s paperwork involved. And meetings. And then typically more paperwork and more meetings. But when you’re new to the diagnosis, sometimes, you simply don’t even know what to ask for. Here’s a little help getting started, from a mom who’s been there.
Whether you're cheering or groaning over the end of the school year, it's here, and for parents of children with chronic health conditions or special needs (as, let's face it, with everything else for us), there's extra work to do. As the mom of a third grader with severe, nonverbal autism and the mom of a first grader with a chocolate allergy, I'm not just wrapping up the year and looking forward to summer vacation. I'm doing year-end IEP meetings and coordinating with summer camp personnel to make appropriate arrangements for their care all summer long. Don't get me wrong. We have a healthy dose of FUN planned for the summer, but making that happen ... well, it just takes a bit more planning when you're a special-needs parent.
For many children and teens, going back to school or heading to "Meet The Teacher" events is a bit intimidating and overwhelming. Kids feel nervous or anxious about a new school year, and for shy children in particular, those first few weeks of learning new names, places, and people can be truly challenging. For children with health care concerns such as Type 1 Diabetes, food allergies, asthma, or chronic illness, this can be harder, as even confident teens are often uncomfortable simply walking up to a new teacher and saying, "Hi. My name is Sally, and I have a peanut allergy." That's not the first conversation they want to have, even though it's such an important topic. They don't want to be defined by their diagnoses or thought of as, "The Diabetic Kid." Their health care status may not be information they want to share in front of other people right away, but they do need to communicate it to the teacher.