School emergency plans must include the needs of students with disabilities
My son's recent school lockdown was a frightening reminder
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Last Friday’s lockdown at my son’s high school brought the kind of phone call no parent wants to receive.
My 16-year-old son, Jake, who’s living with Prader-Willi syndrome (PWS), called to tell me he was outside by the football field in an equipment garage, and they were under lockdown because there was a report of a student with a gun in the school. He was safe, but he did not have his water bottle or cooling towel, and the temperature was above 90 F.
For many parents, those details might seem secondary during an emergency. For a parent of a child with PWS, they are anything but.
People with PWS can have difficulty regulating body temperature. Overheating can be dangerous, particularly when someone is outdoors or in a confined space. My son’s water bottle and cooling towel are not simply comfort items. They are part of the support that helps keep him safe.
As I listened to his voice, I experienced several emotions at once. I was relieved that he could call me. I was grateful that he was sheltered and following instructions. I was proud that he recognized what he needed and communicated it. At the same time, my mind was racing.
How warm was the garage? How long would he be there? Was there any way to get him water? How quickly could a manageable situation become a medical concern?
During a lockdown, school staff must make immediate decisions under pressure. Their first responsibility is protecting students from an unknown threat. I understand that, and I am thankful for every staff member who worked to keep students safe. But Friday also reminded me that emergency preparedness must include disability preparedness.
A safety plan cannot stop at getting every student behind a locked door. It must account for the students who need medication, mobility assistance, communication support, temperature regulation, access to water, or other individualized accommodations. Emergencies are unpredictable, but many disability-related needs are not. We already know they exist. Families and schools should not have to invent solutions in the middle of a crisis. Emergency plans should identify who is responsible for essential supplies, how staff can access a student’s health information, and what happens when a student is moved to an unexpected location. Backup water, cooling supplies, and other necessary items should be available in multiple areas when possible.
As my son and his aide called a couple times during the lockdown, I remained concerned for his safety, but the high temperature and poor ventilation were becoming a bigger concern.
When the lockdown ended, I felt enormous relief. Yet that relief did not erase the fear I felt as I imagined my son waiting in an equipment garage without the tools he normally uses to stay safe.
Fear doesn’t vanish when the lockdown ends
For Jake, the lockdown did not necessarily end when the doors reopened. Anxiety can linger, and perseveration kept pulling his thoughts back to what happened and when it might happen again. Repeated questions and a heightened need for reassurance continued throughout the weekend. The emotional impact of a lockdown can remain long after the immediate danger has passed.
Friday showed me how quickly ordinary routines can disappear. It also reminded me how important it is for our children to understand their bodies, recognize their needs, and speak up.
My son did exactly that. He called. He explained where he was. He told me what he did not have. I am proud of him. And I am left with a question every school community should consider: When an emergency plan protects the crowd, does it also protect each individual child’s medical needs?
I am deeply thankful that everyone was safe and that the lockdown ended without harm. Now, as we move forward, I am thinking about how I can help my son feel more prepared if this happens again. I cannot remove every uncertainty, but I can give him tools, reassurance, and a plan so he feels safer and more confident if another emergency occurs.
Note: Prader-Willi Syndrome News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Prader-Willi Syndrome News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Prader-Willi syndrome.
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