Updating My Daughter’s IEP as COVID-19 Guidelines Change

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by Jackie Babiarz |

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As a parent, I consider myself well informed about the school system. I was a high school teacher before I had kids, my oldest sister is an early childhood educator, and my middle sister is a school physical therapist. Both of my sisters have been instrumental in helping me to navigate the special education system with my 12-year-old daughter, Cammy, who has Rett syndrome.

In addition to them, I am fortunate to have numerous resources at my disposal. However, as the world keeps changing, I have to adapt and change Cammy’s individualized education program (IEP) as well. My sisters and I are learning how to do this together. I continue to share new strategies with them so that they can add to their special education resource toolbox.

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A couple weeks ago, COVID-19 mandates changed again here in Illinois. While the U.S. Centers for Disease Control and Prevention (CDC) recommend universal indoor masking for all students and school staff, a statewide executive order last August required masking in all schools serving students in prekindergarten through 12th grade.

Our school district was among 140 districts involved in a lawsuit over the state mandate. On Feb. 4, a judge ordered enforcement of the mandate to be halted. This meant that wearing masks in schools was now recommended, but not required.

This news shook me. Cammy is immunocompromised, and the characteristics of Rett syndrome make her very vulnerable to illnesses.

I sent an email to her teacher and nurse, expressing my concern about the change, and asking what we could do to protect Cammy as much as possible. A quick reply eased my worries. I requested an IEP meeting, and thanks to the power of Zoom, all participants were available within two days.

During the meeting, we agreed on several accommodations, including:

  • Per CDC guidelines, students and staff will maintain at least 3 feet of distance from Cammy.
  • She can leave and arrive in class early to avoid crowds in the hallways.
  • She will receive preferential seating in class and in the cafeteria while eating lunch.
  • Classrooms will have additional masks available.
  • All staff will wear a face covering when they’re within 6 feet of Cammy.

Documenting these accommodations in Cammy’s IEP safeguards her. Staff, including substitutes, must wear masks when they’re near Cammy. It is no longer a recommendation. I understand that this does not make her bulletproof, but I sleep better at night knowing that she’s vaccinated and boosted and that those around her at school will be wearing masks. I know that I have done everything I can to protect her.

As my oldest sister always says, “You don’t know what you don’t know.” And now I know about several additional accommodations that are important to include in Cammy’s IEP.

Note: Rett 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 Rett Syndrome News, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Rett syndrome.


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