Help at School for Children With Urea Cycle Disorders
As a parent or caregiver of a child living with a urea cycle disorder (UCD), you want to do everything you can to help manage their disease, both at home and in the classroom. Here are several resources with tips and information to support your child at school, including:
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A worksheet for talking about UCDs at school to help your child practice what to say and do if tough situations come up at school.
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A downloadable guide to caring for someone with a UCD to help others understand your child’s needs.
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A sample email to help you request a meeting and a customizable presentation to teach school staff about UCDs.
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A resource for substitute teachers to explain the basic do’s and don’t’s of helping manage your child’s UCD at school.
Educating Teachers and Staff About Urea Cycle Disorders
Teachers and other education professionals are an important part of your child’s school experience. They can also become a valuable part of his or her regular care team. Taking the time to educate teachers, staff, and administration about UCDs can make managing a UCD at school much easier for everyone. As a parent or caregiver, let them know what a UCD is, how it’s managed, and how to assist you and your child during an emergency. Here are some helpful tools.
You can use this sample email or this customizable presentation to educate teachers and staff.
The customizable presentation lets you provide a more complete and personalized picture of your child to the school. You can add photos of your child, list their favorite movies and books, add fun facts, and more to help you educate teachers and school staff about your child and their UCD. Fill in anything that appears in [BRACKETS], or delete it if it doesn’t apply to your child.
A quick resource to educate new and substitute teachers
Here is a resource for your child’s substitute teacher providing a summary of UCDs. Also included are UCD tips covering diet, hydration, activity, emergency contact information, and more. Bring this in at the beginning of the school year to help educate the school staff. Ask your child’s teacher or the staff to keep a copy on file and share it with substitute teachers who may fill in when the regular teacher is away.