Living With a Urea Cycle DisorderHelp at School for Children with UCDs

Welcome to Your UCD at School Toolkit!

Here are several resources to help your family when it comes to managing a urea cycle disorder (UCD) at school. These resources include:

  • 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. This piece can be customized so you can teach people exactly what a UCD means for your child. In these resources, anything in [brackets] should be filled in with your information or deleted if it doesn't apply.
  • A guide to caring for someone with a UCD to help others understand your child's needs.
  • A sample email and customizable presentation to teach school staff about UCDs, to help you request a meeting to talk about your child's UCD and educate teachers, staff, and administration.
  • A resource for substitute teachers to tell them basic dos and don'ts.

Talking About Your UCD at School

Talking About Your UCD at School

Complete this worksheet with your child to help him or her practice what to say and do when tough questions or situations come up at school. Prepare your child with these practice scenarios about lunch time, recess, substitute teachers, and more.

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A Guide to Caring for Someone with a Urea Cycle Disorder (UCD)

A Guide to Caring for Someone with a Urea Cycle Disorder (UCD)

Fill out the information in this guide to help others understand your child's needs. It covers important rules to follow about diet, hydration, supplements, strenuous activities, and more. This guide also discusses other day-to-day needs, symptoms, and emergency situations. This resource is perfect to bring to school, a play date, or even to give to a baby sitter.

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Teaching School Staff About UCDs

Teaching School Staff About UCDs

Use this sample email and customizable presentation to help you educate teachers and school staff about your child and his or her UCD. Fill in anything that appears in [BRACKETS], or delete it if it doesn't apply to your child. If you do not have access to Microsoft PowerPoint® download Apache Open Office for free here and then download the presentation.

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A Quick Resource for Substitute Teachers

A Quick Resource for Substitute Teachers

Here is a resource for your child's substitute teacher, providing a summary of urea cycle disorders (UCDs). Also included are UCD tips covering diet, hydration, activity, emergency contact information, and more! Have your child bring this to school when there is a new staff member or substitute teacher, and ask your child's teacher or the school administration to keep a copy on file.

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Free government programs for children with UCDs

Want activities and resources to teach your child about UCDs?