What you need to know
It is important to have HIGH LEARNING EXPECTATIONS for children who have Urea Cycle Disorders. Encourage use of the core educational curriculum and modify it in order to meet the individual needs of the child.
Many children with UCD’s have no intellectual disability. It is important to have high expectations for all children who have UCDs.
- A child with a UCD may have developmental delays or cognitive deficits due to higher than normal levels of ammonia in the brain
- They may have had a hyperammonemic episode earlier in life
- They may have ongoing problems with chronic or occasional high ammonia levels
- The learning issues may become more apparent if the child’s ammonia level rises.
- Most children regain prior levels of function after a hyperammonemic episode.
- Specific challenge areas
- Deficits in working memory, attention and fine motor coordination.
- Many children with UCDs take longer to develop social and self-care skills.
- Your student may have difficulty in areas that are different than what is shown here
What you can do
- Ask the parents about concerns about their child’s academic performance
- Make sure that the child receives a developmental evaluation when appropriate
- If there is regression in a child’s abilities, discuss this with the child’s parents
You may want additional information about your child’s disability, early intervention, school services, therapy, local policies, transportation, and much more. Every state in the USA has at least one Parent Training and Information Center (PTI) to offer families just this kind of information. To find your state’s center, go to the Center for Parent Information and Resources.