If you are the parent of a child with a rare disease such as adrenoleukodystrophy (ALD), managing your child’s schooling and their disease can be challenging but can done well with some planning.
Here are a few tips that may help:
File a treatment plan with the school
A treatment plan contains information about your child’s disease, his or her treatments, any side effects the school should be aware of, and a list of medications with dosage information and when your child should take them.
Make sure you update the treatment plan after each doctor’s visit, whether or not it has changed. Also, make sure that the school nurse is aware of the plan and can administer any medication. Ensure that all contact phone numbers are up-to-date.
Some children with ALD experience seizures, so make sure that you have a plan with the school for what to do if your child has a seizure at school.
Inform teachers of any restrictions
Each child is unique. Talk with your child’s doctor about any restrictions in diet, exercise, or class times for your child.
Some children may have difficulty with balance and experience clumsiness. This may make sports or physical education classes more difficult or even dangerous.
Many children experience fatigue as a result of the disease. In such cases, they may need half-days of school or breaks during classes.
Discuss with your child’s doctor the activities they should and should not be allowed to do, and talk with your child’s school about any alternate arrangements that are needed.
Ensure special accommodations are in place
If your child has difficulty walking between classes in the time available, discuss rearranging their schedule with the school, or ensure accessibility accommodations. The school may have elevators that allow your child to avoid stairs. If your child cannot carry their books or needs extra time to move between classes, discuss what accommodations the school can make.
Many children with ALD experience behavioral problems, which may include aggressive behaviors. Discuss classroom discipline strategies with the school.
On days when your child needs to stay home from school, make sure that you have a plan in place with the school for getting and handing in homework.
Discuss your child’s potential need for an IEP
Depending on the situation, your child may need an individualized education plan (IEP). An IEP lays out a plan for special education instruction, as well as the supports and services needed to ensure your child’s progress and success in school. Review and update the plan frequently with the teachers.
Because ALD is a progressive disease, your child’s symptoms are likely to worsen with time. Make sure that you are in frequent discussions with their school so that you’re aware of changes observed in your child’s symptoms and behavior. This way you can decide, together with the school, the best strategy for your child.
Last updated: April 7, 2020
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Adrenoleukodystrophy 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.
