Tips for Educators of Children With Sanfilippo Syndrome

Emily Malcolm, PhD avatar

by Emily Malcolm, PhD |

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Children with special needs can bring certain challenges for caregivers and educators. Young patients with Sanfilippo syndrome face unique problems that caregivers should discuss with daycares and schools to ensure that the children receive the specialized support and education they need.

Building an individualized education plan

An individualized education plan for a child with special needs is developed between parents and the child’s school, and includes realistic goals with input from healthcare teams. Children with Sanfilippo may have difficulties hearing and seeing, as well as bone abnormalities that affect play and physical education. Teachers need to plan accommodations for these concerns, and make sure that the child’s needs can be met in the classroom.

Remembering that Sanfilippo causes regression

Sanfilippo syndrome causes progressive damage to the brain. As the disease progresses, mental abilities and behavior may regress. Skills that the child developed in previous months or years may be lost so teachers need to set up a plan to address this regression in the classroom.

Ensuring inclusion

Socialization is an important part of every child’s development. However, parents and educators must determine at what point the child would be better served by home care or education. This is a personal choice for parents.

Assessing physical ability

Educators need to make accommodations for changes in physical ability because Sanfilippo syndrome is a progressive disease. A patient’s physical ability will depend on the stage of disease they’re in. Some children may start the school year walking unaided but may need accommodation by the end of the term.

Accommodating communication issues

Some children with Sanfilippo syndrome are non-verbal, so they may need augmentative communication devices to communicate. Teachers may have to alter their teaching plans to include these devices, and counsel other students in the class on how to communicate with a non-verbal classmate.

Dealing with behavioral problems

Some patients with Sanfilippo may have behavioral issues such as aggression and hyperactivity. Discuss with parents what strategies they use for problem behaviors, and determine what approach will be used in the classroom.


Last updated: March 15, 2020


Sanfilippo 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.