Many children with Sanfilippo syndrome display behavioral problems similar to children with autism spectrum disorders. Children can hurt themselves by doing things like banging their head against a wall, or try to harm others by biting or hitting them.
Parents and caregivers can feel out of their depth trying to deal with these behaviors. In addition to working with a behavioral therapist, here are some tips that may be of help:
Try to identify what triggers the behavior
Triggers could be new and unfamiliar surroundings, or stressful situations. Children with Sanfilippo syndrome have difficulty communicating what it is that makes them anxious or stressful. Keeping a journal or logbook may help parents and caregivers to identify stressors that trigger aggressive behavior.
Once identified, you can work on either shielding your child from the stressor or helping them become accustomed to it.
Many outbursts of aggression are triggered by stress. Getting stressed yourself or raising your voice can exacerbate the situation. Try to stay calm and to speak in simple, clear sentences.
If your child is non-verbal, try to use times outside of outbursts to develop non-verbal communication. Parents and children may need to work with a speech therapist to learn healthy and effective ways of exchanging thoughts or voicing needs without speaking.
A goal is that children be able to communicate when they are stressed or upset, possibly without resorting to aggression.
Move your child to a safer space
If your child begins a tantrum or engaging in actions that risk harm, you may need to move them away from walls, sharp corners, and breakable objects to ensure they don’t get hurt.
Once you start noticing what makes your child upset or frustrated, you may be able to focus their attention away from these triggers. If a toy breaks, for example, let them help you fix it or move it away from them. For some children, establishing a “safe space” that they can go to when they are stressed can help in itself. This could be a quiet room or under a blanket or plushy, provided it gives your child a place to feel safe.
Work on improving communication
Current theories on aggressive behaviors suggest they are a way for your child to communicate moments when they are unhappy, stressed, or anxious. Working with your child and your child’s therapist, you may be able to teach other, more positive ways of communication.
Last updated: Nov. 15, 2019
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.