For many children with CHD, emotional reactions can feel intense, quick, or hard to settle—not because of behavior alone, but because of how the nervous system has developed over time.

Early risk factors, medical experiences, procedures, pain (and other life stressors) can shape how a child’s body responds to stress, touch, sound, and discomfort. Some children become more sensitive to their environment, while others may seem to shut down or withdraw.

This month, we’re focusing on how the brain, body, and sensory system work together, and how to support regulation in a way that matches your child’s nervous system.

Emotional regulation isn’t just about the brain —it’s also about the autonomic nervous system, which influences how the body responds to stress (fight, flight, freeze, or calm).

For many children with CHD:

• early medical experiences (especially those that involved pain) can make the nervous system more sensitive and reactive

• sensory input (noise, touch) may feel more intense for some; for others they may seem under responsive to discomfort or pain

• big emotions may show up unexpectedly or seem out of proportion

• regulation can take longer, especially when the body feels overwhelmed

For younger children:

• Sensory sensitivity may show up as clinginess, avoidance, or meltdowns

• Predictable routines and familiar environments help reduce overload

• Use calming input (rocking, deep pressure, quiet spaces) before expecting effective communication when upset; observe your child closely to see what works - they may not be able to tell you.

For school-age children:

• Busy environments (school, group settings) can overwhelm their system

• Some child will get "stuck" easily and struggle to be flexible and adjust

• Build in regular breaks, quiet time, or movement to reset

• Notice patterns—sensory overload can look like a "meltdown" but starts in the body. If you change their sensory input, what do you notice?

• Remember that weak self-regulation affects attention and learning. Is sensory overwhelm a concern in the classroom or during activities?

For teens and young adults:

• Sensory and emotional overload may show up as withdrawal, irritability, or fatigue. A teen who regulates all day will need to decompress once they are home. Do you see a different teen at home than they see at school?

• Self-awareness (“I need a break,” “this is too much right now”) is a key skill to build. Ask your teen what they need from you?

• Regulation often improves with planned downtime, structure, and control over the environment. Teens need time alone, and they need time with peers too.

When a child’s nervous system is overwhelmed, their emotional reactions are physiological. This means children often need support settling their bodies before they can think clearly or problem-solve.

These big emotions are temporary. They will fade.

The goal isn’t to say exactly the right thing, but to support your child through it.

• Start with noticing their body language, not words—your calm presence and tone help regulate first. This will send a message that you are a stable, strong presence and you can handle anything they are struggling with.

• Simple, supportive, validating language works well: “I’m here”, “We’ll figure this out”, "It's okay to be upset", "This is really hard", etc.

• Reducing sensory input (lower lights, quieter space) can help de-escalate. Make a space for "cool down". Imagine and create this together - what do they need in this special space (pillows, books, Legos, lava lamp, handheld cooling fan, squishy fidgets, headphones or music, weighted blanket, hammock, etc)?

• Some children need physical input to regulate, especially when activated. Do they need activity or exercise that requires exertion (climbing, jumping, running, biking, swinging)?

• Some things don't need to be discussed. Not every meltdown or episode of overwhelm needs to be a teachable moment.

• Give them permission to express "negative" emotions. They need to express their anger, fear, sadness. Guident them on what is appropriate. Help them see where there are boundaries: "It's okay if you yell, but name calling is not acceptable".

• When is the next time you can build a connection with your child ... a moment that shows your acceptance, just the way they are right now? Join them in their "world" with your undivided attention - with conversation or play.

Notes About the Newsletter: Each month’s newsletter highlights a few themes that commonly come up for families raising children with CHD. As your child grows and circumstances change, different topics may feel more or less relevant over time.

This newsletter is for educational purposes only and does not replace individualized medical or behavioral health care. For urgent concerns, contact your care team.