Behavior Supports for Young Children with a CHD

In the United States, young children (ages 0, 1, 2) with developmental risks can receive free services through Early Intervention (EI).  Young children with heart defects almost always qualify for EI. Doctors should refer all young children with heart defects to EI.  Families can also refer their own child, by calling or writing to their local EI program.   

EI providers can help teach emotion regulation, and can help parents to manage challenging behaviors by: 

• Teaching parents activities and routines that promote development 

• Working with a child in their home or daycare 

• Offering a playgroup with other young children 

• Physical therapy (PT) 

• Occupational therapy (OT) 

• Speech and language therapy 

• Applied behavior analysis (ABA)  

Families should always tell their EI coordinator if they are concerned about how a child is thinking, feeling, or behaving.  The EI team can help assess any changes, and design an appropriate intervention. 

In the United States, young children (ages 3, 4, 5) with disabilities often qualify for free Special Education through their school district. Before a young child with a heart defect turns 3, doctors should refer the child for a Special Education eligibility evaluation through their school district. Families can also refer their own preschool-age child for an evaluation by calling or writing to their school district main office. 

School districts will evaluate a child for Special Education eligibility starting when the child is age 2 years, 9 months. Families should tell the school district evaluators if they are worried about how a child feels, thinks, or behaves. 

Special Education services can teach emotion regulation and behavior strategies.  Through Special Education, young children can receive: 

• Public preschool 

• Physical Therapy 

• Occupational Therapy 

• Speech and language therapy 

• Applied behavior analysis (ABA) 

• Social skills instruction 

• Counseling with a psychologist or social worker 

• Home services 

Each child’s Special Education plan is written to meet their unique needs. 

Many communities have therapists who are trained to help young children cope with big thoughts and feelings.  Therapists can help children feel more relaxed and in control, even when they are coping with the challenges of chronic illness. Therapy (or “psychotherapy”) is a powerful tool to help children and families: 

• Understand themselves 

• Manage thoughts and feelings 

• Learn coping strategies  

Therapy can be provided by a psychiatrist, psychiatric nurse, psychologist, social worker, or mental health counselor. It can be in a hospital, school, or private practice. Many therapists offer remote meetings through telehealth. 

Families can find a therapist by asking their doctor or insurance company.  They can also look online for therapists in their area. Most insurance plans pay for therapy for young children. 

It is important to find a therapist who fits well with a family’s goals and needs. Sometimes families try several therapists before they find one who is a good fit. When finding a therapist for a young child, parents may want to ask: 

• What is your experience with children this age? 

• Do you have experience with children with similar diagnoses? 

• What type of therapy do you use? 

• What goals would you have for my child? 

• How will your treatment help my child reach these goals? 

• How will you tell if my child is reaching the goals? 

There are different kinds of therapy. Some therapists use just one type of therapy. Other therapists use a combination of types. These five types of therapy are helpful for many young children with congenital heart defects: 

Exposure therapy helps children to overcome a pattern of fear or avoidance.  They learn to tolerate something they are scared of little by little.  

Exposure therapy is effective in treating anxiety, post-traumatic stress disorder (PTSD), panic disorder, and specific phobia.  

Family therapy is a treatment for the whole family system, including the young child.  

Through therapy, family members learn to improve relationships with one another. They learn coping strategies so they can manage behavior challenges, trauma, and illness.   

Any combination of family members can participate in family therapy.  

PCIT is a treatment for parents and their young children.  Usually, families participate in PCIT when a child has problems with their behavior.  

In PCIT, parents learn to: 

1. Create a warm relationship with their child 

2. Encourage wanted behaviors 

3. Reduce unwanted behaviors 

PCIT is used with children ages 2-7 and their primary caregivers.  

Parent guidance is a treatment for parents to help them in managing their child’s challenges.  

Through parent guidance, therapists can help with: 

• Unwanted or unsafe behaviors 

• Family relationships 

• Coping with the child’s illness 

• Mental health  

• Social problems 

• Learning problems 

• A family history of trauma 

• Grief  

Parent guidance is often most effective when the child also receives their own therapy.

Play therapy helps children to express their thoughts and feelings through games and activities. Parents often participate in play therapy with their children. 

During play therapy, children may: 

• play with toys 

• make art 

• play games 

Play therapy can treat trauma, anxiety, and aggression. It can be a good choice for children who have trouble communicating with language.  

ABA is a therapy that can help children learn knowledge, skills, and behavior.    

An ABA therapist can help understand when or how a child is acting a certain way.   

They watch and notice: 

• What happens before the behavior 

• What happens after the behavior 

• How this setting makes the behavior likely to occur 

ABA therapists work with each family and child to identify their strengths and goals.  They design teaching programs to help a child to make meaningful progress.   

ABA therapists break up each skill into tiny steps, so that they can teach the skills little by little.  Using positive reinforcements, ABA therapists reward children when they take steps towards their goals.  Through this process, children gradually gain new skills and knowledge. 

ABA can help many young children with ASD to manage their behavior, and learn new skills. 

Through ABA, children can often learn how to: 

• Communicate effectively 

• Follow routines 

• Play with other people 

• Show their feelings in an expected way 

• Be gentle with people, animals, and objects 

• Participate in daily tasks 

When your child is in the throes of emotional dysregulation, it may be hard to see beyond the moment. 

However, it is important to remember that all children can get better at managing emotions.  With support and intervention, things can get much easier.

This content was reviewed by a psychologist at Boston Children's Hospital.

Developmental care is best when it is local. Families local to Boston can receive care from the Cardiac Neurodevelopmental Program (CNP). Families from other regions can use the link below to find their local care team.