Aidan: A Heart Story
When Aidan was a young child, he was often frustrated and dysregulated. His parents struggled to understand the cause of his behavior. They hated seeing their child unhappy, but were unsure how to help him. Before he entered middle school, Aidan had a neurodevelopmental evaluation. Through this evaluation, Aidan and his family finally understood the nature of his difficulties. They were able to set up interventions that met his needs, and Aidan started thriving both at school and at home.
In this section
Aidan's first years
When Aidan's parents learned their baby had hypoplastic left heart syndrome (HLHS), they knew he had a difficult medical journey ahead of him. However, they did not fully expect his difficult developmental journey.
During his first years, Aidan's family supported him through multiple major surgeries, and ultimately a heart transplant.
They mourned when he suffered setbacks, including a stroke, and they celebrated with him when he started feeling better and gaining strength.
With his transplant behind him and his health on the upswing, Aidan's parents were looking forward to easier years.
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New challenges
Although life definitely improved after Aiden's health stabilized, his family faced new challenges.
Aidan struggled with attention, emotion regulation, and behavior, both at school and at home.
He often became frustrated, and sometimes acted out ways that were alarming and disruptive. He had meltdowns, yelling and screaming, and sometimes hitting his own head. He had trouble communicating what he was thinking and feeling, and Aidan's parents did not know what was going on.
Aidan's family tried to set limits and expectations and build a consistent home environment, but their behavior management strategies never seemed to work as well as they hoped.
At school, Aidan was having trouble learning and connecting with the other children. His behavior sometimes disrupted the class, and he was both distractible and inflexible. He seemed to have trouble understanding other people, and his family worried that he lacked empathy.
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An evaluation
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Aidan's family brought him to the Cardiac Neurodevelopmental Program for a neuropsychological evaluation when he was 11, before he entered middle school. Aidan and his parents spent two half-days with the evaluators, talking, completing forms, and participating in assessments.
A week later, Aidan's parents came to their feedback session, hoping to finally have some insight into Aidan's difficulties.
The evaluator explained that Aidan had a mild intellectual disability (ID). He had much more trouble than other kids his age with learning, understanding, and solving problems. HIs parents also learned that Aidan did not have autism spectrum disorder (ASD), which they had been considering as a possible explanation for his behavior.
A new perspective
Aidan's father said that receiving the diagnosis of ID was hard, but also felt "helpful and very comforting." Based on this information, Aidan's parents had new insight into the source of his volatility, confusion, and frustration.
With neuropsychological report in hand, Aidan's family advocated for more intense services at his school, and they modified his IEP to reflect his true needs.
At home, Aidan's parents were able to follow the evaluator's recommendations, and finally put into place behavior management strategies that worked.
Recognizing Aidan's stress and strong emotions, his parents asked the evaluator to recommend a kind of therapy that would be helpful for him. She directed them to a therapist who could meet his needs.
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Calm and growth
Once Aidan and his caregivers understood his needs, and once they had appropriate interventions in place, Aidan started to thrive.
He grew calmer and happier, and felt more successful at school. At home, he felt safe understanding what was expected of him, and knowing that he could meet the expectations. He stopped having meltdowns, and started having more fun.
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Aidan Now
Aidan is now a high school student, and is already thinking about jobs he might want to pursue as an adult. He has embraced his identity as a young person with a congenital heart defect, and is eager to share his story with others. He is actively seeking out a community of other teens with heart defects, so he can connect with more kids who understand his experiences.
Aidan now know who he is, and feels comfortable in his identity. With his family's encouragement, he is pursuing his passions, taking on new challenges, and looking forward to a very bright future.
Do you have a heart story that you want to share? We would love to hear it, and maybe we can even feature it here! Email CNPschedulingandquestions@childrens.harvard.edu
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.
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