Transitioning to Adulthood: When Your Child with a Rare or Undiagnosed Condition Grows Up

When a child with a rare or undiagnosed condition begins the journey from adolescence to adulthood, the child and their parents or caregivers face new challenges and opportunities. It’s a pivotal transition marked by a shift in care, burgeoning independence, and the onset of adult responsibilities. With knowledge and foresight, families can chart this complex terrain with unwavering confidence and robust support.

As your child approaches adulthood, here's what you can expect and how to support them during this transition.

Physical Changes

• Puberty may be delayed or happen differently than typical peers
• Ongoing medical needs like medications, therapy, or surgeries
• New accessibility needs as their body grows
• Working with doctors to transition care from pediatric to adult providers

Mental and Emotional Changes

• A desire for more independence and autonomy
• Questions about their identity and future
• Concerns about relationships, school, and career
• Anxieties about managing their condition as an adult
• Confidence issues if abilities differ from peers

Social Changes

• Expanding social circles and relationships
• Learning to self-advocate for needs
• Navigating college or vocational programs
• Entering the workforce and managing disabilities
• Pursuing interests and hobbies they enjoy

How to Support Your Child's Transition

• Foster independence appropriate to their abilities
• Discuss future plans honestly but positively
• Connect them to role models or mentors
• Look into vocational rehabilitation services
• Ensure health insurance coverage into adulthood
• Explore supported employment and independent living options
• Celebrate their successes and growth

Primary Challenges and Considerations

Children with rare and undiagnosed conditions often experience specialized care tailored to their unique needs. Critical components to consider during this transition as they mature include healthcare management and social development. 

The change from pediatric to adult healthcare can be daunting. Parents and caregivers should anticipate and plan for these transitions, focusing on:

• Understanding the Adult Healthcare System: Gaining insights into how adult care differs from pediatric care.

• Finding Specialized Care: Identifying healthcare professionals experienced in your child’s condition or situation.

• Health Insurance: Navigating the complexities of health insurance and coverage for ongoing treatment and care.

Adaptation and Self-Management

For your child, learning to manage their health, including medication, appointments, and emergency care, is vital to this journey. Resources like KidsHealth provide guides and information on fostering independence in healthcare management. 

• Social Development: Social skills, relationships, and self-esteem are crucial to your child’s ability to adapt to adulthood. Encouraging social interactions and building a support network of peers and mentors can enhance their social development.

• Education and Career Planning: Career and education planning are essential, especially for children with rare and undiagnosed conditions. Tailoring education and career paths that are considerate of their health and abilities can lead to a fulfilling adult life.

• Support Networks and Resources:  Building support networks is crucial to ease the transition. These networks can include healthcare providers, peers undergoing similar experiences, and organizations dedicated to providing resources and support. The National Organization for Rare Disorders (NORD) is a valuable platform for connection with support networks. These resources can provide an excellent opportunity to connect with parents and caregivers helping their children transition.

• Legal and Financial Planning: Entering adulthood involves legal and financial planning to protect your child’s rights and financial security. Legal aid, special needs trusts, and government benefits are critical elements to explore.

Additional resources include the Center for Parent Information and Resources and Got Transition, which provide comprehensive resources to make the transition smooth. 

Delivering Support and Hope 

The transition to adulthood can be daunting, but with open communication, careful planning, and ongoing support, children with rare conditions can thrive as adults. Reach out to their medical team, therapists, school counselors, and support groups to help make this significant life transition smooth and successful.

And remember, you don't have to go on this journey alone. It’s easy to feel adrift and alone, but connecting with others on a similar journey can offer words of encouragement and help you facilitate a smooth transition for your child.

The dedicated team at TGen’s Center for Rare Childhood Disorders and others continue their groundbreaking research to find answers and develop treatments. Through the generosity of donors, the Center provides genomic testing for families at no charge and continues its work to provide solutions and cures to families and their children.