This family drops the disability 'to do' list and loves life

Summary

Donna Cappelli shares the challenges and joys of raising her son, Julian, who has cerebral palsy. Despite his physical and sensory struggles, including uncontrolled movements and hearing issues, Julian maintains a positive outlook and a great sense of humor. Donna emphasizes the importance of focusing on Julian's happiness and well-being rather than solely on therapies or progress. She discusses the difficulty of balancing her professional life as a pharmacist with caregiving, and how supporting Julian’s interests, like reading and soccer, helps him cope. The conversation highlights themes of acceptance, resilience, and the complexity of living with a disability.

Takeaways

• 😀 Julian has cerebral palsy, affecting his body and movement, making daily tasks a struggle.
• 😀 Despite his physical challenges, Julian maintains a positive and enthusiastic personality.
• 😀 Donna emphasizes the importance of living life normally, focusing on Julian's interests rather than just his medical treatments.
• 😀 Julian’s therapies, such as physiotherapy and occupational therapy, are not focused on improving independence but on providing comfort and relaxation.
• 😀 Donna finds it exhausting to constantly relive what Julian can't do, preferring to focus on his abilities and joy.
• 😀 Sleep is a significant challenge for Donna, especially when Julian is going through growth spurts, which disrupts her rest.
• 😀 Donna’s work as a pharmacist was stressful, especially when balancing work with Julian’s health needs. She now works part-time as her husband's assistant.
• 😀 Julian enjoys reading soccer books and watching soccer, using these hobbies to bring comfort and distraction.
• 😀 Julian finds high school difficult, particularly in meeting new people and adapting to various changes in his environment.
• 😀 Julian advises other children with disabilities to find activities they enjoy to help manage loneliness and improve their well-being.
• 😀 Being around peers with different disabilities has taught Julian that it is okay to be different, although he has mixed feelings about it at times.

Q & A

What is Julian's main condition, and how does it affect him?

Julian has cerebral palsy, which causes damage to his brain. This affects his body physically, making it difficult for him to control his movements. He also has a hearing disorder and experiences uncontrolled movements, making daily tasks like attending school and interacting with others a struggle.

What challenges does Julian face during a typical school day?

Julian faces several challenges during school, including trying to hold his head up to see the teacher, difficulties with hearing, and the struggle of his body doing the opposite of what he wants. This constant physical exertion makes his school day very tiring.

How does Donna describe the physical care she provides for Julian?

Donna describes the physical care she provides, such as bathing, feeding, and assisting with mobility, as manageable and part of everyday life. She doesn't find these tasks difficult, but the challenge lies in managing Julian's uncontrolled movements, which can sometimes cause him harm.

What is the most difficult aspect of Julian’s condition, according to Donna?

The most difficult aspect of Julian's condition for Donna is his uncontrolled movements, as they can potentially hurt him. She finds it challenging to ensure his safety due to these unpredictable movements.

How does Julian’s personality contrast with the challenges he faces?

Despite his physical and mental challenges, Julian has a great personality. He is described as funny, enthusiastic, and happy, which contrasts with the difficulties he faces due to his condition. His positive attitude is a source of joy for his family.

What advice does Donna give to other parents of children with disabilities?

Donna advises other parents to try to live their lives as normally as possible and not get too caught up in the constant therapy and appointments. She emphasizes the importance of focusing on the child's interests and happiness, rather than just their disabilities.

What is the reason Donna continues with Julian's physiotherapy despite its limited impact?

Donna continues with Julian's physiotherapy because he enjoys it. It helps him relax and feel comfortable in his body, as the therapists understand his needs. The therapy provides emotional and physical comfort, even if it doesn't necessarily improve his ability to walk or live independently.

Why does Donna feel frustrated with the way therapists approach Julian’s care?

Donna feels frustrated because therapists tend to focus on what Julian cannot do, such as walking or writing, which can be depressing. She believes it would be more beneficial if they asked about what he can do and focused on his positive qualities instead.

How does Donna manage sleep despite the challenges Julian’s condition brings?

Donna manages sleep by adapting to Julian's needs during his growth spurts, when he often requires more care at night. She wakes up regularly to check on him, adjusts him as needed, and then falls back asleep without fully waking up, even though this results in disrupted sleep.

How has Donna’s career changed in response to Julian’s needs?

Donna transitioned from working as a pharmacist full-time to part-time work as her husband’s assistant. She still does relief work as a pharmacist but finds it too stressful to work full-time due to the demands of caring for Julian.

What is Julian’s perspective on his own disability, especially in relation to meeting others with similar challenges?

Julian acknowledges that being different can be hard at times, but he also embraces it, especially when he interacts with other kids who have disabilities. He has learned that it's okay to be different and that finding ways to enjoy life can help cope with feelings of loneliness.