Two Kids. Two Undiagnosed Disabilities.

Summary

The video script narrates the challenging journey of parents raising two children, Colbie and Leighton, both undiagnosed with developmental delays. Despite normal pregnancies and initial developmental progress, the children lag behind peers, facing difficulties in motor skills and communication. The family navigates through various therapies and medical consultations, seeking answers and support. The parents express their emotional struggle, the desire for simple communication from their children, and the hope for a diagnosis to bring closure to their journey.

Takeaways

• 👨‍👧 Parents are struggling with their children's developmental delays and the lack of a clear diagnosis, which makes it difficult to understand and address their needs.
• 👶 The children, Colbie and Leighton, are both undiagnosed with normal brain scans, but exhibit symptoms like hypotonia, motor delays, and need for constant assistance.
• 🤔 The parents yearn for even basic communication abilities from their children, such as a simple 'yes' or 'no', to alleviate some of the challenges they face daily.
• 👪 The family dynamic is heavily influenced by the children's conditions, with parents taking on roles more akin to caregivers than traditional parents.
• 👩‍⚕️ The family has consulted numerous medical professionals, including neurologists and geneticists, all of whom have been unable to provide a definitive diagnosis.
• 🧬 Genetic testing has revealed mutations in the children, but these do not clearly align with any known syndromes or conditions, leaving the family without answers.
• 🏠 The family faces the emotional toll of having their children's lives and their own heavily centered around medical appointments and therapies.
• 🎵 Music is a significant source of joy and comfort for Colbie, who prefers classical music over more contemporary styles.
• 👀 Leighton is using an eye-gaze device to communicate, showing excitement in being able to make choices and interact with his environment.
• 🤷‍♂️ The parents grapple with societal comments suggesting they are 'chosen' or capable of handling their situation, which they find frustrating and unhelpful.
• 🌟 There remains a small hope for a future diagnosis that could provide clarity and potentially a better understanding or treatment for their children's conditions.

Q & A

What is the main concern expressed by the parents about their children's development?

The main concern is that their children, Colbie and Leighton, are not meeting developmental milestones such as speaking and walking independently, and they are both undiagnosed with no known syndrome or condition despite normal brain scans.

What does the term 'hypotonia' refer to as mentioned in the script?

Hypotonia refers to a lack of muscle tone, which affects both fine and gross motor skills, as experienced by the children in the script.

What is Leighton's method of communication as described in the script?

Leighton is working on using an alternative and augmentative communication (AAC) device, focusing on choices with his eyes to communicate his preferences.

How do the parents feel about the geneticist's and neurologist's opinions on the possibility of having another child with similar issues?

The parents are concerned and anxious about the 25% chance of having another child with similar undiagnosed issues, feeling like they are gambling with a human life.

What role does Heath, the transportation supervisor, play in the family's life?

Heath is a dedicated professional who sometimes struggles with balancing his work obligations and the needs of his children, who require constant care and attention.

What is the significance of music in Colbie's life according to the script?

Music is very important to Colbie, serving as a source of enjoyment and comfort. It is also mentioned as a way to soothe her, although it might sometimes mask the underlying issues.

What is the parents' perspective on the comments from others about being 'chosen' to handle their situation?

The parents find such comments frustrating, as they believe anyone would do the same in their situation and do not feel 'chosen' for this experience.

What challenges do the parents face in terms of their children's healthcare?

They face challenges with the lack of a concrete diagnosis, which complicates getting appropriate funding and support for their children's specific needs.

How do the parents describe their experience with the medical community?

The parents have consulted with various specialists, including physical therapists, occupational therapists, and speech physiologists, but still lack a clear understanding of their children's conditions.

What is the parents' emotional state regarding their children's conditions?

The parents express a range of emotions, including frustration, sadness, and a sense of responsibility, while also holding onto hope for a future diagnosis that could provide answers and relief.

What is the parents' view on the importance of communication for their children?

The parents emphasize the critical importance of communication, stating that even a simple 'yes' or 'no' would significantly improve their children's quality of life and their ability to understand their children's needs.