#DownRightPerfect: What it's like to have a child with Down syndrome

Summary

This heartfelt video follows a family's journey after their daughter, Emily, is born with Down syndrome. Initially overwhelmed by fear and uncertainty, the parents gradually come to embrace their new reality with strength and love. The story highlights their commitment to Emily's growth through therapy and support, while also focusing on the bond between Emily and her older sister, Maya. Through their journey, they discover that happiness isn't about being 'typical,' but about love, acceptance, and cherishing each moment. Their story offers hope and encouragement to other families navigating similar challenges.

Takeaways

• 😀 The initial shock of the Down syndrome diagnosis brought fear and uncertainty, especially due to lack of exposure to the condition.
• 😀 The parents' journey was filled with emotional struggles, but they ultimately found comfort in accepting their daughter as part of their family.
• 😀 The advice to take it day-by-day and not to overthink the future was crucial in managing their fears and enjoying their child.
• 😀 Connecting with other families of children with Down syndrome through social media helped the parents gain confidence and comfort.
• 😀 The family was committed to giving their daughter, Emily, the best support, including therapy from physiotherapists, speech therapists, and more.
• 😀 The family's focus is on helping Emily reach her highest potential through a coordinated effort with various professionals.
• 😀 Therapy sessions at places like Variety Village and Surrey Place help Emily with motor skills, communication, and overall development.
• 😀 Emily's therapy incorporates play-based techniques to motivate her and make activities enjoyable while supporting her development.
• 😀 Emily's speech therapy includes using sign language to supplement her language skills, as children with Down syndrome often have speech delays.
• 😀 Being bilingual (Japanese and English) did not negatively impact Emily's development, as research shows that children with Down syndrome can become bilingual.
• 😀 The sibling bond between Emily and her older sister, Maya, is strong, with Maya showing great responsibility and patience despite challenges.
• 😀 The family has learned that happiness and strength as a family are not defined by typical expectations, but by embracing and loving Emily for who she is.

Q & A

What was the initial reaction of the family when they found out their child had Down syndrome?

The initial reaction was one of overwhelming fear, primarily because Down syndrome was something unknown to them. They had imagined a different reality for their family, and accepting this difference took time and emotional adjustment.

How did the family's experience with Emily's health challenges after birth impact them?

Emily had significant health complications right after birth, including a drop in blood sugar levels, which led to an extended stay in the NICU. This was a shock to the family, intensifying the initial emotional struggle, but they received support and adapted over time.

What was the best advice the family received after Emily's diagnosis, and how did it affect them?

The best advice was to take things day-by-day and not to overthink the future. This advice helped the family shift their focus from worrying about the long-term challenges to embracing the present and enjoying their time with Emily.

How did connecting with other families help the family feel more confident about Emily's future?

By connecting with other families who had children with Down syndrome, the family saw how joyful these families were and how much their children contributed to their happiness. This gave them comfort and confidence, showing them that Emily could lead a fulfilling life.

What role did social media play in the family's journey with Emily's Down syndrome diagnosis?

The family used social media to share their journey openly, posting pictures and being transparent about Emily's diagnosis. They hoped that others in similar situations would find their page and see that they were a regular family, offering hope and support.

What kinds of therapies does Emily receive, and how do these therapies contribute to her development?

Emily receives physiotherapy, speech and language therapy, developmental therapy, and occupational therapy. These therapies help her build strength, improve communication, and develop essential skills to reach her highest potential.

What is the focus of Emily's physiotherapy, and how does it help her?

Emily's physiotherapy focuses on improving her muscle tone and strength, addressing the lower muscle tone common in children with Down syndrome. The therapy uses play and tasks to help Emily accomplish goals like stepping up onto a platform or climbing, contributing to her gross motor skills development.

How does Emily's speech therapy incorporate language learning, and what challenges does she face?

Emily's speech therapy involves using both speech and sign language to enhance her communication skills. Due to her low muscle tone, making speech sounds can be difficult, so sign language is often introduced first as it’s easier for her to use visually and with her hands.

How does being bilingual affect children with Down syndrome, according to the family?

The family was initially concerned about whether Emily could become bilingual, especially since her mother speaks Japanese at home. However, there is no evidence that bilingualism harms children with Down syndrome, and they believe that Emily can successfully learn both languages.

How does Emily's sibling, Maya, adapt to the changes brought on by Emily's Down syndrome diagnosis?

Maya, Emily’s older sister, has been very responsible and patient throughout the process. Although Maya had to make sacrifices, she was understanding and proud to share Emily’s Down syndrome diagnosis with others, highlighting the supportive sibling bond they share.

How has Emily's presence changed the family’s understanding of happiness and fulfillment?

Emily's arrival has reshaped the family’s definition of happiness. Although her life and needs may differ from those of a typical child, Emily brings immense joy, and the family feels infinitely happier than before. They now understand that having a fulfilling life doesn’t require conforming to societal expectations.