Overcoming Challenges: The Inspiring Journey of Marusia and Her Family Living with Autism
“Your Child Has Autism”: The Search for Truth
Oksana Konon, a mother from Lida, shares her journey with her daughter, Marusia, who has autism. Oksana’s story is one of resilience, love, and the pursuit of a better life for her child. She recounts the challenges they’ve faced and the triumphs they’ve celebrated, offering a glimpse into the world of a family living with autism.
Early Signs and Diagnosis
Oksana first noticed unusual signs when Marusia was 1 year and 8 months old. The toddler, who had previously babbled like other children her age, began to scream or grunt, avoided eye contact, and stopped responding to her name. She would line up toys and objects, or carry around a handful of colorful pencils like a fan. After medical examinations, Marusia was diagnosed with “psychological development delay” and “speech development delay.” However, Oksana sought a more professional opinion and eventually met with a associate professor of child psychiatry in Minsk, who confirmed that Marusia had autism.
The Struggle for Acceptance and the Search for a Miracle Cure
Devastated by the news, Oksana was faced with a choice: fight for her child’s development or shield her from society. She chose to fight. Initially, she struggled to accept the diagnosis and spent nearly two years searching for a miracle cure. She took Marusia to various healers and churches across Belarus, hoping for a divine intervention. During this time, she also grappled with feelings of guilt, wondering what she had done to cause her daughter’s condition.
Eventually, Oksana realized that her efforts were misguided. She understood that even world-renowned professors couldn’t pinpoint the cause of autism, and she was wasting precious time that could be spent on correctional work. This revelation marked a turning point in her journey, and she began to focus on helping her daughter navigate the world with autism.
Teaching Life Skills and Embracing Uncertainty
Accepting Marusia’s diagnosis meant understanding that it couldn’t be changed. However, Oksana and her family could help Marusia live a fulfilling life. They worked tirelessly to teach her essential life skills, such as making her bed. This task, which took six months to master, involved breaking down the process into smaller steps and consistently practicing each one.
Children with autism often struggle with uncertainty and thrive on routine. To help Marusia adapt to unexpected changes, Oksana and her family constantly communicate their plans and use exercises to challenge stereotypical thinking. For example, they might place a toy bear in unusual positions to help Marusia understand that not everything in life is predictable.
Personal Growth and the Power of Love
Oksana’s journey with Marusia has taught her valuable lessons in patience, perseverance, and the importance of living in the moment. She has learned to prioritize her daughter’s needs and cherish the time they spend together. Marusia, now 11 years old, has made significant progress. She can communicate effectively, enjoys riding the bus, shopping, and visiting cafes, and has even taken on responsibilities like caring for the family’s cat, Shakira.
Oksana’s story is a testament to the power of a mother’s love and the incredible strides that can be made when families come together to support a child with autism. She continues to work tirelessly to ensure that Marusia’s future is bright and full of possibilities.
Embracing Change and Defying Stereotypes
Marusia’s dream to skydive has inspired Oksana to confront her own fears and stereotypes. She recognizes that children with autism often respond better when parents lead by example. Therefore, Oksana is mentally preparing herself to skydive with her daughter, demonstrating her unwavering commitment to Marusia’s happiness and growth.
For further information on autism and how to support families living with it, visit the Autism Speaks website.
