Beyond Autism Spectrum Disorder: Luka’s Mom Journey of Acceptance and Growth
Hello everyone! I’m Daniela, an intern at Colorful Kids Models with a passion for inclusion and innovation. Diagnosed with diabetes at a young age, I’ve always understood the importance of celebrating diversity and creating opportunities for everyone to shine. Colorful Kids Models’ mission deeply resonated with me, and when the chance to write this blog arose, it felt like a chance to contribute to something truly special. This blog is a glimpse into their world, and I hope as you read it, you’ll feel the same spark of inspiration that filled me while writing it.
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Have you ever met someone whose spirit is so infectious it fills the room? That’s exactly how I felt after talking to the amazing mom of our model, Luka. Her positive outlook on intellectual disability is effortless and just admirable. Dive deep into the conversation in today’s blog post! Grab a cup of tea, get cozy, and let Luka’s mom bravery inspire you.
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What were your initial thoughts and feelings when you first heard about Colorful Kid Models and learned about the idea of a modeling agency specifically for disabled children?
It was a significant opportunity for me. I didn’t want to hide anything about Autism Spectrum Disorder, and it was a great moment to spread awareness, the unique characteristics of these children, and the reality of their lives.
How has being part of Colorful Kid Models positively impacted the life of your son?
Although he hasn’t participated in many photo shoots yet, last year we’ve been involved in a major shoot at a university. The teachers and students there were incredibly welcoming and accepting. My son, Luka, was smiling a lot and seemed to have so much fun. The environment was so positive and supportive, which made a huge difference for him. It was a moment of pure joy and acceptance.
Have you noticed any personal benefits or growth as a parent since becoming involved with the company?
Yes, definitely. I feel like I’ve gained many friends. Even though we didn’t have many opportunities to meet in person due to COVID-19, we still feel connected. It’s like we’ve known each other for a long time.
Can you share a bit about your son? What are some of his talents and interests, or activities he enjoy in his free time?
Luka loves playing Frisbee. It’s an activity that requires someone to play with, and he enjoys that interaction. He doesn’t just play by himself; he likes the company.
Education about disabilities is crucial for raising awareness. Could you please tell us about your son’s specific disability and its characteristics to help broaden the understanding?
Luka is very sensitive to new places and people. He has strong personal routines and rules. For example, when he goes to a day service, he needs to visit all the convenience stores nearby first to check for ‘S zou-kun’ marks – signs indicating that help is available. It’s his way of feeling secure. Initially, I tried to rush him, which caused panic and refusal. Now, I’ve adapted to his routine, and things are smoother.
What changes did you need to adapt to when raising a child with a disability? Was there something else beyond adjusting to his routine?
Yes, I had to change my approach to his safety. For instance, he used to go out on the balcony and try to climb over the gate. Instead of just pulling him back and saying it was dangerous, I started asking him what he was doing and understanding his reasons. This approach has reduced his panic and refusal. Once, he even left the house to watch buses. I searched for him for two hours and after I found him I realized he had a reason for everything he did. I just try to understand his actions and since he can’t talk we found different ways to communicate.
Have there been any other challenges when trying to communicate with your son?
Communication is always challenging. I ensure to look into his eyes when talking to him. If he’s looking elsewhere, he might not recognize that I’m speaking to him. He can understand my emotions by looking at my facial expressions. This change has made our interactions more effective.
Can you share some of the best moments of raising a child with a disability?
There are many. He kisses me on the cheek every day and if he touches my ear he can tell how I feel. He communicates through hugs and kisses, which means a lot since he doesn’t talk. We share a special hug for seven seconds daily, which signals love and affection. Even when we are upset, a hug resolves our issues. And I know that he is growing up and typical 13 year old boy wouldn’t want to do this so I do appreciate these pure moments of love even more.
In your opinion, why is representation in the modeling industry particularly significant for children with disabilities?
Representation is crucial because it shows that people with disabilities are part of society. There are many things they can do, and they should be recognized for it. The concept of ‘normal’ is subjective, and everyone has their strengths and weaknesses. By participating in modeling, we hope to blur the lines between disability and non-disability, showing that everyone is different yet equal.
The term “disabled” often carries negative connotations. What are your thoughts on this, and do you feel there’s a need for a shift in language?
English terms like “challenged” or “differently-abled” sound more positive than “disabled.” However, in Japanese, both terms we use are negative and inappropriate. Language plays a significant role in perception, and positive language can make a difference.
Can you share an interesting story about your family?
Initially, my parents were ashamed of having a disabled grandchild. Once I mentioned to my mothers friend about Luca’s disability and my mother’s face expression was full of shame. I told her that I would never be ashamed of my child. She was shocked and realized her mistake. From that moment, she accepted Luca and started seeing his strengths instead of comparing him to other children. This change in attitude created a supportive community among her friends who also had grandchildren with disabilities.
What advice would you offer to parents who may still feel hesitant about fully embracing their child’s disability?
Everyone has things they cannot do. The strengths and weaknesses of people with ASD might be more visible, but no matter if you have disability or not we are all just different people with different talents. Accepting these differences can make life happier and easier. I hope everyone can embrace this mindset and create a more inclusive society.
Thank you so much for sharing your thoughts and stories with us today.
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Understanding the daily realities of those with intellectual disabilities is key to fostering empathy. After all, knowledge is power! We hope this blog post has empowered you with a deeper understanding, and left you eager for more. In our next post, we’ll welcome the incredible parents behind our newest model. So stay tuned!
Check Daniela’s other articles: