"I Blamed Myself Over and Over, But I Didn't Want to Give Up: Exploring the Journey of Sou-kun's Mom and Her Severely Disabled Child, Sou-kun."

*Information was verified and partially updated on February 20, 2026.*

This time, we spoke with Yuko Yamashita (Sou-kun's mom), the representative of the peer support group "Care Mami" active in Saga City, Saga Prefecture.

Sou-kun has physical disabilities due to the aftereffects of a brain hemorrhage that occurred before he was born, and he usually lives using a buggy (a mobility aid classified as a type of wheelchair).

Sou-kun's mom lives with Sou-kun, a child with severe physical and mental disabilities diagnosed with total blindness, West syndrome (infantile spasms), and autism.

Driven by the desire to "reach out to families in similar situations," she engages in various activities such as disseminating information on social media platforms like Instagram and YouTube and selling support tools for families raising children with severe disabilities.

We asked Sou-kun's mom about raising a child with severe physical and mental disabilities and her thoughts on the activities of "Care Mami."

1. Who is Sou-kun's Mom?

1-1. Learned of the Child's Disability at 8 Months Pregnant

[Interviewer (Writer): Yafujo / Interviewee: Sou-kun's Mom]

Yafujo: I heard you had experience working at a facility for people with disabilities before Sou-kun was born. Were you originally interested in the field of disability welfare?

Sou-kun's Mom: I initially attended a vocational school to obtain a qualification as a care worker. There, I had the opportunity to do an internship at a residential facility for people with intellectual disabilities to prepare for the national exam.

The people I met there were so genuine and wonderful. I was drawn to their purity and thought, "I want to be involved too," so I started working as a care worker.

There, I assisted people with severe disability certifications with bathing and eating. Even though there was little verbal communication, I think I enjoyed my work.

Yafujo: Having experienced working with people with disabilities, how did you feel when you found out about your own child's disability?

Sou-kun's Mom: At 7 months pregnant, I experienced bleeding and was hospitalized for management. Around the 8-month mark, a routine ultrasound revealed that there had been a brain hemorrhage, and a disability would remain.

The approximately three months until birth were mentally very unstable. Since I was hospitalized the whole time, I had my mother or husband stay over whenever possible.

When it becomes your own child with a disability, it's different from work; it's personal, so accepting it was quite difficult.

I thought, "Maybe I can't raise a child with a disability." Realizing that I had a kind of discriminatory mindset within myself was also quite shocking.

Yafujo: How did you feel when Sou-kun was born?

Sou-kun's Mom: I had a C-section and had to rest for a while, so I met Sou-kun on the third day after birth. When I went to the NICU and saw his face, I was surprised. He was so cute and looked just like my husband (laughs).

Yafujo: You mentioned realizing your own discriminatory mindset, but how did you and your family react when you found him adorable?

Sou-kun's Mom: I had heard "your own child is cute," and it was really true. My husband was allowed into the NICU right after birth, and he was the first to see Sou-kun's face, exclaiming, "He looks just like me!"

My parents, my husband's parents, and my sister were waiting outside the operating room, and everyone thought he looked exactly like my husband.

1-2. Am I Accepting My Child's Disability? Still Struggling

Yafujo: What kind of struggles and changes in feelings did you go through in accepting Sou-kun's disability?

Sou-kun's Mom: I often talk with people around me, and if asked if I've accepted the disability, there are still feelings of not being able to fully accept it.

When I see healthy children, I think, "I wish Sou-kun could have been born healthy," so I wonder if I've really accepted it.

Yafujo: I feel like you shared your honest feelings, and I realize I asked about "accepting the disability" too casually...

Sou-kun's Mom: I think moms who say "I'm fine, I'm fine" might not have overcome it as much as they say.

In the circle I host, I've heard from senior moms whose children are adults but still haven't fully accepted it.

I recently found myself wondering if I've truly accepted Sou-kun's disability.

2. Sou-kun's Growth and Support from Others Have Supported Me

2-1. Support from Child Development Support Facilities

Yafujo: Since Sou-kun was born, have there been any supports you were glad to connect with?

Sou-kun's Mom: Starting to attend a child development support facility was quite significant. From ages 1 to 3, it required mother-child attendance, and as he got older, the facility increased the number of days they could take care of him alone.

When we attended together, we went about five times a week. With the caregivers there, we spent time singing songs, doing origami, and engaging in physical activities.

Sou-kun went through a very challenging period from ages 5 to 8, crying and screaming at night and not sleeping at all, sleeping for two hours and waking up for one. My husband would come home from night shifts around 3 a.m. and watch Sou-kun while I slept, repeating this routine.

Yafujo: That sounds incredibly tough... During the day, I would think staying at home would allow you to rest more, but was there a reason for attending five days a week?

Sou-kun's Mom: Sou-kun couldn't stay at home all the time. So if he didn't sleep at night, we would drive around continuously. We only had a little time at home on Sundays.

Yafujo: So Sou-kun was a child who wanted to go out.

Sou-kun's Mom: Even if he was crying, if I asked, "Do you want to go for a drive?" he would stop crying. He liked going out, or in hindsight, it might have been a fixation (a characteristic of autism).

The child development support facility we attended sometimes had about 20 parent-child pairs gathering to have lunch together. Connecting with other moms there was the most significant thing for me.

2-2. Adapting to the Characteristics of Autism Spectrum Disorder

Yafujo: You mentioned that characteristics of autism spectrum disorder were noticeable even before the diagnosis. Are there any adaptations you've made in living with Sou-kun?

Sou-kun's Mom: Sou-kun was diagnosed with autism spectrum disorder in the second grade.

Once, when submitting instructions for dealing with epileptic seizures to the school, I had the epilepsy diagnosis written by the hospital. In that diagnosis, at the end of various disability names, "autism spectrum disorder" was written.

Yafujo: It must have been surprising to see it written in the diagnosis.

Sou-kun's Mom: I was surprised (laughs). That was the first time he was diagnosed with autism, so I thought, "Is there a way to adapt to his characteristics?" and started researching by getting reference books.

At the facility I worked at, we also did visual support, so I thought, "Even though Sou-kun can't see, we need to do what's necessary." To help Sou-kun understand his daily schedule, I started using symbols to communicate routines.

Yafujo: I watched your YouTube videos and was impressed by how Sou-kun understands these symbols. How did you establish this routine?

Sou-kun's Mom: I decided on the symbol for "school" without much thought, choosing a handbell. We attached a bell to Sou-kun's backpack and hung the same bell at the entrance of the school classroom to match them.

Sou-kun understands when he hears the sound, so we use sound-based symbols. We also do symbol and location matching at the day service.

Yafujo: So it's like having a symbol to check the routine in the morning, a symbol on the bag, and a symbol at the location?

Sou-kun's Mom: Exactly. At the day service, we prepare a large handbell and have the staff ring it to say, "This is the day service," as part of the routine.

Yafujo: You're coordinating with the school and day service as well.

2-3. Noticing Sou-kun's Growth in Daily Life

Yafujo: What has been memorable for you while watching Sou-kun grow?

Sou-kun's Mom: I'm the type to try anything, even with routines, but my husband surprisingly thought, "Sou-kun doesn't understand that." However, we're often surprised by how much more he understands and can do than we thought.

He now knows left from right well, and when I say, "Lift your right foot," he lifts his right foot, and when I say, "Lift your left foot," he lifts his left foot and helps with putting on socks.

It's not so much that he suddenly becomes able to do things, but rather we realize, "Oh, he can do this too."

Yafujo: That's amazing. Has it naturally become ingrained through daily repetition? Do you get reports from school about things he's able to do?

Sou-kun's Mom: Yes, we did. I think it was around fifth grade. We thought Sou-kun only listened to nursery rhymes. We assumed he only listened to nursery rhymes and didn't like anything else.

When he entered the special support school, each student was provided with a tablet for learning, and the teacher reported, "He was really happy when Aimyon's song played."

We usually play J-POP music in the car, so we were surprised to learn, "Oh, Sou-kun likes Aimyon!"

Yafujo: His interests are expanding as he grows!

3. What Sou-kun Has Taught Me Through Parenting

Yafujo: What have you learned from raising Sou-kun, and what do you value in parenting?

Sou-kun's Mom: I believe a child's potential is limitless. Things parents might have given up on, they might actually be able to do, so I think it's important to create an environment where they can try things.

In parenting, I value the idea that "a parent's smile is conveyed to the child," so I try to manage my own mood.

Sou-kun had a long challenging period, so there were times when my frustration built up. I learned anger management techniques like "count to six when frustrated" and practiced deep breathing in another room.

He was a child who cried constantly, so I went through phases where I could understand why some moms might resort to raising their hands.

When Sou-kun was small, it felt like we were almost one entity. I knew having some distance was necessary, but with a child with severe disabilities, you can't take your eyes off them for a moment, so I think maintaining a moderate distance is important.

Yafujo: How is that distance now?

Sou-kun's Mom: I think it's really good now. Even children with severe physical and mental disabilities grow, and their music preferences change a bit. Recently, he tells me, "Don't come here," so I try not to get too close (laughs).

Yafujo: Does that mean Sou-kun wants to enjoy his own time?

Sou-kun's Mom: Yes, he doesn't seek much physical contact. He used to say, "Come here," but now he even elbows me away, saying, "Go over there."

Yafujo: That's typical of a 13-year-old (laughs).

4. For Those with the Same Feelings: The Background and Future of "Care Mami"

Yafujo: Could you tell us about the background of starting "Care Mami"?

Sou-kun's Mom: When I started sharing information about barrier-free housing on Instagram, I checked the posts of someone who followed me and realized they lived nearby. They had posted about events at the same therapy facility, and I thought, "That's the same facility's event!" and reached out.

That mom is now the vice representative of Care Mami.

Yafujo: Wow! What a coincidence!

Sou-kun's Mom: She followed me because she was considering a barrier-free home and didn't expect us to live so close.

She told me that she was attending the child development support facility that Sou-kun and I used to go to, and she said, "Now there are more places that take care of children, so there are fewer moms who want mother-child attendance, and sometimes I'm the only one there."

Yafujo: The number of users at the facility you attended 10 years ago had decreased.

Sou-kun's Mom: I thought it was great that there were more options for facilities in the community, but when I heard, "I'm eating alone without talking to anyone," I thought that wasn't good! So I suggested, "How about a tea party?"

Since our homes are about a five-minute walk apart, we decided to hold it at a nearby community center. I met the vice representative in January 2023, and we started Care Mami's tea parties in March.

Yafujo: From there, you've continued the tea parties twice a month. How many moms are gathering now?

Sou-kun's Mom: At the recent Christmas party, about 66 people gathered. They came not only from Saga City but also from within Saga Prefecture and even Fukuoka Prefecture.

Yafujo: That's amazing! The circle is expanding quickly.

Sou-kun's Mom: It's unexpected and appreciated. Being featured on TV and other media has been significant, and people come as soon as they hear about it. Many people want connections.

I think "connecting" is important, but I also realized that even when talking with moms of children of the same age, there are many things we don't know.

When I attended the child development support facility, I wanted to hear from senior moms, so I organized a gathering of about 30 moms to hear about school experiences.

I always wanted such information, so I intended to start a circle, but it took a while to execute, and I finally launched it recently.

Yafujo: Do fathers participate too?

Sou-kun's Mom: Yes, of course.

Yafujo: Are fathers also seeking such connections?

Sou-kun's Mom: In September 2023, we held a photo shoot event, and dads participated. Many are not very talkative, but there's a desire for opportunities for dads to meet, and there's a request for "a gathering for dads."

Yafujo: With all these activities, what drives you, and where do you find your energy?

Sou-kun's Mom: It's simply the thought that if my experience can help other moms and families in similar situations, that would be great.

Yafujo: Seeing the connections grow, do you feel that even more?

Sou-kun's Mom: Yes, on Instagram and other platforms, followers often say, "Thank you as always." Hearing such voices makes me think, "I'm glad I'm doing this."

5. Words for Families with Children with Disabilities

Yafujo: Lastly, what would you like to convey to families raising children with disabilities?

Sou-kun's Mom: When Sou-kun was little, I didn't have much leeway myself, so my memories of holding him are faint. Now he's grown too big, and holding him is quite challenging, so I hope families can enjoy the time when they can still hold their child.

Also, I was anxious because I had no idea how Sou-kun would grow. So, by looking at our Instagram, I hope families can imagine, "Maybe this is how it will be in the future," or "This is how they live," and get a sense of what the future might look like.

6. In Conclusion

This time, Sou-kun's mom shared her feelings before Sou-kun was born and the intense experiences after his birth. I felt that she has always valued "facing Sou-kun" and "facing parenting and the people around her" while dealing with various emotions and uncertainties.

The words she shared, "Sou-kun has a disability, and I want to understand him completely," were particularly striking.

Sou-kun's mom's communication about raising Sou-kun conveys not only the changes in emotions during parenting and interactions with family but also covers a wide range of topics, including barrier-free housing, welfare equipment, and welfare systems.

We want to continue supporting Sou-kun and his mom's communication and activities.

If you want to learn more about Sou-kun's mom, please check out her Instagram and website.

Official Website: https://zyuushinnweb.com/
Sou-kun's Mom's Instagram: https://www.instagram.com/sou2010k/
"Care Mami" Website: https://caremamicircle.my.canva.site/
"Care Mami" Instagram: https://www.instagram.com/caremamicircle/
YouTube: https://youtube.com/@sou2010k?si=Et7uBt5MXvDUz30J