Without a residential facility, she might have killed her eldest son. “Legal barriers and wrinkles for parents” hit 18-year-old mentally handicapped man. | FRIDAY DIGITAL

Without a residential facility, she might have killed her eldest son. “Legal barriers and wrinkles for parents” hit 18-year-old mentally handicapped man.

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After entering junior high school and entering puberty, the crying and angry voices of his siblings became painful for the oldest son, and he began to feel out of place, cowering for a while at the front door or in front of the house

The whole family is on the edge. The current situation of a family with a handicapped child

In July 2008, a mother murdered a 17-year-old severely mentally handicapped child in Kyoto City. The mother, a single parent with no one to rely on, was extremely depressed, caring for her own parents, and in other extreme circumstances, she killed her son with the intention of committing suicide. As her son was about to graduate from high school, there was no employment support facility that met her son’s conditions, so she searched the Internet for a facility that would accept her son temporarily, but was unable to find one. That night, her son tore his clothes and became violent, which is believed to have increased her sense of despair about his future and led her to commit the crime.

More than 120,000 people in Japan still live in residential facilities. Last summer, the United Nations Committee on the Rights of Persons with Disabilities strongly recommended the “abolition of institutionalization,” and “deinstitutionalization” is said to be an urgent issue. So how is life at home actually supported?

We interviewed Hiroki Takeguchi, whose son was a classmate of the school attended by the victim of the Kyoto incident.

We didn’t want to send our child to an institution, and it was a difficult decision,” he said. Currently, the government is promoting the transition to the community, but how much does society understand the exhausted families in the field? In the case of the death of the child’s classmate, we cannot blame the mother 100%, why couldn’t we save her SOS? If we are aiming for a society where people live in the community no matter how severely disabled they are, they must know how we were driven into a corner and how we made the difficult decision to place our eldest son in an institution.”

Takeguchi’s oldest son, who turned 20 last year, was diagnosed with tuberous sclerosis, a designated incurable disease, soon after his birth. He has the most severe form of intractable epilepsy associated with the disease, benign tumors throughout his body, right-sided paralysis, and almost no use of his right hand. His intellectual disability is also rated as the most severe, and his speech is limited to two-word sentences. While working for a medical equipment company, Ms. Takeguchi attended family associations and tuberous sclerosis conferences, and continued to search for ways to care for her eldest son. However, in January ’20, he reached the limit of his ability to live at home. Both husband and wife were exhausted, and the entire family was on edge, so their eldest son had to enter an institution.

The eldest son has a friendly personality and loves to interact with others, but he often has impulsive mood swings that lead him to self-harm and other harm. There was “a constant tension in the home,” she said.

He was our first child, so even though he was disabled, physically handicapped, and unable to speak, he was still our child, and we raised him with great care and respect.”

The eldest son tends to be rough unless he has someone (especially his father, Mr. Takeguchi) all to himself at all times, and he is very careful about how he interacts with his other siblings.

He also placed a heavy burden on his siblings. My family’s life revolved around my eldest son, and I spent most of my time with him while he was awake. So my daughter and I sometimes went jogging together from 5:00 in the morning. During the year-end and New Year holidays when there was no school or after-school day care service, I was always with my eldest son. I couldn’t even go to Hatsumode with my younger children.

Every day passed by with work and taking care of her eldest son. When he was home with his oldest son, he was always in a state of nervous tension, including at bedtime.

Before I came home from work or before my oldest son came home from after-school day care, the thought that I would have to take care of him was so overwhelming that I had to take deep breaths to hold myself together for the long battle with my oldest son that would last until morning.”

Mr. Takeguchi responding to an interview

Days of constant hurt, if things continue as they are, I’ll kill him.

When he entered junior high school and reached puberty, his eldest son gradually became violent. He began to show that he was in a difficult situation and began to engage in self-injurious behavior.

The crying and angry voices of the younger children became painful for my eldest son. The crying and angry voices of the younger children became a source of pain for him.

The situation got worse and worse, and when he returned home, he cowered instead of entering the house, and when he finally did enter the home, the next time he did, he cowered in the doorway for hours, throwing everything in sight, and other behavioral disturbances became stronger. He refused to bathe or eat. Late at night, he would fall asleep exhausted and unable to change his clothes. He began to want to spend time alone in his bedroom as well, so we introduced a camera. We installed cameras to monitor his condition and respond to epileptic seizures or when he needed assistance.

When we woke him up in the morning, he would bite and kick, and since he was unable to eat or take his medication, we had to gently change his clothes while he slept. Even when we managed to get him to the bus stop to take him to school, he would take off his shoes on the way and throw them away.

Whenever I didn’t like what he was doing, he would get violent. He would punch, bite, and kick me in the face from behind when I was putting him on his back. Both parent and child were constantly wounded.

On an evening in January 2008, her oldest son came home and spent hours outside and in the doorway as usual. He could do nothing to change his clothes, bathe, or eat, and I managed to get him to his bedroom, but finally he couldn’t even get into his bedroom, and he spent the morning repeatedly hurting himself in the second-floor hallway in the bitter cold.

I confided in my wife, ‘I think I should go to a children’s center,'” he said. “I told my wife, ‘Shall we go to a children’s center?’ I felt that our oldest son no longer had a safe place in the house. My wife said yes.

After telling the child guidance center about the situation and urging them several times, they were finally able to place him in a facility for children with disabilities. After a few weeks of temporary custody, he was placed in a facility for children with disabilities, and although he was originally supposed to leave the facility when he turned 18, he was granted a two-year extension as a child due to special measures.

Without the residential facility, our family would have collapsed. We did not choose to stay there, but it was the only way. If we had not had the option of residential care, we might have killed our oldest son.”

He recalls that he could not see how a group home where he could come home on weekends, or even a short stay for a few days, would improve the situation, and with no bright future in sight for the family and himself, there was nothing he could do about it.

He continued, “For those who deny the idea of institutionalization, try living with a party with a disability like my oldest son once. The days are always tense so as not to be rough. It’s exhausting, and eventually one of you will reach your limit.”

Takeguchi points out that it is essential to share correct knowledge, to have supporters who are around to properly connect parents with outside help before they reach their limits, and to have a system to support people with disabilities and their families.

I believe that welfare services have improved significantly compared to a decade ago,” he says. However, it is also true that the burden is falling on the families. I think the right thing to do would be to eliminate that burden and allow them to leave the facility.

Before the words “leaving the institution” and “transitioning to the community” can be used, the group is calling for a remuneration system that allows those in institutions to try again and again to live in the community, and a system that allows them to return to their previous institutions even if they fail in their attempts to live in the community.

While the transition of children with disabilities to the community is progressing in Japan, the burden on their families is increasing. As children with behavioral disorders that cause them to harm others or themselves increase as they grow older, it becomes more difficult to continue caring for them at home. Facilities that meet the requirements are always full, and as of January of this year in Kyoto City, there were a total of more than 240 people waiting in residential facilities for people with disabilities. The incident in Kyoto City can be seen as a symbol of the seriousness of the “18-year-old wall” problem, in which there is no place to stay after graduation from a support school.

We must all consider a system to support society as a whole by taking the grief-stricken voice of the mother who has unintentionally become a perpetrator at the hands of her own child into consideration.

Takeguchi’s eldest son, now 20 years old, was diagnosed with tuberous sclerosis, a designated incurable disease, soon after his birth. She says that when he has impulsive mood swings, he often commits acts of self-harm or other harm.
  • Interview and text by Miho Nakanishi

    Miho Nakanishi is a nonfiction writer and representative of the NPO Third Place. Formerly a reporter for a weekly magazine. After receiving twins through fertility treatment, she found out that her second son had a disability. Drawing on her own experiences, she focuses her reporting on assisted reproductive technologies, pregnancy, childbirth, childcare, disabilities, and welfare.

  • PHOTO Courtesy of Hiroki Takeguchi

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