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

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.”