The Hankook Ilbo: balance in seeing the world

“Ever cried while watching a gag concert, reporter?” Choi Ji-yeon (44), who lives with her son with autism spectrum disorder in Yeoncheon-gun, Gyeonggi-do, asked the reporter at the end of the interview. He was about the sadness that only families with developmental disabilities can feel. “There is no TV in our house. Conversely, there are times when I feel depressed or hurt when I watch TV. Do you know why there are kids appearing as “Mojiri the Fool” in comedy shows? The audience just laughed, but I had tears in my eyes. I didn’t even know until I had my son. I would have laughed like that too.” Choi Min-jae (pseudonym, 13), who inherited the surname Jiyeon, a single mother, has a “severe disability” of the autism spectrum (formerly grade 2). She noted the autistic tendencies of her son around 12 months of age. That’s way ahead of the average time to discovery (3.1 years for autism). Even so, I had to wait five months to get a diagnosis at Yonsei Severance Hospital in Seoul. Even though, recently, the care of a well-known children’s psychiatrist in the metro area is already full of bookings up to 3-5 years later, so parents can’t even dare to pay.(Related Article ▶ “Professor specializing in autism, appointments for the treatment until 2027 have been completed”: if you can’t click, search this address at www.hankookilbo.com/News/Read/A2022100310430004161) I went out to the corridor and cried. At first, I was confident to raise my child alone My mom raised me by herself too, so she said, “What can I say that I can’t do?” After raising my son, I got a job in Seoul. I was about to go back to work like before.” However, after learning of his son’s disability, Jiyeon’s “highest goal” became his son’s independence. To do so, he had no choice but to dedicate himself as much as possible to education and rehabilitation care. Immediately after being diagnosed, from the age of 17 months, she traveled two hours round trip from Yeoncheon to Uijeongbu to visit the developmental rehabilitation treatment hall. Since I earned a living with the security of basic livelihood, I was determined to do everything possible even if my circumstances were not enough.Jiyeon’s mother and daughter still attend rehabilitation therapy classes in Yangju (special physical education and play therapy ) and Uijeongbu (swimming). This is because there is only one treatment room in Yeoncheon-gun which is supported by the county office, and there are not many teachers there, and they change often. of treatment is about 45,000 won per session. “The unit price of the government-supported development rehabilitation voucher is 27,500 won per episode (maximum 220,000 won per month). There is a big difference between the actual cost of treatment. However, the cost of rehabilitation treatment is basically between 40,000 and 50,000 won per session, so therapists have to earn money to get a job. You don’t even get to that point. Given this situation, tickets (for families with developmental disabilities) have no choice but to increase”. As much as the lack of infrastructure for the disabled in rural non-urban areas and negligent welfare administration, it was the “lack of understanding of autism and developmental disabilities” that made Jiyeon difficult. In the past, Ji-yeon had completed the ‘Disability Activity Supporter’ training course. In addition to preparing a livelihood in case of an unexpected situation later, I also wondered, ‘What kind of education will people who come to see my child receive?’ However, when the cause of the developmental disability was explained as “mother’s smoking and drug addiction”, Jiyeon’s hands could not help but shake. Developmental disabilities are known to be caused by various complex factors such as genetic causes, acquired structural brain damage, and environmental factors. In particular, some criticize the prematurity of women, but in the case of autism there has been accumulating research findings that it is related to the age of men (fathers). “Developmental disabilities don’t have distinct causes. But when my mom raised me that a child with a disability was from drinking and smoking, I was so angry and pissed. She’s creating bias.” Ms. Jiyeon said that other mothers of children with developmental disabilities around her also heard from a friend of hers her child’s age, ‘Aunty, did your teeth ○○ hurt because you smoked? ‘ “What do first and second graders know? What’s wrong? They must have seen and heard adults say things like that, blame (smoking). I have no choice. It just makes my heart hurt.” Minjae-gun, who grew up in a difficult situation in Yeoncheon-gun, where there is no kindergarten or special school for special children, will go to A Middle School next year. I almost sent it without a special teacher. The reason was that it was difficult to find a teacher if there was only one disabled student. Middle School B, suggested as an alternative by the local government Special Education Support Office, was 30-40 minutes one way by public transport. Given the characteristics of the son, I could not think of sending him away. “Middle School A has a shuttle bus, Middle School B doesn’t. But they say, ‘Mom, Middle School B is closer to my house. That got me. The kid can’t kill even an ant. I’m afraid the the ant on the ground will die, so I walk carefully. I play with the dog walking down the street for a while and stop to watch the birds in the sky. If I walk like this, it’s a distance of 5 minutes. It takes 20 to 30 minutes to get there. But do they send me to middle school where I have to walk 15 to 20 minutes to the bus stop before getting on the bus? The moment I decided to “let’s go to middle school A for now, let’s persevere in some way,” I heard that another student with disabilities was coming, just like Chun-woon. Jiyeon also had to worry about relocation many times due to poor education and rehabilitation treatment infrastructure. In a survey conducted by the Minority Team of the ‘Hankook Ilbo out of 1,071 families lie with developmental disabilities, over 60 percent of respondents said they have already moved or are considering moving due to infrastructure issues in 12 of 17 metropolitan governments across the country. . said mr. “It is said that special schools have sprung up here and there these days, but they are mostly selected for short distances. If you have enough money, you will move. When I looked around, they usually went forward 3 or 4 years and waited. But right now I can’t even dream. I currently live in a studio apartment with a down payment of 10 million won and a monthly rent of 250,000 won, how can I move?” (Related Article ▶ Find a special school, pay off debts and move… For special classes, “Go to another school”: if it doesn’t work, look it up at www.hankookilbo.com/News/Read/A2022100409060001371. ) He said the hardest thing was the “money” issue. Although local governments provide livelihood benefits, they constantly exert psychological pressure to “do business”. About 10 years ago, when my son entered daycare, the ward office told me ‘we can’t pay anymore’. It’s that you don’t have time or space to work. There have been times where local governments have asked me to declare “non-existent revenue” as if it were “existing”. Otherwise, support was difficult. I reluctantly did so and the money was deducted from my bid and ask expenses. Sometimes, from Monday to Sunday, I was told to write down in detail what I do every day. “It was really humiliating.” “I feel like I’m constantly forced to make a choice. If I work, I have to opt out of my child’s developmental rehabilitation treatment and I need government support for treatment, but it seems like the local government is asking me to ‘choose one or the other”. I’d rather. If you take responsibility for (care), I’ll go to work comfortably, but in the absence of such a system or environment, (choosing between money and care) is just to raise the child as a ‘neighborhood idiot’.” I tried to use the “activation support service for the disabled”, which received 120 hours a month, but there was no activity support company willing to come even after sending a notice to the activity support provider in Dongducheon. “I understand why you say, ‘Shouldn’t you do public work?’ But I want you to understand the situation of a mother raising a disabled child alone. I completed my education just in case. But after school, I have to pick him up in the nursing room, and during the holidays, my son doesn’t even go to school, so who would use me like that? They don’t understand that finding a job itself is difficult.” ▶Go to the first part of Jiyeon’s interview: You can read more about Jiyeon and Minjae’s story through yesterday’s article (19th). If it doesn’t click, search www.hankookilbo.com/News/Read/A2022111113130004896 ▶ Interactive shortcut: Click to see all survey results from 1,071 people. If you can’t click, copy the address (interactive.hankookilbo.com/v/disability/ ) and enter it in the search box.