“When you graduate, you will be far from independence …” What is the “18-year-old wall” March 14, 18:50

When I was 3 years old, it was like when I entered kindergarten.

He was a boy who loved to play and sing songs.

After that, his life changed completely due to illness.

While receiving medical care, he attended school for a total of 12 years in elementary, junior high and high school.

However, I am now facing the “18-year-old wall”.

(Yamagata Broadcasting Station Reporter Midori Oikawa)

eat well, sleep well

Riku Fujikawa was born in June 2004 at the hospital.

He was a healthy baby weighing 2780 grams.

Drink plenty of milk, eat well, and sleep well.

And he was a boy who laughed a lot.

Once he learned to speak, he also loved to talk.

Some mornings I wake up singing "Good morning, good morning, good morning" to the rhythm of Mickey Mouse March.

I once read a picture book full of puns and said “Hello Crocodile” and laughed.

A disease with a first-ever name

It was around the age of one when Riku began to show symptoms of the disease.

You may have seizures without a fever, or you may suddenly develop a rash and be unable to drink milk.

When he was one and a half years old, he contracted the flu, which left him with uncontrollable convulsions and an inability to swallow.

After a detailed examination at the hospital, he was diagnosed with a mitochondrial disease.

It was the first disease I had ever heard of.

The function of the brain, muscles, heart, etc. is reduced due to the decrease in the function of mitochondria in cells, and it becomes difficult to see, hear, understand things, and move the body. It is a country-designated intractable disease with symptoms.

No definitive cure has been established.

Even so, after that, he entered a kindergarten at the age of 3 when he was finally able to walk while continuing treatment.

i'm not a baby

In kindergarten, I played a lot with my friends.

It was fun when we were together, and I grabbed the walker I was using at the time and started running.

At the athletic meet race, I held hands with my teacher and ran until the end.

Due to my illness, I get tired easily, so it was difficult for me to walk for long periods of time.

At first glance, she seemed to be in good health, but one day, someone passing by said kindly to her, "You don't have a baby this big."

When I heard that, I became stubborn and walked out, saying, "I'm not a baby!", and later fell asleep.

Hospitalization and need for medical care

It was around the end of the junior class in kindergarten that my condition changed significantly when I fell ill and was hospitalized.

"I'll treat you, so please wait."

The doctor said so, and the mother waited for the whole day.

He was put on a respirator and became bedridden.

After that, he worked hard on rehabilitation, and once recovered to the point where he could live without a ventilator.

However, during the summer vacation of his first year, his condition worsened again and he was hospitalized for half a year.

"Which one do you want to see?" Communication practice

Riku is now 18 years old.

He is a third-year high school student at a special support school that he has attended since elementary school.

At home, his mother Tomoko Fujikawa (59) took care of him, and he spent every day attending school during the day on weekdays.

Mother Tomoko

"In the past, I desperately thought, 'I can't go back to the way it was, even if just a little.' It's not like, 'I'm 18. I'm glad.'

Breathing is on an artificial respirator, and food is taken through a gastrostomy.

Visual acuity and hearing are judged as "not seeing" and "not hearing" in tests, and they cannot express their intentions clearly.

Even so, when Tomoko says "Good morning," she sometimes speaks out, and her mouth moves when she talks about food.

When she spends time at her house, she always sits in front of the TV, and Tomoko always pulls out the TV column and asks, "Which one do you want to see?"

There are times when Mr. Riku blinks his eyes, and there are times when he looks around.

Tomoko decides her promise that "When it crackles, it's YES, isn't it?"

Tomoko's mother

: "I can't tell if the person's intentions are true, but I continue to practice communication as well."

Bathing is a particularly physically demanding part of Riku's nursing care.

When soaking in the bathtub, Riku, who weighs 38 kg, must be lifted from the chair by himself.

Mr. Riku's bathing care takes about an hour each time.

Now, on weekdays after school, I go to an after-school day care service, receive support from helpers and nurses, and have bathing care done five times a week.

"We do not accept children in medical care."

The only problem is life after graduation.

At Riku's school, when students advance to high school, practical training and field trips are conducted to help them decide on their career path after graduation.

Ms. Tomoko also searched for Riku to be able to commute to a "living care office" where she could receive care services such as eating and bathing while receiving care services, but there was a big wall in the way.

In the first place, there were few establishments that accepted people who needed medical care.

Ms. Tomoko, mother

: "It was already hard. Children were told, 'The child cannot receive medical care.' At first, I had a hard time finding candidates.”

We were unable to find a local office to accept Riku, and as a result, we decided to commute to an office in the neighboring city and town. You will also need someone to accompany you.

As for bathing, which is physically taxing, I am currently able to secure bathing care three times a week only through the after-school day service, but after I graduate, I will not be able to attend.

Therefore, it is expected that bathing care will be available twice a week from this spring.

It is said that they are currently considering whether to increase the number of visiting nurses.

While relying on various services, Tomoko spent her days hoping that Riku would be able to live away from her mother's self as much as possible and get closer to "independence."

However, as soon as she graduates from school, it seems that it is reversing, and she says that she feels a gap with the image of "growth" and "independence" that "graduation" has.

Tomoko's mother

: "Originally, I think that a high school boy's day is like a 'mysterious creature' that his mother doesn't know about, and I thought that increasing the amount of time like that would be growth. However, once you graduate from high school, it will disappear, and once you graduate, you will be far from being “independent.” Now, at school, there is almost no need to accompany children, and they can go to after-school daycare services. However, since he returns to needing someone to accompany him and comes home without even taking a bath, I think he will become even more distant from independence.”

Other "mom friends"...

The gap Tomoko faces is equally worrying for younger mothers of children in medical care.

Tomoko established a voluntary organization nine years ago (2014) to create a community for her mothers.

Four years ago (2019) it became an NPO.

The earnest voices were heard from the “mama friends” of the management members.

Maki Iijima:

“Normally, when I think about it, there should be nothing but hope for 17-year-olds, but it feels like being suddenly thrown out into society. If there is, it is very difficult.”

Ms. Shiho Maejima

"When I think about what will happen after I graduate, I'm just worried about what will happen. This child has been hospitalized so many times, and when I thought I was fine until just a little while ago, I suddenly became sick. I wonder who will notice, my parents. I wondered if there was anyone who could do it better than me."

"It is absolutely unforgivable for me to die first. It's hard to think about that child dying, but I'm more scared of myself dying (first)." Unless there is a person who can entrust it with peace of mind, the anxiety will not disappear.I think everyone thinks that."

then by ourselves

Anxiety about the future that all members have.

"In that case, we have no choice but to do it ourselves."

Tomoko talked with her mother friends and decided to take action.

In January this year, I launched a “Daytime Temporary Support Project” for people who need medical care in Miyoshi-cho, which is next to the city where my home is located.

The place rented a house in the area to keep costs down.

Five nurses are enrolled, including a nurse who has been in charge of Mr. Riku since he was in kindergarten.

In addition to taking care of people who need medical care regardless of age during the day from Monday to Saturday, we can also respond to home-visit nursing.

On the first day of the service's launch, the users who visited the service were Mr. Riku and his three children, who are members of the management team.

Immediately, the nurses sucked up the sputum and took over the care points from the mothers.

And we all made pancakes.

Lu also stirred the dough with the help of her nurses and friends.

According to Tomoko, Riku often sleeps in his wheelchair when he is bored or cold.

On this day as well, he seemed to have slept most of the time since he arrived.

Shortly after I started making pancakes, my eyes widened.

Mothers, nurses, and friends cheered at the situation.

Megumi Watanabe

: “I think it’s probably fun.

Looking back on the first day, Tomoko said, "I'm glad the children seemed to be having fun."

Still, it's just the beginning.

Mother Tomoko

: "I think this is the first step. A place where children can spend their days with enthusiasm, for example, a place where they can become a catcher after graduating from high school, and a place where they can live after that. I also want to create a group home.”

"Until then, I can't die"

You may not be familiar with the term “medical caregiver”.

Riku Fujikawa, who I introduced this time, is a person who has grown up to be 18 years old or older, who needs medical care such as sucking sputum and using a ventilator in order to survive. One of them.

In the fall of 2022, NHK conducted a questionnaire with the cooperation of the nationwide organization "National Medical Care Line" made up of the families of the affected children, etc., and received responses from a total of 318 children and families of medical caregivers. I was.

Among them, when we asked how they feel about support for "medical caregivers" regardless of the age of the child, the following results were obtained.

“Sufficient” 0%

“Somewhat sufficient” 0.6%

“Somewhat inadequate” 14.5%

“Insufficient” 57.5%

“Cannot say” 4.1%

“Don’t know” 15.4 %

“No answer” 7.9%

A total of 72% of the respondents answered that they were “insufficient” and “relatively inadequate”.

Also, when asked about the challenges the child has faced since turning 18, and the challenges they are concerned about when they turn 18.

▽ 80.5% of the respondents said that "the child's body is getting bigger, and the burden on the family who cares for them will be heavy", ▽ 75.2%

also lack of "day care facilities" such as "living care offices",

▽ group homes The shortage was also 52.5%.

Riku's mother, Tomoko, was asked, "What kind of challenges does your child face after turning 18?"

Excerpt from Tomoko's questionnaire

"It doesn't mean that you can't communicate = you have no intention, it doesn't mean that you should be left bedridden, and it doesn't mean that you don't feel anything. As a human being, you have rights, and you have emotions. Yes, I want to have fun and learn. They may be troublesome, but I want you to listen to them a little more.”

Tomoko, who launched the “Daytime Temporary Support Project” with her friends, is looking even further ahead.

Ms. Tomoko's mother

: "Actually, we would like to leave everything to a third party and hand over what we have created. If the mother continues to do it herself, the business will not be viable. I'm sure there are people out there who will take care of you, so I think it would be best if it spreads to those people.” Either there will be someone who will say yes.Until that happens, I can't die.Until I secure a place to stay."

Yamagata Broadcasting Station Reporter

Midori Oikawa Joined

the station in 2018

After working in charge of the prefectural police and the Yonezawa branch, he is now in charge of the army

.