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Supporting My Son’s Desires: “I want to do it with my friends”

My son, Shunta, is a senior in high school and will be turning 18 soon. He was diagnosed with autism at the age of 4. He was a hard-to rear-kid, so I used to be pessimistic about his future. But he has grown so much in these past few years that I am now even nostalgic about his younger days. Shunta has become more self-determined and day-by-day vibrantly enjoys his life.

My son and I encountered and started “Dakko Ho” (Japanese Holding Method) when he was 3 years old. We supported him emotionally through the Dakko Ho sessions until he entered high school and through the use of facilitated writing (a way to support his communication) until he became a fifth grader. Now, Shunta can write on his own without support in diaries, in which sometimes he expresses his frustrations. Still to this day, Shunta, his brother and I are continually supported through emotional care provided by his Dakko Ho mentor.

Elementary School Years

Shunta was permitted to enter a regular class of his neighborhood school. At an entrance ceremony, however, he could not walk into the ceremony hall with everybody so I had to carry him in to participate. For the first 2.5 months, I went with him to school every day, until Shunta himself told me that he was okay by himself. Both the classroom teacher and the assistant principal initially recommended that he be placed in a special class, but since Shunta had expressed through facilitated writing that he wanted to be with his friends (which was my strong hope as well), we had to try hard so he could be allowed to stay in the regular class.

Shunta was able to do math problems with some prompts and to write Chinese characters. Although he rarely wrote at school, at home I made sure that he completed his homework to prove that he could do it and he could make it in a regular class. Sometimes I made him write so hard that he cried. It may have been me who was most desperate for acceptance and approval.

The principal at that time would kindly tell me things like he was looking forward to seeing Shunta grow. When Shunta ran up to the front stage while the gathered students were supposed to stay quiet and listen to teachers, the principal would not restrain Shunta but instead told me to wait. He said, “Other children need to know who he is. It must be hard for you, but we need to be patient here.” He taught me the real meaning of “courage”. The principal often invited me into his office, took time to listen to me, and offered to play a negotiating role when I needed to better communicate with the classroom teacher. If it had not been for this principal, I would not have known what to do.

When Shunta was in the fourth grade, we had to move due to his father’s job relocation. We saw a need for support and therefore decided to place him in a separate special education classroom during the summer. He was having difficulties with relating to friends around that time. The special education teacher helped Shunta a lot by realizing his desires to do things like his classmates and not by forcing him, but by motivating him with very skillful timing, even though Shunta often appeared as though he lacked motivation to do things.

At home, I continued to support him with his homework, and maintained communication with school by making detailed entries in a school-home notebook about how he was doing at home. I often expressed my greatest appreciation for the teachers, and when I did have complaints, I carefully reframed them into polite requests. It was something I learned earlier when my straightforward questions and requests made his first-grade classroom teacher rather withdrawn from communicating with me.

When Shunta was in the fifth grade, the regular classroom (of which Shunta was a part-time member) was in a disastrous state, and there was a lot of frustration directed toward the head teacher. The next year, a young male teacher, who was the most popular in the school, took over the class. It made a world of difference and both the children and parents/caregivers were happier as a result. In the fifth grade, Shunta had frequently been forgotten when he was supposed to move with his nondisabled classmates in the regular class; however, this situation dramatically changed in the sixth grade as the new teacher would come with other kids to the special education class to make sure they included Shunta. When the teacher did forget, he would apologize to Shunta in a manner in which other children could hear him. As the teacher provided the other children with a good model of how to communicate and interact with Shunta, the classmates changed their attitudes toward him as well. The many successful experiences that Shunta had in this sixth grade classroom gave him lots of confidence later on.

Junior High School Years

(*Translator’s note: Shunta was placed in a separate special education class at a regular junior high school. He also had a designated regular classroom in which he took some of his classes.)

Reflecting back on Shunta’s junior high school years, I feel that there were few children who could extend their minds and interests toward Shunta. Being at that adolescent stage, most kids were pretty much preoccupied with their own needs and studies. There was a school diary that Shunta wrote in at home and submitted to his teacher the next day. In this diary, he frequently wrote of complaints, frustrations, and even ill words towards his classmates, which I believe were a counter-reaction to his deep desire to have friends. The teacher eventually shut him out by saying that he did not want to hear such negative remarks. Shunta continued to write though. I think he had to. This must have been his inner screaming.

After he graduated, Shunta received an invitation to a reunion party of the junior high school, but said that he did not want to go. Things like this tell me that those years were really difficult for him. It was difficult for me as well as I watched him struggle. We do maintain communication with his special education teacher from the junior high, and occasionally share updates over some meals.

High School Years

(*Translator’s note: As there are no special education classrooms in regular high schools according to the current education system in Japan, one has to choose whether to go to a segregated special school or to enter a regular classroom of a regular high school where no special education support is legally guaranteed. Shunta chose the latter and goes to a regular high school.)

I continue to advocate for my son by making frequent visits to the school, by serving as a committee member of the Parent Teacher Association for the past three years that Shunta has been enrolled at the high school, and by trying to maintain closer communication with the teachers. As the time is approaching when he is to graduate from high school, Shunta wrote the following.

My Memories of Three Years at the High School
By Shunta

The happiest thing about my high school life is that I made lots of friends in class. Everyday, at lunchtime, we would share our snacks (which were sometimes homemade). During recess, it was so fun to share and read comics or magazines together or just to fool around. After school, we would leave school in a group and stop by stores. It reminded me of sixth grade – another time in my life when I made many friends.

The best school event was the class sleepover we had in the summer. When I was a junior, I saw and envied my friends having fun while playing cards together. I wanted to play cards like them. At the sleepover of the senior class, I too was able to play cards with my friends and watch TV and relax together. It was just like going on a senior graduation trip and sharing comfortable personal time in a room with friends.

I loved the three years of my high school life; it is a bit wistful to graduate.

Nowadays, it is hard for anyone to find jobs. Even with disability service eligibility, some people (particularly those with milder disabilities) must find their jobs by themselves. Amid such economic downturn, I feel lucky that Shunta will be able to enroll the Employment Support Center next spring after graduation and receive necessary support in finding a job.

In conclusion, I do not believe that the current education system in Japan offers equally good educational opportunities and support to all children with autism. Receiving a good education depends on parents’ tremendous courage and efforts to have their kids understood by others as well as on the kids’ own luck in having good teachers. There are not yet enough educational environments to support everyone to live their own full lives and to become the person they really are. It is my strong hope that greater understanding of and a network of support for children with autism will develop in Japan.

Yuka Kobayashi

The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.

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