By Rieko Chao, Representative
“Raising Amuro Club” was created following a symposium on “Children’s Brains and their Development” held on September 26th and 27th, 2011 by Professor Youichi Sakakibara of Ochyanomizu Graduate School and its discussion sessions. It is a self-help group for parents who have children with autism spectrum disorder (ASD). While there are those who graduate, there are also new comers and we have maintained around13 members.
Some of you might not be familiar with the term “Amuro” and wonder, “What is the Amuro Club? ”
Its is named after a hero, Amuro Ray, of “Mobile Suit Gundam“ in the world of anime that became really popular more than 30 years ago. The television series is still popular and has been televised until now as the ” Gundam Series .” It has a major presence in Japanese pop culture.
The main hero, Amuro is a “new type” with supernatural powers that others do not have. Thus, he’s ejected and forced to fight a war in space. Since he cares for others, he plunges in to the fight.
However, he is considered as being different. He encounters rejections and suffers alienation.
Around the same time, he encounters another ” new type.” They truly understand each other, but eventually they fight each other as enemies.
Amidst conflicts like these, Amuro grows up as a considerate being with kind heart, and we saw similar characteristics and vulnerabilities reflected in the struggles and hurts faced by children with ASD. For that reason we picked the name Amuro for the parent support group. It helps in better understanding of the suffering of children with developmental disabilities and to cultivate the potential abilities of those children. It also helps them ease the transition into the society. As an added bonus, I think for children with developmental disabilities, who like mechanical stuff such as Gundam, the name provides them with something fun. Our club can offer benefits for both parents and children.
With parents in similar situations and difficulties on the one hand and children with similar types of disabilities for the other, we’d like to keep the two pillars and nurture them.
ASD cannot be easily detected by outward physical appearance. The symptoms are subtle and vary widely between individuals, which makes it difficult to diagnose and quantify the disorder. Among those sufferers, a common trait is that they are slow learners and deficient in communication and social skills beyond reasonable expectation. Therefore, these children experience failure in various situations from infancy. As a result, they have low self-esteem, and grow up under constant stress.
They are very poor at communicating the difficulties that they are facing or how they are hurt. Even parents and teachers at school who desire to support them tend to misunderstand their attempts at communication. Accumulated frustration will affect their schoolwork and may secondarily affect their character development. It is likely that the problems will “snowball” out of control.
In a family with an ASD child, siblings may feel neglected which results in conflicts with parents. Bad feelings may arise among spouses due to difference of opinions in parental and educational policy choices. Another source of problems stem from the many and sometimes conflicting theories and proposed remedies, because the science of ASD is fairly new. The information is not necessarily shared fully and the symptoms cannot be measured by numerical values, either.
As a consequence, it is difficult for parents and relatives to decide on a path for their child’s development. Some may believe in what the expert says, while others may reject the expert’s opinions. An inappropriate choice could result in a vicious circle of problems that can overwhelm a family. The stresses caused by these conflicts may creep on both parents and children and may give them feelings of being stuck in mazes of never ending traps.
Raison d’être of “Raising Amuro Club”
Therefore, we strive to provide club members with an environment in which they can unburden themselves once a month. Suitable childcare is available during the meeting. Participants can talk frankly without worrying about being judged. We can nod and say “That happens,” “I know” in sympathy. Furthermore, we can even boast about their small achievements.
We are not professionals and we do not expect this gathering to solve problems. Each of us has different needs and goals. It will help us feel like a weight has been lifted off our shoulders by knowing “there’s no right answer for nurturing.” Sometimes we can get a hint from the experiences of others who are raising a child with a different kind of problem. When we are depressed, these kinds of things help a lot. For children with developmental disabilities, there is no model such as “for this age, this will happen” as for healthy children, so it’s difficult to chart their future. However, by listening to stories from others, we can begin to hope for a better future. Hope can help us persevere through our difficulties or motivate us to start something new.
Lots of Support from JSS
To secure our precious time for this gathering, ASD-suitable childcare is indispensable. We aim for one-on-one supervision. These children need help to adapt to an unfamiliar environment and their care requires special techniques. Qualified professionals occasionally observe our meetings and advise us on special cases. To provide an appropriate level of care, new volunteers receive orientation briefing. Volunteers meet every other month to share techniques and to observe. We are very grateful to JSS for integrating our club into their volunteer program. As you may be aware, most volunteers are persons on a working-holiday program and soon leave to go home. We therefore need a constant stream of new volunteers.
In addition, JSS helps with the insurance and the rent for our meeting place. We also thank the JSS for counselling support. Being under great stress, both parents and children sometimes need counselling. As ASD occurs much more often with boys we are extremely grateful to the JSS for providing access to a male counsellor like Mr. Kuge, since he is experienced at taking care of children with ASD.
Thank you so much!
Thus, with the support of many people who helped in various ways we somehow launched our club. We really appreciate all of their efforts. Over the last three years, I noticed that the “Raising Amuro Club” which exists solely for the purpose of introducing people in need to people wanting to help, may already be a sufficient raison d’être.
We’re grateful for your support toward the “Raising Amuro Club” now and into the future.
If you’re interested in getting in touch with us, please contact us at the following e-mail address;