The story of Hikaru Azuma and his family continues in the fourth installment of the With The Light: Raising An Autistic Child manga series. As Hikaru enters the later elementary school years, his family begins looking for more ways to increase his independence and to help him get ready to become a working adult. Initially the family's difficulties are compounded by Masato's transfer to a dead end job in a hard to reach location. However, the family perseveres and Masato is eventually transferred back because of some ideas that stem from their search into options for Hikaru's future.
Impression: I enjoyed this new volume in Hikaru's journey, partly because we're at the stage in my house where we need to start looking into my son's future and he is expressing a desire to go to work. But the volume also gave the reader a wider look into the lives of Hikaru's friends, and while not all the revelations were pleasant, it was nice to see beyond the family and into other character's lives. There was also some setting up for what I expect to be issues in future volumes: Hikaru's current teacher is getting ready to retire and it will be interesting to see if she retires first or Hikaru moves to a new school first. Either will provide challenges for the family, but having the teacher retire first and then Hikaru being promoted will, if Hikaru is typical, be more challenging as autistic children have difficulty with changes and this would be two changes practically one on top of the other. In general, this book is a bit of a lull for Hikaru as the greater stress is on his family and friends. And this too is a part of the autism puzzle.
I still highly recommend the series to anyone curious about autism and its affect on families. Readers just need to keep in mind the cultural differences. With the Light is based in Japan, and much of what is done there is either not done here or done differently, and many of the difficulties the book shows being experienced by families with autistic children in Japan are not experienced here. But with those things in mind, the series is an excellent window into the lives of families dealing with autism.
The story of Sachiko and Masato and their autistic son, Hikaru, continues through Hikaru's later elementary school years with some new challenges and experiences. Hikaru gets sick for the first time and goes to a camp with his class for a few days. Continuing challenges include Hikaru's teacher, who continues to expect more from her autistic students than can they can realistically achieve, particularly in their emotional responses. There are also new problems that have no relationship with Hikaru: Masato is transferred to a job that makes less income because of a supervisor who wants him out of the office, and ends up getting drunk. Sachiko also continues to have problems with her mother-in-law, who tries to take Kanon, Hikaru's sister, from her parents to raise her in a way she deems more appropriate. The family continues to rely on each other, neighbors, friends, and community resources to make it through each new challenge.
Impression: For some reason, I wasn't as impressed with this volume as with the previous two. It's still a good series, but there seemed to be some inconsistency this time around. For example, Hikaru, like most autistics, is fairly rigid when it comes to routines, yet there were actually very few problems on his trip away from home. From the way Hikaru has been portrayed in the past, he is much like my son when overwhelmed by changes and tends to melt down not only more quickly but also more dramatically. My son is in high school and has only recently begun to manage some control over that. This is just one example of the "little things" that struck me as off this time around.
But the story is still good, and the family's internal support and reliance on outside resources is very realistically portrayed. Raising an autistic child is a tough job, and all of us who are doing it need to find supports and resources to help us keep our sanity and to make it through the challenges. The story also continues to raise awareness of autism, its affect on the children, and the struggles of the families raising autistic children.
Sachiko, Masato, and Hikaru have come a long way since Hikaru was diagnosed with autism. Sachiko has found the support she needs and managed to place Hikaru in an understanding school with an autism classroom. There are still bumps along the way--people who do not understand what autism is and want to blame the parents for how Hikaru behaves, but they are generally in a very good place. He's in a classroom with an excellent teacher and a supportive principle, and even Masato is dealing with Hikaru's particular behaviors better. He has reduced his expectations for his job and become more supportive of his wife and son.
But Hikaru is growing and some of his behaviors are changing. He's starting to wander more and be harder to keep track of, which gets him, and his parents, into trouble with neighbors and local businesses. And when Hikaru's teacher marries a fellow teacher at the same school and gets transferred to another school, and the principle dies of a heart attack, new problems begin. The new teacher doesn't understand her special needs children--a position she took because she thought it would be easy. And the new principle is more concerned with appearances with his bosses than with the needs of the children or the concerns of the parents. Sachiko and Masato find themselves struggling once again to make sure their son's needs are met.
Impression: As with Vol 1, I'm quite impressed with With the Light. I'm particularly in touch with that feeling of needing support and struggling to find it. I think my only problem with it is how frequently Hikaru gets away from his mother--I think most parents of disabled children who "get away" frequently tend to be more aware of where their child is and more watchful than Sachiko was made out to be. But even that does not reduce the enjoyment or informative nature of the story. The plight of parents with autistic children is still very clearly portrayed. As in the previous volume, there are cultural differences that are both interesting and sad since they show how the experience of parents of autistic children is so much harder in Japan. Overall, though, it's a wonderful book that I highly recommend. I am anxious for volume 3, which comes out in September.
Masato and Sachiko Azuma welcome their newborn son with joy. Born "with the morning light", they name him Hikaru, which is Japanese for "To be bright". But almost from the beginning, Sachiko notices that something isn’t quite right with her son. He doesn’t like to be held, he appears not to hear, and has other behaviors that disrupt their home in ways they did not expect with a newborn. Worse, nothing Sachiko does seems to help reduce the problems. Masato starts working more and becomes less involved, blaming her when he can't sleep. Her mother-in-law blames her for the problems Hikaru appears to be having because "children grow up as they are raised". Even her friends in her mother's group don't understand the difficulties and begin to withdraw from her.
Alone, blaming herself, Sachiko is surprised to learn that her son may have a disorder known as autism. She's never heard of it and it seems so farfetched that at first she refuses to believe the possibility. But, as Hikaru's problems and developmental delays become more and more apparent and separate her more from others, including her own husband, she realizes that she needs to look into the diagnoses both for her own sake and her son's.
Impression: Vol. 1 of With the Light chronicles Sachiko's and Hikaru's journey through the maze that makes up the diagnoses, treatment, and living with someone with autism from birth through Hikaru's early elementary years. Because it's a manga, much of how it covers the disability is simplistic, but it still manages to do an excellent job of educating the reader on what autism is and how it affects everyone involved with someone who is autistic. As the mother of an autistic boy myself, I was able to relate to the feelings of doubt, the isolation, and the joys that coping with the disability can bring.
The only warning I have about the book is that it is clearly from a Japanese perspective and the culture surrounding disabilities is very different. For example, most, if not all, schools in the U.S. have classrooms for disabled students, so a mother of an autistic child does not generally have to go out of her district just to find one. There may not be a guarantee the class is the best for her child, but there will be a class to place him or her in. Services can be hard to find, but they are not nearly non-existent, and, generally speaking, special ed teachers in the U.S. are required to have special ed training at the college level.
Beyond that, With the Light is a heartwarming story that clearly explains what autism is and how it affects everyone involved. You can't help but feel for Sachiko as she struggles to make those around her understand that she's not a bad mother, but that her child has a specific disability that affects his behavior. At this stage, the journey is often frustrating as she tries to reach out to people who can help and tries to find ways to reach her son behind the autism wall. The art is generally very beautiful, and the writing easy to follow even for first time manga readers. And the volume includes a couple of personal essays from those who are grappling with the autism puzzle.
My youngest daughter even read it and came away with a new understanding of what her brother needs. I highly recommend With the Light.
Written by a parent of an autistic child, Living to Live with High functioning Autism explores the experiences of a family with an autistic child and uses those experiences to advise both professionals and other families. The book draws on the family's personal experiences, the experiences of others, and the comments of autistics themselves.
Impression: While there were many good things about the book and I did learn a few things i didn't know, the book didn't address the concerns I had picked it up for: what to expect and how to deal with an autistic child going into puberty. Much of the "advice" was too general to be useful. And too much of the advice seemed geared to changing the systems that are supposed to help families with an autistic member than to learning how to manage our situations now. While I understand we need to educate those who work with autistics, what I was looking for was a book that could help me deal with upcoming events in my own son's life, something to help me know what to expect. I also think for professionals that much of the material in the book would be things they know - that autism is lifelong, that autistics need individual solutions, and so on. Overall, I found the book to be less useful for me than for other professionals, but probably not all that useful for the professionals either.
Unless otherwise noted, all books reviewed have been purchased by me.
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