There’s a scene in “Peppa Pig,” the wildly popular children’s cartoon, where the well-meaning but bumbling Daddy Pig steps on one of his kids’ toys and is sent flying across the room before landing on his backside. When this happens, Sam O’Brien leaps off the couch, clutches his feet and explodes with laughter.
Sam signals to his mother to play it again. She does. Daddy Pig goes flying; Sam explodes with laughter.
He looks up at his mother: Play it again, Sam signals.
Three-year-old Sam deploys a wide variety of signs: “Mommy” is made by opening his hand and touching his thumb to his chin. For “Daddy,” his thumb is placed on his forehead. For “water,” he makes a W with the fingers of one hand and bounces it off his chin.
Sam was born with Down syndrome, a genetic disorder that affects his growth and intellectual ability. It also affects his speech, which is why his parents have been helping him learn sign language — to combat the frustration he feels when he can’t communicate in English or Japanese.
Neither Carl, 32, or Elizabeth, 33, who met while studying at Northwestern College in Minnesota and now live in Nara Prefecture, knew Sam when he was born. The O’Briens had been trying to have children of their own but couldn’t conceive. They thought about pursuing different treatments and options, but they didn’t feel it was right for them.
“We felt like adoption would be good, seeing as there are waiting kids already,” Elizabeth says. However, the route to adoption is never straightforward, nor is it automatic. Together and individually, the couple questioned why they wanted a family.
“For me, was it that we could finally fill that empty feeling? ‘We have a child that, you know, would love us and call us Mommy and Daddy,’ or is it because we have love to give away?” Elizabeth says.
Beginning in 2013, they contacted several adoption agencies in Japan and were referred to Ai no Kesshin, a nonprofit care home based in Shizuoka run by Christian missionaries.
From the beginning of the consultation period Ai no Kesshin had asked the O’Briens to consider the possibility of adopting a child with a disability.
In the spring of 2014, after a six-month consultation period with Ai no Kesshin that included numerous meetings in which they were vetted separately and together, and “in which they asked every single kind of question you can think of and then some,” the O’Briens were approved for adoption. However, they were informed that Ai no Kesshin only had babies with a disability for adoption.
“That really made me think about our motivation: Am I doing this because I always wanted to be a mom or is it because there is a need out there and we can do something about it?” Elizabeth says.
Ultimately it was a choice of whether they were doing it for themselves or for another human being.
“If we are adopting because the child needs us, then the perspective changes: We are adopting in order to help someone else, to give them love and attention,” Carl says.
They had one meeting with Sam before he came to live with them in June 2014 aged 8 months.
Neither of the O’Briens had a rose-tinted view of what Down syndrome meant, and they understood that things would be difficult, but no amount of reading or consulting prepares you to be a parent. But this is something all parents (belatedly) recognize: You’re never ready.
Forging a bond between mother and son was difficult in the first few months, Elizabeth admits, especially as she had not been through a pregnancy.
“I felt more like a babysitter,” she says. Gradually, through quotidian things like introducing Sam as “my son,” that bond grew stronger.
Sam is, in so many ways, just like any toddler: He gets tantrums; he throws his toys about; he climbs every piece of furniture he can scale; and he can steal the show, as when he takes the center of the living room to beat his chest like a gorilla.
Carl, who works as a preschool teacher, says that one of the biggest differences between Sam and other kids is that he doesn’t have a “filter.”
“Every feeling that he has, other kids have, and every feeling that other kids have, he has. The difference is that when Sam feels something, it’s 100 percent. When he’s upset, he’s upset, and when he’s happy, he’s just over the moon, and when he’s sad, it’s heartbreaking.”
Overall, Elizabeth says, caring for Sam is not harder than she expected. Granted, he goes to the doctor more often, he’s more susceptible to colds and he wears himself out quicker. His parents also need to factor in more time for everything from getting ready to go out to eating meals. But she also admits that being a first-time mother, she doesn’t have anything to compare it to. In effect, she just gets on with it. They both do.
They are grateful for the community and social support, especially as both their families live on the other side of the Pacific. Sam is enrolled with a toddlers’ group at a local kindergarten, he has speech and occupational therapy twice a month, and twice a week he goes into Nara for play therapy, which he loves.
“The support system’s been critical for us. I couldn’t do this if I didn’t have the community support that I do,” Elizabeth says, acknowledging the assistance they get from friends, their church, therapists, teachers and local government workers.
Like many parents with disabled children, they get their fair share of compliments, many of them variants of “We could never do what you do.”
“But you could,” Elizabeth says.
As a mixed family, they also get their fare share of stares and questions, but as Carl points out, that’s nothing new.
“I’m 194 centimeters tall and have green eyes; I get stares already,” he says, only half-jokingly.
The family court approved Sam’s adoption in January 2015 after a mandatory six-month trial period, which involved liaising with a court-appointed case worker. Along the way, Sam got the name he has now, in addition to the one given to him by his biological parents.
Elizabeth and Carl are keen to raise Sam in Japan. Although their working visas only allow to them to stay on a yearly basis, the couple envision themselves retiring in Japan. They are in the process of adopting a second child, a daughter, but it’s taking a little longer as she has had heart surgery.
“That’s another reason we want to stay in Japan with our family,” Elizabeth says. “To show that it can be done; there is community support, good medical facilities. Beyond that, we’re here to support each other and take care of each other and show you don’t have to be ashamed of having a child with a disability.”
Rearing a child — any child — is as much about learning as it is teaching. Elizabeth says that “one of the biggest things they’ve come to realize” is the inherent value of each human being.
“First and foremost these are people. They’re not ‘that Down’s kid’ or ‘that wheelchair kid,’ they’re a person who happens to have a disability, and so, because they are people, they have value and they matter. It’s such a waste of their life to be locked away in an institution when Sam can be a contributing member of society, but also he’s valuable because he’s a person.”
If the O’Briens’ thoughts and experiences of raising a child with disabilities represent enlightened and compassionate thinking, then the deliberate and horrific killing of 19 adults with disabilities at a care home in Sagamihara earlier this summer represents its absolute opposite.
Naturally, the O’Briens have concerns for Sam, especially about what would happen if something were to happen to them: Who would look after him? But they also have the hopes and dreams that every parent has for their child.
As I am leaving the O’Briens’ home, my hand on the front door, Sam, hoisted high in father’s arms, says, “I love you” to me.
And you are loved too, Samuel Riki Kishin O’Brien.
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System leaves thousands of potential adoptees in institutions
In 2014, Human Rights Watch Japan published a critical report of Japan’s child care system, urging the government to overhaul how children are cared for. According to HRW Japan, the “overwhelming use of institutions instead of family-based care is ailing thousands of vulnerable children by not preparing them for independent, productive lives in Japanese society.”
The report concluded that the present system of care “harms the well-being and healthy development of children and infants, and is contrary to international children’s rights standards.”
Kashimi Yoshida, a researcher who studies adoption at Ritsumeikan University’s Kinugasa Research Organization in Kyoto, acknowledged that adoption rates in Japan are low by international comparisons. Between 1988 and 2015 an average of 460 special adoptions (tokubetsu yōshi engumi) were approved annually by family courts in Japan.
“In Japan, there are approximately 46,000 children in need of care and almost 90 percent of them are placed in institutions,” Yoshida says.
She believes adoption rates could be improved by establishing an effective public system for adoption arrangement services in order to support pregnant women with problems, overhauling the koseki (family registry) system and updating child custody laws so that children aren’t kept in institutions long-term.
Besides this, “adoptive parents’ openness and readiness for (possible) disabilities of adoptees is very important,” says Yoshida.
In Japan there are primarily two routes to adoption: through the public system or through an agency, some of which, like Ai no Kesshin, also double as care homes.
Yoshida’s advice to parents is to choose carefully.
Sophelia Lee, an Australian mother who has adopted a Japanese son and has volunteered at care homes for a number of years, says that for parents interested in fostering or adopting the first point of contact should be the local child guidance center (jidōsōdansho).
“Each center has it’s own peculiarities and rules — some require parents to be over 40 and some under, for example. If the local center is off-putting, there are a number of private agencies as well, some of which have English speaking staff and experience with intercultural/ international adoptions,” Sophelia says.
Sophelia has written extensively about the adoption process in her blog, precisely because there was so little information when she and her husband decided to adopt.
“It can help to connect with online communities like Foster/Adoption in Japan,” Lee said.