How-tos | LIFELINES

Raising kids in Japan, with extra challenges: Foreign parents of children with physical or learning difficulties share their stories

by Louise George Kittaka

Raising kids as a foreign parent in Japan is no picnic, but what about when your child is also coping with physical or learning challenges? Lifelines talked with several parents in this situation after a foreign dad contacted us, eager to share his experiences.

These mothers and fathers aren’t looking for sympathy or gold stars; they just want to raise awareness of the issues that they are dealing with, in the hope it will help other parents. Here are their stories.

Stay strong for the family

Narayan Stevens is a New Zealander living in Osaka, and the reader who initially reached out to Lifelines. The single dad has a teenage daughter with spinal muscular atrophy, a rare neuromuscular condition that causes progressive muscle weakness and loss of movement. Stevens’ daughter was diagnosed at the age of just 4 months with Type 1, the severest form. The disease has progressed to the point where she is living permanently in a hospital, but Stevens remains very much involved in her care.

Dealing with the reality of his older daughter’s issues took a toll on Stevens’ marriage. His former wife’s Japanese relatives showed little interest or support, he says, and the sense of isolation exacerbated the situation. While her mother and younger sister still have frequent contact with the teenager, Stevens became her main caregiver.

Stevens recounts struggles with local educational authorities when his daughter turned 6.

“At first she attended a regular school,” he says. “In the beginning it was a tough battle and we got rejected by the local school many times. However, her doctors were fully supportive, attending many meetings with the school, and she finally got accepted.”

Ongoing discrimination from the local community led to the family moving house and changing schools again, before the disease progressed to the point where living at home was no longer feasible. His daughter now has teachers who come to her bedside in the hospital, and Stevens praises their patience and dedication.

Stevens advises other parents to accept that they may face some degree of isolation in Japanese society with a child who is “different,” but to focus on the positive and stay strong for the sake of the family.

Seek out services yourself

Kate Miyagawa, a British mother of three in the Kanto area, has also struggled with getting the right support for her preschool-age daughter, who has Down syndrome.

“It has been frustrating, wanting my child to be in an inclusive school environment but living in a country where that’s not really possible,” she says. “Also, depending on what city you live in, different services are available. For example, I wanted my daughter to start speech therapy as early as possible but our city only offered it from 3 years old and even then, it was only every few months.”

With regards to information on available services, Miyagawa says, “I found that rather than help and information being given, you have to actively seek it out.” On a positive note, Miyagawa feels that people have been “very accepting” of her daughter in general.

Benefits of bilingualism

Fellow Brit Patrick lives in Aichi with his Japanese wife and two children.

“Our son is on the milder end of the autistic spectrum. His big challenge is to be able to concentrate on study when in a regular sized-class,” says Patrick, who asked to use a pseudonym due to privacy concerns. “When he was younger he had pronounced social anxiety for a time, and experienced delays in both spoken languages. Like the rest of our family, he is bilingual.”

Patrick challenges the idea that a child with autism should be restricted to one language as a matter of course.

“Rather, the research consistently suggests that not only is being bilingual not harmful to development, it may confer some benefits for autistic children,” he explains. “Your child will gain more from modeling the comparatively rich language of your native language, as well as from being connected to your wider family and culture.”

Patrick now participates in an online group where bilingual families raising children with learning issues can offer each other support and advice.

A lifelong commitment

In many cases, caring for a child with special issues does not end when they become an adult. American Carolyn Morikawa of Tokyo is the mother of a 30-year-old daughter coping with both cognitive and physical disabilities, as well as epilepsy. Her daughter relies on a wheelchair to get around.

Before the young woman graduated from her public special-education high school, the family had the chance to look at various options for post-graduation, which helped them select the day facility their daughter currently attends during the week.

Morikawa is satisfied with the level of government support available.

“The services a person with a disability qualifies for depend on the severity. For children under the age of 20, the income of the family is also taken into consideration,” she says.

“As our daughter’s cognitive disability is quite severe, she receives a disability pension and several allowances from the government. She also has a special health insurance card, so most of her medical expenses and medications are free.”

Among the services she qualifies for are seven “short stay” days a month, which can be extended when Morikawa travels abroad to visit her family.

The biggest issue now is finding permanent residential care for their daughter.

“As my husband and I are getting older, we have been looking for a suitable place for several years,” Morikawa says, “Adults with milder disabilities can find group homes rather easily, but it is difficult when the person’s disabilities are severe or when there is a chronic medical condition.”

In addition to proactively seeking out support in the local community, Morikawa encourages international parents to connect with others facing similar issues, and she currently leads a support group for parents caring for adult children.

For foreign parents, support is out there

Nikolai Kawabata Jessen-Petersen is a graduate student at Tsukuba University and the son of Japanese and Danish parents. He is researching the experiences of international families in Japan with special needs education and is building a multilingual website with helpful resources.

Jessen-Petersen would like to hear from any parent whose child is coping with some kind of challenge, both Japan-based foreigners and Japanese with experience of living abroad. He also welcomes suggestions for the website, including information on schools, after-school and enrichment programs, health professionals, counselors, support groups and government services. His email address is njessenpetersen@gmail.com.

Here are some other English resources:

Tokyo Parent Child Learning Group

A support group for parents with children and teens with learning differences such as ADHD (attention deficit and hyperactivity disorder), ASD (autism spectrum disorder) and dyslexia. There are regular monthly meet-ups, as well as a Facebook group. Participants of any nationality are welcome.

Email: tokyoparentchildlearninggroup@gmail.com

Special Moms Tokyo

A group for parents of older teens/adult sons and daughters with special needs, with regular face-to-face meetings and a Facebook group. Despite the name, parents of either sex and those living in all parts of Japan are very welcome to participate.

Email: ccamorikawa@yahoo.com

Bilingual Children with Developmental Differences

The Facebook group mentioned above in the section about British father Patrick can be found at www.facebook.com/groups/155717381272532.

Kiwi Louise George Kittaka has been based in Japan since she was 20. In the ensuing years she has survived PTA duty for three kids in the Japanese education system and singing live on national TV for the NHK “Nodo Jiman” show, among other things. Send all your questions and comments to lifelines@japantimes.co.jp.