A Heart-Connecting Space Supporting Parents of Children with Developmental Disorders InsightsEssays: Civil Society in Japan

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Posted on August 30, 2024

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A Heart-Connecting Space Supporting Parents of Children with Developmental Disorders

 

 

“This salon is so much fun; I wish I had known about it sooner.” This was my first impression after attending the Hattatsu [=Development] Parenting Salon as a reporter. As I reflected on my own past, a sense of longing washed over me.

My daughter has autism spectrum disorder (ASD), and for the ten years after she began withdrawing from society, I felt helpless, with no clear solutions in sight. Looking back, I wanted to tell my past self, “There was this amazing salon you could have gone to.”

The salon I visited was organized by Izumi-shi Te-o Tsunagu-kai [the Izumi City Parents’ Association for Children with Intellectual Disabilities] (hereinafter referred to as the Parents’ Association). It was held on July 18, 2024, at the Izumi City Plaza in Izumi City, Osaka Prefecture, and was sponsored by the Izumi City Board of Education.

The purpose of the salon is to provide a monthly gathering space for families with children who have developmental concerns, where they can share their experiences and take small steps forward. The salon has two distinctive features:

• Open to all: Membership is not required, and anyone can participate freely.
• Flexible schedule: Participants can come and go as they please within the session time.

This flexible style allows parents to attend based on their child’s needs on that particular day, making attendance difficult to predict. As the four officers in charge of running the salon prepared snacks and drinks, they waited for participants at a leisurely pace. “Some days, no one comes,” said Ms. Emi Ueda, one of the Parents’ Association officers, with a gentle smile.

 

Participants Share Their Concerns with Each Other

As the clock struck 10 a.m., five mothers arrived one by one. Each participant then introduced themselves in turn, sharing their current concerns, often focusing on their child’s situation.

Topics ranged from school absenteeism and academic struggles to finding comfortable places outside of school for their children. They also discussed how to create suitable environments for their children and how to spend the summer vacation. Whether participants or officers, everyone shared their experiences and discussed openly. A mother who joined later also felt welcomed and was able to participate in the conversation without feeling awkward.

As time went on, the participants, who had initially felt a bit tense, began to open up about their challenges. The tension eased, and a warm atmosphere gradually developed. Whenever someone shared something, everyone listened attentively.

 

Loneliness Felt During the Pandemic

Before the salon started, Ms. Ueda shared a story about the difficulties faced by mothers with young children during the pandemic. She explained how children who are now elementary school age missed out on crucial opportunities for social interaction during their preschool years. She also discussed the challenges of taking their children to public playgrounds, where their children’s unique characteristics might be misunderstood by other families, leading to early departures. It’s easy to imagine the loneliness these mothers faced.

In the salon, as soon as one parent shares a challenge, others quickly chime in with their own experiences or advice. There’s a palpable sense of relief and connection as these parents reconnect after the pandemic. They openly discuss their ongoing concerns and eagerly seek solutions together. What unites them is their shared experience of raising children with unique needs and sensitive natures. With empathy and care, they offer small, practical suggestions, always keeping their children’s feelings at the forefront.

Mothers want to do everything they can for their children, but there’s a limit to what they can do. For a child who’s easily hurt, the bond they have carefully cultivated can be broken in a heartbeat, especially when a parent’s emotional ups and downs are directed at them. Even so, mothers long for their children to experience the richness of social connections and discover the vastness of the world outside of school. They are desperately seeking ways and places where their children can interact with the outside world without feeling pressured. The salon members, including both participants and board members, are united by a common desire to meticulously investigate and exchange information on what they consider to be the “best” approach for their children. As a result, they proactively establish connections with a wide range of organizations such as Izumi City, special needs schools, after-school day services, and both public and private services, aiming to identify feasible options that allow their children to participate. Additionally, when a medical certificate is necessary, they encourage the mother to act by providing specific advice on how to communicate their difficulties to the doctor.

 

Board Members Leveraging Their Strengths

“Our parents’ group, established 50 years ago at the request of Izumi City, has maintained its original stance of members helping and supporting each other,” emphasized Ms. Tomoko Minami, who joined the Parents’ Association several decades ago and has served as its chairperson for the past five years. Izumi City has always been known for its comprehensive welfare services, a factor that prompted Ms. Minami to relocate to the city.

The other board members also actively contribute to the management and activities of the Parents’ Association, each utilizing their unique strengths. Ms. Kaori Fujii, the vice chairperson, provides steadfast support to the chairperson and offers a wealth of information. Ms. Chikako Araki is responsible for social media postings and creating flyers, while Ms. Ueda gently listens to the concerns of members and visitors and explores potential solutions. These four dedicated board members offer unwavering support to participants as they navigate their daily challenges, always prioritizing the well-being of the children.

 

(from left) Ms. Fujii, Ms. Minami, Ms. Arai, and Ms. Ueda

 

Ten years ago, my greatest desire was to have a support network like this salon, where I could connect with others and share my worries. Back then, I struggled alone, trying numerous approaches to help my daughter, but nothing seemed to work. Both my daughter and I were consumed by a profound sense of loneliness. It felt like we were trapped in a never-ending dark tunnel.

 

Future Prospects

With the enactment of the Act on Support for Persons with Developmental Disabilities in 2005, followed by its revision in 2016, the establishment of support centers for individuals with developmental disabilities has been actively promoted. As a result, Osaka Prefecture has seen a significant improvement in the availability of support services, including consultation and developmental assistance.

While the provision of physical resources has accelerated, the role of salons like this one, where individuals and families can share their common concerns, is crucial in addressing the emotional needs of those involved. The daily care of children with developmental disabilities and the sharing of reliable, locally sourced information—more trustworthy than information found on social media—are both invaluable. Furthermore, these monthly gatherings serve as a source of encouragement and support for participants as they navigate their future.

The Parents’ Association also organizes an annual bus tour for its members, which has become a popular event. In fact, some children who have participated have even written essays about how much fun they had and presented them at school. After sharing their concerns and worries at the salon, many participants appear noticeably more cheerful and optimistic.

The Parents’ Association, united by the strong belief that “we should all join hands to support children, regardless of their disabilities,” has established various subcommittees, including one for children with intellectual disabilities and another for those with physical disabilities. By distributing flyers at schools and collaborating with 23 organizations and the Izumi City Social Welfare Council, the group has been actively expanding its network to reach out to children and families facing challenges. To commemorate its 50th anniversary three years ago, the Parents’ Association organized a grand ceremony.

When mothers have concerns about their child’s development and are considering a medical checkup, they might find it helpful to talk to other mothers with similar experiences before consulting a public institution. These conversations can provide a valuable starting point for their next steps.

By sharing their experiences and finding common ground with other local mothers, they can gain invaluable firsthand information, such as “I’ve been in your shoes,” “I know exactly what you mean,” or “Mx. X at Y school is a great listener.”

This wonderful salon provides a warm and supportive environment where mothers can take the next important step for their children. I left feeling truly grateful and inspired.

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Original text by Noriko Irie ((JNPOC volunteer writer)) originally posted on August 19, 2024; translated by JNPOC.

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