What is a Sibling of a Child with Special Needs? Comprehensive Explanation by Those Affected: Challenges, Young Caregivers, Marriage Concerns, and Available Support!

The term "kyodai-ji" refers to individuals who have siblings with disabilities.

In the past, society tended to focus on the care of people with disabilities, but recently, it has been recognized that kyodai-ji also need care.

This article will introduce what kyodai-ji are, the challenges they face, and more, based on the author's personal experiences as a kyodai-ji with a sister who has a severe intellectual disability (Down syndrome).

1. Kyodai-ji are children with siblings who have disabilities

Kyodai-ji refers to individuals who have siblings with illnesses or disabilities. (There are various terms for siblings of people with disabilities, such as "kyodai," "kyodai-ji," and "kyodai-sha" for adults, but in this article, we will use "kyodai-ji" regardless of age.)

Currently, it is reported that Japan has approximately 11.6 million people with physical, intellectual, or mental disabilities. Additionally, the average number of children per household with children is 1.66, according to statistics.

From this, it is estimated that there are about 8.14 million kyodai-ji in Japan, meaning about 6.5% of the population are kyodai-ji.

However, this number is a simple calculation based on data and is not an exact figure.

Reference: 2023 Edition Disability White Paper | Cabinet Office
Reference: 2022 National Survey on Family Life | Ministry of Health, Labour and Welfare

2. Why "kyodai-ji" is written in hiragana

"Kyodai-ji" is written in hiragana due to the multiple ways to write it in kanji.

Kyodai can be written as "兄弟" (brothers), "兄妹" (older brother and younger sister), "姉妹" (sisters), "姉弟" (older sister and younger brother), etc., with "兄弟" being the most commonly seen. However, this tends to give the impression of being limited to brothers.

To represent all siblings of people with disabilities, "kyodai-ji" is written in hiragana.

3. Challenges and issues faced by kyodai-ji

3-1. Prone to becoming adult children

Adult children are defined as "adults who grew up in dysfunctional families." It does not mean people who are childlike and unable to become adults.

It is said that those who grew up with abusive parents or parents with issues like alcoholism tend to become adult children, and kyodai-ji also have a tendency to become adult children.

Seeing their parents struggling with caring for a child with disabilities or dealing with worsening conditions, they feel they must not cause worry or be a burden. The home becomes a place of suffering where they must endure, rather than a safe and healing environment.

There are six types of adult children.

The author often fits into types ① to ③. I have rarely seen kyodai-ji who fit type ⑥. (※This is a personal opinion.)

For all types, as the tendency to become adult children strengthens, they become unable to value themselves. Additionally, they tend to become mentally unstable, and some develop mental illnesses. The author has suffered from panic disorder since the age of 15 and has not fully recovered.

3-2. Tendency to prioritize siblings as young carers

Depending on the severity of the disability, kyodai-ji often become young carers and prioritize their siblings.

The author has assisted with my sister's toilet, bath, meals, and even helped her up during epileptic seizures, among other things.

As a result, I often stayed home on days off, living in a constant state of vigilance.

It wasn't that my parents forced me to do it.

I wanted to help my parents who seemed overwhelmed and my sister who seemed to be struggling. I felt that I had to do my best.

In other words, I was in an environment where I had no choice but to become a young carer.

3-3. Not understanding what "normal" is

Having a child with a disability in daily life becomes "normal" for oneself.

However, there are many instances where I wonder, "What is a 'normal sibling,' 'normal life,' or 'normal family' in general?"

Due to restrictions like always having to accompany them to the hospital, not being able to go out to eat or travel, and having to provide care, I often think this way.

3-4. Potential barriers in life stages such as employment, marriage, and childbirth

Kyodai-ji may face difficulties in various life stages.

In employment, due to strong parental wishes, they may find themselves in situations where they have to take welfare-related jobs, or due to the extension of being a young carer, they may have to become caregivers themselves, leading to inability to find employment or the necessity to stay local.

In marriage and childbirth, there are actual cases where they are asked by their partner or in-laws, "Is there any genetic risk?", which can ultimately prevent marriage.

Fortunately, the author was able to secure a job at a general company as a new graduate and is currently working as a writer. However, there was a bit of a commotion during the marriage process. Through my husband (then fiancé), my in-laws asked if I could investigate whether my sister's disability was genetic because they were worried about future children.

For me, it was common knowledge that Down syndrome is not a genetic condition but a result of chromosomal mutations, so I was very upset at the time.

However, thinking that I couldn't get married without investigating, I reluctantly told my parents about it and asked them to check. My mother went to the hospital where my sister was born, got the records, and had the doctor explain once more that it wasn't genetic.

After conveying those results, I was able to get married.

Looking back, I realize that the fact that Down syndrome is caused by chromosomal mutations is not common knowledge, and it was natural for my in-laws to be concerned.

However, I feel very down thinking that if it had been a genetic form of Down syndrome (there is a genetic type called "translocation"), I might not have been able to marry.

Regarding childbirth, I have a son who was born healthy.

3-5. Pressure of caring for siblings after parents are gone

The concerns of kyodai-ji continue even after the parents are gone.

Many may feel the pressure that they will have to take care of their siblings after their parents are gone.

Even if the sibling is placed in a facility, as the blood relative, the kyodai-ji will naturally have responsibilities such as handling paperwork and regular visits.

My parents have told me, "After we're gone, your sister will go to a facility. You don't need to worry about anything," but I am very anxious.

My parents, now nearing 70, want to care for my sister themselves as long as they are alive and have not even listed potential facilities.

It seems they won't look for a facility until they can no longer manage, so my brother and I will likely have to find one.

However, I plan to continue having patient conversations about my sister's future, including checking on the facility search situation.

3-6. Prejudice from others and society

What particularly concerns kyodai-ji is the prejudice and curiosity from others and society.

Especially during childhood and school years, which are sensitive times, it might be difficult to talk to friends or partners.

There is also the societal pressure to become the "supportive sibling of a disabled sibling" as the ideal.

Until I graduated high school, I never told even my closest friends that I had a sister. I was afraid that if I did, they would look at me with prejudice and leave me.

3-7. Inability to share worries and feelings of distress

As the data showing that about 6.5% of the population are kyodai-ji indicates, being a kyodai-ji is a minority in society.

Therefore, it's hard to find acquaintances in the same situation.

This means there is no place to share the unique worries and feelings of distress that kyodai-ji experience.

This was exactly the case for me, with no one to consult, and I didn't even have the idea of consulting someone. My brother, being six years older, had a completely different lifestyle and had left home by the time I was in middle school, so we never consulted each other.

4. Positive aspects of being a kyodai-ji

So far, I've introduced mainly the negative aspects of being a kyodai-ji, but there are also positive aspects.

First: Empathy for those in distress
　I believe I have become a person who can empathize with those who are struggling, not just people with disabilities but also those who are troubled or unwell.

　In small ways, this has led to actions like making donations during disasters or offering assistance to people with physical disabilities I encounter in public.

Second: Caring for my own child is not burdensome
　I have a son, and thanks to caring for my sister, I didn't find caring for my child burdensome, except for frequent breastfeeding.

　Changing diapers, assisting with meals, bathing, and putting him to sleep felt similar to what I used to do, and since his body is smaller, it seemed easier than caring for my sister.

Third: Leveraging personal experiences in work
　This might be somewhat unique, but there are cases where experiences as a kyodai-ji can be utilized in work.

　For instance, like the author, one can become a writer who shares personal experiences in articles, or work in welfare-related jobs where the care provided is informed by being a kyodai-ji.

　There are also people who give lectures as kyodai-ji.

　Additionally, kyodai-ji often have the trait of being attentive and noticing details due to constantly being aware of others' moods. Many excel in sales or customer service roles by leveraging this trait.

Fourth: Forming deep connections with peers in similar situations
　Meeting families of people with disabilities or other kyodai-ji allows for shared understanding and makes it easier to discuss personal matters. This leads to forming deep connections.

　Although I didn't form deep connections with people I met after becoming an adult, I developed deep connections with those I met in workplaces with many family members of people with disabilities or kyodai-ji.

Being a kyodai-ji is not all negative.

Even if it's hard to see it that way, consciously looking for positive aspects can slightly change your mindset.

5. Support available for kyodai-ji

Here, we introduce some support available for kyodai-ji, which may not be widely known.

This is just a small part, so please explore further on your own.

5-1. Support for families with kyodai-ji and children with disabilities

Certified NPO Smile of Kids (Yokohama City) operates "Lila's House," a patient and family accommodation facility, in collaboration with the Kanagawa Prefectural Children's Medical Center.

Since February 2009, they have been providing a childcare service for kyodai-ji near the medical center, allowing parents to attend to their hospitalized children.

The childcare is by reservation and accepts infants from around 3 months old to upper elementary school students. The fee is 300 yen per hour per child.

In the fiscal year 2020, a total of 555 children used the service, and it is said to be a place where children can smile without having to hold back.

The childcare hours are from 9 a.m. to 3 p.m., but they offer flexible support in emergencies.

Reference: Kyodai-ji Childcare | Smile of Kids

5-2. Exchange meetings and workshops for kyodai-ji

Established in 2023, the "Japan Kyodai Welfare Association" aims to create a society where kyodai, parents of people with disabilities, and related parties can live with peace of mind.

Their website features episodes of kyodai-ji and introductions to specialized literature.

They also introduce "Kyodai Support Activities," showcasing support activities held across various regions.

These activities are valuable opportunities where many kyodai-ji participate, allowing them to realize they are not alone in their struggles.

As a result, there are many introductions to activities that encourage participants to express their thoughts in words. Focusing on the point that "kyodai-ji tend to hold back at home," these activities allow for stress relief by voicing one's feelings, making them very meaningful. Why not take a look?

Reference: About Kyodai Support | Japan Kyodai Welfare Association

NPO Shibutane, as a supporter of siblings of children with illnesses or disabilities, offers a system called Sibling Supporters.

Since its start in November 2016, they have conducted training workshops across various regions, with 54 sessions held in 31 prefectures as of December 2022.

The Sibling Supporters program features lectures and group work to understand the feelings of siblings, as well as information sharing about the hosting region.

The basic training is also available online via Zoom, so if you're interested, please consider participating.

Reference: Training for Supporters: Sibling Supporter Workshop | NPO Shibutane

5-3. Counseling support for kyodai-ji

The "Uraraka Counseling Room," where over 500 experts such as clinical psychologists are available for consultation, also offers "counseling for kyodai-ji concerns."

Kyodai-ji can consult with social workers or clinical psychologists about concerns like the following:

• Feeling difficulties in life due to being a kyodai-ji
• Having future anxieties because of being a kyodai-ji
• Wanting to know specific support for kyodai-ji

Counseling can be chosen from four methods: face-to-face, online call, phone, or message exchange, allowing for a burden-free experience.

Additionally, anonymous consultations are possible, so you can feel secure if you don't want your family to know.

You can easily consult without hesitation, so please visit the website and find a specialist that suits you.

Reference: Counseling for Kyodai-ji Concerns | Uraraka Counseling Room

6. Awareness activities for kyodai-ji and what we can do

So far, we've introduced various aspects of kyodai-ji, but support from those around them is essential for kyodai-ji to live freely and authentically.

Parents of children with disabilities inevitably prioritize the child who requires more attention. This is an unavoidable reality.

However, seeing their parents struggle and sometimes cry, kyodai-ji tend to think they must not cause trouble or be a burden.

What can people who are not family do in such situations?

There's no need to do anything grand; just listening to them or making a small donation to support organizations is enough.

Simply having someone to listen can allow them to express what they usually hold back, lightening their hearts. Donations can enhance and expand the activities of support organizations, helping kyodai-ji.

NPO "Shibutane" is an organization for siblings of children with illnesses.

Donations can be made via credit card or bank transfer, and also through purchasing LINE stamps or items from Shibutane's Amazon wishlist.

As attention and support for kyodai-ji grow, if you feel inclined to help, please start with what you can do today.

Reference: Support and Donations | NPO Shibutane

Additionally, Shibutane created a booklet titled "Book for Siblings" in 2011 with support from the Takeda Well-being Program to support siblings.

In 2018, with support from the General Foundation for the Promotion of Ceremonial Culture, "Book for Siblings ②" was published.

The PDF version is available for download on Shibutane's official website, and the booklet version can be obtained with free shipping, so please consider reading it.

Reference: NPO Download | Shibutane

Additionally, "Creates Kamogawa" has published many books related to kyodai-ji.

Please check them out and further understand the realities of kyodai-ji.

Reference: Reference: Search Results: Kyodai | Creates Kamogawa

7. Conclusion

This article introduced what kyodai-ji are, their unique challenges and positive aspects, and support resources.

Kyodai-ji often feel a strong tendency towards difficulty in life. However, it's important to understand that it's not that kyodai-ji think their lives are difficult by choice. No one truly wants to feel that way.

Nonetheless, being a kyodai-ji means having been in a unique environment during childhood and adolescence, with various caregiving responsibilities, hospital visits, and restricted activities, clearly different from typical households.

Feeling difficulty in life is actually natural.

Therefore, kyodai-ji should not blame themselves for feeling this way.

Those around them should gently accept and listen to the emotions of kyodai-ji.

I believe the environment surrounding kyodai-ji will gradually improve. In the past, there was little opportunity to learn about kyodai-ji, and articles or news about them were rare. However, they are now more commonly seen.

As attention to kyodai-ji increases, the social support system will likely become more robust.

With that hope, let's continue to live authentically as kyodai-ji.