[Mental Health]Taking care of an autistic child is a journey of hardship and multiple challenges for mothers of SEN children.

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Text◆Chen Zhenji “Ming Pao”

The children run around, play in circles, disobey instructions, lie on the ground when they lose their temper, and refuse to get up; passers-by look at them with disdain, and even sarcastically say “no tutor”; parents are helpless…

This kind of embarrassing scene is not unfamiliar to parents of autistic children.

(Hong Kong News) Parents who have children with special education needs (SEN) have to go through many obstacles in the upbringing process and constantly deal with the challenges that arise as their children grow up. If there is no one around to talk to, the pressure will be boiling down every minute!

Case:

After turning around for a few seconds, my son disappeared.

“Jiejie (pseudonym) often jumped around when he was a child and didn’t listen to instructions. He liked to play in circles by himself, and sometimes he would run around. He would not say anything when he wanted to get something, but would just pull people over. “When I take him out to play in the park, he won’t interact with other children and will wander around alone.” Sister Xin has a 14-year-old autistic son Jie Jie. Her husband is from Hong Kong. She and Jie Jie came to Hong Kong 5 years ago. , so she was almost alone in raising the child, and only she knew the bitterness of it.

Feeling frustrated when people around you don’t understand

Jiejie was 2 years old and still couldn’t speak, but because he looked smart and smart, Sister Xin and her family didn’t think too much about it. However, after entering the kindergarten, the teacher reported that the child ignored others and would only play by himself. He was also very stubborn and said that there seemed to be something wrong with the child. Sister Xin’s brother then suggested that the child be taken to see a doctor.

Jiejie was diagnosed with autism spectrum disorder (ASD) when she was 3 years old. Sister Xin suddenly felt like a bolt from the blue, “I have always blamed myself, blaming myself for giving birth to him at an older age, and wondered whether I ate the wrong food, or I felt bad and too nervous when I was pregnant.”

Quit your job to take care of your children 24 hours a day

Although Sister Xin later accepted Jiejie’s situation, her husband was unwilling to accept it at the time, and the elders in the family also believed that there was nothing wrong with the child. The incomprehension of people around her made her feel frustrated.

After Jiejie was diagnosed, Sister Xin quit her job to take care of him full time 24 hours a day. She was afraid that an accident might happen if she wasn’t careful, which made Sister Xin very anxious. “I once took Jiejie to the park. In just a few seconds, I turned around and didn’t know where he went. I kept looking for him and almost called the police.”

Sister Xin was still frightened when she said that she had been searching for about an hour and walked several streets to find Jiejie. She was exhausted both physically and mentally. Sister Xin said that she had no room to relax and had to keep an eye on him every time she went out, which was very stressful. Sometimes the child throws a tantrum outside the street, or sits on the ground and refuses to get up. Passers-by always give her strange looks, which makes Sister Xin feel very disappointed and blame herself. She admitted that she couldn’t be happy at all during those days and felt like she was suffering from depression.

Can’t keep up when enrolling in mainstream schools

As for studying, Sister Xin wanted to find a special education institution for Jiejie, but her family did not support it, so she took Jiejie to study in Guangzhou alone under the pressure. She cried almost every day in the first year. Jiejie attended a special education school in Guangzhou, which provided one-on-one teaching and specialized social worker follow-up. Parents could often get together to chat, and the school also organized activities. Although the child learned slowly, he could still see significant progress.

However, when the mother and son moved to Hong Kong, the education system and support changed. Not only did the children need a long time to adapt, but the parents were also a little overwhelmed.

Jiejie moved to Hong Kong to study in her fourth year. She was enrolled in a mainstream school, but the supporting facilities were difficult to find in a special school. When she first entered school, Jiejie could no longer keep up with her academic progress. Her social performance was poor, she had no friends, and she often argued with classmates. My sister receives phone calls from teachers every month. “Jiejie always said that he didn’t like school, his classmates and teachers. He said that teachers would only think he was at fault.”

Jiejie’s mood deteriorated and his self-confidence declined. The whole family was troubled and anxious every day.

Later, Sister Xin searched online and found the Parent Resource Center under the Heep Hong Society. She let Jiejie participate in activities and training, and gradually made new friends. She also participated in parent talks and workshops to communicate and help other parents. As a result, Jiejie’s social, behavioral, and emotional aspects gradually improved, and Sister Xin felt that her stress was significantly reduced.

SEN children are hidden Carers are stressed

Autism is a disorder caused by abnormal brain function development, which mainly affects patients’ daily interpersonal relationships and social communication. Social interaction disorders, speech communication disorders, paranoid behavior patterns, etc. usually begin in infancy and early childhood.

Some patients require constant care. If there is a lack of elder support at home, one parent is forced to quit his job and become a full-time caregiver.

Students with autism spectrum disorder (ASD) are one type of students with special education needs (SEN).

Huang Wenjie, director of Hong Kong community organizations, said that many studies have pointed out that SEN parents have higher anxiety and depression tendencies than ordinary parents. According to the “Charging Situation of Support Services for SEN Children” published by the Association in 2022, 80% of the caregivers surveyed found that Due to insomnia, 70% require psychiatric consultation, indicating that most caregivers have emotional or mental problems.

High-risk caregivers do not seek help proactively

The general public does not understand SEN families. If they see children losing their temper in public places, they will think it is a parental discipline problem. This makes parents of SEN children lack support and are more likely to have emotional outbursts. Heep Hong Society regional manager Chen Laifang described SEN children as a group of hidden people. “Special needs are not visible to everyone. If you see someone in a wheelchair, you can easily accept them, but if it is just a person with weird behavior, People will be less tolerant, they will receive less support,” and even their caregivers will be under greater pressure.

Heep Hong Society Senior Center Manager Ng Fung-chi added that some caregivers have been emotionally troubled. For example, Sister Xin mentioned in the above case often blames herself, suspects that she ate the wrong things during pregnancy, worries that her elders will not understand, etc., and cannot vent her negative emotions. Severe cases can lead to mental problems.

“The current government or Hong Kong’s support system often requires caregivers to take the initiative and seek help; however, some people who are under pressure or have weak problem-solving abilities and have mental distress may just hide at home and not take the initiative to seek help. These are what we call high-risk caregivers.”

Ng Fung-chi also pointed out that there are 19 parent or relative resource centers subsidized by the Social Welfare Department in Hong Kong to provide assistance to caregivers in need. The centers provide some child-related development activities and parent support activities, such as parent discipline skills training, Stress-reducing activities, etc. will also provide SEN-related information; more importantly, create a platform for parents to connect with each other and establish social networks; at the same time, provide counseling and consultation for cases. If parents are deemed to be in need, registered social workers will be arranged to follow up or refer them Refer to professionals such as occupational therapists, speech therapists, etc.

Caregivers are advised to seek parental support

“The parent resource center is the first starting point. Caregivers take the children as the starting point and contact the parent resource center. When the parents get familiar with the child, they may disclose some personal circumstances, or when we feel it is necessary, we will provide individual counseling and follow-up. “

Chen Lifang pointed out that the motivation to seek help takes time to establish. In a familiar and comfortable environment, it is easier for parents to open up.

“Compared to caring for the elderly and chronically ill,

Taking care of children with SEN is a lifelong issue for parents.

Caregivers will face different challenges at different stages of their children’s lives.

Such as children’s emotional changes and adolescent rebellion period.

Therefore, in addition to paying attention to children’s training and learning needs,

It is recommended that caregivers seek out parenting support, such as effective discipline techniques,

How to deal with children’s emotional and behavioral problems, etc.

Learn to adapt to changes as your child grows. “

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