September 3rd - Insight into the life of a Parent
Today marked a special day; the first day of the new semester. I saw many familiar old faces as well as a plethora of new ones. We started a bit slow today - after a summer of laughter, fun, and vacation, I caught up on all the unique stories people added to their chapters. We were just getting warmed up and accustomed to the old traditions and ways of healthy exercise today.
One of the new faces I saw today brought a new learning experience for me. Sometimes, the kids would lose their attention span and focus, so I would help guide them to the correct place by placing my hands on their shoulders and moving them to the desired location. However, this child was a bit more shy (not all autistic kids are shy!!!) and when I tried to get closer to him, he backed up/ran away. I realized that I needed to change my mode of communication; instead of approaching him, I just let him gradually realize he needed to be around me/within my vicinity to be successful. He was able to successfully adapt.
The highlight of the session today was an interview that I got to do with one of the parents there. I learned a bit more about her child as well as the experiences, thoughts, and struggles they endured as a family. Here is the interview below as well as an audio file (I have translated the interview into English):
Lucas: When did you find out about your child’s autistic tendencies, and what kind of behaviors did they exhibit?
Parent: When my son was around 4-5 years old in preschool, my son’s teacher reached out to me saying that he had abnormal behavior. Under the advice of the preschool teacher, I went to seek professional help. As parents, we didn’t know much at the time but we trusted what the teacher said. Then, we went to see both the Department of Special Education at East China Normal University and also many Children’s hospitals and he was diagnosed with autism.
His main abnormalities were firstly, deficiencies in socializing. He had difficulty maintaining a conversation with others. Second, he didn’t really know how to follow instructions. For example, in preschool, he had trouble standing in a line or sitting in a circle. He didn’t participate in group activities and was unable to understand the rules of simple games - such as forming groups of 3 and competing against other groups. He didn’t really understand this concept. Formal diagnosis occurred when he was about 4-5 years old. We found out relatively early.
Lucas: Yeah, he was diagnosed at quite a young age.
Parent: Mhm, experienced teachers can tell quite quickly when a child is different.
Lucas: I see, did the teacher or doctors give any advice on how to alleviate the difficulties associated with autism?
Parent: The teacher’s main advice was to seek professional help and institutional treatment. Generally speaking, they said intensive treatment for autism will be more effective before the age of 6. As they get older, treatment will be less effective. The younger they are, the more effective treatment will be. So then, we decided to find organizations within Shanghai to help treat Autism but unfortunately there were very few groups that could help us at the time. Thus, we decided to move abroad after he finished preschool at the age of 6.
Lucas: Ohh, I see. But I see your son playing badminton here weekly, did you ever come back to Shanghai?
Parent: Yes, we came back. We left when he was 6 and came back when he was 10. So he received treatment while abroad for 4 years.
Lucas: Oh wow, I understand. Given his struggles, has your son ever been misunderstood while growing up by teachers or friends?
Parent: My son doesn’t really express his thoughts/communicate with others, so yes, it is difficult for others to understand him. Only his parents or friends can accurately understand the message he was trying to convey and he may use alternate forms to communicate. It might not be through verbal communication.
He might have some mood swings that cause others to misunderstand him.
Lucas: Do you have any hopes or aspirations for your son in the future?
Parent: My greatest wish for him is that he will be independent. I don’t have any expectations regarding grades, awards, accomplishments, career, or anything academic. I think I hope he can live an independent life without needing to rely on others, including his daily life, studies, and job. That’s my wish. I don’t care what he does; I don’t care how much money he makes. What matters is being independent. Parents will grow old. Eventually, his parents won’t be here to support him anymore, so what should he do? So that’s my thoughts.
Lucas: I see, that’s great. Earlier you mentioned that at age 6 your family moved abroad. In the future, do you hope he lives in another country or stays in China? Or have you not thought about it.
Parent: I have thought about it, but I still think the most important factor is independence. If he is able to become independent, I don’t mind where he lives.
Lucas: So you will let your son decide what he wants and where he lives, that is that you don’t mind where he stays?
Parent: Yes, that’s correct.
Lucas: What kind of advice will you give to other parents whose children just got diagnosed with autism?
Parent: I think firstly, as Chinese parents, you may need to adjust your expectations. Your child will not become a super dazzling or flashy person. They may not even be able to properly take care of themselves. Second, parents need to constantly be learning. Children are changing rapidly; even autistic children are constantly changing. My son is very different today compared to how he was yesterday. Third, keep a normal and relaxed mind. I know many special needs children whose parents take a “one step at a time” approach and are regularly adapting and changing their thoughts. Personally, I think expectations should be dropped to 0. Then, any small successes will make you very happy. Today, he accomplished this, then tomorrow, hey look! He accomplished something greater. It’s a great feeling. Kind of like a ladder.
Lucas: Oh wow, that’s a great approach to take. That about wraps up my interview for today. Thank you for answering my questions and for your time!
