May 19th - “Ocean Heaven”
My AP tests are finally over… I’m so glad to invest all my time and energy back into Change Sports. Today I conducted an interview with one of the parents at Change sports. We were actually sharing a ride back through a carpool, so it was a memorable moment for me. I have translated the contents of the interview and put them below (translated into English):
Lucas: How did you initially realize that your child may have autism?
Parent: There was a family friend of ours whose child was friends with my son. Our family spent a lot of time together when he was about 1-1.5 years old. One time when we were on vacation, the other parent was like: “Hey, I feel like your son has some differences to mine. Like he doesn’t make eye contact with me when I call him and ignores me.” Some other examples included that when other kids want something, they may point towards it and exclaim that they want it, while my son didn’t point or speak. He rarely makes eye contact.
At that time there was a popular movie in China called “Ocean Heaven” in theaters and the other parents were like: “The movie character’s behavior is a bit similar to your son, maybe you should check with a doctor”
Lucas: Oh, I’ve actually seen the movie. It’s about an autistic kid’s struggles and the bond he shares with his father right?
Parent: Yeah, exactly. At the time we had never heard of the idea of “autism” so then we did some online searches and realized my son fit many of the qualities an autistic child has. Thus, we decided to go to the hospital to get him checked. When I found out about his autism I felt the world was ending. We tried to find some specialized organizations and education groups and was looking to learn more, all when he was about 1.5 years old.
Lucas: 1.5 years old, so you found out about his autism relatively early?
Parent: Yes, quite early. Normally within 1 year of age, all kids display relatively few behavioral differences unless they have SERIOUS conditions. In other cases, it’s very hard to realize if a child may have autism. Later on, my son only started talking when he was 2 years old but by that time, we had already gone through about a year of treatment. In fact, the earlier you start treating/training for autism, the more effective the endeavors will be. Of course, we still need to thank our family friends a ton for telling us about noticing these autistic tendencies, or else we might have missed the prime window and be late by a few years.
Lucas: Oh, that’s interesting. Another question I have is “What is the happiest thing about raising an autistic child?”
Parent: The main happiness I get is seeing him improve. When I originally found out he might have autism, he didn't know how to talk. After searching online, there was a possibility that he wouldn’t ever talk, so it was quite scary at the time. And since we didn’t know if he would go on to have low, moderate, or heavy levels of autism, we were very uncertain. So I remember thinking at the time if at any moment he called me “dad”, I would be super happy.
All that time I was pouring my emotions and love into him but he didn’t have a response or give feedback, so hearing him say “dad” would have made me ecstatic. Later on, when he started talking it was like heaven. I don’t remember the specific time he started talking but later on I wasn’t satisfied with him simply saying “dad”. Each time he improves it makes me happy on the inside. Like last year he was able to independently catch a train for the first time. Before that, there was the first time he biked over 20 km and returned/managed the bike. Each time he independently completes something greater than before I get really happy.
As another example, it’s like when he learned to dribble a basketball. It’s easy for us or jump roping is simple for us but we had to find an organization to help him learn, to specifically train him to dribble a basketball or jump rope. After about half a year of practice, he finally got it. He could eventually dribble two basketballs - one in each hand and even do some basic maneuvers. Seeing improvement feels super worth it and makes me happy. When he was little he also gave me some emotional affection such as by saying “Dad, I love you”, and those moments make me feel warm and worth it.
Lucas: Wow, that’s great to hear! Did raising an autistic child change your outlook on life?
Parent: Well I think our lives have three main dimensions of outlook: life outlook, societal outlook, and value outlook. For my outlook on how life should be lived, I think it has changed due to my son, quite significantly actually. In the past I had some wishes and aspirations for my son; we all wanted our kids to be successful and better than us. We wanted our kids to attend better schools than us, better universities, right. But after having my son, I realized all these don’t matter anymore. It’s just about living a healthy, independent life, and I will be more than satisfied. I felt like the “benchmark” for what constitutes “happiness” went down by a lot. Later on I realized it was easier for me to feel happiness in my life. Without this factor, I might be thinking to myself: “I need to purchase a house near the best schools, maybe he needs to go to an elite middle school or high school, maybe he should take lots of extra classes.” I feel like that would have increased lots of stress and pressure, but none of that is here now. As long as he is happy and healthy, especially when he is with his mother and sister and being able to love as a family. That’s what gives me satisfaction. In the past, it was a bit ambiguous as to what I wanted but now it’s crystal clear.
To be honest, I think there has been a net positive on my life. For example, due to my son, my relationship with my wife has got a lot closer and intimate - we need to work together to forge a brighter future for our son. We can see past the small differences and conflicts. All these years I’ve never had an argument with my wife. When considering autism, all other small inconveniences in our lives are irrelevant. So I think there’s still a very large positive.
Lucas: Wow, that’s an unexpected “surprise” from life. That’s great!
Parent: Yeah, there’s a commonly told hypothetical story about “Welcome to the Netherlands”. Suppose I was originally planning to travel to Italy, and I’ve already done all my planning to see the Leaning Tower of Pisa, to try the pizza there, and all the logistics are done. But once my plane lands, I realized we’re in the Netherlands. How did the plane go to the Netherlands, I wanted to go to Italy, right? If at this moment I’m still tangling about going to Italy, that I’m adamant about going to Italy, then I would feel really bad. Your experience in the Netherlands would be awful, as you’re still thinking about Italy the whole time. At this moment we have to change our mindset and thinking. Maybe the Netherlands is also great, there’s scenery, there’s windmills. Netherlands would be great as well, maybe I just change my plans and adapt. Since we’re here in the Netherlands, let’s appreciate what it has to offer, right?
Lucas: That’s an awesome outlook on life. One final question: What advice would you give to other parents of autistic children?
Parent: First, you have to change your mindset and expectations. When you realize your child has autism, I don’t think the most important next step is to change your child or train them, I think the most important thing is to first accept reality and come to terms with it as parents. Like it’s just a reality. We have to accept it. We can’t just keep living in a delusion, maybe thinking the doctor misdiagnosed my son, or finding other excuses/justifications. So now we need to think of ways to help our child improve, rather than just escaping reality. As of now, whether it’s in Shanghai or America or any other place or city, we have research done regarding the subject and methods of treatment. Another is that parents need to stay positive and optimistic. This is the only way that family relations can stay well, or else it might not work out so well. I know lots of other families with autistic children who ended in a divorce, there’s a lot. Because a lot of people cannot accept an autistic child, so they want to divorce. Most of the time the father leaves, and the mother is left with the child. Of course, there are cases where the mom leaves instead, but regardless it leaves a huge pressure on raising the child and makes an originally difficult challenge even more unbearable. But if both parents come to terms and maintain a good relationship, if they respect and love the child, it’ll be better. Hey, all kids including autistic ones have cute factors about them. For example these kids are simple and innocent, which makes them likable. They bring joy to our lives and have a positive impact. Honestly, we’re only alive for a 70, 80 years, so what matters most is living a happy and healthy life and living each and every day as well as possible. That’s the advice I think that matters most to parents.
To be honest, initially, all parents will think the sky is about to fall and the world is ending, it’s over. Some parents might even secretly think about grabbing them and jumping off a building together or to jump in a river or lake. I’ve thought this at one point as well. It’s a scary thought, but we’ve all been there. We’ve all thought this at one point. But to be honest, maybe we just think about it at most and leave it there. We still need to think about how to deal with the circumstances and adapt. The earlier parents can accept their situation, the better it will be for everyone.
Lucas: Wow, I’m so glad that you’ve overcame that mindset and mental block. I think your son is at a much better place than before, he’s becoming more and more confident in himself. What do you think you did correct as a parent that made your son so much better today compared to in the past?
Parent: I think the thing I did best is that we didn’t really take any detours or neglect anything important. When we found out about his autism, we immediately started looking for organizations and doctors to seek training. His mom and I started learning and adjusting our mindsets, right? And what’s more important is the entire family - beyond just his parents, his grandparents have also adapted quickly and love our son regardless of his condition. We really care about him. And also in his education, starting from preschool, to elementary and middle school, we’ve been actively communicating with his teachers and we value it immensely. The communication with his teachers/mentors has been on point and prioritized by us, so I think this helped him grow a lot. We were quick to adapt and accept our circumstances and it’s something I’m fortunate we were able to do. There was a small moment of time when we believed in spiritual/religious sayings about good and evil regarding our son, but we realized it was nonsense quite quickly which was good. Later we tried different medicines or electric shock therapy but back then information was more limited so we did try a handful of ineffective methods. But ultimately the best cure is to simply give him love and care. It’s the best panacea. Him feeling our love is the prerequisite to do anything else.
Lucas: Yup, I think maybe it has to do with your community? You have a network/circle of other parents going through similar circumstances. At the same time of sharing info with other parents, you’re creating opportunities for your child to socialize.
Parent: Yes, that’s definitely true as well. Since initially, we got lots of support and information from other parents. They were the ones who told us what we should do and how we should proceed. Later on, we feel able and happy to help other parents who may feel lost as well. After helping other parents, we also feel happy internally as well. So ultimately, I am so lucky to have this network of parents who encouraged us to love our children regardless of who they are.
Lucas: That’s so great to hear! Well, that wraps up all the questions i have this time so thank you so much for your time and energy!