Written by Wei Li, FCSN Parent
Graphics by: Angel Li, FCSN Voices Graphic Artist

*Reprint of 2023 FCSN Gala entry

I have learned so much in my journey of raising a kid with Autism Spectrum Disorder (ASD). Three learnings came out on top.

It takes love and patience. Mastering a concept may take Derek years. Training him or correcting a behavioral issue would take months of data tracking, breaking down the steps, and many repetitions. We tried almost every new treatment or intervention method that came up in the field in the first few years since his diagnosis, from special diets, supplement shots, to floor time. So many times Derek and I were both in tears during the sessions, my husband would take it over when I ran out of patience or broke down. So many times I wanted to give up in the middle of the sessions. Without love and patience, we wouldn’t have been able to get through our everyday life for the last 20 years.

It requires a growth mindset. Early days, Derek had the Applied Behavior Analysis (ABA) intervention from school and private therapy. In order to understand if the program designed for him would be optimal for him at a certain stage, I started reading and learning the autism psychology textbooks and ABA training material. Seeing him not making progress with perspective taking after learning it for half a year, I studied it on the internet and attended autism conferences, and designed the slides and stories to help him understand. When he showed interest in skiing, we broke down the motions in steps, took turns to show him step by step, and skied side by side with him, for three winters till he mastered it. Going into his adolescent years, he had some new behavioral issues every few months. Sometimes even without his behavioral consultant’s help, we had to put frustration aside, remind ourselves to have an open mind, try to understand why, and develop strategies for him to cope with. We are constantly learning and growing with him.

It takes teamwork. Raising a kid takes a village. This is especially true when a child has special needs with autism. I’ve been able to spend quality time with Derek and be very involved in every step of his growth while keeping my very demanding job in high tech and making advancement with my career. It is possible all because of the support from my husband, my entire family, my neighbors, schools, therapists, my managers at work, and my teams throughout my career. It is not cliché to say it takes teamwork. My husband and I work as a team and take turns teaching him. One would take it over when the other lost patience. We work with all of his school teachers, ABA, and speech therapists together to make sure all the programs designed for him are consistent and congruent. We communicate his progress and behavioral issues to all the teams involved. Every time I changed jobs, I would first share my son’s situation with my manager and my team. There are times I would have to leave in the middle of the work and tell my team that I need to attend to Derek as his teacher called me for issues. My colleagues have been supportive of my situation. I have developed deep empathy for my team members because of my own experience. One of my team’s cultures is that we cover each other’s back, especially when any team member has a family situation or health condition. We are a better and stronger team because of it. I’m beyond grateful.

FCSN plays a big part in my journey of raising my ASD son. Many FCSN families may think it is the enrichment programs in FCSN that our SN kids have benefited most. In my opinion, it is the FCSN families and parents who we have met and interacted with that have benefited us parents most. I’ve met more than a few long term FCSN parent volunteers: Anna, CK, Jing, Kai, Kelly, Lin, Sherry, Yvette, Yvonne, and many more. They love their SN children as much as any of us do. Admirably, they went beyond focusing on their own challenges and went out to share their experience and help other families generously. They coordinate and teach programs, create job opportunities, bring in experts and resources to FCSN and actively participate in legislation. They are making FCSN a better community for our SN children. I’m honored to know them and am truly inspired by them. I hope you are, too!

众人拾柴火焰高: the flames rise high when everyone brings wood to it. Together, you and I can make the FCSN community a better place for our children.