Chinh Nguyen is the mother of a son with autism and serves on the Board of Directors for Regional Center of Orange County (RCOC). RCOC is one of 21 private, nonprofit organizations contracted by the State of California’s Department of Developmental Services to coordinate lifelong services and support for the more than 22,000 individuals with developmental disabilities and their families in Orange County. The regional center is the first stop for those seeking to obtain local services and support to help them live safely and with dignity in the community. To learn more about RCOC, visit the website at www.rcocdd.com.
A is for Awareness—When and how did you first become aware that something was different?
Patrick was born the day after the Fourth of July. He rarely smiled or cried for the first eight months, even when he had chicken pox. He did not look at people when they talked to him or called his name. I thought it was very normal and I was a lucky mom at first, but then after his first birthday, the entire family and I started to question why he did not respond to his name, eat, talk and play like other kids in our extended family.
One day, my husband and I got a phone call from my in-laws. They told us they met a woman at the gym who told them she has a grandson acting just like Patrick. That grandson is now seven years old and is still using diapers and depends on his parents for everything, so they warned us to be prepared for the possibility that Patrick could be similarly disabled.
I was shocked, but I know Patrick’s grandparents care for and love him so much. I could not sleep and spent hours on websites doing research. I was even more stressed when I learned there were not really treatments—just therapies—so autism would never go away.
I then decided to look for information about therapies and get a diagnosis for Patrick. But when I asked some close friends and Patrick’s doctor about this, they all said he was just delayed and I shouldn’t try to get a diagnosis since he was only two years old.
They told me a diagnosis would lead to him being placed in special education, which would be bad for his learning process. They also warned me that he would be bullied and that I shouldn’t let others know about his condition. Back in Vietnam, where I was born, people who have kids with disabilities keep their condition secret because they do not want neighbors to think negatively of them for giving birth to an “abnormal” child.
After that, every time I thought about Patrick and his symptoms, I cried. When I had cried enough, I stood in front of Jesus at my church and asked that He show me the right way to help Patrick. When I opened my eyes, I noticed a girl who is a bit older than Patrick who was running around, looking “normal” but super active. Her mother told me she had just turned three. I started to share with her that I have a son who was one year younger, who was acting very unusual and having difficulty eating and swallowing solid foods. She looked at me and said: “I think you need to come to my house to meet my girl’s therapist. My daughter has autism.”
I saw this encounter as a sign, and it’s how I got connected with the Regional Center of Orange County to get help for my son.
U is for Unique—How has this experience been Unique for you and your child?
I believe that God has given me a wonderful Patrick and a lovely Sydney (Patrick’s older sister), and that both are smart and unique. They are blessings, but He also tests me, and I must be patient and love my kids unconditionally. I believe God only tests people with the ability to overcome their obstacles, so I became calm and began to take action to ensure Patrick received the tests and therapies he needs. Between the neurologists, psychologists and speech and occupational therapists, it’s been a lot to deal with, but we have an amazing neurologist who has guided us and given me the information I need to help my son.
As parents, I think we need to learn everything we can about autism and about our children’s therapies so we can use proven techniques at home to reinforce the work of professionals on the job.
Three years after beginning therapy for Patrick, I’m more comfortable; I now feel that I understand what was happening and what might happen in the future with Patrick. I’m also prepared for what I need to do to help my kids grow healthy and happy.
Every day, I spend two to three hours driving Patrick and Sydney from one location to another for therapy and lessons. He has occupational, speech and ABA (Applied Behavior Analysis) therapy for 22 hours a week besides his full-time school in the morning. We are lucky to live in a culture that values support and guidance with so many tools that do not exist in many other parts of the world.
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I is for Inspire—As a parent, when you look at your child or children, what inspires you?
As their mother, I have to be ready to support them in different ways, like spending time truly listening and talking to them to understand their changing needs.
Throughout the years of guiding my son and learning ways to help both my kids with their different challenges, I’ve also been inspired to become an informal type of therapist when the professional therapists go home. I’ve learned, for example, how to better resolve tantrums, ( I’ve started taking community college classes on child development), how to deal with children with special needs so I’m more familiar with ABA practices, and about developmental stages.
S is for Support—Are there things you struggle with or have struggled with, and what types of support do you still need?
I still have limited time, health and knowledge to help my children. I also struggle with the fact that many in my cultural community place a stigma on parents with special-needs kids—instead of patience or empathy, we might be offered pity or branded as foolish or unstable.
My way of reducing stress is swimming. It’s also my way of staying healthy. With so many passing away from the pandemic, cancer and other diseases, it’s very sad to see mothers and fathers leave their children behind. I could not imagine my young kids’ lives without their parents. Others might step in to care for them, but kids with special needs are hard to handle. Just thinking about this is enough for me to try to live healthier!
M is for Manage—What keys to success can you leave with parents so that they can better manage their day to day efforts?
Never give up on your child. Believe in your child and believe that he or she has the talent and motivation to learn; support your child so he or she can continue growing each day.
Of course, don’t be afraid to ask questions as you build knowledge about what’s happening with your child. Also stay creative and open-minded, and experiment with ideas and simple problem solving.
This article was featured in Issue 121 – Autism Awareness Month