by Helen Chou, FCSN Voices Reporter
This article originally appeared on FCSN Dream Builders, June 2019
Working at TJ Maxx’s stockroom unpacking soft goods, Van Hai knows that he is one of the lucky few who have obtained employment. Indeed, when TJ Maxx offered FCSN this job opportunity, there were 28 applicants applying for only three open positions. Through rounds of interviews with his job coach, Van Hai was one of the three who got the job. For three years now, he has been going to work twice every week, each time for 3 hours. Although his job is part time, Van Hai relishes this independence. With his hard-earned wages, he is able to use his own money to pay for his favorite foods when he goes on outings.
At 31 years old, Van Hai comes across as a friendly and capable high functioning individual, one would never have guessed that he had such challenging childhood and teenage years. This interview with Van Hai’s mother, Jwu Shyan details the challenges they faced while growing up.
Aligning the Right Allies
Our family is a multi-generational one, consisting of three generations living under one roof. As an immigrant family, we were by no means well-off; both my husband and I had to work. My in-laws were the ones who took care of the children, and Van Hai, the second-born of our three children, was their favorite grandson. They spoiled him during those first couple of years and resisted any form of discipline that we tried to put upon him. Even after the doctor informed us of his diagnosis, and after the teacher instructed us to impose some basic rules so that he can learn to function in a school setting, they resisted relinquishing control to me.
I got a rude wakeup call when his speech teacher informed me, “Your child is able to talk, but he prefers not to do so. If he doesn’t learn how to use his words to communicate before his teenage years, he will very likely not talk for the rest of his life.” I knew that I had to find a way to help him speak, and the first step was to find the right people to help put me in control of the situation. The teachers were able to help me persuade my husband about the severity of the situation. Then I asked my sister-in-law to help me to persuade my in-laws; all I asked was for them to refrain from interfering with my attempts to teach Van Hai. It took a lot of convincing but reluctantly, they agreed and I finally was able to start teaching Van Hai myself.
Battle of Wills
At this point, Van Hai had a lot of bad behaviors. He had no manners and would not respond to verbal instructions. Any attempt to teach him would send him into a meltdown. With a stern warning from the speech pathologist, I persevered, determined to help Van Hai.
One of Van Hai’s biggest motivators was food. I remember my first attempt to get him to use his words, Van Hai wanted to drink juice and went for the fridge. I wanted him to use his words. I asked him, “What do you want?” As expected, he flew into a tantrum. I held him in my arms and sat in front of the clock. Every time he paused to take a breather, I asked him the same question. I knew that he could say it, it was just a matter of whether he was willing to use his words to get what he wanted. After 40 minutes of screaming, he finally said “juice,” and I promptly gave it to him. The next time he wanted to eat, I again asked him to use his words which sent him into a rage for 15 minutes until he said “orange”. The third time, he whimpered for 3 minutes and said “rice.. He was getting the idea that I would not cave until he properly used his words.
With absolute discipline from school and from home in support of each other, we were able to slowly teach him to use his words instead of throwing tantrums. From then on, we were able to teach him basic manners, and finally be able to attend classes. With a reclaimed sense of calm and order, we decided to add a new family member. We welcomed my youngest daughter Wendy, who is seven years younger than Van Hai.
The Challenging Teenage Years
Things abruptly changed when Van Hai reached puberty. I had heard that many special needs children experience drastic physical and emotional changes during this period of time, but I was woefully unprepared by the severity of his changes: in a very short period of time, Van Hai became aggressive and violent. Seemingly without provocation, he would explode and become aggressive and the target of his outrage was unfortunately his smaller and defenseless younger sister, Wendy.
I began desperately searching for doctors to address his situation. It turned out that Van Hai was intolerant of 36 environmental and food allergens, which sent his body into a state of extreme discomfort, causing him to snap and have violent outbursts. We immediately put him on an elimination diet, and he started receiving a regimen of oral medication as well as IgG and IgE shots to control his symptoms. We began to see results as his violent outbursts subsided. The treatment was very costly, and I was even more concerned with the frequency of the shots leaving long term negative side effects in his system. I continued to search for solutions until I came upon Brain Enhancement Program (BEP). After completing his 3-month therapy course, his systems were regulated and he needed no further treatments.
A Blessing in Disguise
During this period of time, Van Hai’s life was so disrupted that he regressed in many areas. At school, he was failing in all 6 classes, which led to him being labelled “6 F” by bullies at school. Although I spoke to the teachers and administrators several times about the bullying, requesting that they either reprimand the bullies or transfer Van Hai to another school, they dismissed the severity of the situation and refused to do anything about it. Van Hai began to dread going to school, and the stress of being bullied eventually pushed Van Hai to the limit and caused him to hit the bully. We didn’t know it at the time, but this was actually a blessing in disguise. Because of this incidence, our Regional Center Case Manager stepped in and helped us take our case directly to Sacramento for a ruling in our favor. After trying to change schools for so long, we were granted our request and in less than 2 weeks, Van Hai was transferred to Leland High, which turned out to be a much more supportive environment.
Life is full of challenges, especially for us parents of special needs kids. It certainly felt overwhelming and lonely when I was going through the numerous, challenging situations. Now looking back, I am glad that I reached out, and through my network I was able to find allies to help me deal with the challenges, and friends who led me to solutions.
When you open up about your child’s problems, you might come across somebody who has already been down that path and be able to offer you some suggestions. Most importantly, by opening up yourself, you will come to see that you are not alone. We Asians want to “save face” and hide the unsavory facets of our lives. But for the sake of our children, “saving face” is not worth a penny! Only when you share your story will you be able to discuss the problems you face, share your burden, and find solutions that might change your child’s life. You might also offer other families insight into a situation you’ve been through before. It is so important to have a supportive community like FCSN that can allow our families to grow up together.