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Raising Multiple Children with ASD: Finding the Strength Within

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by Kim Yen Nguyen, PharmD
Autism Asperger’s Digest
| November/December 2012

My children—Nam, Lan, and Mai—remind me of three precious pieces from the proverbial treasure chest. Each shines with a unique presence. Like any set of siblings, they are different; one is Amazonian tall compared with the others, and her facial features are carried over from my side of the family. The other two resemble their father more, with their stocky frames and pronounced jawbones. One attends the University of California, Berkeley, and the other two will most likely stay with me into their adult years. Yet all three possess a common fabric that unites my family. They are all on the spectrum, with symptoms showing at different ages and with varying degrees of severity.

Nam
Nam, the oldest sibling, possesses a heart of gold. He is a gentle giant of 24, built so sturdy that one might believe he was a football linebacker in a past life, and yet he is so sweet and mild-mannered. Compared with my other children, he was slow meeting many developmental milestones. There were definitely signs and symptoms of autism spectrum disorder (ASD), if only I had known what to look for at the time. He was not interested in playing with other children, and often he was in his own world vocalizing unintelligible sounds or playing with toys inappropriately (e.g., only rolling the wheels of a toy car). He also did not want to cuddle much, rocked constantly, and fixated on certain objects or repetitive behaviors. Around four years old, his limited and, at times, echolalic communication was lost and replaced by more crying and head-banging episodes. I was robbed of his gentle touch and the sweetness in his voice when he used to call me mom.
His symptoms now manifest mainly in vocal outbursts and constant rocking. His vocalizations—like the repetitious “eeeee’s”—are unintelligible now, and I don’t know if he will ever speak again. I believe in my heart, though, that he still remembers that I am his mom.

Lan
Lan, my middle child, is our diamond in the rough. She and my son look the most alike, but the similarities end there. As a toddler, she was precocious and learned quickly. Then things took a detour. She became agitated at the slightest change in daily routines or objects in the house. Her interests were specific and obsessive (e.g., cat, dog, lemur). People’s faces, and certain noises that would fascinate other children, such as the sound of raindrops, served to trigger Lan’s uncontrollable crying fits and panic attacks. In addition to poor eye contact and the lack of understanding of other people’s feelings and personal boundaries, she also repeated words and phrases. Lan would ask guests in our home the same question over and over.
With constant prompting, a structured environment, and the help of compassionate educators and medical professionals, Lan has improved tremendously. Today, she is studying to become a neurologist. Her biggest challenge—then and now—is social interaction.

Mai
My youngest daughter, Mai, is a spitfire ruby—a vibrant girl, tall of stature, and a lover of music; she can be found often rocking on a chair, singing, and playing on the computer. Mai was born before Lan started exhibiting signs of ASD. By the time Mai approached her toddler years, we recognized the signs of ASD again with heartache: poor eye contact, lining up objects in a straight line, echolalia, walking on her toes, obsessing with normal routines, and lack of social interaction and appropriate behaviors. With the wisdom of experience, I was able to practice behavior modification techniques early on with Mai.
Mai currently attends special education classes and, despite the continued challenges, she is progressing well. She still constantly rocks, and for many years, learning how to use pronouns properly posed a challenge.

Managing Multiple Children on the Spectrum
I’ve been asked frequently over the years how I managed raising multiple children with ASD. In 2010, with encouragement from my father who was facing an uphill battle against acute lymphoblastic lymphoma, I began writing my book, Surviving War, Surviving Autism: A Mother’s Life Story (Robertson Publishing, 2011). In the book, I addressed that question and many others, such as “What was daily life like?” and “What treatments seemed to work best?”
Quite simply, having endured the horrors of the Vietnam War, the culture shock of coming to America, and being raised on the hard-working ethic of my father, I did not shy away from the challenges. It was my battle alone to lose, and I was not going to lose this one. The stakes were too high. The livelihood of my children depends on what I’m willing to do to give them the loving environment, tailored education, and progressive treatment they need.
Raising multiple children with ASD requires a team effort, an army if you will; however, at the end of the day, the parents of children on the spectrum have the ultimate responsibility but enjoy the ultimate rewards. A marriage, no matter how successful or blissful, strains under the stress of a medical crisis. To receive the diagnosis three-fold, the strain increases exponentially. My marriage, which already had its own separate issues, was no exception.
When Nam was first diagnosed, ASD was not at the forefront of the medical arena. A lot of unexplained questions accompanied our feelings of failure and frustration. When adversity hits, our “fight or flight” mechanism kicks in. Some people are equipped to take on the challenge head-on, and still others will avoid or run from it. It is imperative for the children’s sake that both parents contribute to the effort. Unfortunately, this united front was not present in my marriage and, eventually, divorce ensued. While my children’s father continues to honor his financial obligations, the task of raising the children on a daily basis rests with me.

Suggestions for Those Who Have a Loved One with ASD
My book contains the 10 most frequently asked questions that have been posed to me over the years. With multiple children on the spectrum, especially as each child has different needs and exhibits different degree of severity, I remembered making every effort and experimenting with practically everything, including medication, special diets, megavitamins, facilitators, behavior modification, and even nontraditional methods. Over the years I have suffered much, but I also have learned so much. I hope some of the following tips will make a positive difference in the life of your loved ones.

  1. I accepted each child’s diagnosis. Yes, I learned to accept that my children have ASD. Once I accepted that, I could move on and find ways to help my children. Most of all, I learned to accept what each child could and could not do and to not compare my children with others.
  2. I prepared myself physically and psychologically. In order to care for my children effectively, I must be happy and healthy to sustain the daily challenges. For a single mom raising three children with ASD, it was easier said than done.
  3. I learned that there is no one-size-fits-all method, and teaching them something or modifying their behaviors could require multiple trial-and-error efforts and could take months or even years. The key is to evaluate and tailor each child’s objectives to his specific needs.
  4. I discovered that for my children a combination of medication, structured environment, constant prompting, and behavior modification at home and at school worked reasonably well. You should know what your child can do and how well he responds to different methods. Keep a journal to document his medication, behavior, progress,
    and setbacks.
  5. I never gave up! And you can do it, too! Parents can be overcome by the emptiness that accompanies our feelings of “Why?” and “What could we have done?” I chose to focus on maintaining my sanity and forged ahead. Every day I found something positive to erase the negative. Instead of dwelling on what my children could not do and being disappointed, I focused on the smallest accomplishments. This allowed me to be glad and content.

I regret that my father died earlier this year, but I am grateful for his strength, courage, and dedication he instilled in me that I now pass on to my children. Just as my father was the best possible parent to me, I now strive to be the best possible parent to my children. He always told me to use my personal experience to help others. By sharing my story, I find a certain catharsis and a way to honor my father and my children. The fact that they are on the spectrum is secondary. They are first and foremost my children.

Kim Yen Nguyen, author of Surviving War, Surviving Autism: A Mother’s Life Story, is a proud single mom of three children on the spectrum. She is also a pharmacist and an instructor.

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print is prohibited without written permission of publisher.


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