In 1996, God gifted our family with a precious baby boy. Just like his two older sisters he was perfect in every way. But when he turned 15 months, we started to notice him “fading” and “pulling away” from us. At three-and-a-half, Justin was finally diagnosed with severe autism. Our world shattered.
Beauty and brains are supposed to make for a winning combination in the future of a woman. From a young age I was taught hard work would make the most of these two elements. So as a little girl I wanted to be pretty and smart, and was willing to work as I needed to. My parents moved the family from Hong Kong to the United States when I was 12 years old. With only an elementary school education, my parents spoke very little English and worked long hours. I was the first in my family to get a college degree, with a B.S. in Civil Engineering. Upon graduation, I became project engineer for the U.S. Department of Transportation. I continued to work part-time as a professional model. A few years later, I added a Masters in Cross Cultural Studies to my résumé. I married a handsome man who is an accomplished doctor out of an Ivy League. All in all, not too shabby for a daughter of poor immigrants.
But becoming a mother brought out some of my deepest insecurities. Unlike the discipline of engineering, there is no exact science to motherhood. The more deeply I grew to love my children, the more I felt uncertainty and even a sense of helplessness. I applied every mothering principle I could out of every book on godly wisdom. But still nervous that I wouldn’t ‘measure up’ as a mom, I labored even harder to be the ‘perfect mom.’
Our first child was the compliant one that allowed me to play rookie Mom with relative success. Our second was the spirited one that challenged every word and boundary. We spent a lot more time praying on our knees and asking the help of others with this spunky child. Along came our third. Everything was normal until our outgoing, explorative child suddenly became a serious introvert who was attracted to objects instead of people. He eventually lost his ability to speak and had trouble engaging the world. His diagnosis was a death sentence. No longer were we on our knees. We were on our faces before God.
A simple dinner out as a family would turn into a problem when Justin made loud noises to drown out the sounds in the restaurant. Embarrassment would turn to disaster when he went on to bang his head to the table, punching himself before pouring the glass of ice water on himself. He also refused to leave the restaurant in tones so strident that some onlookers would look with judgment on our “obvious” lack of parenting skills. So many family outings have gone sour: like when he snuck away and got lost on a ship. Another time he hid himself at an amusement park. We searched for him for hours. Over the years I’m afraid we developed a sense of hopelessness and dread as parents. We’d opt to hide out at home where things were more controlled and there was no need to worry about stares or comments. Still, even at home were plenty of moments when Justin would become frustrated or overstimulated. He would start hurting himself or run around the house kicking holes in the wall. We got so tired of repairing those we just left them unpatched for a while. No amount of beauty, brains or hard work could save us from this 24/7 tragedy.
Beauty from Ashes
I knew the answer to our pain would not come by human means. My husband and I had prayed and grieved so much. But little by little, hope surfaced. Not because our beloved son was miraculously healed; he has grown in some ways – always a great joy and a deep encouragement. Over the past 19 years, we found we have been changed. Maybe the miracle we were praying for did indeed occur. In our own hearts. We started to realize how deeply our own lives have been enriched, in some ways beyond our imagination.
I would like to share with you the 10 most important lessons I have learned on this journey.
1. God is not surprised and He is in control.
The day we got Justin’s diagnosis, all the dreams we ever had for him were lost in an instant. Like most parents, we imagined he would grow up to be a typical boy who enjoyed sports, had lots of friends, went to parties, and had fun growing up. We looked forward to his graduating from college, getting a job and maybe starting his own family. We felt robbed. Some point later during prayer, God showed me in the first chapter of Genesis that He created something beautiful out of chaos. He reminded me that He is an expert at making the best out of the worst raw materials and situations. He created beauty from ashes. He showed me that He was and is in full control. And that He loved Justin very much. This divine assurance was the first peace and comfort I experienced since the “death sentence”.
2. Shore up the foundation for the long term.
When crisis happens we almost always run to solve the problem and put out the fire. But special-needs families like ours need to remember that life is a marathon and not a sprint. Statistics tell us that up to 90% of marriages with a special-needs child end up in divorce. My husband and I learned to put in place supports for our marriage even as we tackled the needs of our son. We set aside weekly date nights, quarterly getaways, and special times of prayer to reconnect and be refreshed. Marriage counseling improved our communication. These measures enabled us to walk the many deep valleys together as one. I understand it might not be possible for all parents to do all these things. But I have seen some really creative ways couples have found to strengthen their marriages. Some couples institute a daily 15-minute hugging/holding time with no interruption. Others exchange love letters of appreciation. Others reach out to needy families in their area to exchange babysitting and help one other in various ways. You are of no use to your child in the long run if you – and your marriage – do not survive. Your relationship is not something you can place on hold while you put all your energy into helping your child. You must prioritize your marriage, for that covering is super-important to your children. Knowing that the two most important people in their world both love and are committed to each other is perhaps the best gift you can give your child.
The other foundation you must shore up is yourself. Mothers will sacrifice everything for their children. There are seasons where this is called for in order to allow our children to thrive. However, these seasons cannot last. In fact, they need to be as short as possible. In order to make it for the long haul, we need to feed and nurture our own souls. This may be difficult, as many of us are wired to give selflessly. But we cannot give out of emptiness. I learned this principle from Jesus Himself. The Bible tells us that Jesus poured Himself out for others. He healed the sick, the blind and the lame. He encouraged the downhearted and taught all who would listen. He challenged the corrupt authorities and brought the Kingdom of God wherever He went. But He poured Himself out from His fullness in God. Even Jesus, the very incarnation of God Almighty, at times went off by Himself to commune with His Heavenly Father. He also needed to eat and sleep, at least sometimes. We need to find ways to refresh ourselves. I love to take occasional prayer retreats in solitude to nourish my soul. In those times alone with Him, I am reminded that I am first and foremost His beloved daughter. He reminds me that I am cherished and that He loves my family more than I do. With this strong assurance in my heart, I can return home as a nurturing mother to all my children and a faithful and loving wife for my husband as best I can.
3. It takes a community.
I used to pride myself in being independent and self-sufficient. Asking for help was very uncomfortable for me. In fact, I saw it as a sign of weakness. But after years of being humbled by my neediness and even suffering times of serious depression, I learned that I must lean on my community. Just as importantly, I learned that it is no shame to do so. I now seek out older parents with special-needs children for mentors and supporters. Together, we’ve trained college students who are energetic caregivers for our son and others. This network has been an incredible blessing, nothing less than extended family. I can no longer make this journey alone.
4. My worth is not based on my accomplishments.
When I was younger I believed that my accomplishments showed my value. This was part of the beauty, brains and hard work equation of my culture. I grew up with the constant fear that if I failed to achieve more and yet more, my self-worth would tumble. Whenever I felt unmotivated or perceived that I was underachieving, I would feel dreadful, guilty and unworthy. But in parenting Justin, I found that no matter what he was or wasn’t able to do my love for him remained steady. I realized that Justin’s limited abilities did not change my love for him. In fact, I loved him even more. I wanted to protect and care for him more as he depended so much on me. One day I was trying to get him to attend to what I was saying to him when he was absorbed in his own little world. I longed so much for my child to just take one glance at me and connect with me. God’s Spirit said to me, “Chrissie, I love you and long for you in the same way.” I could hardly digest the truth. “Really?! Father, you do?” I came to appreciate the unconditional love of our God in a new way. This has become an important part of my own healing: accepting that I am loved for who I am, not for my looks or brains or accomplishments. I am valuable whether I produce or not. I am not what I do. Wow! In our accomplishment-obsessed culture, this was a breakthrough for me.
5. Receive the gift of now.
As a planner who thinks strategically, I tend to put a goal in front of me and then figure out what I need to do to reach it. Everything needs to be purposeful and intentional, wasting neither time nor resources. Efficiency may be great for the corporate world, but taken to the extreme in everyday life it is a joy-robber. Living with Justin has meant living with uncertainty. So over time we have learned to be okay with the unexpected. In between meltdowns, we’ve learned to breathe deeply, to listen to the birds, or just feel the warmth of the sun. We’ve learned to appreciate the gentleness of a touch and the warmth of a smile. Everyone shouts in joy when a baby first says dada or mama. But soon, we take their ability to speak for granted. Autism affects our son in ways that we cannot understand. At one moment he might be able to say, “That’s great, Mom!” and the next moment have no words at all. We have learned to appreciate every small victory, like when he says, “Good morning, Dad” because we cannot know if those words will ever come forth from those lips again. We’ve learned to appreciate the miracle of the moment. The gift of now is priceless. Being too future-oriented has sometimes caused us to lose the joy of the moment. We don’t do that anymore because while the present is here only now, the future may never be.
6. What other people think of you is not really important.
One aim of successful modeling is to be able look effortlessly gorgeous at all times. Perhaps I mastered that to a certain degree. Even when I am lost, I can totally look like I know where I am going. My daughters still joke about that. The faking was important to me because I always wanted others to have a good impression of me and my family. Being Justin’s mom has forced me to abandon that silly desire and so has given me new freedom. It was hard enough to always look buttoned up when the girls were babies. When Justin came along, the unpredictable tantrums and meltdowns almost kept me from going out in public at all. I had to rethink my need to look composed and in control. I had to learn not to be bothered by the condemning looks of strangers. Gone were the effortless pretty days. Not worrying about what strangers think has been a blessing and freedom all its own.
7. Take the lemons and make lemonade.
The challenge of having a child with autism gave us the chance to get to know many other parents in the same situation. We came to know needs in this population that had not been addressed and we prayed we might be part of the answer. We discovered that 90% of the families with special-needs children do not attend church. One main reason is that there is almost never appropriate child care for autistic children. With support from our church, we started a special ministry for these families. I shared publicly our struggles with our child. Parents thanked me. It turned out that many of them were in my shoes but for the sense of shame had kept the truth about their children a family secret. We trained workers to understand the children’s unique challenges, set up classrooms specially designed for autistic kids, added picture scheduling so the kids could know what was coming next, and made sure that the Bible lessons, the songs and teachings were always appropriate. We worked hard to integrate these kids with other children to help them socialize. Our entire church community transformed into a more caring and understanding place. We broke down those walls of shame and fear. No longer do families with special-needs children in our area feel that churches don’t accept or love them.
8. Function as family, but let kids be kids.
Our tendency as parents is to protect children from harmful, bad or tough things. We never want to overwhelm children with adult-sized problems. But we do feel it is good to share with our girls in an age-appropriate way when challenges arise. They have learned lifelong lessons from these times. They have seen our family rally for one another and have grown to see themselves as indispensable members of our family. This is much healthier than hiding family needs and problems from the kids. A word of caution: do not load your children with more than a child’s share of duty. They are still just kids. Do not turn them into primary caregivers for their special-needs sibling – an impossible role for a child. If this boundary is not observed, typical siblings can become resentful and bear ill feelings towards the special-needs child. We have tried to remain sensitive in this area and our daughters have grown in a very loving relationship with their brother. Their care for him does not come from a place of obligation but of love.
9. Do not parent from fear.
Fear sells. Many of the commercials that target parents feed off our normal parental tendency to protect. I was a very conscientious mom who installed protective locks on the windows, plugged the outlets, checked car seat restraints, moved all dangerous chemicals to locked top shelves, etc. etc. etc. Yet it was my child who ended up falling out of our second-floor window when he was four. I was angry at myself. But through that terrible incident, I learned that all my fear and worry were not best for our children. My endless worrying and all my safeguards will never be enough. There will always be dangers in this world. It dawned on me. I really needed to trust in the only One who could truly protect my kids. This truth freed me from the burden of feeling I needed to do more and more and more. It helped me experience a new level of peace that has been a blessing not just to me, but also to my husband and our children.
10. God’s dream for my children is better than mine.
We had chosen a special name for our son before he was born. Justin means justice and righteousness. We prayed for him to be a leader in those areas. We thought he might become a lawyer or a social worker or a pastor. We had to give up those dreams but we had no idea that God would resurrect them in ways we never imagined. In training young people to work with autistic kids like Justin, many have shared how deeply blessed they have been; they experienced God’s unconditional love for them. Many look forward to coming to our home to work with Justin. Some have chosen to study the field of special education to become teachers. One day it occurred to me, “How many ten-year-olds do you know who’ve influenced this many people in such a profound way just by being himself?”
Despite the conscientious laws in the United States, not all children have automatic access to appropriate education. At times we have had to fight with the school system to get needed services for Justin and other autistic kids in the district. We felt that perhaps the teachers and school leaders resented us for advocating so strongly for our son. But it was a simple matter of justice for Justin and for autistic children everywhere so we never gave up. Out of the blue one day a teacher wrote us a card thanking us for fighting as we did. She said that the process of her adjusting for Justin had also benefited her other students and pushed her to be a better teacher as well. I was so deeply touched I cried.
Motherhood has been a humbling process for me. It has changed my definition of success. Life is no longer about outward beauty, big brains, hard work and a show of accomplishments. It is now more about inward beauty and hidden things that perhaps only my Father can see. I’ve learned that inner beauty comes from love and a spirit that has gone through ashes and brokenness. This is an eternal beauty that cosmetics cannot achieve. Brains are not just for stuffing knowledge into; they are for growing in wisdom. The wisdom of a parent will be one of the most important legacies we can leave our children. Effortless beauty and eternal wisdom flow out of a place of contentment, not striving. I have found that contentment in my heavenly Father.
“He has sent me to bind up the brokenhearted…provide for those who grieve…to bestow on them a crown of beauty instead of ashes, the oil of joy instead of mourning, and a garment of praise instead of a spirit of despair. They will be called oaks of righteousness, a planting of the Lord for the display of his splendor.” Isaiah 61:1-3
I was amazed to find this piece written a year ago sounding so at home in this series. Christina shared her story originally as a contribution to a book in keeping with her passion to serve as a voice for the voiceless, the overlooked and vulnerable. Her husband is an esteemed professor and physician of gastroenterology in Southern California who made his recent second appearance on the TV show The Doctors. Christina is, among other things, a brave heart. She enrolled her two bright daughters in the Mafia Academy of Arts for instruction in writing and piano which the girls endured six long years.