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By Lisa McLaughlin
Sarah is my oldest child. Her birth and apparently normal early development were especially thrilling since my pregnancy with her had been preceded by several miscarriages. My happiness, however, was short-lived. By the time Sarah was about a year old, I had a sick feeling in what I came to think of as my “mother gut” that something was seriously wrong . After a series of specialists and misdiagnoses, Sarah’s symptoms progressed to the point that her diagnosis was obvious. She stopped making eye contact or holding my hand and by age three she had fewer than ten meaningful words or sounds. Sarah was autistic.
I spent the next seven years trying to “fix” Sarah. I chased after almost every treatment for autism I heard about. I wantedher to be totally cured and nothing else would do. I wanted my daughter back. I prayed hard and often for a miracle, but my prayers seemed almost futile. Although Sarah eventually progressed in speech and even learned to read, she made virtually no cognitive progress after about six years old and her behavior became significantly hyperactive and disruptive.
By the time Sarah was ten years old I realized I was at a crossroads. My attempts to find a cure for Sarah’s autism were costly in both time and money and they didn’t seem to be helping her. By then I had three other children and was expecting a fourth. In order to meet my entire family’s needs, my priorities needed to be more in balance. I made a conscious decision to move on. Apparently, I was not going to get my miracle.
To my surprise, acceptance of Sarah’s handicap gradually opened my eyes to a different kind of miracle the Lord was giving me. In numerous ways, Sarah’s autism was the answer to my prayers.
A wonderful essay by Emily Kingsley compares the experience of having a handicapped child to a dream vacation which apparently goes terribly awry. Imagine that expecting a baby is like planning a wonderful trip to Italy. You study the language, plan your itinerary and talk with others who have been there. But the unthinkable happens. The plane you thought you were taking to Italy, has landed in Holland. You are upset. You are angry. But there is no help for it; your vacation will have to be spent in Holland. You decide to accept your situation and that’s when you begin to realize that Holland, although not as flashy as Italy, is also a wonderful place. Holland has tulips, Holland has windmills, Holland even has Rembrandts. Your vacation, while not what you had originally planned, is gloriousnonetheless. (Emily Perl Kingsley, “Welcome to Holland.” 1987)
During my eighteen year journey with Sarah I have seen more than my share of tulips and windmills and even Rembrandts. , Being Sarah’s Momchanges my focus and helps me see what matters more clearly. Success in life, she is teaching me, isultimately based on my willingness to do what I have come to think of as “spiritual work.”Unlike the work I was used to, measured by “to do” lists neatly checked off, spiritual work is much more difficult to quantify. Quality time with my children, really listening to others, patience with the daily dramas, living and loving in the moment, are more important than the appearance-centered activities I used to prioritize.
Sarah has taught me to do “spiritual work” in ways too numerous to mention. For example, Sarah almost never looks as tidy as I would like. God has given her a wild, woolly head of hair; autism has given her a dread fear of scissors and an inability to be patient with grooming rituals. Consequently, Sarah often looks as though her hair hasn’t been combed in a month and she won’t let anyone cut it. Letting go of the myth that my children should always look perfect has helped me to see beyond appearances to the beauty of all children. When Moroni said, “…all children are alike unto me,” he wasn’t just talking about pretty, well-behaved, talented children. (Moroni 8:17). Loving the difficult child is where the rubber meets the road.
Sarah teaches me to look beyond appearances to the heart of things in many other ways as well. Sarah is virtually incapable of either whispering or being quiet in social settings. Her husky, slurred speech has droned through more church meetings than I can count.Family prayer, family home evening, family mealsand outingsjust weren’t what I envisioned before Sarah came along.. Her constant talking and hyperactivty turned these everyday activities into depressing fiascos.
I had to learn to re-define success or throw in the towel, because Sarah’s handicap ensured I would never have the picture perfect life I thought I wanted. Eventually, I began to ask myself different kinds of questions. Was I patient with Sarah when she unwittingly sabotaged yet another family activity? Was I understanding of strangers who stared at ourpublic struggles? Was I calm with my other children during these stressful occasions? I won’t say I never feel a stab of envy when I see an apparently perfect family, but because of Sarah, I am more likely to realize that my attitude is more important than my altitude. Perhaps 1 Samuel 16:7 says it best: “…the Lord seeth not as man seeth; for man looketh on the outward appearace, but the Lord looketh on the heart.”
My husband and I eventually had eight more children after Sarah was born. People ask me why we would go on to have such a large family when we already had a handicapped child. I often answer that Sarah’s handicap may be the very reason we did so. After Sarah, a non-handicapped child seems so, well, normal. I relish their early words much more than I couldhave had I not anguished for years over Sarah’s impaired speech. I thrill over first steps, slobbery kisses and other developmental milestones with keen joy I doubt Iwouldhave experienced had I not grieved Sarah’s stunted development. I even tend to view my other childrens’ tantrums, back-sassing, and numerous other bad behaviors with more patience than I might have had it not been for Sarah. Sarah teaches me that my children don’t need to be perfect,;normal is OK, normal is good.
Sarah never progressed mentally past the first grade, but as she grew the Lord gave her the ability –unusual for a child with autism -to give and receive love, a gift Sarah uses lavishly every day. Not only did her ability to hold my hand and make eye contact return, but Sarah became incredibly loving and affectionate. She tells me , “I love you, Mommy,” every few minutes throughout the day. She has told countless surprised strangers that she loves them, and neighbors and family acquaintances are often the recipients of her sincere hugs. Again Sarah teaches me to do spiritual work as she reminds me of our common brotherhood with her unconditional love for all people. Sarah has learned the most important purpose of this life and I believe she sacrifices normal life on a daily basis to help me learn it too.
Sometimes I catch Sarah staring at me in a wise way. In those moments the mask of autism seems to fall awayand I think I can hear her say, “Do you understand now, Mommy? Do you see yet what’s really important? I am here to help you learn about what really matters, what really brings happiness.”
It’s Sarah’s bedtime. Her soft, husky voice calls from her room, “I love you Mommy.” I love you too, Sarah. And thank you, thank you for teaching me.