An Unexpected Joy: The Gift of Parenting a Challenging Childby Mary Sharp
Lost and Found. Nic is a handsome boy who only wants to wear his Batman pj’s and cowboy boots––preferably at the same time. He’s trying to learn, to catch up, but with Nic everything comes more slowly. You see, Nic has autism. Mary is Nic’s mom. A family practice doctor from Michigan, she's spent the past twelve years vacillating… See more details below
Lost and Found. Nic is a handsome boy who only wants to wear his Batman pj’s and cowboy boots––preferably at the same time. He’s trying to learn, to catch up, but with Nic everything comes more slowly. You see, Nic has autism. Mary is Nic’s mom. A family practice doctor from Michigan, she's spent the past twelve years vacillating between denial, depression, rage, and despair. And now, acceptance. Mary has come to see her son as a true gift from God. But it hasn’t been easy. With a tender strength, her memoir offers: · A sense that someone else knows what you’re going through · Help in dealing with the inevitable emotional and spiritual struggles · Insights into pitfalls to avoid and issues to address Whether or not you have children with autism or other special needs, An Unexpected Joy will speak to your heart. It is a story of realistic hope and emergence––the pain of feeling lost and the joy of being found.
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An Unexpected JoyThe gift of parenting a challenging child
By Mary Sharp
Pi�on PressCopyright © 2003 Mary Sharp
All right reserved.
Chapter OneOur Family
The isolation that families with a disabled child experience is hard to appreciate. Family and friends often don't understand, and their well-intended advice worsens the alienation. Dear friends tried to comfort me, but I experienced their words as patronizing platitudes that did not acknowledge the depth of the disturbance in my child and our household. It was just more confirmation that no one understood what we were dealing with and that we were out there on our own.
I think it would have helped me if I had found another mother who had been through this and didn't look shell-shocked. Or she could have looked shell-shocked if she could still speak. And laugh. I needed someone to tell me that even with all our unanswered and not-very-well answered questions, it would get better. Because it does get better-if you let it.
I hope I can be that recovering shell-shocked mother for you. Let me first take you back to that dream time before autism changed everything.
Third Time's a Charm
Life was good. Who could want for more? My new husband, Rafael, was handsome, kind, and smart. He was the kind of father many men aspire to be. He fell in love with me partly because of my toddler daughter, Honora. He loved to disappear into the toddler world after a tiring day in the adult world (he and I are both physicians). The depth of silliness Nora and Rafael were able to explore was a balm to his serious soul.
The birth of our first son, Rico, was much anticipated but surrounded by some tough events. At the end of the pregnancy I became ill with a bizarre form of arthritis, which basically put me in bed for about six months. It was associated with severe fatigue. My father first tried to commit suicide a week after Rico was born. He lay hovering in an ICU in Florida as I lay hovering on a couch in Michigan, trying to nurse our newborn son. Rico's emerging sense of humor was the only joy that permeated the fog. He smiled and giggled at about four weeks of age. He hasn't stopped laughing since.
After I healed from that illness and returned to work when Rico was seven months old, I started to see another baby in the picture. This surprised me. I subscribed to the zero population growth theories of my college peers of the early 1970s. Weren't two children enough? But I would look at the two little ones playing together. Nora mothered her little brother, making him laugh and smile. And I began to sense there was another baby out there intended for our house.
I began to crave this other baby. This was difficult to talk about because my husband didn't feel any need for another baby. He thought a girl and a boy, both healthy, were great. I also found it hard to talk about because I thought it was almost greedy. And it was hard to explain the highly irrational nature of this craving and vision. It was almost like this baby was a shadow playing with the other two.
I prayed a lot. Mostly it was, "God, please take this craving from me." The answer came back repeatedly: "There is nothing the matter with wanting to have another baby. This is not a sin." This repeated day after day, week after week, until it dawned on me that God wasn't going to budge on this answer. My faith has taught me that this is a pretty classic God practice. When ideas or themes keep reoccurring in one's internal conversations, there's a high likelihood that God may be trying to give you a message. No pleading, bargaining, or reasoning seemed to work. Finally, I just gave in. I cried when I told my husband about this struggle. Then I talked to his mother about it.
I always refer to my mother-in-law as a professional mother-in-law. She was really good at it. She thought I was swell and that my children walked on water. She never gave advice that wasn't asked for. She had seven children and had lived through the Japanese occupation of the Philippines in World War II. The Japanese had captured her husband; his brother carried him the last few days of the Bataan Death March while she was starving with five children in the caves outside of Baguio. My husband and his younger brother were born after the war. This lady had lived a lot, and her priorities were right on: family and bingo. Also, she had a rich prayer life, with daily recitation of the rosary right before she watched her soap operas. She was much loved. Grandchildren (including those in their twenties) regularly came to blows over who got to sleep with her when she came to visit.
Mamang (mother in Tagalog, my husband's Filipino dialect) did not feel that wanting another child was any issue at all. Rafael should comply with my wishes on the subject and consider himself lucky for having married someone who felt this way. He came home a few days later after having lunch with her, somewhat chastised, and said we could go ahead and try, but he didn't want me calling him up at the office and telling him to come home and get me pregnant. I didn't have another period after that; I was pregnant in two weeks.
I craved waffles that pregnancy. The kids got sick of bacon, which was the only protein I could stand to get near. Having been believers in the myth of control, we decided to have a chorionic villous sampling. Rafael took the day off from work, and we drove down to the specialist who was doing them in our area. The ultrasound technology was amazing to me. It had improved since Rico's time in utero. It was live, unlike those flat pictures they took of him. The definition was so good that it almost had a 3-D character to it. I fell in love with the sixteen-week life floating around inside me. It was the first time I cried for joy.
The pregnancy was unremarkable. I experienced the common pregnant woman practice of worry and bargaining with God. I prayed, "Please, I can handle anything you send me-cerebral palsy, missing limbs, dwarfism, bronchopulmonary dysplasia-anything but autism." The image of those silent, unfeeling specters I'd seen so infrequently in my life hung like a pall. I've talked to other mothers of autistic kids, and many of them tell me they knew something was up during their pregnancy. I felt good most of the time, but the summer was long and hot, and my fatigue was bad. I worked part time and was busy with two-year-old Rico and five-year-old Honora. We planned that I would take three months off before returning to work and we would engage an au pair. My friend with twins had been lucky enough to have an angel from Holland show up in her life for their first year, so we used the same agency. We did not get an angel.
The Au Pair from Hell
Karoline arrived from Holland two days before Nic would be delivered. She "loved children." From what planet? I later asked myself. Rico developed an immediate, intense dislike of her. He is an excellent judge of character, and I should have paid attention earlier. She was shocked when Rico gave her a hard time. She wore white overalls on their trip to the park and was dismayed when they ended up dirty. She was miserable and chose to console herself in food and American popular culture. She insinuated that I could not be a competent parent with my lack of knowledge about TV sitcom stars and the movie industry. Our grocery bill doubled; the turnaround time on the ice cream in the freezer was less than twenty-four hours.
She tried to carve out a niche by becoming the cook, but she could only cook spaghetti. My father nearly lost it the evening of the sweet corn. A high holy day for those of us in the Midwest is the day the sweet corn hits the roadside stands. We eat bushels of it. It is an exquisite pleasure, enhanced by sharing with loved ones. Four or five sticks of butter make it onto the table. The rest of the food is planned around the corn. It is a delicate decision: What protein won't take up too much tummy space? Tomatoes, for the color alone, are required. Fruit pie with ice cream may push the indiscrete over the edge. But to us seasoned eaters, none of it is too much. There is no place we would rather be than sitting around a table (preferably outside), wolfing down corn, chicken, tomatoes, and peach pie with those we love.
Enter Karoline. Bad vibes. You would have thought we asked her to sit down to eat a bale of straw. She became uncharacteristically quiet. She was like an ice cube. She stared at us with a shocked look. She grudgingly cleared plates after the worst of the frenzy. She spat out as she left the table, "In my country, this is pig food!" She wouldn't even try it. Too weird. We should have known she had a screw loose.
It went downhill from there. She left after being with us for one month. I developed a raging mastitis with horrible chills and eventually a fever of 104 degrees. I still remember when the lady from the agency came to get her and take her to a family in Kalamazoo. It was like a toxic energy element had been removed. We all breathed a sigh of relief. I thought things would start to settle down. It was easier to have a fever of 104 and three children-including an unbelievably colicky newborn-without her there than it had been with her boiling spaghetti and attempting to change Rico's diapers against his will.
Big Baby Boy Birth
Rico's birth had been precipitous, to say the least. It took only fifty minutes, start to finish. Dr. B. and I both thought it would be a good idea not to deliver Nic on the kitchen floor as my friend Mary Lou did with her last baby. We agreed that I'd come in a few days before my due date so he could induce my labor.
He ruptured my membranes at 10:00 A.M. A contraction started at 10:20 when no one was in the room with me. Nurses had gone off to check on other patients. Dr. B. was doing rounds. My folks, husband, and daughter had gone down to the cafeteria for coffee. They didn't want Honora to get bored. Rico, at two-and-a-half, was home with Karoline, giving her a hard time with changing his poopy diapers.
I was uncomfortable being alone, so after about ten minutes of this one contraction, I pushed the buzzer to get the nurse's attention. She strolled in, relaxed and calm, and asked if things had started up. She checked me and found me to be completely dilated and the baby starting to crown. She flipped into Keystone Kop mode and pushed what I thereafter thought of as "the panic button." This called in about five of her sister nurses, who all scrambled around, getting the bed set up, doing whatever prep they could do, and locating husband and doctor. Husband, in cafeteria, almost didn't answer his overhead page because he was off-duty, having his baby today. My mother suggested he answer it. He ran upstairs to my room while she waited for Honora to finish her cocoa. He arrived around the time the doctor did, who gently nudged my very competent nurse out of the way so he could catch the baby.
At 10:50 I pushed out Nic, an eight-pound, nine-ounce big baby boy. Each of my other two had been seven-and-a-half pounds. I remember feeling exhausted as they handed me this huge baby. I thought, Oh, boy-he'll feed and sleep easy. He looked like the Buddha. We named him John Dominic Mahlon Javier-after both grandfathers, plus a professional-sounding name in case he wanted to go into business.
Excerpted from An Unexpected Joy by Mary Sharp Copyright © 2003 by Mary Sharp
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