Niki: Now I Know It

Chapter 1

In the Beginning

When a woman learns she is with child, a thousand different thoughts and emotions assail her. Will the baby be a boy or a girl? Who will he or she look like? Will he or she be healthy? Then we pray. Dear Lord, please make my baby healthy, keep me strong, and let the delivery be smooth and free of complications. Again we dream: Will this child be athletic, musical, intelligent, or sociable? Unless she has had some prior experience with disability, rarely does a woman think, What if my child has special needs?

Yet according to Campaign for Children’s Health Care, 18.5 percent of our children are born with or develop some form of special needs. This means that 18.5% of parents each year will be tasked with the challenge of raising those children born with special needs, be they emotional, physical, or intellectual. It is a unique, often confusing, and often frightening journey. It is a journey I began in 1989 with the birth of my second son.

Nikolas was the result of my third pregnancy. I lost my first child to a miscarriage. Darek, my second child, was born in August 1987. Niki began eleven months after Darek’s birth. I loved being a mother to Darek and looked forward to the coming of Niki, though it was not in my plan to have the children so close together. Everything I had read about parenting suggested that it was better for everyone, mainly in terms of time management, childrearing, and behavior management—all worldly concepts—if there was a bit more separation between children. Despite the timing, I looked forward to having another baby. I love children and enjoy watching them grow and mature.

While stationed at an air base in Germany, we decided to visit extended family in Poland. This was during the early stages of my pregnancy. I had a difficult time with morning sickness that lasted all day. I was sicklier than I had been during either of the other pregnancies. This was worrisome, but I put it off at the time, thinking it was due to the typical discomforts of pregnancy.

When we returned from Poland, I had the first scare in the pregnancy. My son, Darek, came running to me for a hug and rammed his head into my abdomen in the process. I began to cramp and spot. Having lost my first baby to miscarriage, I became very worried. My husband took me to the hospital. The doctor’s visit confirmed the pregnancy and reassured me that all would be well. Thankfully, all appeared to be well as life continued with my husband, son, and the coming baby.

Around the end of my eighth month, my son came down with an ear infection.

His temperature soared to 105 degrees despite efforts to cool him down, make him comfortable, and help him rest and heal. My husband and I ended up taking him to the emergency room, where we waited all night to be seen. By the time my son had been examined and released by the doctor, we had been up for over twenty-four hours. After that night, whenever I lifted my son, I experienced contractions. It was a pattern that remained until three days after the due date.

Going in and out of labor had me four centimeters dilated and 95 percent effaced the day before Niki’s birth. I went in for a checkup, and the doctor decided to help the birth process along by stretching my cervix. This help threw me into contractions for the rest of the day and into the night.

The next day found me tired and weepy. By 1:00 p.m., exhaustion had set in, so I conned Darek into taking a nap—an activity he resisted with all his might. At 3:15 p.m., the onset of labor awakened me. It went fast. My husband rushed me to the hospital. We arrived at 4:30 p.m., and I was in transition. I could not get out of the car without my husband’s help. By 5:50 p.m., I was ready to deliver Niki.

But something was wrong. Every time I pushed with the contraction, Niki’s heart rate would drop very low. A pattern developed—I would push, and the heart rate would drop. The heart rate would begin to rise, and another contraction would hit and bring it down again. The doctor ordered me to breathe through every other contraction to allow the heart rate to return to normal. This was to reduce the risk of oxygen deprivation that might compromise Niki’s well-being. At 6:15 p.m., Niki came into the world with his umbilical wrapped under his arm and around his neck. The date was April 11.

As with all children at that time, Niki was given the Apgar test. This is a test of a newborn’s physical condition. Apgar is an acronym for activity, pulse, grimace response, appearance, and respiration. The test is given one minute after birth and five minutes after birth and is used to determine whether extra or emergency medical care is required. Niki scored a 3 and then 7 out of a possible 10. He was considered floppy in regard to activity and unresponsive in terms of grimace response.

I can still see the scene in my mind as the nurses evaluated his Apgar score. My husband and I knew something was wrong, because they whisked Niki to a corner of the room and called the neonatal intensive care unit (NICU). We watched as they flicked his heel with their fingers, and our sense of alarm grew. Niki did not respond. Tears began to flow down my husband’s face. All we could do was watch them take my son from the room without getting to see him, hold him, or count his fingers and toes. As soon as I could, I began nagging the nurses to let me go to Niki. They kept me waiting for much longer than I liked.

Once I was allowed to move to the maternity ward, I sneaked off to the NICU to see Niki. I found him hooked up to an IV and crying loudly in protest. It seemed like a nightmare with a comic twist. Niki was a full-term, 8.5-pound baby. He was a giant compared to the other babies in the NICU. Yet there he was, every bit as helpless as the other babies in the unit.

My intention as a mother was to breastfeed Niki. I had enjoyed the cuddling with my oldest and wanted to give Niki the same start. However, the pediatrician felt it would be better if Niki was bottle-fed while he was in the NICU. So we followed orders.

Niki did not seem to like the orders and would not feed well. The nurses were concerned by how little he drank. I tried, but he kept rooting for my breast. When I finally got him to drink a little, he would fall asleep. We gave the task to my husband. He had much better success with it, and Niki began to do better.

Then Niki came down with jaundice due to ABO incompatibility. He was treated with bilirubin lights. The medical professionals repeatedly drew his blood to check his bilirubin levels. After two days, his levels dropped enough for him to join me in my room. I was also finally given the okay to breastfeed him. The next day, we were released from the hospital. That’s when the troubles really began.

Breastfeeding Niki turned into a disaster. He’d fall asleep every few minutes, making nursing a two-hour task that would not satisfy him for more than thirty minutes. If he had been my only child, I might have kept at it. I tend to be persistent. But I had my older son to consider, and he already felt somewhat shoved aside by this newcomer. Within a couple of weeks, I was exhausted. Niki cried from feeding to feeding, and Darek felt like he had lost his mom instead of gaining a brother.

I tried to find ways to calm Niki down. I ran through all the methods I had successfully used with Darek or discovered in research. I did not have access to the amount of information that today is at our fingertips on the Internet. I would walk with Niki—this was no help. I tried the swing—no help. I tried rocking—no help. Niki still cried from feeding to feeding, getting worse whenever there was more chaos or activity in the home.

Soon, the family who lived upstairs would tell me in a combination of German, Italian, and English that they constantly heard my son crying. To add to the chaos, Niki’s crying would set off his brother’s crying, and vice versa. Eventually, the only sounds I could hear in my head were the piercing sounds of my children crying. These sounds haunted my days and my dreams at night.

I began to feel like a total failure as a mom. The message I received from the community around me was that a good mom had calm children and knew how to keep them that way. A good mom was always ahead of her children’s needs, so the tears weren’t necessary. A good mom had all the answers. Apparently, I could handle one child, but handling two was beyond my capabilities. Panic and I began to walk hand in hand.

The sense of failure was strong in me at this time. I became desperate for help, yet that needed help was impossible to find. My mother never had the problem. The pediatrician was satisfied with Niki’s growth, and when I asked about the excessive crying, I was given jokes. Yet I was seriously worried and wanted to fix whatever was wrong so I could become a good mom. I loved my children. How could I be so inept?

Eventually, I started talking to other mothers while standing in the Commissary checkout lines. It was difficult for me to open up that way, but I was desperate. It was there that I received my first lifeline.

My lifeline was an old German remedy for colic: give the baby fennel tea. Fennel is an herb that is soothing to the digestive tract and the stomach. I tried this by mixing the fennel tea instead of water with the formula concentrate. Niki didn’t feed well enough to take the formula and the tea at separate feedings. The best way to ensure he got the tea was to mix it with formula. It seemed to help. Niki began to calm down, and a bit of peace was restored. Niki still had some crying spells during the more chaotic times in the household and during the early hours of the morning. I never could figure out why this was so.

At any rate, we finally made it into something of a routine. I would get up, and then the boys got up. Activity filled our days, generally me trying to keep up with their needs. They would cry, I would figure out what it meant, restoring peace for brief periods. However, things were far from smooth. Niki was growing and meeting his developmental milestones, yet I continued to be plagued by a sense of something not quite right. It was little things like his crying whenever I bathed him. I tried to be gentler, and it didn’t help. I tried a firmer touch, but that didn’t help and I was concerned about hurting his delicate skin. He was still funny about eating, and when it was time to introduce solid food, meat was something he would not go near, so I worried about his protein intake.

When I would carry him, he would arch his back and stiffen up his body. I worried about dropping him. I ended up purchasing a carrier that I could wear like a backpack on my body, but even that proved difficult as Niki would stiffen up when I would put him in the carrier and pull away from my body and cry. He would have crying jags where nothing helped but wrapping him in a blanket and putting him in the cradle in a darkened room with soft music playing (usually Disney lullabies or Mozart). Physically, Niki was thriving, but all these other things seemed wrong somehow. In addition, I began to feel challenged by Darek and some of his behaviors as he reacted to the impact of this new little one in the house along with entering into his terrible twos.

So I sought help from the base child psychologist. He started by working on my parenting skills. He first told me it was time to stop being Mom and to become a teacher. According to him, once children reached about eighteen months, it was time to begin training them. A child’s tears at this stage were less about need and more about getting his or her own way. Our sessions were lessons in parenting as embraced at that time. Through him, I learned new ways to view children’s behaviors. I practiced techniques for training desired conduct while maintaining a positive environment in the home. For consequences, he instructed me to seek the natural one and use it for instruction. This really spoke to my heart and appealed to me personally, as this approach focused on pointing the children in the way they should go rather than punishing them for not getting it right. Each infraction provided an opportunity for reteaching proper behavior to the boys.

Under the psychologist’s guidance, I put toys into plastic boxes. We practiced picking up one toy before choosing another one to play with. We practiced following a mother-directed daily routine. We worked on various physical and pre-academic skills. We read stories. We played and worked on the computer. We practiced going shopping. I didn’t take the children with me for serious shopping but would take them with me one at a time for a single-item purchase. In this way, I could train them to stay with me and to complete the purchase without a tantrum, even when they did not get a toy or candy displayed at the register.

I had had an incident in which a child’s tantrum left me with little option but to wait it out. It was a terrible situation. One of my boys lay down in front of the doors leading out of the store in a full-blown tantrum. I had packages in one hand and a child in the other. He would not follow my directions, and I could not get him up. I put the packages down and tried to get him up one-handed, and he still would not budge. I even tried walking away just far enough for him to think that I was leaving but where I could still see him. That didn’t work. None of the people stepping over him to leave the store would help me. In fact, they just glared at me for being so ineffective with this child, but I refused to bribe him to get him out the door. In my mind, it was better to be glared at than to give in to the tantrum. After that, though, I decided not to take the boys together until I had them trained.

Once the child psychologist was satisfied with my progress as a parent, he sent me to an adult psychologist to work on me. He felt I had family-of-origin issues that were creating the problems in the family. Conceptually, once I dealt with these issues, my family would function better. I didn’t agree with him but wanted to do whatever was necessary to improve our situation.

Concerned for the welfare of my marriage and my children, I went to counseling. I was still desperate to fix whatever I was doing wrong, and at that point, the professionals around me seemed to be saying it was my fault. I believed them and accepted the guilt their judgment produced. During the course of this counseling, it was decided that I had depression but that it was due to emotional abuse by my spouse rather than anything biochemical. I was being encouraged in group sessions to divorce my husband to protect myself and my children.

Small wonder so many marriages challenged by special needs children fall apart. In diagnosing the child’s problem, we begin by ripping apart the parents both individually and as a couple. My counselor at the time was prepared to go after my husband and if necessary his career to protect me and the children. Yet it made no sense to me because I didn’t believe there was any abuse present. Sure, we had some of the usual misunderstandings of young married couples, but in my mind, my husband loved the boys and me and did his best for us. It was at this point that the seeds of faith planted by my parents and the Catholic Church began to sprout in my life.

Chapter 2

Lean Not on Your Own Understanding …

After the birth of Niki, my days all merged one into another. I would get up and tend to one child after another. When the children woke up in the night, I would get up with them. I would no sooner get one to sleep when the other would wake up. I was worried that their crying would wake my husband, who needed his sleep for work. I was using all the willpower I had to keep getting up and putting one foot in front of the other. I felt exhausted all the time.

I cherished the vision of a nice, neat house with happy children and perfect meals on the table, all perfectly timed to my husband’s return from work. This would lead to a happy and satisfied husband. Then I would be loved by God and by my husband. In my mind, receiving the love of God and spouse depended on my level of perfection. Only perfect people received love.

Yet no matter how hard I tried, the house was messy. No sooner had I cleaned up one mess than another appeared. The children were frequently frustrated, in tears, or having tantrums. Dinner rarely made it to the table on time, because, in my mind, meeting the children’s needs outweighed meeting the timetable.

During those times when the boys had me up in the middle of the night, tears would begin streaming down my face. I felt so lost. I poured out all the love I had in me and all the energy I could summon, and it still wasn’t enough. I began to wonder, Is this all there is? Do you work hard in school, learn everything you can, and strive to achieve great things, only to end up like this?

I finally reached an end of self. I could not rely on my energy, knowledge, experience, or good intentions for my current state in life. The counseling about the boys had brought some improvement; personal counseling had made things more difficult. I had a mess