CHAPTER 1
Our Story
"You're pregnant" are words parents long to hear. Even with a great pregnancy, parents can be overwhelmed with caring for their children. This is more apparent when a child has behaviors that families do not understand. If the family faces issues with the pregnancy, birth trauma, or the dreaded fact that something is not right with the child, then "How can I care for this child?" races through their minds. We naturally parent children the way we were taught, either by our own parents or maybe through a few classes attended. Rarely are parents given the skills to handle children who do not fit the "normal" way of developing. My husband and I faced this in our own journey with our boys. We want to share the lessons we learned along the way in order to help others. We learned about sensory integration as a way to help our boys calm their bodies. This helped us not to label the things the boys did as behavioral problems but how their bodies worked for regulation. The most important lesson for us was the way our family grew in spiritual connection. We hope our stories help others along their journeys.
Sensory integration, or processing, is simply how we use information through our senses to connect with what we have already learned about the world around us. We take in information through our five senses: taste, vision, hearing, touch, and smell, along with two hidden senses. We use movement through our vestibular sense (in the inner ear) and our proprioceptive sense (in our muscles and joints) to help us move about and calm our bodies. The sensory system was not understood well when I was born in the 1960s. Today, most of the general population has not heard of these concepts, only those who have or know children who are struggling to learn to regulate their bodies.
When I was a young child, my mother told stories about driving me around town so that I would sleep. She would say that as soon as she pulled in the driveway I would wake up. She stated that I did not sleep for the first three years of my life. She said I would sit and eat lemons while watching the Johnny Cash show. Not understanding the sensory issues that I had as a child, my mother would state, "We just beat the hell out of you." When I married my husband, David, I could easily identify with some of his behaviors. He has a hard time with meeting new people and large crowds, and he prefers routines. So when I talk about sensory integration/processing to others, I often say that David and I should have never bred. Two adults with similar problems were running the risk of having children with these issues. As young adults, we were eager to have children of our own. We suffered through four miscarriages, and finally two beautiful boys came into our lives.
Mykel David
Our firsts on, Mykel, was conceived right after a miscarriage and before my husband left for the first Gulf War. I had already scheduled to see a specialist, Dr. Brown, to help us get pregnant. Due to complications, I could not get in right away to see Dr. Brown. When I finally was able to see the specialist, I was five months along. I believe this was God's way of helping me pass the three-month mark where I had lost children before. At this time, I did not fully understand how emotional stress was affecting my unborn child. My family was in turmoil over losing my three-year-old nephew after eighteen months of cancer treatments. My sister-in-law was losing her precious child just as I finally had one.
The day I drove my husband to the air force base with war looming, my anxiety was very high. He was leaving on a mission, and he was not allowed to know where he was going until the plane was in the air. With the escalation in the Gulf, I was stressed and worried as to where he was going to be stationed. I drove home worrying about my unborn son and my husband. I turned on the television to see the starting of the first Gulf War. I do not typically show a lot of emotions, but at that moment, I collapsed on the floor, crying. My thoughts raced. What will happen to David? What will happen if I have to raise my son alone? What about all those serving? We have friends who are already in Iraq. What will happen to them? I cried out in prayer for all those in the service.
We had not been at war in so long, and the treatment of the Vietnam veterans ran through the back of my mind. Of course, all this changed, and the country did show tremendous support. Now, looking back, I can only imagine the amount of stress hormones that were being dumped into my body as I carried Mykel. Luckily, my husband was able to return home before Mykel's birth.
Mykel was two weeks overdue. After some complications, it was decided that he would be delivered by Caesarean section. Dr. Brown had an incredible sense of humor. During the delivery, Dr. Brown exclaimed, "This is not a baby—this is a football player. This is not an umbilical cord—this is a rope." Mykel was eleven pounds and six ounces. He was twenty-three and three-quarter inches long and bow-legged! Our little baby boy we had tried so hard to get here was huge! A few hours after he delivered Mykel, Dr. Brown came into the room and stated that Mykel had a romantic date. "He will have to go to the nursery tonight, because I just delivered a redheaded ten-pound, eight-ounce baby girl."
I noticed right away that Mykel and I had difficulty bonding. He did not like to be held. He did not tolerate certain clothing and was susceptible to rashes. He would not sleep at night. He cried often and there was little that would comfort him. He had projectile vomiting, allergies to milk, asthma, and extreme allergies to everything outside. To say that Mykel was an active child would be an understatement. He never slowed down; he walked by the age of nine months. He talked early, was very bright, and charmed all those around him.
Being a counselor, I knew the importance of bonding and self-regulation. I had been trained in attachment theory. Attachment is crucial to children learning how to form relationships. Mykel had extreme crying outbursts, especially around sleep. I read many books and tried so many methods. I tried the Faber method of getting Mykel to sleep. (Allow the child to stay in the room, check on child, offer reassurance, but do not pick the child up or take him to your bed.) I worked months trying to get him to sleep in his room and through the night. At this time, I was working with the early intervention program, especially with children who had autism. I began working with several occupational therapists, who taught me sensory integration techniques. I began asking questions about my son as well. One therapist, named Keri, told me, "Quit torturing the child." She showed me how to make his crib feel smaller (by sectioning it off into smaller areas with rolled towels). This induced a more secure feeling for Mykel. We used heavy blankets for deep pressure into his muscles and joints. We played soothing music to limit other sounds. He began sleeping better, although even to this day he struggles with sleep.
Even when he was very young, we knew Mykel had regulatory issues. He was very obsessive-compulsive and hyperactive. He would either over-attend to tasks, such as working puzzles upside down on the non-printed side for hours, or not focus on important details, letters, numbers, and reading. He had signs of dyslexia, writing everything as a mirror image. Mostly he would have emotional outbursts that would last twenty to forty minutes. He would not tolerate help with calming down. Since I was a therapist, I tried very hard to follow the ADHD (Attention Deficit Hyperactivity Disorder) treatments that did not use medication.
After Mykel had attended pre-K and kindergarten and was beginning T1 (transition first grade) without learning his letters or numbers, we knew we were going to need help. His emotional outbursts had taken a toll on our family and his caregivers. We started ADHD medication—and within one month, he began to read. He also tolerated his younger brother without emotional outbursts. At the time, it felt like a miracle to us.
I know that so many parents struggle with the guilt of medicating their children or using more natural methods. We have used both, and my view on these has changed over the years. This can be a confusing and frustrating process. Although I encourage parents to get professional help and have their child evaluated, including a thorough medical exam, I advise them that they are the parents and they know their child better than anyone else. I tell them to trust their instincts and do what fits for their family.
My boys did use medication when they were younger, and we used more natural methods when they were teenagers. Now they are adults, and they try to manage without either. It is still a struggle. Parents can be weighed down by guilt over the choices they have made. They must realize that there are benefits to all choices. Most parents are doing the very best they can at that moment in time. Most parents' choices are made through loving intentions. It is their support and love that is the key. It is the parents' connection with the children that makes the difference.
Jesse Alexander
Almost three years after Mykel's birth, we went through our fourth miscarriage; this was in January 1994. My new obstetrician stated that we needed to wait three months before getting pregnant again. My husband told her that was not a problem, since he was being deployed for three months and that we were done trying to have children. In March 1994, I became pregnant during the few days that David was home. My doctor was surprised; she remarked, "You guys barely waited."
Right away we had difficulty hearing the baby's heartbeat. We had fourteen ultrasounds due to the issues of this pregnancy. (Because my husband was being deployed, he was only present for two of the ultrasounds) At three months, I hemorrhaged and was rushed to the hospital to have a D&C, since they could not see a fetus in the blood. (I was bleeding so much that I scared an OB nurse practitioner of more than twenty years.)
At the last minute, my doctor decided to do an ultrasound. I could not look at the ultrasound screen. I stared at the ceiling, knowing that David would not try again. I was resigned to the fact that I would only have my little boy, Mykel. At this moment, my husband jumped up and screamed, "He's in there, and he's kicking. He is mad as hell!" The bleeding stopped, and I was put on bed rest for one month. At the five-month mark, I began leaking amniotic fluid, but I only knew that it felt like I was having wetting accidents (enuresis). One of the ultrasounds showed that the amniotic fluid was gone, although the technician never said a word; looking back, I knew something was wrong. My doctor called me at nine in the evening (which is never a good sign). She told me that the amniotic fluid was gone. She said she was very sorry, but I needed to come in the next morning and make some decisions. She kept telling me apologetically that the baby would not be viable at five months if we had to deliver it. She asked that I bring someone with me.
David and my friend Kathy Robinson accompanied me to the visit. My doctor explained that at five months, babies begin to make the amniotic fluid, rather than the mother. Something could be wrong with the baby if it was not making enough fluid. Or I could have had a rupture and lost the fluid. I explained that I had been leaking fluid. She declared, "In that case, it is much like an abscessed tooth." She explained that, due to the rupture, an infection could develop, which could endanger my life. At this point, the baby would not survive, being only five months' gestation. She requested that we make a decision about abortion. I could not abort this child. I knew in my soul that he needed to be here and that I could not take his life. She stated, "You are allowing nature to take its course."
Although I readily said yes, I noticed David was very agitated. The doctor discussed the issues of the child being born without amniotic fluid during pregnancy. The child could have issues with his internal organs not developing, or he could have brain damage. The lungs might not form correctly, or there could be developmental delays, and we might still have to take the baby before it was ready. I was told to go back on bed rest for another month and take my temperature daily to monitor for infection. The doctor informed us that the chance of the rupture healing itself was minimal. Afterward, my husband stated that he was not sure he could handle a child with special needs. I was working in the field of early intervention and knew I could handle whatever was to come, but I was not sure if I would do this alone.
Jesse was born in December, at three weeks' earlier gestation than his brother. The doctor wanted to make sure we would only have an eight-pound baby. Jesse's birth was a planned C-section. When he was born, he weighed eleven pounds eleven ounces and had a chest that measured fifteen and half inches. Everyone in the delivery room was shocked! He was a healthy baby boy without medical problems. Everyone kept saying, "Do you know what a miracle he is?" My doctor came into my room and, with tears in her eyes, discussed what a miracle this was. I knew how special my children were, because I knew how hard it had been to get them here.
Having difficulty getting through the birth process is an indicator that there could be sensory problems. We do know that birth trauma and prematurity cause issues with sensory development. In hindsight, I see that my boys had sensory issues in the making.
Children with Sensory Issues
We have stated that Mykel was "active"—we did not know that you could double that activity in a child named Jesse. Jesse's list of so-called problems included frantic feeding, tremors (especially upon waking from sleep), difficulty nursing, and constant ear infections, starting at one month of age. By the time he was two, doctors had discovered that he had no openings in the sinus cavities. He had surgery to open the sinus cavities and remove "glue ear" substance (which can cause hearing issues) from the ear canal, and he had his adenoids removed. He was then in the early intervention program, due to delays in speech, social skills, and self-help skills.
Jesse had poor motor planning (the way in which the brain organizes motor movements). He received both occupational therapy and speech therapy. He did not speak until three and a half years of age. At that age, he only spoke with vowels and no consonants. His articulation was not clear to most people until age eight. He stuttered, had tremors, and was extremely active. His attention at age three was two seconds per object.
When Jesse was four, we had moved to Biloxi, Mississippi. We met our new pediatrician, Dr. Couch. Our first visit was to take Mykel in for a refill check on his ADHD medication. During this visit, Jesse was either hanging from the coat rack on the wall or climbing the chairs. When I asked the doctor for help on testing Jesse, there was not a question in her mind. She said in the meantime to give him some of his brother's medication to see whether that would work. She did not want to wait for his appointment, as it was an apparent, immediate need. I thought, At least someone else is seeing what I deal with each day.
God had placed us in a special area. We were blocks from Biloxi Regional Medical Center. Shortly after we moved there, Jesse began having multiple issues. Dr. Couch worked closely with all the specialists at this hospital. We saw a pediatric developmental specialist, the pediatric neurologist, and the pediatric cardiologist, as well as many more physicians. These wonderful professionals helped us walk through this challenging time. Jesse already had the diagnosis of developmental delays and ADHD. He began either turning white, lethargic, and passing out (heart rate as low as thirty) or becoming red faced, out of breath, and exhausted (heart rate as high as two hundred). He was diagnosed with POTS (postural orthostatic tachycardia syndrome) and at age nine was diagnosed with Tourette's. Our pediatric cardiologist, Dr. Boris, was the first to diagnose Jesse with POTS. We were trying different medications to help stop his passing out and to regulate his heart rate.
At one point, Jesse was hospitalized to begin a certain medication. I was saying again how my active little boy now seemed to just lie on the couch all the time. Dr. Boris told me, "You have to get over this. He is not the same child now and never will be." I was shocked into reality. I was still holding on to the way it had been and not seeing Jesse for who he was now. I was grieving the loss of the child that I'd had. I was grieving the loss of my hope for a healthy child. I was grieving the loss of our life and the plans we had made for our bright, active young boy. This wonderful doctor referred us on to Dr. Blair Grubb.
