Samuel came into this world at 3:16 in the morning via emergency C-section for breach presentation. He popped right out after all the commotion. The doctors laughed and said, “3:16? Are you going to change his name to John for John 3:16?”
We said No but decided to look up 1st Samuel 3:16. We read: But Eli called to him, “Samuel, my son!” Samuel answered, “Here I am!”
Indeed, here was our son, the first child to two immature college grads in debt up to their black square caps with tassels. We thought we were ready to start our family, but we were not prepared to be parents. Who is?
We didn’t recognize the difficulties that began almost immediately as something more than the normal stresses of new parenting. Later we would be told that even the breach presentation at birth was an indicator. All we knew? We didn’t sleep more than an hour and a half at a time for the next six months. Samuel had trouble latching for month after month, making nursing sessions last twice as long as typical and leaving me sore and cranky after nursing. When he began to eat solids at seven months, he had trouble swallowing, frequently gagging or pushing food back out of his mouth. He also lagged behind on gross motor skills, sitting up, rolling over standing, crawling just when we were starting to worry.
Just after Samuel’s first birthday, we moved in with my grandparents in a mutually helpful arrangement. My grandfather was dying of Parkinson’s Disease. My grandmother needed the help and we had the flexibility to transfer there. We moved in, chipped in on the bills (still able to save toward a house), and began to help. I stayed home with my grandparents, lugging Samuel around to all of Grandpa’s appointments. Both of my grandparents loved having him around, even though Grandpa’s struggles prevented him from playing with Samuel.
The year was extremely difficult. It’s never easy to watch someone you love die. Compounding the anxieties over Grandpa, certain things became evident about our son. We noticed his strong aversion to noise first. Whenever Grandpa coughed, Samuel would burst into tears and look as if he had been slapped. Poor Grandpa would try hard not to cough, hating to make his great-grandson afraid of him, but no amount of explaining could reason Samuel out of his reaction. He would look at the rest of us with his bewildered red face and tear-filled eyes, sobbing, desperate for a reason why Grandpa would make such a sound that hurt him. He began covering his ears anytime he felt there might be a loud sound and still to this day will cover his ears when he is nervous about the environment around him. Samuel also began crying and running from the room during certain cartoons that were too bright or flashy.
Samuel also cried when I took him outdoors. I remember bringing him to one of the freshly plowed fields that spring. I brought a dump truck and sat down with him in the dirt. He spent several minutes patting the dirt and looking at his hands. Then he got up and toddled back to the house. Sometimes, I could get him to do a few things, like swinging or spinning – he loved to spin and never grew dizzy – but he never wanted to be far from my side outdoors. He never wanted to try riding toys though he enjoyed running in circles in a parking lot or on a gym floor. He never wanted to touch the trees or play in the dirt. He couldn’t stand to be barefooted or accidentally fall and touch his hands to the grass.
He also experienced vomiting spells: waking up at his normal time, vomiting all morning, no fever and then feel fine by the afternoon. We dismissed it as childhood viruses and did not realize until much later that it was something more.
That year, we also realized Samuel’s extreme intelligence. He learned his letters and numbers that year – just one year old. He knew all his colors and shapes, even hexagon and octagon. He could sing songs verbatim after only hearing them a few times. He used big words, even picking up Spanish words. He loved to draw but hated to finger paint. At Christmas, age two, we bought him a puzzle of the United States. Within two days, he could not only tell you every state’s name and put it in the puzzle where it belonged, but could identify the state even when the puzzle piece was turned over or backward. At one of Grandma’s dentist appointments, he pointed to a plaque on the wall and said, “Missouri! Missouri!” I looked and sure enough, there was the word “Missouri.” No one in the waiting room could believe what we were hearing.
Grandpa passed away in September of that year. Samuel, as were my husband and I, was emotionally raw. We couldn’t stay there any longer. My parents then retired, moving to the farm to take over helping out Grandma while we moved back to the city we had lived in previously. Samuel by now was showing extreme signs of anxiety. We thought we understood why. The poor kid knew the sound of a feeding tube churning, knew what happens when an ambulance pulls up and the EMTs rush in, he had lost his Pawpaw, and he had moved away from his Granny Annie whom he loved probably more than me. Our family members assured us that kids are resilient, but we questioned all of our decisions’ effects on our son and wished we had done everything differently. We didn’t wonder that he frequently covered his ears at bright colors, not just loud noises. We didn’t wonder that he frequently ran headlong into us at full speed. We just felt that it was time to live a quieter life and pay more attention to him.
And, oh yes, weren’t gifted kids naturally high strung?
We knew beyond a shadow of a doubt that this kid was gifted. Every week brought more unbelievable academic feats. He taught himself to read by locking himself in his room with The M&M Counting Book, age 2 ½ . He came out and said, “Mommy, I know how to spell 1: o-n-e. I know how to spell 2: t-w-o.” I stood there with my mouth open until he said, “I know how to spell 12: t-w-e-l-v-e.”
After he figured out how to count backward from one hundred to zero, my brother introduced the phrase scary smart. “If you do a good job parenting,” my brother said, “He’ll end up curing cancer. If you screw up, he’s going to end up like the uni-bomber.”
The pressure was on and now, in our quieter life, his eccentricities became more apparent. He frequently rejected certain textures. He couldn’t jump. He crashed into other kids. He talked to others and us at an almost nose-to-nose distance. He wasn’t learning to go to the bathroom by himself. If food became stuck in the roof of his mouth he couldn’t scrape it out with his tongue. And he continued to hate being outside.
Friends and family tried to advise and even total strangers chimed in: “You let him read too much,” “You don’t spank him enough,” “He needs to be in a preschool instead of staying home with you,” “You coddle him too much,” “You’re abusive.” Behind closed doors, I was hard on him, spanking frequently as I had been raised. I remember after one particular raking by a friend who believed I was too indulgent, I locked him outside so that he couldn’t come in, removing myself from the picture so that I wouldn’t give in. Then I watched from the back window as he sat terrified on the back steps, screaming. He didn’t get up and explore. He didn’t get moving. He just curled up into himself on the steps and sobbed. I cried in the kitchen as I watched him, sobbing because I was finally waking to the deeper truth: something was really wrong and I had no idea, no knowledge, no training, no resources, no rescuers, no way to help Samuel. I felt completely alone at that moment, realizing not even my husband could see that this was more than a spoiled child. Worst of all, I blamed myself. I blamed myself for moving in with my grandparents, for spanking him, for my depression during pregnancy and postpartum, for not cuddling him more, for not sleeping with him at night when he cried, for letting him watch T.V., for letting him read books, for not going outside right at that moment and holding him down in the grass so that he could get used to it against his skin.
I tried to hold onto my dreams of a happy family, of a normal future; I tried to keep up the façade, but there were times when deep inside I felt like he would have been better off in foster care. I never would have given him up, but I desperately wanted to be the kind of mother he deserved and needed.
And, oh yeah, we were having another child I was sure I would screw up as well.
When Samuel’s baby brother Gideon entered our life, Samuel was three years old. The night Gideon came home from the hospital, Samuel and I sat down with the new baby by the Christmas tree. Samuel read him simple stories but had no problems with words like Christ incarnate and magi. He instead struggled with moderating his touch: squeezing the baby too hard or accidentally hitting him when he just wanted to pat his face, much the same as a one year old would have done. He didn’t want to make the baby cry, so he began holding his hands behind his back instead of reaching for him. His favorite game we developed to include the baby in Samuel’s world involved all of us lying on the bed to form letters. The baby became the middle stump of the capital “E” or the cross for the “T”. Samuel could direct us from his position in the letter with an incalculable ability to catch us if we had the letter backward. Boyd would argue with him and say, “No, we’re right,” but when Samuel insisted he would stand up to check, looking down on our shape of the letter and realize Samuel was right.
Gideon walked at ten months and began jumping at a year old. Samuel was four and a half and still could not jump. My husband finally began to see Samuel’s problems as more than just normal childhood behavior or normal reactions to painful circumstances. I was at my wits end, completely exhausted with trying to make him play like a normal kid and frustrated that none of the ways I was parented worked on my son. I wanted to stop spanking, but at the time I knew no other way to deal with him. I struggled with feeling like I would betray my parents who had raised me with spankings and yet loved me beyond shadow of doubt. Stopping punishment altogether became just as insidious to Samuel’s development.
Deep in my heart, I knew we needed counseling and I often felt that Samuel needed a big padded room with lots of fun soft climbing toys so that he could crash and spin and squeal. He needed someone to do exercises with him, someone who could motivate him better than I could. But we were still paying off those cap and gown debts. I assumed the insurance company would not pay for our issues so I turned to two hours of Dr. Phil and Oprah every afternoon and I turned to our school system.
For my two hour counseling session as I came to call it, Samuel used to sit next to me and watch along with me. He’d ask, “Why are we watching this?”
I’d say, “Because I need to be a better mommy.”
“Oh,” he’d say. Then, after skill after skill was learned and implemented, our life began to change.
One day I said, “Because I need to be a better mommy.”
Samuel answered, “But you already are a better mommy.” I cried and hugged him tight.
Recently, as we were preparing him for first reconciliation and communion, I told him about how I went to confession after the last time I blew up at him and spanked him. He had to think awhile before he could remember it; it was so far in our past. Then, he finally said, “Who’d you confess it to? Dr. Phil?”
Watching Oprah and Dr. Phil, I also got a better sense for what I should expect out of a child his age and the feeling grew that Samuel needed something more than improved discipline, something more than the needs of a normal child. I also discovered, through reading websites about gifted kids, that gifted kids are not necessarily high strung and volatile. I hoped that the school system would be able to help, but twice we were turned down for the childhood development center. We were told both times that he did not have problems with academics so the school system could not help. They suggested I put him in daycare a few days a week under the theory that being around other kids would resolve everything (a preschool would not take him since he was not potty trained). I followed through on the advice but it was soon obvious he would not be able to function: certain bright colors, textures, loud noises. . . typical parts of a crowded daycare sent him into “Freak Out Mode” as we called it: screaming, curling up in a ball, muscles rigid, and covering his ears. His mornings of vomiting also became more frequent, but again and again I dismissed it as childhood viruses.
At age four my son could sit on the potty and read the whole “Frog and Toad: A Collection of Stories,” but he could not make his poop come out on the pot. He also couldn’t pedal a tricycle or swing, the gross motor mile markers for having the muscle strength for potty training. We did everything we could to get him moving. We forked out the cash for year round gymnastics. I kept him at the pool during the summer. We went to parks and the city’s indoor playroom where he could climb onto equipment and avoid the grass. He loved to go to McDonald’s to watch other kids play, but wouldn’t go in the tubes if anyone else entered and in all of these places, one ill-fated movement, one bad taste, one texture he didn’t find soothing, and bam! He fell into Freak Out Mode and I went home humiliated, guilty, distraught . . . I’d run the gamut of emotions on the way home and pull in the driveway feeling helpless. I persisted though. Trying everything I could until finally, at age 4 ½ he mastered toilet training.
Once Samuel became potty trained, we immediately entered him into a preschool: a calm, controlled, two-hour program with soft colored walls, Mozart playing in the background, and a low teacher-student ratio. He loved being with the other kids, but right away the teacher began noticing problems. I feel so lucky that he had this amazing teacher who could look at his behavior and see that this was not just an ill-mannered kid. She immediately began talking with me about what she observed in class: his inability to handle noises, his “crashing” into other kids, his reactions when other kids startled him, and his anxieties and emotional outbursts. I finally felt that I had an advocate: someone who saw what I saw, thought what I was thought, and wanted the best for Samuel. I remember a particular conversation she began, a conversation that as a teacher she probably feared having to bring up, but she did. Instead of denial, however, she found I burst into relieved tears. We both ended up crying, both of us hurting for Samuel and knowing something was wrong.
Not long after, at a routine check-up, the doctor noted that Samuel’s weight had sunk on the charts from the 95th percentile to the 25th. The doctor did not seem too concerned about it since he was still on the chart, but I became extremely worried. The doctor asked me if I had any medical concerns with him. I brought up the vomiting, but she too dismissed it as childhood viruses. She asked me if there was anything else. I said “No,” but kept thinking, “Maybe I should tell her about these behavior problems.” I didn’t, but went home chewing on it. I called the next day to schedule another appointment.
I came in loaded with notes I had jotted down: lists of odd behavior, an estimate of how often his vomiting spells occurred, the short list of foods he tolerated, his drawings and pages of his “gifted” writing . . . all the things I had brought up with Parents as Teachers but never thought to mention to our medical doctor, never knowing that this was the route that would be fully covered by our insurance. The doctor immediately took me seriously. She looked over each page carefully and recommended we see a geneticist, a psychologist and get an evaluation for occupational therapy. She scheduled a few basic tests to check for reflux and put him on Zantac. She had me continue charting, giving me specific instructions, and the preschool teacher also wrote up several of her own notes. The doctor feared autism, but we were soon to learn another set of words that would change our lives for the better.
The geneticist finally diagnosed Samuel with Sensory Integration Disorder, now coded as Sensory Processing Disorder.
We learned that his nervous system could not tell him when he was too close to another person’s face, could not tell him how to pedal a bike, could get overloaded and confuse signals, making him cover his ears when a color overwhelmed him. His eyes could not see something heavy and tell his muscles to apply the right amount of pressure. His inner ear could not send a signal to the brain to let him know he was dizzy. His skin took in every light touch as a threat, making him jerk away or hit back. The neurotransmitter pathways were not connecting in organized and predictable patterns.
The first visit to the occupational therapist felt like finally coming up for air after swimming through an underwater cave. She knew just what Samuel needed and could guess his reactions. They were instantly best friends and at every visit I learned new exercises to do with him at home. As I learned more and more about his disorder, I became less bewildered and frustrated. I knew what to expect and began breaking down my expectations to meet him at his level and raise each expectation when he had met the original. He eventually began to tolerate experiences like the feel of grass against his feet and the feel of a friend brushing against his shoulder.
We also began seeing a psychologist who reinforced (and taught my husband) everything I had been learning off Dr. Phil and Oprah. I thought I’d feel like a frog on the dissection plate, but I quickly learned that this man was a resource: I could ask him anything and get a well-informed answer with encouraging comments that made me feel like I could handle making the changes in our home. He helped us work as a couple to come up with practical solutions for disciplining our son, solutions we both contributed to. He helped my husband see why it was important in a logical tone of voice, like they were discussing the design of a building. My husband came away excited about our plans rather than just defensive and deflated. We began to learn to parent with consistency and discrimination, without the need for spanking. We tried Dr. Phil’s suggestion to remove toys for bad behavior and have Samuel earn them back. We instantly found that with less toys, he was less overwhelmed. His behavior improved immediately even though he did not want the toys back in his room. Our psychologist told us at one point that we needed to decide what would be our “normal” behind closed doors: what behaviors would we insist on and what chaos could we tolerate for the sake of happiness and peace within our family unit? We had to think through what would be our new state of normal and we grew comfortable with that view of our home life, not expecting our life to look just like everyone else’s. More and more we found our time at home together to be the best part of the day. We discovered that under all the frustration Samuel exhibited, there was a kid in there who wanted to accomplish, wanted to love, wanted to laugh and giggle, wanted to have friends and enjoy life. We became part of allowing his inner self to emerge and thrive.
We held Samuel back a year before allowing him to enter Kindergarten: giving him an extra year for therapies and preschool. He made remarkable progress and my husband and I got a handle on understanding when to require more of him and when to give him a break. The spring before he entered Kindergarten, we sat down with the teacher and the school’s special needs coordinator. I came with his history and medical charts, but I also came with an understanding of Samuel’s specific condition and a willingness to work with the school.
“I can tell you lots of ideas, but you’ll have to figure out what works best for you since I do not have any experience in the classroom,” I told the teacher. “I don’t want you to feel like I’m demanding specifics. We’ll just figure out what works.” The Kindergarten teacher took the book Out-Of-Sync Child to read over the summer. She dropped it off at my house over the summer and I could tell she had both read it and come up with sensory plans to help Samuel deal with the classroom. The year went wonderfully. She did have adjustments she had to make in the classroom and occasionally there were discipline issues that came up, but all in all he had a great year.
First grade went similarly, but the teacher found she had fewer adjustments to make than the teacher the year before.
Samuel is now 8 years old and this year I did not sit down with the teacher before hand. I wish I had, just to give her more time to prepare for him, but she rolled with the punches, figuring him out quickly after a few early concerns. I feel extremely lucky to have both a school and a medical support team who love Samuel, require a lot from him, and support me as well. I know the loop now. I know how to take concerns of the teacher, relate them to the P.T. who then updates the doctor, who then orders the O.T. or the speech. I know how to work with the OT to figure out adjustments to his routine and relate things we’ve discovered back to the teacher or his dad or the doctor, working new systems into place that help. At no point did we learn something that proved to be a cure, but throughout the journey we learned little tricks, like pieces of the puzzle we finally fit into place. Eventually, through the teachers, OT, PT, doctors and ourselves, we began to put a picture together that looked recognizable, serene, beautiful, comfortable . . . I know other parents do not have the same experience, struggling under educators who refuse to make adjustments, school systems that want to lump on their own quick fixes, or doctors who do not believe in therapies and only want to experiment with medication. Some areas of the country do not even recognize the condition as a disorder, thereby denying effective treatment when it matters most. This is heartbreaking to me, because Samuel is proof positive that correct treatment leads to improvement.
At this point in our journey, Samuel occasionally sees the school counselor for some of his emotional concerns. We are no longer seeing the psychologist, but would not hesitate to go back in should we begin having serious problems with Samuel again. He is in physical therapy and again in occupational therapy. He has been dismissed before, but sometimes his nervous system can’t keep up with his growth spurts. Presently, his handwriting is atrocious, but then he could probably use the word atrocious in a sentence so I’m not worried about his future job placement. He still has mild body space awareness issues, but he can mingle with a group of friends without crashing. He sleeps eleven hours a night if our schedule allows (a sign that his body is still working double time to acclimate to the environment around him.) He still becomes anxious if bright colors flash across the T.V. and covers his ears when he’s nervous. His solution is simple: stand just outside the door of the room until the scene passes and then he reenters, no screaming, no panic.
The improvements far out weigh the lingering problems. A new acquaintance would not even question Samuel is anything less than normal. His behavior in general is considerate and obedient. He takes pride in completing his chore chart and doing his nightly exercises. He has become comfortable with the outdoors and even enjoys camping with his dad. Years have passed since his last vomiting spell and the last time he fell into Freak Out Mode. He only occasionally needs Zantac, usually around major changes like the beginning of school in the fall or an extended stay with his grandparents. (His grandparents, by the way, have all learned to handle him and his needs as well.) Though he lags behind on his motor skills, he managed to learn to swim and ride a bike. He learned to flip over on the swing set rings a few weeks ago and we all stopped to celebrate. We do not expect he will ever have the coordination to enjoy organized sports, but he cheers his brother on at Gideon’s soccer games. I love those moments. His brother, now age 4, recently learned how to shimmy up a doorframe, using his bare feet and hands to climb to the top. Samuel grew discouraged that he couldn’t do the same trick. I overheard him say, “Gideon, could you just show me some of your techniques?” Gideon patiently worked with him, but Samuel still couldn’t get it. He gave up for the moment, but every night that Gideon shimmies up the door, Samuel once again tries. He may eventually get it; you never know.
We know that we have a long road ahead of us, with each growth spurt evolving into developmental concerns, but we also feel confident that this road is not a dark tunnel. It may be a little rocky, but it is possible to traverse and may prove to have exciting views along the way. I couldn’t imagine life without his smile and sense of humor, nor his love for stories, his drawings, and his care for his brother. His need to have structure has motivated me to become more predictable and steady. Samuel, our son, is indeed here: fully present in the life God gave all of us.
Author: Sara Ann Denson
Copyright © www.sensory-processing-disorder.com