To tell Kenny’s story separate from my own feels important, yet challenging. The line that separates our experiences is blurry, because we have been together every step of the way. But to attempt to tell his story feels necessary. It honors the pain that he alone felt.
Kenny began showing his personality in the womb. He was so active during every ultrasound, that the nurses referred to him as rowdy. My husband and I would laugh and wonder what our combined DNA would produce. We learned of his heart defect a week after the 20 week anatomy scan. We were told he could be incompatible with life by the first cardiologist. We continued to have the echocardiograms through the pregnancy. At 36 weeks, Kenny was breach. The doctor decided an external cephalic inversion was necessary- literally grabbing the baby through my skin and forcefully turning it. It was horrible. Kenny was in distress, and so was I, and it didn’t work. I had acupuncture at 37 weeks, and he flipped the next day. At 39 weeks I had acupuncture to help labor begin within two weeks. My water broke the next day, and at 4:33 am, Kenny was born with the cord wrapped around his neck. His oxygen levels were not great.
We brought a beautiful baby boy home with echocardiograms scheduled, anticipating that as he grew, the murmur would close. It didn’t.
Kenny did not nurse peacefully. I knew something was wrong. We visited the lactation consultant, who demonstrated how to be assertive with nursing, a bottle, and a pacifier. Kenny screamed with terror in his eyes. It didn’t feel right.
Kenny did not gain weight. We went in for weight checks every other day. The cardiologist was concerned with his shallow, rapid breathing, in addition to his lack of weight gain.
At eight weeks old, I used a syringe to get drops of breast milk into Kenny’s mouth at 3 am. I packed a weeks worth of supplies in a bag, certain it was time for his heart surgery. Kenny had signs of being listless, and his lack of eating was blamed on his body’s need to conserve calories to keep his heart working.
We ended up in the ER that afternoon, and Kenny was dazzled by the flashing lights, but would scream until his whole body was red when the nurses performed their vital checkups every two hours. It seemed his discomfort and distress was less important than unswaddling him.
An SLP (Speech Language Pathologist) came to observe his suck, swallow, breathe motor plan, and his latch. Both existed, just in very brief amounts of time. Due to his continued lack of weight gain, Kenny’s heart surgery was delayed, and an NG feeding tube (Nasogastric tube) was inserted in his nose. He was prescribed 90 mL every 3 hours of breast milk. Initially a hand gavage was implemented. My husband and I quickly requested a pump so Kenny could sleep, and also so we could sleep. He was weighed before and after every feeding, again with necessary information being derived, but leaving imprints on his brain.
Kenny hated the TV in our hospital room. He would scream if it was on. The nurses again called him rowdy, from how he’d kick them and scream when they’d unswaddle him. Seemed everything left him in distress.
His heart surgery was performed, putting a patch on his VSD (Ventricular Septal Defect), and a stitch in his ASD (Atrial Septal Defect), which was previously undetected. They also discovered his heart was shifted and rotated, which was also undetected. My husband and I closely watched the monitors in our PICU room. Our tiny baby was under a sea of tubes and drains. Kenny’s oxygen levels dipped the night following his surgery. Kenny was again in distress.
When it came time to remove the breathing tubes, we were told it would be simple. It wasn’t. We walked into our room and saw a mass of nurses and doctors lifting our baby in the air, as they re-inserted the breathing tubes. It seemed he forgot how to breathe. A bronchoscopy was performed a few days later, verifying his anatomy was fine.
Once we were removed from PICU, we found our baby’s pain was unbearable. Staying ahead of the pain with Motrin and Tylenol was a lesson I had to learn the hard way.
He came home on his NG tube and pump, and we kept him comfortable as best as we could. We felt life his life could work towards becoming typical now.
We attended our first of three feeding clinics. I was advised to try every bottle available, until we found the one he would take. We finally discovered the secret recipe to getting him to eat a full meal- swaddled in a fluffy blanket, bouncing, looking at lights, with a specific bottle, and very warm milk. Once the milk became room temperature, he’d stop eating. The milk had to be reheated.
At 4 months old, Kenny began gaining weight. His cardiologist verified that his heart was healing. My husband and I felt like life would become simple.
Over the months, Kenny was not meeting any developmental milestones. We began seeing developmental pediatricians, endocrinologists, geneticists, feeding clinics, early intervention evals were performed, food allergy profiles were performed. No definitive answers were found, other than he was still recovering from his heart surgery. I asked about autism. They all said no, because he made great eye contact.
Early intervention began at 18 months, when his sister was born. He was delighted with this baby sister, but could care less about the grown ups who initiated games catered to his interests of cars and trucks. They noticed how he loved ice chips and wind chimes. So had I, but I just played upon those interests to encourage growth. Kenny was so savvy to new people in the house- he’d get picked up, and he would push their faces to the windchimes hanging in the window. I opted to fasten the windchimes at his height on the wall on plant hangers, to encourage him to stand up, work on his balance, and start cruising. The early interventionists were particularly fascinated by this.
Kenny was very social. He loved his daddy, he loved women. He loved his baby sister. But he didn’t know how to play with them. By 21 months, he wasn’t walking or pointing to objects, let alone speaking. Clinic speech therapy, physical therapy, and occupational therapy (OT) began. Our schedule was packed. His emotions were intense. His peers were passing him up.
Once OT began, his sensory needs began to be addressed. In speech therapy, picture exchange cards were used and encouraged to be used at home. Our house was covered in velcro and laminated cartoons. He wasn’t interested in the drawings. But I could see his interest and engagement in children’s books with real images. I could see his brain understood concrete photos, not abstract drawings. Why weren’t we honoring that?
Time progressed, and I started using sign language and using images of hands signing “more” and “all done” at every meal and every bite. His hands had been clenched shut most of his second year of life, and his OT and I agreed we needed to do something about that. His neurologist requested a brain MRI to rule out anything structurally wrong that could be causing his developmental delay, so I requested a second tongue tie revision by an ENT, while he was under anesthesia. The ENT indicated he probably would not start speaking as a result of the revision, but Kenny’s OT felt if his jaw and mouth didn’t feel relaxed, then his shoulders wouldn’t feel relaxed, clear down to his fingers and and hands. So we had it done. And wouldn’t you know it, his hands opened up a month later. And after countless repetitions, he started signing more and all done, in a modified fashion.
The MRI also showed some irregularities- a small pineal cyst, assymetrical fluid, and patches of hyperintensity white matter. Was it from the external cyphalic version? Was it from the cord being wrapped around his neck at birth? Was it from when they took the breathing tubes out and he couldn’t breathe on his own? Did his brain develop this way in the womb? No answers. But annual MRIs were requested for the following five years.
Eventually we ran out of tests. Insurance denied a whole exome sequence genetics test, after the microarray came back normal. Yet he has continued to float on the -3% to 1% height and weight charts. Professionals noticed his long, thin fingers, toes that curve, and speck of a pinky toe nail.
Eventually I opted out of PT appointments, and let his early intervention PT take over. When he didn’t have to wear orthotics anymore, it felt like a victory. In reality, everything felt like a victory.
Teething was tough. And who knows if it really was the teething. But this poor little boy screamed in terror. We were giving Motrin, which often helped to stop the screaming. I tried essential oils, I tried Thomas the Train videos, I tried tiny ice chips, my husband tried being silly, we tried anything. And anything that peeled a layer of misery off our baby was implemented daily.
Kenny couldn’t use utensils and the feeding challenges hadn’t stopped. Every meal included a recipe of sensory input, while we would hold our breath that he’d get some proteins and fats eaten. To this day, the feeding problems are a top source of anxiety for us all.
It came time for Kenny to transition from early intervention to the special needs preschool. My husband and I were terrified, but the teachers assured us he was ready. We started with 2 of 4 days a week, with no bus transportation. It quickly moved to 3 days, then 4. He loved school. Once I decided we could no longer disrupt our 1 ½ year old’s naps by driving him to and from preschool, he began riding the bus. He flourished. Preschool has been an absolute delight for everyone. Now he’s transitioning to kindergarten, and I’m again a ball of nerves, not convinced its the right choice. But I’m sure he will prove once again he’s ready for the next step in life.
At 3 years and 2 months old, a psychologist from our therapy clinic diagnosed Kenny with moderate to severe autism. It felt like a relief. I had asked every professional if he could be on the spectrum, and they said no, he makes great eye contact. Our psychologist shook her head at this statement I repeated to her. I felt like with this doctor, we were going to really get somewhere with Kenny. We started 20 hours a week of Early Start Denver Model, and two of my dear friends became certified ABA (Applied Behavior Analysis) interventionists, and began playing and working with Kenny. About a year later, Kenny started making tremendous progress socially, with appropriate communication, gross motor skills, and behaviors.
Kenny’s SLP (Speech Language Pathologist) decided it was time to try a basic alternative assistive communication (AAC) device at 3 ½ years old. His oral sounds included mama, dada and nehneh, three very important people in his life, and he was effectively using a handful of modified signs, but only those of us who knew him inside and out spoke his language. People adored and loved Kenny, but didn’t know what his hands were trying to tell them. So in order to give him a more robust inventory of words, and to give him power of communication (that didn’t include aggression to protest), we began the Go Talk 9+. He wanted nothing to do with it. But we persisted. We set it up with “scoop” and “dump” because he loved the sensory table. Day after day, I’d set it up in the beans table, pushing scoop as he and I scooped, pushing dump as he and I dumped. He didn’t care.
His SLP asked me one day, “what would Kenny say to us if he could?” I told him it wouldn’t be appropriate. This 26 lb tiny boy was scrappy. So we opted for “I don’t want to”, “take a break”, “more”, and “all done”, using the images of the sign language signs. He still didn’t care, and we still modeled using it.
On July 4, 2017 at nearly 4 years old, we went to a friend’s community swimming pool. It was cold water, in the shade, with tons of kids splashing and screaming and jumping in. No way was Kenny getting in the water, I thought. Shoot, I didn’t want to either. My husband and our 2 year old daughter got in, and asked us to join them. So I sat down on the edge of the pool with Kenny on my lap, trickled water on his feet, and propped the Go Talk. I said, “Kenny, do you want to go swimming?” and he immediately pushed “I don’t want to. I don’t want to. I don’t want to.” I laughed and squeezed him with joy. I called over his daddy and said, “Daddy, Kenny wants to tell you something. Kenny, do you want to go swimming?” and right on cue, “I don’t want to.” We all were delighted. He then proceeded to push “more” after every time his friend would do a flip into the pool. His world unlocked right in front of our eyes.
He quickly progressed to an ipad. I designed the communication app with his interests in mind. I wanted him to want to speak to us. I wanted to teach him about the world around him, but he wouldn’t sit through a book. So I started creating ways for the communication app to teach him. Very rapidly, Kenny began progressing academically. We went from uncertain if he would ever read or write, to introducing a KinderBoard, so he could eventually take his love of letters to typing whatever he would want to talk about. We’re not there yet, but I have full confidence that he will tell beautiful stories.
I know our journey is going to have so many more twists and turns. But having gone through this adventure with Kenny has changed our whole family. I’m discovering that he hears everything we say, that if someone mentions open heart surgery, he is filled with emotions. That alone is a discovery that I’m looking forward to figuring out- does he remember his surgery? Does he feel pain more intensely due to his autism? What’s it like to experience the world so vividly as an autistic? I want to know his story. And by putting in the work now, giving him the gift of communication, one day he will be able to tell me the answers to my questions. Kenny will tell his own story.
