June 10, 2012
Some dates remain on your mind longer than 24 hours. Not just the ones that you’re forced to memorize for your sixth grade “Mother of All Social Studies” tests (Pearl Harbor Day: December 7, 1941), but also the ones that change the course of your own history. June 10, 2012 was one of those “fasten your seatbelt and plug in the GPS, because it’s going to be a bumpy ride” kind of dates for me. Not that anything particularly infamous happened that day. In fact, it was a sunny day. It was a Sunday. It was my son’s birthday.
THE EARLY YEARS
From the moment I laid eyes on him, he was my guy. My guy, Ky. And whatever highs or lows may stem from that moment, I’d always show up. During year one, he reached all the typical milestones. Smile. CHECK! Laugh. CHECK! Roll over. CHECK! Sit. CHECK! Eat solids. CHECK! Babble. CHECK! Crawl. CHECK! Say “Mama” and “Dada”. CHECK! Walk. CHECK! The list went on and on. Other than a little gas here and there, the cutest hiccups you ever did hear, some sleepless nights, and a little colic crying (all wholly memorable in the moment, yet hardly memorable at this moment), all of our pediatrician visits were golden. Year two began and ended as any standard sequel might: same story line; older cast. Kyle learned his ABCs, broadened his vocabulary, explored every nook and cranny of every park in town – twice, thrice, and probably even more times – and continued to pass through his regularly scheduled wellness exams extraordinarily well.
DECEMBER 16, 2014
Then. December 16, 2014. Another date. Another child. Another turning point in our history. My best Erik came out with show stopping dimples. It was as if my grandmother, who had passed away 5 months beforehand, had passed her smile along with the instructions to never stop making others appreciate that smile. Most of us welcomed him into our family on that wintery Tuesday morning as if he was meant to be here all along. As often happens when a new baby enters the picture, Kyle experienced a period of definite adjustment by adjusting his behavior. He began to do a little wall hitting, a little self hitting, and a little note hitting; that is to say his temper tantrums trumped any temper I had ever encountered before. Holy Moly! This kid had anger. To give Kyle some credit, at 2 and a half years old, he had a lot of elements at play in his life. A new brother. A new room. A new twin bed. A new long lasting winter virus of some variety or another. New milk (I decided to go from regular whole milk to organic milk to 2% milk after reading a series of articles about which milk is best for a child his age). New potty training policies. And, to top that off, a new “surprise” in his diaper: diarrhea. Constant diarrhea. An entire winter season decorated with diarrhea! Well, abort the new milk. Abort the potty training. My new maternity leave mission was to a) get this kid better, and b) better the bonds of brotherhood. At one point I remember going to my pediatrician and picking up the proper “equipment” to extract a stool sample at home, delivering it to the hospital for analysis and dropping the remains of the diaper back off at the pediatrician for a visual opinion. Once again, all results came back golden. Nothing to be concerned about. Just diarrhea. Do the BRAT diet. Well, over time, the diet did harden up his stool, but it was hardly a tool for the increasingly bratty behavior we’d continued to endure from our now 3 year old.
The summer before Kyle started 3 year old preschool had me worried. He needed to get potty trained. With some mishaps on our dining room chairs, the bathroom floor, and of course his bed, we were grateful to check that one off the list. But I was also determined to get his behavior in check, which proved to be the greater challenge of the two. At soccer, Kyle would run down the field, and keep running. At the park, he’d run in front of a swing, and nearly get knocked to the ground. In our front yard, he’d take off for the street. Holding his hand at all times became an absolute necessity, because for Kyle there were no understandings of what could be considered dangerous. Listening, focusing, following directions, sharing, and displaying an understanding of what to do no longer produced golden results for us. Within a week of starting preschool, I received a phone call from his classroom teacher stating that Kyle had been sent to talk with the director of the school because he had become a safety issue. Apparently they had had a fire drill, and the sound of the alarm caused him so much alarm that he ran out of the classroom and down the hall. Thankfully, he was not able to leave the building. I took this opportunity to open up to this lovely, concerned woman about all of my increasing concerns: the lack of attention; the ear covering; the hand flapping; the tiptoeing; the lack of eye contact; the emotional highs and lows; etc. By November, at about 3 and a half years of age, she suggested we get him evaluated by the district diagnostic and evaluation team. And just as we’d grown accustomed to, the results were golden. Kyle passed everything. Every single thing. Hearing. CHECK! Vision. CHECK! Fine motor. Check! Gross motor. CHECK! Cognitive. CHECK! His social/emotional score was a little borderline, but those results were calculated solely on the information we as parents provided and not based on anything the team observed. They say no news is good news, but when you’re looking for answers and you’re begging for HELP, golden tickets don’t lead anywhere magical. Throughout the remainder of the school year, I continued to question Kyle’s development. Something wasn’t right. I’d rewatch home videos of him as a 2 year old, engaged in 2 year old, two way creative dialogues with him and his toys. I’d compare those videos to the play I saw before me: Kyle digging in bins, dumping out toys, clutching toys in his hands, moving on to new bins and new toys, and not really playing with anything. I’d compare those videos to the level of conversation I saw before me: Here’s a very bright 3 year old boy who knows plenty of words, and yet all I hear over and over is him quoting different sayings he’s memorized from television. For whatever reason, Kyle’s social skills, conversational skills and behaviors had reached a serious digression, and I became seriously worried sick over his development.
The summer before Kyle started 4 year old preschool, I decided to sign him up for Park District t-ball. I wanted him to have the opportunity to engage with other kids his own age and continue to practice his listening skills, as well as the importance of following directions. The 45 minutes we spent at t-ball each week felt like a million. Just as with every single Park District class we had signed Kyle up for since he was about 2 and a half, I was the over energized puppeteer, and he was my lethargic puppet. While all the other moms relaxed on the sidelines and watched as their toddlers did their best to sit, listen, participate, answer questions, and engage with other kids, I found myself having to mastermind any move Kyle could make. I had to hold him in place in the outfield or he would run for the trees. I had to hold his hands on the bat and help him swing or he would drop the bat and run for the trees. I had to run beside him as he ran the bases or he would run for the trees. I had to tell him when to listen, what answers to give to questions, what to say to other kids. Without me, Kyle’s puppet lay lifeless. If he heard people talking to him, he either didn’t feel the need to respond or didn’t know how to. The focus and the understanding were just not there. His body was constantly in flight, running away from reality. And if it wasn’t in flight, it was tired. Dead tired. If he wasn’t running away from the field, he was laying down in it, even if the ball was less than a foot from his glove. In art class, I had to hold him on my lap and move the brush with him in his hand or he’d run away. In gymnastics, he ran from station to station while all of the other kids patiently waited their turn in line. In swimming, he’d drink the pool water and spit it at other kids. Frustration. Concern. Sadness. Embarrassment. Panic. Anxiety. Love. These feelings boiled within me.
Our pediatrician recommended we take Kyle to a Developmental Pediatrician. Because the waiting list to see a specialist at our preferred hospital, Lutheran General, is so lengthy, we decided to take Kyle to Northshore. After two visits, Kyle was given a script for a possible sensory processing disorder and was advised to begin occupational therapy. Again another waitlist. And this time, the waitlist was just to have an evaluation for occupational therapy. Not to actually begin OT sessions. Kyle had received his script for OT in July of 2016 and finally had an evaluation completed in October of 2016. The therapist who evaluated him recommended that he be evaluated for speech, as well. While the OT evaluation did show that Kyle could indeed benefit from services for sensory processing, his speech evaluation further revealed that Kyle has a receptive processing delay and could benefit from speech therapy. Even though Kyle has an extensive expressive vocabulary, he may not understand what others are saying to him or asking of him, and that is causing a disconnect in his conversational speech. We put Kyle on the waitlist for both, and he finally received a call in February of 2017 to begin OT.
Meanwhile, Kyle’s performance in 4 year old preschool was not improving. In November, another fire drill related safety issue prompted the school to hire Kyle a one-on-one teaching assistant. Apparently during the regularly scheduled fire drills, Kyle would cover his ears, hide, and refuse to exit the classroom. We completely understood and supported the school with their decision to hire an aid, however, this set off a series of questions in my mind as to what needed to be done – IMMEDIATELY – in order to make sure Kyle could be successful the following year in Kindergarten. I contacted the district right before winter break and asked them to set up a time to observe Kyle in the classroom after break. These initial observations led to an arrangement for more extensive observations, evaluations, and rating scales to be done on Kyle. After the diagnostic team had the opportunity to conduct their evaluations, and analyze and discuss their results, they arranged a formal meeting with everyone involved. On March 7, 2107, we agreed on an educational diagnosis of Autism for Kyle. Once the diagnosis was made, the team worked together to create an Individualized Education Plan (IEP) for him. The IEP would become effective immediately following spring break. Kyle would switch from his Park District Preschool class of 19 kids to a specialized district preschool class of 9 kids. There he would attend morning preschool for 5 days a week for the remainder of the school year, and receive speech, OT, and social work. For the first time in years, I felt like I was making process.
COPING WITH A DIAGNOSIS
I would be lying to myself if I said that the diagnosis of Autism, that the label of Autism, didn’t sting just a little bit. Sure, I had googled “symptoms of Autism” and “symptoms of sensory processing disorder” for years. I had wondered if Kyle had Autism or SPD for years, as many of his behaviors matched both conditions. I was prepared for an Autism diagnosis. I was desperate for HELP, and this diagnosis was going to give him just that. Yet, when a professional looks you in the eye and tells you that your son, your Ky Guy, the one who made you a mom and the one whom you promised to show up for always, has Autism, you hear the reasoning. You nod in agreement with the next steps. You thank them for their support. But you’re mind isn’t really listening to the words coming out of the professional’s mouth. Your mind is zeroed in on your pounding heart. On images of your little guy, who needs a hug more than anything, and vice versa. The tears come as soon as the car engine starts, and they don’t stop until your whole body has finally had a chance to catch up with reality. In the end, the reality is that the diagnosis doesn’t matter. The label doesn’t matter. None of that changes who Kyle is, or what Kyle needs. I wouldn’t change the diagnosis for the world, because I love who Kyle is, and I’m more than happy to give him what he needs. Yet, part of me questions the diagnosis. Sure he has symptoms of Autism, but is he really Autistic? They say if you’ve met a person with Autism, you’ve met a person with Autism, as no two conditions are exactly the same, but could Kyle display autistic symptoms and not be autistic?
About a week after Kyle started at his new preschool, I received an email from the social worker informing all parents that the Pediatric Celiac Center at Lutheran General Hospital would be holding a free screening for Celiac Disease on Saturday, March 18th, but that our last chance to register would be that afternoon. Without knowing a thing about Celiac Disease, I quickly emailed the contact at Lutheran General and registered Kyle for the screening. I was simply determined to follow any advice given at that point. After I registered Kyle, I took a minute to breath and to google “Celiac Disease”, and within seconds of seeing phrases pop out on the screen such as “gluten free diet”, I was curious. Since March 7th, I had already read numerous articles written by people claiming that a gluten free/casein free diet “cured” their child of Autism, so the idea that a gluten free diet may be the “treatment” I’d been seeking for Kyle was already planted. Still, we dragged our little guy to the clinic to get his blood drawn that Saturday afternoon truly thinking that this was just another failed attempt in our history of failed attempts, but at least this time it was free. No insurance claims! Less than a week later, we received a call from the doctor claiming that Kyle tested positive for Celiacs Disease, a disease that I knew absolutely nothing about the day I registered him for the screening. Kyle’s score was a 96%, where the normal range is less than 20. In April of 2017, Kyle had a second blood test done to determine that he does carry the gene for Celiacs Disease. Finally, in May of 2017, Kyle had an endoscopic biopsy of his small intestine, which confirmed his diagnosis of Celiacs Disease.
At a follow up meeting, Kyle’s doctor introduced us to a rating scale that they use for damage done to the small intestine. On a scale of 1 – 3, 3 being the most damage that could be done to the small intestine, Kyle is at a 3. My Sweet Ky Guy! His poor body may have been malnourished for years! But just how many years has he had Celiacs Disease for? I’ve read that a person needs 3 things to happen in order to have Celiacs Disease: 1) They need to consume gluten (CHECK!); 2) They need to have the gene for Celiacs Disease (CHECK!); and 3) Something needs to trigger the disease in you. Could that trigger have been set off when Kyle had that bad virus, which led to a whole winter season of diarrhea when he was only 2 and a half years old? Kyle turned 5 in June, and if that is indeed when he developed Celiacs Disease, mathematically it’s taken us half his lifetime to pinpoint what is wrong with our child’s development. And we were one of the lucky ones! Some people spend decades trying to track down what exactly is causing them to feel so lousy.
As of this exact moment in time, the reality is this: My 5 year old son, Kyle, has two primary diagnoses. The first is an educational diagnosis of Autism, and the second is a medical diagnosis of Celiacs Disease. Given our reality, and all of the experiences that have led us to that reality, my theory is this: I believe that Kyle’s early onset of Celiacs Disease, and our delay in accurately diagnosing it and treating it with a gluten free diet, may have resulted in a malnourished toddler exhibiting signs of a developmental delay and early Autism. My wish for Kyle is to absolutely get his development on track through school services and a gluten free diet. I want my son to thrive, succeed, and be as happy and healthy as any parent would want for their child. My wish for other children is for everyone to be screened for Celiacs Disease, initially at age 3 and then regularly there after to monitor development. Adults who develop Celiacs Disease are already developed. They have the understanding to voice any illnesses and to seek help. Kids, especially young kids, don’t know life any differently. They need our HELP, and that starts with raising awareness and making screenings more routine for young children.