I’ve mentioned Ryan’s ear surgery at nine months as a marker for his first display of Autistic symptoms, mainly due to acute reactions to sound , but his anger and anxiety levels were barely noticeable. He was more likely to be indifferent or quiet. Too quiet. Compared to my youngest daughter who had ADHD, he was the complete opposite- careful, deliberate, and persistent. Yet, over the next year (his second year) I started seeing escalating episodes of anxiety. He would startle, cry, and run when he heard unfamiliar noises. He had crying jags if he fell down, and it took months for him to walk with any confidence. He had a very low pain threshold, screaming and crying with, what I thought, were just regular bumps that other kids would barely notice. I believed Ryan was just exhibiting a more “sensitive” personality than other kids. He fit in with my side of the family, which is heavily populated with high and genius IQs, writers, poets, and musicians. We all have the proverbial innate “high strung” personalities that come from those genes. I figured he would “toughen” up once he gained experience by playing with other children, growing into a more mature toddler. He would naturally get a tougher skin. This scenario might have come true, if not for an event that changed Ryan almost overnight… he came down with a virus.
He caught his first major stomach flu in July (at 16 months old) of 2008, and we were descended into six days and nights of hell on Earth! He vomited, had diarrhea, and burned up with fever continuously, until he lost every bit of his adorable baby fat, and was weak and exhausted. I had never heard of a stomach flu that lasted more than 48 hours, so after repeated phone calls to his pediatrician, I finally got a call back from the doctor who begged me not to bring Ryan into his office (as over half of his practice had this bug), and if Ryan became too dehydrated to take him to the ER, but he seriously doubted the ER could help much, because so many children in the town were sick ,it was jammed full! The wait would be horrible and uncomfortable for Ryan so he advised me to stay home. I was on my own, so following the doctors directions, I gave Ryan Pedia-light and chicken broth in tiny sips, every hour (while he continuously whimpered and got weaker) day after day, but successfully kept him from getting dehydrated. On the seventh day he finally held down a few ounces of broth, but took 3 more days to get an appetite for solid food. I will never forget those 10 days, as I mark that flu as the beginning of Ryan’s regression, and the beginning of his multiple Autistic-like symptoms.
He was never the same, and I watched helplessly as over the next seven months he became possessed by anger, and terror.I couldn’t comfort him, only his pacifier worked (God help me if I couldn’t find one!), and he started resisting me if I picked him up while he was upset. Those first episodes of wriggling out of my arms while crying, marked the beginning of what would become the violent arm flailing, kicking, tortured, screaming incidents that escalated in intensity and frequency. He regressed until he was barely making ten sounds, couldn’t point, couldn’t communicate, and was having up to fifteen “tantrums” a day. Everyone kept telling me he was just going into his “terrible twos”, and he was only having tantrums, but I intuitively knew some of them were not tantrums, because they were something very different from any tantrum I’d ever seen.
I have now come full circle with the back-story, preceding Ryan’s first appointment in New York with the pediatrician that diagnosed him with High Functioning Autism. What I need to mention now, is the raw emotional state I was in at that first appointment. I was feeling a lot of hurt from opinions and accusations by family members and friends, as they gave their take on what was happening with Ryan. I heard them all…” I was too old, therefore too lenient, I was giving in to his manipulation, I was spoiling him, I was too soft, I wasn’t disciplining ( i.e.spanking) him hard enough or often enough, I was feeding him wrong” etc.. By the end of those seven months I was questioning myself (and blaming myself too), but deep down I knew that something was wrong with Ryan, but my message wasn’t getting through to anybody! I couldn’t express to the doctor that day, (since I hadn’t done any research on Autism, so I was unfamiliar with the word meltdown) that not all of Ryan’s tantrums were the same, and that he had different triggers. Sometimes it was transitioning, sometimes it was when he hurt himself, he had different kinds, but I had never fully realized it myself. They all sounded the same. They began with whining , then escalated to screaming and crying. I knew I’d missed my opportunity to express my reservations, when the doctor explained that I had to ignore and isolate Ryan during tantrums, even if it was caused by hurting himself (which happened fairly often), because paying attention to any kind of tantrum would cause them to continually get worse. I did what he, and several other specialist told me to do, and spent the next six months ignoring him as a way to deal with the tantrums, but despite the expert advice they escalated and got worse.
It all came to a head, when I moved to the Florida Keys in October of 2009 (after my oldest son deployed to Iraq), and Ryan’s tantrum’s moved into the realm of physical violence. He had an incident so severe, he broke his dvd player, bent a metal vent with his bare hands, and re-broke my nose trying to get out of the bedroom where he was supposed to stay until his “tantrum” was over. I had had enough! I picked him up, walked out of the bedroom, sat with him in my rocking chair, and started crying. I told him I loved him and we were going to do things differently from now on! He sighed and relaxed into me, exhausted, and fell asleep. What I finally realized, was that Ryan had been reacting to anxiety caused by a sudden change of plans that day, and as the anxiety got worse, so did his so called “tantrum”. Then his anxiety became full blown panic, at which point Ryan wasn’t Ryan anymore, he was a primitive, feral wild animal acting solely on blind instincts. That was not a tantrum. A tantrum is defined as an act of defiance, and manipulation, in which the child is capable of conscious thought. What I had just witnessed was exactly the opposite, a total loss of logical thought, due to horrifying anxiety that escalated to a full blown panic! He felt out of control, floundering, because he didn’t know what came next when the plan changed. What I missed at the beginning of the meltdown was his need for another plan to replace what had changed, but his reaction had been so fast and spiraled out of control so quickly I assumed he was angry. Now I understood, that although Ryan was in his terrible two’s and was having regular tantrums, he was also having “meltdowns”, defined as a loss of logical thought due to the fight or flight reflex governed by the primitive brain! It started as anxiety, and ended in panic. He had needed comfort, not discipline.
We moved forward from that day on. It was the last time I ever ignored my gut instinct, and did what I thought was wrong. I learned to watch for two factors before deciding how to handle an episode. Sometimes, I’m alerted to anxiety by his repeating the same thing over and over. Other times, he will start asking “what if” questions that start to escalate, if I’m not catching on to what he is anxious about his voice will get higher, and louder followed by fidgeting. Other times if he’s suddenly startled or scared, he freezes then takes off running, and goes into full blown meltdown, running with no thought to his safety. If he’s angry, (but can be distracted) then he’s heading for a tantrum, which happens much less frequently as I’ve learned to insist that he not cry for what he wants.
It has been 2 years since that fateful day in the Keys when I took control of Ryan’s meltdowns AND tantrums (for that was the missing key all along, to help with both!), and in that time he learned how to talk, he started school, began playing with other children, and learned how to pretend. He had come a long, long way, but he was still sick all the time, and I just couldn’t shake the feeling that his diagnosis was still “off”. That just like the difference between his meltdowns, and tantrums, there is an underlying issue with his health that is still being missed. An issue that is continuing today, even with his gluten-free diet, that will take more testing, and trial and error before we really get to the root of what has happened to Ryan since that fateful stomach flu.
For now dear friends, I apologize for the length of this post, and hope that it held information that helped with your own child. My next post will address several avenues of new research (DNA, environmental, immunological, diet etc), and the up coming testing Ryan will be going through to answer his medical issues. Until then I bid you peace, and hugs for your children.
Best Regards,
Beth
