When I Found TACA
September 30, 2013
I wasn’t at all surprised when our then 2-year-old son, Eddie, was diagnosed with autism. I had read a lot about autism and knew that Eddie had many red flags, especially the stimming and lack of language. Our concerns had started before he turned one, since he had missed many physical milestones. Physical and developmental therapy had helped quite a bit, but he was still very clumsy and was barely saying any words. My main question to the physician who diagnosed him with autism was, “Should we try the gluten-free diet?” I remember being somewhat surprised, but also very relieved, when she said something to the effect that ‘no studies showed any proof that special diets actually help and lots of families try it, but they find that kids who are already picky eaters find the new limitations to their diet make feeding them even harder.’ That got me off the hook of doing all the work to change his diet, right? The physician recommended traditional occupational and speech therapy for Eddie, but didn’t really address why he still had such poor motor skills despite over one year of physical therapy. We were advised to continue with traditional therapies only, like speech therapy, occupational therapy and physical therapy, and that Eddie’s prospects for future improvements were completely unknown. We left that appointment with very little hope.
So Eddie endured the next several years of three to four therapy appointments every week, plus therapy he received at school. Eddie endured so many appointments: occupational therapy, physical therapy, aqua therapy and social skills groups. He really had made a lot of progress! He was talking so much that, at five years of age, Eddie’s diagnosis was changed to Asperger syndrome. And we were thrilled to see some great improvements in eye contact and conversation skills after he completed the Sensory Learning Program, an intensive 30-day program that stimulates the vestibular, auditory and visual senses. He just had to lay on a bed that moved in a circle, listen to music on headphones and watch a colorful light. I’ll never forget after one of the therapy sessions, when he started fighting with his younger sister, Amanda, in the back seat of the car. I had never seen him fight back before! And she had already been bugging him for years!
But all the appointments were taking their toll not only on him, but on me and Amanda as well. Amanda somewhat enjoyed the time she was able to spend with me in the therapy waiting rooms, but for Eddie, therapy was hard work and stressful. I couldn’t focus on what was happening in his therapy sessions while trying to attend to Amanda’s needs, and he still couldn’t function in school without a one-on-one aide even in his special needs kindergarten classroom. Plus Eddie still had major constipation and withholding issues ever since he had several rounds of antibiotics for ear and sinus infections when he was 2 years old. Eddie’s pediatrician, a pediatric gastroenterologist and another developmental pediatrician all continued recommending Miralax for Eddie’s constipation issues, despite my concerns about long term use. And they all continued discouraging any special diets or other biomedical interventions. Then, two years ago, Eddie started having staring spells (absence seizures) within days of receiving the FluMist vaccine. He’s had many EEGs since then and thankfully doesn’t need anti-seizure medication. We haven’t observed any staring spells in over a year.
Hours and hours of internet research finally paid off when I found TACA, because that was when I found some hope. Thanks to TACA, I learned that special diets really do help many people. We began the GFCFSF diet, which we are still trying to implement as much as possible. And thanks to our local TACA volunteers who organize fantastic seminars, I learned more about a great pediatric chiropractor right in our hometown. Eddie’ chiropractic evaluation revealed what we had expected for a long time: a high level of anxiety. Eddie is basically operating in fight or flight mode at all times. According to his chiropractor, the body can’t grow and develop properly if it’s constantly in protection mode. Within just a couple weeks of chiropractic adjustments, Eddie’s toe-walking has completely disappeared! His eye contact and conversation skills have also improved.
So now, at age 7, Eddie is talking about his future as a robot engineer, and about his future wife and several children. But Eddie still has many challenges ahead of him. He attends 2nd grade in a special needs classroom with an aide to assist him because his ability to function in school is severely hampered by his distractibility, his inability to follow directions and his illegible handwriting, despite years of practice and therapy. His social skills are still very poor, so friendships are tough, but he loves being around other kids. He needs a behavior plan with incentives to complete basic tasks that typical kids can easily do. However, he can read at grade level and he is doing well with math and enjoys both math and science.
Eddie enjoys swimming lessons and loves being in the water. He loves Legos, Star Wars, robots, and looking at house plan books while watching HGTV. His smile can light up the room and we just love to hear him laugh at a joke or make his own jokes. Seeing him happy and having good days at school bring us joy!
Thanks to the support of TACA, we found hope and are continuing to help Eddie thrive!