The Special Needs Journey
September 17, 2013
I thought I had done everything right. I had opted out of a sonogram, ate organic food, used organic products, and exercised while carrying my son, River. He was born naturally, without any complications, weighed nearly 9 pounds, and we chose not to vaccinate. He was a happy baby, the epitome of health, developing normally, in the 90th percentile for growth, and was never ill. He interacted well with everyone, had great eye contact, played with toys, smiled, laughed, pointed at items in books, loved to dance, made animal sounds on request and babbled like crazy. He only used a few recognizable words after he turned a year old, but there was no indication that anything was wrong. He was very physically active so we were told that he was focusing on his physical development and language would just come a little later.
Between 15 to 18 months, he still wasn't talking much. The babbling continued, but never really turned into words. We also started seeing some odd behaviors. One night, he screamed in terror when I put him in the bathtub; an activity he usually loved. I immediately whisked him out, thinking the water was too hot. It wasn't. From that day forward, bath time became a struggle. I was puzzled. Other issues included crying inconsolably when going into a grocery store or running off whenever we went somewhere. But, nothing really seemed wrong. He was imitating behavior, playing catch and still beaming his bright eyes and adorable smile at everyone.
Our daughter was born when River was 25 months old. He became a different child after she arrived. He screamed in terror when she cried, became hooked on PBJ sandwiches, and threw tantrums daily. We started distancing ourselves from society. Play dates, birthday parties, restaurants, and all public places and events were avoided because River couldn't handle the outing, and we couldn't control or explain his behavior. Instead of playing on playground equipment, he would run off or just walk around it in a repetitive loop. We began taking him to baseball fields where we could close all the gates...and he could just run or walk the perimeter without escaping. He reminded me of an animal at the zoo, pacing the fence line.
During this time, I had a horrible dream that my husband, River and I were sitting on some boulders at the edge of a clear mountain lake. Below the surface, there were large boulders forming a hole that got darker as it got deeper. River was sitting on a boulder beside us. Suddenly, he scooted off and fell in. I watched in horror as he quickly plummeted into the abyss below. There was no way that we could save him. It was such a disgusting and helpless feeling. Looking back, it was extremely symbolic of what was happening. He was slipping away from us.
We enrolled River in a private preschool program, hoping that would help with some of his issues. He wasn't like the other kids. He only used one word at a time to communicate and his rigid behaviors became a challenge for the staff. Music was the only thing that helped him through the day. The program director suggested that we get him evaluated, so the state-based Early Intervention program became involved. He qualified for therapy services due to global developmental delays. Having a psychology degree, I suspected what we were dealing with. Family and friends wouldn't accept it without a formal diagnosis, but my grieving process had begun. I did everything right! How could my son have autism?
At 3 years old, River was transitioned into a special needs pre-K at the public elementary school. He cried a lot, struggled with transitions, and didn't participate much, preferring to just walk repetitive loops around the perimeter of the classroom. In addition, he was missing a lot of school days from being ill. At home, he no longer played with toys, couldn't catch a ball, wouldn't point, interact or even smile much. His life began to revolve around the iPad, which was how he was learning. He knew his ABC’s and could count to 20. He knew shapes, colors, numbers, uppercase and lowercase letters. We were told how smart he was, but he just couldn't apply his knowledge.
River received his official diagnosis the summer of 2012, at the age of 4: Autism Spectrum Disorder. I wasn't surprised. My bookshelf had already been filled with books about autism, sensory processing disorders and home therapy ideas. I had joined multiple online support groups and searched for avenues of support in my local community. This is how I came upon TACA's Georgia Chapter. I attended my first Real Help Now Conference in the fall and was blown away by the medical research that was going on. I knew science...and though some of the information was above my head, it made sense. I was surprised to find that a biomedical doctor had an office 10 minutes from my home. Still, I wasn't ready to take that expensive leap.
River's second year in the special needs Pre-K was worse than the first. Day after day, I'd check River's backpack for his daily report with hopeful anticipation. And, day after day, I became more and more depressed at having to see a status of "Rough Day." I felt like I was the one failing. Between school and private therapies, we were getting nowhere. I felt like it was a waste of everyone's time. River still wasn't putting two words together to communicate, couldn't focus on tasks, frequently flapped his hand in front of his face, and was sensitive to all kinds of sensory stimuli. He eloped, fought and screamed, wasn't potty trained, climbed furniture and was becoming destructive (destroying his classroom and our home). His bedroom, which we had painstakingly put together before he was born, had become a war zone. He tore clothes off of their hangers, breaking the plastic hangers in the process. He shredded the cute little animal wallpaper strip that I loved. He broke the shades on his window. A large hole gaped in the wall from him repeatedly banging the door handle into it. He even tore one side of his crib completely off of its metal bolts. He was like an angry caged animal. Several OCD symptoms also began to manifest, such as checking walls for outlets, hoarding and sorting piles of toys, randomly swatting people who came near, needing to have his food a certain way and needing to have all doors open and all lights on. I cried the day his teacher called to tell me that several administrative staff had to come into the classroom to help them calm and contain him because he had been screaming and slamming himself into a bookshelf. This was the first time he had resorted to self-injury.
By Christmas 2012, River had pretty much stopped eating. If we offered him anything, he would run away in a screaming tantrum. If he did try something, it ended up on the floor...and a screaming tantrum would ensue. He was losing weight and looking sickly. By January, he was only eating hamburger buns, goldfish crackers, and Welch's Fruit Snacks. I could not believe that this is what I was sending him to school with. This wasn't natural and I knew it had to stop. I was getting angry. My sweet little boy was in there somewhere and I was determined to get him back. I was ready to take the biomedical leap.
We started our "recovery" journey in February 2013 by going gluten-free and scheduling an appointment with the nearby biomedical doctor. Things got worse before they got better. River was NOT happy about the new diet. It was very difficult for his teachers at school, but we all fought through the transition. I will never forget the day that he got off the bus and actually looked at me. Prior to this, I always had to help him off the bus because his eyes were glazed over as he looked off into the horizon. It was day 14 of the gluten-free diet and my son was "there." That week, he said "bye-bye" to his bus driver, and said "thank you" to his bus aide, UNPROMPTED.
We had our first biomedical appointment that same week. I went in with hope, having seen some changes already. We ran multiple tests which yielded several food allergies, a compromised immune system, yeast overgrowth and severe vitamin/mineral imbalances. The autism behavior books on my shelf began to be replaced by books on internal healing, supplements, special diets, and gluten-free cook books. We continued with the diet, removed allergens, limited sugar, and began to avoid dairy, which cleared up his eczema and keratosis pilaris. River has been sick only a couple of times since then, each illness being very mild and short-lived.
River has just started Kindergarten in a self-contained autism class. He is sitting, attending and participating in activities. He is interacting with peers, and having very little problem with transitions. He is talking in short sentences (mix of scripted and spontaneous), answering yes/no questions, playing with his sister, is able to catch a ball again and eating a more varied diet. He can tell you his name when asked, he no longer runs off when we go somewhere, is actually playing on the playground equipment, and is able to go grocery shopping without getting over-stimulated. Most importantly, he is attentive in all of his therapies...so that he is getting the most out of them.
River went from an ATEC score of 130 in January, to a score of 97 in May, and a 62 in July. The turnaround in just six months has been amazing. We still have a ways to go but, piece by piece, we are putting his autism puzzle together. We have recently found a homozygous MTHFR mutation and a hereditary disorder known as Pyroluria (KPU), which has helped us to supplement his body correctly. We are restoring his health and optimizing his function.
Our journey to recovery has not been easy, or cheap, but it has been worth it. As parents of an autistic child, we have neglected our marriage, neglected our health, our home, our families, our friends, and even our kids. We still have gluten infractions here and there, and we suffer the consequences. We are not a perfect family, but we are a family with love, strength, and hope...hope that every little thing we do now will aid in a better future for all of us. Ultimately, we just feel a sense of accomplishment every single night for having survived another day.
I came across this saying at some point during our journey and am unable to give credit to anyone, but it used to be a favorite saying of mine: "The special needs journey feels like standing on a line between giving up and seeing how much more we can take." This is what autism used to feel like in our family, but we are walking further and further away from that line. We are experiencing recovery. Where there is hope, there is possibility. When there is possibility, there is no giving up.