Our Autism Story: A Father Recounts his Family’s Journey to Health
My name is Mike Thomas. My wife is Tessa. We have three children; two boys, Caylor born in 1999, Corbin born in 2002, and our daughter Kiana, born in 2005. Our autism story is similar to many others, and yet each of our stories are unique in their own ways.
Caylor was born on September 20, 1999. He was 6 weeks premature, with jaundice, and spent 7 days in the hospital before being sent home. Despite that, he seemed OK. He was a bit of a lethargic nurser, and did not sleep very well for the first 9 months. The doctors discovered that he was anemic, and there was a brief scare of Thalassemia, but that turned out to be a false alarm. After treating his anemia, his sleeping and eating improved. We were new parents, and he seemed to meet most of his milestones, so we didn’t realize that anything was wrong. Looking back, we now know there was.
Corbin was born on May 26th 2002. He was almost full term, but he was breach, and Tessa had to have an emergency c-section. Due to Caylor’s prematurity, Tessa was on some medication in order to help prevent her from going into preterm labor. Despite that, Corbin seemed fine. He was a happy boy. He slept OK, and was a strong nurser. He met all of his milestones crawling, walking, and developing language, and playing with his big brother. It is heartbreaking to go back and look at photos and videos of him from those days.
Then, he had a negative reaction to his 2 month well visit vaccinations. He cried non-stop for 8 hours after them, which was alarming, because he wasn’t a crier. He was our “tough guy” kid. As young parents, we trusted the doctor when he said that it’s not that unusual, and that everything would be fine. And it did seem fine. He continued developing fairly normally after that. But, looking back, we should have recognized that as a warning.
For his 18 month visit at the doctor, he was sick, so his appointment got slightly delayed. After bringing him in, he received his 18 month vaccinations, and his health changed dramatically for the worse. Almost immediately after we traveled to my mother and stepfather’s house in North Carolina for Christmas. We were joined by my sister and her entire family. Everyone recognized that something was wrong. Corbin had lost all the words that he had learned up until then. He would no longer make eye contact, and would not play with his brother or cousins. His eating habits changed. He stayed up all night long, screaming, and making noises. And he began having explosive, mucus filled diarrhea. That was the beginning of many years of chaos.
Sometimes in life, you meet people so amazing, that you just know that they can change the world. It didn’t take long before I realized I was married to one of those people. Many autism warrior moms fit into that category, and Tessa is definitely one of them. I believe that these mothers should be awarded some sort of presidential medal of honor. It’s miraculous what they do for their children, and they are an inspiration to everyone around them, helping to make the world a better place. I am so blessed to be married to Tessa. There is no way I could have done any of the stuff we’ve been able to do without her.
Immediately upon returning from our North Carolina trip, Tessa began researching. Of course the internet was still a baby then, so it was much more difficult. However, it did not take her long to start throwing around the word Autism. We looked into getting him diagnosed by our local regional center, but they informed us that the wait times for diagnosis were around six months. That was unacceptable to Tessa. She found a hospital that could do it instead; Oakland Children’s. By the time Corbin was 20 month’s, less than 2 months after his 18 month vaccinations, Corbin had a diagnosis of full blown severe autism.
I’ll never forget diagnosis day….the worst day of our lives. We had a vacation that had been scheduled for several months. A couple days in New Orleans at the Jazz Festival, followed by a week long Caribbean cruise. The day before we left, we got the official news from Oakland Children’s. We reluctantly decided to continue with our plans. The boys went to grandma’s house, and we left for our trip. Words cannot describe how solemn that moment was. It was like our entire lives were being yanked away from us, and were about to be replaced with new lives. Ironically, while on the cruise, we met an older couple with a severely autistic 20 year old. It was a small but hopeful glimpse into our future.
Upon returning home, and with a fresh diagnosis, we made a plan. That plan was to get out of Dodge. Dodge being our home, and location of our business, Tuolumne County. Tessa had already begun researching possible treatments prior to receiving the diagnosis, and we knew that Tuolumne county had very little to offer, and Corbin’s needs were overwhelming. Without getting into too much detail, here’s the short list of some of Corbin’s issues: Massive bowel problems, sleep issues, what seemed like metabolism problems (weight gain followed by weight loss in repeated cycles), ocd, verbal and non-verbal stims, tantrums, aggressive behavior, darting, non-verbal, non-responsive, difficulty learning, and extreme pica. I’m sure many have already heard stories about what it is like living under those sorts of circumstances, so I’m not going to go into them. The best word is chaos.
We sold the house that I had built myself. It was supposed to be our dream home. We had only lived in it for 1 year prior to Corbin’s diagnosis. Luckily, since it was during one of the largest real estate bubbles our country has ever seen, and since I had built the house myself, we made $480,000 of profit on the sale of the house. Eventually, all of that money was spent on therapy for Corbin.
We ended up finding ourselves in Elk Grove, Sacramento County. The regional center there was excellent, and Corbin qualified for every therapy there was. So, Corbin, became a full time worker in his own quest for a better life. Having Just turned 2 years old, he was in 40 hours a week of ABA, in addition to OT, physical therapy, speech therapy, and several others, including horseback riding therapy.
And, as Tessa would leave no stone unturned, we looked into medical treatment, because it was so obvious to us that Corbin was experiencing physical symptoms of illness. We found ourselves attending several DAN (Defeat Autism Now) conferences. There we met Dr. Bernard Rimland, Dr. Andrew Wakefield, and several other doctors that were attempting to help these children who were clearly experiencing more than just psychological symptoms. It was very frustrating that the mainstream health care system would not recognize that at the time. We were shunned by many mainstream doctors, for even asking about his symptoms.
During this time, at the suggestion of one of Corbin’s therapists, we had Caylor checked out. And then, more bad news. Caylor was diagnosed with Asperger’s. His symptoms were Tics, Echolalia, sing-songy speech patterns, eye contact problems, attention problems, negative attention seeking, and he was also diagnosed with growth hormone deficiency. At the time of his diagnosis, the doctor’s told us that like Corbin, Caylor would never be able to live or function on his own………stay tuned for the outcome of that.
So, we ended up having two kids needing treatment, and we fully embraced the DAN protocols. It drained most of the funds we generated from the sale of our house. We had several DAN doctors, and tried so many things, that I cannot remember it all. But some of the ones that come to mind include, IV chelation, methyl B-12 shots, low dose naltrexone, yeast protocols and medications, gluten free and then SCD diets, HBOT, biofeedback, zeolite clays, and others. It was a busy, and desperate seeming time. On a side note, one of the doctors for the boys was Dr. Jeff Bradstreet. If you are not familiar with him, and his story, it is worth Googling. I am very suspicious of what happened to him, and his death.
During that time, despite the advice of our doctors against it, we made the decision to have another child. We prayed so much for a baby girl, and God delivered. He gave us our perfect, healthy, (unvaccinated) baby girl…….Kiana…….healthy and smart to this day.
Unfortunately, in regard’s to the boys’ health, we were noticing little progress from the traditional therapies that were being provided by the state. Corbin just wasn’t making any progress. And Caylor, while seeing some improvement medically, was not thriving in the incredibly rigid school district of Elk Grove. So, after 3 years, we made the heart wrenching decision to return home to our beloved Tuolumne County. Our goal….accepting and settling into our life as an autism family. How could we make the best of it, and still provide a fulfilling life for all of us?
Fiji…….no, we didn’t decide to move to Fiji. Fiji is/was a dog. A service dog. She played a huge role in bringing some normalcy to our lives. Her job was to keep Corbin from darting, and if he did, she was to track him. She was also to be his companion. For 13 years she was Corbin’s best friend, she kept him safe, and on two occasions she tracked him when he was lost. The story of how we obtained Fiji is nothing short of a miracle from God. It is way too long to tell here, but let’s just say that through Tessa’s unrelenting persistence, and fierce advocacy for Corbin, we took on the entire state of California, by ourselves, without lawyers, and we were awarded the first ever Autism service dog that was fully funded and paid for, $15,000, by the state of California. Thanks to Tessa, having the right judge, at the right time, and God, that precedent has now been set. R.I.P. Fiji 2023…..Corbin’s best friend and protector.
Fiji was a huge part of our family’s success upon returning to Tuolumne county. The boys were enrolled in their respective school programs, and from that point forward, life began getting better. They continued with DAN protocols, particularly the SCD diet, and the chelation. It’s those two things that I feel provided the most medical benefit for the boys.
Caylor began to thrive in his new environment, and while it was still difficult, and took some additional work and time, he’s never looked back. He’s now what I would consider fully recovered. Not many people in his life even know he was ever diagnosed with anything. He is a graduate of University Nevada Reno, a ski coach for teens who are aspiring to be professional skiers, and a mountain bike coach. He’s an amazing athlete, very intelligent, and somehow has managed to be incredibly relational with people. He also is showing great talent in the field of construction, and hopes to start his own business. So much for living with his parents for the rest of his life.
Corbin’s struggles have been more profound. We do believe that between the diet, and the chelation his bowel problems were healed. His overall health also improved. However, the rest of his struggles remained. But that didn’t stop Tessa.
We’d always been a very outdoorsy couple; biking, hiking, skiing, and kayaking were our favorite activities. It was always my dream to do those things with my kids. With Corbin I was convinced that those things would be impossible. But I decided to try. Having ski raced in college, I figured I could try to start with that. Despite my experience, I failed, and I felt like a failure. I wanted to just give up and curl into a ball in the corner and cry. But while I was pouting, Tessa was looking for alternatives.
And diligent as she is, she found them in Skiing Unlimited, a non-profit working exclusively with disabled clients. Their founder had designed and built his own special equipment that was used in these exact situations. They had a whole team of people working with Corbin, and on the first day, they had him on the chair lift. That day changed my life. I stopped pouting, and realized what was actually possible. They taught me how to use the equipment, and I became a skiing unlimited volunteer for my own son. After 3 years of using the special equipment, we took it off to see if Corbin could ski without it. Would muscle memory kick in? After a few scary moments, it did. Corbin can now ski independently on ski runs up to intermediate, and my dreams of family ski days and vacations were no longer dreams. They are now a reality.
I finally had realized what was possible. Corbin did not need to be completely cured to have a good life. We would find a way to make the best of our new reality, and it was full speed ahead. What else could we teach him? It turned out to be a lot.
Thanks to Corbin’s hard work, our own, especially Tessa’s, persistence, and help from others, Corbin does a lot. He swims, hikes, goes to the gym, mtn. bikes,even from the top of Mammoth Mtn., at over 11,000 feet, rides a scooter, hoverboards all over the house, and even rides a Onewheel, evenon extremely difficult terrain. If you’ve ever seen a Onewheel, you’d get how amazing this is. All this despite not being able to understand complex instruction, effectively tie his shoes, brush his teeth, or wipe himself.
What I’ve recently realized, that I didn’t even consider when first trying to teach him these things, is that he gets an incredible level of occupational and physical therapy from doing these activities. They force him to focus, and he gets great physical feedback from the movement of these activities. He’s more grounded as a result of them. Plus, he’s very physically fit. What’s next……motorcycles……Yup, it’s already started, and he can do it. Dirt only of course.
Overall, while our journey has been so difficult at times, I lean on my favorite verse. Romans 8:28: And we know that all things work together for good to those who love God, to those who are the called according to His purpose.
Life is good. I built a better dream home. We’ve re-invested in our businesses. Kiana is in college in San Diego. We vacation and play together, as a family, regularly. And we look forward to what’s next. I’m sure God will make it good. My hope is that it can involve inspiring and helping other struggling young families. Corbin is an inspiration to so many already, and the reality is, that there is nobody that he has been a bigger inspiration to, than myself. He is my hero.
