March 5, 2014
Colter’s autism is never a subject that I’ve shied away from. I’ve always felt that the more open we are about it, the more people we can educate and maybe even help. So, it’s been a priority of mine to write about it, and why we feel it’s ok to take our sailboat journey with Colter.
We began to notice Colter getting really sick around 15 months. He got dark circles under his eyes and stopped making eye contact altogether. He stopped speaking, as well. He was saying “momma” and “dada”, and at 15 months, he went completely mute. In the autism community, this is called regression. He began chewing on everything, especially rocks. He would line up his toys and would spin in circles for long periods of time. He was also a “runner”. He would take off in parking lots and was almost hit by cars several times. He would watch hours and hours of TV. If we turned it off, he would have 30 minute melt downs. Transitions were a nightmare. Any time we had to go somewhere, or take him away from something he was doing, he would self destruct. He would also stare off into space for long periods of time. A poignant memory for me was the day he was diagnosed. I was sobbing in the doctor’s office and he didn’t even notice. He was completely oblivious to everything going on around him. He was in a haze. That was the beginning of our journey with autism.
I know this sounds funny, but we’ve been very blessed from day one in regards to Colter’s autism. First, Colter was diagnosed at 2 (December of 2011), this is early considering the average age for diagnosis in Arizona is 5 years and 7 months. Second, he has always had a team of highly educated and experienced therapists (occupational/speech therapists and habilitators) and pioneering ground breaking DAN! (Defeat Autism Now) doctors. Third, I’ve been fortunate to have a husband that is hard working and could financially pay for Colter’s VERY expensive diagnosis. To be frank it has cost us tens of thousands of dollars a year.
When Matt came to me with the idea of living aboard and sailing the world, my biggest concern was Colter. Not only did he have medial issues i.e. vitamin and mineral deficiencies, food allergies, and asthma, but he had behavioral needs pertaining to speech and hyper-activity. Colter did not speak until he was almost 3 1/2 and at the time he also suffered from hyperactivity and stimming behaviors. He would also not have easy access to his doctors and therapists living aboard. For these reasons, I did not think it was an option. I would not have Colter’s progress hindered. After months of Matt and I discussing it further, we decided we would only do the trip if we felt Colter was ready. So we gave ourselves two years.
I spent the next two years eating, sleeping and breathing autism. It was the first thing on my mind when I woke up every morning and I went to bed crying about it every night. I read everything I could get my hands on and tried every treatment I came across (hyperbaric oxygen therapy, glutathione injections, food allergy panels, chelation, and more) . I can honestly say that every single treatment we tried was successful in varying degrees. I took classes on autism. I also maxxed out our state aid for Colter’s behavioral therapies. I figured once I got him healthy, I would then catch him up in speech and occupational therapy. Colter attended 2 years of special needs preschool, received 40 hours per week of habilitation, 1 hour per week of speech therapy and 2 hours per week of occupational therapy.
Right before we put our offer in on Wanderbird (February 2014), I attended Colter’s parent teacher conference. His teacher informed me he was ready for a typical preschool with typical piers! My heart was so happy. Our family had worked so hard to get him to this place. He had worked so hard. The blood draws with him screaming, the stimming, the repetitive behaviors, the 30 minute tantrums, the hours of therapy where I felt we’d accomplished nothing…we persevered and it was all worth it. Colter will begin his first year of preschool in a typical classroom in August 2014. We are ecstatic. We will use the next 7 months to further Colter’s progress. I know our journey with autism is not over, but we’ve made tremendous progress. We truly feel that Colter will thrive onboard s/v YOLO.
FYI Autism Awareness Month is April!
I am well aware that the autism community is diverse. There are differing opinions on just about EVERYTHING that pertains to autism. I also want to point out that what has worked for Colter may not work for someone else.