Guest Blog By – Laura Sylvester
Our autism journey has been a rocky one. Like most families we have marched forwards and backwards at times. In our quest to help Elliot be the best he could be, we have had to take some seemingly “backward” steps before we could continue “forwards.”
One of those “backward” steps involved my mom. It was tough when I first told my mom that we planned to take Elliot out of public school and home school him. I cautiously explained to her that we planned to take a week long training course to learn a new therapeutic modality that also included how to train others to work with Elliot. Knowing that my mom has always been a huge proponent of formal education, I was a bit worried about her response to this new information. The first thing she said upon hearing my statement was, “Aren’t you worried it’s just one more thing you’re going to try that won’t work?” This statement completely stopped me in my tracks.
Despite the seeming lack of support, her concern was valid. At the time, Elliot was 6 years old and had gone from a diagnosis of mild autism as a toddler with a prognosis of “losing his diagnosis by age 4” to being placed in a severely handicapped kindergarten class after three years of “autism pre-school.” And in my Mom’s defense, we HAD tried a lot of remedies, therapies, and interventions. In four years, Elliot had seen a dozen doctors; he had been on the Gluten-free casein-free soy-free diet, Specific Carbohydrate Diet and Body Ecology Diets ; he had taken vitamins, minerals, probiotics, anti-fungals, anti-virals, detoxifying agents, and homeopathy. Then there was the myriad of one-to-one interventions including: ABA, PRT, Floortime, RDI, SPT, OT, PT and AIT therapies (is it possible there is a missing acronym here?) Even with all these efforts trying to get Elliot to come out of his autism, both my husband and I felt we were losing our boy more and more every day. We knew in our hearts that is was time for a drastic change. My reply to my mom, Elliot’s beloved Nanny, took courage. “Actually NO, because even if this doesn’t work for Elliot, they’re also going to teach me how to love Elliot just the way he is and teach us how to be happy with our lives just as they are.”
At that point, I felt that if I could replace even a little bit of my feeling of responsibility to “fix” Elliot with acceptance of him, it would be a dramatic improvement. So, the decision was made. We spent the money and prepared to learn how to homeschool Elliot. I prepared for our trip by reading all the books that corresponded with this new approach to autism. This new thinking certainly did not deter me from my goal to help Elliot be the “best Elliot” he could be – it simply changed my way of thinking and how we lived. As I read, I began to put into action this new way of thinking about my son.
One day, Elliot and I were at Disneyland riding “It’s a Small World” when our boat stopped in traffic near the end of the ride – definitely far short of the dock where it is supposed to stop. Elliot screamed at top volume, “WE’RE STUCK!!” At that moment I believe every person on the boat whipped around and shot a look at him. I rapid fired a quick look back at ALL of them and then I decided to join Elliot by yelling back with all the Dora the Explorer exuberance I could muster, “ YOU’RE RIGHT! WE ARE STUCK! WHAT ARE WE GONNA DO NOW?!” Lo and behold, everyone on the boat turned back around to face forward, speechless. Elliot and I continued our discussion in a way-too-loud-to-be-appropriate volume and I didn’t feel the least bit self-conscious. In fact, I felt great!
For the first time in Elliot’s life, I had chosen my son over the reactions and judgments of others. AND, where before Elliot would have a negative emotional response to my un-ease, this time he was smoothly going with the flow. In that moment, Elliot seemed happy and I felt a new kind of connection with my son that I will forever cherish. From that moment on, I vowed to never put strangers’ feelings, judgments or comments ahead of my son. I would always put my son first.
A shift in both my thinking and way of being had begun on “It’s a Small World” that day. Rock solid change would then follow when I totally replaced one way of thinking with another. Needless to say, we went to the home school training and we have now been running a home program for Elliot for the past 5 years – Elliot is now 11. I have come to call this journey “our path to acceptance”. Sometimes it has been an uphill battle. We worked hard on ourselves – realizing how to choose happiness and how to balance acceptance with not giving up. And, most importantly, learning how to truly love Elliot just the way he is.
Upon further reflection, it wasn’t until we changed our priorities from trying to teach him to communicate our way (like it was the only way) to focusing our desires on connecting with him in ANY way (mostly HIS way), that he started to come back to us. That’s when we began to have a more meaningful relationship with our son. Most recently however, I realized that the path to acceptance was not the “end all” I thought it would be. Upon reaching the top of the acceptance mountain, there was actually something more waiting for us – JOY! Joy in the uniqueness and awesomeness of our son just the way he is; joy in our different little life; and joy in all the amazing people, experiences and discoveries that Elliot has brought into our lives. Loving what is and what can be became our way of life.