Last February Juan placed a phone call to a doctor’s office just outside of Chicago. We knew we wanted for this doctor to see Jacob and were told the waitlist would be about a year, so we were encouraged to reach out as soon as possible.
Life last year seems like a blur. At this point last year, we were just months into Jacob’s Autism diagnosis. We were coming off the disappointment of not having ABA therapy covered by our private insurance. We were seeing some gains in some areas of Jacob’s behavior as the result from our doctor in Florida. We weren’t sure that we would even want to see the Chicago-area doctor when the time came to schedule an appointment, but we didn’t want to eliminate or prolong the opportunity. The rollercoaster of special needs parenting was in full force, and Juan and I were on this ride together.
In January 2020 we received a phone call from the Chicago-area doctor’s office and scheduled an appointment for Spring Break. It seemed serendipitous that my husband would schedule the visit during the week where there was no school for myself and our middle child. My husband reluctantly agreed to turn the doctor’s visit into a road trip for our family of four. So we rented a car. Booked 2 AirBnB’s. Booked 2 hotel rooms. And I worked diligently on planning our 6-day Spring Break adventure. We would see 5 states: Texas, Oklahoma, Arkansas, Missouri and Illinois. We would visit museums and city attractions with the kids. We would break up the driving over the course of the week, and even have the chance to see our oldest in college twice. I packed snacks. I packed our bags. I would even take the reign behind the steering wheel because my husband doesn’t like driving long distances. I was ecstatic, but my husband not so much.
Our visit with our new doctor was similar to our first visit with Dr. K in Florida. We spent two hours in her office talking. She observed Jacob interacting with his brother, with us and even attempted to interact with him on several occasions. She asked us questions. She reviewed his medical history. We shared what our treatment plan had been for the last 15 months.
What are the areas you’re most concerned with? Lack of functional speech.
Somebody I recently met smirked at my comment about wanting my youngest to be able to speak. Be careful what you wish for, once he starts talking you’re going to wish he would stop. I think about this comment often. Will it be true? Perhaps. But that doesn’t mean I don’t want him not to talk.
We left our new doctor’s office with a similar, but different enough game plan. We would continue the use of some of our supplements, but add some additional ones to the rotation. We discussed things like Apraxia, PROMPT therapy, methylation pathway and research written by Dr. Jill James from the University of Arkansas. We agreed on some changes to his dietary restrictions and we’re adding somethings to his bedtime routine.
As we drove to Chicago, there was a period of about two hours that I proclaimed “Road Trip Heaven”. The boys were fast asleep in their carseats, the flat highway was clear of traffic and the weather was perfect enough to enjoy the views of the Illinois farmlands. My husband looked at me with curious eyes — “I can’t believe we’re driving to Chicago to see a doctor. Do you think we’re dumb to do this?” I shrugged my shoulders – “Maybe.” In the almost 1.5 years of committing to biomedical feedback as a treatment to our son’s Autism diagnosis I know this to be true: It hasn’t hurt him. Nothing that we’ve done has proven to decrease his functioning. Nothing that we’ve done has proven to show regression. We aren’t going backwards, but it’s hard to tell if we’re going forward sometimes. And if we are, are we going forward enough? And without skipping a beat, the same husband with the twinge of doubt in his voice said, “I’d rather do everything we can and hope for the best, than to regret not doing anything at all. At least we can say we tried.” I smiled in agreement.
I wish I had the words to tell my husband in that moment that we are doing more than just “trying”. We’re modeling perseverance and hope for the little eyes watching our every move. We’re embodying the idea that family helps when someone needs something. We’re displaying resilience, grit, optimism and growth mindset. Our Spring Break road trip was an opportunity for us to experience something new as a family. The Autism diagnosis has robbed us of so many typical experiences so far, and I wasn’t willing to let Autism win again. How I wish our Spring Break plans didn’t need to be about seeing a doctor in a different state, but this is our reality. This is our life.
Only time will tell if our newest treatment plan will yield favorable results, so I’ll keep you posted. I’m excited to see how much Jacob progresses in the next year.
Signed with love, Kat.