I had forgotten what routine doctor appointments entailed, we had not been for anything but sick visits and specialty appointments the last few months. This routine check up with our developmental pediatrician happens twice per year and we had not been in eight months. If anything, I was excited about this impending visit- the waiting room was well-set up for busy two year olds and our nice doctor was flexible and the last visit took place in the waiting room where Amos was happiest at the train table. Only one patient scheduled per hour, I had never seen anyone waiting. And so, we arrived a few minutes early after traveling halfway across the state and both of us were happy to see the friendly doctor. In my mind, it was a chance to brag on Amos' progress and recount results of his latest assessments and evaluations since our last appointment.
The appointment commenced and went on more as a meeting and less as an examination of Amos. I have grown used to this type of appointment which is really more useful for the parent who has been jotting down questions since the last meeting. I have them neatly typed into my phone so I can make sure they are checked off. The questions are intense, loaded with smaller unanswered questions and hopes that no one knows, though I continue to ask and try to ensure no stone is left unturned. We talked about the complexities of brain development, particularly delayed myelination and even watched a video of two brains progressing, illustrating the brain's ability to develop through age thirteen. All I could think was, we have eleven more years of wondering?
Words like apraxia, dyspraxia, dysarthria are thrown around like ping pong balls, each of us competing for the next question, testing one another's knowledge. At least it feels like this to me, a quiz bowl of sorts though I am reminded it is I who will pay the $275 at the end of the hour and I get back on track. Is it worthwhile to travel to Connecticut where an oral motor expert will weigh in for 2 hours, $750 her fee? No firm answer but another person for me to bounce the idea off of, still struck by the fact that this is my rodeo and I alone must use my best judgement to make the decisions. Another MRI? Yes, but in at least another year, maybe two. I should call Johns Hopkins to be sure, measurement of myelination is in millimeters and it may be too soon to see measurable change. A CAT Scan to look at brain's capacity for language development? He's not heard of this. I realize that my parent network developed through writing offers the latest research and the best methods and experts in the field of speech pathology, not to mention our own therapists who are incredibly well-schooled. Finally, I ask the question that has been in my mind since we first did genetic testing two years ago. Should we apply for Medicaid?
The last few months I have asked some very hard questions. The kind of questions that are rooted in such emotions that the people who are asked would likely never divulge the truths without my valiant and forthright seeking, baring my naked soul and whole heart. With this final question, he paused and watched the mother sitting beside him. I like to think he noticed her nervous smile, downcast eyes, clenching thumbs, a self on the verge of tears. His jovial manner was a natural icebreaker to my self, anxious and hesitant, a guarded question that would unlock a Pandora's Box. "I would", he said as he explained it would take months and that if we were denied, we would likely hit the appeal process after his third birthday and then we would have an even better chance. As much as I hate not knowing, nor do I like being guaranteed for something that would be so helpful yet something I grossly do not want, yet I have no choice.
My husband, a successful attorney, is a partner in a small firm and we buy our own health insurance. Our choices for insurance are the same for anyone else in the state of North Carolina and yet, there is no policy available to buy that offers therapy services based on need. All BCBS plans offer thirty speech visits and thirty combined occupational and/or physical therapy visits. No exceptions. No appeals. No additional coverage, like dental or eyes. By late Spring, we should be out of private services. At $400 an hour, 4-6 times per week, it is not a possibility for our family of six even if I were to go back to work. The Early Intervention program bills our insurance company as well and then we pay based on ability once the thirty limit is hit and can continue at a cost of $600 per month. We will do that and even it will not be easy. We are left though, with the option of Medicaid. I wish we could offer to buy it for Amos but it's only available for those who can't afford it or desperately need it. I sure there are millions of people like us that fall in the cracks of maybe not needy enough in either area, though nor do they have $150,000 to devote for their Amos each year.
We will apply for Medicaid. Since this is not an option for us, we shall try to enter the back door. Specifically, we will apply for CAP-C and Innovations, both programs that entitle you for Medicaid. We will beg to take advantage of the system that I have scoffed. Perhaps I'm dismayed that I'm becoming a participant. Do I feel like society is responsible for the care of Amos? No, I don't but I am at a loss of what to do to make sure that his brain mirrors the brain on the video screen, slow and steadily developing. I will beg and plead his case so that we can join a club we have worked our whole lives to avoid. Begrudgingly, I am hopeful it may work. I will not have to spend hours on the phone with our insurance company, explaining and gathering information and doctors' letters. The dissemination of information that uses up priceless time in the development of a little boy's brain, time that is ticking by and at some point, the clock will stop. For my precious son, I shall take the plunge.