When you start out on this path of discovery, be prepared to have your life put under the preverbal microscope. Everyone and I mean everyone will be looking down the eyepiece lens adjusting that “fine tuner knob” to judge every single aspect of your life. How do you live, where do you live, what is your diet like, what do you watch and when? How much physical activity is in place? You’ll be asked about socialization patterns for the adults and children. It will be all of your life, every moment of every day, being accounted for the: “ON AVERAGE…?”.
For me, it has been a dishearting, frustrating, and exhausting three years of paperwork. A few times in total annoyance I would just huff and mutter loudly “I DON’T KNOW!” To which some well-meaning front office staff member would respond “It’s O.K., any questions you have just ask the doctor.”
I had to know my health history all the way back to the great-grandparents, my husband’s medical history, my Ninja’s medical history…even the bits before he was born. I had to remember how many weeks along I was when he was born, his birth weight, length, and what time he was born.
How did they expect me to even remember that?
I have three! THREE! boys. I’m lucky if I get their name and birthday correct. I felt like I was in front of a firing squad and one wrong answer would send me to my grave!! To top it all off, I had to contend with what one specialist thought was important vs. what another did not. The paperwork Q&A was never-ending. Don’t even get me started on the nurse/doctor conversations. It was like being a broken record. I still don’t know why the doctor will walk in and ask the same questions I just had spent a half hour answering on my medical forms. Did they think I lied?
At one point in our process, I seriously started to have second thoughts and doubt! It was the dreaded reality that maybe I was overreacting? Maybe he was just being a boy. Maybe my Ninja doesn’t fit into that perfect little box the school likes to call “normal.” Let’s be honest, our public school system is set up for well-behaved, rule following, overachieving girls. I am not saying that boys can’t be all those things. I’m well acquainted with several bright, well-behaved, little guys. But overall, if you look at it objectively, for whom is the classroom structure modeling more? In my humble opinion, girls.
I remember I was sitting in the Neurologists waiting room filling out what felt like my hundredth medical form and I absolutely dreaded the possibility that I could be chasing my own shadow. At that point in our journey, no one had been able to pinpoint the underlining cause of the symptoms the Physiologist had noted. Each specialist said that “things were a bit off,” but they couldn’t say what or why.
It was the longest year for me. Every new specialist appointment was months out for new patients, and each doctor would end our twenty-minute exam with, “we recommend that you follow up with…”
So, we would follow up with one specialist after another, chasing the “perfect” explanation of what is the cause and how to treat it. We rounded out with a total of seven different physicians and specialists. Our Ninja was examined by his Primary Care Physician, a Physiologist, an Opthomologist, a Neurologist, and a Pediatric Behavioral Specialist. He also was evaluated by an Occupational Therapist (OT), and Physical Therapist (PT).
It was a lot of paperwork, followed by a lot of questions. No words can describe the feelings I had when family, friends, and the school staff wanted answers that I didn’t have, which only added to my self-doubt. Nobody could give me definitive answers. Once we had the OT and PT evaluations, we had direction and a “this is what we can work on” but no firm diagnosis.
My point—because I do have one—is that after three and a half years, we still don’t know how what or why. My Ninja has been described as an enigma. So, for now, we have two “working” diagnoses. One so he can receive the OT and PT he needs. The other so he can qualify for an IEP at school—which required evaluations by two separate Speech Therapist, and another Phycologist.
Our journey started out bleak, the light at the end of the tunnel was not even visible. Now it is a tiny pinprick, but halleluiah! It’s a light! Don’t doubt. Don’t give up. Do whatever you need to do for your Ninja! Even if that involves closet crying and screaming into a pillow—I’ve done both—but don’t you ever let the doubt win! Why? Becuase like my Ninja, your’s is just a brilliant, empathetic, brave, hardworking, loving child, who just wants belong and needs your help to overcome their individual challenges. It’s worth all the paperwork, and it’s priceless when you see that glimmer of light in their eyes!
photo credit: Bruce Guenter