For now, I’m going to skip ahead a little of Jared’s infancy.
It will be necessary to include that portion in my book, but it is safe to say that over the next few years, our world revolved around the quirks and needs of Jared’s schedule.
The needs were excessive; what he ate, the afternoon nap involved changing him into pajamas, his favorite books, and Teddy Ruxpin (a mouth-moving mechanical bear – SO CREEPY!!); afternoons watching Sesame Street, and an every-increasing library of tapes from Disney’s complete set – to the National Geographic 4 video-tape set on dinosaurs. From all this, cross-legged, rocking to and fro, came his form of language. He memorized names for all known dinosaurs, as well as the full dialogue (sound effects included) of every Disney movie. If any of his Disney recitations were interrupted, he would look past you – and start again at the beginning. He was capable of speech, but lacked the desire or ability for pre-verbal or interactive speech.
I had been exposed to children and infants all my life. My fear for my beautiful son lay curled and sleeping deep in my gut. Like the dragons in Jared’s fantasies, it would stay until a behavior or someone would comment on his lack of communication and I could feel the dragon shift and flare, making it hard to swallow or breathe; or I would mumble “he’s just shy.”
In Howard County, in Maryland there is a well established screening process called “Child Find.” However, the child in question needed to be referred by the child’s Pediatrician. With this in mind, Mayer and I made an appointment with Jared’s doctor. Dr. S was, and still is a decent man and a very good doctor – but diagnosing Autism was like “hunting for Sasquatch” back in 1987. ; no one believed in it, and those who did – feared it!
The appointment went fairly well. We verbalized our concerns. In response, to check Jared’s knowledge base, Dr. S. Pulled out a book of dinosaurs. Every neuron in my brain was screaming “Oh Sh*t!!” He pointed at one and Jared replied “Pachycepahalosaurus;” next “Parasauralophus” – “SUPER,” I thought! Next, came “Styracosaurus.” Dr. S. corrected him, “no, that’s a Triceratops.” Jared looked puzzled, repeated his answer so Dr. S. looked at the book, chuckled and conceded that Jared was right, and he concluded, and shared – that I was an anxious first time mother. To add insult to injury, he said Jared was “very intellingent” and thought maybe I should “speak to someone.”
To Mayer’s credit, he was just trying to keep me calm while we considered other options. Also, Jared always held it together long enough for a “well child checkup.” I felt lost and confused. Mayer could tell I was on the edge and tried to calm me, saying we would go to see someone else. At that moment in time, I decided I didn’t want to wait. I wanted someone to feel the same fear that I was feeling. As I strapped Jared into his car seat, his fingers came up before his eyes, playing a symphony accompanied by his atonal “Ahwebegabeyo” song.
In simple terms, I “lost my NUT!!”
I pulled Jared out of his car seat, and headed for the third floor of the Medical Building, with Mayer close behind, trying to get me to slow down. But there was no “slowing me down” at that point. With Jared on my hip, I put him on the counter and demanded to see Dr. S. – now! I think by that point, the entire 3rd floor could hear me.
The secretary said the doctor was in another Exam Room, and I replied he had one minute and then I was going to start opening every door until I (found) him.” By this time the Dragon was in full “hunt mode” and I had no desire to pacify it. Actually, I wanted to feed it and let it take flight.
To quote my grandmother, I “had my FULL IRISH UP!” Finally, Dr. S. appeared. I pointed to Jared, and asked Dr. S. whether he considered a child who stared off into space, and recited the same skits (over and over) to be “normal.” He tried to speak to Jared, and he asked him to stop … without success. He brought back the dinosaur book, but Jared ignored it, as well. For the first time, Dr. S. looked confused and he was genuinely concerned. At this point, I told him all we wanted was a referral to Child Find. I also told him that if Jared’s results showed that he was “normal,” that I would get professional help for my problems. I had to reassure myself that we Moms and Dads are with our children 24/7; while doctor only sees him for 15 minutes, once every 2 months.
As we left, Mayer picked Jared up to hold and to carry him. The sound of “Ahwebegabeyo” began to follow me to the car. We both knew I couldn’t touch him without him feeling my feelings and at times like this, Jared was more comfortable in Mayer’s arms. As Dragons would become a beautiful part of his special world, he couldn’t handle the one inhabiting me. Mayer carried him to his car seat, where he could resume his finger play and humming. I was very concerned how the interchange may have affected him; but he was humming at his fingers and smiling at “the world beyond.”
I sat in the car rocking and crying with my Dragon, both of us knowing that the steps to come would be brutal, but every day was more important than the last.
There would never be a day without Jared’ challenges being and ongoing fight.
There would never be a day of “completely letting go.”
(C) 2016, Sheila P. Max