Preparing for Pittsburgh was more emotional than I anticipated. Not the routine gathering and packing of things, but sifting through medical reports to provide background on Jasper's experience of coming into this world. Early on, I assembled a binder divided into sections - Children's Hospital, University of Washington Medical Center, Boyer Children's Clinic, along with a dozen others - for collecting the medical and therapy reports that I knew would come in time. Jasper is nearly two years old. His baby book remains incomplete, lines left blank for milestones he did not reach by his first year, empty squares where photos should be. Instead I prioritize this medical book, rearranging, expanding, updating. Every time I need to consult the book, it is emotional. Gathering birth reports is particularly difficult. Remembering, reliving. Reading about my newborn son in cold medical jargon is a harsh reminder of how difficult our beginning was.
My son is vision impaired. Learning to say those words was hard. At birth, Jasper suffered bilateral occipital strokes, the right greater than the left. When he was nine days old, before being discharged from Seattle Children's Hospital, I was told he had cortical blindness. This news was immediately followed with ...and glasses cannot correct his impairment, because the injury originates in the brain, not in the eye itself. In short, he was blind and nothing could be done about it. A few days later, I was allowed to take Jasper home.
Last summer, prior to Jasper's strabismus surgery to straighten his eyes, I contacted Dr Christine Roman-Lantzy. As far as I could tell from my research, she was the expert on cortical visual impairment, or CVI. Dr Roman literally wrote the book on therapy for CVI, which is the leading cause of vision impairment and affects an increasing number of kids. I emailed Dr Roman late one night after Jasper was in bed. I habitually used this time to contact experts in stroke recovery, neurology, always searching for our perfect expert. Jasper's surgery was at the end of June. Dr Roman replied to my email a month later, asking if we could talk by phone. In our twenty minute conversation, I learned more about my son than I ever had from any of his doctors or therapists. I'm told it will be years before I really know what he sees. Dr Roman replied, I can tell you right now what he sees. The next day I contacted her assistant to make an appointment. Jasper's summer school break was coming up. I assumed we would spend some of August making a trip to Pittsburgh. I should not have been shocked to learn her next available appointment wasn't until 2013, in early January. We would have to wait a good six months to see Dr Roman.
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Getting up at 4:30 in the morning for our 7 a.m. flight to Pittsburgh was harder than I thought it would be. And made worse by Jasper hijacking my plan to quietly transfer him, sleeping, from cozy warm bed to car seat. He woke up ten minutes after I did, crying, before I had a chance to get dressed. Several minutes of crying, screaming, I still could not calm him down, and again wondered, is this worth it? Is it worth subjecting my child to additional stress in my quest for expert therapy? It was hard to answer that question at the time.
Travel was smooth, Jasper was a trooper through it all, as usual. Everyone we encountered, everyone who helped us on our way, was as nice as they could possibly be. With Jasper, it is as if we experience humanity at its finest. People helping each other along their peculiar path, we should be like that all the time.
Pittsburgh was cold with snow on the ground. Old snow that has been pushed aside, not the kind you get excited about. By evening, we had settled into the hotel room that would be home for the next two nights. Because of the three hour time difference from Seattle, I worried that Jasper would not go to bed early enough. He finally dozed off at ten thirty - later than I would have liked. I laid awake for most of the night, calculating how much sleep he would get, using different wake up times as variables. Our appointment was at nine a.m. Fatigue affects vision for children with CVI. A tired Jasper would not be able to use his vision at its optimum. But there was nothing I could do. Ten thirty it was, roughly nine and a half hours' sleep.
I knew from a friend in Pennsylvania that Dr Roman would be wearing black, so that her clothes do not distract the child she is working with. We sat in the waiting room, along with a grandmother and mother of twin girls, to me they looked small and absolutely perfect. One of the twins had a treach. The grandmother complimented me on what a cute boy Jasper is, she asked how much he weighed at birth. Six pounds, six ounces, I replied. I wanted to add, We had a hard beginning, too. When an older woman dressed completely in black passed through the waiting area, I knew it was Dr Roman. She smiled and ushered the twin girls through, then motioned for us to follow.
I knew she would begin assessing Jasper from the moment she first saw him. How does he use his vision to maneuver through space? What attracts his visual attention? Is he staring at the morning sunlight streaming in through the window? I could only guess at her observations.
Dr Roman was very positive about Jasper, she complimented me for doing a phenomenal job. She presented him with different objects in a variety of ways and watched how he responded, or did not respond. The sheer will of a mother's heart and mind was not always enough to aid Jasper in his tasks. Dr Roman explained the difference between dorsal and ventral visual streams. Dorsal is our peripheral vision, less precise. Jasper has mastered dorsal vision and relies heavily on it. Often, this results in Jasper's sidelong glances that other mothers comment on, flattered, as if my young handsome son was flirting with them. He isn't flirting, he's vision impaired. It is critical that Jasper learns to use his ventral stream, or central vision. He needs to learn that using central vision will get him more. She estimates his visual range at five to six feet. She gives us ideas how to expand that range, how to help him learn to visually make sense of the world beyond six feet. Characteristic of CVI, she noted Jasper's preference for familiar objects and toys. Typical kids want new things, new toys; kids with CVI want what is familiar to them, they do not want the new, she told us. This was Jasper.
Earlier in our appointment, Dr Roman's husband, a neonatologist, had joined us. He was an especially pleasant, warm man who I liked immediately. He watched as Jasper moved about the office, easily maneuvering a new environment. Dr Lantzy commented, He looks great! If I didn't know his history, I would think he was a regular kid. Later, when Dr Roman's husband was not present, she cautioned me against his comment - appearing to be a healthy little boy, Jasper's issues could easily be overlooked, he might not get the proper attention he needs. I struggle with this, the grey area Jasper and I inhabit. Until now, no one had echoed this back to me. No one else "got it" in quite the same way.
Dr Roman described the CVI Range - a tool she developed for evaluating CVI's severity. I am familiar with the CVI Range from my own studies, and from Dr Roman's book. She directed her explanation to Jasper's father, who is less knowledgeable overall when it comes to Jasper's therapy, and especially when it comes to CVI. This is ubiquitous among parents of special needs kids, the discrepancy in knowledge and information between the parent who manages care, and the parent who is less involved. Parents can get lost negotiating the darkness of that vast space.
The CVI Range goes from one to ten, and is further divided into thirds, called Phases I, II and III. Phase I is the low vision end. The end of Phase III - ten on the scale - means CVI has resolved, and no longer interferes with vision. At this point, Dr Roman gestured up into the air with her arms, waving them, Resolution is like reaching...Wonderland. Dr Roman has worked with hundreds of kids with CVI since the seventies. In one of our phone conversations, she told me that in that time, CVI had resolved for a handful of them. Certain therapists had given me the impression that CVI could resolve on its own, as if it were a common phenomenon. In the end, Dr Roman conservatively put Jasper in the middle of the Range, the high end of Phase II. She emphasized that early intervention is a requirement for improvement. She predicts Jasper can achieve Phase III in about eight months.
Would Jasper be closer to Wonderland if he had worked with a teacher of the visually impaired, instead of a vision educator, in the critical period of his first year of life? Dr Roman assured me that Jasper is capable of a lot. Does that mean he is capable of reaching Wonderland?
We will return to Pittsburgh in October, when the landscape will be awash in the kind of brilliant fall colors that Jasper can easily see.
I will do all I can to help Jasper find his way to Wonderland.