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.
*
* *
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.
