Return to Wonderland

Originally published November 12, 2013

Pittsburgh Zoo

In the weeks leading up to our October appointment with Christine Roman-Lantzy, I debated going. Jasper’s developmental Renaissance, which began in early summer, was still going. Global improvements in communication, speech, feeding, auditory processing, and vision. Another new mom once said to me, “My baby changes so much every day, he’s constantly learning something new!” At the time, Jasper was about a year old, and doing Ok, but the words struck me. Changes so much… every day?? I had no idea what that meant. My experience was different from that of other new moms.

Right now Jasper is doing great things. “It’s like his skull is gone and we have direct access to his brain!” his speech therapist proclaimed. It was as if Jasper was listening and simply doing the next goal we described. Eat or explore a sandwich. Use two word combinations. Add that second consonant onto the word Shut. He did not make us wait long. Goals changed from week to week. If he was doing well, why trek clear across the country with him? There were good reasons for going. Transition to developmental preschool – to the special education public school system – was around the corner. Jasper was little, not yet three, what I thought of as that magical age, the critical period…or the end of it. All good reasons but not the real reasons. I was afraid of not going. Of missing something. Afraid of the anxiety and persistent feeling that no matter how much I do for my child who has cortical visual impairment, it is not enough. That alone was reason to return to Pittsburgh.

Last time was a learning experience. This time we left two days before the appointment, with a one day cushion to settle in and adjust to the three hour time difference. The first morning was pouring rain but by afternoon the sun appeared and warmed things up enough for a visit to the zoo. I am becoming fond of Pittsburgh, which I would not have predicted. It is smaller, without being small, and friendlier than Seattle. It has leading universities, art, culture, water (rivers), good food, hills, and the attractive quality of affordability. And I am comfortable enough there to move beyond my boundaries, which means we rode the bus to the zoo. Something I had guven up in Seattle, riding the bus. Jasper hated the bus, and he hated my singing Wheels On the Bus on the bus, but he settled in for the fifteen minute ride. At the zoo we practiced looking at animals, treated ourselves to popcorn and fries, walked a lot, and saw few other visitors.

Not being a skilled bus rider, the next morning we missed the bus to West Penn Hospital by several blocks. We walked part way, then hopped the original bus as our paths eventually intersected, and arrived half an hour early for our appointment.

Since our first meeting last January, I have had regular correspondence with Dr Roman, and have seen her on a few occasions. She greeted us like old friends when we saw her in the lobby and we walked to the clinic together. Again, her observation would begin immediately, instinctively.

Right away, she complimented Jasper’s visually guided reach, impressed. I filled her in on his other progress, seemingly coming from out of nowhere – except for months and months of unending therapy appointments and sessions, school, parent education classes, and parental effort, from the moment I first heard the words infant stroke and cortical visual impairment. Again, I watched Jasper attempt the given tasks, mentally willing him along. He found some Cheerio snacks on the complex patterned fabric, but not all of them. He ignored the bright red light in his peripheral vision as he examined a toy up close. He missed multicolored toys perched in bright sunlight on the window sill in the sparse hallway, placed there especially for him to find. Jasper had no difficulty honing in on his yellow Play Doh, preferred color, or a small orange ball. Jasper was tired, in an unfamiliar environment, and in a different time zone. He had done his best.

Two hours is long for an appointment and still it is not enough time. Questions are prioritized. I listen and take careful notes on what to do next. Dr Roman scored Jasper as late Phase II, with a toe in early Phase III. Inside, my heartbeat quickened. Knowing Jasper’s challenges, namely Complexity, it would have been shocking if he had been solidly in Phase III.

She is impressed that Jasper has reached Phase III. She reminds me that, on average, it takes kids 3.7 years to get there. She reminds me that this is different from many children with CVI that she sees.

I briefly wonder about Wonderland.

Preschool transition happens in February, and Dr Roman made suggestions. Jasper needs strong role models, typical peers. He will always need lots of vision support. Always. Again I mention my anxiety about appropriate vision services, given the difficulty of finding a Teacher of the Visually Impaired who is competent in cortical visual impairment. I know you want…the best, she begins. But probably the best teacher he will ever have is you. In a way, this is not what I want to hear but I take it, given the source.

The appointment concludes and I gather our things, making sure not to leave behind the Play Doh. Dr Roman again compliments my and Jasper’s hard work, and his progress. I still have that feeling that I’m not doing enough… I trail off.

I think you can start to let go of that, she said.

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