One of the boys

Jasper is in gymnastics class with a handful of typical boys his age. That means that he is behind, that he is different. Each week he goes out onto the floor, without me, to his coach and these boys. Watching from a distance is hard, seeing only the differences. The other boys sit in a semicircle around the coach, listening, responding, while Jasper squirms or rolls around on the floor – somewhere outside the semicircle – barely aware of the other boys. Jasper follows when the group moves along, led by the coach. He is last, on his own, as usual, unless the coach holds his hand. The boys follow close behind the coach, forming a neat line, tracing the same path. Somewhere in back is Jasper. Although he is headed in the same direction, he does not follow the same path. As the boys turn a corner at a gymnastics launch board, walking around it, Jasper notices the launch board has an incline. Always attracted to the movement of an incline, hill, and especially downhill, he ventures off and detours up the launchpad, walking, stumbling down, unnoticed by the other boys and coach. Jasper ended up in the same place, with the other boys, but he saw a different way, and that is the path he took. Still following the group, but in his own way. Is this what I am worried about? Is this what keeps me up at night?

Near the end of class, I’ve lost track of Jasper’s group out there on the gymastics floor. Eventually I spot them down in the foam pit, winding down. The other boys are throwing big foam blocks at each other, and especially at the coach, laughing, playing. I search for Jasper among them – is he playing too, laughing, throwing, having fun? That is all any parent really wants for their child – a little acceptance, a little inclusion. To be one of the boys.

 

 

 

 

 

 

 

 


Yoga, continued

It was time to return to yoga. Spontaneously, unplanned, on an empty Sunday morning. All that was on my mind was getting back to myself, some sense of myself – getting healthy, well, and strong again. Yoga, with its emphasis on body and mind. Getting out of the mind through being in one’s body. Breath, acceptance, awareness, connection. Letting go.

I did a lot of yoga during pregnancy. The only time I was off my bike long enough to embrace some other activity. In addition to weekly prenatal class, true to my introverted nature, I practiced yoga one on one with a friend from the artist studio where I worked. Her yoga soundtrack was soon the soundtrack of my pregnancy. The rhythmic, repetitive chants were soothing, predictable and comforting in a time of great change and uncertainty.

Oh my beloved

Kindness of the heart

Breath of life, I bow to you

And I’m coming home

And I’m coming

And I’m coming home

The familiar, nostalgic notes came at the end, at Shavasana. Laying on the floor, staring at the ceiling, my eyes filled with tears. The music had acquired such complex meanings – promise, joy, beauty, sadness, grief, loss. It took me back to the beginning – Your baby is having seizures, we don’t know why. And carried me all the way forward to the present. Why am I crying? Why am I crying?

Ong Namo by Snatam Kaur

Oh, my beloved, Kindness of the heart

Breath of life, I bow to you

And I’m coming home

And I’m coming

And I’m coming home

 

photograph copyright david b williams


An Untold Story

“There is no greater agony than bearing an untold story inside you.”

– Maya Angelou

 

 

 

 

 

 

 


Waving bye bye

school busAt a little over three years old, Jasper has started to wave bye bye. The first time was a few weeks ago, getting off the bus from preschool. Jasper does not say the words “bye bye” but he lifted his right arm at the elbow, and shook his hand slightly. Most children learn to wave bye bye by about a year old. Doing the math, Jasper has been practicing bye bye for over two years.

Jasper’s wave bye bye takes the form of flapping his hand. Keeping his hand loose, he shakes his wrist, as his hand flaps around, up and down. Different than waving a hand with the fingers or rotating the whole hand side to side. Jasper made up hand flapping on his own.

With a heavy heart – great big swallow – Jasper and I wave bye bye as we say farewell to this blog.

I have loved sharing my son with you. Your following, support, kind words, and encouragement mean more than I can say. Every so often I have a random encounter with an acquaintance who comments on Jasper’s progress, on what has been such a challenging experience in ways I did not anticipate. Each time, I smile, swallow, and blink back tears.

Thank you for following Jasper’s story.

Thank you for caring.

Thank you for listening.

 

Bye bye for now.


at the window

at the windowwho are you, little i

(five or six years old)
peering from some high

window at the gold

of november sunset

(and feeling that if day
has to become night

this is a beautiful way)

– ee cummings


What’s the best part about being a single parent? Getting to make all of the decisions. What’s the hardest part about being a single parent? Making all of the decisions by yourself.

I was a single parent before Jasper was born, and ever since. The only issue his father expressed a firm opinion about was whether or not Jasper should be circumcized. Hygiene tugged at me on that one, until watching a video on circumcision at childbirth class. In the midst of the storm that followed Jasper’s arrival, circumcision became a non issue. No one asked about it. With everything Jasper had been through, I could not do that to him.

This past week I have struggled with an issue that I hoped was behind us. Having something of a controlling personality, most days I savor making every decision for Jasper, though he increasingly makes his own decisions. I coordinate the perfect outfit the night before school, shape his curls exactly how I like them (and he promptly musses them up). I sneak chunks of meatball into his bites of spaghetti even though he exclaims, “No MEAT-ball!” as soon as we sit down to eat.

Medical matters are far more significant than getting dressed. Doing my best to remain calm and unemotional through the decision making process, I couldn’t help but look around for someone to ask, What do you think? What should I do? There is no such person. That part has not been recast, the dual role is mine, and mine alone. Most days I can handle it.

Earlier in the week, Jasper had his thirty six month check up. The appointment ran well past the allotted sixty minutes and still it was not enough. Leaving the doctor’s office, I made a mental list of minor issues for follow up. Later that night, my brain recapping the day, the doctor’s word of caution regarding one of my concerns resurfaced. Without a second set of ears – either in the room during the appointment, or ears that listen at the end of a long day – I rely on myself. Fortunately, my brain kicked in, right before bed.

Reaching out has been a struggle my whole life. With Jasper, I recognized early on that this quality would be to my detriment. Parenthood challenges us in the hardest ways, it challenges us where we are weakest. But knowing who to reach out to is hard. Friends with typical kids have a tough time relating. Our reality is unimaginable to them. Friends with special needs kids struggle with their own crises. Family is far away. All of them are busy with kids, jobs, families, spouses. Others are consumed by self imposed busyness.

There must be someone who can reassure me. And I remembered one of Jasper’s practitioners, she was perfect. I immediately emailed her, tapped out a message on the small screen, by the dim light of the phone, hit send, and eagerly awaited an instant reply. Her reply was not instant, but it was not long, and it brought enough relief to afford me a night of sleep uninterrupted by worry.

The next morning, there were phone calls to doctors, reestablishing connections I hoped to not need again. In my mind, I ran through an inventory of friends, calling out each one’s particular strengths, imagining each one’s advice. Anxiety mounted, as no one jumped out, only an amalgamation of opinions. Then the phone rang. Jasper’s pediatrician. All week we had been in touch via email portal, perhaps my least favorite means of communication. She called to talk about Jasper’s issue and to follow up on the yellow sheet – ironically, it included topics such as, Do I feel I have enough support? Certainly not. Does anyone?

We talked for a good forty five minutes. Nothing was solved when we hung up. No decisions made, either about Jasper’s course of treatment or how to recruit extra help. But I felt more relaxed. I breathed more easily. Breathed. We had simply talked. About the emotional, financial, daily, pragmatic struggles of single parenting, and decision making, where there is no clear solution. No one is invested in a child the way a parent is. And when the other parent is not invested, it is hard to make that up. Nothing was solved. All she did was listen, reassure, and validate.

Ever since Jasper came into this world, I have sought the best providers, therapists, doctors, caregivers for him. In a few instances, they found us. We are surrounded by expertise and by people who truly care about my son – the pediatrician who calls me on her day off, the provider in Montana who quickly responds to an urgent email message. These are people I can turn to, that is what they are here for, they dedicate their lives to people like me and my son. It is Ok to ask, What should I do? It is Ok to talk, and know that someone is listening. Probably even taking notes.


Point.

Clapping, waving, pointing. For the longest time these have been descriptors for Jasper’s vision, explaining what it is, and what it is not. Well, he still doesn’t clap, wave, or point. To countless store clerks, though not all of them, We’re still working on bye bye…. I say, smiling and walking away. We have practiced each one – clap, wave, point – in context, for over two years. Practiced. In our failed PEPS group, when Jasper was about a year old, another mom described her highlight of the week, coming home from work, her six month old (or whatever) baby, waved to her, she squealed. Had you been practicing?? I desperately wanted to know. How did she get her baby to do that? And how could I get my own, older baby to do that? And what’s so great about waving bye bye after all?

The first time I spoke with Dr Roman, in July 2012, I described Jasper this same way, He doesn’t clap, wave or point, meaning he does not imitate gestures. Children learn gestures through imitation, Dr Roman replied. In children who are vision impaired, these are either delayed or absent. I ignored the word absent and focused on delayed, which applied to much of Jasper’s development. Absent was too hard to think about yet, it required another level of acceptance that I was not prepared for. By its nature, cortical visual impairment improves slowly, over time, though to what degree for each individual child, is unknown. So acceptance does not happen all at once, but is spread out over years.

What’s so great about pointing? For kids who are nonverbal, pointing is a powerful form of communication. The absence, or delay, of pointing was a huge obstacle in Jasper’s communication, in his preverbal two and half years. And explaining why Jasper could not or did not point (yet) became a huge job on my part. Pointing does not happen until kids are in Phase III on the CVI Range, I rattled off to therapists, mostly speech therapists. Follow that with a description of the CVI Range, its significance, Jasper’s place on the CVI Range, and the hope that one day we would reach Phase III, and by the end it was a thesis.

One night about a month ago, Jasper was laying in bed, looking up at the light above before I turned it off. Raising his arm toward the ceiling, he lightly lifted his middle finger and pointed at the fixture and said, Yellow, one of his favorite colors (and his preferred color as an infant in Phase I on the CVI Range. Yellow still jumps out at him in the world). We were at home, so I was the only witness, and was stunned. Did he really just point to the light?? There was no one to ask for confirmation. I stayed silent, watching and waiting for more.

The point has happened a few times since, usually the incandescent light at bedtime. Today at school, waiting outside the classroom, Jasper looked up at the lights, pointed and said, Yellow. Trying to encourage another point, I turned him in the direction of a large yellow paper painting on the wall across from us and asked, What else do you see that is yellow? But Jasper did not respond, his classroom door opened, and he and his toddler peers shuffled in, uncertainly. Once in the room, Jasper again looked at the lights, pointed, Yellow, he said. Twice in a row. Did you see that…he pointed, I told his teacher. Jasper is pointing, his teacher called over to the speech therapist, nearby, a surprised look on her face.  After class, our SLP confirmed – Jasper pointed at a picture of the food he wanted at snack.

In my mind, Jasper’s spot on the CVI Range moves ever more firmly into Phase III. Like a thermometer sitting in the sun on the coldest winter day.


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