Thursday, December 20, 2012

Last day

Today is Jasper's last day of the school quarter, and I am particularly emotional. When Jasper returns after winter break, he will move from "tweenie" group to toddler group. I was offered a choice of two classes and chose the one that is held in the same classroom, with two of the same teachers and therapists from his current class. In short, a familiar setting, familiar people, a smoother transition for a little boy for whom change is not easy. But the transition may prove to be tougher for me than for Jasper.

It is hard to describe in words the gratitude I carry around for the team of doctors, therapists, teachers, who have helped Jasper. Ever since Jasper’s strabismus surgery last June, I choke up at the end of each ophthalmology appointment, blinking back tears - thank you for helping my son, I want to say, each and every time.

Jasper has been at EEU a relatively short time, about six months. Short by my time frame, six months is still a good quarter of Jasper's life at this point. Transferring him to the Experimental Education Unit at the University of Washington is one of the best decisions I have made in his recovery. Class is a structured playgroup with up to ten kids, between one and two years old. It is an integrated program - half of the kids are typically developing, half are like Jasper and have some kind of disability and / or delay. Parents may watch class via an observation room. Jasper started last May, near the end of spring quarter, after we had both recovered from whooping cough. In those first weeks, months, it was difficult to watch Jasper struggle with a new, unfamiliar routine. He did not like the structure, the sensory table, the food, or circle time. He took no interest in new toys, preferring to wander the room - usually the periphery - what I've come to think of as his mapping. It was hard standing behind the glass with the other parents, watching his perambulations, feeling like he would never get the routine. For the first three months, more often than not, I would collect Jasper afterward and leave with a lump in my throat. It was hard to imagine the day when Jasper would pick up his own mat after circle time, and put it away on a shelf three feet away. I questioned whether I’d made the right decision in transferring him there.

For reasons I will never know, fall quarter has been transformative. Maybe it was the time off during August summer break. Or maybe it was Jasper’s mastery of walking, allowing his brain to focus on new things. Now when I pick him up, his teachers and therapists (Monday speech therapy, Wednesday occupational therapy) consistently tell me Jasper had a great day. He ate a new food, used a spoon, drank from a cup, drew marks on paper, painted, walked over a ladder laying flat on the floor without tripping. He made good eye contact with his teachers. Jasper’s attention has improved, his perambulations have decreased. Recently, I stood in the observation room and watched in near disbelief as Jasper got up after circle time, bent down to pick up his mat, walked over and put it on the shelf - by himself, without being asked. I had thought it would be a long time before he could do something like that. Every day since then, I make sure to catch the end of circle time.

Come January, Jasper will have a new teacher, a new physical therapist. And I am having a hard time saying goodbye to the current teacher, the current occupational therapist. This has been the best school quarter for Jasper, a lot of growth, a lot of hard work. Jasper has also begun forming attachments to his teachers, especially the head teacher, a petite, athletic woman with dark brown hair, go figure. Teachers and therapists provide invaluable support to Jasper, but also to me. His teacher spent months searching for a TVI (teacher of the visually impaired) for us, at my urgent request. She gracefully handled my middle of the night email messages, begging for updates. She accepted my list of Twenty Things Jasper Needs Most in his recovery from infant stroke, a list inspired by Dr. Jill Bolte Taylor. His teacher always insisted I was never bugging her with my requests, and reassured me she was there to help.

Jasper is not the only one who has formed attachments. These amazing people who help my son learn, grow, reach milestones, are a source of stability in our lives right now. I know before we get to school that I will cry.

Wednesday, November 28, 2012

*Magical* People

At a recent neurodevelopmental appointment for Jasper, I got a random reminder about the amazing people in our life. Usually when retelling anything, I include far too much detail. Along with details of Jasper’s birth, medical history, and various therapies, I could not help but mention a few of these people to our practitioner. Listening to our story, she was reassuring, empathetic, and compassionate. You had a hard time at the beginning, she started, a sentiment that can still bring tears to my eyes. But you have these magical people who have fallen into your life to help. We do not have family here in Seattle. Instead we have Magical People.

From the beginning, when Jasper was a newborn, I was struck by how differently people treated me - the kindness we are all capable of - both friends and random strangers. At first this came in the form of supportive, caring responses when friends learned via Facebook that something was wrong with Jasper and we were still in the hospital a week after his birth. Before that, the superficial part of me worried that someone would figure out why I was not posting dozens of photos of Jasper after he was born, that something had gone wrong. Jasper was a few days old when I posted the first photo. He was hooked up to numerous machines with tubes and wires, with patches crammed here and there on his small, fragile body, enclosed in his isolette - I did not want to show that. In the first photo of Jasper, I am holding him, tubes and wires neatly wrapped up, hidden beneath a blanket. He fell right to sleep, a rare moment in his mother’s arms.

The messages from caring friends buoyed me. Friends, a few who I hardly knew, sent personal messages. Once Jasper was finally home, some came to visit - people I would not have expected, people I will never forget. Some went out of their way, all the way to South Seattle, to bring food.

In a previous post, I described Rob, who I now consider one of our Magical People. (This evening at swim class at Children’s Hospital, I thought again about the experience I wrote about in that post, the power of that emotional breaking down still takes my breath away.) In the dimness and uncertainty that accompanied Jasper’s birth, Rob was a constant, smiling, beaming presence. He was there to tell me that I was not alone, that everything would be Ok.

Eve was Jasper's first babysitter. She fell into our lives easily, highly recommended by my former prenatal yoga instructor. She was exactly what both Jasper and I needed. Jasper was just shy of three months old. He still felt impossibly fragile and had yet to have a normal EEG. (I held my breath between EEG appointments, waiting for that perfect result.) Eve had been a pediatric nurse for ten years, she adored babies, and she adored Jasper. She and I did not click at first but I stuck it out because she loved Jasper. Eve was one of the first people, other than me, that Jasper could recognize. Although she was a nurse - she currently works in geriatrics, the opposite end of the spectrum - she was far from conventional. It was hard to ignore the cloud of patchouli that followed Eve everywhere. She no longer even wore patchouli, it simply seeped out of her pores from years of overuse. Eve was from Scotland. In her thick accept, she would describe her plans to wrap Jasper in pastry while I was away....WHAAAT??? I would think, horrified, before recognizing the endearing sentiment. Eve was in her 50s, unmarried, possibly gay. She had short, cropped, dark auburnish hair, adorned herself in the most brilliant colors she could find. She did not drive but rode her 50-pound bike everywhere. She often told me Jasper needed more tie-dye in his wardrobe (he had none). Regardless of how I'd dressed him, after being with Eve, Jasper would be in his most colorful clothes when I returned. Eve was a yoga guru, or instructor. Sometimes she wore Jasper in his bright pink Baby Bjorn while leading her students through yoga classes she taught in her home. Eve's house was equally hyper colored, like something out of Alice in Wonderland. Eve was with us for about five months. When I decided to make the move back to Ballard, I took my time telling Eve. It would not be logistically practical for her to watch Jasper anymore, it was a good twelve mile commute. A generation older than me, Eve had a wisdom I had grown to appreciate. We often chatted for a good while when I came home, or picked up Jasper. Moving day was hard - saying goodbye - tears came from out of nowhere. I don't know what we would've done without you.

Dan is someone I barely knew before Jasper was born. One of those vague bike race connections, the name was familiar, but could I recognize this person when not in his race kit? A common phenomenon among bike racers. Dan was one of those early visitors. And once Jasper and I moved back to the Ballard neighborhood of Seattle, he would offer to watch Jasper. Can Jasper come over for the afternoon? You can go for a bike ride, how long do you need?? No hurry. I would think, Are you for real?? Dan has two kids, so Jasper got to spend the afternoon with a family. The bonus is that Dan is a firefighter and his wife works in the Nicu at a top rated hospital. Jasper could not be in better hands.

Jeannette is Jasper’s fairy godmother. We met in a Writing Children’s Literature class last spring. Jeannette was moved by Jasper’s story, and curious about how he was doing, whether we had family here, and if she could help. She is a retired preschool teacher who adores babies. She previously volunteered in an infant room back in Michigan, worked with an Autistic child. And she is an artist. Jeannette’s genre is fairies, she writes about them and creates them. Her tiny fairies are made from various materials, she knits teeny mittens for them. The fairies live in beautiful fairy houses made from gourds. Jeannette comes over every week to spend time with Jasper. When I open the door, Jasper reaches for her as if she was a grandma coming to visit. He gives her Big Hugs, the kind he gives me. Once, when heading out for a brisk bike ride during Jeannette time, she said to me, You get your endorphin fix by riding your bike. I get mine from Jasper.

Other Magical People include my special mom friends - moms with special needs kids of their own - who offer to watch Jasper when I have a job interview or an urgent medical appointment of my own. They make the work of caring for more than one child appear effortless, and seem to genuinely enjoy time with Jasper. And then there are Jasper’s teachers and therapists, who I cannot say enough good things about. Jasper attends school two days each week. Every time I pick him up after class, his teachers tell me what a great day he had, how he drank from a cup by himself, or chose to do art, or put his mat away after circle time. Things I sometimes had a hard time imagining he would ever do. I feel such gratitude for them, for what they are doing for my son, it is hard to put it into words.

These Magical People fell into our lives. I did not have to do the hard work of seeking them out - they found us.

Thursday, October 25, 2012

The Boy in the Moon, Thoughts + Quotes

The Boy in the Moon, by Ian Brown

I am being generous when I say this is only about the sixth book I have finished since Jasper was born a year and a half ago. This is not a record I am proud of, as reading at my leisure is something I dearly miss. Like most everything else, my reading choices are dictated by infant stroke. Preferred subjects include stroke survivor autobiographies, brain plasticity, accounts of neurological conditions, other parents' experiences raising special needs kids. Casual titles like Bringing Up Bebe, Born to Run sit on my nightstand, half-finished, read with half-enthusiasm, with half-interest. I neglect catching up on email, filling out pages long therapy questionnaires for Jasper, researching graduate school programs, applying for social security, and instead devote rare free time reading The Boy in the Moon. Our children have vastly different diagnoses but the author's words and emotions resonate at a visceral level. In the middle of the night, I have been plagued by many of the same thoughts, feelings, fears. There is no room for sentimentality. The starkness of his words - raw, ugly, honest, unbearable, atheistic - draws a vivid picture of life with Walker. There was a time when I would underline striking passages in books. With The Boy in the Moon, underlining was not enough. While reading I kept a pad of small post-it notes at hand. My book now sports a thick, bright pink fringe. What follows is a compile of those passages that made me ache, cry, laugh, that utterly tore me apart.

I have not written a book review ("book report") since about the sixth grade and will not attempt to do so here. I simply have a compulsion to share the experience of reading this book - my fraction of the experience of having a special needs child. A compulsion to scream, shout, cry to everyone around me - how too familiar these words are. How I wish I could not relate, but merely only empathize.

Some explanation of CFC, Cardiofaciocutaneous Syndrome - a genetic disorder thought to affect less than one hundred individuals worldwide - is best left to the author:

The name itself was nothing more than an amalgam of the syndrome’s most prominent symptoms: cardio, for ever-present murmurs and malformations and enlargements of the heart; facio, for the facial dysmorphia that was its signal characteristic, a prominent brow and down-sloping eyes; cutaneous, for its many skin irregularities... Symptoms ranged wildly in severity and kind...Some CFC children hit themselves, though most didn’t. Some could speak or sign. All but a few were anywhere from mildly to severely retarded. Heart defects ranged from serious to unimportant...Their skin was often sensitive to touch, to the point of agony. Like many CFC children, Walker couldn’t chew or swallow easily; he couldn’t speak; his vision and hearing were compromised...he was thin and wobbly, “hypotonic” in the medical jargon.

At the core of the book is the author's central question, Who is his son? Does he have an internal life? Is he even capable of one?

                                                                                *     *     *

The hard part is trying to answer the questions Walker raises in my mind every time I pick him up. What is the value of a life like his - a life lived in the twilight, and often in pain? What is the cost of his life to those around him?

Sometimes he cries for hours for no reason. There are nights when nothing works, and nights when he is up and at it, laughing and playing and crawling all over me. I don't mind those nights, tired as I am: his sight is poor, but in the dark we're equal, and I know this makes him happy. In the night, there can be stretches when he is no different from any normal lively boy. It makes me almost cry to tell you that.

I often wondered if we were imagining Walker's progress, inventing the connections we thought he was making.

I could spot the parents of the delayed kids in the school parking lot when I dropped Walker off: they were the ones who looked as if a bomb had just gone off in the back seat of the car. They were starved for contact and longing to tell the truth.

What I couldn't tell was what the routines meant to him. Did he know he was "painting" when the teacher was guiding his hands? He had a friend, Jeremy, but did he know what a friend was? He sat at the table with the other kids for Snack - a stretch of time named Snack, I loved that - but did he feel the communal buzz? What went on inside that thickened skin, behind that swollen heart? I didn't care if he never threw a ball or tormented his sister or skied beside me or told a joke or dated a girl (though I would love it if he did). What I cared about was whether he had a sense of himself, an inner life. Sometimes it seemed like the most urgent question of all.

But if he was asleep and I could stay awake, I could read, and did, voraciously. I have never appreciated words and books and time and the life of my mind more than I did on those stolen late nights.

...until twenty years ago, children this medically complex didn't exist. They didn't survive. High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality, especially at a practical level.

In practice, Walker deprives us of any privacy we ever had - and we are private people, introverts, readers and ponderers. Instead of bringing us together, Walker scatters us, making us both less private and intensely more so at once, desperate for a refuge where there are no interruptions, no surprises. I often worry I will never read an entire book again; my concentration seems permanently shattered...It’s all we can do to make it to the medical appointments.

Johanna (author's wife) had been in touch with [the] CFC network early on, before the Internet existed. But she was impatient then for specific advice, for skin creams and therapies that would help right away. "It seemed to be a lot about Jesus and angels and thinking of the kids as gifts from God," she told me years later. It was hard to think of Walker as a gift from God, unless God was a sadist who bore a little boy a grudge.

The disabled are a challenge to everyone’s established sense of order: they frighten us, if not with their faces, then with their obvious need. They call us to be more than we ever thought we would have to be.

Everything about Walker was complicated by something else, and there were many days when I appreciated that, when it deepened him, and gave me more to think about. Sometimes it was all there was to think about.

...on his good days, Walker is proof of what the imperfect and the fragile have to offer; a reminder that there are many ways to be human; a concentrator of joy; an insistent nudge to pay attention to every passing mote of daily life that otherwise slips by uncounted.

He made me realize how good we have it, most of us, most of the time - how we think we have problems, but we really don’t, compared to him. (discussion between the author and his wife)

But there was no escaping their guilt: it lived deep in them, deep in the germline of the maternal. Johanna was Walker’s mother, the human being out of whom his flawed and aching body had emerged. She could not think about his brokenness, it called that yelping sadness up from within her, and yet she could not ignore him either. The best she could do was stay calm, keep busy and moving, keep caring without asking herself too many questions. It was a delicate trick. Like trying to walk in high heels over a grate in the sidewalk, except that the grate passed over hell and eternal damnation.

Taking care of Walker was so all-consuming that all the time you weren’t caring for him, you had to spend catching up - on sleep, on work, on chores and tasks and taxes and returning phone calls, not to mention whatever exigencies and emergencies were waiting as far as his care was concerned. Whoever was caring for Walker, the other person was perforce catching up, and so it always felt as if you were doing it alone, on your own.

Do you recognize any of this? I suspected on those dark nights no one else did, that no one else knew what this was like; I was convinced we were alone. It’s hard to explain how we felt for having failed to teach Walker to sleep or speak or eat or pee or even look at us - can you imagine the magnitude of that failure?

He loves the snow, the outdoors, the fresh air on his ears and his head. Everything he likes is so important to me. They feel like accomplishments.

What I resented was the idea of my son’s life reduced to a typing error in a three-billion-long chain of letters, to one dinky nucleotide. The absolutism of genetics offended me.

First the doctor showed me a cross-section of a normal corpus callosum: the part I could see looked like an oxbow lake, or a long balloon animal on a white plain.
Then he showed me Walker’s. It didn’t look like a lake or a balloon dachshund. It looked like a thin trickle of a stream with a tiny pool at its end, like a tendril, a single shoot off a sweet-pea plant, a fraction of the width of a normal corpus callosum.
It’s hard to describe how quickly it crushed me.

The more I struggle to face my limitations as a father, the less I want to trade him. Not just because we have a physical bond, a big simple thing; not just because he’s taught me the difference between a real problem and a mere complaint; not just because he makes me more serious, makes me appreciate time and Hayley and my wife and friends, and all the sweetness that one day ebbs away.

I held him in my arms as quietly as I could, and thought: this is what it will be like if he dies. It will be like this. There was nothing much to do. I didn’t fear it. I was already as close as I could be to him; there was no space between my son and me, no gap or air, no expectation or disappointment, no failure or success: only what he was, a swooned boy, my silent sometimes laughing companion, and my son.

Thursday, September 20, 2012

Neither Here Nor There

Jasper is a special needs kid whose needs are not immediately obvious. Not in such a way that people avoid eye contact with us when I walk him down the street in his stroller. On the contrary, Jasper is the recipient of generous compliments. These days he will often even look at an admirer's face. Jasper’s specialness is more subtle, but ever present, especially to his mother. He is special enough that, in the company of his typically developing peers, I become keenly aware of his differences, his delays, his disability.

Gross motor skills are Jasper’s strength. It is the one area where he is on track. While no record setter, his gross motor milestones are within normal range. He crawled and pulled to stand, simultaneously, at 10 1/2 months old. He started walking at just over fifteen months. People - friends - see Jasper crawling, walking, even running, exploring the world and think, He’s doing great! Put Jasper side by side with a child who cannot crawl, walk, talk, and Jasper appears typical. Then put Jasper next to a typical one and a half year old, who not only walks and talks but points at a bird flying by, or runs after a dog at the park, who asks questions, who goes and gets his shoes when asked, who can sit and play for a stretch of time. Or figure out how to retrieve a Cheerio when dropped into an open plastic container. And there is the difference. Jasper's challenges become more apparent.

Jasper’s world is smaller than that of his typical peers. Other kids react to various kinds of stimulus around them, it is constant, it is how children learn. Jasper’s world - whether because of his vision or because of his stroke - is smaller, it extends a few feet beyond him. He does not see the birds, the dog at the park, or they simply do not register in his brain. Jasper happily runs through the grass, looking like any other kid, except that he literally runs with abandon - without a visual target as his destination. (And so we practice running with purpose with me, arms outstretched, as his visual target.) His world is as big as what he can visually make sense of. In his stroller, he becomes preoccupied with chewing on the straps. Or as his new, additional occupational therapist puts it, “he is doing math,” by folding the strap in various ways, halving its length. His mom is at the center of this world. Beyond that are his toys, his home, school, and the few people we see on a really regular basis. Trees, houses, dogs standing right in front of him, birds, animals at the zoo, mountains are not yet part of his world. Flowers within arms reach are part of his world.

He does not wave bye-bye. We practice at every opportunity but the ritual gesture has not sunk in. I worried in advance about this particular milestone, which might reveal something about his vision that I did not want to know. His vision seems good enough to see the hand waving, especially the slow rate at which we practice. Am I way, way off in my estimation of his vision? Or, cognitively, does he really not get it? And which is worse?

Jasper laughs a lot - more than any kid I have seen - people comment on his hearty, belly laugh all the time. "What a happy guy!" “He’s always laughing!” “Is he always so happy??” (The answer is yes, he is pretty much always happy.) I still cannot tell if Jasper laughs because of his stroke... or in spite of it.

Where does Jasper fit? Where do we both fit? I have few friends who have typical kids Jasper’s age. This is somewhat deliberate. Especially at the beginning, it was painful to see typical babies his age, to see what he should be doing, if only so much as focusing his gaze on someone. As mild as Jasper’s issues may appear to some, he is part of the special needs spectrum. We do not go to school twice a week, or run to multiple therapy and medical appointments for fun, or because we have nothing better to do with our time. I should not have to explain Jasper’s issues, make a case for him, to a fellow special needs mom who does not get his delays, his challenges - our challenges. She simply sees him running, and thinks, Oh, he’s fine....

Monday, September 10, 2012

Seven Minutes

In the end, it took seven minutes to find Jasper an iPad. I’d spent the last few months researching and applying for iPad grants from a handful of different philanthropic organizations but got nowhere. A friend from my moms writing group put the word out to her husband’s software company here in Seattle. They commonly use iPads for testing, and replace them as new versions become available. Seven minutes after the email message was sent, our guy offered up his 3rd generation, a distinction that is somewhat lost on me, but which I appreciate nonetheless. Not only kind in his gesture, but generous, parting with the newest model rather than an older one, for Jasper’s sake. In addition, two ladies contributed iTunes gift cards to help ease the app burden.

My quest for Jasper’s iPad was not frivolous. For many special needs kids, iPads can be helpful learning and communication tools. Our vision educator first introduced one to Jasper last winter. In Jasper's case, there are stroke apps, and apps for cortical visual impairment or CVI, Jasper’s brand of visual impairment. While careful not to put too much faith in technology, my hope is the iPad will be a tool that helps hold Jasper’s visual attention - a challenge his teachers struggle with - and improve his cognitive skills.

Whoever you all are, Jasper and I send you our deepest gratitude... thank you, thank you, thank you.

Last but not least, thank you, Hollie, for making this happen.