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....

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.

Theraplay

Jasper is barely eighteen months old but I cannot remember a time when I did not observe his “play” with the eye of a therapist. As a newborn, I watched Jasper constantly for the visual tracking his neurologists said would not happen. I rotated a set of bold, developmental soft blocks back and forth in front of his eyes. I rejoiced the first time, around eight weeks old, he looked at and responded to the Stim-Mobile I had placed above his crib - I knew he could see it and took video for his neurologists. Our vision educator came into our lives when Jasper was three months old. By then, I was already his keen observer. From our vision educator, I learned to observe him even better.

The stroke was bilateral, but somewhat worse on the right. Jasper kept his head turned mostly to his right for the first several weeks. As his body movements developed, I watched for asymmetry, making sure he used both right and left sides equally. He did not. He would cross his midline with his right arm to reach something on his left, instead of simply engaging his left arm. From the beginning, I tended to place objects to Jasper’s left, in the hope of coaxing him - his limbs, his eyes - to the left. I hung a black and white infant toy left of center on the handle of his car seat. A stuffed animal lion charm dangled down on the left side of his stroller. Fortunately, Jasper’s gross motor asymmetry was mild and only affected his upper body, and seemed to resolve on its own.

Last week was Jasper’s eighteen month check up. The check up appointments are becoming more difficult. When there were only three things he was supposed to be doing, Jasper was doing great. His therapists told me he was doing great. Now the list of things he should be doing has grown, along with the list of things he is not doing... yet. In addition to the list, his pediatrician asked about other skills. Can Jasper follow a command, if you ask him to go get his shoes? Does he bring things to show you? Does he clap his hands? No... not yet. I add, he does not wave bye-bye or point either... not yet.

At school, Jasper’s teachers and therapists work to diversify his functional play, and to increase his attention span. At home, I sit down to play with Jasper and automatically choose ring stacking, which Jasper can do, though his limited depth perception sometimes gets in the way. It occurs to me we should be working on more challenging play - stacking blocks, putting a puzzle together, pointing at simple pictures in books - play that Jasper has not yet mastered.

Jasper and I do not “play,” we theraplay. It is difficult to shut it off. When watching him, I can’t help but notice the quality of what he is doing, how he is or is not using his vision. He doesn’t get the ring quite right on the stack. (In our house, there are lots of re-dos.)  He does not track the ball as it rolls past him, but he still knows where to find it. He can almost balance one block on top of another. Again, depth perception interferes. I sometimes wonder what it must be like to watch your child play innocently, without anxiety, expectancy. To watch your child grow, develop, hit milestones easily, effortlessly. And think, When will Junior do this or that? Instead of thinking, Will my child be able to do that?

Right now, we are on summer break from school. Summer break from therapists. Time to run in the grass, go swimming, bike with momma. And plenty of time for theraplay. All I can think about is crossing some things off the list by the time Jasper goes back to school in mid-September.

Strabismus Surgery

It is hard to say how much sleep I got the night before Jasper’s eye surgery. Jasper fell asleep early - earlier than he had in weeks, allowing me time to prepare physically - pack his baby blanket, his favorite g-raff (giraffe), his radio. And time to prepare emotionally. Surgery had been on various parts of my mind since January, and on the calendar since March. Now I felt oddly calm, ready. I had done what I could to prepare. The week before, Jasper and I went on a surgery pre-tour at Swedish First Hill. I knew the layout, the sequence of events. On the morning of surgery, I would not waste energy being discombobulated.

My best calculation is four to five hours’ sleep. In spite of preparation, I lost at least a few hours to worrying. The sound of the alarm came too soon. I let Jasper sleep as long as possible. It wouldn’t take much to get him ready - no milk, no food, the hospital would provide garments. When I woke Jasper, he woke without fuss. I changed his diaper, put a jacket on over his sleeper, and we left.

Surgery is scheduled by age. Jasper was second, 8:30 a.m. Check in no later than 6:30. The sequence of events went as expected. Upstairs, waiting room one (toy room). Review medical history with nurse (“No, this is not our first hospital experience...”). Then downstairs, to surgery, and waiting room two, where we would wait before and during Jasper’s surgery. Throughout surgery, there would need to be someone in the room who could sign a consent form.

By now, Jasper must know we do not wake up that early for anything good. By the time we got to waiting room one - and attempted to do vitals - he knew something was up. I put him in his surgery garments. A dull yellow top with equally dull, but not quite matching, yellow pants. Both were at least two sizes too big for him. From this point, in his clownish outfit, until just before surgery, there was almost no consoling or distracting him.

Waiting for 8:30 was almost as excruciating as waiting during surgery itself. Waiting room two also had toys, but Jasper wanted nothing to do with them. For a short time, I distracted him by blowing bubbles. Aside from that, he only wanted to cling to me. He wailed when I ducked into the restroom for a few minutes. I kept calm, knowing I would feel better as soon as we saw our ophthalmologist, Dr. Hope.

The first strabismus surgery of the day was a seven month old baby girl with crossed eyes. Her surgery ran long, meaning ours would be a little late. Shortly after 8:30, our doctor came in with a report for her family: “She did great...” he began. As soon as I heard those words, I started visualizing him delivering the same report to us: “Jasper did great...” In my mind, I repeated this over and over - the same way, when traveling, I visualize myself safely arriving back home.

Jasper was next. The doctor again explained the surgery, what to expect. Blood red eyes, bloody tears. I brought him photos of Jasper, so that he could double check the angle of correction, forty degrees. The anesthesiologist came over then. He described his role, the process. He told us Jasper was at greater risk riding around in the back of the car than he would be on the table. I believe you, I said. My job was to stay with Jasper, hold his hands, talk to him, sing to him, while the anesthesiologist held the plastic mask firmly over Jasper’s face. As soon as he falls asleep, I will kick you out, he told me.

Our Child Life Specialist returned for Jasper shortly afterward. Jasper had fallen asleep while the doctors were talking to us, and I’d hoped he’d stay asleep. He did not. I got up, Jasper in my arms, and we followed her down the hallway through heavy double doors. I walked into the room and lay Jasper on the table as I was told. Hold his arms down, the anesthesiologist reminded me. I held Jasper’s arms and cried, singing “Willie Was A Whale,” without even thinking.

            Willy was a whale and he walked on the water

            And he tried to be wough and he tried to be tough

            But Willy wasn’t weally wough he wasn’t wough at all

            He was a willy white whale and he walked on the water, oh yeah

Jasper’s arms eased up, then relaxed and were still, and I was told to leave. You did great, the anasthesiologist told me. I left the room crying, guided by our gal. I went upstairs to the main lobby, found my friend who was there for support. I hugged her and sobbed.

I brought a book to read during surgery, Little Bear Sees, How Children With Cortical Vision Impairment Can Learn to See. CVI is our greater concern, and it made sense to me to focus on this - the future - during surgery. I hadn’t finished the introduction before we heard muttering at the front desk outside waiting room two, about Jasper. A few minutes later, our doctor came in: “Jasper did great...”

Only one person is allowed in recovery one, still downstairs. The nurse said Jasper was starting to wake up. He’s sooo cute, she added. Jasper sat up and was flailing his arms. I forgot to mention, Jasper gets restless when he’s close to waking up, I told the nurse. Jasper lay on the stretcher, eyes closed. In the outer corners of each eye were pink-red tears. I knew his eyes would be totally bloodshot - bloody - after surgery. The nurse picked him up, carefully gathering his IV and oxygen cords, and put him in my arms, the same way I had held him in the NICU as a newborn. Though not nearly enough. I offered Jasper a bottle of sugar water, which he sucked down, then cried for more, eyes closed, and sucked down a second bottle. Contentment followed. Wrapped in his baby blanket, he fell asleep in my arms.

Hope.

Hope arrived in the mail yesterday.

A few weeks back, Jasper and I had a particularly hard day at Children’s. Two opthalmology appointments that would give a better idea of Jasper’s vision. The moment of truth, I thought. I now know better - there is no one moment of truth with Jasper - it is a long, drawn out process.

I told Jasper we were going swimming. Children’s has a pool for children and family to use on the day of an appointment. After Jasper’s dismal ophthalmology test result, I was numb. I wanted to go sit somewhere by myself and cry. I held it together enough to visit a friend and his daughter, who was recovering from surgery. Open swim was at 4 p.m. After seeing our friends, we had a good half hour longer to wait. I debated skipping the swim. But I had promised Jasper. I had enjoyed packing his new swim diaper, his towel, a comb for his wet hair.

It was almost snack time. We cruised through the cafeteria then found a table in the lounge next to the gift shop. There is always a vendor alongside the gift shop. I fed Jasper his snack, and kept peeking over at the jewelry set out on tables. When he was finished I made my way over to browse. The jewelry designer had a selection of silver wire bead necklaces, bracelets... and charms. It was the charms that caught my attention. Assorted shapes of flat silver with hand etched designs and words. I pored over them for a long time. Walk on the beach. Hearts. Swirls. I decided on a charm with a heart and star. I paid for my purchase and Jasper and I made our way to the pool.

I began wearing my charm as soon as we got home. A few days later, I sent the jewelry designer the following message:

             

Dear Halina,

            

This past Tuesday I was at Children’s Hospital and purchased a charm from you. My 16 month old son had two opthalmology appointments that day. Afterward, we hung around, waiting to go swimming at four.

Our appointments were disappointing. At birth, my son had a stroke in the occipital lobe (vision area) of his brain. That day, the opthalmologist had nothing good to say about my son’s vision. I looked at your charms for a long time before selecting one with a star and a heart. What I was really looking for though, was hope. You should have some charms that say hope. Because that is what parents at Children's need.

Halina replied:

Dear Brenda,

I am very touched that you took the time to write to me and suggest that I have Hope charms available at Children's. You are absolutely right, and I had not thought of that. Thank you so much.

I am very sorry to hear about your son's diagnosis. It is so difficult to see challenges put upon our children and be powerless, no matter how much effort we are willing to put into it, to change it. My heart goes out to you and your family.

I would be delighted to create a charm for you that says "Hope" as my gift to you. It will be in sterling silver, but it may be slightly larger so that I can fit the word on it.

Hope.  

NW Run / Walk for Epilepsy

On Saturday, June 16, Jasper and I ran in the Northwest Run / Walk for Epilepsy 2012. We ran because Jasper has had seizures, and because we know other children and babies who live with seizures. Seizures in children cause developmental delays. In the worst cases, seizures end young lives before they have barely begun. I do not know whether Jasper is considered to have epilepsy. As a newborn, he experienced subclinical seizures, which led to the discovery that he had suffered infant stroke at birth. Doctors called his seizures “difficult to control” - at two weeks old, he came home from the hospital on three different anti-seizure medications. He did not have a normal EEG until almost six months old. He tapered off his last anti-seizure medication when he was eight months old. Jasper is at risk for seizures for the rest of his life. Having seen the damage seizures can cause - from delays to worst case scenario - I consider us extremely lucky.

I don’t know the official walk participant count but it was not what I expected. I had hoped for a huge turnout - a crowd that would absorb us. Gatherings of diverse people coming together for common cause - cycling, music, epilepsy - is powerful and always moves me deeply. As Jasper and I started out, running, moving ahead of the purple walkers, I swallowed several times to hold back tears, maintain my poker face. I maneuvered Jasper’s stroller between walkers, passed a few other runners. A short run, but it felt good, and I put all my energy into it. We made it around the lake easily - Jasper napping the entire time. As we approached the end - also the beginning - an organizer told me, “You’re the first runner to finish.” The NW Run / Walk is not a competitive event, but I leaned down anyway and whispered to a sleeping Jasper, “We won, baby.”

Visual Evoked Potential

Visual Evoked Potential. It was the word potential that gave me hope. VEP is a kind of EEG. It involves fewer probes and  focuses on the back of the head, on the vision center of the brain. Also the site of Jasper’s stroke.

The pediatric opthalmologist at Seattle Children’s - not our regular eye doctor - recommended Jasper have a VEP prior to strabismus surgery. Results would show the strength of Jasper’s visual pathway, is it an open or a closed circuit? It could also help determine, is strabismus surgery a good idea? Would it be effective, would it take?

Jasper’s vision is inconsistent. Sometimes, he seems Ok. He sees his toys, he doesn’t run into walls, he imitates my facial expressions. Other times, he struggles. He searches for me against a complicated background, his tracking doesn’t match the velocity of objects, he looks at lights too much. In spite of his visual inconsistencies, I had high hopes for strong signals, sufficient activity, a closed loop. At the recommendation of both Jasper’s regular ophthalmologist, and our former vision therapist, I had decided on surgery regardless of VEP results. Because, as our regular doctor told us, “it is worth doing,” to give Jasper’s vision the best chance. After our VEP attempt in February, I didn’t expect Jasper to tolerate the test. Jasper’s cooperation yesterday was a blessing and a curse. Because I had hope - because I can see that Jasper can see - I didn’t expect a poor result.

The Children’s ophthalmologist is one of the top pediatric opthalmologists in the world. He is notorious among parents for his crude bedside manner, his tactless nature, his harsh choice of words. He was an hour late for our 1 p.m. appointment. The exam room was dim. He showed me a printed out graph of Jasper’s results. There were two graphs, each representing a different pattern that was displayed on a screen during the test. The first test was pretty flat, and the esteemed doctor dismissed it. The second graph was a little more lively, but nowhere near the spikiness a typical kid has. I swallowed hard. And breathed. I wanted to cry. But didn’t. Jasper’s result showed low activity, a pretty open loop. As the doctor talked - this man who had diagnosed my nine day old newborn with cortical blindness - he continued to refer to Jasper as cortically blind. He could not recommend surgery, because it might not take. I told him I already knew that. He told me Jasper had “taken a hit.”

Yesterday was a hard day. It left me drained, sad, confused, questioning. Jasper’s results are not consistent with Jasper’s behavior, at least the doctor gave us that.

For the past month, I have agonized about sticking with our regular ophthalmologist, and having surgery done at Swedish First Hill. Or staying within my comfort zone, and having surgery done by Children’s ophthalmologist. Stick with our guy, who is optimistic, positive, hopeful, top notch. Or have it done at Children’s, by someone who has nothing good to say about Jasper’s vision. A doctor who has no hope for Jasper’s success.

Today was about recovery. I finally feel at ease with my decision. Jasper will have strabismus surgery at Swedish, with our regular guy. I look forward to a new environment.