Sunday, December 5, 2010

Merry Christmas, Jukie


‘Tis the season of gratitude and giving, and as always, I am loving every aspect of the winter holidays.

I was raised a Preacher’s Kid. In fact, I’m a PK two times over! (This is a subject for another entry -- trust me.) I will say that perhaps the one great part of growing up a PK was our living the magic of Christmas every year. Christmas surrounded us and sustained us for the entire month of December.

Now that I’m grown, I still start Christmas early. On Thanksgiving evening, I start playing all of the traditional carols, singing the harmonies that I learned in high school choir. I recall the many concerts my friends and I performed (as far away as Japan), and I remember that I was known for my tears on stage because I couldn’t help but cry through the performances; the music was just too beautiful.

My kids know that we (Mommy) must hang the Christmas lights on the house the day after Thanksgiving. Rain or shine – those lights go up. Driving around town in the evenings the kids “oooh” and “ahhh” from the back seat, marveling at the impressive light displays, while I bask in the feeling of connectedness that we all seem to share during the holidays. Menorahs are lit. Occasionally, we even see peace signs light some windows. Hooray! I have to fight the urge to knock on the door and give the peace-lighted people a hug. That’s just how silly I get this time of year. Fortunately my 13-year-old daughter would never let me do such a thing.

On my quest to create a magical holiday for the kids, I collect small items for Geneva and Truman’s wooden Advent calendars throughout the year. Each morning, they race downstairs to find what I have put in their little boxes while they were sleeping. (Silly bands, Matchbox cars, and Toy Story undies have been hits this year.) I may enjoy this activity even more than the kids do.

Davis, California is a wonderful place to raise children, an affirmation which never feels truer than during the first weekend of December. The Davis Art Center holds its annual holiday sale, which is guaranteed to be jam-packed with Davisites sipping hot cider while perusing the many fabulous wares made by local artisans, and catching up with all the friends they encounter. We look forward to this event all year long. Also held early in December is the annual tree-lighting parade. Families line up early outside of our natural foods co-op, gathering candles and glow sticks. Then the UC Davis Marching Band-uh leads us to the tree to be lit, with Santa sitting nearby. Walking slowly with my husband and kids, all of us in candlelight, seeing the shopkeepers on their doorstops watching us parade past their stores, I discover yet another opportunity to fight back tears. I think about the year we’ve had, and the feeling of community I feel with my family and friends in Davis. I see the wonderment in my five-year-old son Truman’s eyes, and I can’t help but cry.

And if it seems that Jukie is missing from all of the above, he is not. He walks with us (sans candle) in the parade. He chows on popcorn at the Varsity, watching the animated How the Grinch Stole Christmas! He jumps around to the music in our house. As with just about everything, Jukie kind of has his own, unique take on the holiday season. I could feel wistful that Jukie doesn’t have an Advent calendar. But he wouldn’t want one (except maybe to rip the doors off, or eat the little pine cones). But I don’t feel bad that Jukie may miss some of our experiences of Christmas because he quite happily enjoys the holidays -- probably even more than the rest of us. Honestly, I envy the simple joy Jukie finds in the Season, and I learn a lot from his quiet peaceful absorption of the events around him. While many of us are running around checking off our to-do lists and feeling overwhelmed, Jukie gives us the gift of reminding ourselves to slow down and see life through his more patient eyes. As I returned home the other night, about an hour after Jukie’s bedtime, I pulled into the driveway and looked up to find Jukie sitting in his windowsill. He was looking out from his darkened bedroom at all of our neighbors’ Christmas lights. I did not chastise him for staying up past his bedtime. Instead, I went into his room and sat with him for a while, looking with him at all of the lights. After a few minutes, he looked at me, gave me a smile and climbed into his bed. I tucked him in, kissed his cheek and whispered, “Merry Christmas, Jukie.”


Tuesday, August 24, 2010

Defying Gravity


This past Sunday I took my twelve-year-old daughter, Geneva to see her first Broadway musical: Wicked. Having heard so many rave reviews, and knowing the powerful message behind the well-known song “Defying Gravity,” I had for years wanted to take my tween daughter to see this show, an enchanting spectacle that taught us both some important lessons just as Geneva is about to start junior high school.

For those of you unfamiliar with the story, Wicked is an alternate take on the story of The Wizard of Oz. In this version, we follow the lives of Elphaba, (the play’s green protagonist, and the future Wicked Witch of the West) and Glinda (the popular Good Witch) from Elphaba’s birth, through the two women’s first meeting and initial mutual dislike, their later friendship struggles, and then their closeness and eventual rivalry over the same man, a prince named Fiyero.

Geneva and I went to San Francisco to see the show with our friends Connie and Claire, another mother/daughter pair, just as Connie and I are preparing to release our precious girls to the new world of junior high school. As we quickly approach that first day of school (tomorrow!), I imagine that Geneva is feeling a combination of excitement and uncertainty (I know I am). All summer long, we’ve been preparing for the big first day. We’ve shopped for clothes and shoes befitting a middle-schooler. I offered to purchase her a new backpack, telling her that I had heard rolling backpacks weren’t “cool” in middle school. “So what?” she said. “I like mine.” Geneva and I have mapped out and practiced the two mile bike route, organized a bike pool (safety in numbers!), and I raised her bike seat to accommodate my girl’s longer legs. She and her brothers and I have wandered the empty school grounds, peeking in classroom windows and wondering which locker will be hers. Her new lunch box hangs in the hallway pre-filled with surprise treats and a note. And throughout the summer, I have watched her blossom into a most beautiful, confident 7th grader. She still has one foot planted firmly in childhood, but more and more this summer I have seen her traveling on a journey towards the woman that she will become.

When I think about what she truly needs to thrive in her next phase of life, the tumultuous teen years, I hope that I have helped to cultivate in her a strong sense of self. I want Geneva to continue to think for herself, to feel confident in who she is, and to follow her own desires and dreams.

Certainly, Geneva has experienced her share of adversities in her short life, all of which have helped make her poised and resilient. As a kindergartner, Geneva once told me that her dangerous peanut allergy made her feel like an alien. I can imagine that having a brother like Jukie makes her feel a bit alien as well. The five of us do stand out in a crowd. In our family, we talk about feeling like we live in a different world, in a different reality from most people. The kids in our house feel much more like Elphaba than Glinda, and they’ve made their peace with that.

I found myself reflecting on this feeling of outsiderhood that all tweens and teens know, for throughout the first hour of the show, I was struck by how much Elphaba reminded me of Geneva. Elphaba is smart and thoughtful and brave, qualities exemplified best by the first act’s beautifully written final song, “Defying Gravity.” Eager throughout the first act to hear this uplifting song, I squeezed Geneva’s hand as Elphaba began to sing about wanting to follow her own heart, taking a leap of faith, and trusting herself, without concern for others’ rules or opinions :

Something has changed within me
Something is not the same

I'm through with playing by

The rules of someone else's game


Too late for second-guessing

Too late to go back to sleep

It's time to trust my instincts

Close my eyes

And leap...

It's time to try defying gravity


I think I'll try defying gravity


And you can't pull me down

Geneva’s eyes grew large and misty. Goosebumps covered my arms. As we watched the singing Elphaba take to the air for the first time, Geneva and I were both transfixed by the beauty of the harmonies, the lyrics and the staging. Sitting next to my girl, and feeling such pride in her and confidence that she will continue to defy gravity as she navigates these coming challenging years, I couldn’t stop my tears.


Tuesday, August 10, 2010

Back to School



Perhaps every mom wonders where the time has gone as she watches her children grow, develop, and reach and pass milestones. Many parents of kids born with SLOS were told that their children likely would not survive infancy. So for these parents, each milestone is sweeter. While Jukie’s body is uncharacteristically strong for a child with SLO, his delays are “global,” so we watch him closely. We notice, savor and celebrate each new development.

Tomorrow Jukie begins 4th grade! Maybe because 4th grade brought big changes for our daughter three years ago, I feel as though I’ve been busily preparing for this momentous transition all summer long. Last week, I took him for a back-to-school haircut. This morning, I laid out his first-day-of-school outfit (including a tee shirt that reads “heroic”). His backpack, fully stocked, sits in the entryway awaiting his chubby little arm. My little Jukester will happily run to his familiar school bus driver tomorrow morning. Jukie loves adventure. And for him, school is full of adventures. I can always tell he had a great day when he arrives home covered in dirt and paint, and full of smiles.

But there is another side to our kids’ growing up. It is bittersweet. Just as the highs feel higher with our Jukie, the worries feel more significant. To me, Jukie seems at once “big” and also still baby-like in his perfect, sweet simplicity. Mothers’ instincts are to protect their cubs; I could not feel more protective of my special baby bear. Needing round-the-clock supervision, Jukie is 100% vulnerable. He will (and has) run out in traffic. He will eat anything which appeals to him, food or otherwise. Given the opportunity (like his mom’s turned head), Jukie will wander off. Once, when I told him that we could not go to the park, he climbed our fence and ran a mile away to the park he wanted to visit. He has more determination than common sense.

My protective feelings for Jukie also can make accepting his development a bit complicated. His dad and I looked at each other today and said, “4th GRADE?!” Is Jukie really entering 4th grade? We feel partly incredulous, as Jukie seems to transcend “grade.” We recall his sister Geneva’s 4th grade experience: the curriculum (studying the State of California), the change in emphasis from learning to read to reading to learn, and the longer school day. Of course, none of the typical 4th grade curriculum has anything to do with Jukie’s school experience. Jukie walks his own path and attends to a curriculum written expressly for him. (And there are benefits, as well: we won’t have to help create a
3D model of a California Mission this year!)

On this last day of Jukie’s summer, I reflect on how far he has come in nine years. As his mommy, I see even his most subtle areas of growth. This summer, he learned how to pump his feet while swinging. His receptive language continues to develop. (I’ve learned to watch what I say unless I want Jukie to act on something he may have heard me mention.) And I’ve watched a new level of maturity develop. Jukie seems older, calmer. Even his hand feels bigger in mine.

Tomorrow as I wave to Jukie from the curb, I know that I will feel that first day of school pang of excitement mixed with nervousness for my big Jukie-boy. I am so proud. Jukie is my hero.


Thursday, July 29, 2010

It Shouldn't be this Hard


After listening to my rant against Jukie’s latest health care snafu, a friend simply commented, “it shouldn’t be this hard.” Such a simple statement, but I have repeated it silently many times since then. Many aspects of raising a child with a disability shouldn’t be so hard. We should not have to fight school districts to give our kids the services they need. We should not have to endure the endless stares and poor behavior of others directed at our children, or the condescendingly “helpful” parenting tips from parents of kids without the challenges our kids face.

And here’s what I’m facing now: it shouldn’t be so hard to get Jukie the medicine that he needs to be healthy. Born with Smith-Lemli-Opitz Syndrome, Jukie cannot effectively produce cholesterol. Cholesterol is necessary for brain function, and other essential functions in the body. Jukie needs cholesterol to live the way that a diabetic needs insulin, or a person with hypothyroidism needs Synthroid. Yet Health Net, our insurance provider, has denied him coverage for the cholesterol supplement (which must be ordered by a medical specialist and compounded into a “medical food” by a specialized pharmacy). Health Net’s second denial letter of our appeal read, “Per Health Net Medical Policy, special medical foods are considered medically necessary only when mandated by state law.” That statement actually denies the medical necessity of the cholesterol just because laws haven’t been written to protect individuals like Jukie with rare syndromes (as they have for say, people with Phenylketonuria, also known as PKU, who also need medical foods).

Our current fight for Jukie’s medical needs began eight months ago, December of 2009, when the National Institutes of Health, which had been providing Jukie’s needed cholesterol, ran low on funds and had to suspend providing all kids with SLO this drug. Sensing an epic battle looming, I immediately got to work trying to obtain it through our insurance. Sounds fairly straightforward? Since that time, I’ve repeatedly faxed, e-mailed, called and visited our pediatric office, a genetic office, a county agency, and the NIH, only to encounter one roadblock after another. And the most frustrating part is that I’m trying to navigate this process without a guidebook. I feel like I did when I was 20 years old, traveling through Germany while knowing only about ten phrases in German. The difference is that everywhere I went in Germany, kindly Germans spoke MY language and offered their help. Complete strangers helped me read maps, order food, find the right trains, and even walked with me to my destination. With this insurance battle, I encounter no one who offers much assistance; in fact, too often I am met with resistance and outright denial. And there’s certainly no guidebook.

It’s times like these that I am grateful for my SLO family. Together, we are writing our own guidebook. We are a tight bunch. Most of us know each other and maintain fairly close contact, considering our distance. On Facebook, we’ve got families in the US, UK, Ireland, Germany, South Africa, Australia and New Zealand. Everyone who had received their child’s cholesterol from the NIH found themselves in the same situation, having to look to their insurance to provide it. Some insurance companies approved the cholesterol immediately. Others, such as mine, repeatedly denied the drug.

As each medical office ran into difficulty, they all gave up. When I called to inquire as to the status of our quest, I’d hear something along the lines of “oh, I thought that other agency was going to handle it from here,” or “I couldn’t find a pharmacy willing to make it so….” I wanted to complete her sentence with “so I never called you back.” Realizing that only I, as Jukie’s mother, had a stake in the outcome, I took control and searched for a compounding pharmacy willing to look at the prescription and also to deal with the semi-complicated billing issue. And I found family-owned
El Macero pharmacy, whose owner, Brad, said to me, “I will bend over backward to make this all work for your son.” Instead of accepting the inevitable difficulties involved, this pharmacist welcomed the challenge, even calling to ask me to tell him more about my son’s syndrome and how it affects him. To parents with medically challenged kids, people like this pharmacist seem like angels who swoop down and rescue us when we need it most. Just when I felt hopeless, this man stepped in and recognized that Jukie and I needed help. And that’s it! We mothers and fathers can feel so alone and invisible while trying so hard to navigate these challenges. For eight months, I felt like screaming, “doesn’t anyone want to help me and my son? Doesn’t anyone see our struggle?” I’m still crossing my fingers that the billing piece works out. But at least now I have someone on our side. And do you know what he said as I thanked him for all of his help and caring? He said, “you’re very welcome. It truly shouldn’t be this hard.”

Friday, May 28, 2010

Jukie Life Lessons


One of Davis, California’s claim to fame is that there are more PhD’s living here than in any other small town in the U.S. I have no idea if that’s true. But there are certainly a lot of smart people living in this university town. In 2006, CNN Money Magazine ranked Davis as the second most educated city (in terms of the percentage of residents with graduate degrees) in the United States.
And when I look around at the Farmers’ Market each Saturday morning, the population seems to be divided equally between parents and children (oh, and about 25,000 college students). Davis boasts one of the strongest school districts in the state, so it’s no surprise that one finds a tremendous local focus on our smart kids. We’re like Garrison Keillor’s Lake Wobegon, where all of the children are above average.
For the most part, living in a town with so many engaged and involved parents is wonderful. (I’m married to one of those UC Davis PhD’s.) But, there’s another side to all of that near-obsessive focus on our children’s academic lives: it’s intense. Kids certainly feel this pressure to perform to their parents’ high expectations. And parents feel the competition between each other. I have overheard many typical Davis conversations over the years featuring parents of preschoolers who wonder which path might take their child to an Ivy League school, or who agonize over whether or not to place their child in a self-contained GATE classroom (gifted and talented education). Truthfully, I have been involved with some of these discussions. I also struggle with finding the right balance between obsessing over a child’s academic performance versus providing support while following a child’s lead.
Perhaps I have an edge that others don’t. For, when I find myself wondering if my twelve-year-old daughter will get into Stanford, her nine-year-old brother, Jukie, quickly slaps me squarely into reality. Jukie won’t be going to Stanford, or to UCD, or to any university. And, truly, none of that matters, as I’m often struck by this simple truth: Jukie is the wisest person I know. He has many Life Lessons to teach the rest of us. His lessons aren’t taught at any school. Those who are privileged to know Jukie will learn just by spending time with my boy.
Start each day anew, with a clean slate. Jukie doesn’t know from grudges. He doesn’t hold onto anger. Of course, like the rest of us, he sometimes feels anger. And he has no problem communicating his anger. Occasionally, Jukie bites or pinches to show us his displeasure, usually over complying with a request from Mom or Dad. However, his anger subsides within seconds. He apologizes to us by grabbing our hands and giving us about ten kisses.
Judge not. Imagine a world where none of the “ism’s” existed. As far as I can tell, the only criterion that Jukie uses to judge a person is kindness.
If you’re happy and you know it, let everyone know. Jukie is pure joy. He couldn’t care less whether or not expressing his joy (loudly) is appropriate. When the boy is moved to laugh, he laughs uproariously. Soon, everyone around him joins in laughing; his bliss is infectious. And just try worrying about anything while you’re engaged in raucous laughter. Often when Jukie starts to laugh like that, I forget even what I had been doing.
It’s the little things. Jukie can spend hours examining the plants in our backyard. Through Jukie’s eyes, I see the beauty in each jasmine flower. Lying on our backs on Jukie’s trampoline, Jukie and I notice the pattern of clouds above. Through Jukie’s delight, I remember the thrill of spinning on a tire swing. As he plays with my wedding rings, I take a moment to recall the day I got married, and kiss the top of Jukie’s sweet head. (I had no idea what life held all those years ago.)
Slow down. Everyone who knows Jukie knows how fast he is – the boy can RUN. But he has another speed. When he’s focused on the minute details of his world, his movement comes to a near halt. As I’m frantically doing dishes and laundry and cooking dinner, I often look out to the backyard to find Jukie sitting quietly, thinking. When I’m able, I follow Jukie’s lead and slow down. When his sister was a toddler, she used to say, “Mommy, let’s be. Let’s just BE.” Jukie reminds me to just be.
Words are overrated. Although Jukie has made great strides using his Picture Exchange Communication System, most of our communication takes place intuitively. Expert at sensing the feelings of others around him, Jukie usually knows exactly what’s going on. If the mood in the room is tense, Jukie will start to cry. If those around him are content, Jukie feels content. He is like a human barometer. Other than asking him to stop doing half the stuff he’s doing, and trying to get him to do what we want him to do, we mostly communicate our love and affection to and for Jukie. Certainly no child has ever received more hugs and kisses than he.
Expose yourself. Those who know Jukie know that he routinely exposes himself in a multitude of ways. Although he knows the rules dictate otherwise, Jukie enjoys taking off all of his clothes. He removes his pants any time he feels like it. Fortunately, his brother and sister police this behavior. “Jukie, put your pants back on” is overheard frequently in our backyard. Lately, though, I’ve been thinking about the way in which Jukie has exposed himself to us on a deeper level. Because Jukie wears no social mask, neither do the rest of us. When we are with our boy, all eyes look our way. I have learned the liberation that comes from dispensing with one’s public face. Once that fa├žade is removed, we’re left without pretense. I no longer try to appear to be ANYthing. Why bother? I sometimes feel like Jukie and I are saying, “here I am, world!”
Never pass an opportunity to dance. Like the rest of us, Jukie hears music in his head. The difference is that he acts on it. There’s no stopping Jukie when he is moved to dance or to spin or to jump. Seeing the joy in his face, no one would want to stop him. Anyone traveling through Davis may encounter a cute little redhead and his mom dancing around the parks.
The White House belongs to everyone. For the most part, Jukie is met with kindness and interest by strangers he encounters. However, sometimes, I get the feeling that people wish a kid like Jukie weren’t taken everywhere. We’ve gotten the “look” at the movie theater, art galleries and restaurants. And this is where the mama bear in me rises up. Jukie has the right to go anywhere the rest of us go. Surprisingly, he often behaves better than other kids. A while back, while visiting Washington DC, my own daughter suggested that Jukie might not be allowed to enter The White House, asking, “Mom is Jukie allowed in The White House??” Pretending that I didn’t know why she was concerned, I responded, “why not – they have his social security number, just like the rest of us.” If I were to keep Jukie out of any potentially challenging situation, he’d never go anywhere. How will he learn to behave appropriately if not given the chance? And how will those who are not fortunate enough to know a kid like Jukie learn to appreciate him and others like him? (For the record, Jukie did pull a few Jukie-stunts in George Bush’s White House. I’m sure he’d have been much better behaved had we visited during Obama’s tenure.)
Take care of each other. Because Jukie needs more care than most, Jukie’s brother and sister are learning an invaluable lesson – that we all take care of and look out for one another. They learn kindness and empathy way beyond their years. Such a gift.
Other obligations can wait when there’s fun to be had. Just when I think I know how I am going to spend my morning, Jukie will grab my hand and drag me in the other direction. Jukie is always in the moment. And, I never, ever regret following him.
Life is about love. A great misconception about people with autism is that they don’t connect with others. In truth, they do connect; it just looks different. And, if fact, Jukie’s single greatest goal each day is to be with the people he loves. He kisses our arms and stomachs constantly. He wants to be held and tickled. As I tuck him in bed each night, the sweetest part of my day, he pulls me close, grabs my arms, wrapping them around him. Kissing his sweet, soft cheek, I silently thank him for everything he gave me that day.

Tuesday, March 30, 2010

No Small Victory

Often my life feels like a series of small victories. Mothering three young children requires a lot of negotiations. And while I hope for win/win scenarios where the kids and I feel equally satisfied with the various outcomes of these negotiations, in the end, I’m still looking for victories. One of the nicest benefits of 12 years of Mom-experience is that I’ve learned which battles to pick, and what’s truly important.

As soon as the alarm sounds (usually in the form of four-year-old Truman climbing in bed next to me, laying his hand on my cheek and whispering, “Mommy, are you awake?”), the quest for victory begins. We start with the three kids to get out the door to three different schools at three different times. I cross my fingers that picking out their clothes will be smooth. It seems that Truman only wants to wear STRIPES, and of course no stripped clothes are clean! “Maybe just for today, you can wear a dump truck shirt,” I offer. Geneva, who is 12 years old, has an aversion to most socks; they never feel good on her feet. So, I hope that each morning her socks will go on her feet without my hearing about it. And as a family, we negotiate with and overcome these sorts of obstacles all day long. What? Truman thought that it was HIS turn to close the garage door? More negotiations ensue. Next time, Little Man. What? You don’t have to go to the bathroom? Well, we’re going on a three-hour car trip, so how about you get in there and use the potty anyway.

Of course, I’ve learned the fine art of giving the kids the illusion of choice. When they’re young, it’s, “do you want to drink from a blue cup or a red cup?” Either way, they’re drinking what I’ve chosen. With the oldest, it’s, “would you like a sleepover Friday or Saturday night?” The goal was one sleepover night, not two, as would otherwise have been requested.

And with my sweet, special Jukie, victories are non-stop. Much of my time with Jukie involves my simply trying to control the chaos while allowing him as much freedom as possible. We’ve put a lot of thought and energy into exploring how we as a family can coexist happily, with as many win/win outcomes as possible. And when I’m on Jukie-duty, the negotiations are active and constant. As a result, I rarely sit down at home. Who needs a gym?

Perhaps these constant tiny battles prepare me well for the big ones. A few weeks ago, I went to war against Jukie’s county regional center (Alta California Regional Center). As you may know, in California budgets everywhere are depleted, so perhaps we should not have been surprised when Alta informed us that they would no longer be funding Jukie’s Care Trak monitoring system. This system involves an ankle bracelet which emits a radio signal so that Jukie could be tracked by the local police department everywhere he goes should he escape again. Because Jukie has a history of running away, this anklet is vitally important to his well-being. After telling us that they were planning to cancel support for the program (which a local activist and Mom raised the money to initiate), Alta offered a series of silly compensatory suggestions: that we install an elevated lock on the front door, that we try “behavior modification,” and that we employ “direct supervision.” Gee, why didn’t WE think of any of these helpful hints?! I hope my sarcasm is evident. Anyone who has ever met Jukie for five minutes would have been able to assess Jukie’s skill at climbing and at defeating that front door lock tactic (as he began to do in preschool). And behavior modification? We’ve been modifying Jukie’s behavior with the help of every professional we can get our hands on for nine years now. Alta’s suggestion that “there is no substitute for direct supervision” felt like an especially cruel joke. My response to them was, “we are HUMAN. We do require sleep each night!” Of course, we directly supervise our boy every minute of the day! He even sleeps with a night-vision video monitor on his bed. With all of our vigilance, Jukie has still escaped – twice!

Round one: my husband Andy and I met with Alta representatives for an “informal meeting” to try to come to a resolution without involving the courts. Because we believed that Alta would listen to our reasonable argument, that the agency should continue to fund the monthly cost of replacing the batteries and straps on his ankle bracelet, we agreed to this meeting. That’s not a mistake I’d make twice. Alta’s legal consultant sat in and acted as judge, an “impartial arbiter” I think she called herself. Huh. This didn’t bode well, but the woman seemed friendly enough. We brought with us the coordinator of the Care Trak Program, a wonderful police officer named Michele. Along with us, she spoke of the necessity of Care Trak, and demonstrated the pings coming from her monitoring device, which belong solely to Jukie. Did I mention that we brought Jukie? If the Alta folks were to understand our argument, they’d need to see and meet Jukie. Surely, they’d conclude that he needed to continue to be monitored through the Care Trak. The meeting took about an hour, during which time Jukie ran around in circles, tried to climb the blinds, untied everyone’s shoelaces, tried to escape the room, and ate from the trashcan. You GO, Jukie! Show them what'cha got! And let them see what a precious little boy you are, so worthy of tracking.

As we left the building that day, I said to Andy and to our trusty police officer, “I’d be shocked if they didn’t rule in our favor.” One week later, we heard Alta’s decision. They did not rule in our favor. Did we still want to pursue this, they asked? I imagine that at this point many parents would quite understandably give up. These sorts of battles require large amounts of time, energy and perseverance. Taking the matter to court before a judge can feel incredibly intimidating. Did I want to pursue the matter? Absolutely! Pursue!

Round two: once again, Andy, Jukie, our police officer and I reconvened, this time, sworn in, speaking into microphones, and before a judge. To our surprise, our Alta opposition this time was lead by that former “friendly” and “impartial” legal consultant. Now she is acting as prosecutor, using against us every argument we made at our “informal” meeting. Andy and I have no law background (unless you count watching an occasional trial – hello OJ – on TV). We had thought we’d just be explaining ourselves directly to a judge. Instead, we found that our hearing would be conducted like a real court case, which, I guess it was. Opening statements! Called witnesses! Cross examinations! Objections! Quickly realizing that Andy and I were out of our comfort zone (not to mention our league), we decided to step up and act the part. “How about I play lawyer, and you play witness,” Andy whispered. Fortunately, Andy is a seasoned public speaker, quite used to running meetings. And of course I knew the ins and outs of our case. We could do it. While Alta was presenting their case against us, I feverishly wrote down a long list of questions for my husband/lawyer to ask me.

Alta began making the case that because Jukie wears a MedicAlert bracelet, funding the Care Trak monitoring system would be a duplication of services. Again, we heard about the importance of direct supervision. Our “friendly” prosecutor pointed out that I had turned down a referral for behavior modification, which she somehow made sound terribly irresponsible of me. We couldn’t wait for our turn to speak! Soon enough, Andy was cross-examining Alta with fabulous questions, such as, “is Jukie wearing a MedicAlert bracelet right now?” They couldn’t say, for as the woman from Alta was forced to admit, she could not see the bracelet under Jukie’s sleeve. “If you saw Jukie sitting quietly, playing alone in the sand at a park, would you know immediately that he needed intervention?” he asked. “No,” she admitted, she would not. Sitting alone, playing quietly in the sand is exactly what Jukie was doing when he was found after he climbed our fence and ran a mile away to a favorite park.

When it was our turn to testify, I pointed out that the MedicAlert bracelet kicks in when Jukie is found. The Care Trak anklet is activated the moment he is lost. Jukie doesn’t speak. He doesn’t fear traffic or people or most any other danger he should. I told the judge that Jukie had proven his own case. He had already demonstrated the importance of tracking him. There was much more to our argument that I won’t go into here. His police officer testified again. The whole case went on for over two hours.

A funny thing happened when we left the court that day. I felt exuberant. Whatever happened, we felt as if we had already won. Andy and I came together over yet another (unexpected) bonding experience. We ultimately enjoyed “playing lawyer” by reading each other’s minds to make up for the absence of preparation (22 years together helps), and using each other’s strengths. We stood up for (and WITH) Jukie and for all of the children in the county who use the Care Trak system.

As I walked into the post office the other day, I knew that the certified letter waiting there must be from the court. Letter in hand, I ran back to my bike and decided to wait to open it until I arrived home. But, I didn’t make it home; I couldn’t wait. Instead, I stopped at a bench on the greenbelt and ripped open the envelope. The first words I saw were, “claimant’s appeal is GRANTED.” We won. Jukie won. Yes, precious boy, you won. You are so worthy of tracking. I will follow you everywhere.

Tuesday, February 16, 2010

SuperSibs

Soon after Jukie’s diagnosis with Smith-Lemli-Opitz Syndrome, someone close to me said, “you’ll need to watch that Geneva doesn’t get overlooked,” a common concern in families with children with disabilities. I hadn’t yet thought about how life with Jukie would impact his sister; we were still reeling from the news. Of course, all sorts of concerns regarding the “typical” siblings are warranted. Siblings may receive less time and attention from parents overwhelmed by the needs of the child with the disability. Often siblings assume a prematurely adult role in their family. And then they often must take on additional responsibilities as sibling advocates and disability educators.

I can’t say that I haven’t felt these expected concerns about Jukie’s siblings, but I am also keenly aware of the benefits that my “typical” kids realize from having a special brother like Jukie. Jukie has an older sister named Geneva and a younger brother named Truman. One (probably both) is a genetic carrier, but neither was born with SLO Syndrome. They have learned important lessons, and are sometimes asked to do more for the family than are their friends, but one thing these “bookend” kids will never be is overlooked. Because of Jukie’s needs, Geneva and Truman are required to have more patience, sympathy and tolerance than most kids towards their siblings. It is because of this requirement that Geneva and Truman have a deep sense of empathy for others. Jukie schools the bookends, and our bookends are great students.

Of course, my husband Andy and I have schooled the kids as well, buying them books about having a sibling with a disability. Geneva especially devoured them. Some of her favorites are:

The Sibling Slam Book: What It's Really Like To Have A Brother Or Sister With Special Needs, and Views from Our Shoes: Growing Up With a Brother or Sister With Special Needs, both by Don Meyer

Everybody Is Different: A Book for Young People Who Have Brothers or Sisters with Autism, by Fiona Bleach

Rules, by Cynthia Lord

And the kids watch their dad and me field questions about their brother. Every time I answer a stranger’s inquiry regarding Jukie, my response is geared as much for Geneva and Truman as it is for the person asking the question. What a joy it is now to hear Geneva as she steps up as an unofficial ambassador for people with disabilities, for she knows and asserts that disability is natural. I have heard her explain that Jukie is not SLO. He was born with SLO. He is not autistic. He has autism. She knows that Jukie is not his diagnosis. He is a person first. Geneva effectively reframes the conversations so that others come to understand that Jukie is first and foremost just a kid like any other.

As much as I love to connect with other parents of kids with disabilities, so too does Geneva bond with other kids with special siblings (we call such young caretakers Super Siblings). She truly identifies as a “SuperSib,” and enjoys meeting with and talking with other kids like her. They can swap stories about ways that their siblings have embarrassed them (such as the time Jukie came down the stairs and into the living room full of Geneva’s sleepover buddies… without his PANTS). Knowing how important the adult version of these friendships is to me, I am truly grateful that my daughter has also formed such friendships. Last summer, Geneva and I traveled to Boston to attend the biannual conference on SLO. The SuperSibs bonded instantly. Perhaps most heartwarming for me was watching Geneva’s eyes light up as she knelt down to talk with the kids with SLO, all of them reminding her of Jukie. Soon she and the other siblings were spending hours in the hotel pool, holding their breath together underwater, and coming up for air when they could no longer keep from giggling. I loved to see Geneva and her friends pal around the conference hotel like they owned it, taking turns hanging out in each other’s rooms, painting each other’s nails, folding origami and drawing silly cartoons. Geneva experienced the powerful feeling of connectedness when talking with people who know, who truly know our experience.

Sure there are a lot of hard parts of having a sibling like our sweet Jukie. It’s not that life doesn’t suck sometimes. I want my kids to be able to express all of the ways that Jukie frustrates and angers them. Those feeling are all inevitable and understandable. And I suppose that we could focus on the challenging parts of this journey. But we’ve made a different choice. We talk about the negatives, but then move on to the joy. In the presence of a heart (and face) like Jukie’s, how could we not?

The upsides of having Jukie for a brother are many. His siblings are required to find within themselves patience, compassion and understanding well beyond their years. When Jukie breaks or slobbers on four-year-old brother Truman’s toys, big sister Geneva sometimes intervenes, reminding Truman of Jukie’s intention. “Jukie didn’t mean to break your toy; he was only trying to see how it worked,” she’ll say to Truman. When Jukie bit Geneva hard on the stomach, Geneva pointed out to her pediatrician that Jukie got overexcited from the music Geneva was playing. Early on, Geneva learned to see the world through Jukie’s eyes.

Once when Geneva was ten years old, I picked her up from rehearsal for her performance as a cat in the Nutcracker. Her eyes were red and fiery. She was shaking. When I asked her what happened, she explained that one group of ballerinas had been calling the toy soldiers (all boys) names and degrading boys as a gender. Well, Geneva was outraged! She stood up and told the entire group of her peers that this was unacceptable. I asked her if she had been scared. “Of COURSE! But I HAD to say something!!” she said. Another time, while eating lunch at school, she heard some kids using the “R” word. My girl is so sensitive that she ran to the bathroom and cried, trying to summon the courage to go back and set these boys straight. Her friends came to her aid, and as a group they went back to address the matter. That is MY GIRL! Just about nothing could bring me more pride.

I can’t imagine a greater gift for Jukie to give his brother and sister (and Daddy and Mommy) than this gift of perspective, this deep sense of empathy and social justice that we carry out of our house and into the world. Jukie’s love and wisdom spreads far and wide.

Wednesday, February 10, 2010

A Valentine

I have a secret weapon. He is known in our college town as “Dr. Andy.” Just about everyone I meet seems to know him. Substitute “Dr. Andy” for “Kevin Bacon” and “Davis” for “Hollywood”, and it’s more like two degrees of separation. Life with a local celebrity is never boring and most always entertaining. But what I love most about watching Andy be “Dr. Andy” around town is knowing that he comes home with me.

A while back, I came across a divorce statistic of parents of kids with disabilities -- somewhere around 85%. Imagining why the rate is higher than average isn’t difficult. A strong, healthy marriage is vital when you have a child like our Jukie. We need,
need each other. Our family dynamic and stress strengthen our bond. Disabilityscoop reports a study published in the Journal of Autism and Developmental Disorders that mothers of children with autism experience a level of chronic stress so high as to be comparable to the level of stress combat soldiers experience. This level of daily, cumulative stress affects just about every area of health and life.

In our family, we don’t even bother with modesty when we call what we do with our son Jukie: Superhero Parenting. Jukie’s brother and sister are likewise superhero siblings. As Geneva says, “we’re like the Incredibles!” Of course, this developed through necessity, rather than by design or from a radiation experiment gone awry. Families like ours have to be stronger and work together. Maybe that’s why Andy’s “Dr. Andy” persona cracks me up so much. It’s fitting that he would be known and loved everywhere he goes in Davis. I swear, he may as well wear a cape. And when he walks in the door of our home… that’s when the fun truly begins. The magic he works with Jukie is just that good. No one makes Jukie laugh harder or behave better than his daddy, the Jukie Whisperer.

Although he bristles at the description, I am, in fact, married to a nearly perfect husband. Sure, he’s a human being with flaws (and even his flaws are minor). But as a husband, Dr. Andy gets an A+ from me. And I ought to know, right?

So how does he earn this distinction? From the day we met 22 years ago, Andy has supported my hopes and dreams. He told me that he wanted me on this life-journey with him, but allowed me a little space and time to catch up to his wise view of our future together. Anything that is truly important to me is therefore important to him. Andy tries each day to make my life easier. He does this in all sorts of small ways: making sure I catch a little more sleep in the morning, bringing me a glass of water each night, or encouraging me to spend time with my girlfriends. If everyone in the world treated others as Andy treats me, the world would be in damn good shape. It adds up to one fabulous life with my super heroic husband.

On this, our 22nd Valentine’s Day together, I wish to thank my wonderful valentine for all that he does for and with me and our three children.

Saturday, January 9, 2010

Birthday Boy

My little Jukie had a birthday this week. He turned nine years old. And everyone who I tell responds the same way: “NINE?? That’s so hard to believe.” To some extent, every mom hears those comments about her children; the time flies. But, as with everything else with Jukie, each birthday in this case is a little extra special.

First, there’s his size. Like all of his fellow buds with Smith-Lemli-Opitz Syndrome, Jukie is small, about the size of a five or six year-old boy. Strangers inquire all the time about his age. I guess they’re mostly trying to make sense of the sweet, unusual sight in front of them – a silly, impetuous, (ch)imp, with a shock of red hair, and a big red chewy sticking out of his mouth. “He’s nine,” I’ll now say, and watch the inquiring minds and eyes widen. The size gap between my boys (Truman, four and a half years younger) narrows each year.

I used to get depressed with each of Jukie’s birthdays. With each passing year came a reminder of the many milestones he wasn’t reaching. He didn’t have friends. Finding appropriate gifts for him has always been difficult. What do you get the boy who doesn’t really play with toys, except to break or eat them? And as birthdays never really held meaning for him, he never had a traditional birthday party. To me his birthdays didn’t seem like occasions for celebration.

Fortunately for Jukie, I’ve evolved. I’ve come to realize that children’s birthdays are also reasons for parents to celebrate. I celebrate how far we as his parents have come, and that we have survived another year with our boy. I focus on Jukie’s many strengths, on what he can do, and not just on the ways he struggles. I also see how far Jukie has come! His development is so incrementally slow that I sometimes have to step back to examine his growth. Visiting friends and family who haven’t seen Jukie for a year or more point out (sometimes with surprise or relief) those emerging strengths of Jukie’s that are sometimes hard for me to recognize. Over the last two years, he has become much more calm. He can now sit for long periods of focused time. He communicates well with PECS (Picture Exchange Communication System). He’s more engaged and responsive with us. Perhaps it sounds funny, but Jukie can be a well-behaved boy! We take him to restaurants, art galleries, concerts, movies, on airplanes… and he usually tries to behave well everywhere we go. He’s more fun than ever! And with his new habit of making kissing sounds when he waves hello and goodbye, he gets impossibly sweeter every day.

And so this last birthday was cause for great celebration. We doted on the boy all day long. Whereas he normally may average 25 Mommy kisses in a day, on his birthday he received probably 200. We served him his favorite foods: tofu with cornbread for dessert. We gave him new beloved toys which spin and make noise. And I thought to myself that all of the reasons that I used to get depressed don’t matter at all to Jukie. He already knew these lessons, the lessons which took his mommy nine years to learn.

Happy birthday, sweet, sweet Jukie! I am so lucky to be your mom.