Sacred Classrooms

This morning I sent my three children off to their three different schools. As I suspect every parent across America did, I kissed each of them a few extra times and hugged them longer and harder than on other mornings. Usually, I yell, “I love you – have a wonderful day…!” as they run or bike away from me. Today, I could hardly let go of my tight grip on their arms as I paused for eye contact, this time saying, “do you know how much I love you?” This morning wasn’t like other mornings, for this country seems to have forever changed since 20 impossibly beautiful and innocent six and seven year-old children were slaughtered last Friday in their first grade classroom, a sacred place. Six heroic educators died trying to shield the children.

My youngest child (Truman) is a first-grader who attends a two-classroom K-3 school also located in an idyllic country setting. Truman turned seven in September. Last week, he finally lost that pesky front tooth which had been hanging on too long. Now he has that incredibly cute toothless gap which symbolizes first grade and, for me, has always represented the sweet innocence of the age. He believes in Santa and the Tooth Fairy. Other than the occasional conflict over Legos, he knows only peace and love in the world. As Andy and I discussed and debated how to approach our children with the news of Newtown, CT, we could not imagine telling our boy that other first-graders were not safe in their classrooms. I remembered a conversation with Truman last summer as I was prepping him for a PG rated animated film with some “bad guys.” Wondering whether the movie would feel too scary for him to see, I said to him, “you know that all of the bad guys are only pretend….” He interrupted me with, “of course I do, Mommy – bad guys aren’t real; they don’t really exist!” Had I been prepared for that response, I might have handled it differently. His innocence stunned and momentarily threw me. We were driving. I said nothing.

My middle child, Jukie is 11 years old. I hope that he will only ever know peace and love in the world. Living always in the moment, Jukie loves and trusts everyone. Today, I am grateful to know his world. When I spend time with Jukie, I enter his reality. I lie in the backyard with him and watch the wind blow the leaves in the trees. I go through our routine of things-that-make-Jukie-laugh and watch him fall over with infectious Jukie giggles. I spin him on the tire swing. We sit and look eye to eye. I wonder what he is thinking and imagine that he is wondering the same about me. I will never have to tell him anything of the tragic events of last week.

 Geneva, my oldest, is a sweet and thoughtful 15 year-old who currently straddles childhood and adulthood with tremendous grace. Sometimes I step back and watch her interact with others, marveling at the mature, composed young woman I see. Other times I find myself attending to grass stains on the knees of her jeans. As she is our firstborn, she is the child with whom we tried to get everything with parenthood “right.” We protected her innocence by limiting media exposure and other worldly influences. We protected her little body by giving her only healthy food. I recall even feeling a bit wistful at the introduction of solid foods at the age of six months, for she had been exclusively breastfed until that point. I realized that I wasn’t always going to be able to control everything she ate. When she was in 2^nd grade she once asked me, “Mommy, have you ever used a curse word around me? And was I adjacent to you when you did?” Of course I remember this conversation perfectly, in part because I have been repeating and laughing about it ever since, and partly because those who know me well found this question a bit surprising. My brother jokingly commented at the time, “wow – she doesn’t really know you at ALL, does she?” All of this shielding came from wanting to believe that I could protect her from the world even as I knew I could not.

While our family stayed away from stories and images from Newtown, CT over the weekend, I did watch the memorial service at which President Obama spoke. I think he spoke for every parent when he said:

You know, someone once described the joy and anxiety of parenthood as the equivalent of having your heart outside of your body all the time, walking around …With their very first cry, this most precious, vital part of ourselves, our child, is suddenly exposed to the world, to possible mishap or malice, and every parent knows there’s nothing we will not do to shield our children from harm. And yet we also know that with that child’s very first step and each step after that, they are separating from us, that we won’t – that we can’t always be there for them.

As much as I would like to believe in the illusion that I can keep my children safe at all times, I must admit that I can’t always protect them. We parents cannot hold on so tightly that we don’t allow our kids to go experience the world. Our job, after all is to provide a solid foundation of love, nurturance and protection when our children are young so that they grow into competent, capable and independent young adults… who leave us -- one of life’s greatest ironies.

It so happened that before Geneva arrived home from school last Friday, she had heard about the shootings from a friend. Neither she nor I had discussed it with one another, each attempting to protect the other. Two days passed before I realized that she had already heard the terrible news. Truman knows nothing of the tragic event, and I have no plans to tell him. I will cross my fingers that he doesn’t hear it from a classmate. Jukie will continue to hop on the school bus each morning, happily oblivious to any potential dangers in the world. I will remind myself that the world is filled with love and beauty, that violence is the exception, and that I am doing my best to raise kind and generous children whose existence makes the world a better place.

Voice Lessons

"You gain strength, courage and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I have lived through this horror. I can take the next thing that comes along.' You must do the thing you think you cannot do. "

~ Eleanor Roosevelt

"Decide that you want it more than you are afraid of it."

~ Bill Cosby

Eleanor Roosevelt knew something about fear. Although she lived a remarkable life as an outspoken First Lady of the United States and great humanitarian, later serving as the chair of the United Nations Human Rights Commission, she began life as an extremely quiet, sensitive child. And perhaps in part due to her difficult childhood (she was orphaned by the age of ten), she learned that “fear is something to be moved through,” as she famously said.

Like just about anyone who reads anything about E.R., I’ve always had great respect and even a certain about of awe for this remarkable, trail blazing woman who cared deeply about social justice and worked to improve the lives of the underprivileged throughout her own life. She found the strength to live a life truly “before her time” with grit and tenacity, overcoming the betrayal and later death of her husband and a lifetime of depression.

When I was a young woman facing daunting choices such as moving to Europe by myself (in an era before cell phones and social media), or leaving my friends and family in the Midwest to follow my heart to California, I always thought of Eleanor. In her writings and the way in which she lived her life, she taught us her “secret”: fears are to be faced head on – be afraid, but do it anyway.

Every one of us is afraid to do something. Childhood in particular can feel like a scary time as kids are regularly asked to do things that frighten them, like walk into an unfamiliar classroom, dunk their heads under water, or ride their bikes for the first time with the training wheels removed. While most adults forget how it feels to be outside our comfort zones, children live outside their comfort zones throughout their childhoods. As parents, we seek to protect our children, for we mommies suffer whenever any of our children suffer. Mommies would rather shoulder their children’s burdens, shield them from their fears, and solve their problems. I made such a mistake as I tried to help my son Truman with his paralyzing fear: speaking. Mostly, I spoke for him when he was unable.  

But that’s not what Eleanor advised. She did not say, you must have your mommy do the thing you think you cannot do. She did not say that you must have your mommy look your fear in the face! That sounds ridiculous, but don’t we sometimes err when we try to “help” our kids avoid the hard stuff?

Last summer, as Truman contemplated his quiet, limited world with Selective Mutism, I started to see signs that he was ready to challenge himself, to work on facing his greatest fears. He started experimenting with talking to adults he didn’t know (which was, perhaps surprisingly, easier than talking to those he knew). He began “slipping” and occasionally blurting out an excited utterance: “Whoa!” And most of all, Truman told us how much he wanted to be able to talk, to be free of his fear. Soon Truman’s desire to talk grew stronger than his fear of talking.  

While attending Camp Courageous, a summer camp designed for kids with Selective Mutism, Truman spent just one fairy-tale week practicing interacting with other kids and adults, ordering at restaurants, speaking to the woman cutting his hair, chatting with the man ringing up our groceries and taking advantage of every other opportunity that arose. I watched his confidence grow with each successful attempt. He would tell me, “all the kids at camp have my problem! They’re just like me!” His camp therapists gently prodded the kids through their speaking exposures with such a sense of fun and joy that the kids sometimes forgot they were afraid. And then they talked.

Truman and I spent the remainder of the summer practicing his new skills and talking a lot about fear and courage. Truman defines courage as, “being afraid and doing it anyway.” My brave kid began the summer a silent kindergartner and ended it a LOUD, confident first grader. As I picked him up from his first day of school, a fellow classmate came up to me and said, “Truman is now the loudest kid in the class!”

After spending most of his six years watchful and silent with nearly every adult he encountered, Truman recently declared, “I’m over my ‘talking problem’!” I would call the recovery of his voice a miracle - and I have certainly wished for such a miracle - but all of the credit belongs to a brave boy named Truman, a boy who speaks freely. Each Friday, as I work in Truman’s classroom, I watch him speak without hesitation, even raising his hand to speak! Last week, he blurted out, out of turn and then sheepishly glanced my direction. I gave him a misty-eyed wink. And he gave me a slight, knowing nod.

Silent Strength

Today I had one of those moments every mommy dreads. I took my six year-old son, Truman, to camp and left him watching me with all the stoicism he could muster. I don’t think he bought my confident façade, and I caught a glimpse of his lower lip trembling, thus betraying his own brave veneer.


Truman struggles with a form of social anxiety called Selective Mutism.  That means he finds it nearly impossible to speak to people he doesn’t know.  People often confuse SM with shyness, though they are not the same.  One might describe SM as shyness on steroids. Someone with SM has a true phobia of speaking; s/he does not willfully refuse to speak. And while people often outgrow shyness, those with SM need treatment to overcome their anxiety and learn to speak in any environment or circumstance.  As is typical of kids with SM, when Truman is at ease in the company of family and friends, he speaks, yells, and carries on in all sorts of silly ways, just as any other child would. In fact, if one were to observe Truman playing with close friends, you would never guess that the confident, LOUD boy directing his friends’ play, shouting, “you and I can both play 'kings' and this whole yard is our kingdom,” cannot bring himself to even whisper when he is in a less familiar environment or even in his own school classroom. So even though Truman often gets corrected for yelling too much at his school picnic tables over lunch, he typically will not say a single word in the classroom to his teacher or to most of his peers – that is, until recess with his three good buddies when he lets all of his pent-up speech FLY out of his mouth as if to say, “I do have a voice! And I will use it! Hear me NOW!”  Truman desperately wants to speak freely, telling me, "I always talk in my dreams."  

Since I have always been drawn to psychology, I have spent years thinking about the causes of my boy’s SM.  And I’m convinced that Truman is experiencing the “perfect storm” of circumstances which likely contribute to and cause this anxiety. 

Truman’s older brother, Jukie cannot speak.  What must it feel like to live with a big brother who is unable to talk?  Although I expected Truman to grow up accepting Jukie just as he is, instead Truman regularly asks many questions about Jukie: “What is Jukie thinking?” “How does Jukie feel when he wants something and we don’t know what that is?” “Why can’t Jukie talk?” Those are all questions that I have been answering for years and for which no answers truly exist. Surely, part of Truman wishes for some of the perceived attention silent Jukie receives. And perhaps this unconscious competition is what sibling rivalry looks like in our family.

Clearly, selective mutism is hard-wired into one’s DNA. Interestingly, many people with Smith-Lemli-Opitz Syndrome who are able to speak also struggle with SM. Like his daddy and me, Truman is a carrier of the SLOS mutation. Researchers are only just beginning to learn ways in which carriers of the syndrome may be impacted in similar ways to those born with the syndrome. We SLO parents have often noted that our children who are carriers are almost as similar to each other’s carrier children as our kids with SLO are to each other.

Truman comes from a long line of anxious people. (Then again, who doesn’t?) Helping my kids learn to manage their feelings and anxiety is something I have been doing for fourteen years. By happy chance, I have had plenty of practice in handling my own anxiety. How fortunate! 

And so today begins Day One of Camp Courageous, a summer camp designed specifically for kids with SM. Even though a big part of Truman was excited to attend a fun summer camp, he had trouble sleeping last night and also told me during our long drive this morning that his tummy hurt. He said, “maybe it would be better if I just stayed with you with my head in your lap.” Now this is a heart-melting request to any Mommy. But I assured him that I knew he could handle the day, and we walked toward the camp together.  He squeezed my hand extra tightly and paused to look at me before we entered the room. Neither of us said a word during that five-second pause. And then Truman stepped through the door, gently pulling me along with him. Saying goodbye felt a lot like dropping him off on his first day of kindergarten – a mixture of sadness, fear and excitement – for both child and parent.

Part of the art of mothering includes knowing when to give a child a gentle push into a situation that challenges him. I know that Truman needs not only to overcome his social anxiety, but also to feel the sense of mastery that accompanies such an accomplishment. I know that I can no longer speak for Truman. I know that he needs to find his own voice. I know that “protecting” him from this scary journey would also prevent him from tackling this challenge. And so I hugged my sweet boy goodbye, saving my few tears until I rounded the corner. 

I feel Truman’s bravery and confidence transferring to me this morning. If he can face this daunting week, then I can find the strength to let him go off into this arena without his Mommy. I excitedly look forward to Truman using his newfound voice, something I will absolutely never take for granted.

Forks and Curves

Life is full of forks. Yogi Berra famously said, “If you come to a fork in the road, take it.” I have always loved this quotation and use it for inspiration whenever I need to summon the courage required to take the leap of faith necessary to choose a dramatic new direction. Forks are fun. Forks are exciting.

It is life’s unexpected twists and turns that I find more difficult to navigate. Yet I have found that one of the secrets to happiness is learning to embrace these surprising twists that life brings. For years, I have had a recurring dream that I am driving on winding roads, lost and unaware of where each curve leads. Our family’s Master Teacher, Jukie, leads us down many an unchartered path as he shows us the blessings and the beauty to be found.

Our life twist this month transformed from the metaphorical to a literal reality as we listened to our 13-year-old daughter Geneva’s doctor explain that her spine had so severe a curve that she must wear a back brace 23 hours a day for the next three to five years, that is, until she finishes growing. The doctor said many encouraging words, advised her to continue living her life as close to normally as she had, although he advised against taking up any new sports. Upon hearing that Geneva is a black belt in Tae Kwon Do, he acknowledged that she might need to make some modifications in her spinning kicks, but she will find a way to keep doing what she loves. And when the doctor said that she’d be wearing the brace 23/7, he stressed that he didn’t mean 20 hours a day, or even 22 hours a day. Geneva is allowed freedom from the brace exactly one hour each day – for the rest of her childhood.

As the doctor left the office I watched Geneva take in this life-altering piece of news. She looked out the window, down at Sutter’s Fort, five stories below and remarked that she had loved the field trip she took there in 4^th grade. I thought about how much she has grown and matured in the four years since that field trip. We were quiet for a short while until she said, “it’ll be OK, Mommy…at least it’s not a corset.” My remarkable girl immediately considered how the situation could be worse. And throughout the month Geneva has commented that the brace “will become normal for (her),” and “just part of (her) daily routine.”

I marvel at Geneva’s ability to feel so sanguine in her response to this curve that life threw her way (while her mommy quietly freaks out in private). But it’s different for moms, isn’t it? We mothers often feel the pain of our children’s hardships more intensely than our kids do. I’ve run a support group for new moms for all of Geneva’s 13 years, and when those new mothers express a dread of the baby’s first shots, or dropping their child off at daycare for the first time, I usually say the same thing: “it’s usually harder on the mommies than the children.” Moms seem to be hard-wired with an intense empathy for their kids. We do not like to see them hurt. We can’t stand to see them suffer. We feel their pain more than we feel our own. And my own mother tells me that the feeling continues no matter the “child’s” age.

Looking at my daughter’s twisted spine X-ray absolutely breaks my mommy heart. I am struck by memories of watching the ultrasound images of her tiny spine when I was halfway through my pregnancy – so straight, so strong. I have been thinking about the endless hours I spent patting her sweet baby back throughout her colicky infancy. And I find that I’m drawn to her back since hearing the news; knowing that I soon won’t be able to rub or scratch her back, I try to get it all in now.

Fortunately, Geneva is an exceptionally resilient and confident girl who has always felt happy to be different from everyone else, even her closest friends. In preschool, when most of the girls dressed as fairies or princesses for Halloween, Geneva insisted on dressing as a painted bunting. Having reached an age when most kids are trying desperately to be and look like one another, she still says things like, “why would I want to be just like everybody else?” I am thankful that Geneva has the inner strength required to navigate these unexpected life curves. And I have no doubt that this experience will increase her confidence and shape my girl into the amazing young woman she becomes. Once again, my children show me the way. We love you so much, Geneva – and we’ve got your BACK!

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.”

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 7^th 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.

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.

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.”

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 façade 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.