Lucky Number Seven (Happy Birthday, Bunz!)

Today, my baby boy turns seven.

Seven!

Seven years.

Wow. I swear Bunz was just a baby, like a minute ago.

Random little things bring me back to the day he was born. The smell of medical adhesive tape. Extra-crisp apples. The traffic light at the corner of Cooks Lane and Edmonson.

The morning Bunz was born, my husband and I stepped through a doorway into a new world. We didn’t realize it immediately, but over time it became apparent that a profound change had taken place. As Bunz grew from an infant to a toddler to a child, my husband and I grew into new versions of ourselves. Kind of like those born-again Christians, but without the religion. Just regular born-again people.

The transformation looked a little like this:

Before

Before we had kids, we had a cat named Kitty Little. For the first 7 years of our married life, she was our baby. One morning I dropped her off at the vet, planning to pick her up that evening. Except! The vet called me around lunchtime to say that Kitty Little’s blood glucose level was a little off and she might have diabetes. Diabetes! I hung up in tears and left right away, jogging home to grab my car so that I could collect my sick kitty. How awful! Diabetes?! What could be worse??

During

The days and months after Bunz’ birth were kind of like the “during” phase. Bunz started having seizures a few hours after birth, and the long list of things that could possibly be wrong with him included viral infection, bacterial infection, lung injury, bleeding in his brain, stroke, hepatitis, genetic or metabolic abnormalities and some other things I can’t recall. He had two spinal taps and his IVs were loaded up with medications for every possible issue, until one by one those issues were ruled out and a brain MRI suggested he’d had a stroke.

During these first few days, I refused to stay in my hospital bed and kept trotting off to visit him. I had no patience for wheelchairs or rest and, as a result, ended up with a nurse of my very own. When my nurse asked what she could do for me, I very bluntly informed her that the only thing anyone could do was to make my baby ok. She couldn’t do that, and anyway Bunz had to transfer to a children’s hospital, so we left. As we drove behind Bunz’ fancy NICU-on-wheels to the new hospital, I realized for the first time that my belly was empty and so were my arms.

Ah… the “during” period was rough. So much anger, guilt, fear, shame, regret. How I wished sometimes that Bunz was a cat with diabetes!

After

But over the years, we’ve gradually entered an “after” period. Not in the sense that the hard stuff is over — there are still days dominated by fear, anger and frustration. There are still things to worry about, things to struggle with, things to fight for, things that are unfair. It’s not fair that Bunz has a standing request to wear headphones the next time he rides in an ambulance or that his younger brother, at age 5, already knows how to wait first for the fireman to come to the door, then the paramedic. It’s not fair that life is complicated for them.

But the “after” period is all about realizing that life in general is not fair, and that’s OK. Because that’s How It Is. Life is unfair in so many ways for so many people, and this just happens to be our own personal brand of unfairness. In our growing, our transformation, we’ve glimpsed a rawness to life that’s often overlooked when everything is safe and warm and okay. At first the rawness seemed tragic. But over time we’ve come to realize that the rawness is amazing and beautiful because it clarifies what’s truly important in life – not competence, not speed, not winning, not being right all the time or even being seen. What’s important is experiencing, surviving, loving. Before Bunz, my husband and I thought we knew love. We thought we understood what it meant to trust.  Turns out, we had no idea.

In the past seven years, we’ve felt like the most powerful versions of ourselves and the most powerless.

We can do nothing.

We can do anything.

He’s taught us so much.

1931086_820462434561_3479_nAnyway.

All of this is to say that today is Bunz’ seventh birthday and he could care less about how he’s inspired and transformed his family because there’s cake! And presents! He can hardly wait!

CakeSo without further delay,

Happy birthday, Bunz!!

😉

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What I want you to know about my child

My son, Bunz, does an awesome job of enjoying life while navigating two disabilities: cerebral palsy and epilepsy.

11782266_10107302601360151_1597732830068564588_oIn his 7 years on this planet, we’ve met with developmental pediatricians, neurologists, epileptologists, physiatrists, neuropsychologists, school specialists, physical therapists, occupational therapists, speech therapists, feeding therapists, gastroenterologists, therapeutic horses, aquatic therapists, music therapists, craniosacral therapists, myofascial therapists, chiropractors, Feldenkrais and Anat Baniel practitoners, surgeons, podiatrists and others to help him navigate these challenges.

They all ask the same thing: “What do you want me to know about your child?”

“What do you want me to know about your child?”

“What do you want me to know about your child?”

“What do you want me to know about your child?”

Well, what I really want you to know about my child is not relevant to the task at hand. But then again, maybe it is. It’s relevant to Bunz, after all. To his life and perspective and understanding of where he fits in this world.

Depending on how you think about it, What I Want You to Know About My Child may have nothing to do with the care you provide him in this moment. Or it may have everything to do with it.

Because what I want you to know is this:

That while my child fixates on your overgrown beard during our consultation, deep down he’s sensitive and he’s listening. To us. To all the things we’re saying – in front of him, right now – things he can do or can’t do, things he struggles with or finds challenging. I want you to know that when you say he has good muscle tone, he wears that routine observation like a badge of honor and asks me, on the way home, what it might mean. Whether there’s a shred of something to be proud of in those words. Because like all of us, he wants to be great. He wants to belong.

He wants to be enough.

I want you to know that some of the things you observe to be difficult for my child are the very things he’s worked hard to improve on for a year or sometimes more. And so I want to tell you – very quickly before you say anything to crush his sense of accomplishment – that he’s come a long way. Even though we all recognize he’s not there yet. Even though he might get there eventually, or he might not. But I want you to know that for kids like Bunz, the way from “here” to “there” is a progression of baby steps. And he is continually taking those steps.

I want you to know that even though we’re here to talk about all the things that are difficult for him, much of his life is spent being good at things. He’s good at math, reading and spelling, for example. He’s good at shaking hands with elderly people in nursing homes and looking into their eyes with a sincerity and warmth that belies his age. He gives amazing hugs and plays songs by ear. He’s good at remembering birthdays, noticing new haircuts and telling clever jokes. He’s good at making strangers laugh and bringing people together and diffusing tense situations. He has no ego and so he’s good at living his higher purpose.

I want you to know that whatever worked for the other kids probably won’t might not work for Bunz. It takes creativity, music and a bit of a smartass personality to get him on board with whatever program you have in mind. I know this complicates things. Bunz pushes all of us to rise to the challenge and I guarantee that if you can make this work, you’ll be a more resourceful practitioner for it.

I want you to know that Bunz will talk about you long after we get home. A LOT. Mostly he will ask us to invite you over for dinner and then insist that you move in. But sometimes he will inform us that you had food stuck in your teeth. I’m sorry in advance for those times.

And finally, I want you to know that this kid has big dreams. That the first few times he met children who were nonverbal, he was visibly and dramatically shaken – he wanted so badly to help those children speak. One night a few weeks ago, he announced in a sleepy voice that he wants to be a “speech teacher” so he can help his friend Ben and every child learn to speak. But also, he told me as he drifted off to sleep, he still really wants to be a policeman … and so maybe he’ll drive his police car fast to the school to teach those kids.

I want you to know these things so that we can help my son — and other kids like him — understand with certainty that their challenges don’t define them. That challenges evolve and change and sometimes even fade away, but character and strength remain.

I want you to know that my son is a character, for sure. But mostly, I want you to know that he is strong.

And he is Enough.

11856468_10107304729076191_7036420689511652211_o electroencephalograming #likeaboss

Why I believe these 10 people with #cerebralpalsy are exceptional

RFTS2014-Ribbon-StarAre you ready for this? In honor of March 25 – Cerebral Palsy Awareness Day – I’d like to introduce you to 10 exceptional kids who have redefined what it means to break down barriers. They’ve torn the dis from ability and kicked it to the side.

First, let’s get through the awareness part: Most people with cerebral palsy, or CP, had a brain injury before/during/soon after birth. Some had strokes. Some had traumatic births. For some, we’ll never know what happened.

The encouraging thing is that our brains are plastic, meaning that healthy areas can eventually compensate for damaged parts. The challenging thing is that no one can predict how that might play out. People with CP can have dramatically different outcomes. Some of the kids featured here aren’t yet speaking. Some aren’t walking. Yet. But remember the secret I shared with you? Yes. That. We all have that in common.

In the meantime, different families wait for different things. We’re waiting to see if Bunz will sleep in his own bed. Make friends. Outwit bullies. Go to college. Drive a car. Have his own place. Produce cute little grandbunnies who disregard authority. (He says that will happen when he’s 15. Hmm. Here’s hoping for 30!)

Despite all of this uncertainty, one thing is for sure: People with CP are exceptional.

In the words of a wise woman:

Some people might look at Bunz and say, ‘This kid is delayed, so he must not have a very good brain.’ But I would say that this kid has an exceptional brain because look! Even with all of his physical limitations, he has figured out how to walk and move and talk and communicate. That’s not easy to figure out, but he did it. And I’m not sure I would be able to achieve all of that if I had started life with the same limitations. So I would say that his brain is even more exceptional than ours.

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Without further delay, here are 10 of the most exceptional friends, neighbors, and heroes a boy could have. And a few words about their amazing moms, who will always be my personal heroes.

Happy CP Awareness Day, from Bunz!


Exceptional Kid #1: Ella, age 10

11079276_10205388305101561_2059614904_nThe first time our physical therapist said the words “cerebral palsy,” she told us about Ella. How Ella didn’t let anyone stop her. How Ella wanted to play the harp, so she did. Ella wanted to ride horses, so she did. It didn’t matter that it wasn’t easy. You want to do something? You do it. Period. Back then, Bunz was a baby and we weren’t sure what to expect. How fortunate we were to share a therapist with such a determined little girl! Hearing about Ella’s hard-won triumphs was exactly what we needed as we embarked on this journey. Her mom writes:

“Cerebral palsy has taught us a lot about 11072690_10205388304781553_1823093690_ntrust. We need to trust that Ella will push through difficulties. That she won’t see us as nagging therapists but as loving parents. That her challenges will become her strengths.

At age 10, she’s been riding horses for 8 years and playing the harp for 4. We’ve discovered a whole community of supportive people and a world that not only accommodates difference, but needs just the kind of difference Ella brings. We’d get rid of CP if we could, and sometimes it’s really tough, but sometimes it makes a space for joy and appreciation that simply couldn’t have existed otherwise.”


Exceptional Kid #2: Bennett, age 11

“Bennett has hemiplegic cerebral palsy from a stroke in utero. This year he tried trapeze on our family vacation and was thrilled to do his own style ‘one-armed monkey hang.’”

IMG_3548That’s from Bennett’s mom. Let me just tell you, that woman is fierce. We met about a year ago – she happened to be touring a school when I asked how many of the K-1 students had individual education programs (IEPs). The principal replied, “None. We don’t worry about IEPs until the second grade.” I paused for a second. Let that sink in. Rewound, just to be sure. Did he just say …? Early intervention actually exists, right? It’s a Thing? Or did I imagine it?

I’d been planning to say something else, but my mouth hung open in disbelief. Audrey came over and gently closed it, then handed me her phone number. I crossed that school off our list.

Audrey writes:

“Life with cerebral palsy is joyful, exhausting, fascinating, trying, and inspiring for all of us in Bennett’s life as we watch him meet each day’s challenge with determination.”


Exceptional Kid #3: Nolan, age 3

Oh! Now look at this charmer. This is Bunz’ “little bro,” Nolan.

IMG953136You’d never guess it now, but Nolan had no independent movement – not even rolling – until he was 18 months old. What changed that? The question you should be asking is who changed that. A lady named Anat Baniel. The lady behind the exceptional brain quote.

Her center in the San Francisco Bay area attracts families of kids with CP, autism, chronic pain, you name it – from all over the world. She also works with top athletes, musicians and dancers to hone their skills. A couple of years ago, we raised money to travel to the center for 2 weeks and we were blown away by Bunz’ progress.

Every few months, Nolan and his mom travel to the center from their home on the Oregon coast. The cost is exorbitant, but when you find a therapy that helps your child as much as ABM has helped Nolan, you find a way to make it work. His parents had a fundraiser last year and ISTG I would have dropped $1,000 in their pot if I’d had it available.

Here’s a recent photo of Nolan at the ABM center. The photo is a little dark, but can you see? He’s taking steps! Soon he’ll be an independent walker. And a smooth one, at that! That’s the power of ABM.

IMG953500Here’s what his mom wrote. She’s incredible, by the way. And also a supermodel.

“This road that we’re traveling is not what we imagined before our sweet little boy was born. It’s so much more difficult. To watch him work so hard to complete what seems like a simple movement, to devote all of our time and resources to cutting-edge therapy … but then again, our path is so much brighter than we imagined. We’ve learned lessons about life, about ourselves, about the people around us and the threads that make this world unique. Every new milestone that he reaches fills us with pride!”


Exceptional Kid #4: Julia, age 12

Here’s a beautiful sixth grader named Julia. I’m always struck by how thoughtful she is, and I don’t just mean that she’s kind. She’s a thinker. A musician. A beautiful person, inside and out. Really great kid.

Her mom sent a few photos, so you can see for yourself.The Kids Are Alright

Julia and Isaac, Service-Dog-in-Training and rascally best buddy. Julia says having a service dog is one of the perks of having CP. While having a service dog means Isaac can go everywhere with Julia, it also means years of training with your pup. Kind of like trying to tell your baby brother what to do! One of the perks of having CP, for sure, but also one of the challenges!

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Being a stroke survivor and a kid with CP means getting the chance to “Play Ball!” with her city’s Little League Challenger division. Meeting celebrities like Lou Seal is an extra perk!

When Julia, with very limited use of her right hand and arm said, “I would like to play the violin,” her parents got together with her orthotist and figured out a way to make that goal possible. Julia is still studying and is now preparing for her first solo recital.

Photo by Betsy Kershner, 2013.

Julia & Beau 1Julia is the tallest, fastest girl around while riding Beau, the adorable Clydesdale. Julia rides other amazing horses, and while this is a fun and challenging activity for Julia, for her parents, seeing Julia riding tall in the saddle is one of the most healing, joyful experiences ever.


Exceptional Kid #5: Enzo, age 5

Now, here’s a little boy who owns my heart. He holds the deed and everything.

I met Enzo when he was only a few weeks old; Bunz was about 1. His mom and I had connected through a traumatic birth workshop. Our birth stories were so similar and I remember how rock-bottom we both felt. Another woman was taking the workshop, too; she was recovering from the emotional trauma of an emergency c-section. Well, let me tell you – after hearing our stories, that lady was instantly healed. It was a miracle! The thing I love most about Rebecca is that even in our darkest days, we could look at each other and laugh when that lady high-tailed it out of the workshop. Enzo’s mom is my kind of friend. And when I look into Enzo’s brown eyes, I fall in love every time.

Now I know what pain is.

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Now I know what love is.

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Now I understand the meaning of acceptance.

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Exceptional “Kid” #6: Ashley, age 28

My favorite exceptional adult (and kid at heart) has a few words for Bunz and other kids with CP:

FB_IMG_1426901355436“My advice would be to never give up, even when it is bad. My parents were told I would never walk or talk. If you know me, this is not the case at all (haha). Just because a doctor says something is likely to happen, doesn’t mean it will. Every case of CP is unique.

Some people might assume that you are not smart. When I tell people I am getting my Master’s, the blank stares are kind of funny. There are good days, there are bad days – it’s all about how you react.You will come across a lot of ignorant people, but the goal is to not let them get to you. You can either let the world win or you can put up a fight.”

Ashley’s mom, Ms. Gigi, was Bunz’ first mainstream preschool teacher.  I remember dropping Bunz off on that first day and hearing another kid say, “He walks slow.” It hurt to hear that, but the kid was right. What came next, though, was totally awesome: Without even skipping a beat, Gigi responded, “Yes, but he’s a really great singer!”

I didn’t know it at the time, but Gigi and I have a lot in common. When I finally met her daughter, Ashley, I had to hold back tears because I’m so proud of her. She really is incredible. Before we met, I didn’t dare hope that Bunz would attend college. Now I’m hopeful. We are beyond grateful for the wisdom they share.

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Exceptional Kid #7: Malia, age 9

Here’s another young woman, Malia, who attends a peer group for kids with CP that we were once part of. I love this group because until we attended our first meeting, it seemed like we were the only ones dealing with the challenges of CP. And then we walked in and saw our family multiplied by 10. It was such a beautiful thing.

Malia’s mom sent a few photos for us to admire:

Our happy angel

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Progress:  Malia could not stick her tongue out before – now she’s sticking it out there!

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Exceptional Kid #8: Lily, age 13

Here’s Lily, an inspiring girl who never loses sight of her goals. Her mom submitted a few photos to illustrate the true meaning of tenacity:

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“This is Lily getting fitted for a body brace. We still haven’t found funding for the brace, but this is the first time she’s ever stood up mostly independently!”

Below: “Lily works so hard everyday to move forward.”

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Exceptional Kid #9: Shane, age 5

334415_4456831913318_1382364317_oI’m only just beginning to know Shane and his family, but I have to tell you – there’s something completely heartwarming about them. For starters, Shane is an exceptionally bright kid. He’s going to do something spectacular in life – I can feel it. That’s what I’m waiting for.

Shane’s mom, Adrienne, writes:

“You might think that Shane is a big fan of the Giants. But no! He just loves to have his picture taken. 😉 I guess you could say he is a big flirt with the camera.”

The way that we met is really special, too.  It was New Years Day. Our family was having lunch at a “restro-naut” and Bunz was especially loopy – as it turns out, January was a bad month for seizure control. Convincing Bunz to eat makes me a little loopy, too.  I remember steering him through the crowded restaurant to the restroom and nearly running over one of the waiters. “I have a little boy with CP, too,” he said. Out of nowhere. It was the best random statement anyone has ever made. I’m with you. We proceeded to have the most productive 5-minute conversation possible, and then he brought Bunz a spillproof cup of apple juice. The rest is history.

10904083_10204860277461132_6639149655618478419_o“We are so proud of Shane’s progress. What a fantastic thing to see him stand so tall in front of the Christmas tree with his Dad. He is so amazing!!”


And last but certainly not least …

… our celebrity guest …

… get ready for it!

Exceptional Kid #10: Fireman Max, age 10!

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Yeah!! I’m so excited to include Max in our CP Awareness post! I’ve been following his mom’s blog, Love That Max, since well … forever. Years and years. We’ve watched Max grow up. Type his own blog post. Become an honorary fireman. He’s such an inspiration for us – for Bunz and thousands of kids and parents around the world. Everyone loves Max.

His mom, Ellen, writes:

“My son doesn’t know the meaning of ‘disabled’—he just knows to figure out how to do things his way, on his own timeline. In other words, he rocks.”

To that, I say YES. Happy CP Awareness Day!

Why our #lifewithepilepsy is just a little hard

I’d like to share a little secret – the reason that #lifewithepilepsy isn’t hard hard. Just a little hard.

I’m sharing this because all of a sudden family and friends are offering to buy airline tickets and come help, and that’s not at all what I intended. You guys are sweet, but remember? I only ask for help when I’m wearing Hammer pants.

Now. It took me years to find this secret, so don’t think I’m going to give it away just like that. Let me first tell you how I discovered it.

Awhile back, I took a course to become a certified hypnotherapist. I thought I wanted to help other people, but in hindsight I realize that I needed to help myself first. There’s a lot of complicated baggage to sort through when you transition from not being a special needs parent to suddenly being one. And there’s no training program to prepare you for this stuff. Life just happens. You make it work.

When it was my turn, my instructor deftly steered me into hypnosis, then stepped aside and let my subconscious mind take the reigns. At some point, she snapped her fingers and I found myself standing beneath the eaves of a majestic cathedral, inhaling crisp mountain air and looking out over treetops as I waited for my companion to arrive.

I felt calm, settled, still. He would come. When didn’t matter.

(Who was this companion, my ego wondered?)

Soon I saw the top of his head bobbing along the stone path toward the cathedral. A young boy, blond. Wearing a red wool sweater, hand-knit and unevenly hewn.

He ran with perfect ease. Not because he was late or I was waiting. But because he was so excited to meet me. He couldn’t wait to embark on the adventure we had planned. And he knew exactly how it would turn out.

No hesitation. No apprehension. Just joy.

The next image I saw was a baby in utero, sucking his thumb.

My baby. My Bunz.

That’s when it dawned on me: He came here willingly. And not just willingly. Eagerly.

THAT was powerful.

Now, depending on your belief system you’re probably sitting there thinking, hmm. Nice metaphor. Or wow! Past-life recall! Or in the words of Aunt Esther – you ol’ heathen!

I don’t know about any of that.

What I do know is that it was a major turning point for me. It opened my eyes to a new level of awareness that Bunz is so much more than what we see. The image of him running to meet me – and his excitement to come into this life, despite all its challenges – was so powerful. Because in real life, he doesn’t run.  And it’s hard to imagine that he would choose these challenges. You know, if he had a choice.

So the secret is that he is Glorious. Whole. Complete. Even in his incompleteness.

Perhaps Bunz and I knew what we were getting into before we entered this life. Perhaps his spirit is even older and wiser than mine. Perhaps we’re here to learn.

Or perhaps it was just a metaphor.

Sometimes I get carried away. 😉

59039_10100513066357721_4700457_nBunz’ first steps (age 2)

Meet Bunz!

I’m excited to introduce you to Bunz, the star of this blog! Having no idea where to begin, I’ve created this handy Top 10 list. Hopefully this will explain everything you need to know to follow this blog.

Top 10 Things to Know About Bunz

10. First, the hard stuff: Bunz was born in 2008, the year my mother-in-law passed away from pancreatic cancer. Having a baby and losing a parent is a lot for one year. But there was more: Baby Bunz had major medical problems at birth. Eventually he was diagnosed with cerebral palsy and epilepsy. All these things made for an intense year. Sometimes I wonder what our life would be like if he didn’t have these issues. As it turns out, it would be pretty boring.

team bunz photos


9. Fast-forward 6 years and Bunz is in love with the singer from Icona Pop because she’s such a badass that she crashed her car into the bridge AND DOESN’T CARE. My darling baby boy turned to me the other day and said, with a gleam in his eye:

“Mama, I love her.”


8. Last fall, Bunz informed us that when he grows up, he wants to be a punk rocker:

“Let me show you. I wanna eyebrow ring and a nose ring. And an earring (gesturing for a small hoop at the top of his right ear, and studs on both ears). And my name gonna be Ms. Lee. And I’m gonna be 25. And Mama? My hair gotta be pink. With a candy cane in back.”

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7. Bunz would also like to be In Charge. Preferably right now, but also when he grows up. This could entail being a police officer, for example. Or possibly a school principal. His very first conversation with the principal of his elementary school is telling. Things were already tense that day because I was trying to make a case that her rigorous, high-achieving language immersion school was the best placement for my child with multiple disabilities.

Principal, sternly: “Hello Bunz. My name is Principal S. I’m the boss of this school.”

Bunz, casually picking at the bindings of books on her bookshelf: “Uh, NO … I’m the boss of this school.”

Principal: “No Bunz, you’re the boss of yourself. I’m the boss of this school.”

Bunz, pretty sure he’s right: “No … I’m the boss of this school.”

A few months later, in the car:  

“Bunz, randomly: “Principal S wears little circles in her ears.”

Little Bear: “Haha, why do you say that? Do you want to wear little circle earrings?”

Bunz: Shakes his head, smiling. “When I’m boss I’ma wear big circles in my ears.”


6. More than anything in the world, Bunz loves music. He says he loves me a million times, but I bet he loves music a hundred million and fifty. Before he was born, I mumbled along to hymns and singalongs and mostly just tried to blend in. Then, before I knew it, Bunz and I were belting out songs from the Sound of Music in the YMCA locker room; jamming to Music Together on the street; singing loudly and proudly (to my husband’s complete and utter embarrassment). Fortunately, he is always on pitch. Me, not so much. (“No, it’s a C, Mama. C. Like this. C-C-C-C-C!”)

Here’s a video of him at age 3, sitting down for the first time at a free piano we found on Craigslist:


5. He loves to memorize the most random things. He will tell you the name of that guy he sat next to on the train last week and the license plate number of our neighbor’s car. At age 1 and a half he could say the alphabet backwards and forwards. At age 3, he knew the capitol cities and nicknames of all 50 states. That same year, he memorized the ASL alphabet from a poster on his daycare wall and memorized the multiplication table up to the 10s from a placemat. (He has since forgotten most of the multiplication table, but not the states.)

We would always bring this up in response to #4, and we were always told that memorizing random information is not a Good Sign unless you actually know how to use the information. Around that time, Bunz was using his new-found love of geography to make snarky jokes: “Do Juneau the capital of Alaska?” he’d ask his teacher, then squeal in delight before she could answer. Apparently that wasn’t what the cognitive test people had in mind. When he turned 5, I heard him sound out ‘pedestrian’ — and in that moment, I knew #4 was partly a load of crap.


 4. According to standardized tests, Bunz’ cognitive abilities are profoundly low. Or very superior. One or the other. If you ask the teachers at Little Bear’s preschool, they’d probably put him in the profoundly low range because the only word he ever says to them is “triangle.” When we get there, he beams and exclaims, “Triangle!” and they shower him with love and graham crackers. They had no idea he could speak full sentences until a few weeks ago, when I told them. They probably still don’t believe me.

Similarly, a local regional center for people with disabilities placed his cognitive abilities in the 1st percentile and told us he qualifies for intellectual disability services. You can’t beat free shadow aides for the after-school program and summer camp. But also – gosh. Just… gosh.

A more recent test administered by a school psychologist put his abilities in the Superior and Very Superior range for multiple areas, which is consistent with his report cards so far:

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But honestly. What would you do with conflicting information like this? Where would you even start to think about your son, his potential, his future? What would you hope for? How hard would you push? We don’t know, so we just assume the best. In our eyes, Bunz is an exuberant, strong-willed, absent-minded genius. He continues to make steady progress in all areas, which is encouraging.

In one of my favorite blog posts ever, a mom writes:

“Wake up! Your kid is off the charts? Burn the charts.”

I love her like Bunz loves Icona Pop.


3. Bunz is a trickster, which goes a long way toward explaining the “Very Low” score for “Understanding Directions” in #4. He’s happiest when pushing buttons, and I don’t mean electronic ones (though he loves those, too). While he’s doing that exuberant, spastic dance in front of you, basking in your attention, he’s actually sizing you up to see what buttons are available for him to push at a later date. Preferably when you present him with a set of directions to follow.

Consider Little Bear, for example. What does Little Bear love more than anything in the world? Knowing the right answer! Little Bear raises his hand in class and talks over the other kids like nobody’s business (I know, we’re working on it). So what did Bunz do? He taught Little Bear all the wrong color names and letter sounds. On purpose. With a devilish grin. For the longest time we thought Little Bear was color blind and dyslexic.


2. Bunz won’t eat anything but cheese and yogurt. At least right now. Hopefully that will change after a few months of feeding therapy (aka “Food School”). A year ago, back when he loved “SAUSAGE-EGGS!” and ate almost everything except green veggies, I didn’t understand picky eaters. I thought maybe the parents just weren’t trying hard enough. Or maybe they were Vegan. Or maybe they kept too much junk food in the house, so naturally the kids weren’t going to want real food.

Now look at my shopping cart:

FullSizeRender(8)See this? This is my punishment for being so judgmental before. For attending Vegan Potlucks and cringing when my charming little carnivore shouted, “SAUSAGE-EGGS! SAUSAGE-EGGS, MAMA!”

Now Bunz refuses water and won’t even drink juice (juiceFullSizeRender(9)!) unless it’s topped off with the head of a pretty blonde lady. He has a collection of “ladies” that he brings to school and keeps with him during carpet time. I can only imagine what the other kids think about that.

Incidentally, the clinic psychologist said that some kids will actually starve themselves rather than eat. (She said nothing about his fascination with blonde ladies.) Kids like Bunz tend to have sensory issues or gastrointestinal irregularities, she said. But just for the record, it’s actually a Thing. It’s not that we messed up as parents. Some kids just won’t eat anything. Even the oh-so-tempting junk food in my shopping cart.

I should put this stuff back.


1. Bunz charms everyone he meets. Without exception. Twenty-something drama queens who can’t stand kids find themselves catering to his every need before they even know what hit them. Watch out or you could be next. You’ll see a random kid running toward you on the street and his rapid approach will activate your fight-or-flight response, but the exuberance in his face will keep you rooted to the ground. If only out of curiosity. “Come!” he will exclaim, grabbing your hand. You’ll look at me, hesitantly, wondering whether it’s ok to say no. Or yes. Shit. What should you say. You’ll be totally confused. “Oh! Uh, haha, I can’t come! I have to go to work/meet my friend/feed my guinea pig!” you’ll say, and feel really badly for saying it (promise me you’ll feel bad. You will, right?). Then, after allowing him to give you a hug and a smile, I will pry his little hands from yours and drag him down the street, on toward his next best friend. Welcome to Team Bunz. 😉