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.

46950_10100506352412521_6557321_n

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!

Julia-w-Lou-Seal---for-web

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.

enzo1

Now I know what love is.

2014-06-16 04.21.08

Now I understand the meaning of acceptance.

2014-04-27 11.29.46


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.

FB_IMG_1426901340257


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

_mg_3462

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

IMG_4327


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:

11081407_10204755830110440_1160734665_n

“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.”

11051310_10204755830070439_565027098_n


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!

max

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)

I had no idea what to do about my son’s epilepsy. Until he told me.

I want to tell you a story about a hard day, a girlfriend, and my cat.

But first: Promise that when I say ‘hard,’ you’ll take that with a grain of salt. Losing a parent is hard. Right? Stuff on the news is hard. Today was just a bump in the road. Remember that, as we go on this blogging journey together.

And remind me when I forget.

FullSizeRender(1)

Most days, Bunz wakes up before the alarm. “It’s time!” he announces in a booming voice loud enough to wake our downstairs neighbors. “I’m a Cheerio man! Ready for my CHEEEEERIOOOOS! Ok, Mama! O-KAY!”

The rest of us groan and grumble, but really it’s not a bad way to wake up.

This morning was different. The room was dark and quiet. Next to me, Bunz laid very still, staring at the ceiling. “Bunz?” I whispered. I shook his shoulder. “Bunz?” His eyes were open, but he wasn’t responding. “Come on, stop playing. Bunz!”

My heart was racing. Sometimes he’ll blink, then look at me and say something completely random about Mickey Mouse Clubhouse. But today he wasn’t daydreaming. Something was wrong.

Like nearly half of all kids with cerebral palsy, Bunz has epilepsy. He takes medication. Mostly it works. Sometimes it doesn’t. We’ve tried complementing Western medicine with everything we can think of – dietary changes, essential oils, chiropractic therapy, energy work, everything – but we can’t shake the seizure monster. The fucker just keeps coming back.

Bunz’ seizures usually unfold a certain way: He lifts his head off the pillow and takes ragged breaths. We turn him to his side. His face trembles. He drools. We stroke his back; tell him he’s doing a good job. He clenches and unclenches his jaw, a fist, a thigh. We tell him he’s safe, we’re right here. The trembling and clenching subside. We snuggle for a while. Help him to the bathroom. Get a drink or a snack. Change the pillowcase. Then, back to bed. Bunz lives to fight another day.

That’s the routine.

But sometimes Bunz’ brain says, To hell with routine! And goes into a static seizure that doesn’t stop. Once, when we were traveling, an ER doctor went through three different IV medications before one worked. That was a hard day.

Today he was breathing and his skin was pink. So I waited. Turned him to his side. Stroked his arm. No response. Just as I was about to get my husband from the shower, I heard a familiar sound: uneven breaths, chattering teeth. His fist clenched rhythmically around my finger. Warm urine soaked through the sheets. And here we go.

I gave him the emergency rescue medication, then waited. Still seizing. Five minutes passed. Ten. Waiting can make you crazy.

“Bunz!” I shouted, losing it just a little. Across the bed, Little Bear stirred. “Good morning, Mama!” He started jumping around, too close to Bunz and the wet spot.

“Hi love. Do me a favor and go tell Daddy to come here. Ok? He’s in the shower.”

Bunz wasn’t coming out of it. But he was breathing. But he wasn’t coming out of it. But he was pink. But he wasn’t coming out of it. Fifteen minutes passed. Finally I picked up my phone and dialed 9-1-1.

“Ambulance, police, or fire?”

“Ambulance, please.”

The frustrating thing is, this isn’t the first time this has happened. It’s not even the first time this year. And it’s only March. I’ve written before about my frustration with modern neurology and how remarkably few answers there are for kids with epilepsy. There should be an answer for Bunz. Someone should know what the fuck to do.

No one knows what to do.

In the meantime, we’ve been having a lot of hard days. Too many. Bunz has missed a lot of school. I’ve been missing a lot of work. But that’s ok.

The rest of the morning was a blur. We recognized one of the paramedics from a previous call. In January, he’d helped Little Bear get ready so he could ride with us in the ambulance. That morning I had insisted that my husband leave for the 2-day job interview he’d spent weeks preparing for. He didn’t want to go. Go anyway, I’d said. It was down to him and just one other guy.

That day, my husband cried as he stood at his car. We watched him through the back window of the ambulance. Little Bear and I waved until we turned the corner.

Today I remembered him standing there, and I tried not to cry. The new paramedic was flirty. I wanted to tell him to fuck off. But I think actually he was just trying to be nice. I was in a terrible mood and there was urine on my pajama pants. I held Bunz against my chest and stared out the window, watching the grey sky slip by.

On the way to the hospital, Bunz’ face relaxed. His thumb found his mouth. He was coming out of it. Sleepy but ok. My shoulders relaxed. I snuggled my son.

Going to the ER is always a bit like playing telephone. First you tell your story to the paramedics, who tell the triage nurse, who recalls the story to a resident, who reports it to the ER doctor, who discusses it on an actual telephone with the neurology consult. The next thing you know, someone comes in and asks you to sign a form declaring that your son is Juanita Olivera, age 12.

At some point during this process I realized:

  1. I didn’t have a wallet.
  2. Or house keys.
  3. Or a booster seat.
  4. Or a car.
  5. I was wearing blue disposable Hammer-style pants, and
  6. Bunz had urinated all over his clothes during the blood draw, so he was going to be sent home in a gown.

I don’t often ask for help, which I know makes some of you crazy. You tell me to ask for help and I say, yes, yes, I will next time, I promise. And then I don’t! But this time it was unavoidable.

So I called the only girlfriend who would truly GET how much this day sucks, without a lot of complicated explanation on my part. Which is a good thing because I didn’t feel like explaining. Please just pick us up, I texted. Her son is the same age as Bunz and has epilepsy, too. He goes to a private school where some kids’ families are forced to pay out of pocket for shadow aides. She’s worried that maybe one day they’ll be next. She’s mortified about the time we met up at the zoo and Bunz’ sheer exuberance triggered her son to full-out wail on him, but I love them even more because of that. Because there is no pretending that things are ok when I’m with her. It’s perfectly ok that things are Not OK. We can be Not OK together. And eat sandwiches and drink coffee and laugh. Or cry, depending. And there is nothing better than that.

On the ride home, we loved up Bunz. Her amazing son read us a book called Mr. Birthday. Later, alone, we talked about how I was Not OK. How I wanted answers. WTF? Why are there no answers? Do I have to do everything myself? The scientist in me thinks sleep-related hormones trigger Bunz’ seizures. Why is that so hard to figure out? Researchers should be on top of that. The clinician in her thinks that a magnesium overload was probably not to blame. I was worried we might have overdone it with Epsom salt baths and the Natural Calm laxative. But go light on the Epsom salts just in case, she said.

She let us out in front of our house. I carried Bunz inside. I wanted to put him in our bed because we have a video monitor set up in that room. But it was completely soiled. Urine had soaked through the mattress. I gave Bunz a snack, then tucked him into his real bed.

I went back into our room, stripped the sheets, and sat down on the corner of the bed. This life is exhausting. And overwhelming. And sad. I’m out of ideas. We didn’t give him chocolate. Or soy. He isn’t sick. Or dehydrated. He hasn’t had a seizure in a month. He’s been doing great. WTF. Just WTF, I said to God, the Universe, the Angels, Mother Mary, Jesus, anyone who would listen. I give up, I told them. I just don’t know what to do for him. What am I supposed to do? I need your help because nothing is working. I don’t know what I’m supposed to learn.

Our cat looked exhausted, too. She leaned her head against the doorframe as if to say, “I know. It does suck. You’re right.” We sat and stared at each other for a while.

Eventually, I heard Bunz call from the other room: “Mama!”

Crap. I didn’t know he was still awake. I stood up and wiped my eyes.

“I love you sixty times ZEEEEROOOOO!”

I peeked into his room. “Hey, Bunz. What can I get for you?”

“Just love me, Mama. Come!

Ah. Love him? Is that my answer, Universe?

I might be crazy, but in that moment, all I could think was

That’s the ONLY answer.

Just love.

Well.

That I can do.

In which Bunz wreaks havoc on Ms. C’s kindergarten class

Exciting news, everyone! We recently started working with a behaviorist to address some of the negative attention-seeking behaviors that Bunz loves so much. We’re learning to out-trick the trickster, so to speak.

Our lives are about to be magically transformed:

Food

My husband and I got the idea for a behaviorist from the show Parenthood. If you’ve never watched it, one of the lead characters is a boy with Asperger syndrome. At first we were like: “Why is Minka Kelly following that boy around?” And then: “How do we get a Minka Kelly?”

As we started to investigate, we realized behaviorists are all around. You just have to know where to look. Our babysitter, as it turns out, is a behaviorist. (This whole time, right under our noses. How did we not know that about her?)

But these days she has her hands full teaching energetic first graders. So she recommended we work with her close friend, Jane, who—go figure—is also a behaviorist. For 6 years we knew nothing of these people, and now they’re everywhere.

“Jane has worked wonders in my classroom!” our babysitter said. “I love my life now! Teaching is so easy! I’m never even tired anymore!”

Ok, so she didn’t actually say those last two things. But she did mention something about her life being much easier, which is something I sincerely want to bottle up and present to Bunz’ kindergarten teacher, Ms. C.

I love Ms. C. I love that she is efficient and nice-but-not-too-nice and extremely good at her job. I love that she is creative and smart and communicative and has a sense of humor. And most importantly, I love that she seems to love my Bunz. Or at least tolerates him on bad days.

She is definitely aware of this because I’ve written her at least two (three?) cards saying so. It’s not that I’m a brownnoser. I just really want her to know that as a person, I feel some remorse for wreaking havoc on her perfectly organized classroom. But as a mother, I can’t let remorse get in the way of the best path for Bunz.

And that’s where Jane comes in.

The first time I met Jane for coffee, I could tell she was a perfect match. A lot of skilled therapists work with Bunz, but few really get him. Some view his cleverness, his love of mayhem, his modus operandi as flaws to be corrected. I got the feeling Jane thought they might boost his future star potential if we could make a few little tweaks here and there. It felt good to be on the same page.

Jane explained that she wouldn’t work directly with Bunz – rather, she would work through my husband and I, and Bunz’ teachers. She’ll empower us to implement a strategy and stick with it long after she has moved on to other little tricksters.

It sounded good. So I said, “Okay!”

After our meeting, I called Bunz’ school to ask permission for Jane to observe him in class.

“Hi Principal S, it’s Bunz’ mom. I wanted to — ”

“Oh hi, thanks for calling. Did Ms. C tell you what happened?”

Umm. No? But no matter. I had called at just the right moment to hear about it.

Incidentally, my darling child had grabbed another student’s art project – a paper panda – and torn the ears off. Then he grabbed someone’s jacket and refused to let go as Ms. C tried to wrench it from his aggressive little hands. Then he stomped around a bit and latched on to the classroom emergency backpack. Or maybe that happened another day. In any case, Ms. C marched Bunz straight up to the principal’s office, where she and Principal S explained in their rapid-fire foreign language that his behavior was not acceptable and he’s not to do it ever again.

“Wow, did he understand any of that?” I asked. Usually we have to speak slowly and repeat instructions to give Bunz time to process what we’re saying. In English.

“You know, it’s amazing how much he understands. When I said he didn’t let go, he responded in English, ‘But I did let go!’  Then I explained that he let go later, not when Ms. C asked him to.”

I’ve never felt more victorious and defeated all at the same time. Elated that he understood; terrified that he might eventually be considered too disruptive to stay at the school.

“So … how soon can Jane start?” I asked.

That was a couple of months ago. I think she started observing Bunz in class the next week.

I like it when Jane observes Bunz because it provides tangible evidence to support the existence of Santa Claus, which I’ll explain later. And also because she’s going to magically transform our lives, which is of course the reason we’re paying her. Of course.

Here’s an excerpt from her very first set of notes:

“Transition after table activity time: Bunz attempted to sit with the wrong group (Ms. C’s group) when he was asked to sit on the carpet and read with Ms. K [his paraprofessional]. Ms. C attempted to redirect twice: Once, by showing him that his name is not listed as part of that table group, and second: by pointing to the smile chart at the front of the room. She counted: 1, 2, 3 … Bunz waited until she was almost finished counting then said, “No!” as he knew that the smile face would be erased. When he continued to attempt to sit down, Ms. C stood up and erased the smile face. He later tried to ring the bell before Ms. C blocked it. This particular scene is reported to occur frequently.”

I immediately typed a long and remorseful note to Ms. C. I’m sure she saw my name pop up in her inbox on a Saturday night and thought, “Dear God. This woman is INSANE.” In my note, I proposed that we aren’t the monster parents that we appear to be. I swore up and down that we didn’t teach Bunz to grab the teacher’s bell and ring it like a maniac. I’m not sure where he gets this stuff, I wrote. I felt so bad.

(Later, my husband said, “You’re really not sure where he gets it? Really? When do you ever follow the rules? There is a clear family history.” After he said that, I thought long and hard about various family members’ life choices. Pop Pop’s tattoo of the exotic dancer; the way he’d wink at me before instigating a major family drama. Being 8 years old and frantically buckling my seatbelt as a family friend/ex-con came running out of a grocery store carrying what appeared to be a swordfish. I realized my husband had a point.)

Fortunately, Ms. C sent a very kind reply that same night, putting my heart at ease. So now you tell me: Is there anyone better than Ms. C?

No. The answer is No.

But back to Santa. While driving in the car the next day, I asked Bunz about ringing the teacher’s bell. Little Bear interrupted and said, “But Mama? How do you know?”

“How do I know what, Little Bear?”

“How do you know that Bunz rings the bell? Who told you?”

Suddenly, the car was quiet. Four little eyes stared at the back of my head.

Now, the thing about riding in my car is that any audio file from my phone could potentially start playing on the stereo at any time. We transition seamlessly from Uptown Funk to The World Is a Rainbow to a phone interview with an expert on fecal transplants. You just never know.

At that very moment, Louis Armstrong and Lena Horne decided to start singing, “Santa Claus is Coming to Town.” There was an audible gasp from Little Bear.

I didn’t even need to say it.

Santa. He’s been watching. He KNOWS.

I looked at Bunz in the rearview mirror and saw his cunning grin and sparkling eyes. For a moment I thought I was looking at Pop Pop’s ghost. Bunz didn’t believe for one second that Santa had reported him. But Little Bear did, and it was hilarious.

So we left it at that.

From Jane’s notes so far, I have learned many things. Mostly that teaching Bunz requires agility and stamina; and that Bunz is even more of a handful than I previously suspected, if that’s even possible:

“English class with Ms. N: Bunz was observed to participate in whole group instructions (e.g., repeating phrases). When he was chosen to come up to the board and fill in a simple sentence with the correct word (He ___ she like to hop), he was observed to pick the wrong word. When Ms. N asked him if it sounded correct, he laughed and said yes. After Ms. N called on the class for another student to come try to pick the correct word, Bunz was observed to grab at Ms. N’s marker and the incorrect word saying, “But I want it!” He was easily redirected to sit down, as Ms. N ignored this behavior. When it was time to break up into table groups, it was observed that Bunz needed redirection to go sit down (he was interested in watching a peer put on a Band-Aid).”

Fortunately, Jane is excited about the prospects of implementing The Plan. Several things are working in our favor, she says. First of all, the school is very supportive. And Bunz has a 1-on-1 paraprofessional for most of the day, which will ensure consistency and follow-through, and give his young para a few tricks for her ever-expanding toolbox. Good times all around.

In a couple of weeks, we hope to roll out The Plan.

I’ll keep you posted!

1920104_10104969866584341_3730609271555778531_n

#originalprankster

(aka “Pop Pop”)

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.”

piercings


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:

FullSizeRender(5)

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. 😉

The other woman

Today I found an awesome kid-sized craft table for the boys’ room.FullSizeRender

Technically the room belongs to both boys. But no one sleeps there … and it’s full of toys that only Little Bear plays with … so let’s just be honest and call it Little Bear’s room.

A few weeks ago, Little Bear started crafting and just couldn’t stop. He’s still going strong, churning out 10+ pieces a day. And each one is so special: “Mama! Come look! I drew a mountain of all the numbers from 1 to 100!” I looked it over and marveled at the backwards 2s and the 39 inexplicably followed by 30, like the impossible stairwells in an M.C. Escher piece.

Some of Little Bear’s drawings are unsettling. Like tkitchen1his one, in which our house catches on fire and we have to live in a ‘kitchen’ (his brother’s word for ‘camper’) parked out on Kirkham Street.

Anyway, we’re running out of (a) space for him to create and (b) places to display his creations. Our dinner table doubles as Bunz’ homework area and Little Bear’s art studio.

So yeah. The kids need a desk.

Today was one of those days where I had a ton of work waiting for me, but nothing – nothing! – seemed more pressing than rearranging the boys’ room and creating space for the new craft table. God, how I love reorganizing!

In a matter of minutes (ok, hours) the room was completely transformed. A dollhouse and other toys from the living room were now tucked away in the bedroom, out of sight, out of mind (for me, anyway). I stood in the doorway to admire the new table, the tidiness, the everything-in-its-place-ness. What a sense of accomplishment! Excitement! Anticipation for them to come home and see!

And then, inexplicably, a wave of sadness. It’s hard to explain, but it’s like I was suddenly peering through a window into an alternate life. In the bedroom of this alternate life was Little Bear, an only child. I watched his shadow move through the room, working intensely at his table, playing pretend, laughing with his friends. So simple, so natural, so #everydaylife.

FullSizeRender(3)I realized I was seeing this scene though the eyes of another woman — the woman whose life this belonged to. I took a deep breath and noticed how this felt for her. I felt strangely light and carefree. I noticed that she wasn’t at all worried about the child at play. How lovely it felt not to be worried or concerned about the the next big thing. Maybe she had other worries in life (maybe not), but she felt bright and cheery when she considered the boy and his future. There was no need for concern here. Nothing was out of the ordinary.

In my mind’s eye, I took a step back and saw her standing there in the doorway. She had long, straight brown hair and wore a stylish dress. She looked polished, responsible, in shape, and organized. The very picture of adulthood.

Then I looked at Real Me, standing there behind her. I noticed my unruly hair, my clothes, the fatigue around my eyes and the heaviness in my heart. Oh God. Me.

What would this other lady think about Real Me? I was afraid for her to turn and see. Me, who is clearly not adult enough to have a neat and tidy life. Me, who has so much trouble brewing that I must have brought it all on myself. Ugh.

In the midst of my embarrassment, my mind flashed back to a writing class I took many years ago. A visitor from the New Yorker was reminding us that a good storyline always has tension. Without tension, your story is as bland as white bread, he reminded the class.

I looked back at Real Me and saw my life as a story in print. This is the story of a hellion, a warrior, a champion. This is the story of a woman who takes the bull by the (figurative) horns and fucking wins. She doesn’t let anything get her down — especially when it involves her kids.

And all because she had a freaking bull chasing her around in the first place. Dumb old bull, she might think to herself. But no bull, no fight, no victory. No tension. Bland white bread. End of story.

I turned and saw Real Me in a completely new light. Not as a failure but as a fighter – a woman with one hell of a story to tell. Tension? HELL YES. She deals with whatever life throws at her, which is probably why her hair always looks so crazy.

Will she win? Damn straight. Or she’ll die trying.

FullSizeRender(2)

(In which a tall, skinny, gorgeous lady presents Real Me with a bouquet of flowers for my birthday. I’m the one with a big blue belly, fluffy brown hair, and yellow sneakers.)