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

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!

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#originalprankster

(aka “Pop Pop”)