Wednesday, November 28, 2012

What I Should Have Said to My Son's Physical and Occupational Therapists



Every time I venture back into the Physical Therapy (PT) World, I reemerge scratching my head and muttering to myself.

Don't get me wrong — I think physical therapists are very kind and smart and have a great deal of knowledge and experience about cerebral palsy. That is why I keep going back every few months. Just to make sure I'm not getting too far into the Anat Baniel Method (ABM) World and missing some key piece of information. But by and large I find physical therapy philosophies to be fundamentally flawed when dealing with a person with a brain disorder not a muscle disorder.

In October we had a PT appointment during which Malachi was forced to sit upright with as little assistance as possible as he attempted to manipulate objects with his hands. Every few seconds, Malachi would nearly topple over and as a result he became more frustrated, closed and defensive in both his movements and his attitude. My overall impression was of somebody trying to teach him Swedish by making him memorize long sentences phonetically. It was clear to me that by the end of such a frustrating and bewildering venture, Malachi might be able to approximate Swedish but it would never be functionally useful to him because he would have never learned what the words meant or been allowed to order them into sentences that expressed what he wanted to say.

Yesterday we had an appointment with a new PT and OT at a very well-regarded local hospital. (This was an appointment I made some months ago, likely during an "ohmygodamIcompletelymessinghimup?" late-night stress-a-thon.) Because it was a new appointment, they did very little work with Malachi but even so, it was like we were talking about a different disorder.

For example, I told the PT that Malachi's primary difficulty was in understanding and controlling his spine. The PT corrected me, saying "his trunk." Well, yes, his trunk, I guess that's true. But the vast majority of the power and control in your trunk comes from your back i.e. your spine and the manipulation of those large, powerful muscles around it. In my (albeit limited) experience, most PTs ignore the back and concentrate on the tummy muscles, like a bodybuilder worried about his six-pack. But look at any typical baby who first learns to walk and you will see his tummy poofed out, his lumbar curved and his legs far apart. This is a very stable and easy position. If you could somehow force that baby to walk with his butt tucked under and his tummy rigid, he would not be pleased and he would probably fall down a lot.

During another part of yesterday's appointment, the OT had a few objects for Malachi to manipulate. When he would be unsuccessful after a few seconds, she would grab his hand and "help" him with the task. While he was happier that the ring was on the stick, or whatever it was, I could tell that he had learned approximately nothing about what it would take to put it there — except perhaps that he needed her hand on his to make the magic thing happen.

At another point, she was watching him struggle with a iPhone toddler puzzle and remarked at how good he was at figuring out ways around his motor difficulties. "What a smart boy," she beamed at me. "You can't teach that sort of problem solving." I feel so sad at that remark because that's just not true. But how could I possibly explain that in a few short seconds?

Perhaps I should have said this: ABM is all about teaching children that they have a choice to make, empowering their choice (even if we think it's the wrong one), and encouraging them to continually search for better alternatives. The self-confidence, limitless growth and sense of security that results simply cannot bloom in a child who is forced to do things the "correct" way (ways that to him seem dangerous or incomprehensible or else he would already be doing them), or given tasks that are so far beyond his ability as to only teach him that he is hopelessly incapable or dependent on others for success.




Sunday, November 25, 2012

Evolution of a Thanksgiving Table (Silent Sunday)

10:17 a.m.

11:19 a.m.

12:58 p.m.

1:33 p.m.

2:53 p.m.

5:27 p.m.

5:32 p.m.
"Dining room" table in the living room — nowhere else to put 10 people!

Wednesday, November 21, 2012

Great Gift Ideas that Give Twice!

A quick post before I go into Turkey Day hibernation!

Whether you are doing Black Friday, Small Business Saturday, Cyber Monday or the brand-new Giving Tuesday, we've got ya covered!

My high-quality children's book, Dark & Light: A Love Story in Black and White, counts for all categories AND we are doing a special promotion. Buy two books and get the third FREE. Enter code HOLIDAY1 ! Offer valid allll the way until Dec. 2!

Check out the full story here: http://darkandlightbooks.com/book-store/

Also, a buddy is doing some beautiful jewelry and holiday decorations at Hope
For Mattie:

http://hopeformattie.wordpress.com/holiday/
http://hopeformattie.wordpress.com/hope-for-mattie-jewelry/

AGAIN: All the profits go to our kids! Give more than one gift with a single purchase!

(And please feel free to comment with any other products like this that you know about! I'd love to collect a list.)

Thank you! And feel free to share using the icons below! And for goodness' sake, eat some turkey!


UPDATE Nov. 24: Another buddy has a bunch of cute ornaments for sale that help her son Jakob with his treatment program: http://www.helpmewalk.org/ornaments/ Go check them out and give some "JOY" to Jakob and your own friends and family.

And here is a great list by LoveThatMax from last year with even more cute crafts that give twice: http://www.lovethatmax.com/2011/11/holiday-gifts-that-benefit-kids-with.html

Wednesday, November 14, 2012

A Pajama Revolutionary

If this past weekend were a person it would have shoved a mirror right up to my nose and screamed "LOOK!!!"

"LOOK how far you have come in six months!"

"LOOK how much you've grown!"

"LOOK at what you've accomplished!"

As I wrote about earlier, on Sunday I held a book release party at Annie Bloom's Books in Portland for my board book Dark & Light: A Love Story in Black and White. (Frequent readers will know that this board book is not only awesome and a fabulous addition to any book collection but that all the profits are dedicated to my son's medical costs.) This was the culmination of an effort that started in April to bring Dark & Light to print, something that six months ago I thought was very doubtful.

But that's not all that was going on six months ago. Last April I went to a workshop by Anat Baniel — founder of the Anat Baniel Method, our primary form of therapy for Malachi. The workshop was up in Seattle and it was there that my husband and I decided to fully commit our family to following her philosophies in the hopes that Malachi would progress faster and perhaps even learn to crawl.

(Also of note: It was only in January that Malachi said his first word. Today he speaks in full, spontaneous sentences such as: "Mama, pick-er up, pease," "Climb on Daddy, pease!" and his personal favorite mealtime game where he asks himself to read the digital clock in the kitchen: "What time. Is it? It's! Eight! Twennnnny-Sis! Eight! Twennnnny-Seven! Eight! Twennnnny-Eight! Eight-twenny-eight. TWO eights!")

 (Yes, he says all of that. In a constant stream. For the entire meal.)

So on Saturday, I went to another of Anat Baniel's workshops, this time here in Portland. The eight-hour workshop was not just a lecture, but experiential. Most of the day was spent on the floor and much of it was doing very small, slow movements that really made you feel how babies learn to move. We spent an hour or more figuring out how to roll over. You would be amazed at how many adults have forgotten how — at least forgotten how without unnecessary stiffness and pain.

Photo courtesy Ed Dassie


Indeed, I'm one of them. Part way through a lesson on rotating the shoulder, Anat pounced on me for an opportunity to show the whole room how much easier I could be doing it. She told everybody to gather round as she grabbed my fisted arm and fairly threw me back and forth on the ground with almost no effort whatsoever, even putting me up to sitting before I fully realized what was going on.

I have no idea how she does it but somehow she was able to completely by-pass my muscles and talk directly to my skeleton. Even now as I think back on my memory of the event, I remember only being a skeleton and only vaguely aware of the muscles and organs and other normally perceived parts of my body.

By the end of the workshop, everyone was buzzing and excited about ABM and wanting to know more. Me too, I was reinvigorated with our choice of ABM. A huge missing piece of the puzzle for me fell into place during Anat's presentation on the idea that there are two different types of brain plasticity — one that is ingrained through repetition and one that is ingrained through variation and that it is the variation plasticity that is missing in special needs kids. Kids with special needs can only do something, like pick up a ball, a limited number of ways, whereas typical kids can pick up a ball in any number of ways and only after hundreds of experiences of picking up the ball do they settle on the best way. This means that the last thing caregivers and therapists should do is give their disabled children repetitious tasks.

I was also riveted by guest speaker Dr. Christina Bethell who gave a very enlightening talk on the efficacy of mind-body treatments, the reasons they are not currently recognized by mainstream medicine and how to overcome those obstacles. I made a beeline to her afterwards and hope to work with her to get ABM covered some day in the future.

But what struck me over and over again at this workshop was how far Malachi and I have come since the one in April. Perhaps it struck me so hard because I really haven't felt like I was moving forward very quickly at all towards my goals. It took being in such a similar situation to realize how really different my circumstances were from the last time we were there.

For starters, I felt like I knew almost everybody at the workshop and if I didn't know them, they sure knew me. One woman stood next to me in line for the restroom and said she'd read all of my blog and that my honesty had helped her immensely to feel like she wasn't the only one feeling the way she did about being a special needs mom. Another cluster of a half-dozen people came from Malachi's Early Intervention program. Another man I met on Malachi's very first trip to California told me that during the group luncheon (that I didn't attend), Anat was singing my praises for creating dialogue among parents and caregivers on a forum I started — again, about six months ago — that has since swelled to nearly 500 members. In fact, the whole damn workshop was orchestrated by Malachi's primary practitioner Joanna Cutler who wouldn't have even been trained in ABM if I hadn't introduced her to Kathy Shean Jones, our other practitioner.

In so many ways that I could see and probably other ways I couldn't see, that event would not have been possible without me.

You may think I'm being very arrogant and egotistical when I say that. After all, I had zero part in what I'm sure was a ton of work to put on this workshop.

But in fact, for me, this realization of how many waves my little drop has made is incredibly humbling and awe-inspiring. Why? Because, and I mean this very seriously, almost every single one of the things I did to set those balls rolling I did in my pajamas.

I mean it. In my pajamas, I whine online. In my pajamas, I argue with Early Intervention therapists who come to my house early in the morning. In my pajamas, I drag myself and my two sons to ABM lessons and whine and argue some more with them.

Let me tell you. I don't feel a divine edict. I don't feel like anything I'm doing is making a difference. And I certainly never feel like I'm doing enough or doing it well enough.

And yet, somehow over the course of time, all of these little droplets came together and joined with other people's little droplets and before we knew it we were riding a river of action.

It's so remarkable that I want to run outside — in my pajamas — and shake people by the shoulders. "Don't you see what this means?" I want to yell at them. "I'm nobody! Nothing! I have no special power at all to make any sort of change and yet I did! All I did was tell my story over and over again to anyone who would listen. That's it! That's it. And look what happened! Look what you — yes, YOU! — can do just by telling your story! Isn't it amazing????"

I mean, isn't it?

Who knew how much power there was in simply talking about your own experience? And that is one thing that almost everybody can do.

Try it yourself. Tell the full truth and nothing but the truth and see where you get six months from now. Just try it. You'll be amazed.

Monday, November 12, 2012

'Dark & Light' Release Party!

My current life in a nutshell: children's books, adorable-yet-out-of-control twins
 and a fun-loving husband who does silly things like grow a weird mustache for "Movember."


A strange and wondrous thing happened yesterday. About 50 amazingly kind and generous people packed into a tiny bookstore in Southwest Portland to celebrate the release of MY book, "Dark & Light: A Love Story in Black and White."

No, seriously.

It wasn't just a dream I had that I was a successful published author. I even have pictures to prove it. See?






(New or irregular readers: Dark & Light is — all modesty aside — a beautiful and surprisingly profound board book I wrote, illustrated and published as a fundraiser for my son's medical costs. Check out the full version here and feel free to virtually join in on the release party by picking up a couple copies! With simple, progressive images and a multi-faceted storyline, kids and adults of all ages love it!)

I also gave a quick plug for my novella: A Twist of Fate (available in paperback or ebook)!



One of my favorite parts was seeing how my boys just took it all in stride. Like: "OK, cool, yeah, let's all have a big party in this strange place and mama will read us our favorite book. Awesome! That's not weird at all." During the reading, the guys even said some of the words along with me and grinned when I did the sound effects for lightning, just like we do at home.



In fact, several times during the Q&A period, I would start gesticulating with the book and Malachi would get all excited. "Mama's... book... again... please! Read. Again. Please!" he said in his trademark slow and careful diction.

For my introduction, I tried to write a very short speech so that I would remember it, but alas. Paragraphs became blurted-out, run-on sentences, my proverb probably didn't make any sense and I had to pause several times in a failed attempt to keep tears from running down my face. Ah well. At least the Q&A went OK.

For those of you who weren't there, you can pretend that this is how my speech went. Those of you who were there, this is what I wanted to say:


Thank you all for coming. In particular, I'd like to thank my husband who has sacrificed as much if not more than I have to let me follow my dream. I want to thank my family, especially my mother-in-law who takes the boys so that I can work on this project. I wouldn't be the person I am today without them and this project could never have happened without their support.

One of the reasons writers like writing is because they hate speaking. (pause for laughter) They also like writing because it's much easier to revise and tinker and say exactly what it is they want to say.

But perhaps the reason we most like writing is because, unlike speaking, it is an activity that often gets better when we cry. It's funny how our fingers can convey so much more of what's in our heart when we let loose the emotions that shut off our vocal chords.

So, I'm going to do my best but you'll have to bear with me.

There is an old Chinese proverb... that I don't know very well and might not even be a Chinese proverb. So, I'm going to butcher it for you. But it's OK because I'm a writer. I get to call it "poetic license." It's one of the perks.

Anyway, it goes like this: A master and student are talking and the student says: "Master, what does Hell look like?"

"Hell is six people sitting around a round table. There is a huge, delicious buffet in front of them but they are only allowed to eat it with six-foot chopsticks. No matter how hard they try, no one can get the food to their mouths so they are all starving and miserable and full of unrequited desire."

So the student says, "But Master, what does Heaven look like?"

"Heaven is much the same. There are six people sitting around a round table, a huge buffet in front of them that they are only allowed to eat with six-foot chopsticks."

"That's awful, Master!" the student exclaims. "Why would people starve and be so miserable in Heaven?"

"Ah," says the Master. "In Heaven, the people do not starve. They are full and happy. In Heaven, the people cooperate. Each diner feeds another from his chopsticks and no one wants for anything."

That is how I feel about this project. Through your cooperation and support, you all have turned my Hell into Heaven, a curse into a blessing.

Thank you for your support. And please remember that if the story of this book resonates with you it will resonate with your friends, too. Do them a favor and let them know about Dark & Light so they can pick up their copy too!

Thank you!



P.S. Special thanks to Jessie Kirk and Laura Stanfill for the photos you see above! These baby-totin' mamas both did — and regularly do — incredible work while simultaneously caring for two young children.  In fact, the weekend before, Laura held her own release party for Brave on the Page, a remarkable and fascinating collection of interviews and essays from Oregon authors (including yours truly!).

Mama power!


Monday, November 05, 2012

Bugs, Butts, Monkeys and Skeletons
Happy Halloween!

This Halloween was the best so far. The boys got introduced to the idea of going around to neighbor's houses, knocking on the doors and then NOT going inside. Apparently that is the trick. 



My little guys were matching skeletons, as you can see from this ridiculously cute picture. (They both decided to play with their belly buttons at the same time while watching Blues Clues. So stinkin' cute.)


Get a load of the look on JJ's face. Watch out ladies!

Matt and I were both generic black Halloween-y-type-things. The creativity of Halloweens past was tamped down this year by the release of my board book Dark & Light: A Love Story in Black and White. More on that later. 




Here's the guys Trick-or-Treating. We revived their monkey jackets from last year as they still fit and it was too cold for just the skeleton suits alone.

Once we got back from the few houses we went to, JJ pulled the lid off one of the jack-o-laterns on our porch while I wasn't looking and said "Oh. Ants." I turned around and saw his tiny little hand covered in black sugar ants and I said "ACK! ANTS!"

JJ, however, wasn't the slightest bit perturbed. The ants are gone now — likely irritated that a giant ruined their meal — but JJ still pulls the lid off the small one every time we go outside and proudly says: "Ants!" And then he pulls the lid off the bigger one and says: "No ants."

Turns out candy makes Malachi into a thesaurus. After one or two rather sugary fruit snacks and a single Kit-Kat stick, he said: "Candy! So delicious! ...So good! ...So tasty!"

He also made his very first butt joke, which really ought to be a milestone in one of those silly developmental tests he always has to take.

My husband was saying: "Oh my gosh, oh my gosh."

Malachi interjected — arching his entire body, so we knew he had thought of something exciting —  with: "Oh... my... ... ... BUTT!"

Uh-huh. Them's my boys. Talkin' 'bout bugs and butts while dressed as monkeys and dead things. 

Sunday, November 04, 2012

"Pi-cher, mama" (Silent Sunday)

"Pi-cher, mama," is JJ's new favorite saying.
My budding photographer, apparently.
He also loves: "Wassiss Sis?" (What is this?)

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