Wednesday, May 30, 2012

REVIEW: My Stroke of Insight by Dr. Jill Bolte Taylor




One of the many serendipitous things I experienced on our medical trip to California was finding a copy of Dr. Jill Bolte Taylor's My Stroke of Insight: A Brain Scientist's Personal Journey at the airport. This book was a fascinating read and I strongly recommend it.

Dr. Taylor's firsthand account of the experience of a stroke made me really "get it" that people with brain disorders simply see the world in a different way and that really, honestly and truly isn't a bad thing. As she says:

"This experience of losing my left brain has opened my mind to look more positively at people who have experienced various forms of brain trauma. I often wonder, in the absence of language or the ability to communicate with others in a normal way, what insights or abilities has that person gained? I don't feel sorry for people who are different from me or perceived as not normal anymore. I realize that pity is not an appropriate response. Instead of feeling repelled by someone who is different, I am drawn toward them with kindness and curiosity. I am fascinated by their uniqueness and compelled to establish a meaningful connection, even if it is merely direct eye contact, a kind smile, or appropriate touch." p. 150

In fact, Dr. Taylor describes — in no uncertain terms by the way — the sudden silence of her left brain's judgmentalism and incessant brain chatter as being euphoric.

(Of course, it was also life-threatening, so she sat for hours trying to remember which squiggles on the phone's keypad would bring her help. In fact, based on her descriptions, I feel it's important to mention that in addition to the signs of stroke we typically hear about — problems with speech, tingling or numbness, problems remembering, being off-balance, having a killer headache or problems with your eyes/vision — if you suddenly and inexplicably feel like you are on a drug trip, call 9-1-1 before you forget what numbers are or what a stroke is.)

I found this book truly engrossing. Because of Dr. Taylor's eight-year journey to a complete recovery, she is able to describe the experience of a brain injury from a point of view I can understand. It also made me realize that people with cerebral palsy and stroke victims are not that different from each other and should share resources and research.

Speaking of research, many of the passages made me think of the Anat Baniel Method and its approach to treating brain disorders. I'd like to share a few of them with you:

• "I wanted the doctors to focus on how my brain was working rather than on whether it worked according to their criteria or timetable." p. 78 
• "I realized that morning that a hospital's number one responsibility should be protecting its patients' energy levels." p. 81 (As a former two-week resident in a hospital, I whole-heartedly agree.) 
• "Because of my heightened empathy, I found that I was overly sensitive to other people's stress. If recovery meant that I had to feel like they felt all the time, I wasn't interested." p. 82 
• "... I had to completely inhabit the level of ability that I could achieve before it was time to take the next step. In order to attain a new ability, I had to be able to repeat that effort with grace and control before taking the next step." p. 90 
• "The process of physical recovery was just like the stages of normal development. I had to go through each stage, master that level of ability, and then the next step unfolded naturally." p. 93 
• "In my opinion, the purpose of medical treatment is to increase our ability to share a common reality." p. 158 (Emphasis mine. I think about this over and over again. She's absolutely right.) 
• "A lot of stroke survivors complain that they are no longer recovering. I often wonder if the real problem is that no one is paying attention to the little accomplishments that are being made." p. 95 
• "Although it was helpful for people to correct me, it was vitally important that no one either finish my sentences or constantly prompt me." p. 102 
• "I desperately needed people to treat me as though I would recover completely.... The brain is a marvelously dynamic and ever-changing organ." p. 111

May is National Stroke Month. It's almost over, but guess what: your cardiovascular system doesn't know that! You can still learn all about stroke, its causes and your own risk factors by visiting the American Heart Association/American Stroke Association.

For example, I learned that my home state of Oregon has a higher rate of stroke than the national average. About 6 percent of Oregonians die from stroke and 3 percent of adults are stroke survivors. Then I went ahead and found out that people with migraines with auras — like me — are at a higher risk of stroke.

Oh, I realized. This isn't just about Malachi. Brain problems could be part of my reality one day, too!

Learn about your risks and what a stroke feels like at StrokeAssociation.org.





Our Kickstarter campaign is off to a great start! Help me spread the word and get your copy of Dark & Light: A love story for babies in time to qualify for free shipping!!

Tuesday, May 29, 2012

What 3,000 high school students taught me about the gift of giving



The moment when I was at the center of 3,000 people standing to say they wanted to help my family taught me a lot.

It taught me that I need to get over my inhibitions about fundraising for Malachi, because it's not about me, it's about him.

It taught me that almost nobody will help if you don't ask, but EVERYONE will help if you do ask.

It taught me the strength in numbers and the immense and universal power of compassion.

It taught me that it is really not about the money. None of those people had to donate a penny to make me feel their charity of spirit and none of them was pledging to buy more than a $1 raffle ticket. It didn't matter. Just knowing that people cared enough about our struggle to stand with us overwhelmed my sense of relief and gratitude.

It taught me the truth behind the statement I saw on a church billboard recently: "For someone to feel the gift of giving, you must receive." What if I had turned my back on the Sparrow Club, and said: "Thanks, but no thanks. We're going to do this on our own"? That moment would have never existed. Those kids would have never felt the power of standing together like that. They never would have seen how profoundly their simple act affected me and how much good they can do for a real person just by donating a buck. They would never have felt how awesome it feels to give if I hadn't been willing to receive.

A fabulous blog called Momastery also made this point recently, saying about its recent fundraiser that it really wasn't about the recipients.

"It’s for all of us to learn how powerful we each are, how much we have to offer even with the little we have. We are all in bits and pieces and when we offer our bits and pieces -MASTERPIECES are created!!!!"

It's really true. It feels good to give. It feels good to lend your arm in someone else's push up the hill. In fact, in the last month, I myself have given modest amounts to several campaigns, which is something I really haven't done in the last couple years. Especially since I found out we were having twins, I've been extremely cautious about money and certainly didn't feel like I had enough extra to give away. But those kids taught me that the act of giving BY ITS VERY NATURE means that you have enough. You simply cannot get that feeling from hoarding, or consuming, or even acquiring more money.

How many times have you heard someone richer than you complaining that they don't have enough? They're not lying — they really feel that way. That right there should make it obvious that it's not about reaching the next payday or the next tier of socioeconomic status.

It's not about what you have. It's about what you willingly give away.


Will you stand with those kids? Do you want to discover how great it feels to be part of our little "masterpiece"? Join our Kickstarter campaign! Or join some other cause! Seriously! I don't care who you give to, just give and revel in the feeling!

Monday, May 28, 2012

Good book, good cause

My heart is so wrapped up in this announcement that I can feel it beating through my fingertips.

I have been sitting on a ready-to-launch Kickstarter campaign for almost a month now. Contained within it are my two biggest hopes in my entire life — to become a published author and for Malachi to get the help he needs to become as independent as possible. As I have mentioned several times before, I believe the Anat Baniel Method (ABM) is our best chance at the latter, but it is prohibitively expensive.

So here's my crazy, imperfect, pie-in-the-sky, Dear-God-please-let-this-work idea:

I wrote and designed a children's book, which I will sell through Kickstarter, to pay for Malachi's treatments.

Ladies and gentlemen, I am proud to present, for the very first time, for your viewing pleasure, Dark & Light: A love story for babies.



Malachi and JJ love to have it read to them over and over again, but more importantly, I enjoy reading it! The black and white images are simple enough that even a newborn will find it interesting, but the story is complex enough that an adult will enjoy reading it again and again... and again.

Anyway, you can (and should!) read more about it on my just-launched Kickstarter page. For those who haven't heard of Kickstarter, it is a way for creatives and inventors to raise the start-up capital needed to launch a product. In my case, I need to find at least 500 people interested in buying a copy of Dark & Light. If I don't raise at least $5,000, the project is dead and no money or books change hands. If I do, Malachi's future will suddenly brighten considerably.

Let me be absolutely clear on this point: ALL royalties from the sale of this book will go exclusively towards Malachi's medical needs. I have mentioned before how uncomfortable I am at the idea of fundraising but how desperately Malachi needs the money. If this project goes viral or is popular enough to attract the attention of a traditional publishing house, it very well could become a perpetual source of income for a problem that is not going to go away — instead of spending my life fundraising. Do you have any idea how wonderful that would be?

I am ignoring the voices in my head that say this unconventional approach is doomed to failure. I am taking the leap of faith that this will work and that dreams do come true.

You can be a part of my dream. In fact, you kinda have to. I most certainly can't do this alone. Please check out my Kickstarter page and watch the video of the book. If you like it, please buy a copy and then tell a friend.

Combined, our efforts will make a lifetime of difference to one very special little boy.



(You better believe I held my breath and closed my eyes when I pressed publish.)

Friday, May 25, 2012

Where did my babies go and what are these big kids doing here?

For twelve long years I was the youngest member of my extended family, not to mention six years younger than my siblings.

I got really tired of everyone treating me like a baby. And I really couldn't stand how every single person at every single family reunion would be so shocked to discover that I aged at the same rate as everyone else.

When my cousins were finally born, I vowed to age them in my memory so that I wouldn't be as surprised every time I saw them. (I was mostly successful, but the fact that one is now looking at colleges makes me feel incredibly old.)

For my own kids, I see them every day so you would think it wouldn't be a problem to keep tabs on their aging process. But here's the funny thing about your brain — neurons don't really age. This is why you can feel pretty much the same on the inside at 27 as you do at 72. The only thing that changes neurons is when you pay attention and then click! a new connection in your neural net is formed.

So I admit it's entirely possible that I feel this way because Malachi and JJ just got new haircuts on Monday, but I swear this week they are suddenly and irrevocably not babies anymore.

Overnight they have become interested in activities that I expect will continue on in some form or other for the next 10-16 years — play-fighting, saying "no," giggling at each other's silliness, asking me to turn on our (rarely watched) T.V., coloring, screaming, confidently grabbing my car keys, etc.

JJ (this is what we now call Jaden since we are annoyed at how many Jadens and Jaydens and Jaidens and Aidens and Haydens and Cadens and Bradens there are) in particular does all sorts of things that he didn't do last week. Yesterday, he gave me his first kiss ...and it didn't even matter that his face was covered in peanut butter at the time. He also follows me around going: "Mom, mom, mom." And — joy of all joys — I was treated to his first major temper tantrum... in a grocery store. This was not the whiny crab-apples attitude that may indicate boredom or hunger or sleepiness; they had just ate and slept. This was a full-scale, thrashing-around-in-my-arms, screaming-bloody-murder tantrum.

Why? Because I made him stop hurtling around the store with his tiny shopping cart for a second so I could look at tomatoes. I'm thinking this kid has got some major road rage in his future.

Sorry, buddy, you're not getting my car keys.

Ever.


Tuesday, May 22, 2012

11 questions (Part Two)


Yesterday I posted the first part of this 11 Questions meme, in which I told you 11 random things about me. This was one of them:




I also posted 11 questions for 11 blogger friends. Here are those blogger friends in case they have already posted their answers or if you just wanna check them out!

http://trousdellfive.blogspot.com/
http://teamaidan.wordpress.com/
http://our3littlemiracles.blogspot.com/
http://cpdailyliving.com/
http://www.myangelhascerebralpalsy.com/
http://elliestumbo.blogspot.com
http://nisha360.com/
http://azisamazing.blogspot.com
http://laurastanfill.wordpress.com/
http://birdonthestreet.com
http://colofisch.blogspot.com


And finally the event we've all been waiting for! Here's my friend's 11 questions for me and my answers:

1. If you could change one thing about yourself, what would it be and why?

I would be more patient. It seems like a lot of the problems in my life stem from impatience.

2. Name the song that most motivates you and explain.

Oo, so many good ones to choose. I actually made three mixed CDs in my high school years called "Happy" that were just collections of motivating songs, like Bill Withers' "Lovely Day," The Rascals' "It's a Beautiful Morning," and Katrina & The Waves' "Walking on Sunshine." I haven't listened to those CDs in forever though. I'm pretty sure they've all been stolen in various car prowls. Ironically depressing.

Right now, I guess I would say my biggest motivating song is on a kid's CD of They Might Be Giants called "Impossible." For better or worse, I feel like it's my mantra for Malachi overcoming his limitations.
Well, they said I was impossible.
Yes they said I was impossible
and that someone who behaved like me
couldn't be, couldn't be.

But I knew that I was possible,
not completely unbelievable,
and the one they said could never be,
it was me, it was me

3. If you could start a new career easily, what would your dream job be?

A bestselling author. I would really love to write full-time.

4. What kind of car do you drive and how did you choose it?

HA. "Choose."

I drove a 2004 VW Golf TDI until a couple months ago. You can read about its massive pain in my rear end here. Now I'm back to the 1995 Toyota Corolla until it dies. I don't want to think about what will happen then. I think it involves the public transportation system.

5. What did you want to be when you grew up?

HA, again.

I wanted to be a physical therapist. Can you believe it? I guess I got my wish, huh? Even Malachi's PTs say I should do this for a living.

But when I was little, I didn't actually know what a physical therapist did. At some point, I told my brother, who is six years older than me, that I wanted to be a therapist, probably because I wanted to help people, and he said "Oh, no, no, you should be a physical therapist because they make more money." I thought that sounded good and basically figured a physical therapist was a therapist that helped people (psychologically) through movement.

Funny how life has all these little ironies and coincidences.

Anyway, somebody eventually told me that physical therapy had to do with sports and I was out. Then I decided I wanted to be an author and I've wanted to write ever since.

6. What is your favorite film from the past five years?

Hmm... I can't use my pat answer of Kenneth Branagh's "Much Ado About Nothing," since that was much longer ago. Was WALL-E less than five years ago? I really liked that movie. Everything about it was great.

7. Coke or Pepsi (or “other”)?

I've inherited a Diet Coke affiliation. My mom hardly ever bought soda and I tend to only drink it when I'm out, but my husband's father drinks gallons of it and so would my husband if I kept it in the house. Every once in a while I'll buy a 12-pack of Caffeine-free Diet Coke. I usually get one before it's gone.

8. What’s the most ambitious item on your bucket list?

Probably visit India. I traveled a lot in college and younger, so I don't consider this very ambitious, but the more I get tied down with family and financial responsibilities I realize it's much further out of reach than I gave it credit for.

9. What is your favorite quote?

Well, that's pretty obvious; it's right up there in my banner:

"Whether tis nobler in the mind to suffer the slings and arrows of outrageous fortune or, by opposing, end them."

I really find I go back to it again and again through this journey with CP. Is it better to "fight" the CP in hopes of "winning" or is it better to just accept it and move on even if that means less functionality in the long-term?

10. Morning person or night owl?

Night owl. For sure.

11. What is the most difficult thing you’ve ever faced or done?

Sacrificing my career and, well, everything and concentrating my whole being on keeping two babies inside me passed the risky 28-week mark. Succeeding in getting them to 30 weeks and having doctors reveal a month later that despite my "success," one has completely amorphous, undefinable brain damage and they have no idea why, so therefore it could be my fault.

I've written a blog about it. You should check it out. ;)

Monday, May 21, 2012

11 questions (Part One)

OK, so yeah, this is nothing more than a glorified chain letter, but it's fun and I actually spent a lot of thought and time on it, so deal with it.

A million years ago, Andi from Bringing the Sunshine tagged me in an 11 Questions post. The meme goes that you say 11 random things about yourself, answer 11 questions, ask 11 questions and then tag 11 other bloggers to answer those questions. To me, that seems like an extraordinary number of requirements, which is why it took me so long to respond! Somebody should change it to the "3 Questions"!

Like Andi, I'll break mine into two parts. Today I’ll post my 11 Random Things, tag a few of my favorite bloggers and my 11 questions for them. Tomorrow I’ll answer Andi's questions for me. First...

The Rules

1) Post these rules.
2) Post 11 random things about yourself.
3) Answer the questions set for you in the post of those who tagged you.
4) Create 11 new questions for the people you tag to answer.
5) Go to their blog (or email them or tweet them) and tell the people you tagged that you’ve tagged them.
6) No stuff in the tagging section about “you are tagged if you are reading this.” You legitimately have to tag 11 people.

Now...

11 Random Things:

1. I have eight trees on my property, but only one of them is over 10 feet tall.

2. I made my husband return my engagement ring and buy me one that was smaller.

3. I went to a Japanese-immersion elementary and middle school.

4. My favorite "bachelorette" meal was a loaf of French bread, some exotic cheeses, too much wine and just enough dark chocolate.

5. I dislike tropical fruit of all sorts. Yes, that includes pineapple.

6. I have no full siblings, but was raised the youngest of a half-sister and a half-brother who are the same age (sort of like twins, hmm...) but not blood-related to each other.

7. As of this writing, I have 38 unread messages in my inbox.

8. My skin never tans. I burn, I gain a few freckles, and then I go back to pure white again.

9. My favorite donuts are Bavarian creme, just in case you want to get me some.

10. I used to be horse-crazy and owned a Morgan (that's a horse breed in case you don't know) named Darius.

11. This:




11 Bloggers: You've Been Tagged!*

http://trousdellfive.blogspot.com/
http://teamaidan.wordpress.com/
http://our3littlemiracles.blogspot.com/
http://cpdailyliving.com/
http://www.myangelhascerebralpalsy.com/
http://elliestumbo.blogspot.com
http://nisha360.com/
http://azisamazing.blogspot.com
http://laurastanfill.wordpress.com/ <-- (the only one on this list not-CP-related. Hmm... I think I need to branch out a little more.)
http://birdonthestreet.com
http://colofisch.blogspot.com


My 11 Questions for you!


1. What products do you have in your shower?

2. What one frivolous (not essential to survival) thing would you want with you on a desert island?

3. What's your favorite throw-together meal?

4. If you could only visit one restaurant for the rest of your life, which would it be?

5. What color is your favorite pair of shoes?

6. Dogs or cats? (Or, "other"?)

7. Describe a moment, however brief, in the past week when you felt joyful.

8. You have an entire day off from responsibilities, but you can't spend any money. What does your free dream day look like?

9. If you had $1 million to give to charity, what cause would you give it to?

10. What is a picture that you wish you had? Either a moment in time that wasn't captured, a picture of a person passed or a place in the world? Anything you would like an image of.

11. Would you rather have a blanket made of the softest material imaginable with a stone bed or a rough, scratchy blanket with a gloriously soft and cushy bed?




Check back tomorrow for my answers to Andi's questions!

* If anyone out there is upset that they didn't get tagged, feel free to pretend like I tagged you and answer these questions. I definitely want to hear your answers. I literally just sort of went down my RSS feed to choose bloggers, so I'm sure I'm forgetting someone.

Monday, May 14, 2012

Dear Glee, please do for disabled kids what you've done for gay kids

Every television show has its point to make. Some make theirs better than others.

FOX's Glee has done a particularly good job of not only having engaging characters, story lines and music numbers, but having a message about what life is like for many gay kids and what it could be like. I have very much enjoyed the exchanges between Kurt, a flamboyantly gay kid, and his blue-collar father. The conversations between them have been refreshingly healthy and honest. Kurt's father can be ignorant and Kurt can be a little too self-righteous but they clearly both respect and love each other deeply.

NPR recently noted that Glee, along with Will & Grace, has had a significant impact on American attitudes towards homosexuality and gay rights issues. American families see an example of a sympathetic and genuine gay character and realize their stereotypes and demonizations might be flawed.

So I applaud Glee for its work in opening minds in this area and I hardly want them to stop. But I do think it's time for them to focus a little more on a different character and his unique struggles in high school.


This is Artie Abrams, a guitar player and background member of the Glee cast. He is played by former boy band member, Kevin McHale. Unlike other bloggers, I'm not going to opine the fact that McHale himself is able-bodied. Yes, they did miss a chance to give a disabled actor a good role — and it's not like visibly disabled actors can play able-bodied characters! — but an actor's fundamental job is to portray characteristics, not possess them himself. I wouldn't expect only gay actors to play gay characters or teenagers to play high-school-aged characters.

The focus should be on the writing and it is here that the otherwise remarkably adept Glee creators have fallen down. Artie is rarely a showcased in an episode, but when he is it is on episodes like "Dream On," in which he dreams of dancing. The entire episode is predicated on Artie feeling sad that he can't walk and ends with an insinuation that he will lose his girl to a boy with more physical prowess (which he eventually does). Instead of taking the opportunity to create a nuanced narrative — as they do with Kurt — showing how his difference is at once very difficult but also a key and inherently lovable part of his identity, Glee goes with a hopeless "cure" narrative.

They even include a a dream sequence in which Artie is able-bodied instead of using the opportunity to highlight a very cool sport called wheelchair dancing. Here's a taste:




I believe it is possible for shows like Glee to normalize disability.  Friday Night Lights, for example, did a MUCH better job of portraying the complexities of life with a wheelchair. For one, they showed the character OUT of his wheelchair, showing how it is simply a tool he uses and not part of his personality. Unless I'm mistaken, Artie has never been seen out of his wheelchair except in that dream sequence.

But, you might say, why are you picking on Glee? There are tons of other shows on TV.

True. The trouble is that Artie is one of only five scripted main characters with disabilities on network television. At least Glee is evolved enough to even represent people* with visible disabilities, who account for 12 percent of our nation's population, but less than one percent of television characters.

That statistic, by the way, is originally from a study conducted by GLAAD, a gay rights group.

See, Glee writers? Even GLAAD knows we gotta stick together; treat everyone as good enough just as they are.

As the disability rights campaign I AM PWD (Inclusion in the Arts & Media of People with Disabilities) says:

"In the same way that a more accurate representation of the American Scene has led to changes in attitudes toward LGBT people, the inclusion of people with disabilities in popular entertainment has the potential to make a difference."




* Glee also has two minor characters with Down syndrome and I don't think they've done a very good job representing their complexities either, but I decided not to get into it here.

Friday, May 11, 2012

Happy Tears

I held it together pretty well until he asked them to stand.

We were at David Douglas High School, a large local high school in our neighborhood. We had to wait until the end of the assembly, so it was all I could do to keep my kids entertained while an impressive array of music and athletic awards were announced. Then it was our time. I hoped I looked appropriately grateful, appropriately needy, appropriately whatever.

The coach walked to the center of the gym, packed to the rafters with all 3,000 students, and I followed with my double stroller and matching twins who don't quite match.

He talked about the Sparrow Club and how Malachi has cerebral palsy and how they're raising money for our medical costs and how ticket-holders can win prizes, etc., etc. Then he did something I was not prepared for.

He said: "Anyone in this room who would like to help out this family, I'd like you to do one thing right now. I'd like you to stand up."

Group by group, in rapid succession, they all did. They all did. I clutched my child in the middle of a gymnasium with 3,000 people — almost all teenagers, often stereotyped as self-absorbed — saying with their entire bodies that they wanted to help.

I was so overwhelmed, I regret to say I couldn't even really look at them.

But for the first time in a very long time, I didn't feel like a victim. I didn't feel lost and out of control. For the first time in a very long time, I cried tears of joy and gratitude and relief. I marveled at the exquisite beauty and immense power of human compassion. I marveled that so many people from so many cultures, political persuasions and backgrounds could all agree on one thing: Yes, I want to help you.

They know nothing about us. They met us literally minutes ago. But they want to help simply because someone had the temerity to ask.

As we left the building, the coach apologized. He said he hadn't meant to make me sad. It took me a minute to figure out what he meant.

"Oh, no," I said, thinking of all the times I'd cried since Malachi's diagnosis, "these are happy tears. There haven't been many happy tears these last two years."

And then I said: "Thank you."

Thank you, David Douglas students. Thank you for allowing me to cry happy tears.

Tuesday, May 08, 2012

ONE-HUNDRED-THOUSAND PAGEVIEWS!



WOW!!!

I remember back when I first started this blog, looking with envy at a ticker that read 50,000 pageviews. Man, I thought, that will take forever. But just a year later, here my ticker is with twice that!

Thank you from the bottom of my heart (where all the sincere stuff is, not like that top of the heart nonsense) to everyone who clicked, shared, followed and blogrolled our way to this exciting milestone. I couldn't have done it without you!

(Well, I guess I could have, but it would have been really boring sitting there and pressing reload 100,000 times. This way is much better.)

Let's see how long it takes us to get to 200,000! If you read regularly, become a follower! If you have a blog, put it on your blogroll! If you see something interesting, share it!

Thanks again!

Sunday, May 06, 2012

Our therapy trip to California


I'm happy to report the feeling of providence continued on our trip to the Anat Baniel Method Center in San Rafael, California. Everything went as well as could be expected, the weather was beautiful and Malachi made some important gains.

The trip even started with a pretty amazing coincidence. 
At the Portland airport.

I've never flown Southwest before so I didn't know that they don't have assigned seating. I showed up a little late to board and was dreading finding an aisle seat next to people who would roll their eyes at the sight of a baby. But the first aisle seat I found was next to none other than a woman flying alone with a baby and a little girl. 

This is perfect! We'll be the baby row and we won't care that the other baby is crying because we're moms and we got over that a long time ago.

So I settled in, trying to find Malachi's bottle for take-off and chatting with the other mom. But then a stewardess showed up and said I had to move because we couldn't have five people (two lap babies) in a row.

Drat. I guess I have to ruin somebody's day. 

The stewardess found an empty middle seat, asked the people there if they would mind if I sat there. They didn't. I sat down and as I was still trying to find that damn bottle, the woman sitting next to me said: "Oh, hi, Shasta."

Whaaaaat? 

Turns out the stewardess sat me next to a family friend! A very warm person and a retired pediatric physical therapist to boot! We had a wonderful time chatting about our trip and ABM while Malachi drank his bottle and then promptly fell asleep for the entire plane ride!

Exactly the expression one should have
getting into a shiny black Town Car with
a private driver (remarkably,
the cheapest option available).
When we got to the airport, baggage claim was a breeze with my friend helping me and my driver found me before I even had a chance to look for him. He led us to a very posh Lincoln Town Car with chilled bottled water. Malachi was in a very cheerful mood and the trip to Vacaville passed uneventfully. 

Once we got settled, we headed to the grocery store where I found a very cool shopping cart fitted with a bucket seat that was perfect for Malachi. (Maybe other places have these, but I haven't needed to look for them before since I'm always carting around a double stroller.)

Malachi had an incredibly fun time pointing out the aisle numbers every time we passed under a sign. He and Jaden know several numbers and letters already — I know, right? they're freaking geniuses — including 1, 2, 3, 6, 8, A, E, O and S. Eight was Malachi's particular favorite this time around and he got very good at saying it — "aaaait!"

We also had a great time on our various adventures in between lessons at the center. Either while Malachi was napping or before bed we visited: 

Golden Gate State Park

Jelly Belly Factory


CAAANDY!!!


Bumper-to-bumper traffic in the middle of NOWHERE.
Really, California, really?

The only consistent downside — aside from traffic, see above — was that I had to do without a feeding chair on this trip. Instead, I brought in his carseat and propped him up with towels, but with his newfound mobility he would often try to launch himself out of the chair in pursuit of wayward Cheerios. Which brings me to...

...what can he do now???

First off, he's babbling a lot more and can say about a million new words. I should have been writing them down, but honestly it's probably too many to count. He tends to say just the end of a word and over-emphasize the vowel sound — in fact sometimes it seems like he will start with a vowel sound instead of a consonant, such as "ama" for "mama." I can tell that it's not quite the same as how Jaden speaks, but I would say he's caught up in the number of words he can say. The other night while reading a book with lots of pictures of various objects, he pointed to several and spontaneously said their names.

As far as his body, the primary difference I see in Malachi is that his body is waaaay looser. I didn't even realize he was spastic until now when I can feel a dramatic difference in how much floppier he is. I can pick up his leg and move it any which way or place it under his bum in a pretzel and it can stay there instead of springing back. The change in his muscle tone alone seems like a research study waiting to happen. Any doctor would be able to feel the difference from last week to today.


Not the most illuminating picture, I know.
It was hard to take pictures and videos of the sessions because Malachi would stop paying attention to the lesson and immediately start whining for my phone if he saw it.
The other changes are less dramatic, but, as they say, any change means change is possible and can be built upon, so it's exciting nonetheless. In fact, I think I'm going through a similar process that Malachi is — learning how to make finer and finer distinctions about what he can do. Instead of only noticing and being happy with the giant milestones — rolling over, etc. — I can distinguish how much more fluidly he moves and how the quality of his coordination is more graceful.

I think of it like looking at a person who is riding a horse. If you're like most people, you can't tell by looking at someone sitting on a horse if they are an experienced rider or not, but since I loved horseback riding in my youth and paid an extreme amount of attention to it, I very definitely can. On the other hand, I certainly couldn't tell by looking at a golfer whether they have a good golf stance or not because I know nothing about golf. Seeing the efficacy of ABM is therefore as much about my ability to notice as it is about Malachi's ability to change. 

Sitting much straighter but look at those legs!!
Completely bent to the side and laying on the
table as if it were no big deal!
That said, I feel like I can see a lot more changes in him than when we went in October. For one, Malachi seems to have much more fine motor control in his left hand. He can sign the word for "different" with both pointer fingers instead of just one beating against his other fist. It also seems like he is able to put his knees out to the side in crawling a bit more and once in a lesson he even pushed with his knees in crawling and lifted his butt. In (supported) sitting, he has a noticeable lumbar curve — his back was flat as a board before. Also, his belly is rounder, (consequently his breathing is deeper and his voice louder) and he doesn't need to contract his tummy as much when he lifts his legs, sometimes not at all, and consequently he is kicking more while sitting. He can also use his arms without contracting his legs and feet nearly as much as before. During the last day of lessons, he also started spontaneously putting his hand down on the table when he felt he was losing his balance instead of tightening up and pulling his arms in.

These are all fabulous changes and I'm really excited about them. Are they miraculous? Is Malachi able to move radically differently? Is he going to crawl and sit up by himself tomorrow? No, no, and no. But they are enough that I think this trip has been a resounding success and we have decided to scour every rock, tree and bush for money to continue. They recommend we throw everything we can at it for the next three months. I have a lot of worries about how we're going to afford that and I dislike (to put it lightly) being put in the position of having to sacrifice so much, but I've decided it's worth it to put this method to the test for us once and for all.

A tired Mr. Crazy Hair McGee on the flight home.




BTW, a blogging buddy recently posted an explanation of ABM on her blog and I recommend you check it out if you'd like to learn more about it from a parent's perspective. I'm planning on doing another post about it soon — an expanded and more refined version of the one I did before or this other one I did before — but it's so nice when someone does some heavy lifting for you once in a while! :)

Thursday, May 03, 2012

Who is Malachi?

I haven't had nearly as much free time down here in California as I'd hoped, but I did find some time to write a long-overdue page devoted to cerebral palsy, Malachi and Malachi's cerebral palsy so that new readers can find an easy introduction to all this madness.

Check it out here. It will also be enshrined in the sidebar under my profile until the end of time in case you need to find it again.

Or, maybe you just want to look at a ridiculously adorable picture. No problem. I gotcha covered there too:

Jessie Kirk Photography

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