Sunday, September 30, 2012

Silent Sunday: I think I should sign all of my e-mails with this picture

Born to blog

Sunday, September 23, 2012

Silent Sunday: A trip to the tire store

Very low lighting, so not the best picture,
 but Malachi hates the flash so I had no choice.
Anyway, how stinkin' cute are these boys in tires??
It was JJ's idea.

Wednesday, September 19, 2012

Amazing before and after videos of a child with cerebral palsy crawling

Earlier, I posted videos of Malachi prop sitting for a full minute and also commando crawling around on his beloved new alphabet mat. And yesterday, I posted a full description of the many changes I saw in Malachi during our fourth trip to the Anat Baniel Method Center in California.

Today I have something really special. As I watched Malachi crawl around a few days ago, I remembered a video I tried to take for a very generous friend who sent us a new iPad for Malachi. I had wanted to show how the iPad was enough of a motivating force for Malachi to inch forward. And it was, but the video is so sad. Malachi looks more like a man dying of thirst crawling towards an oasis than a self-motivated and empowered little boy, so I decided not to send it.

But perhaps I took that video for a useful and joyful purpose after all. See for yourself:


The first video was taken Aug. 6, a couple weeks after returning from our third trip to the ABM Center.




This one was taken Sept. 16, a couple weeks after returning from our fourth trip.




This seems to me a remarkable difference in little more than a month. What do you think?

Tuesday, September 18, 2012

Going the distance

It looks like we are finally passing by some milestones on this long, long road.

Our latest trip to the Anat Baniel Method Center in San Rafael, CA., was during the last two weeks of August. We decided to drive down this time, taking two days each direction. Fortunately, I have family in various spots along the way, including a pretty good midway point, so we didn't have to pay for a hotel.

In fact, thanks to some really generous people who opened their doors to almost perfect strangers, we didn't have to pay for a hotel at all on this trip. For the first week we stayed at a blog reader's house in Oakland and for the second week we stayed in a distant relation's house just outside of Vallejo. Both places meant 45-minute commutes to the ABM Center in San Rafael, but it's not like we had anything else to do!

We did manage to stay busy anyway, of course, and even got in a little sight-seeing at the Golden Gate Bridge, the California Academy of Sciences and various other spots around the beautiful Bay Area.





In fact, my very favorite few hours of the entire trip was spent just off the freeway outside of San Francisco. We'd gone into the city to see a friend but the traffic to get back to the North Bay was absolutely atrocious. Instead of fighting it, I decided to take the road less traveled. The exit I got off at had this new American mall designed to look like an old European town square. I splurged on a gourmet pizza in an outdoor cafe and a glass... OK, maybe two... of wine to drink along with the fudge I had picked up earlier in Sonoma. With Malachi strapped to my chest in his sling, we walked over to watch the sun go down over the water, dancing around and giggling and not caring who saw. I called my husband and he said it was the most "like myself" I had sounded since I got there. I guess I needed the stress relief.

By the second week I was really dragging and getting a little tired of Malachi. I don't think I could be around anyone that constantly for that long, least of all a very needy 2-year-old. Unfortunately, though, I hadn't thought about this eventuality and didn't set up any sort of respite care plan for while I was down there. By the time I had a few names and numbers, it was too late. Something to remember for next time.

The lessons themselves went well. I managed to show up on time with a fed, bright-eyed and eager-to-learn Malachi to every single one of those 20 appointments.

Well... almost every single one.

For one afternoon session, Malachi didn't fall asleep for his nap until late, so I crept into the lobby with him in my arms, thinking the new environment would slowly wake him up. It did, but he was very groggy and soon fell back asleep. When our practitioner, Neil, showed up and began very gently working on his spine, Malachi lazily watched for a little while and then seemed to decide that that was just fine but he was going to continue his nap, thankyouverymuch.

(Man, I wish someone would give me a massage while I napped!)

Because Malachi was in my arms for the entire 45-minute session and because he was asleep, I got to be much more "in" on the action than usual. It was a truly remarkable experience. The movements were so slow and controlled. It looked like this beautiful, extremely slow-motion dance with a sleeping infant. So fascinating.

The next day, I ran into Anat Baniel in the parking lot and told her about the sleeping lesson and she said that indeed, they can do a lot of fine, subtle work while their clients are asleep, even things they can't do when they are awake. I'm guessing this is because their clients' conscious mind isn't around telling them what they can and can't do. Instead, the practitioners get to talk directly to their subconscious. It makes me infinitely curious what Malachi dreamt about during that time.



While I was down there, I kept a coarse list of notes on things Malachi was doing that seemed different to me than before. This is what it looked like by the end of the trip:

• Crossed legs (wide, relaxed hips)
• Reaching for toys
• Rolling onto tummy easier
• Able to play alone for a while
• Two- and three-word phrases (Malachi said "Apple juice, please," his first more-than-one-word utterance a few days before we left.)
• Lifting head when pull on arm. (This is something the practitioners do, and I'm sure there is a more graceful way to describe it. Basically, they pull on his outside arm to get him to come up through his side from laying down, and this was the first time he started to realize his head and neck needed to come along for the ride instead of lolling to the side or straining backwards.)

• Leaning forward in high chair (At right is the high chair. It has two triangles, labeled 1 and 2, on the very front when the tray is removed and it became a mealtime tradition for Malachi to sit forward and point out each of the triangles. He was definitely not able to lean forward in that chair like that during our last trip and I was amazed at how capable he was at preventing himself from toppling forward out of the chair.)
• Leaning on his arms more
• Able to prop sit for a few minutes (video here)
• Leaning on one hand and pointing or grabbing with the other
• Spine is very twisty, pelvis can rotate almost completely
• Butt comes up an inch in crawling at times
• Hands more open, especially flat on table
• Lifting head with arm and shoulders instead of lolling back, especially when get out of car seat
• Can drink water from straw (messily)
• Tugging on knees with feet flat (laying down), wiggles entire body through spine and weight through soles
• Sylvia (practitioner) says when she moves the upper back it "goes totally into the pelvis"
• Constipation improved (Believe me, this was not due to diet. It was pretty hard to get him to eat much besides PediaSure and cereal while traveling.)
• M attempts to close mouth or suck bottom lip to prevent drooling
• Chris (pracitioner) says hands and fingers are much "clearer"


Wow. That's the first time I've looked at the list in its entirety! Such great stuff! One thing I forgot to mention was that he can sit in a grocery cart seat now in what my husband half-jokingly calls a "pretty good impression of someone with trunk control."

And I can't believe I forgot the most exciting of all of Malachi's new developments! Behold:




Malachi can crawl now! And does so with greater and greater speed around our house! Though I often wallow in self-doubt about whether, how and how much ABM is helping, this is one thing I'm certain he would NOT be doing by now if it weren't for this method.

But as exciting and validating as our trip was, by the time August 31 arrived, we were ready to go home. And, indeed, that seemed to be in our fortunes as well.

Malachi's reads: "A new challenge is near."
Mine: "The road before you is long. Drive safely."

Farewell, San Francisco area. We'll see you again, soon, I hope.



This was our fourth trip to the Anat Baniel Method Center in San Rafael, CA. Click these links to read about the first ("On Our Way" and "Did it Work?"), the second ("On Our Way: The Sequel" and "Our Therapy Trip to California"), and third ("More Answers and More Questions After Our Third Therapy Trip to California".)

Sunday, September 16, 2012

Silent Sunday: Twins take a self-portrait

I'm not gonna lie, there's something a little creepy about this picture.
But they did take it themselves, so I find that adorable. 

Saturday, September 08, 2012

My son, the Olympian

As The 2012 Paralympic Games wrap up tomorrow in London, I am reminded of a notion I had a lifetime ago when the boys were small babies.

As I thought of the intense regimen of physical therapy that Malachi, as a special needs child, would endure throughout his young childhood, I searched for a comparison in the typical world and it occurred to me that the only typical children in a similar situation were those in China who train incredibly young for the Olympics. Even those children — enrolled in brutal, elite camps such as these — are given five or six years of semi-normal childhood before starting. Malachi — and so many special needs children like him — would begin even younger, as a baby. What sort of life would that be?

And what of us — his parents? We had never imagined ourselves as those demanding, sideline-waving parents à la Blades of Glory who endlessly push their child to unattainable heights; those parents who pour all their resources into their child's relentless pursuit of a place on the podium.

And if we were? Even if we became that? What of it? Malachi would have to endure all of that — thousands of hours of physical training, a stolen childhood, an ingrained inability to see any of his physical pursuits as just a game. For what? The slim, glimmer of a chance that he might simply walk? Nothing epic or record-breaking or glorious, at least not on society's terms. Just walk.

It certainly begs the question: What is the price of gold? And why should I pay it — why should he pay it — in exchange for lead?

Thursday, September 06, 2012

Audited

We're being audited for 2010.

No joke.

The year from hell. The year I hate to think about. The year I'll never forget. The absolute, worse year of my life.

I get to relive it, in tax-form.

I shouldn't be surprised. I myself have laid awake countless nights, auditing that year.

Was there something I could have done differently? Could I have prevented his brain injury? Did I contribute to it? Could I have improved his outcome if I had started XYZ earlier? What, please God, tell me, what was I supposed to do? And, dammit all, WHY didn't you answer my prayers???

Of course, the IRS couldn't have picked a worse year. I am meticulous about keeping receipts and filing away copies and all the things one is "supposed" to do. Except that year. That crazy year when, yes, Mr. Tax Man, we did suddenly go from having two incomes and no dependents to having one income and two dependents plus lots of medical bills.

Does that seem strange to you, Mr. Tax Man? I agree. It seems very strange to me, too.

Monday, September 03, 2012

I'm still alive.
Very much so.

I feel bad that I've written and shared so little with you all this summer. Ever since my Kickstarter project came to an end, I have been spending my blog-writing time STARTING A FREAKING PUBLISHING COMPANY but I feel guilty nonetheless. It's not as though I haven't thought of about a dozen post topics, but the time to write them eludes me. Even now it is 12:30 a.m. and I really ought to be sleeping, but I can't, so I write.

Things have been going very well for me this summer. My children are finally talkative and easier to relate to than the babies they have been. I'll surely miss those babies sometimes, but mostly I'm glad that they are growing up. Malachi is enthralled with numbers and letters and JJ goes around doing completely adorable things, like hugging and kissing inanimate objects and saying " 'ug an' kiss!" in his tiny voice.

Thanks to the Kickstarter campaign, we have also been able to afford more trips to the Anat Baniel Method Center in California. Malachi and I are on one now, in fact. It's nice to have only one boy to take care of, but he is by far the more difficult of the two. That, and the fact that both boys have been going to bed very late on these long summer days, leaves very little time for thoughtful compositions.

OK, all that stuff was written last week. See what I mean about not being able to find time?

Anyway, I wanted to share with you SEVERAL exciting developments in my life over the summer.

First:

Slowly and steadily, Dark & Light: A Love Story in Black and White is becoming a reality!



Above is the proof copy I got from China a few days ago. After a few modifications, the final version is sent and the order will soon be in production! I'm hopeful that our arrival date of mid-October will hold true!

If you've already followed some of the links in this post, you will also know that I have started a website for Dark & Light. Due to the generous and unsolicited donation of time and services from All Media Bainbridge, the website will — as soon as we have products! — have an online bookstore, where you can buy the books directly from yours truly! Meaning even more money for Malachi's treatments!

Which leads me to....

Second:

Malachi is progressing very well after our last two weeks of lessons at the Anat Baniel Method Center in San Rafael. I will write a much longer post about this trip later but I wanted to share these two videos from our trip. This first one is of Malachi prop sitting for a full minute, but before I had the camera on, he was prop sitting through a whole rendition of the ABCs, so that makes at least TWO full minutes of prop sitting!




But here's the real coup d'état! Malachi crawling around on his alphabet mat! If we are Facebook friends — and if not, why not? — you will have already seen a shorter video of him crawling, but I think this one better shows his newfound skills.


(Yes, this is where the video should be. Instead:
I have LITERALLY waited all day for Vimeo to convert this video and tried numerous tactics, including upgrading to their Plus package. All to no avail. I've decided not to wait any longer. I'll update this post if/when it ever comes through or I will include it in my future post about our trip to the ABM center. In any event, you can watch it on my public Facebook wall by following the "why not?" link above.)

UPDATE 9/6/12: Here it is:



Finally, third:

While I was gone to California with Malachi, somebody stole my baby and put this big kid in his place:



I mean seriously. Doesn't he look at least 12... or, you know, 40 in this picture?

Time marches on....

Speaking of time, are you aware that TOMORROW (Sept. 4) is World Cerebral Palsy Day? I am going to be a big fat slacker and not do anything about it (it was hard enough to get this post up!) but several of my blogging friends are posting about it so go check them out!

• "AZ Chapman" is a young woman with CP who has put together a photo montage of folks with cerebral palsy. She blogs at http://azisamazing.blogspot.com/ so head over there and see if you can catch Malachi's cameo!

• Tracey Trousdell is taking the World CP Challenge which is a four-week campaign to raise awareness and funds for cerebral palsy.

• And Ellen Stumbo has her monthly CP Connection which I'm sure will be chock-a-block full of many fascinating personal and emotional stories about this crazy ol' condition we call cerebral palsy.

Alright... I think that's everything!

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