Wednesday, December 28, 2011

Wordless Wednesday, but not by choice

Regular readers will know that I often have a segment on here called "Wordless Wednesday," which consists of images that mostly speak for themselves.

However, this Wednesday is "wordless" for me because for some reason, Facebook is not allowing me to update my status and hasn't for the past three days. I can comment on posts, I can add links, I can upload pictures. I can do everything but update my status and make original posts in chat groups (which with Facebook's new system is basically a status update that is only shared with those people).

At first this was mildly inconvenient. OK, so maybe people don't need to know what I think of our public radio's telethon right after Christmas (Really? Do they think that's going to be successful when everyone is tapped out and on vacation?) and probably they don't care that we tried to go to the Oregon Zoo's Zoolights festival but the massive crowds sent us to Peacock Lane's more modest light show instead. But there have been some pretty cool things lately that, goddamnit, people need to hear about.

Jaden is simply blowing me away with his helpfulness. This kid is 15 months adjusted age. He can say very few words and signs just a little. (His utterances often revolve around the word "cat" — "dat," "dis," "da," "ca" being among them — though "chzzz" — cheese — is beginning to make an appearance.) So you would think he is a pretty basic creature. Not so. Yesterday, he picked up a used tissue and walked it over to the garbage can ALL BY HIMSELF. Today, he took old Cheerios out of Malachi's highchair and tried to put them in the sink (he's too short to reach) ALL BY HIMSELF. Then, when he was getting into a box in my room, I handed him a toy and asked him to take it to Malachi, whom I'd left on his tummy in the living room. I did this just to send him on an errand out of the room, never expecting him to actually do it. I was stunned when I walked into the living room moments later and Malachi was on his back happily playing with the toy Jaden had given him on his way to the kitchen.

Which leads me to Malachi's latest milestone: getting into trouble. Until now, he hasn't really been able to do much quickly enough to get into trouble. But today I went to change Jaden's diaper and left him in his highchair near the dining table. On the table is a bin of odds and ends — nipples, bottle caps, oral syringes, etc. — that I have repeatedly told him not to touch and had pushed away from where (I thought) he could reach. When I heard the loud crash, I knew instantly what had happened. I grinned to myself at Malachi's accomplishment but vowed to be stern with him so as not to treat him differently than his brother. My resolve melted quickly though when I turned the corner and Malachi grinned triumphantly at me while chewing on one of his lapful of bottle caps. He seriously has the best smile and it is almost impossible not to smile along with him.

See?



And for my grand finale, I have to mention that both of my boys have started to say "Mama." In fact, I think it is approaching Malachi's first word status. I say "approaching" because I'm not convinced they know what it means yet. I know they know I like it and that it gets my attention. Malachi will say it in the car to try to flirt with me while I'm driving and they will both say it at mealtime to try to butter me up to give them more of whatever they want. That plus Malachi's megawatt smile is going to go a long way, and I think he knows it.

So there. That's what's happened to me in the last few days. Now I don't feel the need to open my front door and scream these things to the world.

I'm not even going to think about what would happen if Blogger gives me an error message when I press Publish.


Thursday, December 22, 2011

Confessions of a Christmas Elf

For some reason I keep thinking of this story I wrote for The Beaverton Valley Times a few years back (reprinted below). I think it's because so many of my friends now have kids and they're all posting photos of them on Santa's lap. I've never really understood that tradition. Personally, I'm going to wait until they are old enough to request something like that. And I won't be surprised if they never do.

But maybe I just got jaded after reporting this story on the seedy underbelly of Santa photos. I hope you find it as entertaining as I did!



Free photo from www.morguefile.com


Confessions of a Christmas Elf

The true story of working at the mall at the holidays

Ah, the mall on a busy weekend, right before Christmas.
Shoppers rush to and fro, holiday music is piped through store speakers, decorations glitter all around – and in the center of it all, the Jolly Old Elf himself presides over cheerful parents and children who go happily on their way after telling him their secret desires.
Not quite, says one of Santa’s helpers.
“Mike” (who spoke on condition of anonymity for himself and his employer) says that at one major mall in Washington County, working conditions and customers’ attitudes paint a far different picture.
“(The children) cry, they kick, some of them pout – while the parents just laugh and we’re all stressed because we’ve got a line that’s an hour and a half (long),” he said.
And the parents aren’t much better.
“I feel like here, it’s almost like a chore for them: ‘Well, I gotta get the Santa picture.’”

Parents want their children crying

Mike has also found that some parents revel in their children’s misery.
He tells the story of a mother of three children, who were terrified of Santa.
“They were just, I mean, hideously screaming,” he said. “And she was just in utter hysteria, laughing. And she said: ‘Take as many shots as you can, this is the greatest thing in the world.’”
Mike said she’s not the only one: “I’ve seen parents pick ‘em up by the pants and set ‘em on his lap and just say: ‘Take it as fast as you can; I want them crying.’
“I get that request at least 10 times a day,” he said.

‘Santa’s grumpy!’

As can happen with any job that involves kids, unsophisticated things are bound to happen.
Once, Mike said, “I took a picture of a kid vomiting.”
Another time, a squirmy toddler was placed on Santa’s lap “and he kicked as hard as he could, and I think he got Santa in some precarious spots,” Mike said. “Santa was pretty perturbed, so the people were really ticked when they left, saying: ‘Santa’s grumpy!’
For all the big man does for children, Mike said he tries to make Santa as comfortable as possible.
“The Santas,” he said, “you just don’t want them riled.”
Though, he also feels that the management can overreact to Santa’s perceived needs.
Once, Mike’s manager was so upset that Santa didn’t have any water that Mike ran to get him some.
“Like an idiot, I fell on the escalator and this guy was like: ‘Are you OK?’
“No, I am not,” he replied. “I am not OK. I’m Santa’s helper. That says it right there.”
The stress of his job even follows him into his dreams.
Mike’s wife said that one night in bed, he pushed her and said: “The back of the line is over there!”
Mike’s wife said she was sure that he had to be awake and was joking with her.
“So I turned on the light and he was like, ‘Where am I?’ He really was asleep,” she said, laughing.

Wednesday, December 21, 2011

Wordless Wednesday: Flu season

I shot this several months ago, but it fairly accurately sums up my life right now. If you want to get the full experience, just multiply the volume you see here by 100 and add the foulest odor you have ever smelled. Then have someone wake you up in the middle of the night by screaming and pouring this horrific warm liquid all over you.

Now multiply that by two.

I have never been more grateful of the fact that skin is washable than I have been since becoming a mother.



P.S. What is with babies and being completely fine after having thrown up?? Jaden will literally eat it if I give him the chance.

Sunday, December 18, 2011

"A Twist of Fate" now available in every format imaginable!

What's that you say? You don't like eBooks in any flavor? You won't read my book on Kindle nor iBooks nor even on your web browser?

Well have no fear. A good old-fashioned paper-and-ink version is finally here!


And no, I did not change the title to "A Twist of Fat," just a poor choice of finger placement. I would take another picture, but Jaden got ahold of the book and it doesn't look near so pretty now. But that's OK! Yet another thing that one can't do with electronic books.

(In fact, I think it was worth it to make my book paperback just so Jaden could toddle over with my own book in his hands saying "D! D! D!" — Read! Read! Read! Granted, he got pretty bored after he discovered there were no pictures....)

So where can you acquire this wondrous thing at an incredibly reasonable price?

Glad you asked. Check out my Createspace estore here.

What's that you say? You want to read someone else's blog that is singing the praises of my book? Well, go follow that link there to Laura Stanfill's blog. You remember her. She interviewed me about writing a few months back.

What's that you say? You want to physically walk into a bookstore and pick it off the shelf before gloating to the clerk that you knew the author when?

Hmm... well. I'm working on that.


Sunday, December 11, 2011

Malachi is STANDING BY HIMSELF!
(So why aren't I ecstatic?)

OK, let me start with this:




This is the first photo EVER of Malachi supporting HIMSELF while standing. This was after a stream of firsts the day before, including sitting completely by himself for a few seconds while I let the cat in and several cognitive steps, such as touching his ear when I asked where it was.

These amazing things all happened midweek. So why has it taken me so long to blog about it?

Well, I could say I was busy (true) and that I'm working on bringing my novella to paperback form (also true), but the truth is I was confused by what I felt about Malachi's first milestones in a very long time. I posted the photo on Facebook and was startled at the immediate and overwhelming reaction of my friends and family. Friday night, I showed the photo to a woman I've met only a handful of times and she started crying. Crying.

I was happy about it, but I wondered why I wasn't as overjoyed as they seemed to be. Aren't I the person who should be the happiest?

Thinking about this in my car yesterday, I began to cry tears of joy that quickly turned to the not joyful kind. The situation bore too strong a resemblance to the many, many times I drove to the NICU with tears streaming down my face to see my children — one with undefinable brain damage, the other with serious lung problems — plugged into wires in heartless plastic boxes.

It is curious how easy it is in the midst of tragedy to imagine that things will never be good again, yet in the midst of blessings it is equally easy to imagine how it could all be snatched away. It doesn't quite seem fair that joy can be so easily sullied by fear while pain is fairly immune to solace.

As I thought about these things, hoping other drivers didn't notice how upset I was, Adele crooned over the radio: "It isn't ooooooooover."

That's when I realized why I wasn't as happy as I probably should be. It's not over. We have so much further to go and the gains Malachi has made are not assured to be permanent and, and, and....

And as soon as I identified why it was that I couldn't permit myself to be fully happy, I knew how silly that was. Yes, it's not over. Yes, we have a long way to go. But yes, today my boy has made me so proud and yes, today I'll take my joy where I can get it — straight up. No rocks, please.






Wednesday, December 07, 2011

Wordless Wednesday:
I Only Have Apps for You



Here's a friend of mine, proudly displaying his Kindle library... with only one book in it! Mine! So exciting! He said he downloaded the (free!) app just to read it.

I've been pretty busy this week, so I haven't gotten a chance to tell the blogosphere that my book is now available on eight different platforms through Smashwords.com. It is also still available through Amazon's Kindle, and I would recommend you go there if you want the Kindle version because it automatically downloads to your device. But, Smashwords is pretty cool because even if you are soooo lame as to not have an eBook reader (ahem, yeah, I don't either) you can still download it as a PDF or even just read it in your web browser.

I've gotten rave reviews so far! Go see what you think!

Thursday, December 01, 2011

Cerebral palsy blog party!

A blogging buddy of mine recently added me to a Facebook group for people who have adopted children with cerebral palsy. I am simply in awe of people who would not only choose this special needs life but who actively fight, travel and pay money to adopt these children to whom they have no obligation.

They already seem awesome and I look forward to getting to know them better.

Anyway, a member of that group has a popular blog and is having a blog party of cerebral palsy blogs. I don't have a lot of time right now, and I might have passed it up except that an employee of my local chapter of United Cerebral Palsy called yesterday and asked if I could compile a list of some of my favorite CP blogs.

I've learned to pay attention to coincidences.

But I still don't have much time and Ellen only asked for "something about cerebral palsy," so I'm going to cheat and post a link to all of my (many) prior posts about cerebral palsy:

http://www.outrageousfortune.net/search/label/cerebral%20palsy

Ta-da. (If you're new, you can also check out the list over in the sidebar, ------------->
below my profile picture, of my best stuff.)

Actually, you know what, just so that I can direct that lady from UCP here, I'm also going to take the time to list the CP-related blogs I follow*:

www.lovethatmax.com <----- She's my inspiration to start my blog so she gets top-billing, all others are alphabetical. If there are any that I've missed, please include them in the comments section!
http://aboutthesmallstuff.blogspot.com/
http://www.theredneckmommy.com/
http://birdonthestreet.com/
http://www.bringingthesunshine.com/
http://www.survivingtriplets.com/
http://im-stillstanding.com/
http://thinkingofstartingablog.blogspot.com/
http://lifeofthedifferentlyabled.com/
http://lieck3.blogspot.com/
http://onealaskanmom.wordpress.com/
http://lovelifeandprematurity.blogspot.com/
http://micropreemietwins.blogspot.com/
http://motherofatoddlerandtriplets.blogspot.com/
http://my2lovesmylife.blogspot.com/
http://samuelpope.blogspot.com/
http://earlybirdies.wordpress.com/
http://colofisch.blogspot.com/
http://thehouseofdestephano.blogspot.com/
http://www.therextras.com/therextras/
http://walkingwithgreta.blogspot.com/

*Keep in mind I use the term "follow" loosely. I try to read as much as I can but, c'mon, people, I have 1-year-old twins.

OK, well that already took longer than I'd hoped, so there you go!


Stumbo Family Story

Wednesday, November 30, 2011

Wordless Wednesday: Practicing for twins

Twenty-six years ago, I knew practicing with just one Cabbage Patch doll wasn't going to cut it...






Wednesday, November 23, 2011

My new release, 'A Twist of Fate,' realizes a lifelong dream

When I got pregnant, I imagined that I would have one, normal baby, take a year off from the rat race and write a book or two. Who knows, maybe I'd even make a fraction of the money J.K. Rowling did when she decided to do the exact same thing.

Alas, my reproductive system had other plans.

Despite all the trials and tribulations that came with those unforeseen plans, I did manage to carve out some "me" time — thanks in no small part to my husband — to write what became a 28,000-word novella.

(The story of three identical women from different corners of the world who find fulfillment after suddenly being switched into each other's lives came to me long before I was pregnant. But the irony of these characters being "identical triplets" was not lost on me.)

After briefly shopping the book around to a few agents, I decided to self-publish because I simply don't have time to climb that hill right now. This is not to say that the e-book you can purchase for your very own is poorly edited or formatted — I did take as much care as I possibly could with that, including a professionally designed cover.

So there it is, out there in the wide world for all and sundry to read. At the very least, I can cross "publish a novel(la)" off my bucket list. At the most, it'll go viral and some producer will agree with me and this anonymous commenter that it would make a really excellent Hollywood-Bollywood crossover film.

A girl can dream.

(Hrithik Roshan, call me. I promise not to drool on you. Much.)

In any event, I have always wanted to be a published author. Thanks to the magic of the Internet, now I can say — with a wink and a nod — that I am.



Saturday, November 19, 2011

'A Twist of Fate' coming soon to
an e-reader near you!

Hi folks!

Remember back when I told you about the novella I just finished writing and the interview a local writing blogger did about me and when I gave you an excerpt from the book?

Sure you do.

Anyway, I've finally run the gauntlet of friend/family editors, fruitless agent queries and exclusive publishing house rejections and feel comfortable self-publishing. I knew this was where I would end up with a story under 30,000 words, but I had to try, right?

So, this week I'm planning to announce (just in time for holiday shopping!) a pristine electronic copy of "A Twist of Fate" for your very own. Until then, here's a copy of the cover, which I just finished, containing original artwork by a longtime friend and amazing artist, Christian Stairs.


Be sure to put it on your stocking stuffer list for your favorite readers!

Thursday, November 17, 2011

What I like about the Anat Baniel Method




The best thing about our recent therapy trip to California — aside, obviously, from the (albeit fleeting) gains that Malachi made — was an increased understanding of the Anat Baniel Method (ABM) and a conviction that it really works.

I was raised on homeopathy and naturopathy, so when I say that alternative methods tend to be pretty hokey, I say it with love in my heart. ABM, however, is NOT hokey. It's not about aligning energy or pleasing thetans or whatever. It is — once you get passed the steep learning curve — a logical and internally consistent method that operates on the technique that every healthy child uses to learn how to walk: playing and experimenting within the confines of his or her ability.

In one of Malachi's typical ABM sessions, he cries infrequently and often plays contentedly for most of the session. (Let me tell you that it is quite remarkable in itself for Malachi to play contentedly for 45 minutes.) Instead of dictating a particular position or game for him to play, the practitioner follows his movements and amplifies his intentions, often pressing on or — for lack of a better word — wiggling different parts of his body that could help him in his endeavors.

In the traditional view of therapy as "hard work," it might not seem to an outsider that he is learning anything. But the latest brain science tells us that we learn best when we are actively interested and learn worst when we are angry or upset. So it follows that fostering a calm alert state, rather than a frenzied straining effort, is best for learning new skills. For example, during a session, Malachi will periodically stop playing with his toy and have this look on his face like he is "listening" to his body and really feeling what the practitioner is doing. That's the best, because you know he's learning about some new part of his body, making the connection that other muscles can be involved in his action to make it easier and more fluid.

I have to admit that I don't know the history of physical therapy. But it seems to me after witnessing this method in action that traditional physical therapy took methods that were effective at treating muscle problems and graphed them onto people with brain problems. It works, but it has its limitations. Rather than the traditional view that Malachi's muscles are too weak or too tight, with ABM the idea is that his brain is unaware of how it is using those muscles at that particular time and by drawing his attention to it, he can fix it.

Since Malachi's disorder stems from his brain and not his muscles, this makes a lot of sense to me. It also makes sense to me because I can see it as the edge of a spectrum that I am also on. Just like anyone, sometimes I will be preoccupied and squeeze someone or something too tightly — that's my brain failing to send the right signal to my muscles. Or more globally, I slouch a lot even though it hurts my shoulders to do so. By bringing my attention to what my back muscles are doing, I can use them more efficiently and effectively. We are helping Malachi do the same thing, just on a bigger scale.

However, the biggest thing I still struggle with in ABM is this concept that you shouldn't put your child into a position that he or she can't get into his-or-herself. This is a hugely controversial aspect of ABM and one that deserves its own post. For now, suffice it to say that I'm still not very strict about it with Malachi but I do understand the logic behind this tenet better than I did before and I fret constantly over whether I'm doing the right thing by holding him up to "chase" after his brother. (OK, I don't really fret over it at that particular time very much because it's RIDICULOUSLY ADORABLE to watch them shriek and giggle when they "catch" each other. But other times I hold him up to play, I do worry a lot about it.)

Overall, despite the negatives, if you want a method that focuses on the brain, I think ABM is the best one I've found.

Friday, November 11, 2011

Welcome home

I don't consider myself to be a very weepy person (at least not before my son's brain injury, but we're not talking about that right now) nor a person who is particularly supportive of the military.

However, this commercial, which aired several years ago, never failed to tear me up. 




For some reason I was thinking about this commercial the last time I was at the airport, seeing off family. Maybe it was the large flags hanging in the check-in area, maybe it was the fact that I was there with my new little ones and was feeling protective. Whatever the reason, it should have prepared me for what happened when I left the airport. But it didn't.

As I pushed the button for my floor of the parking garage, a strapping young man in a full khaki uniform and a bulging duffel bag stepped on the elevator. We rode in silence for what seemed like forever. I thought: I should do it. I should say welcome home. Clapping would be weird. Don't clap. But welcome home might be weird too. What if Portland isn't his home? What if he wasn't in Iraq or Afghanistan? Am I presuming too much? I know! I'll just say thank you.

But when I thought of that, "Thank you," the full weight of what it meant hit me and the words caught in my throat. 

Thank you for risking your physical and psychological health for us. Thank you for leaving your friends and family for a hostile environment and a hostile culture. Thank you for doing your duty for your country while the rest of us actively ignore the fact that we are fighting two wars. Thank you for being willing to make the ultimate sacrifice knowing that we can never repay you or your survivors for it.

The door opened and the moment was gone. Even a simple thank you would have been better than nothing and I kicked myself all the way home for missing the opportunity.

So here I am, saying thank you Guy at the Airport. Thank you to all of our fighting men and women who have been deployed far and wide.

And, welcome home. 

Sunday, November 06, 2011

In the beginning...

Malachi (left) and Jaden at about two months adjusted age. 


In the beginning, Malachi did everything better than his brother. He breathed better. He digested food better. He nursed better. He did tummy time better.

In fact, he was supposed to come home from the hospital before Jaden. The best birthday present ever was when the doctors decided to release him (unknowingly) on my birthday.

(The best surprise birthday present ever was when we showed up at the NICU that morning and they'd decided to release Jaden, too. We were like: "Really? Both? At the same time? Are you sure? Can't we just have one for a day or two to get used to it? Really, you keep him. It'll be fine. We'll be back, we promise.")

I, of course, noticed when, at four months of age, Jaden finally surpassed his brother in abilities. Laying down to sleep, Jaden wiggled his thumb into his mouth to suck it. This is something Malachi still cannot do and it continues to bother him immensely. (I know this because my mommy ESP tells me. Oh yeah, and also because he screams bloody murder until we can coax a pacifier into his mouth and convince him not to push it away with heart-breakingly unsuccessful attempts to put his thumb in his mouth, all while a suddenly deaf thumb-sucking Jaden peacefully nods off. I'm very perceptive that way.)

Today was another jump in Jaden's abilities that drove me to tears. Jaden has taken several independent steps in the last week and I thought, despite earlier worries, that I successfully passed this milestone without being sad about it. First steps, over and done with, and all the emotion I had was surprised, joyful laughter. First time a stranger asked me if "the other one" was walking yet and I was able to simply say "no" with a smile.

But today was different. Today, right before nap time, Jaden decided he was done taking a few toddling steps towards something safe. Today, he was going the distance.

He walked back and forth, with the determined, proud look of a tightrope walker on his adorable little face. Every once in a while he would stumble and then get up — standing straight up, which was also a first — and paced back and forth at least a dozen times before he finally collapsed in exhaustion.

Jaden was so happy and I was so proud of him; you could tell he really got it that he was doing something exciting. He just kept going and going while I sat there cheering, trying hard to keep my attention on him and not the other little boy in my arms who might not ever be able to do that.

I try to tell myself that Malachi's experience is just as valid. Just about everybody goes through the same developmental steps at the same time; us "normals" don't even really have a choice in the matter. Same. Same. Same. But Malachi is different. He gets to experience a whole different way of being human. He isn't locked into crawling before he can walk. He isn't locked into talking before he can really listen. He gets to choose a different adventure; combine parts of life in ways that we could never do and that we couldn't even imagine. He has a different path and different isn't bad. In some ways, it's better.

But I still hate it. I hate that his gains never seem to be permanent or indicative of future capabilities. I hate that he used to eat wonderfully and now it's a major problem. I hate that he used to be able to prop comfortably in tummy time (see picture) but now he can't.

I hate that no matter how often I hear from experts that cerebral palsy isn't a degenerative condition it sure doesn't feel that way. Not to me. Not when I have a twin who is racing ahead while his brother still seems stuck on the first of The Important Milestones.

I hate that while today Malachi can see and grab for a single strand of hair, his eye doctor says his cornea is too transparent. Which, as all the doctors have seemed to say since the brain scan, either means something really bad or it's normal. No way to know until we know.

There's never any good news, just absence of bad news. Which is something. At least there's the absence. Thank God for the absence of bad news.

Until there is some.

Wednesday, November 02, 2011

Wordless Wednesday: 10 years ago...

Our first picture together as a couple....







Same place almost exactly 10 years later....





.....and two kids later.



Tuesday, November 01, 2011

Happy Halloween!

Ok, so I should have written this post yesterday or the day before but things have been pretty busy since our return from California. Not to mention, we've had some pretty remarkable milestones... of course from the twin we didn't spend thousands towards his development on.

Jaden's first word came when we finally got home from our trip at midnight. The cat was parading around chastising us for being gone so long and Jaden pointed at her and said "ca!" three times. Not only had we not seen the cat for more than a week but I have never consciously taught Jaden the word "cat." But the next morning I asked him if that was the cat and he replied "ca!" So, it's official. (Yesterday, we went to a house with dogs and he said "ca!" and I said, "No, that's a dog," so he calls them "da!")

Also, two days ago Jaden toddled his first few steps all on his own and yesterday while holding a remote he toddled a few more before my exclamation of joy caused him to topple over. It's very exciting, but of course it takes effort not to think all the un-accomplishments going on nearby.

Anyway, all of that is to explain why I didn't post this awesome picture at a more appropriately festive time:



It's hard to tell from this photo, but I was a tree for my two monkeys to climb on. (Anyone who knows the series Portlandia will appreciate that I "put a bird on it.")

I thought it would be funny if Malachi were Monkey See and Jaden were Monkey Do, but the few people I told that joke to laughed nervously, so maybe it's offensive. But hey, last year Malachi got to be Superman while Jaden was Clark Kent, so I think it's fair.





In case you're wondering, I was A Tall Building.

What were you guys for Halloween?







Thursday, October 27, 2011

Did it work?

If you read last week's post, you're probably wondering if our 1700-mile roundtrip to the Anat Baniel Method Center in San Rafael was worth it.

Well, I think the answer is yes. Yes with a but.

See, Malachi did improve quite noticeably. No, he didn't achieve any of The Important Milestones, but his body was much looser and better organized. He was happier and wiggled a lot more. He arched his back in controlled ways, such as to reach the edge of his highchair tray, instead of reflexively. He ate and drank better. He manipulated objects with his hands much more fluidly, and he was more tolerant of putting weight on his hands and elbows. And the crowning achievement was his ability to bring his legs up and over to roll onto his side, instead of arching his whole backside in a crescent moon shape.


This isn't the greatest example, but it shows
Malachi trying to lift his legs while rolling onto his side.


Notice I said was. Already in the time we've been back, I haven't seen Malachi pull his legs over nearly as often or as easily. I can feel the gains he made slipping away and for all my talk about how expensive it was to go down there, I want to sell my house and go right back. I feel like a drug addict and Malachi's progress is my crack.

Which leads me to my biggest criticism of the Anat Baniel Method: it's ridiculously expensive. Don't get me wrong, Anat Baniel has come up with an amazing thing and she deserves to get rich because of it. Likewise, she and her practitioners are providing a benefit that outweighs any of the doctors that we've seen and — combined with our insurance — paid thousands to. But this is not covered by insurance; not even a little bit. Not to mention, the training for this method is far, far less time and money than the four years of medical school and years of residency those doctors are required to take. The appointments look like a combination of massage, acupressure and guided yoga, yet at even half their $200-plus fee* they would be more expensive than any of those proven (i.e. researched) therapies.

So what gives? I did ask one person there why the sessions were so expensive and he not only didn't have an answer for me but didn't realize how much they were. He told me to ask the accounts receivable person why they are so expensive. If I were still a reporter and this were some kind of newspaper story, I definitely would, but I'm fairly certain that she doesn't have any idea either. That is simply the intersection between how much they feel their expertise is worth and how much they feel desperate parents are willing to pay.

When I started out looking for alternative therapies for my son's condition I had no idea what to base my judgement on since none of those methods had any definitive science behind them. I decided to go with my gut instinct about which practitioners seemed to really care about Malachi and which were going through the motions. Perhaps not coincidentally, this also happened to be those practitioners who were willing to give our struggling family a discount on their fee. That is how we found ABM and I'm eternally grateful to our practitioner for being so generous that we stuck with it and for continuing to be so generous that we can afford to continue.

But we won't be able to afford another trip down to California for quite some time — if ever — and that's where we saw the big gains. Even if we went with a more experienced ABM practitioner here in town, it would cost $600 per month to do the same schedule we are doing with our own practitioner. That's just not going to happen.

So, sorry, Malachi. I guess you should have chosen richer parents.


*We paid per-session fees of $200 and $250 to our two skilled practitioners in San Rafael. Anat Baniel herself is considerably more expensive. Run-of-the-mill practitioners, such as one you may have in your town, are considerably less. Each session is 30-45 minutes.

Wednesday, October 19, 2011

On our way

White-capped Mt. Shasta in the far distance.


It seems like many of the parents I've met in the special needs world go on at least one crazy, expensive trip to a far-away clinic that promises results. 

We are on such a journey right now. 

As I write this we are crossing the border into California on our way to the Anat Baniel Method Center in San Rafael, in the Bay Area. Because we have not one but two babies, this 10-hour drive is taking two days each direction, driving at night so the twins will (mostly) sleep instead of (mostly) crying. 

(Added later after we arrived at our hotel room: This tactic was not entirely successful. An hour into the second leg of our journey, Malachi threw up Pediasure everywhere necessitating a hasty and totally gross pitstop. Four hours later, we arrived at my sister-in-law's house in Northern California where the boys woke up thoroughly and completely. I fed and played with them until 3:30 a.m. before I could convince them it was now "nap" time.)

Once we get there, we have rented a hotel room a few blocks away from the ABM center, where we have pre-paid for four days of twice daily lessons of 45 minutes each. Each of those lessons costs around $200, which insurance doesn't cover at all because this unproven method doesn't even have the credentials to be called a therapy.

All told, the trip will cost our single-income family more than $3,000 at a time when we are scraping the bottom of our savings and our minivan just died.

Needless to say, we are hoping for some real results for that kind of scratch. 

All of our other therapies — including aquatherapy at more than $400 an hour — are mostly paid by insurance or the state. It definitely makes you reevaluate what sort of results are "good enough" when you personally are throwing down the cost of a car for a treatment program.

So what will be "good enough"? What will it take for us to consider this trip a success?

I don't know yet. I guess I'm hoping for one of The Important Milestones, like rolling from back to front. The irony, though, is that this particular method says we have to keep our goals "flexible." (The cynic in me, of course, says this is code for "unattainable.")

But then, here's the clincher: what if it does work? Will all of our future "vacations" be to San Rafael? 

One family I met a few months ago had gone all over the world and done almost every alternative and conventional therapy to teach their teenage son to walk, with mixed but ultimately temporary results. While I listened to the mom, I couldn't help but wonder how much money they had spent on all those treatments and how much pressure her son felt for never getting well enough, never being good enough.

On the one hand, you feel as a parent of a special needs kid that nothing else can be more important than providing them the most opportunity to improve as possible. That's why my husband and I did make the decision to spend our paltry life savings on these treatments — because what is a trip to Hawaii when your son's very future is on the line? What sacrifice of leisure and comfort would not be worth erasing the damage from that damned brain bleed?

But on the other hand, you know that there is a line. Malachi has many facets that do not include his disability, so turning "curing" him into the focus of our lives will ultimately cheapen his existence, not enrich it. 

So where do we find that line, and how do we know when we've crossed it? I don't know. I'll let you know if I find it as I drive past mile after mile of golden California hills. 



Thursday, October 13, 2011

One twin's parents are nothing like the other's

Jaden's parents would never dream of giving him Pediasure or other corporate, processed food products designed to mimic actual nutrition.

Malachi's parents worry when he doesn't eat enough of it.

Jaden's parents drop him off at babysitters' houses with little to no explanation beyond when he last ate and slept.

Malachi's parents leave detailed instructions on everything from how to play with him to how to change his shirts to how to make his bottles.

Jaden's parents would have kept him in cloth diapers until he was potty-trained.

Malachi's parents worried the bulky diapers were interfering with his mobility.

Jaden's parents let him cry and get dirty and scrape his knees.

Malachi's parents squabble over how much crying is too much and they never feel able to put him outside without a blanket between him and the elements.

Jaden's parents let him figure things out for himself as much as possible.

Malachi's parents push him every day to learn more, better, faster.

Jaden's parents expect him to eat whatever they give him, even if it's not his favorite food.

Malachi's parents often resort to tried-and-true standbys.

Jaden's parents greet each of his new milestones with mild pride and sometimes a twinge of annoyance.

Malachi's parents are absurdly proud at the smallest achievement.

Jaden's parents are reasonably confident in their ability to raise him.

Malachi's parents have read countless books, talked to even more experts and yet still don't feel at all prepared for whatever his childhood has in store for them.

Malachi's parents are nothing like Jaden's parents.

I never wanted to be like Malachi's parents.




Wednesday, October 12, 2011

Wordless Wednesday: Spotlight on Jaden







Strangely, this is the same look I had on my face when
I discovered the kitchen disaster in the previous picture.





Wednesday, October 05, 2011

How Occupy Wall Street will fail


Well, now I've gone and done it. I sent this late last night to an editor friend of mine, who promptly put it up on the Portland Tribune's website, which was not really what I intended at the time.

Oh well.

I guess I'll post the full html version here so people can see my links. Sorry to those of you looking for special needs fare. This is political, but an issue I feel affects us all.

If you happen to live in Portland, please join the OccupyPortland.org forum so we have a chance of creating a safe, legal place to protest.


****

Tuesday morning I woke up with hope in my heart and excitement running in my veins.

Well, no, that's not true. That morning I woke up to screaming babies, a mountain of debt, a house worth 30 percent less than I paid for it, a broken-down car and an exhausted spouse.

But after that, I did the hope and excitement thing. That's because I had heard about Occupy Portland and had spent an hour of precious sleep time making (extraordinarily clever) signs for the event.

In case you aren't aware, Occupy Portland, beginning Oct. 6, is one of many protests in solidarity with Occupy Wall Street, a protest that's been going on in New York every day since Sept. 17. There are similar protests sprouting up across the nation and there is no leader and no real agenda. This is simply a wellspring of public anger from people of all political persuasions saying enough.


Enough with corporate bailouts. Enough with ineffectual politicians. Enough with the rich getting richer and the poor getting poorer.

Enough.

And I thought this effort had a real chance of succeeding, too, because it seemed to have all the right elements: It wasn't for or against any particular politician or political party. It offered a framework for success but allowed people to fashion it in their own image. There was no single leader or sponsoring organization that could turn into a flashpoint for division.

But the kicker — the real message in this message-less, agenda-less, angst-filled public wailing — was this: WeAreThe99Percent.tumblr.com. There, people displayed messages of their sorrow on hand-written papers in front or beside their face. There was the immigrant who came to the land of liberty and worked two jobs to put herself through college but is now facing zero job prospects with an ailing mother to support. There was the 60-something architect who worked hard to pick himself back up and rebuild his business after the 1988 banking crisis and is once again left with nothing. They are all part of what is being called The 99 Percenters, those who do not have the unimaginable wealth of the richest one percent. By showing how much we all have in common, they created a space for solidarity in a deeply divided nation.

But by the end of the day, after I pored through the Facebook page and the event page and the forum and even dragged my butt down to a General Assembly meeting, I realized the fatal flaw in the movement. It's the same fatal flaw in every movement, from the anti-Vietnam War protests to the 1999 WTO protests.

Those goddamned radicals.

Don't get me wrong, everyone is radical about something. The Tea Partiers are so radically anti-tax that they don't notice the irony in protesting on tax-payer-funded sidewalks. Wall Street execs are so radically pro-capitalism they don't realize that the casino they're running isn't a free market.

Me, personally, I'm radical about the need for these Occupations to be peaceful. For better or worse, that means working with the police, something Occupy Portland has yet to do.

I grew up distrusting police, but I've since had many positive encounters with them. I believe they too are part of the 99 percent. I believe they have stressful, dangerous jobs and have to make snap decisions about who and what is a threat. I believe they have to work overtime, taking time away from their families, on a moment's notice, because of annoyingly unorganized protests exactly like this one.

But most importantly, I believe that protestors are guaranteed conflict — likely violent conflict — with police if they refuse to cooperate.

That's why — despite all my initial enthusiasm — I likely won't be participating in Thursday's protest. If I can't be sure of a safe, legal, family-friendly place to gather, then I won't go.

Anthropologist Margaret Mead famously said: "Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed it is the only thing that ever has."

I wish she had said what to do about how those people can distance themselves from an even smaller radicalized group who derail efforts to create change the whole world can take part in.


Saturday, October 01, 2011

Malachi's Menu

I wrote this letter for our daycare and thought it might interest you folks, too. I haven't talked much about Malachi's swallowing disorder on this blog, but I would say it is a major part of our daily life. Jaden can eat pretty much anything, whereas Malachi has a narrow diet consisting of thick purees and — much to my chagrin — super-sugary Pediasure, because he is unable to chew and swallow properly.

For readers who aren't parents, I should explain that "solid food" for babies means anything that isn't milk. For readers who are parents, towards the end of the letter are food ideas that we use that might be helpful for you or anyone with a typically developing 6- to 12-month-old.

If anyone out there is also dealing with dysphagia, I would love to have your comments, advice, etc.






Malachi has a swallowing disorder called dysphagia, which doctors tell us is unlikely to ever go away. For him, this manifests as a delayed swallow reflex, which means that he is at risk of inhaling his food, which in turn could lead to aspiration pneumonia and even death.

Fun stuff.

Malachi also has trouble closing his mouth completely, chewing his food appropriately and moving the bolus (food blob) around in his mouth with his tongue. 

Combined, these problems force us to feed him only pureed food or dissolvable food (i.e. things that become puree when in contact with saliva, like Cheerios and Gerber Puffs). 

You are welcome to try foods that seem to conform to this list, but only try small amounts and stop immediately if he coughs and gags. Do NOT try hard foods, such as real fruit pieces (no matter how small) or bread or other things that would choke a 6-month-old. 

The overall goal of food we offer him is that it be thick enough to slow down the swallowing process. Thin, watery foods can shoot quickly down the throat, too quickly for his muscles to react. 

The secondary, but also very important, goal is to provide him with as many opportunities as possible to direct his own eating. Intentional action plus success equals brain connections, so the more he participates and is rewarded for his participation, the better. This means offering him self-feeding foods at every meal and waiting for him to open his mouth or otherwise indicate interest in food before putting the spoon in. This also means stopping when he repeatedly refuses to eat, no matter how much or how little he has eaten.

This is all much harder than it sounds, as I am intimately aware.

Positioning:
Malachi needs to be supported while he eats so that he can concentrate on his mouth. We feed him in a chair that fully supports his back and head and is reclined at about 60 degrees. We also put a rolled-up dish towel on his left side as he tends to lean that way and can get stuck if he goes too far.
In recent weeks, we have also fed him a bottle this way. However, if he is particularly fussy or tired we go back to the old way. The old way is reclined on a pillow at 45 degrees with his head and, ideally, his entire body turned to the side with his legs tucked up and his chin tucked down. This prevents liquid from seeping down his throat by using gravity and the natural throat closure that happens when your chin is down.

Bottles:
Malachi takes Pediasure after solid food meals. It needs to be thickened with two scoops (1 scoop per 4 oz) of Thick It. You will likely have to pour about an ounce out to accommodate the powder. I've been told it is ideal to whisk or stir it, but I haven't attempted that inside the bottle. If you do shake it (as I do) shake it as lightly and as briefly as possible, otherwise the Thick It will form hard, clear chunks that clog the nipple. Even if you have done it perfectly, you often need to check the nipple for clogs. Watch as Malachi is eating and if you stop seeing bubbles or don't think he is swallowing or if he makes frustrated sounds, pinch the nipple below the hole and squeeze upward until you see bubbles or liquid come out. Careful, the clog can come out with some speed. 

Sippy cups:
Malachi should really only get water in a sippy cup, away from food. As long as it is clear water, it is unlikely that aspirating it will do damage to his lungs. He will likely cough after sips so be careful not to overwhelm him.

Things he can feed himself:
Veggie Sticks
Skinny Fries
Graham crackers (Honey Maid dissolve best. Off-brands not as well)
Cheerios (the multigrain are best because they are "lightly sweetened" making them stickier)
Puffs designed for babies (Corn puffs tend to be a perfect size and shape for his hand) I tend to use these sparingly as I don't think they're very healthy
Baby Mum-Mum crackers
Very thick purees (the consistency of refried beans, mashed potatoes, or sweet potatoes — this gets very messy, but he can get a little in his mouth)
tiny pieces (the size of HIS fingernail) of freeze-dried (not dried or dehydrated) fruit — these sort of melt away 
Real fruit in a mesh feeder (we haven't had great success with this, however)

His favorite spoon foods:
*Yogurt (I use plain Nancy's organic full-fat)
*Gerber Mango puree  *These are his favorites
Fruit purées (pear, applesauce, banana, etc.) WITH baby cereal mixed in to the consistency of creamy peanut butter
Gerber Peas, sweet potatoes, squash, also with cereal to desired consistency
cereals mixed with sauces, such as wheat cereal with tomato sauce
real food that has been through a baby food mill
Most other Stage 2 purees, with cereal to desired consistency (so far he absolutely hates Green Beans and Peaches)

Thursday, September 29, 2011

It happens every night



It happens every night.

We finally get the boys off to bed. I'm exhausted. I look around my trashed house. Some days I get up the energy to do something about it for a few minutes. Most days I don't.

I'm so tired. I just want to go to bed. Right now.

But it's 8 p.m. an evil voice in my mind says. You can't go to bed yet. You haven't had any "me" time. 


So I open my computer and spend a few seconds checking Facebook, Twitter, e-mail, etc.

Damn. Now it's 9 p.m. I should really get to bed.

I go through the house to get myself a glass of water and the Two-Second Project monsters attack me. I take out the trash, clean that spot that's been bothering me all day, feed the cat, switch the laundry and... ACK! How did it get to be 9:30?? You were exhausted two hours ago. GO TO BED.

So I do.

But there's that book on the nightstand, the evil voice says. Shouldn't you have just a little me time? All that other stuff was chores. 


Yes. OK. So I fall into another universe. When I emerge it's 10:40. Crap. I should really go to bed.

Lights out.






Am I still here? Yup. Still exhausted? Yup. But just laying here. Awake. For no reason.

Shhh! Was that a baby crying? Nooo! Go back to sleep!

OK, he did. But now what? Will he just wake up again in 15 minutes? Oh my God, even if he doesn't it's only 6 hours until they normally wake up. Crap! Go to sleep!






Still here. Awake.

Wednesday, September 28, 2011

My first paid post!


Hi everybody!

I'm so excited to announce my first paid post opportunity!
Syndicated on BlogHer.com
BlogHer, the leading authority on the female blogosphere, is syndicating my Land of Not OK post that was so popular with so many of you. In fact, it's quickly becoming my most popular post ever with almost 1,000 unique pageviews and counting.

So head on over to their site to check it out. (Here's the direct link: http://www.blogher.com/dispatches-land-not-ok) Oh, and feel free to publicly congratulate me on my fabulous writing talent so that others are encouraged to visit us here at Outrageous Fortune. :)

And if you are a new visitor from BlogHer, welcome! You will find my most popular posts in chronological order in the top righthand corner of this page, but of course feel free to poke around as you see fit.

If you happen to live in our neighborhood of the Land of Not OK — i.e. are a parent of a multiple (or two or three) with cerebral palsy or similar disorder — feel free to introduce yourself or ask a question on our forum: FOR(m)UM

Thanks everyone for respectful and ongoing debate!

Wordless Wednesday: Malachi's first word

OK, obviously he doesn't know what he's saying. Right? Right?

Tuesday, September 27, 2011

Living Life with a Double Dose of Special (from Bringing the Sunshine)

Today is the continuation of a post swap with Bringing the Sunshine that started last Thursday with my post 97 percent about the false statistics that shaped my pregnancy.

If you recall, or, you know, if you don't religiously check my website for updates (shame on you!), Andi is the mother of  an 8-year-old girl with cerebral palsy and an 18-month-old with Down syndrome. Today she is writing about the major differences between two disability groups that many lump together as a single "special needs" community. This post gave me goosebumps and I hope it affects you too.




cerebral palsy, Down syndrome, disability, children


Ten years ago, I was in an executive mentoring program with a large company, living in the suburbs of an up-and-coming city. My husband and I had already suffered a first-trimester miscarriage and a midterm stillbirth, but we had hope that we would, before too much longer, be blessed with the family we wanted. In 2002, our daughter was born prematurely with cerebral palsy. In 2010, our son was born with Down syndrome.

You could say that our family turned out a little differently than we expected.

When Sarah Kate was born, the initial focus was to keep her alive and healthy. Things were touch-and-go in the beginning, as they are with most preemies, but she sailed through the NICU. Eventually, we would learn that she had spastic diplegia, a form of cerebral palsy that causes tightness in the lower extremities.

The early years were tough. Other children developed at a much more rapid pace, and I found that some people would always look through my daughter, rather than at her. Instead of learning to knit or sew, I studied therapy and treatment options. It took a while, but eventually I grew accustomed to living in Bizarro World — that parallel universe that exists for those of us who have children with disabilities.

Although Sarah Kate still isn't completely typical, the gaps in development between her and her peers eventually began to narrow — a little. She is an intelligent, happy, and outgoing child who makes friends easily. Our focus was always to push her to reach the highest level of "normal" as possible, and we've been successful. She can't do everything that her peers can do, but she fits right in and often inspires others because of her positive outlook and unwavering tenacity.

We didn't know that Nathan would be born with Down syndrome. We opted out of prenatal testing, because if Sarah Kate's birth had taught us nothing else, it had taught us that you just can't prepare for everything. Nathan's name means "gift" and it was chosen before his birth because we believed him to be exactly that — a "surprise" given to us when we had long since settled into being a family of three.

Unlike many parents of babies with Down syndrome, I didn't go through a period of intense mourning; Sarah Kate's "specialness" had prepped me for Nathan. I already knew how to navigate the world of early intervention, IFSPs, and IEPs. I'd long since eulogized my dreams of perfectly typical children and being a garden-variety suburban soccer mom. I was well-versed in therapies, medical billing, spreadsheets, and the like. I knew that Nathan's circumstances wouldn't be the same as Sarah Kate's — his challenges would be different, and his long-term outlook for independence was less favorable — but I never doubted I could handle it. Same song, different verse, right?

Not exactly.

It didn't take long for me to learn that having a child with Down syndrome isn't like having a child with cerebral palsy. The first week I was home with him, I did some reading and discovered that of the parents who elect to undergo prenatal testing, 90% who receive a diagnosis of Down syndrome elect to abort. Several months later, I read that a non-invasive blood test to detect Down syndrome during the first trimester has been developed and will be available next year. I began to see the bigger picture — my son is one of a shrinking population, and it isn't because they're being cured. It's because they're being eliminated.

What I wasn't prepared for when I gave birth to a child with Down syndrome was being drafted into a fight for the lives of other children like my son. I wasn't prepared for the sudden and swift understanding of how cruel and intolerant the world can be, and how often that cruelty is cloaked in a mask of compassion and concern. I wasn't prepared to be judged for electing to love and care for a wonderful little boy who has been deemed by others as a "burden to society." I wasn't prepared to be labeled "overly sensitive" and "the PC police" because I objected to the widespread use of the r-word.

With Sarah Kate, I noticed the people who looked through her. They bothered me — a little — but for the most part I just placed them into the box of People I Won't Waste My Time On. But with Nathan, I care a lot more. I care because I know that if someone assumes Nathan is not only different, but also less, then they'll be less likely to stick up for him when bullies — or worse — unleash their heartless cruelty on him (Google "mentally disabled woman murdered" for a litany of true horror).

In most ways, our family is just like everyone else's. We laugh, we love, we fight, and we dream. We also don't waste a lot of time worrying about the small stuff that doesn't matter, but we do appreciate the small joys in life. Society would label our children as victims, suffering due to their disabilities, but we know better. True suffering for them — and for us, their parents — won't come from within their imperfect bodies. Suffering is created by a society that doesn't value them.

For that reason, we are open about our family — its challenges and joys — but we are also ever vigilant. We must be.

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