Thursday, June 30, 2011

Top 10 reasons why my son's cerebral palsy is awesome













Hi everybody!

I'm pleased to announce my first guest post ever, which you can find at Love That Max, my very favoritest special needs blog. The post is called "Top 10 reasons my son's cerebral palsy is awesome." It is a silver lining post from all the dark clouds that sometimes hang around here at Outrageous Fortune and I hope you head over to LTM to read it and poke around her site.

And, if you have clicked your way over here from LTM, welcome! Feel free to browse around and if you like what you see, be sure to follow, subscribe, "like," "friend," link up, bookmark, or whatever else you kids are doing these days.

Finally, a big THANK YOU to Ellen, author of LTM, for putting me on her blog!

Tuesday, June 28, 2011

Thank you donors!!

I just wanted to post a big shout out to everyone who helped us reach our goal — plus a little extra! — with a couple days to spare in the month!

During the course of this fundraiser, Matt and I also reevaluated our own finances and decided to really push Feldenkrais this summer, with two intensive series per month. Our wonderful practitioner is taking a large discount and I don't know if she wants it to be public knowledge, so suffice it to say this fundraiser will get us through a few months and after that we will go back to dipping into our own reserves. As a friend said, it's hard to know how hard it needs to rain before using one's rainy day fund, but I really do believe in this therapy and I know that now is the time to do it. (After the age of 2, the brain will harden and connections won't be as easy to make.)

YOUR generous contributions helped us reach that decision and have already made a HUGE impact in the life of a wonderful, charismatic little boy.



Also, please know that we intend to "pay it forward" when we get back on firmer financial footing!


Thank you donors!!!

Sunday, June 26, 2011

One year ends, another begins

A year ago today I was staring at a white board in the labor and delivery room, staring at the date a nurse had written in black marker.

Was that going to be the day?, I wondered. Was that going to be what I would write a million times? Was that how I was going to respond time after time throughout the years whenever anyone asked me their birthday?

The date looked so innocuous on the board like that. It was hard to believe the weight of weeks of worrying and striving to just make it a little longer would finally be felled by that day. That day, the day that I had waited for anxiously, was finally here. I was frightened, but also relieved.

I loathe myself for that relief. I didn't know then what I know now. I didn't know that Malachi would suffer his whole life because his birthday came too early. At that time, the prematurity was just an abstraction. Some time in the NICU, the docs said, but they would be OK. We were two weeks passed the really dangerous time for premature babies.

But even though I didn't know for sure like I do now, I remember the near-constant anxiety, the vague fear that hung in a cloud around me. Even now, as I write this, I can feel the creeping anxiety returning. My bones hurt. My stomach is sour. My heart is pounding. Tears come unbidden to my eyes.

I still haven't fully processed what happened to me and my children last spring and summer. I thought I would be able to do it now, a year later, but it's still too hard. How do I find the time to sit down and probe the darkest pain I have ever known? Where is that spot on the to do list and how much time should I schedule for it in between playdates and chores?

It's so much easier to ignore the pain and instead to turn to celebrations. A year. We made it, little tomatoes. There were so many times when I wondered.

We know so much more now about Malachi. Many of our deepest fears have been laid to rest — no grande mal seizures, probably no wheelchair, probably average intelligence (this is what we believe; doctors have promised us none of this). But there is so much we don't know. What will he act like? What will he be able to do? What won't he be able to do? So much is still unanswered.

And as we close this first year of their lives, we also come closer to the end of our private affair. Nobody expects a baby to do anything or be any certain way. Jerky, uncoordinated movements, drooling, the inability to stand or walk — all of these things are expected and even cute when it comes in baby form. Soon, it will no longer be expected, no longer be cute. The waitress who makes fun of him for being rather vacant and the store clerk who says his drooping head makes him look "sleepy" soon won't dare to say the same things.

I dread the day when I look into the eyes of a stranger commenting on my twins and catch the glint of recognition that something isn't quite right with one of them. I'm terrified of the moment I see a smile from another mom falter when she realizes her joke about my son's behavior is in bad taste because, no, actually, he can't sit up on his own.

But it's coming. Oh yes, it's coming. By this time next year, it will be obvious to anyone that Malachi has problems. By this time next year, we will finally have a real look at what his cerebral palsy will be, how it will affect his daily life.

Time marches on. Even through the endless days of bed rest and the horrific pain of labor and the even more endless days in the NICU, time marches on.

So we rejoice in the passage of time and we ignore the bumps and bruises it gave us as it went passed. We celebrate, because it beats the alternative.

Happy birthday, my precious miracles.

You don't know how much I wish it could have been a different day.


Malachi, hours after birth.

Jaden, hours after birth

Wednesday, June 22, 2011

Wordless Wednesday: Nnnnyah!

I think Wordless Wednesday is supposed to be about pictures, but I can't resist putting up this hilarious video of the twins last February. They both think emphatically said single syllables are hilarious — of course this means I anticipate a long and lustrous swearing career!



Giggley Twins from Shasta Kearns Moore on Vimeo.

*******
Thanks for stopping by! Won't you take a minute to donate to the cause of teaching Malachi to walk? Feldenkrais is not covered by insurance although we believe it is helping tremendously. Even the smallest donation will help us reach our goal of $1,000 before the end of June. See the donation button  at the top of this page in the right hand column. Thank you!

Saturday, June 18, 2011

I ♥ my husband

As you read this, you probably are wondering where my kids are right now and why I'm writing instead of taking care of them. Are they squalling on the floor being ignored? Have I thrown them out in the garage to get some quiet time? Do I even know where they are?

Well, the truth is, no, I don't actually know where they are right now. But I do know they are safe and loved and cared for and that is because I know who they are with: my husband.

My husband works all week and many weekends and when he has a day off, he usually spends it driving around town with the boys so that I can have a break to work on this blog and other writing projects. When he's not doing that, he's doing the dishes or any number of other projects I have set out for him. Sounds pretty cool, right? Ladies, don't you wish you had a guy like that? Well, too bad, 'cause his awesomeness is all mine. See?




The trouble is, I am absolutely horrible at making him feel awesome. Oh sure, he knows I love him, but I'm just not nearly as good at praising him as I should be.

Of course, this is all society's fault, not mine. Obviously. Television and movie wives are constantly whining about their stupid, lazy husbands and my friends and I have followed suit, probably spending more time bitching about our male partners than it would have taken to do whatever task it was they didn't do ourselves. (But to be fair, I wouldn't be at all surprised if they've spent a similar amount of time complaining about our nagging.)

This knee-jerk spousal battle of the sexes is why I laughed when I saw this bumper sticker on a man's car:

I ♥ MY WIFE

I figured his wife put it on there as a joke or something. How silly, I thought, to drive around professing your love for your wife, instead of New York or Scottish Terriers or other things people typically ♥. 

Then, of course, I realized it's not silly at all. If you're going to ♥ anything, it really ought to be your spouse, shouldn't it? I mean, if anything is worth putting on a bumper sticker, isn't your life's true love one of them?

It made me think of a friend I have who would tell me stories with a light in her eyes about wonderful things her husband had done — engraving her an award trophy just because or writing cute notes and leaving them where she'd find them. It took me several stories before I realized I kept waiting for a punchline that wasn't coming. I was so used to stories that followed the "my husband/boyfriend did the cutest thing... but then he totally screwed it up" formula. I wasn't quite sure how to respond to this "my husband is so cool, the end" formula.

I tried a few times to tell such stories, but, as any author knows, conflict is where the story is at, and I quickly forgot to simply celebrate the good times. Who wants to hear about how much I love how he mushes my butt like a pillow when he wants to lay on it to watch TV or the way he's never given up and asked me to feed Malachi when he's having trouble?

I mean, think about it. Am I going to tell you the story about how he and his brother took three loads of heavy yard debris to the dump? (Yay.) Or, am I going to tell you how I told him they shouldn't take the stroller on their hike together afterwards and then they did anyway and regretted it? 

Of course I'm going to tell you about the stroller, because not only does it show how I'm always right but it has the added benefit of me being able to tell you that other hikers in this progressive part of the country assumed they were two gay dads with their adopted twins, which is hilarious and also something I predicted.

But both stories are true and I ought to choose the "my husband is awesome, the end" narrative much more often.

For his first Father's Day, tomorrow, I vow to do exactly that.

My husband is awesome.

The end.

Thursday, June 09, 2011

It's all connected


Malachi's tight extensor (back) muscles make him much flatter on the floor than
 his identical twin, Jaden, who often holds his limbs off the ground.
© Jessie Kirk Photography 


You're going to have to trust me that this was a beautifully eloquent post that perfectly described my thoughts and feelings — until The Great Blogger Blackout of 2011 erased it and I had to start over from scratch. I do apologize. In the immortal words of Tenacious D: "This is just a tribute."

I wanted to explain how connected the human body is and how normal development requires all the pieces to work together. When one of those pieces is missing or interrupted, as with special needs kids, a chain reaction can occur.

For example, let's just say that Malachi's brain damage only affects his triceps. (It's, obviously, much more complicated than that.) So if his triceps — those upper back muscles necessary for rockin' high fives — are a bit tighter than normal, this means that he has a very hard time getting his hands in his mouth, which means he has a hard time getting toys in his mouth.

This means that his teeth are coming in slower and his jaw muscles are underdeveloped, because he hasn't been chewing on things nonstop, like his brother. This means that chewing food will be more difficult, as will repeating consonants ("mamama," "bababa," "Mambo Mama, Mambo Papa, shoutin' olĂ© with it, wow"). It also means that he will have less practice getting his tongue and lips out of the way, leading to possible trouble forming other words — not to mention the very irritating habit of biting one's tongue.

Over-tight triceps also cause trouble when he wants to push up from the ground and, eventually, when he wants to put one arm over the other to crawl. A lack of crawling entirely or just not crawling on time could lead to a variety of movement problems, but also the reduced practice at spatial relationships (i.e. do I have enough clearance over my head to crawl under the table? Can I crawl in between these chairs without getting stuck?).

All of these things, from speech to the skills needed for parallel parking can be traced back to tight triceps. Kind of amazing, huh?

Once certain muscles catch up, there can be a blossoming of movement as all the pent-up abilities are released. I believe that's what we've seen lately after an intensive ABM/Feldenkrais session that really concentrated on opening up his shoulders and upper torso.

But some things may never catch up. In one neurodevelopmental study, they blinded kittens (I know, right? Who does that?) by blindfolding them at a critical period in their development. The kittens' brains received no visual input and so used that space for something else. Even after researchers took off the blindfold, the cats were never able to see. There's no studies like this on humans (understandably) but it does make me wonder how much of what Malachi's disability ends up being will be due to his primary injury or to the secondary effects of missed milestones.

Fortunately for us, the interconnectedness of the human body can work to our advantage. The ABM/Feldenkrais methods teach how one can work around a tense area of the body. On Malachi, this means, for example, we can use his hips to "talk" to his shoulders instead of attacking them directly.

This is good because babies, to their credit, don't understand the meaning of the word "should." As in "you should move your arm this way" or "you should practice wiggling your body to strengthen your core muscles." Unlike we miserable adults, babies don't do things because they feel they have to. They do things that they want to do and things that are easy to do.

It's our job to make things as easy as we can, but it's up to them to do the rest.


*******
Thanks for stopping by! Won't you take a minute to donate to the cause of teaching Malachi to walk? Feldenkrais is not covered by insurance although we believe it is helping tremendously. Even the smallest donation will help us reach our goal of $1,000 before the end of June. See the donation button  at the top of this page in the right hand column. Thank you!

Thursday, June 02, 2011

Why I hate social services

We're not impressed.
© Jessie Kirk Photography 
In case the fact that I'm from Portland, Ore., didn't tip you off, I should tell you that I'm politically left on many issues: I think not raising the debt ceiling would be catastrophic; I think Obama's health care plan is woefully inadequate but still the best thing that's happened to this country in a long time; and I think a hair dryer would do a better job as president than Sarah Palin. (Why a hair dryer? I don't know, but at least it can dry hair quickly, which is more than I can say for Sarah Palin.)

But after spending a year in the maze of bureaucracy that is social services, I can definitely empathize with the visceral feeling from Tea Partiers that we need to shrink government down until it can swim in its own underoos.

Ever since meeting my first social worker in the hospital, I've been trying to figure out what the hell they do. Even though every single one of them is an incredibly nice, kind and caring person, as far as I can tell they do very little of concrete value. They don't physically help with child care or housework; they don't have a list of services they offer; they don't understand the services they refer me to, nor the qualifications for them; they aren't therapists; they don't help fill out applications; they rarely follow through to the end of a bureaucratic wormhole; and, they waste hours of my time asking me the same questions and repeating faulty information previous social workers have given to me. They only thing I have discovered they do well is refer me to other social workers who also don't do anything of real value.

Ahem. A not-so-brief summary, if I may. (And please keep in mind that while we're waiting a month or more to take our next jump through yet another hoop, the precious plasticity of my son's brain — i.e. its ability to rewire around the damage — is hardening.)

My first social worker was while I was pregnant on bed rest at the hospital. Confused that she didn't seem to have anything to offer me, the only thing I could think of to ask her for was how to get a hold of a doula or other person who could be my advocate during the birth process. She literally gave me a packet of earplugs, on which was the number for a doula service, which didn't exist anymore. The earplugs did come in handy, though, so I guess that's something.

My second was a man at the NICU who came at a time when I was very, very angry with everyone and even when I did manage to swallow my emotions long enough to express a need, he would simply nod as if that helped in some way. After I made it clear to him that he was useless, the hospital's social workers generally avoided me, which was fine by me.

Then a woman called the day before we were moving into my in-laws' (my husband and I had given up trying to take care of newborn twins alone) to say she was a nurse from the county who could help me. WHERE HAVE YOU BEEN? I asked her, imagining a NICU nurse who was offering part-time nanny services. We agreed to meet as soon as we moved back home, but I discovered at that point that she was yet another nice person who just wanted to talk and "connect" me with "services."

Which, to her credit, she did, leading to a meeting of three people from the school district who still just sat around and talked. Those people got me a meeting with Malachi's Early Intervention physical therapist, who at her first visit still was only planning to do an intake interview (i.e. talk) until I insisted she actually do something. To this day she is one of only two people from the government who physically help me treat Malachi.

The not-a-NICU-nurse-or-nanny also got me a meeting with someone from some other branch of government called Developmental Disability Services. A man came to my house and, as I had come to expect, simply talked. By this time I was really angry and I asked him what he was physically going to do to help me and when that would be. He told me that he was simply the intake social worker and that someone would contact me later to help, if we qualified.

Months passed. I wrote to the not-a-NICU nurse to find out what happened. She dug around and discovered that the man from disability services had completely misspelled my son's name and asked his doctor for medical records. Our pediatrician never responded (likely because the request was indecipherable) and we were stuck in a bureaucratic limbo. Not-a-NICU nurse jump-started the process, getting the request for medical records resent, which finally led to a phone call from a woman who still had Malachi's name misspelled and wasn't informed of any of his medical history, despite that being so vital as to hold up our application process for months.

Yesterday was a meeting with that woman, her supervisor (for some unknown reason), and our not-a-NICU nurse. I think it's fair to say I was combative at this meeting and demanded to know what they were going to do to help me. They explained that their job was to help me "identify needs."

I said: "OK, I need three things: Money, time, and medical care for my son. Help me get those things."

Well, respite care services had been cut, they said. Have you tried Social Security Disability, they asked, like EVERY SINGLE SOCIAL WORKER BEFORE THEM. And, just like EVERY SINGLE SOCIAL WORKER BEFORE THEM, they didn't believe me when I explained to them that you have to be very, very poor (i.e. have less than $2,000 in total assets) to qualify for Social Security Disability and that it was a waste of my time to enter into the very lengthy application process for something I knew I would be denied.

Finally, I complained that our Early Intervention physical therapist was the only person who physically put her hands on Malachi and helped me treat him. This latest in a line of more than a dozen social workers assigned to us this year said: "Well, that's her job."

And I said, "Yeah. And I wish there were a whole lot more of people like her and a whole lot fewer of people like you."

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