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.

Thursday, September 22, 2011

97 percent (on 'Bringing the Sunshine')

Hello everybody!

I'm happy to announce a post swap with my blogging friend Andi Sligh over at Bringing the Sunshine! My post called "97 percent" will appear there today and her post "Living Life with a Double Dose of Special" will appear here next Tuesday.

I'm really excited about this, as with the last time I did a guest post, as it will introduce you, my wonderful readers, to another blog that I enjoy. Andi has the very unique perspective of the mother of a 8-year-old girl with cerebral palsy and a 18-month-old with Down syndrome.

Head on over there to check out my latest essay about our pregnancy and the false statistics that shaped it.



Wednesday, September 14, 2011

Wordless Wednesday: UCP Walk Roll & Run

Ok, this Wordless Wednesday will have a few words:

Last Saturday was our first Walk, Roll & Run event, which is an annual fundraiser (this year we raised $84,000!) for our local chapter of United Cerebral Palsy.

I'm sure this is typical of many first-time parents, but I found myself staring at everyone and trying to figure out if Malachi will have that gait when he walks or those extraneous hand movements or that type of wheelchair. I couldn't help myself.

What struck me as I looked around was what a huge and varied spectrum of disability cerebral palsy is. No two CP cases are alike and the differences in how it affects people seem so massive to me now. But I know before we started down this path, to me those people were all just "disabled." Period. Well, I probably made a distinction between "disabled but not badly enough or bizarrely enough or intellectually enough to bother me" and "the others," but that's about it. I never really made the distinction of "in a wheelchair but able to feed herself" or "using a walker but able to talk clearly." Now those distinctions seem so important.

So there I was, analyzing and contrasting and comparing everybody's movements. But you know what? Some people who I think are actually normal had pretty weird gaits, too, when you look closely.

How did I not notice that before?



Not the best picture I've ever taken, but considering the sun was shining on my camera
phone and I could see nothing, it's not that bad. This is Malachi, who I was holding,
 and my brother-in-law who sported the Connor's Crew emblem of the team we were on.


There's us with our double stroller. I'm waving.

This is Connor's mom, Kathy. She blogs at http://frytravelogue.blogspot.com/,
though not often. Despite this blogosphere transgression, she is completely awesome. 



My brother-in-law crossing the Hawthorne Bridge. The boys are passed out.

My awesome parents-in-law. We're looking good after walking in the hot
 sun for over an hour! Jaden decided to sleep through the photo op.

Monday, September 12, 2011

Dispatches from The Land of Not OK

Hello Land of OK,

You may not remember us. Or maybe you do remember us and wonder why we don't come to visit more often. Or maybe you don't know us well enough to realize that we've moved.

We were your neighbors once. We lived on your streets and went to your schools and passed by you as we both rushed to work. Do you remember? We were alongside you, cheering and mourning the outcome of sporting events, as if they mattered. Or discussing the latest TV drama or celebrity scandal, as if they mattered. We used to think, like you still do, that a "bad day" was when we had a fender-bender or a burnt dinner. You know, minor, but ultimately fixable problems.

We moved to the Land of Not OK when a truly Bad Day happened. When a problem came along with no solution. When we Lost something. For good. On that day, we realized to our shock and horror that there was no way to walk back through the gate that had slammed behind us. We threw ourselves against the fence for a while and frantically searched for a way back to the Land of OK, but there was none. We were stuck here in the Land of Not OK, even though we still had OK air in our lungs and OK dirt on our feet. It took us a long time to accept that we live here now.

Things are colder here, grayer. But you know that. You've come here before, for visits. It was during those extra 30 minutes when you realized your husband should have been home by now. Or that time the doctor told you bad news that turned out not to be true. Or that brief jaunt through as you watched your youngest take a bad tumble. Your visits usually ended with a big sigh of relief and something along the lines of "Everything's going to be OK."

We remember taking vacations here, too.

Don't get me wrong. It's not as though we can't come visit the Land of OK now and again. In fact, it seems the longer it's been since the gate closed, the longer the visas we are allowed to the Land of OK. Sometimes we get such long visits that you might even think we found a way to move back. But until there is a cure, or we find a way to raise our loved one from the dead or some other way to erase our Loss, we do have permanent residency in the Land of Not OK. We often have to go back for anniversaries, or when we see an OKer who resembles us before our Bad Day, or even for no particular reason at all.

Since you can't possibly know what it's like to live here until you do, there are a few things we'd like you to know about the Land of Not OK. First off is that we are jealous of you OKers, that's true. But that does not mean that we wish you had to live here, too. We are genuinely happy when you get to go back home from your brief visits. But we also don't particularly like tourists because they show us what we don't have and make thoughtless comments about how awful it would be to live here. And we really hate ex-pats: people who are actually OK but like to pretend they're not.

We also want you to know that you aren't any better than us because you live in the posh surrounds of the Land of OK. Neither are we particularly "brave" or "good" or "strong" because we toil away in the Land of Not OK. We didn't choose to live here any more than you would have. Your number could come up just as suddenly as ours did.

We also want you to know that for every time you get to leave, grateful that things have turned out OK, someone else — someone just like you — is here. Someone whose husband never came home. Someone whose doctor was right. Someone whose youngest isn't OK anymore. There's no need to pity them or even mourn for them, but just be aware of that and be respectful of their Loss.

You might have heard stories around the Land of OK of people who say they fought through the gate and found their way back. You might wonder why we can't be like them, too, and come back to stay. Well, the fact is that these people are either lying or naive. They are selling something. Or they are Not OKers on a vacation, unaware that they must return from time to time. Or they are OKers who went on a trip through Not OK but found a solution to their problem and got to move back.

Here's how to tell the difference: Not OKers' Loss is permanent, irreparable and burdensome. You OKers do understand the difference, but sometimes you forget because it is simply impossible to imagine in the Land of OK. Look for it the next time you say with relief: "Things are going to be OK." The opposite of that is that "Things are not OK." That's us. That's where we live. In the Land of Not OK.

So, until you can be equally comfortable with both OK and not-OK outcomes yourself, don't try to convince us that not-OK things are actually OK. You know the difference, and — even though we are looking at it from the other side of the fence — so do we.

Sunday, September 04, 2011

An Anat Baniel Method success story??



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Sorry. I'm just sitting here hoping I can one day remove the question marks from the title of this post.... Sigh.

OK, anyway. First, let me explain a little about what the Anat Baniel Method is. If you're familiar with Feldenkrais, it's like that. If you aren't, let me try to explain it as succinctly as possible.

Malachi with his two ABM practitioners,
who occasionally team up to give him therapy.
The method is built upon the idea that the human brain thrives on making increasingly finer distinctions and greater variations, whether it be in movement or thought patterns or philosophies. Think of how a child moves: very blocky and bold compared to a healthy adult's more fluid movements. Think of how a child thinks: very extreme emotions and strokes of understanding that are very broad compared to a healthy adult's ability to appreciate and express subtle differences.

The method also takes into account the idea — which is today supported by neuroscience — that the human brain has the remarkable ability to become more and more organized (i.e. learn new things), even when damaged. Development does not stop. Ever. That's why you can still learn something new at 8 and at 80.

So, to put it simply, the method works by introducing variation into the movement patterns of children with special needs. It also places emphasis on coordinating and organizing the entire body, bone by bone. As adults this is hard to envision. Because our movements are so engrained, we don't even realize that, for example, in order to reach for a glass of water not just our arm, but our entire spine moves — each and every rib in sequence, etc. But I can tell you from watching Jaden that that is very much what a baby does as he plays. He moves his body in as many ways as he can to figure out what sequence and strength he needs in each muscle to perform a task. To us it just looks like purposeless wiggling. But it's not. (Well, OK. Some of it is.)

Our ABM practitioner has given me a few lessons (I think this is essential if you do it with your child) and here's how I can describe the feeling: Have you ever been somewhere — for example, during a massage — and felt very relaxed? It feels like you are as loose as you are going to get. Then the masseuse pushes on a particular spot or you take a deep breath and suddenly you realize you were holding on to tension you didn't even know was there. You were holding a muscle tight even when you thought you had relaxed it. Once you became aware of the tension, you could release that muscle. That is muscle tone. In my inherently limited understanding of someone without cerebral palsy, that is what it's all about: being unable to control how tight or loose your muscles are. Anat Baniel would say it's because we are unaware of how tight the muscle is. By a practitioner's ability to bring one's focused attention to that muscle, it allows the brain to recognize how it is holding that muscle and form a new pattern, rewriting the old automatic way of doing it.

So that's my understanding of it. Obviously, as with everything else, it's not a panacea and it works better the younger you can possibly start.

But after trying many types of therapy, we do feel like we've found one that really works. There is a clear and definite cause-and-effect relationship between appointments with our practitioner and improvements in Malachi's motor control and mood — something that I can't even say for conventional physical therapy.

I also like that the global philosophy of the method makes sense to me and could even be applied to my life. I've read Anat Baniel's book: Move Into Life, which I thought outlined a fascinating philosophy with broad-ranging applications. (However, I feel obliged to mention that it is a fairly conventional self-help book and didn't necessarily have a lot of specific hands-on applications for Malachi. I hear she is coming out with a new book on special needs children soon. UPDATE 11/30/12: She has and it's fabulous. You can read my review of Kids Beyond Limits here.)

The mechanisms in the method also align with the latest research in neuroscience. And, though we have experienced occasional regression, the results are cumulative.

In fact, we believe in the method so much that it is now our primary form of therapy, with series of twice daily lessons over four days every two weeks. We are even planning an expensive trip (thank you donors!) down to the ABM center in San Rafael in October.

So why, even now, am I reluctant to share with the cerebral palsy community our good news?

I suppose because it's not over yet. I don't have any hard, objective evidence. Malachi is improving, that's true, but he still hasn't reached any of The Important Milestones, like rolling over consistently, sitting up by himself, crawling, standing, walking, etc.

I also don't quite know what to believe. I mean, Anat Baniel — and Moshe Feldenkrais before her — has been doing this for decades and supposedly has had it work "miracles" on people — including getting people who have never been able to walk that ability. I've seen several videos of such people (including this one) who seem to have recovered remarkably.

So where are those people? Why aren't they screaming from the hilltops about their "cure"? Where are the Oprah shows and the 20/20 specials on this amazing method? Why isn't this already an accepted therapy? In fact, ABM folks say it hasn't even earned the research credentials needed to be called a "therapy." It is simply a "method," and as such insurance won't pay for it.

But I guess that's the Catch-22: people don't want to try something that isn't proven and it doesn't get proven until enough people do it that researchers start to take notice. Also in our pharmaceutical-addicted culture, a method that isn't attached to — and in many ways directly challenges — the multibillion-dollar drug industry isn't likely to get funding.

So here's what I know: It's working for us. I have issues with — and have therefore mostly ignored — the part of the method that insists on only allowing a baby to be in a position he or she can get in his- or herself (i.e. no equipment, no conventional therapy UPDATE 11/30/12: I still have issues with this but we don't do conventional therapy or equipment anymore. Here's a little bit of why.). But overall I think ABM is a smart and common sense approach.

And I think you all should look into it, whether or not you are dealing with disability. It's that good.


Update 3/16/12: Anat Baniel's website has been updated and looks much better now.

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