Wednesday, February 29, 2012

Whew. Thank goodness that's over.

Finally! I made it!

Here we are on this extra day of my short NaBloPoMo month. It has been a real experience blogging every day this month. I have been able to get a lot of thoughts that have been simmering in the back of my mind out in the open.

We talked about disability issues and ableism. We talked about inclusive education and how being a special needs parent is like the Iraq War.

We saw many cute pictures and a couple cute videos.

I gave out tips and definitions and wondered if my son were turning invisible.

We talked about my novella for a week and I even made it free for a weekend, an offer that more than 300 of you took me up on.

And, finally, you helped me celebrate this blog's one-year anniversary just by being here, sharing in my experience, commiserating, co-rejoicing and participating in thoughtful discussions.

Thank you.

But I'm quite sleepy.

Now back to our regularly scheduled programming....





Tuesday, February 28, 2012

When worse is somehow better

Today we had another appointment with our new neurodevelopmental pediatrician. Yeah, that one.

I'm still struggling to wrap my head around the things she told me, but since I put off writing my once-a-day post until now, I have to write about it because it's all I can think about.

First, the good news: Malachi has gained a pound and grown 3/4 of an inch in two months. Yay!

Then, the sort-of bad news. I asked her for more information on why she thought Malachi's expression of CP was unusual. She said that she would guess that 999 out of a thousand preemies with PVL (Malachi's type of brain injury) have spastic diplegia — tight legs, pretty well-functioning trunk and hands, like this awesome kid. Malachi instead shows a lack of control that would be seen from damage in the basal ganglia. Our old neurodevelopmental pediatrician told us this, too, although he called it extrapyramidal cerebral palsy. What he neglected to tell us is that in order for the bleed to have reached the basal ganglia, it most likely means that the damage is a lot more severe than we thought.

Awesome.

If I would have heard this a year ago, I would have dissolved into uncontrollable tears.

But today, strangely, I was actually kind of glad to hear this. Malachi is nearly 20 months old. He can't roll, sit, crawl or really do any independent gross motor movement, despite lots and lots of work and hope. To hear that the damage is worse than we thought sort of lowers the bar. Now I can pretend all our hard work has paid off in some way and that he is doing better than expected instead of worse.

Because despite how much I research and pay attention to new therapies and methods, I know exactly what is proven to be far and away the most effective in preventing motor control problems:

Not getting brain damage.

I know lots and lots of parents who love their kids with CP and work really hard for them. Some of their kids are doing really well, like this one, others, not so much. I sincerely don't believe it's because some parents love their kids more, or tried more things, or stuck to the best thing, or whatever. I think of it like the 80/20 rule. Maybe with all of the awesomest therapy and the best-trained folks, you could improve your kid's functionality 20 percent. And that's awesome and totally worth trying for. But 80 percent is just the way it is.

That brain done got damaged and that's that.


Monday, February 27, 2012

Guest post on Life of the Differently Abled

Remember last week when I posted a piece about what CP feels like from Laura at Life of the Differently Abled?

Today, she continued our exchange by posting something from me over on her blog. Go check it out! And while you're there, poke around her site to hear from an adult's perspective on having spastic quadriplegic cerebral palsy!


Shasta, Jaden and Malachi (in green).
Photo by Jessie Kirk Photogr

Sunday, February 26, 2012

What is disability when the taboo is taken away?

Strip away racism and the color of your skin only really matters in your risk of sunburn and maybe skin cancer. Strip away sexism and your gender really only matters in your reproductive capabilities. Strip away sexualism and your sexuality really... well... really doesn't matter at all.

But strip away ableism and what do you have left? Well, you still have the disability. 

I'm not saying that the disability is bad. I'm not saying that the disability doesn't allow for other aspects of the person to be "super-abled," far more capable at something than a typical person. I'm saying the disability is hard. I'm saying the disability makes things more difficult at certain times. As an able-bodied woman, I can't speak for people with disabilities, so let me say loud and clear that I know this is true because my son's disability often makes things more difficult for me.

This is why I balk when people tell me that there is no reason to mention a person's disability unless it's in a medical context. It is difficult for me to care for a child with cerebral palsy and I want to talk about it. Saying that I should just ignore it makes me feel like I just have to silently bear the difficult parts — and silently celebrate the joyful parts — because it shouldn't be an issue.

Except that it is.

Difficulty can ultimately be a good thing. Having any child is difficult. Going to college is difficult. Being married is difficult. We grow and learn and change through difficulty and often come out better people with richer lives. But the difference between those things — having a child, going to college or getting married — and having a child with a disability is that almost no one chooses to endure the difficulty that comes with a disability. Is that just because they are prejudiced? Maybe.

Or maybe it's because it is different.

I've tried for months now to come up with an appropriate metaphor. I wanted to say it's like being drafted, but being drafted sounds much worse because you have to kill people. Perhaps, it's like being drafted into going to college, I wondered? You learn a ton, grow a ton and come out the other side better for the experience but it is not at all the path you wanted or imagined your life taking.

Then I realized what it is like. What it is exactly like and it made me wonder why it had taken me so long to figure it out.

It's like having twins. You almost always can't choose to have twins. It's difficult and throws all your plans out the window. It's wonderful and messy and joyous, yes, all of those things, too. But when people see you in the store they know exactly what to say: "Boy, you have your hands full." Or, "Oh, I always wanted twins." Or, "Wow, are those twins?" It can get annoying when you hear these things 10 times a day, but it's not offensive or insulting to talk about it.

I think that's what disability would be like if there were no taboo, no shame. People would understand right off the bat that you were enduring something difficult and wouldn't think twice about commenting on it if they had a mind to, or ignoring it if they didn't care.

That's the world I want to live in. Where Malachi's disability is something I can talk about just as readily as I talk about having twins. Where people feel as comfortable asking me about it as they do about commenting on my twins.

How do we get to that world?


Jessie Kirk Photography




P.S. I tried to find a way to work in this definition of ableism from Wikipedia, but couldn't. I think it is wonderfully descriptive.
A network of beliefs, processes and practices that produces a particular kind of self and body (the corporeal standard) that is projected as the perfect, species-typical, and therefore essential and fully human. Disability is then cast as a diminished state of being human. (emphasis mine)



Stumbo Family Story
This post is part of the CP Connection, a monthly blog party for all cerebral palsy-related blogs! Click the above graphic to read more or participate in this blog party!

Saturday, February 25, 2012

If we don't talk about disability,
will it go away?




I've spent a lot of time in the last year and a half imagining what the world would look like if disability were considered normal. What if it were no more remarkable than the color of a person's eyes?

There are many people who advocate this idea. To them, a disability is just like a person's race or gender. So, for example, just like we wouldn't need the backstory on an able-bodied person to judge his singing ability, neither should we ask the disabled person.

Many of the people who commented on my quest to find the best way to address the elephant in the room said there is no reason for me to say anything at all. In fact, by being upfront about it, I would be giving Malachi's cerebral palsy primacy in who he is and how people see him. The best thing to do, said many commenters, is to not talk about it or be very brief.

As much as I try to think about it in this way, it just doesn't ring true for me. Not talking about disability will not make it seem more normal in someone else's eyes. Not talking about a taboo is not an effective way to erase the fear, uncertainty and discomfort the majority population has about it. The only thing that helps in the long-term is talking about it, and guiding others towards satisfying their curiosity about it in a safe and respectful way — something they almost certainly won't know how to do automatically.

It reminds me of a time when I was about 16. In preparation to volunteer at a domestic violence shelter, I was in a group training with about 20 other people, all much older than me. There were several black women in the group and at one point the conversation turned to oppressive language and how saying "black" was offensive but saying "African-American" was inaccurate. Someone else chimed in with: "I hate it when I hear the term 'people of color.' I mean, I don't see any clear people walking around!" Everybody nodded and mumbled their assent, but I had had enough.

I told them how important race issues still were in this country and how important it was for us to have words to talk about them. Taking away term after term or otherwise making the majority population scared or ashamed when they are trying to be appropriate will just make us not want to try the next time. Even if the words are not perfect, we have to be willing to see the intent behind them. Until racism is well and truly not an issue at all, we still need ways to describe each other. Simply erasing them from the language won't make the prejudice go away.

Likewise, simply not talking about an obvious or unusual issue will not make it seem normal.


Friday, February 24, 2012

A fabulous performance with a huge unspoken question

Today's post builds on the issues discussed here and involves some audience participation. Got your No. 2 pencil ready? Good!

Step 1: Get a box of tissues.

Step 2: Watch this video. (Seriously, watch it. It's awesome and worthwhile, the rest of the post is about it and, c'mon, what else do you have to do right now?)





Step 3. Discuss.

In particular, I want you to ask yourself whether you think the producers should have indicated his disability earlier or later or not at all. How would your view of his performance have changed if you didn't know his backstory? Would his rendition of "Imagine" been as emotional, poignant and powerful? If he hadn't talked about his disability at all would you have been distracted during his performance, wondering what the deal was? If they hadn't said anything, would you wonder why they kept flashing on a white woman identified as his "mum" and his brother, another young Arabic amputee? Or is that all ultimately not relevant to his singing ability and therefore shouldn't be discussed?

Step 4. Scroll back to 1:20 when one of the judges asks how old Emmanuel is. Note how he responds: "I'm not exactly sure." Do you think he says that every time someone asks his age? Or does he have to decide each time someone asks him this simple question whether it's worth going into the whole story? Also note the pause after his answer. What if he hadn't voluntarily continued to talk about it? What would have been a polite way for the judges to ask about his disability — clearly a fascinating part of who he is — without seeming like they were prejudicial or trying to define him?

At what point do we address the elephant in the room?

Thursday, February 23, 2012

What does it feel like to have cerebral palsy? (Guest post)

A question I've been wrestling with for a while is "What does cerebral palsy feel like?"


So, I asked a blogging buddy who writes at Life of the Differently Abled. If you want a window on the life of an adult with CP, I highly recommend you check out her blog.


Here's what she said when I asked her what CP feels like:



Hello to the loyal readers and new friends of this blog and my great appreciation goes to Shasta for allowing me the opportunity for a guest post. Shasta approached me to try and understand her son who has cerebral palsy and what it felt like.

My name is Laura Forde. I am college educated and live in Canada. I myself, have quad spastic cerebral palsy and one of Shasta’s questions to me was something that I have spent a little time pondering before writing this post, she asked: what does cerebral palsy feels like I’m asked this question frequently and have done my best to describe the physical feelings of cerebral palsy but in that previous post I neglected the emotional component of cerebral palsy.

I have come to the harsh reality that cerebral palsy means I am physically slower. This when I was a child worked against me, I was often left out by my peers this wasn’t meanness. This I feel was simply something that was a norm for me. My physical disability and use of wheelchair seemed to automatically label me as different. I won’t lie that difference presented a sense of social isolation. That being said I have always had a small but mighty core group of friends.

Thank you for allowing me this introduction and I hope you will invite me back  


Wednesday, February 22, 2012

Wordless Wednesday: O, HAI, I CAN HAS LAP NOW?




This is probably only funny to me, but oh well.

I love lolcats, so it's past due that I made my own featuring our very own Tilly. She's been great since the boys came home, but once they are asleep, she INSISTS that it's her turn now. She will follow me around the house yelling at me until I sit down so she can sit on me. This picture was taken when I had the audacity to put my feet up on the chair and hug my knees to my chest, denying her a lap.

No dice, said Tilly.

(BTW, I don't need to explain what lolcats are, right?)

Tuesday, February 21, 2012

The elephant in the room

The older my boys get, the more I find myself in public with them, knowing the person next to me is in the process of figuring out that there is something not quite right about one of them.

Today I went to a library storytime for babies. For most of it, Malachi was in my arms while Jaden roamed the room, but that wasn't too unusual; many other children were in laps as well. But at a certain point the storyteller brought out a bucket of toys for everyone to play with. This apparently was the cue for the moms to start chatting while their children were happily distracted. I spent a few minutes helping Malachi pick out and play with toys, but I had come with another multiple mom and I wanted to chat, too. So I left him laying on his back on the floor in the middle of the room.

I'm probably being paranoid, but it seemed like I could feel, one by one, the mothers in that room asking themselves and each other a silent question: "What is wrong with that kid?"

They didn't act weird towards me or towards Malachi; they acted like everything was normal. But we all knew there was an elephant in the room and no one knew how to bring it up.

I've heard enough times by now that people take their cue about how to react to your child's disability from you. If you act like it's no big deal, they will too.

I guess I'm just not sure what the best way to "act like it's no big deal" is. If it truly is something that doesn't matter and isn't shameful, doesn't that mean you talk openly about it? And since people aren't going to ask you directly because they are worried about offending you, should you just be upfront and boldly answer their unspoken question? How do you do that in a way that doesn't seem self-conscious? How do you do that in a group situation?

Recently, I tried to "break" the news to a twin mom who was praising my courage for getting out by myself with the two of them. "Well," I laughed, pointing at Malachi, "he doesn't move very fast." She didn't laugh. She was just confused and unsure if it was something OK to laugh about.

Another time, a dad asked what was "up" with Malachi. Relieved, I launched into an explanation about his CP only to realize he wasn't asking about that at all.

Many other times, I've sat silently, wondering if they are wondering. I think about how I would want to be asked, but nothing sounds good. I don't envy their role any more than mine.

Does anybody really know? How exactly does one address the elephant in the room?


Monday, February 20, 2012

Jaden is just a stellar human being

This blog — as well as the majority of my waking thoughts — is mostly about Malachi and his condition. This is not a surprise to me. In fact, it's one of the biggest things I feared when I heard Malachi's diagnosis, the thing that seemed excruciatingly unfair. That not only would he suffer but his identical twin would be deprived of an equal station in his parents' lives and would probably grow to resent that.

Nineteen months later, I can say that he has. As much as I try to pay attention to Jaden, Malachi just requires so much more of me and I can tell Jaden is starting to resent it. Jaden's typical power play involves books because he's the one who can walk over and pick one out. He picks the book he wants and shoves it into Malachi's face — not my hands — when I've been helping Malachi play for too long.

Recently, I asked my mother-in-law if she could take Malachi so Jaden and I could have a day together. I think he really enjoyed himself and I know I did. We spent what seemed like hours reading book after book while he got to sit in my lap — the place that Malachi usually occupies because he can't sit up by himself.

Jaden is just a stellar human being and I wish I could have a whole blog devoted to him and his awesomeness. But I only have so much time, so I decided to collect here a list of the amazing and incredibly cute things he's done in recent weeks. Keep in mind that he is only 17 months adjusted age and so far doesn't talk (at least in real words) a whole lot. I think even you folks who don't have the great fortune to be his mother will be impressed.





- Recognizes when things are trash (examples include used tissues, a tiny piece torn from a book, outdoor debris, bottle caps, etc.) and throws them away.

- Puts dirty laundry in the hamper (this one needs a little more guidance or else he starts taking out clean clothes from the drawers and putting them in too... as if I didn't do enough laundry already.)

- Squints his eyes and crinkles his nose in a sort of sarcastic, yet good-natured, "you think you're so funny" look.

- Pauses in the middle of walking whenever he hears music and begins to dance.

- Has two dances: a sort of low booty drop that most toddlers have while standing and a weaving Stevie Wonder dance while sitting, sometimes combined with the squinty eyes in a comedy double-punch.

- When I put a diaper on the ground and tell him it's time to change his diaper he'll come close and lay down so I can put it on. However, he does hilariously lay down several feet away from where I've put the diaper.

- When I say it's time to potty he makes the sign for toilet, excitedly runs to his special potty, sits down and says "pssssss." (So far no actual business has made it into the potty, but I'm good with pretend for now.)

- Enthusiastically points out every. Single. Cat. Anywhere. This is best exemplified by a recent trip to a big box store where we found ourselves in the cat food and litter aisle. I only caught the last few seconds on tape. This had been going on for at least a minute before I thought to get my camera out.



"Cat! Cat!" from Shasta Kearns Moore on Vimeo.


Such a good kid.

Sunday, February 19, 2012

Is my son turning invisible?

Jessie Kirk Photography



Malachi has been doing really well lately.

He scoots around on his scooter board like nobody's business and his communication has blossomed. He says "mama" all the time now and I never get tired of it. I hope to never forget the expression of pure joy and satisfaction on his face when those two syllables get my attention. He also spontaneously says "nana" for banana, "ehzz" for eyes, "chzzz" for cheese and "szz" for shoes. He can sign "more," "store" (default word for "let's go") and "berries," even though he doesn't actually like berries. He also says "ssss" when I talk about the potty and sometimes does "baba" for baby.

In front of him, I act like these things are no big deal. Sure, I praise and reward him, but I try to keep my attitude similar to when Jaden learns a new skill. I don't want to go overboard for Malachi or treat him more differently than I already do.

But every once in a while I allow myself a swelling of pride and a sigh of relief. I still don't know what the future holds, but I can be reasonably certain that he will at least be mobile with assistance and verbal. Those two things take an enormous weight off my shoulders.

Despite these marvelous advances, I feel like I'm beginning to notice the very early signs of Malachi's invisibility. Yesterday, a relative said Jaden was the "right age" for a toy, as if his twin brother weren't exactly the same age. And today at the science museum, a worker looked me in the eye and asked how old Jaden was, as if his genetic copy weren't strapped to my chest and staring her right in the face.

I certainly don't think that in either of these cases the people were being malicious. I think it's like when we are driving, it is hard to see bicycles because we are looking for car-shaped things. We are programmed to think of independently upright creatures as sentient. Dependent or immobile creatures simply don't trigger the appropriate cues in people who aren't used to people with disabilities.

This is yet another reason why I think integrated schools are necessary.

But it made me sad. And it made me wonder what I can do now to smooth the way for my son. Or if there even is anything I can do.

Then I got online and I read an article from the mother of a child with a genetic condition. The mother laments the fact that as her child, a high-schooler named Ben, grew up, his friends slowly disappeared. She read studies that found that children with disabilities are segregated, not because of ability or transportation issues, but by attitudes:

Then there was the Holland Bloorview research that showed teachers and students alike shut out kids with cerebral palsy in regular classes. "The kids act like I am invisible," one participant said. And it's not just the children. A teacher turns off a student's communication device, rendering the student silent. Another teacher refuses to allow a child to have a bathroom communication button -- so the child, toilet-trained, must wear diapers. The reason? The button would disturb other students.
And the final nail in the coffin? In Dr. Anne Snowdon's recent study of 166 families in three Canadian cities, more than half of children with physical and developmental disabilities have no friends or only one friend. Only 1 per cent spend an hour a day with a friend.


I can't tell you how depressing this is to me. It is exactly what I've feared for Malachi since the day we got his diagnosis.

But then I read another blog post from another mother of a boy named Ben. She is halfway through a six-week intensive therapy session with her identical twin son who has undergone surgery in an attempt to gain the ability to walk. Like me, today she finds herself hopeful, but worried.

She found this boy, also named Ben.

Ben has cerebral palsy. Ben runs. And, most importantly, Ben has friends.

Ben is not invisible, and there's no reason my son has to be.





Saturday, February 18, 2012

Do we crave a lack of privacy?

I have to admit, I was a little shocked when I read the headline How Target Figured Out a Teen Girl was Pregnant Before Her Father Did. As I read the article and the even more fascinating New York Times article it was based on, I was a little surprised at just how much information a corporation could get in addition to your sales history:

Also linked to your Guest ID is demographic information like your age, whether you are married and have kids, which part of town you live in, how long it takes you to drive to the store, your estimated salary, whether you’ve moved recently, what credit cards you carry in your wallet and what Web sites you visit. Target can buy data about your ethnicity, job history, the magazines you read, if you’ve ever declared bankruptcy or got divorced, the year you bought (or lost) your house, where you went to college, what kinds of topics you talk about online, whether you prefer certain brands of coffee, paper towels, cereal or applesauce, your political leanings, reading habits, charitable giving and the number of cars you own. (In a statement, Target declined to identify what demographic information it collects or purchases.) All that information is meaningless, however, without someone to analyze and make sense of it. That’s where Andrew Pole and the dozens of other members of Target’s Guest Marketing Analytics department come in.

But by the end of the article, I arrived at the same place I always arrive at when privacy advocates fret about Google changing its privacy policy or Facebook mining your data. What's the harm? Target is using all of these complicated maneuvers to send you coupons for things you need at the exact moment you need them. Oh no. And Facebook wants to show you advertisements for things you might actually be interested in. Dammit.

(So why don't I get ads for chocolate?)

This article in Time does list some scarier (though hypothetical) consequences, like employers declining to hire you based on your "likes," and insurance companies declining to insure you based on your food purchases. That would suck. And I like the ideas talked about here of the government forcing ISPs to have a private browsing feature, or other ways of opting out of online tracking.

I'm also frightened of the idea that a stalker, or a government prosecutor or someone else could use all the electronic data on me out there to hurt me personally, but most of what I see is companies using this data in aggregate to find out what 28-year-old women want to buy.

(It's chocolate.)

I guess I feel like our modern level of privacy is a relatively new and kind of unnatural thing. Before, we all lived in tribes or small towns and everybody knew what everybody else was doing most of the time. And perhaps that's what we are craving. That's why so many of us do willingly share our private lives with corporations, like Facebook and Google. Not because we are ignorant to the fact that they are "listening in" but because we crave the connection with our online tribe so much. We want less privacy.

So I'm not happy about all the data mining that goes on out there, but am I deluding myself to think that as long as we are savvy consumers, it's not harmful?

Probably.

After all, I do have an entire website devoted to my innermost feelings....



Here's more information on how people who aren't Facebook can analyze your Facebook data: http://www.webdistortion.com/2010/10/24/datamine-facebook/
And here is a way an advertising industry group has enabled people to see who is tracking them and opt-out: http://www.networkadvertising.org/managing/opt_out.asp

Friday, February 17, 2012

What is extrapyramidal cerebral palsy?

Before I had Malachi, I thought that "special needs" or "disability" was sort of one big monolithic thing. I didn't know anything about cerebral palsy, but I think if you'd forced me to define it I would have said it was an inability to walk, or something really clear and defined like that.

Now I know that cerebral palsy is pretty much anything, from a barely noticeable speech impediment to a complete reliance on technology to perform such tasks as eating and defecating. So many different things can be affected either directly or indirectly by brain damage that early in life and there are so many different parts of the brain that can be affected, and all to varying degrees.

Malachi's "brand" of cerebral palsy is called extrapyramidal. We were told this last year when he was officially diagnosed with CP. Since then, other medical professionals have used the terms "mixed," "nonspastic" and "athetoid" to describe his CP.

This is pretty confusing to us laypeople. A couple weeks ago, these terms came up in a Facebook discussion group and I realized we weren't the only ones trying to figure out what this meant. People there found my explanations helpful, so I thought I'd post them here*:





Extrapyramidal refers to the structure of the brain that was affected. It is a relatively rare diagnosis, about 10-15 percent of cases. It is deep in the brain so it is unlikely to affect white brain matter, which is cognition. Because of the brain parts affected, patients either present as "nonspastic" or with a mix of spastic and nonspastic muscle tones.

Most people with CP are spastic in some way. I have no experience with spasticity, but what I've gathered is that their affected muscles are near-constantly clenched and there's nothing they can consciously do about it. Even in their sleep, that muscle is clenched. (The origin of the profane "retard" chest thump with a bent wrist is a spastic hand movement.) If you would like to learn more about life with spasticity I recommend this blog or this blog as they obviously has more idea what it's about than I do!

Malachi has uncoordinated movements and either too much or too little tone at any given moment to accomplish a task effectively ("mixed") but he isn't spastic. When he is sleeping or at rest, there are no muscles that are clenched and he has full range of motion, so he is nonspastic.

Athetoid is one of four types of unusual movements that people with damage in the extrapyramidal part of their brain display, the others being ataxia, dystonia and chorea. I regret to say that I have no good information about what athetosis is. As soon as I think I understand it, I talk to a different medical professional and they say, "Oh, no, that's not it." I've come to the conclusion that there is no standard, globally understood definition for athetosis.

When I have interrogated my (very learned) PT about this diagnosis conundrum, he shrugs and says it used to be called simply "mixed" and that it doesn't really matter what you call it. 

It doesn't, really. But, really, it does.



* Please keep in mind that I'm not a medical expert in any way! If you are or you have a different understanding of these terms, please tell me about it in the comments. I'm very open to discussion and possible corrections. And if you're an adult with any of these diagnoses I'd love to talk to you!

Thursday, February 16, 2012

Last minute post...

Oops! Almost blew my NaBloPoMo!

Soo... this won't be much of a post, but last year my nascent blog was given a huge boost by the Circle of Mom's Top 25 Most Inspiring Blogs list. Maybe that's how you found me!

Anyway, I wasn't paying much attention, but I was nominated for it again this year. I would love it if you would take a couple seconds to click on this link or the pink graphic below my banner, scroll down to find my blog (at last look it was No. 13) and click "vote."

You can do it every day until March 3 if you are so inclined!

And thanks!

Wednesday, February 15, 2012

Our romantic getaway to the
Oregon Gardens

OK, I cheated you out of an ushy-gushy Valentine's Day post yesterday, so for our Wordless Wednesday I'm sharing lots of pictures of a pre-Valentine's Day overnight stay at the beautiful Oregon Gardens. We were very impressed with our stay. Even in the dead of winter the gardens are quite beautiful.

Feel free to take a mini-vacation at your computer right now:




My 1970s album cover. ;)








We also went to nearby Silver Falls:






By the way, in case you didn't know, I love my husband very much.


Tuesday, February 14, 2012

Disability is natural, but learning how to interact with the disabled isn't

(This is the third and final part in a series. You can read the first and second parts by following those links.)


The presentation of "Including Samuel" that I went to began with an interesting slideshow from Disability is Natural, which said that with one in five people claiming a disability, they are the largest minority in the United States.

(These census stats confirm this and are fascinating if you want to look deeper into it. They are about 10 years old, but I think it's safe to assume the percentages are approximately the same today. For example, I had no idea 11 percent of children are disabled.)

This is a minority group that crosses all other boundaries of race, class, gender, religion and culture. It is a group that anyone can enter and practically everyone will enter at some point in their lives, either through birth defects, injury, illness or old age.

Put that way, it is hard to believe that this population is still so maligned and so invisible in mainstream culture.

It's the invisibility part that I think is most concerning about segregated special education. Like many of the adults in "Including Samuel," my school experience was that the children with disabilities were segregated into a "Life Skills" class and we only saw them at lunch, if at all. One of my friends was friends with one of the students with Down syndrome and she would sometimes come over to our table, but those encounters were brief and novel. I never really had to interact with people with disabilities so I never learned how.

You might say — particularly if you have a disability — it's easy! Just treat them like anyone else!

It's not easy. When I talk to or even see an adult with cerebral palsy, I have no idea where to put my eyes. I want desperately to inspect their wheelchair, their gait, their hand control, but I don't want to be accused of one of the seven deadly able-bodied sins: Staring. I feel self-conscious. I have a million personal questions that are totally inappropriate to ask a stranger (When did you learn how to walk? How well did you do in school? Is your daily life difficult? Can you drive? What does it feel like when you can't control your body?) so I stumble and stutter to find small talk topics. I am clueless for how to interpret facial expressions on someone who doesn't have normal control of their facial muscles — particularly those with low muscle tone, making them appear sullen — and therefore constantly worry that they are irritated at me.

I know that someday in the future this will be second nature to me. But for now it's not. And I marvel that even people with disabilities think this is easy because the range even just within the CP spectrum is so huge. 

I guess it's because by being part of the group, they have more occasion to interact with other members of that group, even those whose disabling attributes are very different from their own. So I know the solution is simply to interact more frequently with people with disabilities. It's worked for me with other groups of people, most notably when I fell into a crowd of Gabonese in France. Growing up and now living in suburban Oregon, black people are a rarity. I was nervous and self-conscious around my new African friends, but they were welcoming and little by little I learned how to interact with them and it didn't feel awkward anymore. I most certainly did not treat them "like anyone else" because we treat everyone differently according to who they are. If I had treated them like my French professors, for example, they would have been very put off and we never would have become friends.

Likewise, my acquired comfort with interacting with French Africans does not translate to interacting with black Americans. They have a different culture that has nothing to do with their similar skin color and I still rarely interact with them so I feel awkward when I do.

Considering all my travels and all the languages I've learned, I doubt I'm particularly xenophobic or prejudiced. Learning how to interact with people who are different than you is not automatic because no one is born knowing everyone else's culture.

For that reason, going to school in an inclusive classroom is as much to me about Jaden's education as it is about Malachi's.

Jessie Kirk Photography


(What? You were expecting a Valentine's Day post? Click that link to find out why I think V day is weird.)

Monday, February 13, 2012

How being a special needs parent is like the Iraq War

Yesterday, I told you about "Including Samuel," a documentary primarily about a little boy with fairly severe CP who was enrolled in a typical kindergarten class.

Imagining a world where disability is normal and Malachi is seen as just another child would take a huge load off my mind — and I do think that inclusive education is a giant step in the right direction.

But I have to be honest and say that it's not the entire equation for me. Malachi's functionality and independence is important to me too. It's for those reasons that I've worked very hard ever since his diagnosis to find and implement as many therapies and interventions as I can.

Jessie Kirk Photography


Without that fire, that burning need to help him overcome this, I know in my heart Malachi would have less functionality than he has now and be set up for a more constrained life. (How much more? That I couldn't say.)

Beyond a doubt, my husband and I would have been happier if we could have just shrugged and said: "OK, cerebral palsy, cool, whatever." But here's the rub: Until a person is two years old, "more" (Again, how much more? No one knows.) can be done to rewire the brain than at any time afterwards. This is a biological function. It enables babies to learn lots of complex tasks like walking and talking without having to study, something I'm sure they would be very bad at.

So that puts me in this weird place of at once being Malachi's biggest cheerleader and his biggest critic. I did the best I could and gave him as many opportunities as I could and so mostly I feel OK about where we are now because I honestly don't think I could have done better. But many days I feel like screaming at Malachi — and, I'm ashamed to admit, some days I do — that I am working so hard to teach you to roll/sit/crawl. Why don't you know how yet??? Even other children with cerebral palsy can roll/sit/crawl by now!

So it's very hard for me to "accept" Malachi's CP when I'm working so hard to help him overcome it. As his second birthday approaches, though, I am beginning to feel like I can shift focus toward accepting him the way he is and urging others to do the same.

I'm looking forward to that time. I think it will be a relief in many ways. But I also don't think I could have skipped straight to it without jeopardizing some of his functionality.

For some reason this puts me in mind of the Iraq War. There was this huge burst of energy to try to "accomplish" an undefinable goal, lots of sacrifices made, small battles won, and probably some big badness avoided. But after all's said and done it's hard to claim "victory," because real life is messier than that. It's hard to know if what we did really made a difference or if we just want to believe it did.

At least we can draw down our "troops" in two years instead of 10....


(Tomorrow I have the final part of my thoughts after watching "Including Samuel.")

Sunday, February 12, 2012

'Including Samuel' shows how we all benefit from including special needs kids in regular classrooms



Yesterday, I saw a screening of "Including Samuel", a documentary based primarily on the life of Samuel Habib, a kindergartener with cerebral palsy. I found it to be an informative and objective look at inclusive education and I urge you to watch it if you can. Here's the preview:





The film has lots of interesting perspectives on segregated special education and how it neither serves special needs nor typical students. Education professionals noted how much better children learned and teachers taught when they had to pay more attention to the idea that not everyone has the same capabilities. But it also had perspectives from a teacher who was frustrated to tears about how to include a special needs kid in her class and another special needs student who did far better in a more therapeutic atmosphere.

The real message of the film, I thought, was that inclusion doesn't automatically make community but automatically not including everyone undercuts a community. As one person said during the discussion after the film, graduates of special education don't get to live in a special world separated from their able-bodied peers.

And I know very intimately how segregating special needs kids can make it difficult for a typical person to see them as normal and natural. How much easier would it have been to learn of Malachi's condition if I'd spent more than an hour with anyone with CP?

I had to blink back tears many times during the film, but particularly during scenes when they interviewed Samuel's classmates. The concept that Samuel might be "special" seemed totally foreign to them. When asked about him, his classmates reported his favorite color or that he likes spaceships — not that he is in a wheelchair, not that he speaks unclearly, not that he doesn't eat by mouth. That those things were not worth mentioning was heart-warming and frankly awe-inspiring.

I was also fascinated with the scenes of home life with Samuel and his interactions with his older brother, Isaiah. The two clearly loved each other enormously and Isaiah seemed not to consider Samuel's disability a big factor in who he was as a person. When asked what it would be like if his brother didn't have CP, Isaiah thought about it for a little while then said: "He would be able to annoy me more."

Clearly this is just not a high priority for Isaiah.

I could take a few pages from his book.


(I had so much more to say about this topic that I decided to break it into three parts. Check back tomorrow and the next day for more.)

Saturday, February 11, 2012

My one-year blog-o-versary:
richer in all ways but one

Today is the one-year anniversary of my very first post on this blog.

Well, that's not quite true. Before I requisitioned it to talk about my outrageous fortune, this blog had been collecting dust as a class project from the University of Oregon, so technically THIS was the first post. It's surprising how well it foreshadows my current situation.

..."how to make a living off it" indeed.

This blog has not been a major source of income for me. I never really expected it to be (OK, maybe I did dream a little) but I did think it would give me a little housewife mad money.

I think I've technically made about $100, although I'm learning that Internet advertisers are remarkably slow and unreliable about payment so I've only seen about $60 of that so far.

Not much for one's blood, sweat and (lots of) tears.

It wasn't totally delusional of me to think that I might make some money at this. After all, I do have a degree in writing. And there are several success stories out there — dooce, Hyperbole and a HalfEnjoying the Small Things, and, most recently, Momestery — to name a few.

As soon as you "make it," people, of course, line up to ask you how you did it. This is where things get weird. What I can tell from reading all their success stories is that they just had fun and did what they wanted and eventually people noticed — LOTS of people. None of the bloggers I've read who "made it" felt that they used any tricks or self-marketed in any particular way (or at all).

Warren Whitlock, a new Twitter acquaintance who runs a blog called Profitable Social Media, might have the answer for why.

"STOP trying to get and start giving," Whitlock says. "...Be seen as someone who GIVES help, support and attention to others."

As I said in the comments to that post, I know he's right because it's what I've heard a zillion times from various bloggers who "made it." So that means it must be true, right?

But for every one of those who skyrocketed to success there are thousands of us stuck down here on Earth and I can't help but think that pure chance plays a greater role than we want to admit.

(Yet another theme you can read about in my awesome book! OK, OK, I'm stopping, I'm stopping.)

You see, though I'm very grateful to the handful of people who participated in my giveaway, this last week of trying to promote my novella was a pretty big flop. It's hard to interpret the crickets I'm hearing, but I'm going to take a wild guess and say Whitlock is right. If you ask for compensation for your work, it puts people off and you are less likely to get it than if people just feel drawn to it and to supporting you.

It's hard to trust in that. But I'm realizing I don't have a choice. I even decided to make A Twist of Fate free this weekend to see what happens and because why not? I'm not making any money at it anyway, so I might as well give it to anyone who might enjoy it.

And really, that suits me just fine. I'm horrible about self-promotion. I don't really like Twitter. (That's right. I said it.) I've felt awkward and needy posting about my book all the time. What I really want to do is what I've been doing all along: writing about what I feel, connecting with other parents of multiples with cerebral palsy, learning so much more about the world of special needs, and finding many other wonderful, inspiring and informative bloggers.

These benefits don't pay the bills, but they have saved my sanity, and for them I say starting this blog a year ago was a fabulous success.

You have to give to get? OK.

Got it.

Photo courtesy Jessie Kirk Photography


Friday, February 10, 2012

Results of the giveaway plus A SURPRISE!

Thank you to everybody who entered the giveaway!

This was my first giveaway, so I apologize that I didn't make the rules very clear. I guess I assumed that everyone who entered would leave a comment since that's the easiest one to do. So, even people who didn't leave a comment but entered in the other ways, such as liking my Facebook page or adding it to their shelf on Good Reads were entered even though I indicated that leaving a comment was required.

So, with the results chosen from random.org, the winners are.....

Ross and Terri!

Ross entered an amazing SIX times, but Terri only entered once with a review on Good Reads. Amazing! I guess that really is "true randomness."

Feeling disappointed because you didn't win, huh? I've been there.

Soooo.....

In celebration of my blog's one-year anniversary, and to thank all my readers, A Twist of Fate will be FREE to EVERYONE this entire weekend. That is, from midnight tonight to midnight on Sunday, you, your brother, your dog, ANYONE can download my novella for FREE.

That's right! Free!

Spread the word and happy reading!

Thanks to my friend Andrea for this beautiful photo!

Thursday, February 09, 2012

New EXCERPT from A Twist of Fate


Hi folks,


As promised, here is a never-before-seen (unless you've already read the book!) excerpt from A Twist of Fate.

In this scene, Brandy, a rich girl from California, has been transported into the life of Sita, a girl from the Mumbai slums. Sita recently got in trouble with Sahib for defending Nemo, a young boy and her frequent companion.

*****


Brandy and Nemo talked quietly for hours just outside the door to the shack while the woman and girls slept together in the large bed.
Nemo, feeling guilty that Brandy had suffered such an obvious brain sickness on his behalf, patiently answered her questions, as bizarre and self-evident as many of them seemed. He often had to rephrase when she didn’t understand even common Hindi expressions. He explained that their neighborhood, full of relatively new arrivals to the slums, had no choice but to buy water from Sahib, a gangster who controlled what was supposed to be a public spigot. The government, he said disdainfully, had turned a blind eye for years and the people had long ago given up hope of ridding themselves of Sahib’s rule. The slum folks were simply no match against Sahib’s power and wealth.
A trickle of those folks, mostly female heads of household, stopped by to offer their condolences for the family’s hard luck along with a meager offering of food or supplies. Brandy couldn’t help but think how much their donations were like a drop in a bucket — like many drops in a bucket — and this gave her an idea.
Eventually, Brandy ran out of questions, at least those Nemo could answer. She asked Nemo to meet her there in the morning and spent a restless night thinking about her strategy and trying to ignore the flea bites and the smell of the bedding.
The next morning, Brandy cleaned herself up the best she could. She was able to get most of the visible dirt out of her clothes but she puzzled over the tear in the jeans for a while. She knew that sewing it would do no good — even if Maa had been able to find a strong enough needle to work through denim — as the stitching would be immediately obvious. Finally, she borrowed the shears used for cutting long lengths of cloth into manageable pieces and created a mirror image slash on the back of the other pant leg. She hoped it looked like a new fashion trend, and, she decided, it sort of did.
Nemo soon appeared and the two headed for their first destination: the run-down TV repair shop several blocks away where Nemo acquired his name. The small boy banged loudly on the rusty metal security door on the corner of the shop. Amir Khan and his son of the same name lived above the store. The father peered out his upper floor doorway, saw it was Nemo and shouted down the steps: “Yes? What do you want, little one?”
“Is Amir home? We need to speak with him. It’s urgent.”
“Well, I know there was some trouble with Sahib’s pump house but I don’t think he’s left yet…” Mr. Khan said and disappeared inside without further explanation.
A few minutes later, the younger Amir bounded down the steps, throwing on a faded T-shirt as he went. He stopped short when he saw Brandy.
“Sita? Is that you?”
“Uh... yeah.” Brandy made a note to sound more sure about this in the future.
“Well, uh, you look good. I mean, where’d you get those clothes, and your hair is really… nice.”
Brandy forged ahead with her plan as much to stop Amir from staring as to speed up her progress.
“Amir, Nemo says you might be able to do this,” Brandy said, pulling out a scrap of cardboard she’d taken from the dump and on which she’d etched a diagram with an inkless pen.
He examined the diagram and looked up at Brandy in surprise, then at Nemo in disbelief and started laughing.
Brandy was getting annoyed. She tried to snatch back the drawing but he was too quick.
“Are you serious? Where did you get this anyway?” he said, holding the cardboard scrap just out of reach.
“Look, I thought you were a plumber or something, but if you can’t do it, just give it back. Give. It. Back,” she said, jumping. Amir was still grinning.
Haa, yeah, I can do it, the question is, can you? This is going to cost money, you know.”
Brandy rolled back on her heels and glared at him.
“Yeah, I know.” She paused, then, angrily: “How much?”
“A lot. Like, a couple lakh, at least.”
She turned to Nemo. “What’s a lakh?” After an evening of such painfully stupid questions, Nemo was able to take it in stride and ignored Amir’s incredulity.
“A lakh is 100,000 rupees, remember Sita? Just like a crore is 100 lakh.”
“Ok, right, I got it.” She turned back to Amir. “So, if I got a couple lakh, you could do this? We could make this happen here?”
Amir looked back at the drawing and ran his fingers through his soft black hair. He was quiet for a long time when finally he said:
“Sahib is sure not going to like this. I’d be out of a job for sure if it didn’t work.” He paused. “But, if you can get that money and find a location, I’ll do it for you.”
Nemo cheered, Brandy grinned.
“Deal! Ok,” she said to Nemo, giving a quick high five, “let’s go get that money.”
“Where do you think two slum kids are going to get that kind of money?” Amir shouted after them, but they were already gone.




*****

This post is part of a week-long push to convince you that my novella is awesome. It includes a giveaway that you should enter! 
A Twist of Fate is now available for FREE to Amazon Prime subscribers. Otherwise, it's just $2.99 for the Kindle version (you can download a FREE Kindle app to view it on) or $6.99 for a printed version. 





Wednesday, February 08, 2012

Wordless Wednesday:
Awesome book + cute twins




This post is part of a week-long push to convince you that my novella is awesome. It includes a giveaway that you should enter! 
A Twist of Fate is now available for FREE to Amazon Prime subscribers. Otherwise, it's just $2.99 for the Kindle version (you can download a FREE Kindle app to view it on your personal computer) or $6.99 for a printed version. 

Tuesday, February 07, 2012

A summary of the reviews of A Twist of Fate

If you are like me, you are looking for the following things in a book:

- Well-written
- An entertaining story
- A thought-provoking premise
- Strong female characters
- A quick read
- Exotic locales
- Something that will stick with you and teach you something about yourself

A Twist of Fate is all of those things and more. If you don't believe me, read the reviews on Amazon. Here's a sample:

"I did not put this book down until I finished it. It was that riveting and it made me want to know more."

"I'm grateful for this work of intense creativity and fast-paced, multifaceted storytelling. The book's philosophical challenge: Will you be brave enough to see the world as it really is, or content to think of it only as you wish it to be? Wonderful work by a clever and astute literary talent."
"A Twist of Fate by Shasta Kearns Moore is an amazing first-attempt at fiction for an author. It is an entertaining and mind-grabbing story, pitting three different women against three interwoven fates."

"Each of the three main characters, all strong female protagonists, were interesting and flawed and unlike any characters I've encountered in fiction. ... It's a thought-provoking work. I look forward to more from this author."







This post is part of a week-long push to convince you that my novella is awesome. It includes a giveaway that you should enter! 
A Twist of Fate is now available for FREE to Amazon Prime subscribers. Otherwise, it's just $2.99 for the Kindle version (you can download a FREE Kindle app to view it on) or $6.99 for a printed version. 

Monday, February 06, 2012

GIVEAWAY! Signed copies of A Twist of Fate



Yesterday, I told you that all this week on OutrageousFortune.net we are talking about my novella, A Twist of Fate, and how great it is.

Today, I'm opening a giveaway of not one but TWO signed copies of A Twist of Fate. Enter as many times and ways as you like!

Enter by:

1. Commenting on this post (If I don't know you already, remember to put your e-mail address so I can contact you if you win!).
2. Tweeting about this giveaway (please be sure to include @outrageousblog so I can count them, and follow you if I'm not already!).
3. Liking my Facebook page.
4. Posting to your friends on Facebook about my giveaway.
7. And, if you've already read it, writing a review on its Amazon.com page or on your own blog would not only get you an entry but my undying gratitude!

To help me keep track of all the entries, it is required that you include in your comment here all the ways and times that you entered. Saying something like "1, 2, 6" is fine. Winners, who will be chosen from  random.org, will have their entries verified.

As the week goes on, I will post a new passage from the book, a sample of reviews, the results of this giveaway and, finally, my blog's one-year anniversary post.

Happy reading!

A Twist of Fate is now available for FREE to Amazon Prime subscribers. Otherwise, it's just $2.99 for the Kindle version (you can download a FREE Kindle app to view it on) or $6.99 for a printed version. 




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