Sunday, June 19, 2011

Blog Prompt 2, Part 2

For this assignment we need to follow a blog. This is the blog I'm going to follow:

www.foodpolitics.com

At the risk of sounding dumb, I'm not sure it's possible to follow this blog the same way you'd follow another Blogger blog. All I'm seeing is an RSS feed button and a Twitter button. So I guess we're going to go honor-system here about me following this one.

Food Politics is actually super interesting. Although I'm a self-proclaimed (as well as literal) fat kid, I am very interested in the way food is processed and prepared. I don't think it's a coincidence that so many Americans are overweight; I think a combination of targeted marketing and highly unhealthy "fake" foods are responsible for this epidemic.

I'm reminded of those commercials they've been playing recently, the ones with people who look well-educated talking about how they've researched corn syrup, and it's the same thing as cane sugar! Pan over to a shot of the speaker feeding his or her family corn syrup-laden foods. Okay, well, corn syrup is not the same thing as cane sugar. For one, corn syrup is much cheaper to produce and is found in basically every food you buy in a box. Exactly what part of "high fructose corn syrup" sounds like "sugar"? I hate sounding like some conspiracy theorist, but 2/3 of Americans weren't overweight or obese before this stuff started cropping up, and the fact that farmers are being federally subsidized to produce it is just sketchy. If high-fructose corn syrup is banned or no longer subsidized, American farmers will be out of work.

I have decided to grow some of my own vegetables this summer, out concern for what I'm eating as well as being too poor to spend $2 on one little green pepper. My grandparents had fantastic gardens all over their property and grew literally every fruit and vegetable you could possibly imagine growing in Maine. I'm growing strawberries, green peppers and lettuce. My lettuce is going to die, and although my green pepper plants are still alive and growing, I don't see any flowers on them yet (maybe it's too early? I have no idea, really). My strawberries are producing fruit, but at the rate of about one ripe strawberry per week. So much for a strawberry pie!

I'm interested to read more of the Food Politics blog. Just because foods are being treated with all-natural pesticides doesn't mean they're safe; heroin is natural too, but I wouldn't ingest that either!

Blog Prompt 2, Part 1

So, alright. What do I specialize in? Well, nothing really - not per se. But one area I'm trying to gain knowledge in (and share knowledge with others about) has to do with my child. I'm not talking about your usual "mommy-blogging" where upper-middle class, stay at home moms do kitschy crafts with their kids, all the while having their DSLR cameras super glued around their necks. You'd probably have to hold a gun to my head to make me read most of those blogs. I've changed enough diapers to know that there's nothing particularly special about it, and unfortunately no cheery/classy/understated Wordpress background is going to convince me otherwise.

What's different about my kid is that he's, well, different. And according to half a dozen specialists scattered throughout the state of Maine, we're not talking about "good" different. We're talking about missing-chromosome-parts-may-never-speak-learning-disabled-look-out-for-seizures different. He also has webbed toes, which he gets from me, although I had no idea that I even had webbed fingers and toes until his geneticist saw me in sandals last summer. It can be pretty depressing at times (and not just about my webbed toes).

I found most of this out about a year ago. My son had a big evaluation because his speech therapists had kicked him out of their practice because he wasn't making enough progress, and obviously since he wasn't speaking he had Autism, because God and Jenny McCarthy both know that any time a 2.5 year old isn't speaking it's the Autism. I didn't believe he had Autism, but the therapists were correct in observing that he wasn't improving and either way they were discharging him. I didn't even know it was possible to discharge a kid for not improving; I thought they'd, you know, work with him until they'd helped him? Like they were being paid to do? Naturally, I was not pleased with the situation and decided to seek medical advice elsewhere, which led us to the evaluation.

The evaluation team diagnosed his speech problem (apraxia) within about twenty minutes of us being at the appointment, and each subsequent doctor we saw that day made it clearer to me that he was not autistic. Woo hoo, I thought, case closed! We were gonna get us some new speech therapists and be on our way, thank you very much!

Not so much.

When the hospital mailed me the official report, listing all of their diagnoses, I ripped into the envelope to see a lab form. No one had mentioned any lab work to me, so I was kind of perplexed. Reading through the report, a developmental pediatrician had decided my son needed blood tests to see if he had any genetic problems, due to his dysmorphological features. My son has always been abnormally cute, but in no way did I think that was indicative of a medical problem, just the result of having attractive parents (although his dad is now getting haggard-looking in his old age...).

Maybe it's due to my young age, or perhaps I'm just naive by nature, but I'd always assumed that medicine - doctors, medical tests, extensive research - was supposed to give its patients answers. Instead, I was given a chart outlining my son's 16th chromosome, with a blown up portion (imagine a weather map of the US, where Hawaii is blown up to look large when it's really teeny-tiny compared to the other states) showing some missing genes. Where the genes were supposed to be, there was instead a helpfully highlighted line that said, "Pre-disposed to Autism and mental retardation."

When you're pregnant, or when your infant is napping peacefully, and you're trying to decide whether he should be a lawyer or an underwear model, the thought doesn't usually cross your mind that your kid could be mentally retarded (actually, that doctor should probably update her lingo, as the PC term is now "intellectually disabled"). But there I was, my three-year-old playing with trains in the waiting room, being told that even if he wasn't legitimately intellectually disabled that he would certainly have learning disabilities.

"Well, if this is genetic, and probably inherited from me or his dad, well, neither of us have learning disabilities, so..."

"No," the geneticist (or maybe the genetic counselor, who knows) said slowly. "The research shows that everyone examined with this chromosome deletion has some degree of learning disabilites."

"Well, couldn't it be that only the people who are learning disabled are getting this testing done, and therefore other people could be walking around with the same deletion but living normal lives? So people aren't getting genetic testing done unless they're having secondary symptoms?"

The worst part about that doctor's visit was that I was told there was basically nothing we could do to correct the situation. I thought they were going to have some answers for me; this deletion has caused X, Y and Z, and now we're going to prescribe him a special diet/pump him full of stem cells/give him some antibiotics and everything will be all good in the hood. Instead I got: treat his secondary symptoms as they come, look out for seizures and make sure they save him a seat in the yellow section (fellow Skowhegan grads will know what I mean there).

This, I guess, is where the story shifts gears. (Had to provide the back story, you know?) I am sort of psychotic, and as such I surround myself with equally psychotic people. I think they each add texture to the fabric of my (and my son's) lives, and the ways they've dealt with his medical issues have helped me create a multi-faceted approach to things.

I am a planner and a researcher. If the doctors didn't have answers for me, I would go somewhere that would: Google. I've read abstracts, I've joined listservs and Facebook groups, bought books, DVDs, nutritional supplements. Nothing has been particularly uplifting, but seeing what other families are going through has made me realize that having a child who doesn't speak isn't even on the same level as what some of these families are experiencing. When I get that pang as I see my 2 year old niece progressing more quickly and able to do more things physically than my almost 4 year old, I'm reminded of such-and-such on Chromosome Deletion Outreach listserv who's child just had a trach inserted, or of the child on the apraxia site who wasn't even diagnosed until age 9 and is trying to make up for lost time.

My parents try not to acknowledge my son's differences. I wouldn't call it denial, because there's really no denying that there's something wrong with my son. Their attitudes are great in a way, though, because they see their grandson first, and allow him to be a spoiled, bratty child instead of making everything into extra therapy time.

When I told my best friend that the doctor had said he'd be learning disabled, she said, "When I think of someone with a learning disability, I think of a kid who needs extra practice to learn multiplication." Simplistic, yes, but for all anyone knows that could be what we're up against here, not some dire disabilities.

Here's the part where I educate my readers (like all 1 of you who've stuck with me thus far).

Doctors cannot be too optimistic, because it's better to be prepared for the worst than to foolishly believe you'll be that 1-in-a-million to beat the odds. I'm sure that most doctors are very happy if their patients do overcome seemingly insurmountable odds, but it would be unrealistic for doctors to expect positive outcomes for all of their patients. So when a doctor tells me that my kid won't do something, I keep it in mind that he may not be able to do it, prepare myself for that possibility and for what our options will be at that point, but I seriously do believe that there's always a chance he could do it anyway.

That brings me to the next important piece of parenting a special needs kid - be prepared to advocate for your child. You will be up against brisk doctors, therapists who think they graduated at the top of the Harvard University School of Knowing Everything on the Planet, ignorant relatives (and ignorant friends, acquaintances and strangers), cheapskate insurance companies, hospital policies and the list goes on and on. It's like fighting Chuck Norris with an army of zombified Steven Segals. It's not easy or fun, but it needs to be done lest your child be denied services or otherwise belittled. Even people whose children are "typical" should do this, because I imagine we all have those moments when someone snaps at our children and although we feel they've acted inappropriately we don't want to start a confrontation or undermine another adult in front of said child. In general, I don't think people do things just to be mean, I think they don't know any better. So do the world a favor and put them in their places and teach them a little thing called "tact."

Also, you, the parent, will be put under a fine-toothed comb. There will be psychologists, psychiatrists, social workers, third-party case workers, along with doctors and therapists, who will question every move you make. You will find yourself explaining your choices over and over again. And not just medical choices - everything in your life is going to be questioned. Does it really matter whether or not I've had any live-in boyfriends during my child's life, or whether I was popular in high school or what the issues in my marriage were? The scrutiny is very stressful. Of course it matters, because we all know children who supposedly have every issue ever cited in medical literature, whose real problem is that their parent is a certified whackjob who dreams of collecting Social Security Disability from their children. But for the rest of us (me at least), it's difficult to have your entire life story up for discussion.

My final piece of advice, as my son is climbing on me whining, "Mama, dwiiiiink," is that you need to separate the child from the disability. You don't have an autistic son or a nonverbal daughter - your child had an identity before they were diagnosed with a disability, even if they were diagnosed while in utero. There's a notable difference between that and having a child who happens to have whatever disability. Put the child first. My life became much easier once I learned to make that distinction. It allows the child to be his or herself and it lets the parent put that space between the child and their issues. Naturally there are times when you have to be the mama-bear, but most of the rest of the time should be focused on your child and developing their personality and their skills.

Tuesday, June 14, 2011

Blog Prompt 2, Part 3

(A little bit out of order, but bear with me here.)

Is blogging a good way to get information out to the masses? It seems to be, especially if you can get your blog syndicated with a major website. As a reader, though, I feel that you need to be very careful when reading blogs; blogs are like the Wikipedia of editorial/opinion pieces, meaning that you can never really be sure who is writing these things or whether the information they're giving is factual.

Are blogs a useful marketing tool? Yes, definitely. I read a few blogs that will occasionally review items or have giveaways of products. The blogging network is a big one, with bloggers cross-linking to other blogs that mention them and sites like BlogHer acting basically as a blog aggregator - so the effects of a blogger's words can be far-reaching. I think the personal narrative style of blogs make readers feel as though they're reading a consumer report (although often the bloggers are paid or given free products by the company they're promoting). I'm personally not a big fan of these "paid advertisements." For me to take a product review seriously I would need to trust the blogger, but some people may not hold bloggers to my standards and may think they're getting an unbiased opinion when they're really not.

Sunday, June 12, 2011

Blog Assignment 1

Nightswimming deserves a quiet night - and it was a quiet July night. It was also the last normal night of my life, and really, it was the last night of my life. But I didn't know any of that at the time; instead, I was focused solely on sneaking out of my house with my best friend to take a ride to Waterville for a spicy chicken sandwich from Wendy's.

Obviously, we were a couple of nineteen-year-olds living our lives on the edge. What can I say? It was a gentler time, 2007, Amber was a newlywed Army wife and I was a pregnant girl on bed rest. At this point Wendy's was still making its spicy chicken sandwiches with actual chicken, not the weird, squishy stuff you find between the buns nowadays, and there was really nothing more appealing to a poor pregnant lady who'd been laying on her side watching infomercials and sucking in dry, air-conditioned air for two weeks.

Amber picked me up in the green 4Runner she'd nearly killed me in a few months earlier when she'd rear-ended someone in traffic. I waited for her in the balmy darkness on my neighbor's porch swing, hoping my parents wouldn't drive by my apartment building and see that my windows were dark and I wasn't in bed.

We drove to Waterville, chatting the entire way. Amber is one of the few people that there is never a lapse in conversation with; my shyness and limited social circle has always been eclipsed by her busy life, so there's never a loss for conversation topics. One thing that has been variably annoying at times during our friendship is that many of our outings end up being Amber-oriented, usually by the addition of various friends and family members and their issues. That night was no exception.

After ordering our sandwiches, double-checked for hairs because Amber mouthed off to the drive-thru attendant (per usual), she sped her truck down back roads and into the middle of nowhere to pick up her aunt. I hadn't had much exposure to her aunt, but I did know that she was having problems with her boyfriend and he'd kicked her out of the house.

Kathy, my best friend's aunt, was a very tall, loud woman, who went on and on about her idiot boyfriend. She also climbed into the back seat of Amber's truck with a disposable plastic cup and a bottle of coffee brandy, asking to be brought to a gas station to buy some milk to mix with it. Now, I wasn't raised in a family of Puritans or anything, but for whatever reason, driving around with a crazy woman nursing a party-cup filled with booze was quite off-putting to me, as well as being very bizarre and kind of alarming.

We drove around for awhile, listening to Kathy ramble on. Eventually she decided that we needed to go swimming. Amber tried to talk her out of it, using me and my should-be-resting fetus as an excuse not to go.

"You're no fun," Kathy told me. "No offense, but this would be much better if you weren't here so we could go swimming."

I wasn't offended, mostly because she was clearly sort of psychotic, and partially because I was starting to agree that my night would also be much better if I wasn't there.

But Kathy kept at me, in that insistent way that drunks have about them. "It's too bad you're pregnant, or else we could really have fun. I want to go swimming, Amber."

Finally, I told Amber that we should just give in and go swimming. We went to a boat landing and waded in the lake, with the truck's headlights as our only source of light. I can't swim, so my time was spent wading around through the muddy silt and sitting on the dock while my friend and her weird aunt swam around like kids would.

A short while later we headed back to through the grassy lawn to the parking lot, climbing in to the truck, grass and dirt clinging to our still-wet legs. Kathy sloshed more milk and coffee brandy into her cup, Amber turned on the CD player to some indie band we'd forget about in a week.

It was a strange turn of events, but overall it had been a peaceful way to spend a hot summer night, rowdy relatives aside. I went into labor with my son the next day, so that was my last child-free excursion, giving me a whole new appreciation of what a "quiet night" really is.

*Just to clarify - sneaking out of the house while on bed rest is a big no-no, and it's something that I would never consider if ever in the same circumstances again.