living after the death of a baby, living with Autism, living as a family of six, living on our organic homestead, living miserably, hopefully, and with joy, and somedays just living

Archive for August, 2010

About me

I want to reply to Shaun’s comment from In Reply, but it’s too heavy tonight, and it requires too much thinking.  So instead I worked on improving my blog, I created categories, I’m going to add to the menu, and I finally wrote something in the about me section. Yes, it had been empty until today.  This blog will never be anything, but templated, I don’t have Chad’s mad skills, but it’s a bit more complete.

I would tell you to go to About Me and read it there and count it as my post for today, but incase some counter thingy does get done (I don’t mind if it doesn’t) I want tonight to count, so here it is regurgitated, please place comments, if you care to, in the about me section not here, if you don’t mind.

About Me

I left this empty for a very long time.  I hate ‘about me’ pages.  I open them, and look blankly at the screen.  What do people want to know about me?  What is there to know even?

Often pages like these tend to be somewhat bullet pointed:

Stay at home mother, by choice, to 4 awesome kids, attachment parent loving, Autism mom, blah blah blah, but you know all of that from the title

So, then there’s the flaky useless info, also often bulleted:

Born May 28 1978, Gemini, fun loving, chocolate addicted, blah blah blah, and I never know whether I should use the first or third person.

What I guess I can tell you is who I think I am most days, and who I aspire to be, and what this blog is here for. So here it goes.

This blog was born out of desperation to reach out and communicate with those I love.  After moving to Chicago to follow Kyle’s (my husband) career path I felt lonely and deeply isolated.  I resented having to move, and though I talked with friends back home, I never had the courage to unload how I was feeling with them over the phone.  In the days of being able to reach anyone anywhere, thanks to cell phones, and Skype, where you can now talk face to face over long distances, I loved the the shelter that speaking through type over a computer screen afforded me. I didn’t have to hear their reactions, or hesitations in their voices, or see it on their faces.  People could take my feelings, let them absorb for awhile, and formulate a comment. Or they could read it anonymously, and I would never feel rejected because I wouldn’t know if they read it, or not.

My blog became a place to vent, and be introspective.  I think you get a lot of the real me here.  Who is that?  Well, you decide by browsing the posts.  I can tell you I have been truly whittled to my current self from my experiences.  My most challenging ones have been losing a daughter I loved so deeply, who’s beauty is still breathtaking even in memory, facing Autism daily by being the strongest and best mom I can to Elijah, the boy who came after Kate, the one who was supposed to help make it all better, having a largish family of four kids, five and under, moving internationally twice in two years, and working toward organic self-sufficiency on our hobby farm.

My interests vary over time, but you’ll find them in my posts.  Currently they are about nourishing and healing foods, discovering the best ways to manage Elijah’s quirks bio-medically, and through therapeutic means.  Knitting is my other therapy. Deep down I feel like I’m some sort of artist, and knitting lets me create some form of self expression in short mindless bursts.

Characteristically  I strive to be, and I would hope that my friends may agree that I succeed sometimes to be, first of all human, to care and love others, to be understanding, accepting, compassionate, non-judgmental, loyal, available, and  supportive.  To be the type of person you can confide in.  I long mostly to be comfortable in my skin, and like… no, LOVE, who I am.  Though a pessimist by nature I work at its overcoming by trying to force a sunny view.  Sometimes it works, sometimes it doesn’t, tune in for when it doesn’t, I tend to blog most when my world is going to shit.  I long to be open and opinionated, and not care about backlash, or what others think, but I am an un-overcomeable people pleaser, and my heart bruises easily.

I love when a post gets comments. I love them! I should work harder to comment on the blogs I read.  Offering up comments is a form of generosity.  I love knowing that, hey, you read my stuff, and you were either moved by it, agree with it, or you have something for me to think about.  You can disagree, but comments that are hurtful or defamatory, well, you should keep those to yourself,  and move on to other blogs that fit you better, where the writers are thick skinned.

If you can think of something you’d like to know about me, drop it in the comments box, and I’ll get back to you.

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In Reply

Since I lost tonight’s blog post, and since my reply to Shaun is quite long and really could use some formatting I’m going to post it as it’s own entry, so in order for this post to make sense please read this one What If It’s Not , and in the interest of keeping you from having to flip between this post and What If It’s Not I’ll paste the comment stream between Shaun and myself here.

S: I’m curious as well, those are drastic changes. So what’s changed in the world to cause more Autism? Is that rate continuing?

E: Shaun huge drastic changes indeed, sadly yes the rates are increasing. What’s changed, what causes it, well depends on who you ask. Some say better diagnosis. Can’t be the the cause if you ask me, there’s no way we had just as many developmentally delayed kids and no one noticed. Some of the other reasons include: Food additives, diet changes, (dare I say) Vaccinations, pollution and exposure to toxic elements, poor prenatal care, labour inductions (and a new paper implicates epidurals), genetic predisposition, leaky gut, yeast over growth in the gut, an inability to absorb nutrients, perhaps poor hypothalamus regulation of hormones, and many more I’m sure I’m forgetting, I haven’t heard of yet, or haven’t been discovered.

S: That’s quite interesting yet scary at the same time. However I think part of it HAS to be diagnosis. Medical advances since the 50′s have been huge and we are able to detect more things earlier and easier now then ever before. Yet some things still go undiscovered.

I would also guess the environment has a HUGE part to play. There have been drastic changes in the environment since the 50′s as well and that cannot be overlooked.

Also one thing from my experiences is that there are different levels of autism, correct me if I’m wrong Erron. Cause if it’s 1 in 80 boys then we have A LOT of the population with Autism then.

So many things going on these days with newly born kids, it’s quite scary.

Now, honestly, I wanted to sort of shy away from the the causes of Autism topic, as it’s as rife with controversy as whether you can make a living with Amway Global 😉  But I’ll give some information and if you’re not happy with it spend some time looking over the information out there and come to your own conclusion.  There are alarmists, and naysayers a plenty touting their truths, ha ha you could say it has it’s own spectrum. I like to think I’m fairly intelligent about it all, perhaps a bit fringe.  Please no personal attacks about what I believe.

So in response to Shaun’s last comment:

You know some of it will be diagnosis, but not what you think it would, not the way the stats are rising.    At the risk of seeming crass, if the same level of autism existed then, as it does now we would have been wondering why are so many of our kids are dim, unruly, and so naughty. There’s an article from 2009 using California (as state that’s seen big Autism increases) as an example of increased diagnosis not contributing a significant amount to their rate increases. They focus mostly on environmental causational factors.  I think it’s more complex for most kids.

Also, a shift in doctors diagnosing milder cases explains another 56% increase. And changes in state reporting of the disorder could account for around a 120% increase.

Combined, Hertz-Picciotto said those factors “don’t get us close” to the 600% to 700% increase in diagnosed cases.

click text to read the full article

I think like anything else that’s scary, it’s easier to believe were doing a better job of finding what was already there than acknowledging that our kids are facing elevated risks of developing Autism.  We have to make better decisions about pre-conception, pregnancy, birth, infant and childcare, not just in the face of autism, but also the myriad of other neurological and immunological deficiencies.  Parents need to stop blindly believing what they are told, and find out for themselves. We provide the environment that our kids live in through our actions and our decisions.

You’re right Autism affects kids at different levels; it’s called a spectrum disorder meaning you can be at the low end, or the extreme end.  Are kids with mild Auti symptoms better off than those with severe ones, of course, but they still don’t get the same breaks or opportunities at life experience as those who are “normal”.

You said

Cause if it’s 1 in 80 boys then we have A LOT of the population with Autism then

Your right we do, I know it’s difficult to believe.  From the CDC article on prevalence: In 2006, on average, approximately 1% or one child in every 110 in the 11 ADDM sites was classified as having an ASD (approximate range: 1:80–1:240 children [males: 1:70; females: 1:315]) you can read the whole thing, if you want,  though I don’t blame you if you don’t, it’s kinda dry 🙂   So I guess I was wrong it’s not 1 in 80 for boys, it’s 1 in 70 and that was 4 years ago now.

again click the text to read the full article
ASD is Autism Spectrum Disorder

lost

I completed my post for tonight, and then it was lost.

What if it’s not?

I bet you can complete this phase thousand of pregnant couples have likely uttered today alone.  It doesn’t matter if it’s a boy or a girl as long as it’s________.  But what if you get the gender you were secretly hoping for, but not a healthy baby. What if you don’t find out that your baby is imperfect for years. What if there was no screening test for your babe. What if there is? If you want a healthy baby, and that’s all that matters, you best adopt, and not some beautiful baby, better to wait 5-8 years to be sure.

You see we all take the gamble when our sticks turn blue, or when the newborn is handed to us. We gamble that our babies will be healthy through pregnancy, and be able to survive labor, then we gamble that our newborn exam will be just fine, and then we gamble that they will have a healthy childhood.    And just what is healthy? Is blind okay if everything else is fine, is autism healthy if the body is fine and there’s no struggle for life, or are we really taking about trisomies, childhood cancers, and sudden life robbing illnesses.

I know a lot of families who all got a boy or a girl, but not the perfect child they imagined and it has nothing to do with their parenting.  We’re seeing a greater reduction in birth defects, so the news is good there, but the rates of childhood cancers,  ADHD, Ashma, lethal Allergies are on the rise, and since it’s my specialty I can give you stats for Autism: 3 in 10,000 kids in 1950, 1 in 1000 in 1980, and today the rate is about 1 in 100, or 110, depending on where you get your information, and if you have a boy 1 in 80.

This wasn’t meant to be a scare tactic entry, but something is going on, it can’t be denied, the debate on what is heated and long, and not for this post.  It’s not for any one post, whole blogs explore it, Scientists are devoted to it, and I don’t think there is any one answer.

Counting on the healthy baby as the only thing that matters may be narrow.  Because the love for the baby you didn’t want is just as strong, and will shape you in bigger ways.  Simply, instead of wrapping what’s important in a cliche saying, commit to loving the baby who’s born to you, for who ever she is, for as long as she’s yours.

In a couple of days

In a couple of days I’m going to sift through all the mud in my head and write a really cathartic post about what’s going on around here.  That isn’t meant to be some sort of cliff hanger remark, I really can’t even begin with out giving you most of the details, at least not the important ones anyway, and I need some time to be pensive over what has actually transpired to decide what the important bits even are.

I can tell you we needed to have blood drawn from Elijah to get a few things on the go (things we should have done before now).  I don’t know if I’ve ever experienced Elijah nervous and afraid before.  I’m sure everyone in the waiting room with me will never forget (Kyle went in with him).  We’ve never had Elijah poked before other than the unfortunate vaccinations we did when he was a baby.  Oh my! He screamed and yelled ‘It hurts’ so often, so heartfeltly, and so loudly that I nearly broke.  As a parent there are going to be times that you are going to have to put your kid in a situation that you will want more than anything to protect him from.  Don’t get me wrong I don’t feel that having blood drawn put him in serious peril, but as a parent I would like to never have to force my kid to do something he feels so strongly against .  The only way to know some of the answers we need to move forward was blood.  So it’s done, it was horrible.

And all in all he did great, he was a star, an infinite amount of time trying to get him calm, a few minute to forget that idea and just have Kyle restrain him before the stress killed a 5 year old boy, and two minutes, or so, to collect the vials, and when it was all done he calmed down quickly enough.  After went off to Walmart for the reward.  Yes, I know how some of you feel about the R word, but we use it.  Expecting some great big toy to be placed in the cart, after looking at transformers, race tracks, Wii accessories, board games, Lego, in the end he picked a Hot Wheels car.  Well then, pleased with our good fortune at a $2.00 prize, we suggested he get two, so he got a new Lightning McQueen too.

Autism has me beat these days maybe I need a good reward.  I wonder what I would pick?

in, out, in, out a lesson in breathing

I’m exhausted, things are crazy here.  We’ve been trying to combat a behavior with E and were just getting into the thick of it now.  It’s been excruciating, trying to get in to a specialist, that some referring doctors don’t want to help you get in to see (or rather non referring doctors).  I’ve had to explain the situation to doctors, therapists and friends.  I’ve talked to kyle about it at length.  And now I would like it to be over because it’s, so draining and deflating.  Talking about the negatives of your kid is hard, because you don’t get to talk about all the positive, there’s not enough time, and it’s not relative to the negative behavior were trying to curb, so it gets left out.    But just because I’ve talked about it until it felt like I might be making it up (have you ever told a story so often it no longer feels like yours?), doesn’t make it over, it fact it’s just beginning because now we start the interventions.  So I’ve been out of any motivation to blog , well actually I have blog ideas that I would like to share, just not enough energy at the end of the day or mental capacity to put together a coherent idea.    So for now I going to skip tonight’s blog post and go breath deeply and go to bed early.

Home(stead), Sweet, Home(stead)

DSC_0359

The last few days have been garden intensive.  Friday I dug up potatoes, and cut and processed swiss chard to freeze.   Saturday I dug up potatoes, pulled up onions, and weeded.  Today (Sunday) I braided onions for storage, collected the potatoes that were drying in the dirt, gathered the Zucchini and Summer squash that were getting big ( there’s always one under a leaf that has been secretly growing and is bigger that you’d like), picked and shelled peas, and did some trimming, weeding, and vine propping. Each day we feed and water the pigs and chickens and collect eggs.   What you see above was just today’s work.

 

Downstairs I have a 130lbs of Purple, Fingerling, Russet and Yukon Gold Potatoes combined, I have 5 bags of swiss chard in the freezer with more to come, 21 jars of peaches, 7 jars of various pickles, 3 bags of radishes, two dinners worth of peas (so far), three onion braids and a zip lock full of peeled onions and a lot of zucchini.  I love stockpiling my home grown wares but…

 

I cant wait for next year.  This year I planted most things way too late, so some things never made it, cucumbers and carrots ( though there’s still hope that there will be enough time to get small carrots at least).  Some things like my cabbage taught me that it needs to be covered by gardeners fleece if you want to get even a cabbage, because it’s ravaged by caterpillars, the lettuce was feild planted, and the grass hoppers and chickens got it, it goes in a box next year, other things succumb to the weather.  The corn and beans never germinated due to the cold spring, and my tomatoes got blight due to all our rain.  The beets never made it into the ground and neither did the spinach. 

 

I also planted all the squash all mixed up all together in the pumpkin patch deciding that it didn’t matter. I would know a butternut from a jack-o-lantern, but what i didn’t count on was wondering if that round squash is an eight ball (green when ripe) or a sugar pumpkin (orange when ripe).  And since the squash went in late were still hoping there’s enough frost free days to get some of those lovely overwintering veggies in the cellar.

 

Now that I know what I’m doing, I think, next years garden will be better planned and way more bountiful.  I can’t wait!  Ohh and my apple and plum tree should actually give me a yeild (this year I’ll get about 4-6 fruits from each tree).  I’m all a quiver all ready.