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

My blog has been neglected.  I had a goal of posting once a week.  Unfortunately my last few starts have been such heavy and controversial topics, I’m intimidated to finish them, begin writing them, and most certainly to publish them.  I’ve got works in progress about timing for sharing pregnancy news featuring baby death, one about food and why we’re working at self sufficiency featuring nutrition for Autism symptoms, and one that has been floating in my head about Autism, and its suspected causes, featuring why the vaccination debate will never go away.

In the mean time, I’ve met this amazing mom blogger who inspires me.  Somehow, she manages to write everyday.  I don’t know how she finds the time.  I would accuse her of making her kids up, but she speaks from a heart that undeniably has children.   I highly recommend her blog if you have kids, have a child with ASD, have had a baby die, or if you have multiples.  Can you believe we have that much in common?  Oh, and both our husbands are teachers, and are prince charming handsome.  How is that for unbelievable?  You can blog stalk her here, Four, plus an angel

Her posts aren’t always very long, but always packed full of head nodding and the like, and her short post today has inspired me to just write a post, partly on inclusion too, or more like exclusion.  Today she writes a letter to her storytime mom’s group telling them why she’s not going back, and it’s about acceptance.  It got me to thinking about our playgroup experiences, why we quit before we could be kicked out, and how those moms choose not to let me into their circle because Elijah refused to be a part of the music circle.  I was the mom with the weird kid.  This was before our Autism diagnosis.  I wonder how many of them assumed there must be something wrong with my kid, which then got me to thinking about this time at church, which is what this post is about:

Somehow I’ve become a lapsed Catholic.  There was a time when I wondered how people could let that happen.  I was self-righteous, I figured if I could make it to church after Katie died, after having twins, and later with two toddlers and a baby, there was no good reason for anyone else to allow their faith to lapse.  That was until Autism.

When we packed up and made the big move to Chicago we figured we would find community at church, and we did meet some great friends in the young families group there, who are friends still.   Though we were going through the gauntlet with Elijah,( two and a half to three and a half  was my own personal hell) we continued to go to church every week.  He couldn’t sit still, he couldn’t keep quiet, he wouldn’t play quietly during the service.  I could feel all eyes on me when he would scream, run away, or otherwise misbehave.  I was embarrassed.  I couldn’t understand why my kid was so unmanageable.  I was strict, I would glare angrily over at Kyle when I felt he wasn’t doing enough to keep him in line.  I wanted nothing more than for him to be like the other kids there, and I figured by continuing to go every week he would eventually learn.

One Sunday, while sitting near the front, I was holding Elijah, who was trying his best to break free, so he could run around like Max from Where The Wild Things Are.  Frustrated that I was stronger than he was, he screamed, and lunged forward and bit my face HARD, I had lingering teeth marks in my cheek.  I was mortified, people saw, and I imagined they must think, that he is either the most unruly kid in the world, or I was the worst parent.

Soon after that we stopped going to church.  I needed the break.  Somewhere in that break we got a diagnosis of Autism for Elijah.  Sometime later we went back one Sunday for a service.  While taking Elijah out for a walk during the service in the foyer, I ran into a lovely woman who said we had been missed, and wondered what had been keeping us away.  Upon telling her we had been coming to terms with an autism diagnosis for Elijah and we needed some distance,  she said,” Oh, we thought it might be something like that. ”

I died a little inside that day.  It was obvious to everyone that my kid was damaged, I wasn’t ready for that.  I wasn’t ready to know that people were armchair diagnosing my kid with various neurological disorders, either.

Shortly after that we were packing up and moving again.  We didn’t do much to find a church.  The Catholic church believes that church should be experienced as a family, so there’s little in the way of children’s services.   Besides I’m not sure if Eli could go to an unparented children’s bible study, or if he’d be too much, and we’d be kicked out of one more thing.    He doesn’t do mass so well either, it’s too long for him, and doesn’t hold his interest.   We could go to a more intresting chruch, one that’s louder, has more music, a better program for kids, but I don’t want to, I feel like I’m a Catholic.  So now I’m a lapsed Catholic, because I don’t feel like we can go to church.

I miss  going to church, I miss the communion with God, I miss the quiet moment dedicated to prayer.  I miss believing.  Over time , I’ve come to worry at the possibility of no God.   In some small round about way Autism has stolen my faith, along with my energy, patience, and the parent I imagined I would be.  No God means no Heaven, and no Heaven means no future with Kate.  Autism, it seems, is slowly stealing her away as well, it’s too unfair. I pretend I still have faith. I cling to it with hope, that in saying it out loud it might make it true, but I worry about nothingness with a dread I can’t even begin to explain.

So I stand at this crossroad wondering what to do.  Give up being a Catholic for a church we might integrate into better, give up church, or start going to a Catholic church again and pretend the eyes on me aren’t there, when Eli starts making sound effects during communion prayers.  I’ve been standing here for some time, and I imagine I’ll stand here a bit longer, losing my faith all the while.

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‘Now get me that Marshmallow!’

Or it could very well be,

“What?! I don’t get any broccoli?!” (our kids really like broccoli)

Which usually leads to me saying something like. “I won’t get you anything, if you talk to me like that. Please try again politely.”

I want my kids to have good manners. The world is kinder to you if you do, and respect is reflected.

So, why is it that I can be so bad at thank you? Face to face I’m good, but in extended graces I can be terrible.

Next Sunday will mark a year since Micah’s birth.  At the beginning of April it will mark a year since Kyle’s Grandmother died.

At the funeral Kyles Aunt R said “I have a little something for Micah, it’s in my car.”  She’s always been so sweet and always buys a little something for all the new babies, and Kyle’s family is rather big.

Somewhere between the service and in interment we never connected, and the present was sent to us a few weeks later with Kyles parents when they made their annual visit from the Philippines, where they are retired.

It was a lovely hand crocheted blanket. Done in a rainbow of colours. Being the fourth child it was the only one he got. The littles, being the firsts, could have drown in all the hand made blankies they got.  I love it, and we use it all the time.

After opening it I made a little mental note to send an email. Then I told my mother in law to remind me, she did, and I still managed by the time she left, to have it on my list of things to do.

Now I’m a busy mom of four, there is no arguing, the kids are all under 5, and the baby has been,well, an infant for the past year, but no one is so busy that they can’t take a few minutes to say thank you.  Unfortunately, once I back burnered it, it was something that would often drift up to my forebrain just as I was falling asleep;  ‘tomorrow, I must remember to send that thank you’.  Eventually I forgot to think of it every day.  It became something I thought of whenever I would pull out the blanket, usually as I was wrapping it around him to take him from the house to the car, so I would think; ‘when I get home I should remember that email’

Somehow, impossibly, a year has crept up, and I still haven’t said thank you.  Part of me  is embarrassed to send an email now, after such a long stretch, but as they say, better late than never, so here it goes.

Dear Aunt R,

Thank you so much for the beautiful blanket you made for Micah.  We love it, he and I both.  It was his bassinet blanket.  As an infant I kept an antique bassinet downstairs, so that he could be close while the kids and I played, he slept so peacefully in it.  He is the picture of perfection wrapped in it’s soft colours.  Once he was too big for the bassinet, it became the blanket we use to go from the house to the car.  Your blanket has kept him warm, and has served as bit of home that  travels with him, whether to the supermarket, or on trips to other provinces.

Thank you, for the generous gift, as someone who knits and crochets, I know the work that goes into handmade items like this. Please forgive me for being so tardy with the thank you, you deserved long before now.

Erron

I am lucky, I really am, I have this amazing husband, but if there’s one thing he’s not, it’s romantic.   Seriously, we don’t celebrate Valentines Day, or our Anniversary in any sentimental way.  We’re too practical.

I know a friend who flew to Vancouver secretly, there and back in a day,  so he could present his bride with a blue Tiffany’s box on their wedding day.  I dream of stuff like this, but it’s not the stuff that Kyle is made up of.  Heck if we get in a big argument there aren’t even flowers when he gets home.  I can’t actually remember the last time I got flowers, it was either for my Anniversary, or Micah’s birth, but not both.  Even his flower choices are always practical, mixed bouquets because they last the longest, and cost less than roses.

When I was pregnant there was no way he’d ever make a craving run, and there was no sparkly present from a small box when I delivered our babies.  He is not with out his romantic gestures, while dating I did get a whole pile of roses once, and for our tenth anniversary I did get sapphires, though I really wanted a Parisian vacation, the sapphires where a delightful surprise.

He’s not a man of grand gestures, or public displays of affection, nor though, is he a burly man’s man. It’s just really easy for us to get caught up in the daily task of parenting, and forget that we are also a married couple.  Our needs take second place to those of our children.  We’re also in the thickest, most time intensive part of parenting.  Currently we have 4 kids, 5 and under.  It will ease over time and there will be more time for us, as our kids become more independent.  For now though, we can go a whole day without stopping to hug or kiss each other.

And despite all of this, despite, my wish for the husband strait out of a romantic comedy.  I believe I have a love greater than most.  I never worry that our love will fade, or that we may not make it.  I know we are solid.  In talking with some other women, many have  spoken of the relief of having their spouses go to work,  and on those blissful business trips.   Life is easier when he isn’t around for short spells some feel.   I, on the other hand, would prefer to have my husband home with me everyday.  I get the driving you crazy because he does things differently than me bit, because we have that same issue, but I still would rather look up from my incorrectly made lunch and see him across the table.

There was a time when we would languish in each others arms on the sofa for hours, and wake up with our bodies tangled together.  Now there are only brief moments on the couch together, and we never wake up  pressed against each other like two spoons, because some small person is invariably in between us.

We have been through some terrible things, things that split marriages apart for others.  We met at 17 and 19, and married young at barely 20 and 21.  We made it through living well below the poverty line while Kyle finished grad school, we came out the other side after the death of a child, we’ve dealt with stressful family dramas, we overcame an international move (twice), and we continue to persevere while parenting a sparkling boy with Autism, even though we believe very different things about the cause of it, and have had serious head butting issues on how best to treat it, and parent for it.

We’ve taken on each of these challenges as they come, one at at time.  We’ve faced each of them, we use them to strengthen our commitment to each other, and to love regardless of how empty life can seem.   We haven’t allowed the wedge, that can be driven between people, get to deep between us.  It sneaks in some times, and it can be difficult to remove, but we do.  The greatest part is, it’s a joint effort, we pull each other together, each of us, equality.

I know I am loved a great, deep and meaningful love, and that is an immense gift.  I live a, not always so happily ever after, fairytale romance.

Thank you Kyle for loving me, ever flawed, never perfect, but always in love with you.

List of Jewelry Purchasers

I figure I should put up a list of those who have purchased
in a more prominent spot. These are the people I have made
orders for and have received payment from, with a few small
exceptions. I am waiting on a couple of cheques, but you’ve told me
they’ve been sent, so I’ve ordered for you. Also a couple of
orders came in after I ordered from the Puzzling Piece, I
should have enough pieces to mail out, if I borrow from the ones
that were donated and ours. Then I’ll reorder the pieces for
donation, since our gala isn’t until March where they will be
auctioned of to benefit Autism Services, unless you have specified
to have your piece donated to another parent.

Please verify that I have your order
correct, and notify me if I don’t.

Name: Necklace: KeyChain:
Avie F 1
Tammy H 2
Teri E 1 1
Cara H 1
Jen C 1 1
Rozanne W 1
Shaun G 5 Donate4
Katalin 1
Karina C 1
Lorry H 1
Mandi C DevFacto 10 Donate7 10 Donate7
Samer T 1 1
Carly G 1 1
Morgann H 2
Val T 2
Mandi R 1
Erin K 1
Connie T 4 3 Donate1
Angela R 1
Zoey O 1 1
Cindy R 1
Sarah 1 1
Jenn K 1 4
Jodelene W 1
Missy H 1
Kim J
1 4
Jill L 1
Lauren M 1
Penny H 1 Donate1
Alvina B 1
Barb K 1 1
Marianne B 1
Monica D 2
Angela R 1 1
Dayna 1
Tracy H 1
Us 1 2
Evelyne A 1
Heather C 1
Pam D 1
Cliff R 1
Robyn K 1
Vera R 1 Donate1 1
Konami M. 2 Donate2
41 57
Total 98

Only 22 more to go to change the life of another
family! I’m so excited! Tammy, Morgann, and Samer I don’t
have your address will you please send it to me?
erron.anderson(at)gmail.com Monica, shall I send yours
overseas?

For those of you who helped with Elijah’s iPad fundraiser.  Here’s an update on your orders. Emails were sent out if I had your email address. All recipients were BCC’d, so it may have gone to your junk folder.

The order was sent to the puzzling piece January 13th.  This may seem like a long wait for those of you who sent your money electronically, however a little over half our orders where paid by cheque .  Unfortunately we were not in a position to float the order while waiting for the cheques to arrive via Canada Post.  Once we painfully waited for the mail to arrive, and we had most of the cheques I sent in our order right away.  The puzzling piece, though running out of jewelry after such a successful program, filled our order and sent the iPad and jewelry the next day.  You can track the parcel through USPS with this tracking number cv 014 603 346 us.  It is currently in customs.  Once I have your pieces here I will separate the order, address envelopes, and send them to you immediately.  I’m as excited as you are to receive my package, hopefully it won’t be too much longer.  I anticipate early next week it will arrive, though I won’t be surprise if it arrives late next week, or early in the next.

As ever with much appreciation of your support,

Erron

PS we are 27 pieces from providing a second family with an iPad.  To help see this post



Yep That Confirms It…

Since my last posts, which was the busiest my site has been, I’ve acquired a few new subscriptions.  I have to say that leaves me feeling a bit more pressured to post more regularly.  As it is, I post about about once a week, often a bit less than that, and I imagine that won’t change too much.  Your inbox won’t be filling up with posts.  So probably this isn’t the best time to tell you something about me that I’m cautious to tell you, because it’s something that evokes a certain type of judgment, but it’s what I got, so here it goes.  Hopefully you won’t hit the unsubscribe button too quickly.

I love good food, I love food that’s good for you, and I’m passionate about good food that’s good for you.  As of late I’ve given up my morning coffee in favor of green smoothies.  I am late to the craze, but I love them.  Kyle bought me an awesome blender, that we’ve had our eye on for over a year. With some saving, and buying refurbished instead of new, Kyle bought me a Blendtec for Christmas.  Wowzers, does it ever make a smooth drink!  Typically my morning smoothie will have Kefir, 1/4 of a cabbage, two big handfuls of spring mix or spinach, one large floret of broccoli, Cacao nibs, a 1/2 a banana, some berries and chia seeds.  Because of the cacao it still has the caffeine kick, and it tastes surprisingly yummy, mostly the banana and the chocolate shine through.  Slowly over the past two years we’ve been making better and better food choices, I would say at this point we could be accused of being food snobs, and we wouldn’t have much of a defense.

A few years ago I was starting to get quite sick, I won’t give you all the crappy details, but it seemed that some foods, particularly wheat, were giving me quite the upset tummy.  Elijah now seems to have the same problem, though I think we ought to have him tested for a true allergy, because when he sneaks wheaty food he gets a rash up the backs of his legs.  I was tested for celiac, and thankfully the test came back negative.  Since taking up the green smoothies, likely because I’m getting a whole lot more fiber, probiotics from the kefir, and I’m guessing the extra nutrients don’t hurt, I’ve been feeling better then ever.

So, am I worried about being judged because I drink a green breakfast?  No. Here it is.

The other day while in the car listening to DNTO on the CBC I heard the host talking about her boyfriend, who has very serious aversions to food because of Ulcerative Colitis, talking about sway testing.  Ultimately sway testing wasn’t accurate enough for the hosts boyfriend, so they went on the SCD diet. **note this is not an endorsement of this particular site, it just happens to be the first one I found that describes sway testing well, this is the only page I’ve read on this site.

It got me thinking though, maybe I’ll start sway testing food to see what foods may potentially upset me.   I’ve experienced a type of this kind testing when I was seeing an acupuncturist.  He would put an herb on my chest and while I was laying down he would try to push my legs together.  It was fascinating how for some herbs I could not resist my legs slapping together no matter how hard I tried (it was not good for me), and for others it was easy (the right herb to try). When I told Kyle I was going to start sway testing food he was sure I had gone absolutely bonkers.

“That is something we are going have to disagree on” he said,” no way it works.”

When I asked him about the same testing he had gone through at the acupuncturist, he’s decided it was a trick. I think otherwise.  I think (so this is where you might start thinking I’m crazy, if you haven’t already) that if we are capable of putting off energy, then other things likely do too, and some energy reacts positively with you and other energy negatively.  The idea is that you take the food hold it to your chest close your eyes and focus on it, asking is this good for me,  if it is, you’ll sway forward, if you shouldn’t eat it, you’ll sway back.  I know that reading this is likely making some people I know cringe the way Kyle has been, but I bet most of you try it.

I’ve been sway testing, this and that, to see what I should eat today.  I could see Kyle catching glances at me when I would open my eyes with a smile of amusement, and a head shaking that indicates that he really does think I’m plum nuts, but I’m going to give it a shot, it’s not going to hurt anyone if I stop eating olives because I test negatively to it.  And after some time if  I feel like it’s changed nothing I’ll stop.  But what if it works, and I feel better because of it?  That’s what has me decided to give it a go. Now I wouldn’t test for other people as the link above suggests you may be able to do, and I ABSOLUTELY would NOT rely on it for prescription drugs, but for me, a personal experiment is just the kind of kooky I am.

Speechless

Those of you who know me, know I love to talk, get me on the phone and you’ll have to end the conversation because I won’t.  Gabbity gab gab. But right now I’m in front of my keyboard and I don’t know what to write.  I’m talking about the success of the iPad fundraiser from this post:

The post where I ask you for 20 bucks (don’t worry you get something)

I’ve said it to a few of you, Thank you seems much too small.  Yesterday we hit 60 people committed to purchase  in our fundraiser to earn an iPad for our family, Elijah specifically.

I almost didn’t do this challenge, I really didn’t. I wrote the blog post Sunday night and didn’t publish until Monday morning.  I didn’t want to get close and have to start begging people to please pony up.  It’s not my style.  But to hit 60 in one day?  Wow, no… WOW!  It is a testament to how wonderful nature of all those who purchased for our cause, but also to all those who RT’d, reposted, and blogged about our campaign.  I would say about 1/3 of the people in the comments in the post below I don’t know.  In fact, I got an email from someone saying: I saw this on Mike Hoovers Facebook.  I have no idea who Mike Hoover is, but some looking indicates that the girl buying is the friend, of a friend, of an acquaintance.  Next thing I know Kevin Bacon is going to be placing an order 😉  Mike thanks for reposting a stranger’s story.

I spoke with Melissa (from The Puzzling Piece) on the phone today and wowzers that woman has energy!  She is lovely when I told her we are at about 65 she say’s great you’re going for the second one!  What?  We can get a second one?!?  She says she’ll do it!  How amazing is that?  So if you haven’t purchased because you’ve seen that we have enough, don’t stop!  Please don’t stop.  If we can make 120 that second iPad is destined not for our house, but to another family.  You’ve been so good to me, I would love the opportunity to surprise a family in my community with this amazing gift.  I know a family with 3(!) kids on the spectrum, one completely non verbal, that I would love to bless.   And if they already have an iPad, I can think of two other autism families that I would love to surprise as well.  Keep me busy sending payment requests and reconciling my spread sheet!

My Blog had it’s busiest day yesterday with about 370 hits. And we are the first family to complete the requirements for an iPad!  The first ones!  Hey it doesn’t hurt that The Puzzling Piece is actually offering something genuinely gorgeous. Autism may affect 1 in 110 but your selfless acts have proven it can effect 1 in 1.  Those who give without thinking of themselves are the truly blessed.

By my count 27, 33 42 43 people have astounded us with orders for 63, 75 90 96  necklaces and keychains.

We’ve received payment for 11, 45, 49, 92 with many cheques in the mail I’m sure. Thank-you Jodelene, Sammer, Jenn, Zoey, Rozanne, DevFacto, Auntie Val, Jenn, Kim, Jill, Marianne, Barb, Angela, Tammy,Angela Ry,Evelyne,Tracy,Dayna,Evelyn, Penny, Alvina, Cindy, Shaun and Lindsay, Carly, Terri, Avie,  Jen C, Kaitlin, Morgann, Erin, Heather,Vera, Mom, Pam, Sarah, Lauren, Monica, Dayna, Tracy, Evelyn, Blaine, Cliff, Robyn and Cara for following through with your commitment.   I’m confident everyone will,and we are so lucky! (look for your name here when we receive your money)

Special thanks to Mandi and David of DevFacto for being our largest contributor, to Kelly of  Pulp Studios for sending the most people our way, and to Shaun and Lindsay of  Outright Life for doing the most promoting!

I will keep you all posted as to when I place the order, when it arrives, and when I ship it to you.

And though it’s not enough, Thank you again.  Please keep passing this forward, remember RT, repost, press this, email or write your own blog!

To help shore up that second ipad please see this post, as of January 23 we’re only 24 shy of changing another little ones life with the use of an iPad.