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

Posts tagged ‘Death’

Killing Them Softly

When I’m telling people that Kate died,  I never say she passed away.  Actually I kind of cringe at that expression, passed away to where, passed what?  I don’t begrudge others from using it to describe the death of their loved ones, people should say what they feel comfortable saying.  For me its a little too soft, too pretty, too acceptable.   In fact part of me likes the shock that comes from saying that our baby is dead, if I can be perfectly honest.  It’s a particularly difficult chapter in my life, and it shouldn’t be easy to say.  In fact the two most difficult things for me have been Kate’s death, and Elijah’s autism.

Autism isn’t the tragedy that Kate’s death was, in fact it’s hard to call Autism a tragedy, but for many of us, Autism means worrying about tragedy.

Part of what makes Autism so difficult to deal with is the tendency that many kids with autism have to wander.  To make matters worse a lot of kids with Autism seem to be missing the ability to feel fear, or sense danger.  I can think of two incidences with Elijah that makes my blood stop.

One day while putting his baby sister upstairs to bed, Elijah undid three locks on the front door and let himself out, naked.  Thankfully it was summer, not winter.  We lived in Chicago, at an intersection of two very busy roads, Western Ave and 119 street.  When I came downstairs the first thing I noticed was he was missing, and the door was open.  The police were called, and I frantically searched the area asking passer by’s if they had seen him.  The truth was, since he loved cars I feared he was already dead.  Traffic doesn’t stop in Chicago, crossing the street is a ridiculous danger.   To make a long story short he was found safe, and sound, and I was never the same.

A few months later while on a trip to see a Floortime therapist, we were taking Ky’s car instead of the van.  I strapped Elijah into to his booster seat, both age and weight appropriate for him.  A half an hour later while going 70 miles/110km an hour down I-94, Elijah undid his belt, and opened the back door.  Luckily the force of our speed made opening the door difficult, and it shut again.  I pulled over, yelled at him, called Kyle, cried, and belted him back in, and always used the 5 point harness seat.  Death was too close again.

When we lost him in line at Disneyworld while waiting to see one of the 3D movies, Kyle didn’t hesitate for a second to pop up on a rail, so he stood above the crowd, and shouted at the top of his LUNGS: ” Attention, my son with Autism is missing, he has a blue shirt on”, and then gave a description.  In a matter of a only a moment he managed to get to the other side of  a packed lobby of a few hundred people without any concern that he couldn’t see his parents.  A few moments more he may have found an exit, and few more and who knows.

During these scares Elijah didn’t speak more than a handful of words.  If kids are found wandering and are unable to tell an adult who they are, or where they live, they are more likely to be abandoned by that adult, because they are unable to help immediately.  The older the kid, the more likely this is, in fact a wandering 16 year old isn’t likely to be approached with help at all.

A while ago I wrote about James Delory who died  of hypothermia after wandering from his Nova Scotia home.

Adam Benhamma

Today I am a wreck over beautiful Adam Benhamma, Adam wandered away from the people he was with.  The “fading hope” has me feeling helpless.  As I sit here typing this blog out, his family is worrying about whether they will be arranging a funeral tomorrow.  As a mother I’m heart broken for them, as a mother with a son with autism I can imagine it could be me, as a mother who’s buried a child, I hope above fading hope that he’ll be found.  Adams Story

More and more we hear stories of kids with Autism dying due to wandering.  With our collective US and Canadian governments refusing to see Autism as an epidemic, even with a a rate of 1 in 110, and as high as 1 in 65 in some pockets, we should all get ready for more autism deaths.  Autism is killing our children by robbing them of a sense of danger.  Children are dying from incidents that stem from their Autism.   And just like babies dying, there is no gentle way to say that.

Part of me wonders if the outrage isn’t as strong as it ought to be, because it’s not normal kids dying.  These are the weirdos, the kids who bang their heads, the ones who don’t talk, the ones who scream, who hit and bite, the ones who spin in circles, and flap their hands.  The ones whose mothers and fathers love them dearly, whose bothers and sisters don’t care that he/she isn’t the same as other kids, the ones who have a special bond with the family pet, because animals don’t judge, the ones who love back in unconventional ways. We should all be outraged.

Elijah is getting better, he bolts less often, we can keep him engaged more these days, and he’s learning to play with his sisters, so he stays near more often now.  I can look away for a second, and it’s okay.  But when I can’t find him, my heart goes straight back to that place that has me wondering if we’d bury him beside his sister, and what we’d write for his epitaph.

So what can you do?  Other than donating money to an Autism charity?

Parents of kids with Autism are often tired, its an extreme sort of parenting.  We feel like we don’t fit.  It can be hard for us to make other mommy and daddy  friends, because parents would rather their kids didn’t play with ours.    So here’s some of my suggestions of what you can do.

If you are good friends, offer to babysit in their home, so mom can have a nap.  But don’t expect a yes until you really learn what it means to babysit a kid with autism, take the time to learn what the dangers are, are they likely to bolt, drink/eat things they shouldn’t,  and what kind of attention they need.  Find out what sets him/ her off, find out how to calm them, what they can and/or will eat, and how they communicate.  Plan to spend some time with them beforehand, so the he/she trusts you.  Don’t be offended if we come down from our “nap” several times, it’s not that we don’t trust you, it’s just that we need to know our kid is okay, shooing us away is not the answer.  Know that that even the shortest break is appreciated, and if you keep offering help, and you seem to truly be able to handle our kid, we really will sleep eventually.  The reason most of us say no to your offers to help is because we know you can’t handle our kid, we don’t mean that condescendingly, we know that some days it’s almost too much for us, and we’ve eased into it from infancy, it’s important to us that you know what you’re getting into.

Short of that, you should know most of us have been shunned at moms groups, gym class, ballet etc. if not outright kicked out.  Befriend the mom with the odd kid in art class, be friendly, be kind, be open, and check your judgement of what kind of kid and/or type of parents they must be at the door.  Over time maybe invite us over for a playdate?? When that playdate ends with the kids not playing together, toys played with in other ways than their intended use, and with shrieking and/or complete silence, and with the mom hovering over the kids, invite them to come over again!

Short of that, make a meal, shovel a sidewalk, mow a lawn, or volunteer with an organization that makes a positive impact to individuals with Autism.

Short of that, donate your internet space on Facebook, Twitter, or other social media to promote Autism Awareness, Autism reform in your State or Province, or to support a family who is struggling (make sure they are okay with you sharing their struggle).  This month it’s easy, April is Autism Awareness month.

Short of that, when one of ours kids goes missing in your community, help us find him or her.

And today pray for Adam, Adam’s family, and for all families dealing with Autism.   Pray often for fewer deaths, more acceptance, and better programs to help individuals with autism make meaningful and positive contributions to an more inclusive society.

“fading hope” has me feeling helpless.  As I sit here typing this blog out, his family is worring about weather they will be arranging a funeral, tomorrow.  As a mother I’m heart broken for them, as a mother with a son with autism I can imagine it could be me, as a mother who’s buried a child, I hope above fading hope that he’ll be found.  Adams Story
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He Bit My Face: Losing Touch With God

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.

Death and Christmas

I’ve been thinking about this post again, I could write something similar and new, but it would just be regurgitation.  This is the first Christmas without my Babby, and while I likely feel the loss less than many in my family, I miss her.  There will be no cheery Christmas phone call this year.  It makes me very sad that we were here in Saskatchewan last year and didn’t go for Christmas.  Why?  We weren’t invited, I didn’t want to be imposing house guests, my Babby was worn out and my kids are BUSY.  There are a million excuses and none of them really answer the question, because they are all full of their own type of holes.  We can’t change the past.

As we live on the holidays will likely continue to have more people we miss.  That’s part of the inevitability of life, we all die.  Some before they should, some after a long life, some after injury, sickness or disease where death itself is a small mercy, but they all leave an emptiness behind.

I hope your Christmas is merry, and happy, ours this year promises to be.  Petra checks the calendar everyday and announces how many more days.  Elijah keeps telling us “Don’t forget to buy me a present”.  We have treasured family coming to visit, and there are presents a plenty for under the tree.  This year the girls are getting Princess American Girl type dolls.  Aurora for Tal, and Ariel for Petra (or maybe Tiana she keeps changing her mind, we have both for her, but one is going back), and there’s another Tiana doll in the closet for Kate.  Every year we buy something that we would have bought for her this Christmas and give it to charity.  It’s a nice way to include her in our buying, and it will make some little girl very happy, but the sorrow in thinking about the joy three princesses would have brought pokes through sometimes.   Still our kids have more than they need, and giving to a family with less is a great lesson for them, and that friends, is one more way Katie has blessed our family.

Merry Christmas to you!

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First Posted Dec 18th 2009

Katie’s Christmas Legacy

Seems a few people I know are experiencing grief in a big way this season, it’s the first holiday after the death of their loved one.  I wish there was some way for me to bear it for them, because it really is so hard.  The world is happy, full of mirth, joy, and thanksgiving.  People are down right jolly.  When the one you love isn’t here, the contrasting darkness of your life feels so bleak, and almost shameful.  People still ask “Are you having a good Christmas?”  “Has Santa been good to you?”  “Did you get what you want this year?”  And the answer to all these questions is no.  Yes, even in sadness and in the mist of grief there are moments of light and joy, but they are breaks in the darkness, not lasting light.  A good Christmas would be with all those we love, that they would be alive, and celebrating with us.  That first Christmas after death  can be downright awkward.  Stuff your feelings, pretend to be happy, so you don’t bring others down.  Perhaps what those of us who can feel the joy in the season should be doing is lifting others up, not in a “Come onnn, cheer up!!” sort of way, but in an understanding ” I know this must be hard for you, but I love you” sort of way

This is our fifth Christmas without Katie, and still it’s hard.  Yesterday she was on my mind in a big way.  It’s not the same debilitating I can’t get off the couch, or why don’t we have more Kleenex sort of day anymore.  Having other kids now helps tremendously, they make you find joy.  But there was an emptiness in our house yesterday that doesn’t usually permeate the forefront of my thought.  I think knowing that the Christmas service in Edmonton for parents who have lost a baby was yesterday, didn’t help.  I had hoped that in being close I would make it there this year.  It really is a nice way to remember, how much is lost to some parents each year.  Kyle has been witting his exam, counseling students, and attending meetings about some ridiculous work bureaucracy, plus we had just made a trip to Edmonton last week, and therefore we just couldn’t swing it.

Witnessing, or knowing about new grief among my friends this season is hard.  It gets better, but constantly being told that that future is what we should hold on to, sucks, because the right now is miserable.  I think you have a right to be miserable if you need to, a big hole has been ripped open in your life, and pretending it’s not there does nothing to help repair it.  I wish I could find the quote, but I once read a quote that said essentially this.  God could mend your heart quickly with large lose stitches, but it would just tear open again, so instead He works slowly with small tight stitches, it hurts more and takes longer, but when He is finished it is lasting work.  You’ll always bear a scar, but your heart will hold love, hope and joy again.

So my friends, Lauren and Rob, Janine, and Jenn, and those of you who have lost someone you love this year, go ahead and have a hard Christmas, be lonely for the ones you love, cherish the breaks of light and feel joy where you can, but be true to how you feel, so that your stitches may be lasting too.  This scared heart is praying for you, and perhaps part of Katie’s legacy is understanding that sometimes you just need to grieve.