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

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

Comments on: "Killing Them Softly" (7)

  1. I wish I had words for the anger, pain, and sadness. My heart goes out to Adam’s family (Please post an update if he’s found) And to you with your struggles and your achievements. People do not understand…. and it’s a shame. {{{HUGS}}}


  2. Erron, I ❤ you as always. A lovely post. I, too, have often felt the need to shock a little when talking about my dead baby. And with the number of parents I know with autistic kids I soooooo get what they're worried about. Keep it up, lady! You're a light in this world.

  3. I just replied to a comment on another blog last night in which the lady claimed autism wasn’t deadly. Like hell it isn’t. We have to be vigilant at all times to keep my son safe. Brady loves when it’s freezing cold outside. He would love to wander off in the winter. We can’t let him out of our sight. It’s a tough way to live. And it’s so true about not trusting people to watch them. You trust their love and intentions but our children can be tricky and difficult. It takes time to feel safe leaving them with someone. And the truth is we really really need a break. I’d love a date with my husband.

  4. …I wish I lived closer to you guys!

  5. I’m a sister to a brother with Autism, He is 43 years old now and he is still the little kid I knew growing up. I’m not belittleing him I’m being real. Sometimes years don’t make things all that different…for them or for us, their family. We just know them and the unique quirks and simple joys and random un-simple outbursts. The challenge and I guess also a blessing is that my brother is deaf and without speach and autistic and more and he’s funny and smart and loves dancing and apples and flicking paper and straws and is stubborn beyond the highest heavens yet knows full well how to get any one of us to do his bidding..see smart. And then there is the mindless running away, and walking swiftly while his head and eyes are down to the ground and he can’t hear you yell out of fear as cars are just feet away from him. But since he is also competitive, he thinks he has to win and arrive first even though he doesn’t know where the finish line is and he’s prideful and stubborn and autistic so every walk is realy a question of, what is it that i may be required to do to keep him walking calmly(not to stike his competeive nature), and not to upset him for walking to close to far , i wore a bad colour today,. Will I have to stop trafic? Will he find this funny and do it again because my facial response stikes him somehow or not at all.
    I’m 38, I’m his 1st youger sister, We found him in the revine, we’ve found him on a random train in England, we’ve found him hiding behind trees and cars, we’ve also found him being beratted by strangers because he walked on their grass and stood there for an hour just swaying back and forth.
    I know the fear, and I know the fear others feel towards our special brothers and sisters.I know I deveolped a warrior in me at 5 when the neighbour kids were teasing my big brother(10).And now my warrior is even bigger. But I’m still his little sister so I can make him dance and enforce a hug onto him while he hides his head a bit embaressed. Autism is big it’s confusing,and everyone has to be on their toes and goodness knows we need to laugh while be watchfull/ mindful for the next random behaviour. Love them,Love you self, see the plentiful gifts and yes find great support…be great support, but mostly be kind.

  6. You’re right, people do not understand. Thanks to your post, I will now recognize a wanderer when I see one and I will help. Your words are creating a village that can help raise all of our children. Thank you!

  7. Rebecca’s comment made me cry a bit. I’m a sister to a brother with autism as well; he’s nearly 16-years-old and I’m the elder one. He doesn’t talk, so if he did wander off he wouldn’t be able to tell anyone he’s lost or where he lives or anything.
    My mother has refused to take a break since my brother was born…I’m not kidding, she hasn’t had a single day off or ANYTHING to be away from him. She’s too scared and too protective to leave him alone. Fingers crossed, I’m sending her off for a while during which time I’ll be staying at home with my brother.
    Thanks for posting and sharing.

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