Here's How It Can Happen

I follow many Autism community blogs, websites, organizations and facebook pages.  Needless to say, my newsfeed started filling up when the story first broke about Jayliel Batista.  Jayliel is a 5 year old that wandered away from a family member's  home on New Year's Eve.  He wasn't wearing a coat, nor did he have on any shoes.

A search party was sent out for him, the police were notified, and search dogs were summoned.  The entire community looked for him.  They were told he may be frightened and would run if he should be called by name.  They searched in nooks and crannies.  Bushes, brush areas, people's yards...and as each minute passed.....the light on Jayliel's story grew dimmer and dimmer.

They searched for 36 hours.  And they did find him, about a 1/4 mile from the relative's home.   But in fact Jayliel's light had gone out...and he was found dead 8 feet at the edge of a canal.

A canal.

Every statistic out there speaks to the fact that what kills the majority of Autistic kids....is drowning. Fountains, ponds, lakes, rivers, ditches....and now, canals.

My frustration immediately was with the people searching for him.  Why didn't they check the canal first?  Did they not think he could have gotten that far?  A scared human, dog, cat, etc. can run pretty far, pretty quickly.  Why do we not have enough awareness that the water is the killer?  How have we missed this, again?

But I had to step back from that.  Was I in the search party?  No, I was not.  So I don't know how they set up the grid.  I have no clue how the search party was deployed.  Maybe they did search that area.  I just simply don't know.  And because I don't know....I have no right to sit in judgement of anyone.

But here's what has bugged me the most.  And quite frankly, always bugs me when one of these stories comes to light.   And for some perspective, it's about every week or 2 that my feed is filled with missing...soon to be found drowned kids.  It's getting to be so disheartening.  But I digress.

What's really got me honked is how much blame is being tossed on the parents...

"He was 5.  This is parents not paying attention. They were probably on their cell phone."

" I don't let my daughter out of my sight.  EVER!  How could these parents just not know?  They are negligent!"

" Did they not have a safety plan?  They were at someone else's house.  They should have had a plan.  I'm sorry, this is a poor parenting issue."

....and on and on the trolls go.

And these are parents of autistic kids.  These are people that live the same world that Jayliel's parents live in on a daily basis.  These people are supposed to be the "support system."

Pfffft

Just like I know nothing about that search party plan.  No one knows what happened at the relative's house that night.  Maybe Mom had JUST checked on him and she was living in that 5 minutes of comfort that all was well.  It's only a short time, because you know....you are going to have to check on him again in 5 minutes.   Maybe he was asleep, and she believed he still was.  My point is...my God, none of us were there.  And none of us has the right to stand in judgement.

I'm going to share my stories about Nea's wandering.  I'm not going to lie, I'm a bit nervous about sharing because it makes me feel like such a shitty parent.  And yes, I am aware that every parent has "that moment" that has happened to them before.  But there is a LOT of persecution in the Autism community regarding this issue.

One of those situations happened just today.  Today.  Today after a 5 year old boy was found dead.

Here's how it can happen.....

Nea was 15 months  and we were playing in the living room.  It was a beautiful spring day and our big door was open, with the screen door letting in the nice warm air.  I yelled to her Papa, "I'm running upstairs a sec to go to the bathroom."  He responded, "Okay!"

And so, as most things happen....I went to the bathroom, but then ended up folding some towels while I was there.  I heard a knock at the door and headed downstairs to see who it could be.  I heard Jon in the kitchen and starting to walk to the front door.

And there was a complete stranger standing on the porch holding our daughter.

What.  The.  HELL!?!?!

She smiled a big sweet smile and reached her arms out to me..."Mama! Hi!"

When I went upstairs...Papa assumed that I was taking Nea with me.  I assumed that he would start keeping an eye on her.  Neither one of us was very clear.

Thankfully that day a kind neighbor had seen us playing outside earlier in the day and knew where she lived.  He found her 1/2 down the block, on the other side of the street.

15 months....1/2 block, crossed the street.  I couldn't breathe for a few minutes.

When Nea was 3 I caught her heading out the side door.  I screamed so loud that she sat on the floor where she was and started to cry.  "I outside."

That prompted me to order The Big Red Safety Box.  A free kit that includes "Stop signs" to put on the doors, a family emergency pack, a form for first responders (so time is not wasted getting a ton of information about the child), etc.  We put more high locks on our doors after that day too.  It took me awhile to breathe after that.

Today we were late for church.  As we pulled into the parking lot, Nea squealed..."Look Mama!  Look at the water!!"
There's a pond right in front of our church.  It rises and falls like any body of water based on our precipitation.  Today, it was looking especially beautiful as it had a fresh, sparkly sheet of ice on it.

"Ohh!  Yes, that's pretty!"

We rushed into church.  Because we were so late, the children were filing out of church and headed to their education classrooms.  She LOVES her "church school" and filed right in line with the kiddos.  She practically ran to the back of the building!  I watched her take a left to head to her classroom.  I grabbed  a cup of coffee and slipped into a seat for the rest of the service.

After church was over, I headed to Nea's classroom.  The kids were still working and the adults were moving around the table helping them.  I didn't want to interrupt, so I peeked in the window.  I didn't see Nea, so I popped my head in....

"Is she in the bathroom?"

The teacher looked at me with shock on her face...."She's not in here...she's not been back here at all."

Oh my God!  Oh my God!!  She's had an entire 40 minutes!!  She's 40 minutes ahead of me.

THE POND!!!!!!!

I dropped my stuff and headed for the door.

Oh NO! NO! NO!

It's so cold.

The ice is not that thick.....

Why didn't I take her in the room?

Do I see her coat?  Was it still on her?  Did she hand it to me?

It's so cold!

The water...the beautiful water...

My God...please let this be a nightmare!!

10 seconds.  It took 10 seconds for those phrases to pass through my head.

The nursery is on the way out the door, and on a a gut, I popped my head in there.

There she was, playing in the corner.

I leaned against the wall to catch my breath and try to contain myself.   They told me she came in there fairly early at the start of the hour.  The girls in there know her, they know she gets overwhelmed with sounds/sights sometimes and they assumed that's what happened.  They were happy to let her hang out with them.  They assumed (and rightly so) that I sent her that direction.
Everyone was supportive and apologetic, but there was no need to be.  I should have handed her off myself....adult to adult.

Thankfully, I only had to learn a tough lesson today.  I didn't have to start searching for my 5 year old in a semi-frozen pond.

It can happen.  Over half of children with Autism are prone to wandering.  A lack of awareness, not a sense of danger...etc...the risk is just so high.

So what do we do as a community?  There's a blog I follow that is called Autism Daddy.  He's a great writer who has done a perfect job of outlining what needs to happen-there's no need for me reinvent the wheel.  I think he has excellent suggestions.  Please take a moment to read them.

If you are in the Autism community...please, let's not tear each other down and judge during these horrific instances.

If you are not in the Autism community...please, help us.  Helps us raise awareness in your community, educate yourself, understand the issue.

It can happen.....

Flowers in November

It's not even 11:00 am, I've only had 1 cup of chai tea, and my day has been one of the shittiest that I can remember in a long while.  (Trigger warning:  I have no idea what I'm about to spew from my mouth as I'm writing while everything is still fresh....but very raw in my head).

When we arrived to the rehab department for Nea's OT appointment, the waiting room was pretty full.  Not too surprising since all the 9:00 a.m. appointments were gathered.  Nea ran to the fish tank and began her usual ritual of "Look Mama! Fish!  Look, a fish!" as I signed her in and gave her my usual reply "Yes, I see!".  Another child was viewing the fish tank and seemed to pick up on Nea's excited energy.  The girl was jumping up and down about 4 breaths from Nea's face and yelling "fish! fish!"  I motioned to Nea to come to me so I could take off her hat and jacket.  The girl, in a way to try to be helpful, snatched it off her head and brought it over to me gleefully.  My girl was crumbling by the second and I couldn't make it stop.  Nea ended up cornering herself against the fish tank and the wall yelling back like a dinosaur.

Bad sign.

What that little girl didn't know is that is Nea falling back to the only defense she has when she feels threatened.   Yelling loudly with a growl undertone is the message, "I am very uncomfortable and I don't know how to stop you!"   She seems to be in "flight or fight" and was ready to bolt.  Thankfully her OT came to get her.  As I unzipped Nea's jacket and helped her out of it, I whispered to the therapist, "The last 3 minutes have been really bad ones."  She scooped Nea up and off they went to the rehab gym.

I spent a lovely hour in the waiting room reading on my Kindle (my newest, fun toy) and sipping my green tea chai.  24oz, no less.  Apparently I had an unconscious tug to get in a relaxed state of mind because I was about to face an epic meltdown.  But for that blissful, unaware hour I was transported to the story taking place in Nova Scotia.

When the OT brought Nea back to the waiting room, she seemed to be in a relatively good mood.  She greeted me with a hug and went over to play with the books as the therapists and I chatted.  Nea had done well in her session.  She listened to direction, she focused on her activity and she was verbal for the majority of the session.  When the therapist left, I told Nea it was time to go and she simply responded, "No Mama, I can't."  That phrase is usually an indicator that she doesn't want to do something, and it's precognition thought of  "I can't handle it right now."

So I waited. I let her explore a couple other books and read for 10 more minutes.  Finally she said, "Mama, you have paci's in purse?"  Doesn't every Mom?   I told her yes, and that she needed to come get them AND it was time to go.  I patted myself on the back for giving her enough time, some space to gather her strength and move her on out the door.

When the door opened she flew out and around the corner.  Again, a ritual of hers.  After the run down the gallery hall she stops at the bead-table to play for 5 minutes before we actually go out the door.

Ooops, the bead table wasn't there.

The hospital is hosting a Radiothon to raise money for children's services and the event takes place in the lobby/gallery.  (Now you must know, it didn't hit me until the drive home what this really, actually meant.)

Nea was bouncing and bounding all over the lobby.  She looked like the ball in a pinball machine.  I kept trying to coax her to me with oh so helpful phrases like, "Come on, time to go" and "Poppa is waiting" and "You have school today."  I could tell by the look on her face that she wasn't really processing and essentially I had lost any hope of connecting with her.  When she would come near me I would grab on to her and she wriggled, screamed and starting hitting, "Let me go! Let me go! Let me go!"  So I waited.  Again.  I let her ping around the lobby for awhile until it seemed like she was together enough that I could try again.

No way did she want her jacket and hat, but she agreed to hold my hand.  We were almost to the door when it hit her full on.  I could almost feel it as she collapsed to the ground.  Screaming.  Yelling.  Head banging.  More yelling.  The dinosaur yell.  The screaming.  She kept yelling "No! I can't!  No! No!"   It went on and on and on and on.   Most people ignored me, some rolled their eyes at her.  I decided that personal space be damned, I was going to have to save her.

I scooped her up and threw her over my shoulder in a fireman carry.  And with that, I opened the Wrath of Hell.

She had been violated.  She no longer had choice.  She had been picked up, man-handled and she was spitting venom.  Kicking, screaming, yelling and crying.  It was the longest 2 minute walk to the benches of my life.

I hoped the fresh air might help.  Lord knows she was using her lungs well enough, and my hope was that they would fill with new, clean air to help get her grounded.  I carried her to a bench that's tucked away in the corner.  She wanted nothing to do with me.  I held her tightly, squeezed and sang her favorite calming lullaby.   But she pushed me away and laid down on the bench.  For a solid 5 minutes she laid there as her brain tried to find calm and her body shuddered constantly.

And I sat there and cried for her.  She had no tears left.  She had no more anger or frustration and certainly not words that could be given.   We sat in silence and just tried to .....be.

She finally sat up, allowed me to put on her jacket and hat and we walked towards the parking ramp.  There are about 15 metal poles between our spot on the bench and the road that goes to the ramp.  She had to "clink" every single one of them as we walked by.  If she were home, I imagined she would have been lining up cars or trains to try and get order back in her life.

It took us a long while to get to the road.  She stopped along the way and threw herself to the ground on her knees.  Once we reached the sidewalk, just on the other side of the road she sat on the railing overlooking the drive below.  Okay, girl-child, we really need to start moving....we were 40 minutes trying to get out the door and to the car!  I gave her one last, "It's time to go, sweetie" and walked towards her.  She did the one thing I've been dreading her entire life.....

She darted in the middle of the road right in front of a car.

My heart skipped a beat.  No, forget that.  I died right there.

Thankfully the car stopped and I grabbed her to the sidewalk.

My patience was whisper thin at this point.  I had remained Zen like for a pretty long time which I would like to give myself 300 bonus points for maintaining.  But that last event, was the end.

I had her by the wrist and we headed for the car.  Again with the screaming, and the kicking and the crying and the all out meltdown.  I literally dragged her on her butt the entire way to the car.  I kept saying, "I know this is hard.  I know you're having a bad day.  I'm trying to help you. I really am."  It wasn't for her benefit, but rather for the crowd that was starting to assemble.   And, I was trying to talk myself into as well.

We got to the car, I buckled her in and felt so much relief.  FINALLY she was strapped in a car seat, safe and under control.  I moved to the driver's seat, got in, laid my head on the steering wheel and sobbed.

I called Poppa as soon as we were on the road to tell him, "You are about to get 2 girls who are a tangled, fragile mess." He asked what happened and I told him the story.  "Come home, and we'll get it all together.  Don't worry."

Did you ever see the movie Ice Castles?  Remember that scene at the end?  For those that don't know it's a movie about a figure skater who goes blind.  Robbie Benson is her boyfriend and he gets her back to figure skating and they are able to "hide" the fact that she couldn't see.  They practice and practice and she measures out each pace so she doesn't hit the walls as she does some pretty extensive tricks.  She completes her competition skate flawlessly and the crowd cheers.  In appreciation of her beautiful skating, they throw red roses onto the ice.  Of course she doesn't see them and trips over each and every one...falling and flailing all over the place.    Robbie comes out to the ice and says to her, "We forgot about the flowers."

And that's what I realized on the drive home talking to Poppa.  That lobby looked one way when we walked in....and it looked entirely different when we walked out.  The ritual of playing at the bead table was not there and the place was packed with tables, chairs, computers, phones, people.   It didn't look remotely the same and I would imagine was the start of her unraveling.  I would have done better to go out an entirely different way then a path that she expected to look a specific way.

These are the days when Autism sucks.  These are the days that I can hardly breathe with the overwhelming knowledge that my child suffers so much on the inside and there is absolutely nothing I can do.  It's unnerving and it makes me so damn mad.

I got through today.  I got us home safely.  As we speak, Nea is in a dark, quiet room watching her favorite movie wrapped in her favorite owl blanket.  She's bounced back fairly well.  Me, I need a hot shower and more tea.

I vow to try and never forget the flowers.

In Honor of Mikaela Lynch and Owen Black

This week has been difficult for many of us in the Autism community.  Two precious children were both discovered dead after leaving the safety of home and family.  It's a tragedy that is beyond comprehension.  And unless you live with a child who has tendencies to run or bolt or wander, you have no idea the daily fear that haunts us.  As if that's not bad enough, the outcry that came from those who do not have these experiences about the Lynch's poor parenting skills is even further beyond my comprehension.

A mother lost her child to a horrific accident and some are standing  in judgement of it all?  Ridiculous.  And they should be ashamed.

I'm going to share with you my own experiences which I have been reluctant to do in the past, but I think sharing this information is the right thing to do.  The Lynch's should not be shamed, nor should the Black's for the tragedy that happened to their children.  But if we all don't share our experiences... their stories look "abnormal" when in fact so many of us know how easily it can happen.....

When Nea was 26 months old, she walked out the front door.  Her Poppa and I each thought the other had an eye on her and in a split second she made a decision to leave.  Not only did she walk out the door but she went across the street and down about 4 houses.  When we realized she wasn't in the house, and I was about to call 911, a neighbor was on our front porch with Nea in her arms.

It's easy for people to say, "you should have been watching her more close" and maybe that's true.  If anything would have happened, neither one of us would be able to live with ourselves.  I cannot convey the amount of fear that still makes me weak in the knees when I think about it.

How did it happen?  Mis-communication, sure.  But also, neither one off us were prepared for this sort of thing.  No one discussed this with us.  We didn't realize this was an issue.  We didn't understand that children with Autism are prone to wander.  We had no idea that the number one killer of children with Autism is drowning.

We do now.  We know the things we have to do to keep her safe.  And with all that in mind....we are fully aware that something could still go very wrong.  We plan, we learn from others and we keep vigilant.  And I am also confident that the Lynch's and the Blacks were doing the exact same thing.

If Nea wanders off, she cannot communicate who she is.  If someone should ask her her name, she would never be able to respond.  Hell, the fear factor alone of talking to a stranger who's looking her in the eye would make her shut down.  Even if we were to teach the script to her, she would never be able to express it.  

And water.  What can I say about water.  She gravitates to it.  She actually runs towards it.  Once, my sister caught up with her before she jumped into a pond.

If I were a rich women, the VERY first thing that I would get Nea would be a trained dog.  These dogs are trained to stick close with a child, alert if the child goes out the door, and can be tethered to the child in public places.  These dogs are also trained to track a child if they go missing.

Nea's getting older and stronger.  We have to come up with a new game plan now to continue to keep her as safe as possible.  We just ordered Big Red Safety ToolKit.  We decided to buy it on our own so that other families in need would have a free one available.  Nea's sense of "danger" is about that of a 9 month old child.  Now imagine that same 9 month old child with the power of a 3 year old.  She can open doors, figure out locks, and walk right towards whatever peaks her interest.

If any good can come from these tragedies I hope that is the fact we are raising awareness.  Is there an autistic child in your neighborhood?  Do you have the families contact information if you ever see the child alone?  Do you know the best way to approach the child without frightening them?  Have you reached out to the parents?

The worst part of parenting a child with Autism is the isolation that you sometimes can feel.  Everyone working together in the spirit of community could actually save a life.

My heartfelt prayers of peace to the families of Mikaela Lynch and Owen Black.