Tuesday, April 1, 2014

In the Blink of an Eye

Today we hold a virtual candlelight vigil to remember and respect the lives of autistic children who have died after an elopement.

In remembering these sweet angels I feel it necessary to share my gratitude for an instance that could have turned horribly wrong...adding another angel to the list of lost babies. 

When Ben was two years old he literally made my heart stop for the first time in my life and it’s never quite been the same since. Before he was ever diagnosed with Autism or we even had a concern with behavioral/emotional issues, we trusted he was just like our other children. That he had fear of the unknown and would stick close to home. I learned the hard way that he would forever be our child that we must watch like a hawk. One Sunday evening I was cooking dinner while my husband was working upstairs. Ben was in the living room completely in my line of vision and earshot, watching one of his favorite shows. Our front door was open with our screen door locked, allowing in the warm spring air. Amidst the sounds of cooking and pans clanging, I must have completely missed the sound of the door unlocking and unlatching. After an unknown amount of time…may have been 5 minutes, maybe 10, I called up to the gentleman that dinner was ready and to have the kids come downstairs…including Ben who I assumed had joined his siblings to play. He wasn’t upstairs. He wasn’t downstairs. He left. My heart was in my throat as I threw open the front door instantly yelling his name as I choked back the panic. I called my neighbor to see if he had meandered next door…she was one of his favorite people. No luck but she quickly met us outside where we feverishly began to assign search areas.

The neighborhood was impossible….a ray of homes only 10 feet apart lining both sides of the street capped at both ends with retention ponds. Jesus. I went to the dark place and fast. I ran…shoeless and with my phone down the street to the pond closest to our house. My husband jumped in the car and drove around the neighborhood asking kids if they had seen any sign of him, recruiting small search parties of older children along the way. As I sprinted down the sidewalk, the homes on either side began to resemble an Alfred Hitchcock movie…the street lengthened and my legs began to feel like stone, growing heavier the closer I got to the pond. Flashes of our family on the 5 o’clock news, police canvassing the neighborhood, all flooded my head and finally brought the burning tears to my eyes. How did I lose this baby?? How could I be so careless?

As I reached the pond I saw a large rubber ball floating along the edge…and in that moment a switch was flipped. I looked down at my phone and knew it was time to call the police as I headed toward the water. As I lifted the phone I heard a commotion. I looked back down toward my house and saw a cluster of children screaming undeterminable words, almost dancing in the middle of the street. As I focused between the scurry of neighborhood kids, I saw two chubby bare thighs and I knew. It was him. (God love him, he was in nothing but a thermal shirt, diaper and sandals. At least he put on his shoes.) I don’t know that my sadly out of shape legs could have carried me to him any faster.   I scooped him up as the kids in their excitement followed us all into our home. After thanking and hugging our helpers, the gentleman could see that I was on the verge of losing it and quickly sent them on their way…lest they see me “ugly” cry. Nobody wants that. I didn’t know whether to spank or squeeze him…or both. After I regained my composure I held him tight the rest of the night...and vowed from that point on we would provide an environment that would keep him safe and contained.   I can say that I've tried my best.  And we've had other scares since then.  Because he is fast.  He has no fear.  And I'm human.  We all let our guard down from time to time if only for a moment...and unfortunately that is all it takes.  One moment.  We can't all live in a constant state of emergency preparedness.  But there are tools and resources, such as the Big Red Safety Box, to help us in that effort. 

The Kennedy Krieger Institute reported in a 2011 study that up to 48% of all children with autism will engage in wandering behavior or "elopement," which is defined as the tendency to leav...e a non life threatening space and enter into a potentially dangerous one, and is a rate 4 times higher than their neurotypical siblings.

The Krieger Institute also reported that "35% of families with children who elope report their children are “never” or “rarely" able to communicate their name, address, or phone number by any means."

In 2012, the National Autism Association reported that "accidental drowning accounted for 91% total U.S. deaths reported in children with an ASD ages 14 and younger subsequent to wandering/elopement."

This vigil is being organized to spread awareness of the very real issue of wandering behavior in autistic children and the unspeakable tragedies that can, and have occurred as a result.

Please join us in respectful remembrance of the children who have died.

This the most recent list since 2011 but not entirely comprehensive:

Kaitlin Bacile
Au-Juna Banks-Taylor age 9
Ryan Barrett...
Christian Baucom age 6
Jason Baucom
Adam Benhamama
Owen Black age 7
Aiden Bower age 4
Ashley Brock
Noah Burke
Carolyne Burns
Dena Burns age 6
John Burton Jr. age 7
Colum Canning
Kaymania Catt age 5
Alex Christopher 6/3/2005
Zachary Clark
Jeremiah Conn age 6
Holden Cottingham 2013
Taariq Cross age 7
Christian Dejons
James Delorey
David DeSantiago age 11
Devonte Dye age 5
Tatiana Eiland-Clinton age 3
Devine Farrier
Justin Gore Jr.
Darryl Gosein
Anthony Guerra age 9
Tristian Guffey
Liam Hamilton age 7
Elizabeth Hathaway age 10
Savannah Hauser
Benjy Heil
Jack Hensley
Emily Hope
Drew Howell age 2
Tristin Jeras 7/26/2012
Aiden Johnson
Marquail Johnson age 8
Jackson Kastner age 4
Kesia Kearse
Nathan Kinderdine
Michael Kingsbury age 7
Adlai Kugblenu
Anthony Kuznia age 11
Bernard Latimore
Aiden Lawson age 3
Kieran le Couteur
Erik Lippmann
Alexie Loper age 4
Mikaela Lynch 5/15/2013
Charlie Manley age 16
Savannah Martin 2/20/2011
Donivan Martin age 16
Savannah Martin age 7
Jared McGuire
Mason Medlam
Logan Mitcheltree
Christopher Morrison age 5
Blake Murrell age 4
Alyvia Navarro age 3
Avonte Oquendo age 14
Dominic Overton
Ariana Pivacheck age 9
Evan Reed 2012
Hannah Ross age 7
Blake Ryan 4/19/2011 age 4
Christina Sankey age 29
Luke Selwyn
Nicholas Shaffer age 12
Kaleb Shavers age 6
Kadeem Shillingford age 15
Jonah Smith
Julian Stacey New Zealand
Aaron Steele
Travis Stratton 3/1/2014 age 4
Kaliya Sullivan
Sean Taglione 1/29/2012 age 12
Desmond Thomas
Kristina Vlassenko age 10
Christopher Wakeman age 23
Amarie Walker age 4
Skyler Wayne
Freddie Williams age 13
Davin Williams age 15
NNR age 5 Bradenton, FL
NNR age 11 Stafford, VA
NNR age 12 Houston, TX

Monday, January 20, 2014

When Alone Becomes Lonely

Honor roll!  My boy made the honor roll.  Yep…I’m talking about Ben.  That kid continues to amaze me every single day.  He has succeeded (for the most part) in his general education classroom now for two and a half years.  Of course I’m using grades, incremental improvement on IEP goals and his lack of suspension as my measure of success.

What’s not to love?

He is also continuing to push himself athletically and socially by participating in our youth basketball league.  I’m thankful for this.  He has now tried his hand at baseball, football and basketball…and isn’t half bad at any of them.  He’s already far-surpassed my expectations in that regard.  He has come a long way from sitting silently in the dugout last spring, not speaking to a single teammate, not cheering for the others, simply awaiting his turn to do his thing.  He was very much an individual on that team.  Football came and went and his social skills improved.  He may not have been one to wrestle with the other boys in the grass like a pile of over-stimulated puppies…but he DID practice passing before or after practice with one other kid from time to time.  HUGE growth!   This winter, he chose to join the basketball league.  As is typical for me, I hesitantly encourage and praise him for wanting to participate.  I get the usual stomach ache not knowing what kind of coach he may get…what kind of parents we may see in the stands…what kind of kids he may be paired with.  We were fortunate that he was chosen by a coach we know and like and trust and so far his teammates and the other parents have given no cause for concern for this over-protective momma.


Despite all of these successes, we’ve seen his anxiety grow over the last few months.  It’s hard to watch.  It’s difficult to manage.  And we are doing it on our own.  Up to this point we’ve not made any breakthroughs in getting insurance coverage for therapy.  Instead we’ve done our best to substitute with a daily activities chart, therapeutic horseback-riding, organized sports, anti-anxiety meds…hell, we even broke down and bought a puppy.  Something I never thought I would do.

 And yet…he overflows with worry and sadness and a new found fear of loneliness.  A few years ago we were told that Ben spends most of his school day alone.  Plays by himself on the playground.  Prefers not to work in groups in the classroom.  Doesn’t socialize during lunch.  Heartbreaking things to hear as a mom who wants so badly for her child to fit in and feel loved.  But these things didn’t seem to bother him.  This year the teachers are telling us that he IS socializing more…that he seems to have gotten comfortable with this group of children enough to open himself to them and engage.   The news was so encouraging!  He was reaching out and talking and laughing…although still learning there is a time and place.  But it never occurred to me that some of the kids weren’t reciprocating.  That although he is more social now than ever…he is beginning to feel alone. 

Last night after several attempts at redirecting Ben toward his bedtime routine, ending in raised voices, Ben sat facing the TV still and silent.  We could see the light from the fireplace reflecting off the tears rolling down his red cheeks.  We asked what was wrong and as is usual, we received no answer.  After a few minutes he turned and joined his dad in the recliner, silently crying in his hands.  This happens often after redirection and consequences particularly if we’ve raised our voices.  This kid internalizes it all.  He takes it personally.  He struggles with inference and assumes that we must hate him if we’re frustrated with him.  I immediately begin the damage control, assuring him that we DO in fact love him and our insistence on brushing his teeth IS out of love and concern…that we ask him to leave the puppy alone when he’s tired and snippy because we DON’T want him to get bitten.  But last night…he interrupted my efforts:

No.  No…it’s not that, mom.  I…I just feel.  I feel like no one at school really appreciates me.

(This of course led to more tears and silence.)

What do you mean, buddy?  I thought you were making friends.  I thought you were getting along with the kids in school. 

No.  No one likes me.  The other day I asked Luke to play a game with me at recess and he just looked at me weird and told me that it was a stupid game and he didn’t want to play with me.

(More tears)

That wasn’t very nice was it?  Well, buddy, who do you usually play with at recess?

Well…sometimes I play football with John.  But usually…I just walk around the playground by myself and wait for recess to be over.



I’m crushed.

The gentleman could see the emotion flowing from my eyes as I quickly turned and let him take over the conversation.  Reassuring him that he is a great boy and lots of kids adore him.  To which Ben replied:

No…they don’t.  I try to talk to them but they just don’t hear me. 

And now…for him…alone equals lonely. 
And I’m devastated.  Because I can’t be there during the day to take that feeling away.  I can’t be there to prove that he’s worth playing with or worth talking to.  And I can’t force anyone to be his friend or share a game with him at recess.  And it kills me that we’ve encouraged him to engage, to get involved, to open up…and all he feels is disappointment and failure.  I know this isn’t his feeling every day.  But often enough that I worry they outweigh the good.   At one time he was content being alone.  I was the one who struggled with that because to me being alone was the same as being lonely.  And I hated that for him.  It took me a long time to come to terms with what makes Ben comfortable.   I’ve been so distracted by his growth and improvement and grades and perceived social interaction that I didn’t see what seems to be hitting him at the core.  He’s there live and in action…in the midst of a typical 2nd grader’s world.  Surrounded by so many others yet feeling so isolated. 

So with Ben, we continue to talk and encourage and work and love.  What he gets from us…here…has to get him through what he experiences at school.  Because I can’t be there all day every day.  While my gut sometimes tells me to pull him out and home school him I DO know the good he’s experiencing does outweigh the bad…and while he feels some hurt…it means he is in fact growing and trying things he wouldn’t have tried two years ago.  It’s hard to see that some days.  But it’s true.   

In the meantime we revel in the fact that he’s getting As and Bs with minimal supplemental support.  He has a teacher who cares and is invested in his success.  We have a school full of folks who adore him and all of his quirks.  I realize what a gift that is. 

He really has come a long way.  We can’t hide him away from the world and protect him from all the things we fear.  We have to show him how to put himself out there and realize that we are his soft place to land at the end of a tiring and frustrating day.   When he feels alone in his world at school, he ALWAYS has us.