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

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.

Whew.

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.

Done

Toast

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 2^nd 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. 

 

 

 

Not Your Average 6th Grade Creative Writing...

One evening last week my daughter peeked into my bedroom just before bed to share that she's been participating in a creative writing lesson each day and would like to share her latest installment.  As parents sometimes do, I agreed with a twinge of regret knowing this story could be quite lengthy and likely a little far-fetched.  Hence...creative.  My Lib...she takes creativity to a whole new level.

But as she began reading aloud, I realized this wasn't her typical fantasy-vampire-dragon-laden dreamscape.  No...this was much more.  Her words heightened all my senses and she instantly drew me in to the scene...the sounds, the colors, the textures.  While the story was short, it left her dad and me speechless.  Which doesn't happen often.  When dad actually stops playing Madden because he's so overcome with the quality of his 11 year old daughter's writing, you know it's good stuff.  I promise to post the first story she shared with us but today...today I must share her most recent tale. 

I assure you, I've already talked at length with her about her emotional state...that this is not in fact a reflection of her own personal feelings.  She's actually a quite healthy, social, involved kiddo who happens to have an amazing imagination:

I glared at myself in the mirror.  I was weak, useless.  I gave in too quickly.  And I was going to die for it.  It all started with that text, or that look, or even that word.  And that last touch, it was bone chilling.  But I'd never feel that touch again.  Not as long as a miracle happened.  My palms were shaky, but I looked down anyways.  Though my vision was blurred from tears, I could see the sink covered with the stain of my pain.  The red ghosts from my past seeping through the small gashes rather quickly.  I did this, but why?

I gripped the polished stone counter and forced myself to stand up, even when my body told me to lie down and accept what I've brought on myself.  But no, I chose to force my gaze through the mirror, looking at the pain I've felt for so long.  My eyes were tired and weary from many nights of no sleep.  My skin was many shades of blue and purple from the bruises I try to hide as my parents greet me from school.  My stomach was small and tight from telling myself to resist the taste, the feel of having something to fill me.  But my face, my face was the worst of all.  My cheeks were always flushed from the embarrassment I felt just being myself.  Being ashamed of by the only people that I had for comfort.  My lashes were clumped from the tears that streaked my face everyday because of the sadness and regret that started when I made one small mistake.  When no one forgave me.  And my smile hid the pain and sorrow I've had deep inside since the day it started. 

And my wrists, they felt it most.  After every thought, after every song, after everything, they were opened, and I watched myself in disgust.

Everything was a blur now.  If it was because of my tears or blood loss I wasn't sure.  But I couldn't see very well.  I hit the door with a thud and faintly heard my mom call my name.  I slumped down against the wall and began to cry.  I cried and cried waiting for the pain to be over.  I-I just...I should've gotten help...

A Lesson in Emotional Masonry

This morning as the kids were scrambling to get ready for school...

Me:  Hey kiddo, are you about ready to go?  You’re not going to be late for school again today. 

Lib:  Sure…just about.  Oh, and Mom…I just want to let you know so you can stop asking about Eric*.  We broke up.   But it’s okay because it was mutual.  I mean…it makes sense. 

Me:  Uh…are you okay?  Who initiated it? 

Lib:  He did.  Through a text message.  So…yeah.  I mean…that was crappy and stuff.  But…yeah.  I’m good.   Totally good.

I saw in her face behind her smile that she was not, in fact, good.   But dammit that 11 year old girl is me.  Through and through.  Her eyes began to water and turn a rosey shade of “this sucks so bad”.   But she continued to smile as I stuttered through what I thought she should hear. 

And what is that, exactly?  What do you say to your sweet girl who just got dumped by her very first boyfriend?

I’ll tell you what my instinct told me to say…

“Honey, boys are stupid…except your dad and brothers of course.” 

“You don’t need him…his loss.”

“He’s obviously too chicken to talk to you face to face…better you know what he’s made of now.”

“Asshole.”

Ah yes…all of the accoutrement that goes with the emotional masonry lesson I so want to teach my daughter.  “Here’s your first spade, and your first brick…build carefully.”  But I can’t.  God, I can’t build her up by teaching her how to harden herself.  How to build those walls tightly around her heart.   While I have made brick-laying an art-form, do I really want that for her? 

Has it always been satisfying for me in relationships past to smile, nod, agree and wish the boys well when they suggest we need time apart? 

Absofreakinlutely.

Even if I cried myself to oblivion in the private comfort of my bedroom, those boys never got the satisfaction of knowing they had the upper hand or were in complete control of the relationship.  In fact my reaction, or lack thereof, always seemed to shake them a bit.  I liked that.  And as they walked away I quickly slap down that next layer, or ten, of brick and mortar.

While I want to protect my daughter from hurt, I don’t want to prevent her from feeling love.  I mean real true deep love.  Can you ever really experience that if you’re only peering at the boy over the fortress you’ve built around you?  I realize she’s young…but dammit right now I’m laying the foundation for her.  How to navigate through relationships and break-ups.   I’m teaching her how to feel about it.  How to respond.  Do I want her upset?  Hell no.  But she has a right to feel emotional about it.  I can’t brush that off and expect her to be tough as steel.  She shouldn’t be.  I want her to let boys in.  Because they AREN’T all bad.  In fact some are quite wonderful.   And nurturing.  And careful.  And I want her to experience THAT.  She deserves to feel swept off of her feet.  And the boys she may encounter (waaaay down the road)…the good boys…deserve to be loved fully and freely by her. 

Yes she will encounter some d-bags-in-training along the way and have to experience a few heartaches in the meantime.  It’s my job to be her soft place to land.  And help her steady herself and focus on the good in her life.  Take the spade and brick from her hand.  And the next time she experiences this kind of hurt…my job…is to embrace her and say:

“I love you, my sweet girl.  It’s okay to cry.  And I’m so sorry.”

 

 

* Names have been changed to protect the innocent.

Italian Beef. You're Welcome.



So here I am...doing what I've said I should do for the last year.  Use my blog for evil rather than good...it's MUCH more fun this way!   If you're new to BlissDis, I typically write about my family and our journey through the world of Autism with my youngest child's diagnosis.  It ain't been easy, to say the least.  And while writing about those struggles (and SOMEtimes successes) can be extremely therapeutic, it sure is a breath of fresh air to write about something OTHER than feeling like I suck at mommy-hood. 

This cooking thing?  THIS I can do! 

Let me just say that I'm thrilled to kick this off with one of my favorite and simplest dishes to make.  It truly makes people wonder if you've slaved in the kitchen over a hot stove for HOURS.  Let's let 'em think that, okay?  It's just easier that way.

Before I get started let me be clear...I'm not a measurin' kind of girl.  In baking, yes...cooking, not so much.  It's aaaalll about taste, you guys.  And tastes vary from person to person.  So feel free to adjust any and all ingredients and portions to your liking. 

Also...don't count on me for technical terms when it comes to meat.  Or pretty much anything.  (Points down to pictures)  These colorful snapshots are here for a reason.  So pay attention.  Are we good?

Today we are making Italian Beef...which is one of those "throw it all in a crockpot in the morning and go on with your day" kinda meals.  Crack open that bottle of wine (because it's ALWAYS 5 o'clock somewhere), paint your toes, do some shopping, catch up on some Housewives, hide from your kids, or the old standard...go to work.  Which for me entails tossing on my fanciest yoga pants and walking 5 feet from my kitchen to my office.  I've got a really sophisticated job, you guys. 

Here is what I think you might need...but you know...make it your own.  I've made it without onions or the fresh garlic cloves and it still turned out aMAHzing, so...

A Crock Pot

4-6 lbs Beef Roast  (I've combined two before...because my family can EAT.)

48 oz  Beef Broth (NOT stock...broth.  B-R-O-T-H)

Jar of Sweet Cherry Peppers

Jar of Pepperoncini

Onion (1/2 - 1 whole)

Garlic (2-5 cloves)

Italian Seasoning

Garlic Powder

Extra Virgin Olive Oil

Worchesteshire Sauce

Salt

Black Pepper

6-8 White Bolillo Rolls

Any white sliced cheese (Provolone, Mozzarella, Havarti, Swiss)



You want to start with unwrapping the beef.  Take it out of the packaging and place on a large plate where you can salt and pepper all sides.  Let that sit and season while you throw the rest together in the pot.  (You're noticing my fancy plate aren't you.  Hang tight...there is more Corelle magic where that came from.  And don't go rushing your local Walmart for these.  I'm nearly positive they stopped making them 20 years ago.)

First to go in...the peppers.  THIS is what makes the beef ITALIAN.  Well that and the Italian seasoning.  But really...THIS.  Like I mentioned, you really can make this your own depending on how well you can handle spice.  You could be like The Domestic Goddess and prefer a 5 star spicey...OR you could be like the Gentleman and struggle with the spice level at Taco Bell.  It's a spectrum, you guys.  And we know spectrums. 
I digress. 

The peppers.  I typically go with one jar of sweet cherry peppers, juice and all.  Oh and lesson learned on my part...pluck the stems off these puppies BEFORE you cook.  I then add either one jar of pepperoncini (again, include the juice) or you could always go with the jar of pre-sliced banana peppers.  Whichever.

In a small separate bowl, combine a couple of hard shakes of Italian seasoning, about one solid shake of garlic powder and add olive oil until its a paste-y consistency.  The oil will help wake up the dried herbs a bit before adding it to the pot.  I know "shake" isn't a technical term...see warning above.  To be honest you can't add too much.  And if you find once it's done that it just isn't seasoned enough you can ALWAYS add more at the end.  In the meantime, let this sit a few minutes while you add the other ingredients.

Next come the onions.  My faves are Vidalia...they add an awesome sweetness to the beef.  They also add not-so-sweetness to your breath.  Your call.

Start by slicing off the ends then down the middle.  This makes it much easier to get that nasty super thin skin off...ya know...the stuff that if you try to peel off with your fingers, you end up with that little piece that just won't come off despite washing and you realize it's still there when you're getting ready for bed that night?  That. 

Once you get it peeled, turn each half flat side down and run the knife through both to get these nice narrow ribbons.  Again, you don't have to use an entire onion...or any onion at all.  That's how kick-ass this beef is. 

 Add your onion slices to the pot and sprinkle with salt and some cracked black pepper.  This gets the onions all excited and juicy while you move on to the love of my life.  Garlic. 

My favorite ingredient...and yet my least favorite to peel. The easiest way to do this is pop off a few cloves from the head...depending on how garlicky you prefer your beef.  With each clove, lay the flat side of you chopping knife on top and "punch" the top of the knife with your hand.  This cracks the peel making it MUCH easier to get off.  At this point you could either chop or dice the garlic...or if you're lazy like me, you just toss them in whole. 

I should note, you do not have to add fresh garlic since you've already added the garlic powder to the aforementioned Italian seasoning paste.  Not everyone is a huge fan.  But quite frankly, making Italian Beef without fresh garlic...well, that's just blasphemy. 

 

Now that you have your peppers, onions and garlic in the pot, it's time to add the beef broth.  I mentioned before to stick with broth, not stock.  Don't expect a technical answer as to why they are different but they are...and the broth tastes better, so.   Also...feel free to add a few dashes of Worcestershire sauce.  Say THAT three times fast.

Seriously.  Do it.

In all seriousness, Worcestershire is not required but I struggle to find a beef dish that doesn't taste better with a touch of this brown magic.

 Once all the liquid has been added, you can spoon in the Italian seasoning paste-ish concoction, followed by the beef.  Make sure the liquid juuuuust covers the meat.  If it doesn't, feel free to add water or hey, if you have any extra beef broth sitting in your fridge that ISN'T past expiration...just add that. 

Cover your crockpot and cook on low for 6-8 hours.  It rarely takes 8 hours to be done, but to be honest, I don't know if it's possible to overdo this meat...within reason.  If you can't get back to it for 9 or so hours, don't panic.  You'll probably be able to just shred it right there in the pot if it hasn't already fallen apart on it's own.  Otherwise, pull it out on a plate and shred with two forks.  Place the shreds back into the crockpot with the broth.  This is when the onions and peppers and seasonings can really work their magic.

While the shredded beef is gettin' all cozy with the juice of the Gods, it's time to get the bread ready. 

As I mentioned, I always go with the white bolillo rolls.  It's not an exact science, completely up to you.  BUT...there is an airy crispness that goes with these particular rolls that is out of this world.  They hold up to the au jus but melt in your mouth.  Slice them open and lay them on a baking sheet, open side up.  See that there foil?  Again with the laziness.  And I'm okay with that. 

I always add cheese to my sammies but it's not required.  Seems a travesty to serve such beefy deliciousness without the melty goodness, but that's just me.  I like to grab an assortment because my crew tends to have varying tastes.  You could go with provolone or mozzarella...I prefer to use both.  OR you could always go with swiss or Havarti.  I've not met a cheese I haven't liked. 

Scratch that.  There was that cheese at BlogHer.    Moving on...

Turn on your broiler and let it heat up.  Pop those rolls under the broiler just until they start to brown.  Please...and I do mean PLEASE keep an eye on this. With white bread in particular this can go really wrong, really fast.  No one wants burned buns.  No. One. 

Once they are browned add one whole slice of cheese...one should cover the bun, depending on size. 

No need to pop the cheese back under the broiler...the beef will melt it for you.  If you choose...and why wouldn't you (please don't disappoint me)...place another half or full slice on top of the beef.  THEN pop it briefly back under the broiler just until the cheese is melty.  Again...please watch closely as to not burn the edges of the bread.  Unless you like that sort of thing...and then, well...go on with your bad self.

If you're like me, you would be totally okay with an extra little kick to go with your sandwich.  This is where giardiniera comes in.  (Cue the opening of the heavens and singing angels.)  My favorite way to eat veggies.  If you've never bought it, you can typically find it by the jar right where you found the peppers...usually in the pickle/olive aisle of the grocery store.  It's a combo of cauliflower, carrots, pepperoncini, celery, and red peppers all with an amazing spicey, vinegary kick.  Either chop it up and use it as a sandwich topping...or just eat them whole as a side item.  Great either way.

Also...I would be remiss if I didn't advise that it is in fact against the law to eat this sandwich without a bowl of au jus nearby.  Just so ya know.

Grab a napkin or ten and eat up!

INGREDIENTS

A Crock Pot

4-6 lbs Beef Roast  (I've combined two before...because my family can EAT.)

48 oz  Beef Broth (NOT stock...broth.  B-R-O-T-H)

Jar of Sweet Cherry Peppers

Jar of Pepperoncini

Onion (1/2 - 1 whole)

Garlic (2-5 cloves)

Italian Seasoning

Garlic Powder

Extra Virgin Olive Oil

Worchesteshire Sauce

Salt

Black Pepper

6-8 White Bolillo Rolls

Any white sliced cheese (Provolone, Mozzarella, Havarti, Swiss)



Landing the Helicopter

According to Wikipedia:  A helicopter parent is a parent who pays extremely close attention to a child's or children's experiences and problems, particularly at educational institutions.

That’s not me. 

I mean…not really. 

Well, not all the time. 

Okay SOME times. 

Fine.

That is me…word for every mother-lovin’ word.

Not so much with the two older kids.  I’d say with them I’m a solid “Stage 3-Momma Bear” but I’ve never hit “Stage 4 Chopper” with them.  I don’t know that I’ve ever felt as though I’ve had to.  Fortunately for both of them they are very relatable, likable, social, athletic, healthy kids.  They talk to me and tell me more than I necessarily want to know on any given day.  I don’t have to interpret for anyone.  I don’t have to defend.  I don’t have to take note of every single aspect of their behavior.  I don’t have to preface every sports season with a coach 1-on-1.  I don’t have to keep copious notes of convos with teachers.  I don’t have a separate folder for each of them with anything and everything health-related. 

So why do I feel the need to be hyper-vigilant with Ben?  Some would say, and many often do, that it comes with the territory when parenting an ASD child.  But Ben is high functioning and if you saw him playing in his room you wouldn’t think he was any different than my other two kids. 

Usually. 

Am I waiting for the other shoe to drop?  Am I that fearful of the horror stories I hear from other parents that I hover too closely hoping to intercept?  Or am I pouring myself into his world, into protecting him, into advocating for him to avoid everything I feel like I’m failing at in life?  Is this really about Ben?  I would like to think it is.  The very thought of someone hurting Ben feels so imminent, and is enough to keep me up at night.  Most nights.   And maybe…just maybe…if I can win at keeping him safe and avoiding hurt then I am not a complete and utter failure.  In at least one thing.  And God, I need to know I’m not failing him. 

 

I’ve mentioned before that I struggle with depression and it comes and goes in waves.  And in recent months…there have been waves repeatedly leaping over my head, the undertow grabbing hold of me and teasing as it allows for a brief moment of sunlight at the surface before enveloping me again.  And again.  If I consume my days with researching health concerns and educational resources and therapies and (I could go on and on)…then I’m silencing that voice that tells me I’m not doing enough.  I’m not good enough.  I’m not living up to my potential.   That phrase epitomizes my life.  I’ve heard it for years.  It resonates to this day.

And in my efforts to NOT fail at this one thing…this one very important, delicate, vulnerable thing…my Ben…I’m isolating myself.  In my attempt to block my own inner voice, I’m also blocking out my friends, my husband and God forbid, my other two children.  What kind of friend, wife and mom does that? 

Me. 

It is taking serious effort on my part to pull myself from this tenacious undercurrent.  I’ve started attending Church again.  Oftentimes alone.  And I’m listening…listening like I’ve never listened before.  I leave with a take-away every single time.  And it’s helping. 

The Gentleman, of course, has been patient…I realize I am not an easy person to endure.  And somehow he is still here.  With a gentle redirection every now and then.  And thank God he knows when not to be so subtle.  With an invitation to reality and the events going on around me that I clearly am not acknowledging. 

But sometimes I need tangible evidence that it’s okay to give Ben some space and focus on something else.  I’m hard-headed that way.

This Spring Ben decided he wanted to play baseball.  As you can imagine my insides literally began crocheting themselves in intricate knots. 

He has ADHD…there is no way in HELL he’ll be able to withstand an entire inning in the outfield without touching the ball. 

He hates when people look at him.  How will he handle being on display while up to bat? 
           
What if he doesn’t make friends?

What if the coach isn’t nice to him?

What if nobody GETS him???  Because they won’t…I just know it.

The Gentleman listened.  And he rubbed my back.  And he told me that Ben would be fine. 

But what does he know?  I mean I WANT him to be fine.   But I just don’t know if baseball is his sport.

Then the season started.  And ya know what?  He played WELL.  The coach?  He was fantastic.  Did Ben meltdown every single time he struck out?  You bet he did.  In the beginning of the season I never sat far from the dugout because I knew that I would need to be nearby to help him through or at least prevent his teammates from intensifying said meltdowns.  As the season went on, though, the coaches started doing more of the comforting with Ben and I tried ever so hard to keep my butt in my seat.  (MOST of the time.)  Some of you know how hard that was.  SO DAMN HARD.  Excruciating. 

 

 

 

Before I knew it, that urge began to subside.  I was witnessing Ben gain a little more control over his behavior, his response to loss.  I watched the coaches learn Ben…and choose their battles.  When Ben struck out, which wasn’t often, he was allowed a turn to “rest” in the dugout while the rest of the team hit the outfield.  They were “getting” him.  Holy shit.  Getting him!  When the coach realized that Ben didn’t understand the concept of an RBI and was taking his inability to make it across home plate as a personal failure, he knelt down and eye to eye explained it to Ben.  When they realized he made it through a game with no meltdowns they rewarded him by having him lead the team in counting down in the huddle afterward.   By the end of the season it wasn’t just the coaches taking him in…it was the other parents too.  Every single time Ben was on deck to bat, the parents began cheering for him, clapping, screaming his name in encouragement.  And if he didn’t do as well as he wanted to, those same parents were still cheering him on the way back to the bench…as he dragged his bat in the dirt, head hanging low.  They knew that just because he didn’t chant in the field like the rest of the kids, it didn’t mean he wasn’t engaged in the game.  They knew that just because he didn’t cheer on his teammates from the dugout, it didn’t mean he didn’t care…Ben was always the first to run to a teammate when they got hurt.  They know he has heart.  Sometimes nothing but.

 

And in the second to last game of the season…as the coach had the boys huddled on the empty diamond congratulating them on a season well played, prepping them for the championship game ahead it was then that the coach recognized Ben in front of his team.  He announced that although they don’t typically give away a game ball, they would in fact be giving THAT game’s ball to Ben.  For hitting every time he batted.  For running four players in.  For not melting down.  For contributing to such a big win.  For being Ben.  And while attempting to take some pictures of the boys in their after-win glow, I swiftly slid my sunglasses back down over my eyes to hide the tears.  And they were a-streamin’, you guys. 

The Gentleman was right.  Dammit.  Ben was fine…and he had fun.  Hear me?  He HAD FUN.  Worth it in my book any damn day.  And no one was out to get him, or see him fail, or treat him unfairly, or make him feel inadequate.  Quite the opposite.  It renewed my belief that I don’t have to build him up by myself.  That I can have faith in people…in his peers…in the leaders in his life.  It’s not Ben and me against the world.  Sometimes I forget that. 

Getting through that season, watching him grow, watching myself let go, I realized that if I never let him experience these things, if I never feel the risk is worth the reward, then my boy will never ever feel complete accomplishment.  And he needs to feel that.  He needs to be proud of himself.  He needs to see the looks in our faces when he endures something we didn’t think he could withstand.
 

 

And I need to re-balance my energy.  I need to focus more on my husband, on ALL of my kids, on my friends.  I need to land the helicopter.  I can’t unrealistically say that the chopper is out of commission.  We don’t know what challenges are awaiting us ahead.  But for now, the motor is off.  And it’s time to just let Ben be Ben. 

In Honor of Mikaela Lynch

As I reflect over the events of the last week in particular my heart aches.  It hurts for poor sweet Mikaela Lynch, Owen Black, Drew Howell and other children who have recently wandered into danger.  It hurts for their families who will never ever be the same.  It hurts in fear of losing my own babies.  While they’re not technically babies anymore, to me they are still just as vulnerable and losing them would cripple me, to be sure. 


My youngest is on the Autism spectrum.  Long before we had a diagnosis we still knew that there was something a little different about Ben.  We never quite knew if he was listening to us.  We never knew if he could feel pain the way we do.  We never knew if he experienced fear.  He was our dare devil, to put it mildly.  But I can tell you for certain it never occurred to me that he would walk right out our door and take off on his own adventure. 

 
Until he did.

 
When he was about three years old he literally made my heart stop for the first time in my life and it’s never quite been the same since. 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 15, 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 my shit 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 generally don’t take him places where he could get lost in a crowd. Lord knows if he slipped out of my hands and ran, I would not likely be able to catch him.  Family gatherings, if not in a small enclosed area, never allowed me to sit and rest.  We were forever asking “where is Ben?” and do to this day when he’s not under my nose. 

 
Do I keep him under lock and key every moment?  No.
 

Do I avoid what could potentially be rewarding experiences for him or our family because I’m scared to death of losing him?  Yes. 

 
I don't necessarily regret avoiding Disney World or places like it.  I'm not sorry that we live in an area that doesn't allow for him to freely ride his bike.  I have a much shorter leash on Ben and have for four years because we now know he's a wanderer.  I am so damn thankful I got a second chance to be an overbearing, overprotective mom.  What I wouldn't do to give these parents who have lost the loves of their lives that chance too. 

 
Right now the parents are hurting.  And they’re questioning themselves.  And they’re taking criticism.  And GOD all they need right now is our love and our support.  It could be any damn one of us in their shoes right now.  Because we never know it can happen to us until it does.  It takes less than a minute for a child to walk out the door and out of sight.  Whether we want to believe it or not, we can’t all be on guard every damn minute.  We take bathroom breaks.  We cook meals.  We are human. 

 
Please…do three things after you read this:

 

(1)   Say a prayer, send positive juju, light a candle for these families that they find peace and support as they move through the following days, weeks, months, years.  You can leave thoughtful messages and notes of encouragement for Mikaela’s family at http://mlvillage.org/about-mikaela/.

(2)   Help thy neighbor.  Maybe not your actual neighbor…but your community, family, friends.  Know that after hearing of these stories those parents who are already on high alert for their own children who have a tendency to wander will be even more-so.  And they are tired.  Lend a hand.  Or two. 

(3)   Please check out and donate if you can, to the National Autism Association’s Big Red Safety Box Toolkit campaign.  They offer grants to families who cannot afford to purchase these kits on their own.

Hug your babies.  Tight.