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Thursday, April 10, 2014

The Almost Locked-Up Series: Part 1: Busch Gardens

I'm kind of an emotional guy.  When it comes to defending and protecting my son, I am finding that I have a very short fuse.

Busch Gardens, Virginia:  If you have ever been there you understand that it is basically built on the side of a mountain.  It is extremely hilly and difficult to navigate on foot, and it's spread out over acres and acres of beautiful property. 

Understanding how difficult the terrain is to navigate, the Busch people designed an elaborate system of Sky Rides that gently whisk you through the air to various Sky Ride depots around the park.  Seems pleasant enough, right?

It was about 103 degrees and 99.9% humidity.  My son was about 4.  My daughter was about 7 and my wife was about... (do you think I'm crazy?)  We brought Eric's stroller that basically served as our pack mule for the day, loaded with all of our ammunition to keep Eric happy.  It held his juice, his Sesame Street guys, his cloth diapers, spare clothes, an ironing board and, probably a power tool or two.   And guess what... strollers weren't allowed on the Sky Ride (they are now, and I think I am solely responsible for that change of policy). 

I don't remember what got into us, but we must have been feeling especially froggy that afternoon.  We wanted to make a trip to the other side of the park, which might as well have been the other side of the continent.  We assessed the risk, Eric's mood, our overall stress level at the time and our chances for going down in flames, and decided to park the stroller and take the Sky Ride to the other side of the planet... I mean park. 

Eric LOVED the Sky Ride and, to this day it remains his favorite ride at any amusement park.  We touched down about 300 nautical miles from where we left our stroller and actually had a pleasant 4 or 5 minutes of entertainment.  Until....

Eric wanted his diaper.  No, I mean Eric WANTED HIS DIAPER NOOOOW! 

Patience has never been his strong suit.  I'm not quite sure where he gets that trait.  But he went into complete meltdown...  kicking, screaming... snot flying meltdown. 

I wiped the sweat off my brow and did what any chivalrous moron husband would do:  I volunteered to take the Sky Ride back to the other side of the planet with Eric and retrieve his coveted diaper.

I had to pick him up and carry him.  Did I mention it was 156 degrees?  We reached the Sky Ride depot and the line to board the freaking thing was about 20 minutes long.  Eric continued to kick and scream and was beyond being reasoned with.  I kept a brave face on and held it together all the way through the line.  I reached the boarding platform and... let's call him Billy.  Billy the 17 year old Sky Ride operator stopped us. 

"Sir, he can't get on the ride while he is screaming and kicking.  It's a safety hazard."

My peripheral vision started to go black, but I kept it together a little longer.  "He's OK," I said. "I just need to get to his stroller on the other side of the park.  He'll be fine once we get on."

My man Billy was bucking for Head Safety Officer or something.  "I'm sorry, Sir.  I am not allowed to let any child who is screaming and kicking on the ride."

Yeah, I think you know where this is going...

"Listen, Billy.  That is the second time you called this thing a 'RIDE'.  It's not a 'RIDE'.  It is TRANSPORTATION!  The jackasses who built this freaking park designed it so you have to use these flying death boxes to navigate this Hell Hole!  I'm not trying to get on for my enjoyment!  I'm getting on and you are pressing that God-Damned green button."

Billy had spunk.  "It ain't happening, Sir."  Then he picked up his little bat-phone to call security. 

I have a very well-paying job and a great pension.  My bosses don't often see the humor in disorderly persons arrests in far-away states.  I'm not good at math, but I did a quick calculation in my head and realized Billy was holding all the cards.  I backed down.

I carried my son through the entire park on foot.  Somewhere around mile 15 he fell asleep on my shoulder and I actually began to chuckle to myself.  "Someday I'm going to write about this.  They will never believe me."

Tuesday, April 8, 2014

Inept and Inadequate


So I've been doing this blogging thing for a couple years now.  I am so appreciative to everyone who has taken the time to read my stuff.  And it has been humbling to hear that the things I have written  have helped a few people.  My proudest moments are when I am told that I inspire someone or give hope to someone who is having a down day, week or year.  It is literally the coolest thing I have ever experienced.

But here's the thing...  (isn't there always a thing?)

While I try to "keep it real" and present our crazy life unvarnished as the roller coaster it is, I seldom post when I am a complete ass to my wife and snap at her during a tense moment or bad day (which are pretty common recently).  I rarely mention the times I lose my patience with my son and have to lock myself in the bathroom to avoid yelling.  I infrequently describe how many times I fail at this parenting thing.  And I never make witty or clever memes that represent how many times my selfishness and self pity cause me to break down in tears.

The danger with this blogging thing is it doesn't show the complete picture.  It is filtered.  "Acceptance", "Healing", "Finding your happy place"... whatever you want to call it... is not a destination.  It is a process... an imbalanced, often ugly process.  It doesn't magically end and the trajectory is not a straight line.  It involves good days and horrible days.  You think you have it all figured out for a few weeks and you get cocky... then your little hero bites the teacher or smears poop on the walls and you come crashing down to Earth.  It affects all of us.  It cripples some of us.  The best of us shake it off a little quicker and keep moving forward.  The phonies among us never mention it.  And those of us who are searching in the wilderness for some sense of affirmation that we aren't completely inept or inadequate often end up feeling worse than before we logged onto Facebook. 

So here's to the inept and inadequate!  Our club is bigger than you think.  I'm thinking of running for President. 

Thursday, August 29, 2013

You Just Get Faster



Legendary cyclist Greg LeMond is credited with a wise and brutally honest response to a question about his training and dedication to his sport:

"It doesn't get easier, you just get faster."

I received an email recently from a mom who was dealing with a fresh diagnosis of her four year old son.  She was asking for advice and a sliver of optimism about what stood before her family.  It brought me back to our early years when we were lashing out, grasping at any piece of hope, positivity or promise of security.  And it sent me on a week-long introspective journey that led me back to Greg LeMond's quote.

It doesn't get easier, the battles just change.  The initial shock of the diagnosis fades into fights with school systems and insurance companies over treatment and services.  The fear that he may never communicate fades into apprehension about leaving his warm, comforting teachers and starting middle school in a brand new environment.  These battles and fears will morph into new ones... and so it goes. 

Maybe, if you're lucky, you will find peace.  Maybe, if you're lucky, you will learn mechanisms to fend off those moments (days) of depression and crippling fear about the future.  Maybe, if you're lucky, you will learn to hide from that vicious, ugly monster named "Comparison".

Maybe you will find an outlet for all these emotions.  Maybe you will start a blog and write about these fears.  Maybe, if you're lucky, you will start to receive wonderful compliments from thousands of people you've never met who thank you for helping them get through their tough days.  Maybe you will lie in bed at night and giggle to yourself because you have them all fooled into thinking you have the first God-damned clue about what you're doing.

Then, maybe you will put a pillow over your face as your giggles turn to tears and try to mask them from your wonderful wife... because you have her fooled too. 

Then, maybe you will wake up the next morning, kiss your little hero on the forehead, fry up some bacon for breakfast, and get back to it.

It doesn't get easier, you just get faster.

Thursday, July 25, 2013

My Advice For the Autism Mom (Guest Post by Mrs. Bacon!)


Stop blaming yourself.  We may never know in our lifetime what ultimately caused our precious child’s autism, but trying to reverse the clock or dwelling on the past is not going to be productive or helpful for you or your child.

Take time for yourself.  It took me about 3 years into our autism journey to figure this out.  Since I became a mom, I had always put everyone else as a priority – except for myself.  I learned to say ‘no’; I set goals for myself and found a hobby I really enjoy (triathlons) and signing up for races forced me to stay committed to a work-out schedule which has been a life saver for me.  I’m in better shape now then I was 20 years ago – and it’s the BEST thing I did for my mental health too.  Find 3 hours a week for yourself –3 measly hours – you are worth it!

Ask for and/or accept help and be OK if things are not perfect.    I’m a mom.  I should be able to run the household, keep tabs on my children, still manage my full-time job, volunteer at schools, help out friends or family, and still have time to do that cute little craft project that I read about in a magazine. Well, apparently I am NOT super-woman and can’t do it all.  I’m finally ok with that – laundry piles up for more than a week; the dust bunnies linger on the floors for longer than I’d like; and well those craft projects will just have to wait until another year….  I’ve been blessed to have help from family that I know not everyone has access to.  Our family senses when we need a break and just gives it to us…. For that I’m grateful!  But it was very important for me to learn to ASK for help when it’s needed.

Embrace the autism community.  At first I couldn’t even bring myself to say the “A” word without completely crumbling into tears.   I resented people mailing me articles they read, or asking me if I wanted to talk to someone’s great Aunts neighbor who knew a child with autism.  In time though, I ventured into that world and have been lucky enough to make some fantastic friendships.  All parents are considered “protectors” of their children – but I am regularly amazed by the mob-like support you can get from other autism parents.  There is an intensity and simplicity that is shown that takes my breath away.

Live in the present.  My husband had to give me this polite smack on the head sometime last year and if I remember his quote exactly it went something like “stop mourning the life you thought you would have, and start enjoying the life you do have!”  I still have to battle these feelings.  I often feel like I live in different time periods “before autism” “during autism” and I have an “after autism” in my head too.  I know they aren’t exactly logical ….  Living in the present will help you to focus on the daily victories instead of the future worries that we all have.

And lastly, my most important tip to remember…..make sure the therapy center you visit weekly with your child has a place nearby where you can get a quick pedicure while you wait for your child!  ;-) Remember- taking care of YOU is important!

Monday, July 8, 2013

The Pocketfinder GPS Personal Locator: A Bacon Review!



A couple weeks ago I lost Eric for twenty gut-wrenching minutes at a water park in San Diego.  You can read all about that little incident here:  "The Day I Lost Him at the Water Park".  This was the fourth time we had "misplaced" our little renegade in his nine years and, by far, the longest span of time. 

When my hands stopped trembling and I finished my last swallow of a greatly needed alcoholic beverage, I decided that it was well past time to invest in some form of locating (tracking) device for my little wanderer. 

I did a little research and decided to purchase the Pocketfinder GPS Personal Locator.  I was won over by its reviews, claims of small size, durability and ease of use.  As promised, here is my review of the product based on our experiences so far: 

Price:  I found the Pocketfinder on Amazon.com for $99.00 plus tax.  They offered free shipping, but I paid a little extra for 2nd day delivery.  The monthly service fee for using the device is $12.95 per month in the U.S.  There are no "basic" or "premium" plans to consider.  There is only one plan and it includes all of the capabilities of the device, which includes some pretty cool features.

Service Plan United States Canada & Mexico International
Monthly Cost $12.95/month $15.95/month $29.95/month
Number of Location Lookups Unlimited Unlimited Unlimited
Number of emergency contacts Unlimited Unlimited Unlimited
Email Alerts Included Included Included
SMS (Text Message) Alerts Included Included Included
View 60 Day History Included Included Included
iOS Push Notifications Included Included Included
Unlimited Zones and Speed Alerts Included Included Included
Medical and Emergency Info Files and Photos Included Included Included


Size:  The Pocketfinder website touts the small size of the gizmo as comparable to an Oreo cookie.  This is a little misleading.  Yes, the device's diameter is about equal to an Oreo, but its thickness is closer to two Oreos stacked together.  It also has a small protrusion that I believe houses the unit's antenna.  It is relatively light, but not undetectable, which is an issue for my little guy as I will describe later. 

Reliability:  I was very impressed with the device's accuracy.  The company says it can reliably locate the device within 10 feet and that seems about right in my experience.  I had some initial problems locating the satellite for the first time, but I have had issues with RF interference hampering other GPS devices (heart rate monitors) in my home.  After a brief walk around the block it located its satellite and has been very reliable since. 

Durability:  The gizmo seems very well built and solid.  They say it's waterproof and shock resistant.  I have not yet experimented with either, but don't see any indicators to doubt their claim.  It comes with one latex covering (bright green) that serves as added protection and as the connector holding the included attachment hook (to secure the gizmo to clothes, backpacks, etc.).  I am a little concerned that the latex will rip if pulled hard enough leaving the device rendered useless on the ground somewhere.  I wish they had drilled a small hole in the plastic housing of the device itself to attach the hook and increase durability. 

Ease of Use:  I am pretty technologically savvy, but this gizmo is extremely simple to set up and use.  It requires logging in to the website and/or downloading their free smartphone app.  The app and website are very simple and intuitive.  They both allow the user to set up "zones" of adjustable size and notify you if the gizmo travels outside the zones.  I think this will be useful.  However, so far I have received a ton of random alerts that the device has left my "home" zone, even though it hadn't moved from its charging cradle.  If I can not locate the reason for these false alarms and develop a sense of trust of their accuracy, I envision turning off the feature to avoid "Boy Who Cried Wolf" moments. 

It runs on a rechargeable battery and includes a sturdy and well-made charging cradle.  They say it will last up to 20 hours per charge depending on the power adjustments you make. You can set it to ping at differing time increments.  The more time between "locates," the longer the battery will last. This claim seems a little stretched, but close.  It also will send you an alert as the battery life falls below a level you can set.

Bottom Line: All in all, the device works exactly how it is advertised.  It is a quality product that operates very reliably. 

Now for the bad news:  There are some practical issues with the device for a family like mine.  If you don't already know, my son has Autism.  He is extremely sensory and not very tolerant of bracelets, necklaces, anklets or jewelry of any kind.  The day after it arrived, I charged it over night.  My father came to pick up Eric early the next morning for their weekly Chuck E. Cheese date and I slipped the gizmo in the cargo pocket of his shorts for a test run.  In fact, to be extra cautious with my new investment (and knowing my son), I used a safety pin to secure it inside the pocket.  I dressed my little monster and off they went.  An hour later I fired up my laptop and attempted to locate my son.  The website indicated that he was still in my house.  I refreshed it a bunch of times and thought their might be a slight delay, but the application still located the device in my house.  I was halfway through dialing customer assistance, thinking it was malfunctioning, when I saw the gizmo sitting on the kitchen counter.  Within 2 minutes of putting on his shorts Eric felt it, located it, removed it and discarded it. 

I tried a second test run that evening.  I ditched the subtle and slick approach and approached the problem directly.  I secured it to the outside of his pants (belt loop) and pointed it out to him.  I told him that it was very important and not to remove it.  He removed it within 5 minutes and handed it to me. 

For the device to have any trust-worthy value to me, I will have to implement a behavior plan to keep him from removing it and discarding it.  Hiding it is simply not possible.  It is just too big and thick.  This isn't a deal-breaker and I am not giving up.  But it will be a little more complicated than I had hoped.  I will keep you posted and welcome your thoughts and comments!















 











































































Sunday, June 30, 2013

The Day I Lost Him at the Water Park

It was Day 8 of our vacation and our third day at this particular water park.  As usual, his main love was the wave pool.  He had already spent hours wave hopping when he looked up, peeled off his goggles,  and asked to go to the "Splash Castle".  This was his name for an immense jungle gym of water spraying and splashing chaos on the other side of the park.

We made a quick plan:  First we would play on the Splash Castle, then we would take a lap in the Lazy River, then back to the wave pool.   Off he sprinted, with me trying to keep up and lifeguards every 100 feet yelling at him to "Walk... don't run!"

We arrived at the Splash Castle and he melted into the chaos.  Usually, his big sister stays in tow as he navigates the immense maze of nets, walkways, stairs and slides.  She keeps him from cutting the lines and getting beat up by the older kids who sometimes misunderstand his occasional disregard of common courtesy.

This time, however, my daughter and my wife decided to hit a few water slides of their own, leaving me to keep an eye on our little maniac.

He did his thing for a few minutes, running up and down the huge structure, stopping occasionally to splash in the water.  Then he gave me a head fake.

It only took a second, but I lost track of his little legs among the crowd.  I circled the structure, heading toward the general direction I last saw him running.

He wasn't there.  I circled back, expecting at any second to spot his bright blue and green bathing suit in the crowd.  I didn't.

The first pang of fear was minor.  It had only been two minutes or so.  He would pop up any second.  After five, seven, ten minutes, the pangs grew more severe.  It took me fifteen minutes of fruitless circling and searching to approach a lifeguard and ask for help.  She was nice enough.  She recognized his description and said she thought he was still playing up on the structure.   She called Security and told me they would send an officer right away. 

"Right away" turned into seven more minutes as panic began to settle in.  "Skippy" the Security Guard finally arrived.  I'm sure he was a very capable young college student.  All I saw, however, was a 12 year-old punk kid wearing an over-sized uniform he stole out of his father's closet.  I went into "cop mode."

I gave him a detailed description of my son, his swimming abilities and his behaviors.  He wrote down every third detail.  I ordered him to send two more guards to the wave pool:  one to find my wife and daughter and the other to start scouring the water for my son.  I ordered him to find the kill switch for the "Splash Castle" and to start ordering the kids to come down off of it. 

I noticed that several parents lounging around the area began to take notice of my plight and nosily listen in, but none felt compelled to pitch in and help.  That pissed me off. 

At that point I realized that "Skippy" was over his head.  His biggest asset to me was his portable radio that could be used to quickly communicate my son's description.  Beyond that, I was on my own.  I forced myself to keep my head together and keep my composure.  It took all of my strength. 

Then I remembered our "plan:"  "First, Splash Castle, then the Lazy River."  I ran over to the Lazy River and jumped up on a rock to get the best possible vantage point.  This earned the attention of a young surfer-dude life guard that I named, "Spicoli".  He yelled to me something like, "Dude, you can't be up there."  

I responded, "I'm looking for my son.  He has..."  Before I could finish my sentence, Spicoli turned it up a notch.

"Sir, I'm telling you to get down."

I replied, "And I'm telling you to go F..."  and then I saw him.  My little maniac, floating down the Lazy River without a care in the world.

I dove in the water.  Spicoli's head almost exploded.  I hugged my son and grew sad at the confusion in his eyes.  He had no idea he was lost.  He had no clue I was frantically searching for him.  I tried to explain it.  I have no idea if I got through.  We've come so far.  We have so far to go.

I'm sorry, Spicoli.  Stay righteous.

Wednesday, May 29, 2013

"Alec Speaks" A Guest Post By Julianna Gil de Lamadrid



Alec Speaks...

    Autism as some of us know, is a far complex disorder that continues to baffle doctors, scientists, and researchers till this day. For the most part, we (the autism community) have acknowledged a basic set of traits found in autism that we can associate with deficits in neurological response, sensory processing, and communication. Because ineffective communication plays such a big role, it becomes more difficult to pinpoint what triggers or settles certain behaviors.

    The term “non-verbal” is often associated with the word “can't”. “Your child can't speak.” “Your child can't communicate appropriately with peers.”
   
    My son Alec is one of 3 siblings on the autism spectrum. He is non-verbal. Alec doesn't speak. Alec doesn't communicate appropriately with peers. Alec was diagnosed with autism as early as 12 months of age. He developed slowly, in the midst of immeasurable frustration, due to his inability to make his needs known. He was encouraged by several of his therapists to incorporate sign language and the use of pictures to relay his thoughts and requests. Alec was unable to adapt to either concept.

    Alec was a little over 2 when he was caught independently typing words in the search bar of his father's iPod. This boy, who continued to work on identifying letters of the alphabet during ABA sessions was independently and accurately, reading and typing words far beyond his age expectancy. The truth is Alec, like many children on the spectrum, chose not to respond to work that minimized his capability. Is it possible that the concept of speech minimizes what autistic children are truly capable of as well?

    By age 3, Alec was independently browsing the internet for language tutorials. Alec's first spoken sentence was in Italian, a language not spoken by anyone in our family. As suddenly as we were blessed with the sound of his voice, the language ceased permanently. It was then that I learned how far ahead of the game Alec truly was. Alphabet and number flash cards, pictures of clothing items and activities, all became obsolete. Alec could read, Alec could spell, Alec could type, Alec could speak!

    By age 5, Alec discovered a passion for music; namely, The Beatles. I, like many others, was unaware that the part of the human brain that processes speech is entirely separate from that which processes musical lyrics. Because of this, and Alec's obsession with every Beatles song, I am able to hear my son's beautiful voice through lyrics every day.

    Although Alec doesn't speak to me directly, or call me “mom”, I know am one of the lucky ones. Not every ASD parent gets that chance to hear their child's voice. Hope is knowing one can, rather than can't.  My understanding of Alec's knowledge can no longer be put into words. When I hear my non-verbal son sing every word to The Beatles, Let it Be, I am the one left speechless.

                                Julianna Gil de Lamadrid