The Autism Parent: An Untapped Resource for the F.B.I.

Considering the amount of time it took me to find the source of the fluff in Peter’s bedroom (2 weeks), we can safely conclude that I fail at the art of investigation.  However, it has recently occurred to me that there is a skill set, heretofore unpublicized and sorely underutilized, that falls within the repertoire of virtually every autism parent that I’ve ever met.

“Huh?” you ask, quite intelligently.  “What skill set?”

“STRATEGIC, OPERATIONAL, AND TACTICAL LOGISTICS,” I answer.

It’s true.  While every parent has some level of logistical skills, the autism parent learns (real fast!) to develop those skills to military level.

I shall describe what I mean below:

Last Monday I stayed home with Peter because it was Columbus Day and the Autism Academy of S.C. was closed.  A whole day alone with the boy!  Hurray!  What should we do?  On what adventure should we embark?

Answer: A trip to Target and lunch at Arby’s.  Excitement!!!

Okay.  Here is where the logistics begin.  If you take a casual glance at the Table of Contents of “Tactical Level Logistics, U.S. Marine Corps, Department of the Navy” (which is available on the Web for casual reading), you will see a number of headings that apply here.  So we shall stick with those.

Mission:  Easy one!  Trip to Target and Lunch at Arby’s.

Mission Analysis:  Well, duh, we get in the car and go.  Except we don’t.  There are a lot of steps to complete first.  But they have to be done in secret!  Because if we let THE BOY know our Mission, he will want to complete it NOW! And we cannot go NOW until we complete all of the steps involved in our Strategic, Operational, and Tactical Logistics.

Course of Action: Here’s what we’re gonna do: finish breakfast; clean up mess; distract  boy while I take shower and get somewhat presentable for Mission; clean up second mess that will surely happen while in shower (involving crumbs and/or enormous quantities of alien fluff); give boy mid-morning snack; clean up mess; oh, wait, forgot potty visits somewhere in here; did I dry my hair?; secretly pack bag.

Supplies: Mission supplies are critical.  The Talker – mandatory for communication during Mission.  Must be fully charged and operational to prevent meltdown. Drink cup and snacks, in case of meltdown and for use in Expert Bribery.  The iPod, which is outdated technology but the only device that doesn’t rely on WiFi and there won’t be WiFi on Mission and therefore to prevent meltdowns we need a device for The Boy to play on that actually works without WiFi.   Spare change of clothing: in case Mission involves remote areas in which (a) there are no family bathrooms available, and/or (b) Mission Commander (me) fails to notice key signs of impending, um… bathroom necessity.  Shoes for The Boy: shoes must be placed in vehicle (secretly, lest Mission be revealed) because if placed on feet before deployment, they are likely to be dropped en route and lost forever.  The Dog Song: for all things that are good and holy, MUST NOT forget to check car for availability of The Dog Song.  Said “Dog Song” is CD on which Track 3 features barking dog set to tune of “Old Mother Hubbard” which The Boy insists on listening to ad nauseum.  Stroller: may not need, but bring anyway for containment purposes in case Commander senses impending meltdown.

Available Forces: Me.  Vehicle.  Mother Nature.

Phases of Action – Deployment:  One last potty break, then time to inform The Boy of Exciting Mission.  Wait for manic jumping to stop.  DEPLOY! DEPLOY! DEPLOY!

Phases of Action – Departure:  Load Boy in car.  Check one last time for supplies, shoes, and Dog Song.  Secure Boy in booster seat using military-grade seat belt lock lest Boy begin standing in back seat and sticking face in Driver’s hair.  Arrange Talker on seat for ease of communication. Start engine.

“Dog Song” says The Talker.  AAAAARRRRRGGGGHHHH!

Phases of Action – Transition:  Pull into Target parking lot, which requires passing the Arby’s.  “French Fries,” says The Talker.  Long persuasive discussion ensues whereby Mission Commander explains “First Target, then Arby’s” multiple times.  Search for perfect parking spot, requiring Advanced Strategic Analysis.  Can’t be near the cart return, lest Boy spot it and make beeline for carts (his ultimate joy in life).  Must not be too far from door lest meltdown occur in parking lot, in which case bench-pressing 95-pound Boy in rough terrain would be required.  Cannot be within sight of the Arby’s – a difficult task as it’s about 400 feet away.

Landing Zone:  Find spot, park, install shoes on feet (the Boy’s), gather equipment and other mission-critical gear.  Another decision: take stroller or not? Opt for no stroller in hopes that Special Needs Cart is available.  Begin to pray. Grasp Boy’s hand firmly and make way to Target’s front doors.

Phases of Action – Arrival:  Make it into Target with no incident; Mission still under control.  Divert Boy’s attention lest he make beeline for cart-parking area. Look around in search of Special Needs cart.  If not available, will need to haul Boy into basket of regular cart though he is too big to fit.  Also leaves no room for the purchase of additional supplies and equipment.   However, containment is always a priority.  Hurray!  Special cart is available!  Strap Boy in.  Begin maneuvering of monumental, tank-like, nearly undriveable vehicle, AKA “Special Needs Cart.”  Only ram into one or two walls and feet.

Mission Operation – Flexible Approach:  Next strategic analysis involves direction.  Towards household supplies (for boring supply purchases) or towards toys and TVs (the Boy’s second-most ultimate joys in life)?  Both involve risks.  Household Supply Risk: total meltdown due to not being near TVs or toys.  Toys and TVs Risk: total meltdown upon leaving toys and TVs.  Opt to take Household Supply route, repeating mantra “First shopping, then TVs, first shopping, then TVs.” Manage to throw needed supplies into cart at breakneck speed with minimal melt-down-age.  iPod and two crackers utilized as diversionary tactics.

Establishing Command:  Hmm… skip that step.

Movement Control:  in front of TVs.  Boy is unstrapped and jumping up and down with glee.  Movement Control not possible.  Shall speak with higher-up Commander to suggest elimination of this step in future.

Phase 1 Mission Wrap-Up: Target portion of Mission nearing completion.  Must follow exit plan: namely, offer Boy all diversions while secretly leaving toy area to head for check-out.  Less than successful.  However, Mission still under control as Boy is strapped in again and screaming (his) only makes Commander (me) walk faster.  Pay for supplies.  Burst out of Target, push 500-pound tank-like special needs cart uphill towards car, apply brake lest 500-pound tank-like special needs cart zoom back down hill towards certain collision and mayhem, unload supplies into vehicle, unload Boy, strap him into booster with military grade seat belt lock, run 500-pound tank-like special needs cart to cart return, run back to car.

“Dog Song,” says the Talker.  AAAAAAAGGGGGGGHHHHHH!!!

Phase 2: Arby’s.  Start engine, attempting to control panting and sweating.  Drive 400 feet.   “French fries,” says the Talker.  Pull into Arby’s parking lot, running through Tactical Logistics Operations Procedures for Phase 2 of Mission.  (Park car, gather equipment, drag Boy into restaurant, attempt to contain Boy while ordering, find seat, listen to “French fries, french fries” while waiting for food to be ready, determine how to contain Boy to go get food once it’s ready, determine how to contain crumbs once food is ready…).

Oh, forget it!  Am going through Drive-Thru!  (Example of flexibility.)

MISSION COMPLETE!

Debriefing:  Arrive home completely drained and exhausted and attempt to take Power Nap while Boy destroys house.

The Untapped Workforce:  SO… now do you see?  Do you see how NASA and the FBI and Special Ops Forces have totally dropped the ball in discovering this supply of qualified and dedicated Tactical Logistics Operators?  We – the parents of autism kids – have some SKILLS.

Let me just say: my Tactical Logistics Operations Skills are pretty darn good.  But when I start to pat myself on the back, I think of my neighbor down the street who has a set of 6-year-old twins with autism.  And they are runners.  I can just imagine the Tactical Logistics Operations that go down in THAT family!  They could RUN the FBI!!!

 

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The Case of the Reappearing Fluffballs

Yesterday I spied on my son.  Turns out I’m no Nancy Drew, because I did NOT solve the mystery.  Back to Spy school I go!

Let me explain.  Peter’s room is basically the only “Peter safe” room in the house.  My dear Dad turned the bedroom door into a barn door, whereby we can lock the bottom half and leave the top half open.  In essence, we are able to lock Peter in his room for short periods of time (don’t judge) and still be able to hear what he is doing.  Mostly.

You may note that I put quotation marks around the words “Peter safe,” above.  This is because as soon as you think you have a room Peter-proofed, he immediately proves you wrong.  It’s his talent.  Case in point: Last week he discovered his window shades and proceeded to gnaw on the little wooden knobs attached to the ends of the cords.  So I cut them off.  This week he has discovered the joy in lifting and dropping the shades with the cords, over and over.  Slam!  Shades down.  Whoosh!  Shades up.  You get the picture.

Continue reading “The Case of the Reappearing Fluffballs”

That’s When it Hit Me

Scene Heading: The First Time I Realized My Son’s Disability Was Obvious to Others

The Setting:  A Christmas party at my sister’s house 4 years ago.  It is late in the evening.   The party is magical, as it always is whenever my sister is hosting.  The atmosphere is festive, jovial, full of the spirit of the holidays. 

Peter, at age 4, is scurrying about “doing his thing,” playing with his iPad, jumping up and down with excitement, making happy sounds, eating his favorite chips and pretzels.

I am standing in the kitchen, smiling at my son’s obvious happiness, when I notice a woman – a stranger – staring at Peter.

The Dialogue:

Me:  Hello.  I’m Laura, Maria’s sister.

Woman:  I figured that out.

(a beat)

Woman: What’s HIS problem? (nodding towards Peter).

Continue reading “That’s When it Hit Me”

Just One of Those Days

A few days ago I had a conversation with a tennis friend about the troubles she has been having with one of her children.  Later, she texted me to apologize.  “I’m sorry I was so negative,” she said.  “I know that in the scheme of things, this is minor… sometimes it just feels big.”  I told her she didn’t need to apologize, and that we all have good days and bad days.

I know what she was feeling, though.  Probably guilty for complaining, for not being perfect.  I know, because yesterday this is what I posted on FaceBook shortly before falling into bed with exhaustion:

Continue reading “Just One of Those Days”

The Tracker Jacker

This post has nothing to do with the dreadful, genetically-modified tracker bees in The Hunger Games.  Instead, it’s all about a tracking device that Peter wears on his ankle that we call his “Tracker Jacker.”  We think it sounds cool.

I’ve written about this before in my blog post about safety.  But I wanted to place special emphasis on this particular safeguard, in light of so many recent articles about kids with autism going missing.

Children and adults with autism are prone to wandering away from a safe environment.  Wandering is also known as elopement, bolting, and running.  It happens when a child is trying to get to something of interest (water, train tracks, a playground) or to get away from something startling or frightening (loud noises, commotion, or bright lights).

There are obviously many dangers associated with wandering, and because children with autism are often challenged in language and cognitive function, it can be difficult to teach them about dangers and ways to stay safe.

The statistics on wandering behavior in autism are startling.  According to the National Autism Association: 

  • Roughly half of children with autism attempt to “elope” from a safe environment (a rate nearly 4 times higher than typical children).
  • More than a third of those who wander are unable to communicate their name, address, or phone number.
  • Parents of elopers report “close calls” with traffic injury or possible drowning.
  • Children with autism are 8 times more likely to elope between ages 7 and 10 than their typically-developing siblings.
  • Wandering is ranked among one of the most stressful behaviors associated with autism by parents of elopers; many parents report sleep disruption due to fear of elopement.
  • Families with children who elope often choose to avoid activities outside the home.
  • Half of families with elopers report never having received advice or guidance about elopment from a professional.

Since Peter falls into the “wanderer” category (he has escaped from the house twice before we installed door alarms), we knew we had to take steps to keep him safe.

I did some research and learned of a program called Project Lifesaver.  This amazing program provides “timely response to save lives and reduce potential injury for adults and children who wander due to Alzheimer’s, autism, and other related conditions or disorders.” Basically the program provides transmitters that can be worn on the wrist or ankle. If the person wearing the transmitter goes missing, the caregiver notifies their local Project Lifesaver Agency (in our case, the local Sheriff’s Department), and a trained emergency team responds to the area, using the individualized tracking signal to locate the missing person.

This program is amazing!  Peter wears his “Tracker Jacker” on his ankle always.  It can even be submerged in water, so it doesn’t have to removed at bath time.  Once a month, a wonderful Deputy from the Richland County Sheriff’s Department comes to our house to change the battery and to chat with us. Her name is Lee Wright, and in the photos below you can see her attaching the Tracker to Peter’s ankle:

 

 

Lee has gotten to know our family, has learned about Peter, and has become familiar with our location in case we ever need to use the system.  This brings an amazing amount of comfort to us!  Statistics show that most elopers using this tracking system are found within 30 minutes!  I highly recommend asking your local law enforcement to participate in the program if they don’t already.  Below is a photo of our Sheriff’s Department’s brochure about Project Lifesaver, as well as a recent screen shot from the Project Lifesaver website:

I know that all parents of children with autism worry constantly about safety.  This is one fairly simple (and free!) way to bring peace of mind.

Plus, your child can have his or her own “Tracker Jacker,” and how cool is that?

 

You Made My Day

Sharing a memory from my Autism Journal (December 2012):

Every morning when I walk down the long hallway of Peter’s school, headed for his classroom with him holding my hand, he makes his loud “happy noises.”  He loves school and skips and hops in his own clumsy way in his excitement to get to his classroom.  Sometimes I wish he would be a little quieter, because we get puzzled looks from the older school children who pass by in the hallway.  They don’t understand why he makes those noises.  And every morning, Peter looks into every classroom we pass and smiles.

One particular teacher always steps into the hallway and says, “I hear Peter coming.  Good morning, Peter!  How are you today?  I’ll see you at lunchtime!”  This morning she called out to me after we passed by:

“Ms. Kane?”

I turned around.  “Yes?”

“I just want you to know that Peter always makes my morning.”

Wow.  That really made MY morning, and I don’t even know her name!

Thank-You-You-Made-My-Day-m201

Lessons Learned on a Sunday

No matter how much I think I “know” my son, he continues to baffle me.  Yesterday, on what should have been a peaceful Sunday afternoon, I learned two important lessons:

Lesson #1: No More Naps!

Since Peter was sick on Friday and seemed a little run down, I thought it would be a great idea to let him have some “rest time.”  This consists of me taking a power nap in his room while Peter plays with toys, quietly, on the bed.  Well, he fell asleep.  I let him rest for about 2 hours.

I regretted that decision at 1 am when he was still wide awake and tossing noisy toys around his room!

Continue reading “Lessons Learned on a Sunday”

A Day of Firsts… and Lasts?

Son #1: First Day of College

 

Yesterday was a Very Big Day.  Our oldest son, Christopher, moved into his dormitory at the University of South Carolina.  It was a whirlwind of activity: fighting traffic, finding a parking spot, lugging tons of stuff up twelve flights of stairs to avoid the lines at the elevators, cleaning the dorm room (ugh), decorating, sorting, etc.  When we (the parents) were told (by the son) that we really didn’t need to hang out in the dorm all day, we took a deep breath and said our good-byes.  First-born son.  In college.  Sob!

Continue reading “A Day of Firsts… and Lasts?”

A Life Free of Hatred 

When it seems as though the world will burn itself into oblivion with hatred and bigotry, I look at my son and think, “Thank God he doesn’t know.” 

He doesn’t know that citizens of our own country can turn against one another in an instant, like wild animals.  He doesn’t know violence. He doesn’t know evil.  He doesn’t know racism, prejudice, discrimination. 

He is not aware that these blights on our society exist. 

I turn away from the horrifying media images and look at him. A perfect, innocent soul incapable of hatred. 

He may never be aware. He may never know. 

And today, I thank God for that. 

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