Data, Data Everywhere. . . There’s More to the Story Than You Think


I’m back.

It’s been awhile.  Ok, it has been a very long time, but I have been really, really busy.  Now, I am back and writing with force.  There is quite a bit to say and the first topic on the list is the Department of Defense’s Exceptional Family Member Program (aka EFMP).  My dog recently got out of the fight, but over the course of the last year, a number of issues and pieces of information have come to light and maybe it is just time to share them with other EFMP families.

Last fall, I had the good fortune to work with a good deal of really rich qualitative data focused on DoD families and their exceptional family members.

The Research

A little info about research and data analysis. . . .bear with me as my professor self emerges for a few seconds. . . .

Data can be qualitative or quantitative.  Responses can be elicited, evoked, provoked, prompted.  People who give their responses can be respondents or subjects, depending on the type of study being conducted.  Subjects are participants in controlled experiments, any other types of studies, such as ones that would measure attitudes, beliefs, feelings or attempt to describe behaviors, would involve respondents.  Respondents are those who are asked to answer questionnaires where the options are limited, possibly scaled (as in “strongly disagree” to “strongly agree”) and no opportunity is offered for additional comments.  Their answers are “prompted” and the data being collected are “quantitative” data.  The researcher is absent, often in a double-blind scenario, which means that neither the researcher sees the person filling out the questionnaire nor does the respondent ever see the researcher.  Traits, behaviors, attitudes, beliefs, all measured appropriately and collected as quantitative data can then be analyzed using statistical methods, allowing the researcher to draw conclusions, make recommendations leading to desired changes being implemented.

Qualitative data, while collected with vastly different methods, is equally exciting and can allow the researcher to gain deep insights into complex issues, even if the analytical methods lead to more tentative conclusions.  Instead of questionnaires, respondents can be observed, interviewed, engaged in discussion.  The researcher can be a part of the process or removed from it.  In the case of the EFMP data, the data collected was qualitative, using open-ended questions, a common method designed to gain access to respondents’ feelings, experiences, concerns,  or beliefs.  When a research analyst calls such data “rich,” she is suggesting that the data is filled with patterns of thought, new insights, words and phrases that bring to life the stories the respondents have to tell.  The job of the researcher is to apply an analytical technique called content analysis.  For the layperson, content analysis is an intensive process of reading each word of every response from each respondent multiple times, by multiple readers, identifying recurring themes, and determining the weight of those themes (how often they appear).  Ultimately, the goal is to take thousands of what appear to be unrelated responses to a finite set of questions, find some pattern in them that links them to each other.  Place these themes and patterns within a much larger context where their meaning can then be used to clarify the complexity and offer recommendations for improvement.

Further questions on both method and analysis can be sent to me at

The Data

For weeks, I culled through the data, reading through it over and over and, when the time came, commencing the gritty task of actually analyzing the data.

The task consumed me.  Sleep eluded me.  I forgot to eat.  All I could think about was the data.  The words of the families came to life, I could hear their voices, see their images and, all too often, felt their pain and struggles.

At one time in my life, we were an EFMP family.  It was difficult.  Five posts in eight years, all east of Interstate 81, allowed me plenty of time to get to know EFMP rules, regulations, policies and failures.  Jack was diagnosed at Fort Bragg in 2003 with autism, we left the Army recently out of Fort Myer EFMP.  Fort Bragg to Fort Drum to Carlisle Barracks to Fort Bragg to Fort Myer. . . .I look back at them now and remember each and every EFMP person.  Fort Bragg was the best the second time around (they still get my award for BEST EVER EVER EVER!). . . .Fort Drum. . .worst ever. . . Fort Myer. . . .first joint base. . . .Carlisle Barracks. . . .so small, made life so easy.  But, if I look at each one of them, we were at different points in our lives, too, and now, that is part of the story.  And, as I examined the data and began the process of placing it into context, I could see why those labels were so easy to assign.

In other words, as I performed the analysis, I could clearly see the multidimensionality of both sides of the EFMP problem is what makes it a nearly insurmountable challenge for DoD, for EFMP families and providers.

Services and the Exceptional Family Member Program

EFMP, believe it or not, is a service offered to all service members by the Department of Defense.  Being enrolled in EFMP is a bit like buying insurance. . . .turns out you might need it, but if you have to use it, the news is probably not good for you.  And that last part is what makes it an “undesirable” service for so many service members.  For a very long time, service members lived with the perception that enrolling a family member into the Exceptional Family Member Program meant that their military career was in jeopardy.  Given that an EFMP designation could possibly impact future assignments, PCS moves or promotions, service members viewed enrollment warily.  Unfortunately, if you or your child needed to be enrolled in order to receive necessary behavioral, educational or medical services, EFMP was a “mandated” option.

As a service, though, wanted or not, there are some principles in play that cannot be ignored.  First, services are intangible, inseparable, heterogeneous, and perishable.  In the world of EFMP, here is what those principles mean.

When you engage with anyone from EFMP, what do you get? And, when I ask you, “what do you get?” I mean, physically, what do you get?

1.  Paperwork:  lots and lots of paperwork.  Do you understand it?  Is it easy to read?  Do you know what to do with it?  Were directions provided?  Pictures?

2.  When you go to their office, is there a place to sit down?  If my experience with EFMP (or any agency on a military post or base, for that matter) is any indication, the chairs are uncomfortable, unmovable (as if I would even consider taking them with me), the coffee is cold, old and tasteless (if there at all), brochures offer little to no meaning, and the television is tuned to some channel with a sign indicating that the channel is not to be touched without assistance.  Am I close?

Intangibility is inevitable with services:  it exists along a continuum from absolutely no physicality present to physical goods accompanied by some level of service (simplest example is dinner at a restaurant: food with service attached).  But without a physical product, or some indication of it, how can you evaluate how well it is working?  What does this have to do with comfortable chairs, paperwork and ambience?  More than you would think.  People need physical contact with even the most intangible services.  Why do you think so many businesses give out pens, calendars, crazy stress balls with the names of their businesses stamped on them?  Tangibility.  I’m not suggesting that pens and calendars are the path to connecting with EFMP (although, stress relief balls may work), but there are many ways in which the first contact with the program can be more comfortable, welcoming, warm.  Because, chances are, if you are there, your life is already tough enough.  Tangibility becomes especially important because it is impossible to know if an intangible service is working.  But when it fails to work, you know it and you are mad.

Inseparability is the source of much that can go wrong with any service and EFMP is no different.  Unlike the IPhone I purchased this past weekend, with a service I am actually present in the production of the service.  Watching Jack and Ellie getting their hair cut this past weekend, I had to participate (as did they) by suggesting to the stylist how much should be cut.  In the case of Jack, I had to quickly train the stylist how to deal with an autistic boy who hates to have his hair cut.  I also had to teach my children how to engage with the stylist:  sit still, don’t argue over hair length (that would be Ellie), let her know if the water it too hot or too cold.

With EFMP, you are also part of the service production while simultaneously consuming the service.  How many times have you moved to a new post, arrived at EFMP to reset your respite care and found that you didn’t have the correct information, had somehow lost a referral or were told that you had zero chance of receiving ABA services in the next thirty days?  Retracing your steps, you remember that you did everything the same way you had at your previous post.  You knew the routine and had followed the blue print.  Still, you had come up empty-handed.

If this has happened to you, you can partially blame the service failure on the inseparability principle.  In order to arrive at a satisfactory solution encounter, both parties must participate equally in the production and the consumption of the service.  Lack of knowledge about how to participate sets the family up for failure.  One of the key themes from the data dealt with this problem.  Not only was there no consistency in the application of the EFMP policies across the Air Force, Army, Marines, Navy, Coast Guard, active duty, guard and reserve units, but there was a clear lack of consistency between posts and bases, making things like PCSing a nightmare that seemed to have no end.

Heterogeneity is the third principle that comes into play when we look at the challenges we face with EFMP.  Anyone who has been touched by the military has argued against the “cookie cutter” approach so often taken by any type of programming available for families.  Even within the same offices, families enrolled in the problem often find it is difficult to get the same answer from more than two people twice.  Consistently, the heterogeneity of the EFMP employees, across services, posts/bases, and even within offices, showed through the data enough to suggest that most encounters were not only difficult, but acted in such a way as to create negative expectations for any future encounters.  Creating negative expectations had a profound effect on the interactions between families and service providers, often leading to a downward spiral where any possibility of service salvage went out the door.

Finally, all services are perishable.  They have zero shelf life.  Can’t use them today?  They can’t be saved until tomorrow.

At first look, the perishability of services seems less impactful on the entire EFMP program than the other principles.  Yet, the size of the enrollment at the larger posts (Bragg, Hood, Lewis, Schofield Barracks, Military District of Washington, all Army, but it’s my perspective. . . .happy to take insight about other services, see email address above) all mean that you have volumes of people needing access to a very finite number of EFMP employees.  Many types of service industries have ways to manage the perishability factor.  Airlines use yield management pricing:  fly off-peak hours, typically, fly cheaper.  Plan your flights far in advance, airfares are lower.  In other words, airlines can motivate you to commit to filling their seats by altering price, something they have determined to be important in your decision-making process.

But what about EFMP?  What control do they have over managing your demand for the finite number of hours they can provide?  Think about it this way:  when is EFMP busiest?  During PCS season.  When, typically, do most families PCS?  Spring, summer. . . .maybe early fall. . .sometimes over the holidays.  Is there anything EFMP can do to increase the hours of the day that they work?  No, but they could increase their man hours per day by having more of their employees focused on PCS types of activities or asking for their higher headquarters to staff them more heavily during those seasons.

What happens when you go to the EFMP office?  Your first signal is to “sign in.”  From my experience, I would rather have my eyes ripped out of my head than try to sit with my son waiting for ANY length of time for a meeting.  Could I possibly avoid this situation?  Sure, as part of the service production, I could leave him home. . .but, wait. . .I am new to the post, I know no one to watch my special needs child, my husband has already signed in to his unit and is already working and, oh yea, the whole reason I am AT the EFMP office is to set up respite care.  Is there any solution to this problem?  There is, but it takes an out of the box approach and the first step is acknowledging that perishability is the elephant in the room and how are you going to work around that.

In the end, the longer I wait, the more frustrated I become, the more likely my child will act out, the shorter my fuse.  Equate that with my counterpart with whom I am going to be meeting once I finally reach the hallowed halls of the EFMP office.  I am probably the fifth or sixth person to show up in the office today.  Chances are that I am missing at least one piece of my paperwork, not because I intended to do so, but I didn’t need it at my last post, so it never occurred to me that I would need it at this post.  The closer to lunch, give or take an hour, the EFMP rep is going to either be starving and I am the person standing between her and lunch or she has just come back and the phone call she received over lunch from the school where her OWN child attends has told her that her evening is going to be spent doing something other than taking care of herself.  She is in no mood to be berated, you are in no mood to be told “no” and, before you know it, what could have been a fairly good start to a working relationship has become a throw down with names and ranks being dropped everywhere in sight.  She has heard it before.  You have said it before.  You threaten to go to the chain of command.  She is already thinking about the phone call she is going to get from someone tomorrow.

After reading thousands of responses, I can readily tell you, this is how it starts.

I can also tell you that it doesn’t have to end that way.

The data I analyzed exposed many themes about the EFMP equation:  families, providers, leadership, challenges, outcomes.  Thanks to this data, I have a story to tell.  Thanks to twenty plus years of studying, researching and  teaching Marketing and Services at top universities across the United States, I have context in which to place this data that offers perspective and recommendations for a way to approach some of these challenges.  With my partners, a five-stage study program has been developed. . . . if the leadership is willing to listen.  They’ve been told.  This information and these recommendations were presented in December 2012 to military leadership in Washington, DC, so they have been told.  Whether they choose to listen is the question.

In the end, though, here is what came out. . . .after reading thousands of responses from over 500 respondents who came from all ranks (full disclosure:  no respondents in the study indicated that they held a rank of O7 or above), all services, posts and bases across the country, with different reasons for being enrolled in EFMP. . . who were Active Duty, Reservists, National Guard, retirees, caregivers, spouses, Service Members, or enrollees themselves, here is one general theme that emerged over and over and OVER again:

EFMP demonstrates no consistency across services, across posts/bases, across states, communities and ranks.  The vocabulary used to describe exceptional family members changes across the different services, the accessibility to programs are a function of the environment outside the control of the Department of Defense.  Reworking EFMP is going to need more than a change of resourcing, it is going to need a significant paradigm shift.  Until then, nothing can really change at all.

©LeslieKDrinkwine,Ph.D., 2013. All material by Leslie K. Drinkwine, Ph.D., and subsequent studies published under Education Research Consultants, LLC is the copyrighted property of the author.  Ideas presented in this material are the intellectual property of the author and are protected under federal laws of the United States of America.  Any use of this material must have the expressed written consent of the author.  The author can be contacted at


Ready, Aim, Fire. . . . . .

Fire at will.

Chaos is reigning.  The fog of war is thick with anticipation.  As the sniper rounds the corner, he spies his target.  Assuming the position, he whips out his weapon.  Ready, aim, fire. . . .

And pee rains down. . . . the target is the toilet and, for the millionth time, my son has missed his target.  I know this because I follow him into the bathroom as he runs out, returns to his war with Godzilla on his computer, and proceed to flush, also for the millionth time.

Over the years, like so many families, we have found “appropriate” names for those things that we don’t want to discuss in public company.  “Crotch” has been replaced by the ever appropriate, if not cryptic, “wee” and weapon as been substituted for penis.

Hey—when you have a kid who is a man of few words, you at least want those words to be appropriate for all kinds of company.  I spend enough time in the assistant principal’s office at school over Jack. . . I don’t need to add “inappropriate language” added to his list of offenses.

I spend a great deal of time delineating the ways in which my son is different due to autism.  He doesn’t verbalize words, preferring instead to use a low, rumbling bellow, not unlike the sound made by the alligator that lives in the lake behind my mother’s house.  He didn’t get potty trained until he was five. . . the same year he gave up his gink (the name my family used for “pacifiers”).  While I would like to take credit for both of these achievements, the potty duty was left to his aide at school in New York and. . . .well, I guess he was waiting for Elle to give up her bottle (which also occurred at the age of five).  What can I say? My kids are, like their mother, late bloomers.

Given the many ways in which he is different from other boys of his age, I made the assumption that the missed target practice was a function of autism.  For those of you who have boys the same age as Jack, please don’t misunderstand me when I express wonder at how your children behave.  You see, I have not actually ever seen a normal boy child.  Both of my nephews, by blood, are on the autism spectrum.  Like birds of a feather, I tend to flock to friends who get my situation.  When faced with the behaviors of the neural typical (that’s how we refer to your children. . . .), I’m reminded that we won’t be playing soccer, football, or executing complicated gymnastics.

Years ago, when I began the Army Wife chapter of my life, we lived in Italy.  Life was incredibly good.  Surrounded by amazing friends, gallons of vino and amazing shopping filled my soul.  For the first time since leaving New Orleans, I felt alive and open.  Despite having no children, I loved my friends so much that I made it to the bus stop nearly every morning.  In our very own private compound, we would huddle next to the dumpster where the kids of the neighborhood patiently waited to make the short journey from Villagio to the school on Caserme Ederle in Vicenza.  Standing in our housecoats or pajamas (all except, that is, for Audrey, who never walked out of her house without looking like a high fashion runway model. . . . even in pjs, she looked like something that Stella McCartney would want to drape with gorgeous fibers), we would sip our coffee and make our plans for the day.

Like clockwork, there was that one mom who would announce each morning that she was going in to clean the bathroom.

Now, have I mentioned that I am a late bloomer?  At one time, such a hedonist (note, that is not the same as a heathen) was I, that I couldn’t imagine cleaning a bathroom.  In fact, the last time that I cleaned my own bathroom had been in college.  Even living in Vicenza twenty years later, I not only had a lovely woman who cleaned my entire house, but also washed my clothes, all for the small price of 80,000 lire (about $40 at the time) and a good sandwich for lunch.  In fact, until this year, I had someone taking care of that activity twice a week.  So pathetic have been my attempts at housekeeping, that my cleaning people in New Orleans would even cook for me.  Interestingly enough, they actually just left me the leftovers of what they had eaten from my refrigerator.  They also used to clean my house in their underwear and, oddly enough, they were not married to each other.  And, no, I am not kidding.

But that morning in Vicenza, as we took our morning walk with my sheepies, I asked Mitz about the bathroom cleaning.  “Who cleans their bathroom every day?” I wondered aloud.  Mitzi sighed heavily, in that way she always did when I would ask or say something so patently stupid that it was as if she need extra oxygen in order to formulate an adequate response.  Mitzi was (and remains to this day) my muse for being a stay at home mom and wife.  Even a decade later, I still plan my day as if I were following a recipe she had recommended.

“Still,” I asked, “why does she clean the bathroom every morning?”

When Mitzi would begin an answer to another one of my questions, she would take my hand and, in a voice that still sounds like a happy melody that I never want to leave my head, she would look directly into my eyes and begin with “Les, you know I love you. . . .”

The “you know I love you” also meant that I was about to get a life lesson. . .something that had been missing in my previously decadent and hedonic life.

“Les, she has six children.  Can you imagine what it is like to have six children use the same bathroom while they get ready for school?” she implored me.

Well, no, I didn’t.  And, despite the recent embracing of my June Cleaver persona, I still don’t.  But now, I know that I don’t want to know.  I know this because I have Jack and Elle.  Every morning that I walk into the bathroom where they prepare themselves for another hard-at-work school day, I want to throw up my hands in defeat.  What kind of hell could come from six children using a bathroom?  Maybe there was a good reason for cleaning bathrooms every morning.

I have a sister and two step-siblings.  Growing up, it was just my sister and me.  It wasn’t until my mother remarried a man with two small children (ages 8 and 3) that I ever had a brother.  Given the circumstances under which we all came under one family umbrella, I guess it is not that surprising to say that my mother and I were actually at the hospital the day my brother was born.  Yes, we are that kind of family.  My mother and my step-siblings’ mother were best friends.  My father and step-father were also best friends.  Not only were they friends, my mom worked for my future step-dad, she mediated the fights he had with his first wife, they all took vacations together.  Somewhere, along the way, somebody must have yelled “Chinese Firedrill” and there was a lot of breaking and reconnecting going on.  Thus, I gained a younger brother, by 19 years, and a younger sister, 14 years younger than me.

Talking to my mom, I mentioned the problems we were having with the weapon and the missing of the target during battle.  Waiting for another discussion of how my child was different, she surprised me.

“All boys do that,” she said in that tone of voice that she uses when she wants to remind me that, at the age of nearly 50, I still need her guidance and advice.  “Really?” I asked.  “They all do that?”  Never sure that the advice she is giving me is the truth or some nonsense she wants me to believe (we’ll get to that topic later), I brought the subject up with some of my friends who have neurotypicals.  They all agreed.  It’s a boy thing.

I spend so much time thinking about how Jack is different from other boys his age that I sometimes make the incorrect attribution that all of his behaviors are autism driven.  Sometimes, it appears, that he isn’t that different after all.

I would definitely think more about this conclusion, but I have a bathroom or two to go clean.

The World is Filled with Eccentric People

And three of them live in my house.

As I sit down this morning to cleanse my brain of all that has filled it this weekend, I begin by taking a very deep breath.  While I would like to think that all of the strangeness and craziness in my household this weekend is due to Halloween, a full moon, or something else from the universe, I must grapple with the fact that we are just different.  Not that anything happened that surprised me, but it was the bulk of the craziness that raised the situation up to radar level.

For the record, I have never, ever been a Halloween person.  Even when I lived in New Orleans, land of the voodoo and ghosts or even here in DC, land of the spooks, I have never embraced Halloween as my holiday.  I am more of a Thankgsiving or Easter kind of girl.  After my time in NOLA, I added Twelfth Night and Mardi Gras to my repertoire.  That B asked me to marry him on the Feast of St. Stephen or Epiphany sort of reinforced that I had chosen my holidays wisely.  Cover me in beads (hey–I lived in the Garden District where Mardi Gras and Carnival are family events. . . .) and I am happy.  Ask me to dress up as some type of character and I take off.  With a sense of irony, I did dress up as the Queen of Hearts one year. . . .and the one friend who holds the copyright to that picture knows that tagging me on Facebook would not bring me happiness. 

All that aside, I live with a bunch of people for whom Halloween is a MAJOR event.  Given that Elle is a root, her love of Halloween can easily be traced back to my mother who decorates her home for every holiday as if there were never going to be another one.  Beginning with the first delivery of the Chasing Fireflies catalog, filled with expensive and interesting costumes (yes, the Queen of Hearts thingy came from there. . .), sometime in August, Elle begins her strategic planning process.  Figured into her proprietary algorthm of costume choice is what she has been in the past, what she thinks others will be wearing and what her statement will be.  The big unknown this year is how people in our new neighborhood participate in Halloween.

It was exactly one year ago this past week that we found our new ‘hood.  Breaking away from our original plan on where to live, we found THE house for us (as in the right house for us right now) in a suburban locale.  Driving through at night, we felt sure we had found a lasting home as we saw one house after another, decked in spider webs, ghosts, goblins and orange lights.  This would be the place for us and our roots.

Elle evaluates everything and how a town pursues a Halloween strategy is one measure of that town’s performance.  Last year, we spent the holiday with my sister who lives in a quaint little town just west of the Blue Ridge.  Halloween in our old ‘hood at Bragg was not unlike the Army’s surge strategy:  thousands of children (and adults) descended on the four or five blocks that is the Normandy Housing Area.  Given that the regular kid population was probably less than 100, the huge number of trick or treaters always took new residents by surprise.  Word would spread, too.  Intelligence on the houses with the best candy would be passed by word of mouth. . . leaving those of us who chose an extra special beverage for the evening looking sadly at our watered-down drinks as the hoards massed on our sidewalks.  We decided that we would take a more leisurely approach to the holiday last year. 

To say that the Halloween strategy developed by my sister’s town fell far short of Elle’s expectations would be an understatement.  The town’s tradition was to have trick or treaters parade up and down the two blocks that is the “historical” part of downtown. . . . empty store fronts, some filled with “antique treasures,” others representing the occasional lawyer or insurance agent, with a few banks thrown in for good measure.  People would line up at one end of the downtown and, like lemmings headed for the cliffs, we moved from one candy location to the next.  Elle was quiet during this part of the festivities, but her disappointment was palpable upon opening her bag of treats.  Searching desparately for the few pieces of chocolate (the mark of a good candy provider), she dumped the entire bag on the ground and announced that this night had been a phenomenal failure.

Last month, when my sister’s house was burglarized in this very same quaint town, Elle delivered her final verdict on that night.  “I knew that I didn’t like that town,” she told me.  “You can tell alot about a town by how it does Halloween,” she continued.  “And that was one of the worst Halloweens ever!”  It seemed that the burglary had validated what Elle already knew:  bad Halloween, bad town. 

For Jack, every day is Halloween.  Never one to adhere closely to a calendar, unless there is a playdate with Ben the Boy scheduled, Jack doesn’t really give a rat’s behind about Halloween.  Part of his eccentric nature,  Jack loves to act out the movies he watches and the books he reads.  You can learn a great deal about Jack if you just check out what he is watching on You Tube or on DVD.  For the last few months, the favorite movie has been “The Toys That Saved Christmas.”  Not one of your star Christmas specials, it just goes along with Jack’s taste for the obscure.  As a result of his watching, he is incredibly creative in putting together costumes.  Why wait for Halloween and only do it one time of year?  Jack is an equal opportunity costume fiend.  Any day is a good day to dress up as something else. 

For the past few months, as the sounds of the “Toys That Saved.. . .” wafted through the air, Jack took to wearing his great-grandfathers brown fedora, his forever pajama bottoms and an old nightgown of Elle’s in a leopard print.  B and I would look at each other and try to figure out exactly what he was trying to tell us.  Part of the play acting is to include all of the characters of the movie in his play.  Given that we could have made millions if we had bought stock in Toys R Us years ago, we have plenty of toys from which to choose.  And, apparently, we had all of the makings of the cast of characters for this particular movie.  But what was the deal with the hat?  The movie and costume clearly were related, but we just didn’t know how.  Finally, I endured on watching of the movie.  Suddenly, it was quite clear.  Jack was playing the lead character, Mr. Grim, this movie’s version of Scrooge. 

Not unlike the year that he was obsessed with the second Night in the Museum movie when he created a costume to represent Octavius (pj bottoms, red ladybug rainboots, swim trunks over the pjs, a red ladybug raincoat to represent the cape, and a plastic Roman legionnaire’s helmut and sword), I learned how to communicate with Jack through his play acting.  The night of the Christmas pageant at his school, “Christmas at the OK Corral,” I seemed to be losing the battle to get him dressed for the event.  Throwing my arms up at my futile attempts to get him to understand what we needed to do, I cried out “Jack, you can’t be dressed as Octavius for tonight.  Tonight, you have to be Jedidiah!”  With that, he ripped off his cape, threw on his blue jeans and a shirt and found the bandana that I had bought for him.  Sometimes it really is the small victories in the world of autism.   

These days, the kids no longer wear their costumes to school.  B and Elle decorated the outside of our home. . . . . last night. . . . which I will have to take down tomorrow night.  Lucky me.  Elle is going as Poison Ivy.  Her rationale is that she has always represented good in her costume choices of years’ past.  This year she is going for a more evil role.  B has bought a policeman’s costume for Jack. . . looking at the fake handcuffs, I think that this will not end well.  My mother is flying in for the Halloween. . . .having just made this decision three days ago.  She won’t be here for Thanksgiving or Christmas, but miss Halloween?  No way.

Getting the kids to school this morning, I thanked my lucky stars that I woud not have to deal with costumes this morning.  It wasn’t until we were out the door and walking to school that I began to really look at what Elle was wearing.  Leopard print flats, white tights with pink and purple stars, a hot pink-spaghetti-stringed tank top covered by a too-small black, pink and white unironed plaid shirt, all of which was capped off by the white with large black polka dot taffeta mini-skirt.  Wishing me a very happy halloween, she ran ahead to walk with some of her girlfriends.  Too late to do anything about it, I realized that Elle had tricked me.  She was dressed for Halloween in her favorite costume.

Elle went to school as a Glamour Don’t.

Crossing Bridges

Like a bridge over troubled water, sings Art Garfunkel.  I will comfort you. 

The early days after the diagnosis of autism, three to four years into the autism journey, I continued to seek the magic pill that would force the autism thief to return my child.  Hand him back, I would say to the thief.  He doesn’t belong to you.  He is mine.

But by the age of five, Jack remained silent.  There was no comfort.  And so it was, five years ago that I found my way back to DC, back to the Beltway, back to Alexandria.  It was hard to go back there.  The first time that returned, in 2003, B was in Fallujah.  Everywhere I turned, I saw his face.  It was my first deployment with B and I was there to visit one of his NCOs at Walter Reed, sick with a brain tumor that would eventually take his life.  When Jack would not go to sleep that night, I put him in the car and drove him down to Mount Vernon and back, the rocking of the car offering him peace, respite and, finally, sleep.  B’s heart sat quietly next to me.

Alexandria is my momentary destination, just an intermediate stop.  We are headed to Johns Hopkins’ Kennedy Krieger Institute’s Center for Autism Related Disorders.  A big name for a place that does very big things.  It is the center of the universe for those of us whose children have been stolen in the night.  It is our first visit and my expectations are high.

On that day, returning to Alexandria and Old Town is routine.  No heart palpitations. . . no ghosts.

Waiting for me, though, is THE bridge. 

Bridges have always had role in my life.  Bridges that took me from Texas to Louisiana and the promise of a new life.  The bridges over the Atchafalaya Swamp where I sought solace in graduate school.  The bridge over the southern edge of Lake Ponchatrain, that little rise in the road, just past the exit to LaPlace, when Interstate 10 appears to sink into the water. The Crescent City Connection, where the foghorns emanate from crusty old tugboats, pushing barges from far up the river.  The Huey Long Bridge that I could see from my Tulane office window.  The one that took my breath away even before I gathered the courage to cross it, just to say that I did.   The scary bridge I crossed over the intercanal waterway, headed out of Louisiana for the final time, my soul standing at its foot, refusing to accompany me.   There’s the Tappan Zee Bridge near West Point that appears in my nightmares, the waters of the Hudson River threatening to drown me. 

And then there is the Woodrow Wilson Bridge. 

Since 9/11, I have never been able to cross the Wilson Bridge without being immediately taken back to the moment that I heard of the first plane crashing through the World Trade Center.  On September 11, 2001, B and I were in the midst of our nation’s capital.  I was officially a little more than three months pregnant with our first child and, working in Maryland, the bridge was part of my daily road map.

It was my first semester to teach at UMD and my teaching “assignment” was to be the advisor to nine different groups of second year MBAs.  With clients as diverse as a pro bono community outreach group to PepsiCo, Lehman Brothers, and NPR, I was guiding sixty students through the process of providing consulting services to these companies.  Steering students through projects was my strength, my comfort zone.  On that amazing day in September, three groups were on my agenda, with the pro bono group being first.  Listening to WTOP as I crossed the bridge that morning, the report of a plane through the first tower was making news.  Still in the infancy of the attacks, the reports were uncertain.

My schedule that day was pretty harried. .  . meeting in Seat Pleasant at 9am, telephone conference call with PepsiCo and, finally, another conference call with Lehman Brothers at noon.  Even back then anyone who knows me well accepted that I couldn’t keep myself on time. . .I’ve always had the false impression that I can do exponentially more things in an hour than are even physically possible.  So, it came as no surprise to anyone (including my students who had been adequately forewarned) that I walked into the Seat Pleasant meeting nearly ten minutes past its starting time.

Enter late, leave early.  That was the plan.

Since that day, I have tried to remember each and every detail:  where I was, what I was thinking, with whom I spoke, and how I felt as I carried that baby in my body and my heart.  I have difficulty reconciling the two timelines:  mine and that as reported by the media.  In thinking back to that day, I remember seeing the smoke from the Pentagon drifting high into the sky, but whether I saw it on the way to work or back home, I still cannot be sure.  I know that the Pentagon had been hit by the time that I reached my office, because the phone calls had begun.  B was not at his desk that day in the Pentagon. . . a desk that was destroyed by the ensuing fire, but sitting in a room on Fort Belvoir.  It would be hours before we saw each other much later that afternoon.

On the 12th day of September, I had an appointment at Bethesda.  Because I was an “old mom,” I was marked to have more tests and ultrasounds that the average pregnant woman.  This would be my first ultrasound and I hoped to learn the gender of my child.  Still intimidated by the traffic, the metro still a novelty, I loved the idea of taking public transportation, pretending to be urban, even if I lived in the suburbs. 

The train car was quiet, as if an entire population had been stunned into silence.

Riding high above the ground, the metro rambled and jolted along the yellow line.  Air traffic had ceased, so there was no need to even slow down for the regular airport stop.  There were no planes flying across the nation.  Across the river from the Capitol and the White House, operations had been shut down.  Similarly, nothing was stopping at the Pentagon that day.  Traveling beneath the bowels of the Pentagon, the smell of smoke and soot seeping through the vents left me with a feeling of vulnerability that I hadn’t ever expected to feel in my own country.  Everywhere you looked, people covered themselves with a blanket of silence.

It was on that day at Bethesda, that I learned I was having a boy.  His name would be Jackson Montgomery Drinkwine. . .Jackson in honor of Stonewall Jackson. . .Montgomeryfor Field Marshall Montgomery.  A big name for a little boy on whom we pressed our future.  He would move mountains, he would build bridges.

Later tests at Bethesda would prompt me to ask the question about autism.  Could they tell if my child was going to be autistic?  Already my greatest fear, I was ready to make a deal with God.  Give me anything, but please spare me the encounter with the thief.    

It is that same child with whom I crossed the Woodrow Wilson Bridge that day. . . .my five and a half year old autistic son, Jackson.  As he sat quietly in his car seat, I gently reminded him of our history with the bridge.  Work on the expanded span had just started the summer we moved there.  Now, it was completed and, as we drove high about thePotomac, I showed him familiar landmarks and talked to him about them as if I expected him to agree with me that, yes, the river does look different when we are so much higher above it than before.  No, I don’t like the fact that it is still a drawbridge.  Jack says nothing and simply gazes out the window beside his car seat, content, once again, to let me do all of the talking. 

The voices of Simon and Garfunkel resonate in the background.  Sail on silver girl.  Sail on by.  Your time has come to shine.  I have become Jack’s bridge to the world.  Like a bridge over troubled water, I will ease his mind.

Jack Finds a Friend

Jack has found a friend.  We call him “Ben the Boy.”

Anyone who knows us well knows that we have thrived in this world because we have some of the most amazing friends.  Elle, my little social butterfly, has been raised, mostly, on military posts where friends become far more than neighbors, they are family.  Her childhood has been defined by Flamingo Fridays, playdates, parks and freedom.  Since moving to Northern Virginia into the world of civilians, friends have been harder to find.  Trying to give her some visualization because, after all, as my mini-me, she loves creative visualization, I have used the “bloom where you are planted” cliche.  When you move onto a military post, especially at this juncture of B’s career, you already know people. . . the garden into which you are planted is filled with the perennials you have grown over the years.  Moving to a new neighborhood, outside the gated community that is a Fort Bragg or any other post, is like being the new annual in the front yard.  Are you going to make it?  Will you have enough sunshine. . . .does this soil allow you to grow?

With Jack, his garden is a lot more empty.  He is sort of like a butterfly bush.  The butterflies visit, but their time is sporadic and they move on quickly.  Jack’s garden comes with lots of thorns, making it difficult to navigate the foliage.  But here, in NoVa, Jack has found a fellow branch, if not yet a complete bush.

We have found Ben.

One of the platitudes to which I subscribe is that God brings the people you need into your lives when you need them the most, but haven’t figured out that you need them.  Sort of a Steve Jobs kind of thing. .  .bringing you products you didn’t know you needed, but suddenly find yourself unable to function without them.  We needed Ben.  Desparately.

It began with a welcome meeting for a troop of Brownies.  A Sunday evening.. . about a month ago. . . .just down the street.  Elle, my social child, has wanted to be a Brownie for so long and I have resisted.  Our conversation usually goes like this:  “Mom, I want to be a Brownie.”  “Elle, why do you want to be a Brownie.”  “Because you get to sell stuff, like cookies.”   I look down at the scale and realize that I weigh exactly what I did the day I delivered the little socialite and think to myself, no way. . . . selling cookies DOES NOT sound like something I want to think about.  But, I look at my daughter’s face and decide that we will try this activity this year.  So, off to the mom’s meeting I go.

I’ll admit that I occasionally wear my martyr hat when it comes to my kids.  Jack gets me out of a great many activities.  It is sort of like having the plague. . . sorry, can’t attend your meeting today. . . Jack is acting up.  You can imagine.  Arriving at the meeting, my martyr hat tucked into my bag of stuff that I always carry (sketch book, calendar, flask. . .ok, not really on the last one) and settle into the dialogue taking place.  For any number of reasons, I pointedly let everyone know that I am not going to lead anything this year.  My kid can participate. . . I’ll write any check. . . .just don’ t expect me to plan anything.  Then. . . I let the words fall seamlessly out of my mouth. . . “my son (cue: martyr hat placement on head) is autistic.”  Silence grips the room as I get the look I’ve been waiting for. . . . a tinge of sympathy and a slight movement away from me as if I just announced that I carry my own vial of anthrax and I am not afraid to use it.  Ahhhh. . . off the hook for this one.  Until. . . .

Some cheery voice from the back of the room says (did I mention the descriptor “cheery?”) “really, my son is autistic, too!”  Damnit.  I’ve been exposed.  I look up and realize that not only is there another plague bearer there, but that she is the co-leader of the troop!  I feel my face flush as I shamefully realize that this woman not only has an autistic child but, I learn, has three children, is not only a troop leader for her daughter, but also engages in Boy Scouts, has taught CCD at our church.  My head hangs down. . . . as I quietly fold my martyr hat and tuck it back inside my purse.  Why, yes, I would love to help lead a meeting this year, I find myself telling the group. . . .whoo hoo. . . who’s ready to sell cookies?

Right on time, though, my phone gets a text.  Jack is ready for bed, calling for me, and the adult I have left in charge is unaware of how to stave off the impending meltdown (adult in charge = father of said child).  Grabbing everything in my bag (wishing Ihad brought the flask), I quickly excuse myself and start for the door.  But I can’t just leave.  No, this conscience thing that I have developed stops me before Iget to the door and I find the cheery mom.  I have to give something back. . . so, I offer to let her child come to my house while she leads the meetings.  She immediately agrees and says that we will work out a plan.  I think about changing my phone number. 

Skip ahead to several weeks.  It is the first meeting and, with no babysitter in sight, I reluctantly take Jack across the street to the elementary school where the new Brownies are going through the investiture ceremony.  Hoping that we won’t be staying long because I really don’t feel like wrestling with my 90lb in front of a bunch of perennials. . . being the new annual on the block.  In hope that Jack will behave, I have brought the IPad for movie watching.  Sneaking in, past the group of girls dressed in sashes and vests, Jack and I sit down in a corner of the room.  Like a moth to the flame (yes, cliches are big for me today), suddenly, there is another little boy sitting next to me.  He, too, has an IPad, but seems far more interested in what Jack is watching.  I sit between them and feel that familiar weight against my body as both boys lean against me, intently watching Igor on the litle screen.  Whereas a typical child at this age would probably hold back from any sort of closeness to a new adult, I have found that the cuddly autistic children have no such filters.  Have arms, will hug.

His name is Ben and he is absolutely as quirky as Jack and just as adorable.  Making eye contact with his mom, I feel myself shed my annual status and realize that, like the IPhone without which I can no longer exist, she is exactly the product I needed, but didn’t recognize at first.  Staring together at our boys, we agree that we must try the “playdate.”  We schedule it for the next week.

Not sure how Jack feels about it, I don’t talk much about Ben during the days before the playdate.  But the day arrives and I recognize that it is my turn at bat.  Step up to the plate and be a member of the team.  But, wait. . . I’m an old mom and I need my afternoon nap.  Jack has become accustomed to me sleeping while he plays on the computer.  He finds my favorite blanket, puts it over my shoulders, kisses my face and tells me goodnight. . . .even if it is 4pm.   Dozing, under my Afghanistan wedding blanket (you must have one of these!), I see eyes staring at me.  It’s Ben.  Jumping out of the chair, I look around for his mom, Jack. . . .some evidence that this is real.  The clock reads 4:15.  That means that Ben has been in my house for fifteen minutes while I sleep.  Well, I might get back to annual status faster than I had planned.

An hour passes and Ben’s mother comes back, Brownie girls in hand.  Scrambling to make some excuse that seems at least plausible, she cuts to the chase.  I saw you sleeping, she tells me, and didn’t want to wake you.  She barely knows me and she left her child with me while I slept.  Interesting.  As we talk, I realize that not only are we both the same types of perennials, but we share the same roots, too.  The boys have played nicely for the entire time.  Jack has decided that he wants to get into the pool.  Stripping to his skin (a common occurrence), he finds a pair of swim trunks and heads for the pool.  Looking at Ben, he offers another pair of swim trunks and invites Ben join him.  Ben, like Jack, strips to the core and puts on the offered trunks.  Like Jack, he seems unaware of front or back, inside or outside of the trunks.  He just puts them on and heads out the door.  His mom and I just look at each other.

Later that night, I eagerly shared the experience with my mom and sister.  Like everything else, they wanted to know how they played together, what did Jack say, does Ben talk, what did they do?  The only answer I had was that they were exactly alike and could not be more different from each other.  What does that mean, my mother demanded.  I repeat one of the phrases that has been told to me over and over at Jack’s school:  When you have met one autistic child, you have met. . . .one autistic child.

But, more importantly, Jack has found Ben the Boy.  Ben is his type of plant and, all of a sudden, this feels like a garden where we can all bloom.

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