Life Through My Daughters' Eyes                           June 2006

 Comparing my children’s coming of age to my own in the sixties and seventies, I’ve seen tremendous progress in how differences are accepted.  I lived a sheltered childhood and didn’t struggle to understand the world beyond myself until just recently. My older daughters, Erin, 17, and Katie 13, have already shown a sharp perception of the differences that can drive a wedge between us and our neighbors. Maybe just growing up in a family that tries to find an understanding of the world beyond our own four walls has been enough to nurture their sense of social justice, or maybe living seven years with their younger sister Rose, who has Down syndrome, has made the connection. Their sometimes joyful, sometimes challenging experience has sparked against this world’s, at times, limited acceptance. They know first hand that she’s a human being deserving of every respect and they see the thousand little ways this respect is denied every day and they burn to fight it every time.

When I grew up in a comfortable, small-town world of white middle-class, mostly Irish Catholic, the challenges that came my way were manageable.  Everybody went to the same school, everybody went to the same church and everybody was white and fully able, or at least everybody I knew.  Life was simple and unfolded according to generally-held expectations and any differences that did come along were pushed out of sight.  Years later, some of the truths came to light. An uncle that was always holding back a mountain of repressed anger finally, after a late-in-life divorce, quietly came out of the closet. A cousin’s bi-racial child found her way back into our family 30 years after being born into a home for unwed mothers and given up for adoption, and the faintest recollection was recalled of my mother’s cousin placed in an institution at birth, possibly due to Down syndrome, the only contact ever with his family was a short visit from a brother on his way to World War II.  The secrets finally revealed dispute the ‘normal’ lives claimed.   

My awareness and respect for human differences has been slow coming and admittedly helped along a great deal by the arrival of Rose in our lives.  I do remember well the person I was as well as the person I am becoming.  I carry both inside of me.  I was the twenty-something year old that would taunt a co-worker’s mistake with, “Now tell me, did you ride to school in a long school bus or a short one?”   Now as a forty-something year old, my wife Cheryl and I are telling our PPT teammates that our daughter with a disability is going to ride to her neighborhood school on the same bus as all her neighborhood friends.  There’ll be no short school bus for us; not in jokes, not in life.  We’re all going to ride the same bus.  We are all going to live together.  Come what may, no temptation will cause me to yield on this newfound principle.

Wisdom did not come from an Inclusion-How-To book that fell out of the sky on the day Rose was born, landing in our laps opened to page one with easy to follow instructions that spoke to our inner consciousness. We’ve learned these lessons in a haphazard, almost always unexpected way that only after years began to fit together in an understanding that applied across all our life experiences. Painfully slow, day to day struggles thrown at our family were sorted out in the rare moments we manage to find for discussion.  We are fortunate to be able to work through these issues with the comfort offered by a supportive and engaged spouse.  The strength of loving adults in agreement is infinitely more determined than any single adult or, especially, any young child trying to connect to their world through life’s first hard lessons. 

Erin and Katie, four years apart, have come to this realization of belonging through the inevitable lonely moments of a child making their way through life’s passages.  Sure, on their best days and ours, when we manage to overcome our petty squabbles, they can come home to the warm conversations of progressive ideas that affirm the natural goodness of accepting all people as worthy.  Those days are special but rare. As they venture into the world of classrooms, soccer practices, sleepovers, lunch table debates, and ever changing friendships they are on their own when unexpected, sometimes jarring, challenges come their way.  I wonder just how many of these challenges Cheryl and I are aware. 

The first shock came when Rose was a less than a year old, just a few months past her heart surgery that shook us all, Erin was ten and Katie was six-years-old.  All three girls were tiny for their ages. Erin and Katie came in the house one afternoon, upset after a scuffle with their neighborhood friends.  They had been playing with the two brothers when Katie made a mistake. The oldest, a nine year-old boy but almost as big as Erin and Katie combined had taken the opportunity to pile on a taunt for maximum effect, “You’re so RETARDED!!!”  Erin has been ready to let this escalating argument pass until this final insult was hurled. All of sixty pounds, cute but quick, she answered with a sharp punch to his jaw.  More stunned than hurt, he headed home confused over the new order of their play rules.  Cheryl and I, still off balance from Rose’s birth and heart surgery, offered little parental assistance beyond settling the immediate issues of who was hurt and why. 

This issue and this taunt is one they have to grow up with, attempting to understand how the “R word” defines them, their sisters, what behavior they will tolerate and who they will and won’t accept as friends. 

As a senior in high school Erin was enjoying her circle of long time friends. They had met as early as Kindergarten and they had grown together, appreciating and supporting each others views. This comfortable connection sometimes ran into conflicts when new faces joined their high school lunch table discussions.  Erin often came home to relay a story at our dinner table of how another student had put down gays or questioned women’s rights or proposed a racial distortion as fact that she had countered with the righteous fury of her sharp rebuttal.  At seventeen years-old, she is already grasping firmly the understanding for all types of people whose rights have long been denied. 

The deepest cut of all came on the day Erin hesitated to share with us her day’s events, all we knew was something bad had happened at school. At first, she wasn’t sure if she could bring herself to tell us. With some encouragement, she agreed to tell us “after 8:00 ”, our family code for after Rose’s bedtime and away from her young ears. 

So that evening Erin told us about her day’s experiences; she had been catching up on Math homework at the lunch, always a struggle for her. A new face, a jock full of Alpha-male swagger, had joined her lunch table crowd.  The conversation had meandered through the usual random teenage topics until, unexpectantly, it had taken a sudden turn toward the center of Erin ’s tender heart. Seemingly out of nowhere, she heard the jock confidently present to his girl friend a tidy solution for one of life’s feared future problems, “We would never have a child with a disability. I mean, if someone knew they were going to have a Down’s child, why would they?” 

The lunch table went quiet except for a few cautious and informed, ‘oh-no’s as attention shifted to Erin .  Slowly Erin raised her attention from her Math book.  If her eyes were lasers there’d be a teenage boy somewhere with two holes burned clean through his skull.  She finally responded with a clear challenge.  “My little sister has Down syndrome.”  She caught herself, tried to find an inner calm, tried to return to her Math, the silence at the table continued, like the calm before a storm. She couldn’t hold back. ”OK, you know what? You’re wrong!” She unleashed a raw emotional torrent, “Haven’t people with Down syndrome suffered enough because of people’s ignorance? They’ve been segregated from their families.  They’ve been segregated from schools.  Why?” She pounded on, flailing at the roots of prejudice, segregation and pain. Personal experience was her language.  “You know what.  You know why some body would want a child with Down syndrome?  Because they want a child!!!”    

Silence again and then an apologetic response, “I’m sorry” from the jock.  Two words were significant in their uniqueness, indicating a rare crack in his arrogance and a small start in understating the world beyond his own experiences.. 

Despite these clashes, in my unscientific assessment of today’s high school, issues of diversity are starting to be addressed and mores students than ever are beginning to respect those they believe to be different than themselves.  The middle school years are different and I am afraid Katie has been bearing more than her share of conflicts.  Middle school students, on either side of the cusp of puberty, are extremely sensitive about their own place in the world and would, all too often, gladly direct derogatory put-downs at someone else to enhance their own popularity before the crowd can turn on them.   And the put-downs and shock-humor of “That’s so retarded!” or “You’re so retarded!” and “You’re so gay” are a prominent part of the vocabulary of these pre-teens and new-teens.  While not socially mature themselves they fully appreciate how to at least temporarily secure their own place among their peers by heaping ridicule on those that have a long history of being outcasts. 

Katie is a unique girl with a quirky sense of humor balanced by a middle child’s peace-making abilities.  In my possibly biased father’s perspective, she could enjoy a very popular school life. But unfortunately the use of the “R word” has been a litmus test that has extremely shortened the list of the friends Katie holds close. 

Katie has seen when her friends have crossed the line; either using the “R word” or other divisive taunts, or teasing kids that are deemed to be ‘uncool’.  She has been struggling to point out the contrast of the many advantages that she and her friends enjoy as white, upper middle-class, nondisabled students of today.  She has tried her eighth-grade best to offer reasons for them to consider a more respectful path.  Admittedly, it’s a difficult age to fight the desire for immediate acceptance of the cool clique.  To Katie’s credit, some have come around to a more positive, diversity-affirming attitude. Those that won’t make the attempt, Katie has simply taken a graceful step back from their friendships and gone on with her life.  This is a situation she has addressed several times in the last year.  Cheryl and I have done our best to offer some coaching.  We have tried to temper her reactions while respecting her conclusions. 

We’ve told her, “That’s no different than how most middle schoolers would act.  This is the year that Napoleon Dynamite has made it even more cool to say, ‘That’s so retarded’:” 

She’d say, “I know but that’s not an excuse.” 

We’d say, “Can you give them a second chance?” 

She’d say, “I already have.”

I’d say, “They could change.  I said things like that when I was their age and I’ve changed.”  

She shrugs this one off, “I know, you’ve told me but…. I don’t see them changing.” 

Years are forever in the life of thirteen-year-old.  “Well, try not to hold a grudge.  Maybe in a few years, in high school, you’ll see that they’ve changed.” 

“Maybe,” she answers, but doesn’t sound convinced. 

Last month Katie came to me, shocked with a recent self-discovery. “Dad, I was looking at my 5^th grade yearbook.  I had written the nastiest comments all over just about EVERYBODY’S pictures!  What was I thinking?  One girl, I don’t even remember who she is, I wrote GAY right across her picture.  Like it was an insult.  What was I thinking?”

“It’s OK, Kate. People do change.” I said.

Time will tell how much change will come and how soon but it’s certainly progressed far through our own lives; through Rose’s sisters, Erin and Katie, through the contrast of the little sister they know and the misperceptions and labels they’ve heard from society.  This is a tremendous life lesson, of far greater value than any of the little lessons of civics or math or biology.  This is the big lesson that applies to virtually every moment of life; don’t prejudge, don’t ridicule, accept and you’ll be accepted.  The connections keep being made, not passive interactions like a pebble tossed into a calm pond with the ripples slowly subsiding before they reach the shore.  This is active, reactive and sustaining, a chain reaction that’s caught and can’t be broken.  There’s a profound intensity to these children’s thoughts and lives.  They’re living in a world that’s teetering, and the fire of change has caught them. These are our children.  Their minds have caught the spark.  At a young and so impressionable age they have learned well life’s big lesson.  They can never unknown what they now know.  They are burning with a passion to change their world.  The fuse is burning, two sisters have caught the spark and made the connection, they are among many of their generation with a sincere growing respect for their fellow human. As a parent, I look forward with pride and hope to the day they will apply themselves to the wider world beyond their school years. 

Their younger sister, Rose, is now just seven-years-old and giving and receiving the open acceptance of her second grade regular-education classroom, many of the same children have been her soccer and baseball team-mates.  They’re still a few years away from the trying social challenges of the middle school years and their own growing adult perspective of how they relate to and affect the world around them and beyond themselves.  The spark that Rose has ignited in her two parents and in her two older sisters by the simple act of living her life full of possibilities will come back on her magnified at least four times strong.  Today Rose is just starting to gain an understanding of what is Down syndrome.  Unlike the rest of her family, she carries the label of discrimination every minute of everyday of her life, clear for all to see like a badge that can never be removed.  I know extra challenges will come her way but I’m very much looking forward to the days ahead when Rose’s growing self-perspective combines with a healthy conscience desire to change the world for the better.  She has two wonderful role models in her older sisters that are starting to blaze the trail ahead of her.  And it all started with a spark.   

Here we are all together with High School Graduate Erin

(photo courtesy of Uncle Joe's cell phone camera)

 We were fortunate to be able to spend a long weekend with all my siblings families in Vermont.  It was an opportunity to relax and enjoy each other's company and, of course, another opportunity for more cute pictures of Erin, Katie and Rose.

We had our last family vacation with all five of us maybe for awhile.  Erin has graduated from high school and might be too busy (or too cool) to join us in the future. Time will tell. But we had a great time at an ocean side hotel in Rhode Island for a week. Including some excellent body surfing weather which is somewhere between a sunny day and a hard rainy down pour.  We had two days post-bad weather that sent large waves to the beach  but kept the crowds away.  Erin and Kate got to experience body surfing in the big storm waves with mom and dad. Rose has to grow a little bit more yet.  And there's was lots of other fun stuff to do when the sun was shining.