Point of View

I regularly spend time treading water, both literally and figuratively. While my son is in school I try to exercise in the SpoFit (http://www.spofit.org) pool. It is my opportunity to workout while relaxing; kind of like golf but without the desire to throw my clubs before the 19th hole. Often my pool time also includes a conversation. My fellow SpoFitters are some of the most interesting people I've had the privilege of meeting. Each of them, including staffers, has their own amazing story. 

As I tread water, I also enjoy observing those around me. One of the SpoFit lifeguards is deaf. While it challenging for us to engage in deep conversations when I'm in the water (I can't get close enough to properly understand her pronunciations), I've learned much watching her do her job. Until I met her, it never occured to me that seeing, not hearing (drowning is a silent killer) is most important to a lifeguard. She sees everything and pays attention to even the slightest movements. She knows where everyone in her aquatics area is at all times and exactly what they are doing each moment. In many ways, I think (her boss agrees) we're safest when she is on duty. I always make sure we make eye contact before I enter the pool because she can't hear the locker room door. When I exit the building on my way to the parking lot I look for her on the other side of the fence and make sure I smile and wave big so she knows how much her work means to me and, because, she is my friend. While these accommodations are very minor for me, they make it easier for her to do her job.

The past 5 months we've spent too much time at the hospital and in doctors' offices. My son the medical zebra is a riddle wrapped in a mystery inside an enigma. Since his birth when we returned him to the hospital 24 hours after his discharge, he has been a challenge for doctors to treat. Unfortunately, during the past decade too many doctors blamed his pain on "autism" and dismissed his pain rather than making reasonable accommodations for him so they could give him much needed proper diagnosis and treatment. His intense head pain was dismissed for 9 years because he can't say, "My head hurts." He threw up for the past 4 months at least 3 times a week (for a month it was every day even while on Zofran) yet he wasn't given the GI consult we requested (not even when he was inpatient twice). A few weeks ago I filed a complaint with several Federal and State agencies asking them to investigate that the hospital discriminated against my son because he has autism and because the hospital would only make reasonable accommodations for him based upon staff convenience and immediate availability rather than pre-arranging reasonable accommodations based upon his needs. We're hoping that will change especially since I cold called the hospital risk management department (yes, sadly I still needed to make the call after I filed my complaint). My son had an outpatient procedure done and thanks to the intervention of risk management, reasonable accommodations were pre-arranged. He did amazing! Funny how that works.

Unfortunately it looks like this is just the beginning. My son has been diagnosed with a few conditions that can't be blamed on "autism" (although they don't yet know the underlying cause) and he requires follow up medical care in several of the hospital outpatient clinics. Reasonable accommodations aren't rocket science. They just require that people imagine someone else's point of view. I have the risk management department number in my cell phone because I realize that some of us have better imaginations than others. I also understand that some medical providers are better than others at working together to provide their patients with comprehensive, coordinated care. However, they now have no choice. Trust me, things will change and my son will get the comprehensive, coordinated high quality care promised by the hospital marketing materials. I promise that I am either going to be their best friend or their worst nightmare.

"I was fifteen years old when I understood how it is that things break down: people can't imagine someone else's point of view." US Supreme Ct. Justice Sonia Sotomayor, My Beloved World, 2013

Celebrating Mother's Day

Sunday we're going to Wendy's for lunch. My son will enjoy his usual regular chicken nugget value meal with root beer. I'll probably enjoy a side salad as I can eat it leisurely in the 15 minutes that currently is my son's attention limit (with the assistance of his iPad). The rest of the day most likely we'll  spend time in the pool (yes it's still cold!) and go for a drive. Maybe we'll even stop at Walgreens. Please understand, I'm not complaining. For my son, sitting down to eat at Wendy's is progress and we will be celebrating on Sunday! As always, we'll enjoy our time together.

I just read a blog post by another mother raising a child with autism who confessed to regretting trying to "cure" her child's autism. While she certainly is entitled to her own feelings, I just don't share them. My husband and I haven't spent the last almost 12 years trying to "cure" our son's autism. We've spent that time trying to find needed medical care, therapies, educational supports and services for our son and will continue to do so until he is a self sufficient, self supporting adult who no longer needs our support and guidance. We don't like the way having autism leaves our son in pain and limits our son's ability to interact with the world and therefore limits his opportunities. We don't like the way it has affected and limited our lives either and if we had a choice it certainly wouldn't be for our son to be chronically in pain, unpredictably defensive toward others (especially us), unable to effectively communicate his needs let alone complex thoughts and with no way yet in sight for much needed relief. When my husband said last night that he "hates autism," he spoke for both of us. If our son had cancer, diabetes, epilepsy (as of a few weeks ago he now has an official diagnosis), HIV, polio, cerebral palsy, was deaf, blind or had any other condition that severely limited his life, we'd hate that too. We understand that our son's autism is unique to him and that Autistics (as they prefer to be addressed) who can effectively communicate their thoughts to the rest of us celebrate their biodiversity and embrace their differences. To them we say "that is your right" just as it is our right to hate our son's manifestation of autism for what it does to our wonderful, amazing child. 

So, while we recognize Autistics' right to their opinions and their right to speak for themselves and we even agree that some national and local autism organizations patronize Autistics rather than empowering them to be self advocates who are in charge of their own lives as much as they are able, my husband and I will continue hating the autism in our house. We will continue finding needed medical care, therapies, educational supports and services for our son while empowering him to advocate for himself as much as he is able until he is a self sufficient, self supporting adult who no longer needs our support and guidance. We readily admit that we may never strike that perfect balance between being supportive and being protective (we're parents), but it won't be for lack of love, good intentions (yes, I know all about the road to hell) and trying. We'll also continue supporting those patronizing autism organizations that support autism research because our son desperately needs relief from pain and from the limitations his manifestation of autism places on his life. Those organizations certainly are not perfect, but like us, they are trying to help our son with their research and right now they are all we've got to help find our son much needed relief.

On Sunday, as we enjoy our time at Wendy's, my husband and I will continue doing our best to be the parents our son needs us to be just as we've done since the day we discovered I was pregnant with him. This is the life that chose us and each and every day we are grateful for the privilege of being our son's parents. It remains a wonderful world especially in all its challenge, complexity, confusion and messiness.

Coalition Building

"What is a Coalition?
In simplest terms, a coalition is a group of individuals and/or organizations with a common interest who agree to work together toward a common goal. That goal could be as narrow as obtaining funding for a specific intervention, or as broad as trying to improve permanently the overall quality of life for most people in the community. By the same token, the individuals and organizations involved might be drawn from a narrow area of interest, or might include representatives of nearly every segment of the community, depending upon the breadth of the issue."
The Community Tool Box (see http://ctb.ku.edu/en/tablecontents/sub_section_main_1057.aspx)

Maybe it's my self confidence born from the strength of my own opinions (an asset or a character flaw depending upon whom is judging), my pragmatic nature tempered by my legal training, or a fusion of all, but I see great value in agreeing to disagree while acknowledging that others have the same legitimate right to their own opinions. It doesn't mean that I think I am any less "right" or they are any less "wrong." It means that we afford each other enough respect so that on those issues where we can find common ground we work together and on those issues we can't, we don't.

I learned early that principles come with a price and as long as I was willing to pay the price I was welcome to my principles. I understand that going along to get along is of great value and am willing to do so on matters that aren't bedrock to me. My dilemma is that so much of life is bedrock to me and compromising my principles just isn't worth the price. For better or worse, I have values that are important to me but sometimes make sense to no one else including my husband. There is much about which we agree (especially our core values) and much about which we disagree. So far (we'll be married 15 years in September) my husband and I love and respect each other enough to agree to disagree. I do realize that I am fortunate I can afford my principles. Unlike too many people in the world, I've always had enough. I don't know what is like to choose between my principles and my next meal or a roof over my head and I'm certainly not anxious to find out.

However, there are opportunities I've declined and others I've walked away from when agreeing to disagree was not an viable option either because the other party wouldn't or couldn't, or because even if we did agree to disagree, our positions on the issue were just too far apart for me to continue productively working together on that issue. This doesn't preclude me from working together with them on other issues, but when all is said and done, the advice of Shakespeare's Polonius, "This above all: to thine own self be true," works best for me. I work very hard not to make it "personal" and most of the time succeed including working with individuals I don't necessarily like but with whom I share a common goal.

The advantage of working with someone like me, especially when coalition building, is that you always know where you stand. I've never had time for head games nor the memory to consistently lie convincingly. When "it is what it is" I don't have to keep stories straight or remember which version of "the truth" I told to whom. For me it isn't personal, it just is. Years ago, my dad, who spent much of his career working in human services, told me that if I was in the human services field because I expected to find self fulfillment and gratification from the opinions of others, I needed to find another field. My self fulfillment should come from my knowing that I did a job well done and not from what others think of me. My dad's career advice simply was an extension of my upbringing where it was ingrained in me (either naturally or by my parents) that what mattered most was competing with myself to be the best I possibly could rather than competing with my peers. The older I get, the more this rings true.

For the past decade while dealing with the challenge of raising a child with autism who also has chronic health issues that allude diagnosis let alone treatment, I've spent my spare time advocating within the Arizona Autism Community, the Disability Community and the Community at large while building my own network of people interested in working together to improve the lives of those affected by autism and other developmental disabilities. Too often it can prove to be a daunting challenge given the diverse make up of the Autism Community where the very vocal members (including parents, autistics and professionals who work in the field) fiercely and passionately hold fast to their opinion of "the truth" as they experience it further complicated because there are far more unknowns than knowns about autism. However, I have a penchant for ferreting out resources and talents others hide just below the surface and knitting them together to advance our common cause. Again, depending upon whom is judging, this talent is either an asset or a character flaw. I once had a boss who commented that I had no problem taking other's ideas and running with them while always being sure to credit the original source. He didn't mean it as a compliment, but it was the most flattering thing he ever said about me. I don't advocate and coalition build within the Autism Community because I think others will be "grateful" or because it is my mission to "save" others. I do it because it needs to be done and sharing my resources (skills, experience and knowledge) with others adds much value to the hard work I do navigating "the system" on behalf of my son and our family in order for us to receive the supports and services we need. My self gratification continues to come from a job well done.

The development and evolution of social media affords us an amazing coalition building vehicle. I'm not sure how many people read my ramblings on this blog (I confess that not only am I not good at blogging regularly but I also am not marketing my blog beyond my own FaceBook posts). However, for the past decade I've participated in a few local online support groups (yahoogroups.com and more recently FaceBook) that I've personally found very helpful. I also sit on the Board of the AZ Autism Coalition, a nonprofit lacking bricks and mortar whose mission is to work together for systems change to improve the lives of those living in Arizona affected by autism. We provide resources and enable advocacy through social media (website, FaceBook, LinkedIn and Twitter), conferences and public meetings especially when public policy issues arise for which the members of the Autism Community need reliable information and an opportunity to meet and network (both in person and online) with one another so that we can work together for a common cause. We members of the AZ Autism Coalition don't always agree, but we work hard to "agree to disagree" and afford each other enough respect so that on those issues where we can find common ground we work together and on those issues we can't, we don't.

Parents Like Us

A few weeks ago a group of moms from my son's school sat around a kitchen table, drank coffee, ate a yummy brunch spread, enjoyed the gracious hospitality of the same amazing mom who hosts us semiannually and stuffed cash in envelopes for the school staff appreciation project. Twice a year we ask parents to pool their cash gifts for the staff who work so hard all year long with our children. We ask a different parent to collect the money each time. Donors and the amount of their gift remain confidential. Usually two thirds and sometimes three quarters of the families participate with cash donations. We never know the circumstances faced by our families. We just ask that all participate by at least contributing good thoughts and prayers. These parents sitting around the table also are many of the core group who work so hard to make our parents association upcoming annual wine and cheese silent action fundraiser a success. Each of us is raising a child severely challenged with autism yet we find a way to pool our talents and resources for the benefit of all of the children at school. Each of us has her own story we readily share with one another because we know that sharing our challenges makes the journey just that bit easier for the rest. We share a special bond and kinship. Unlike our friends who aren't raising children with special needs, these friends actually understand our challenges because we all are on similar journeys.

Talk that morning got around to the tragedy in Newtown, CT as it had just happened the week before. Interestingly none of us mentioned being worried about the safety of our own children that Friday morning. It could be because tragedy already struck our school community, we know that the school staff will do everything possible to keep our children safe. A few years ago one of our parents committed suicide by driving over the side of a mountain with his seven year old son in the car. Both died upon impact. No one in our school community, including his family and the school staffers who also worked with the child in his home, had a clue that this parent would do that. We all were shaken to the core, especially the school staff, but we came together as a community to support one another as the staff grieved the loss of this magical, beloved child and helped our children deal with the death of their classmate and friend. This experience further showed us how truly blessed we are that our children attend this school where the staff treats them as family. It also reminded us how fleeting and totally unpredictable life can be; as if we need a further reminder.

As parents our hearts went out to the parents of all of those who died in this tragedy. However, as parents raising children with special needs, the parents of the shooter also were included in our thoughts. Those of us sitting around that table were less likely than others to judge his parents as none of us had walked in their moccasins. Unlike the author of the blog entitled I am Adam Lanza's Mother, none of us around that table is raising a child faced with similar issues. We are well aware though what it is like for our children to receive inadequate medical care and services for which we spend countless hours and energy navigating "the system" to procure because at least some treatment is better than none at all.

Today we still have no idea why the Newtown tragedy occurred. We don't know what, if anything, could have been done to prevent it. We do know that like the last year's Tucson shooter, the recent Portland shooter & the Colorado shooter, the Newtown shooter had private health insurance that covered Behavioral Health treatment. Why treatment wasn't accessed or if accessed why it wasn't effective remains a mystery, although knowing what I do about the availability and adequacy of our private and publicly financed Behavior Health systems, I can't say I am surprised. I still don't have any easy answers or quick public policy fixes to suggest. I don't think arming school teachers or placing an armed guard, even with proper training, in every school in the nation is the answer. Guns always have scared me and I refuse to allow them in my home. I don't know if violent video games, divorce, bad parenting, the destruction of the nuclear family, the decline of organized religion or the increase of political vitriolity contributed to these situations. All I know is that a few weeks ago 28 people died needlessly and despite similar recent incidents, we still have no clue.

Enjoying Holiday Traditions

In our home 1998 is known as the year we experienced the Christmas Season while living in Germany, met friends in Rome for Christmas, attended Midnight Mass said by Pope John Paul II at St. Peter's Basilica, enjoyed Christmas Dinner that evening at the Hassler Restaurant overlooking all of Rome thanks to the generosity of our friends, then spent 10 glorious days touring Italy and I caught the Advent Wreath on fire. Wanting to celebrate a German Christmas as authentically as possible, along with trips to the Christkindlmarkt in Munich, Nuremberg and Bamburg, I visited our local 99 Pfenning Store (one of my favorite universal shopping experiences) to discover that many Germans assembled Advent Wreaths by attaching taper candle holders to a pine wreath. We lit our Advent Wreath for the last time that 4th Sunday of Advent as we spent a quiet afternoon anticipating our upcoming trip. Luckily my husband quickly noticed that as the hot wax burned way down it hit the dry pine and burst into flame. No permanent damage was done except to my pride, but 15 years later my husband still lovingly reminds me of that time I lit the Advent Wreath on fire.

A few weeks ago we decided our son was ready for us to resume the tradition of lighting an Advent Wreath. Waiting is a major challenge for him but he is making progress. We probably still have a metal Advent Wreath (our stateside replacement) and the German taper holders packed away with the breakable Christmas decorations we haven't seen since moving to AZ a decade ago, but rather than digging through long unopened boxes I visited the $1 Store. I bought 4 short pillar candles, (3 red and 1 white; they didn't have green in the German tradition or pink and purple either) and a tin plate decorated with a poinsettia picture. I completed the Advent Wreath with a flourish of double sided green and red satin ribbon from seasons past.

Last Sunday we lit 1 red candle. Our son didn't understand why we couldn't light the other 3 and was persistent in his insistence but maintained his self control. As a compromise we also lit an "everyday" pillar candle (we don't often light candles as we worry about safety) and he accepted the solution without major protest. Last night we lit the same red pillar along with a 2nd red one. We explained that it was the 2nd Sunday of Advent (my husband complimented his explanation by again showing our son the lit candles he drew for each Sunday on our wall calendar). In our house this is progress!

This weekend our son helped my husband put 2 strings of lights across the front of our house (for now the Santa and Friends Carousel for our front yard remains in the garage). We do just enough to participate in the festivities. Like most Phoenicians, over the next several weeks we'll enjoy evening drives exploring local neighborhoods searching for all the outdoor light displays.

Next week I'll spend a few days baking biscotti as gifts for friends. In my previous life I used to bake and give away over 500 cookies along with homemade ornaments. Courts aren't allowed to accept gifts and the judges before whom I practiced were sticklers for ethics. However, even they couldn't turn away a tray of homemade cookies for their staff especially when delivered Christmas Eve morning because I was there obligated to appear on behalf of my clients. Having the uninterrupted time to bake is a luxury for me and reminds me of those holidays past. It is a tradition to which I stubbornly cling and savor as I've had to let go of so many other holiday traditions that proved just too overwhelming given the needs of our son.

The weekend before Christmas we'll put up our tree with nonbreakable ornaments plus some other Christmas decorations including our son's Little People Nativity Compound (the wise guys weren't included in the Nativity Set and there was a deal if you also bought the Inn Set plus the Little Drummer Boy Set was only an extra $10) along with the silver figurine Nativity Set my brother and sister-in-law sent us our 1st Christmas in this house. They knew our son wasn't ready for us to display the hand painted ceramic set I originally gave to my mother in 1980. Even though our son has made amazing progress over the past few years, my mother's Nativity Set will remain in the box for at least another year.

We've learned to keep our holiday celebrations simple so as not to overload our son. We joke that we celebrate 12 Days of Christmas because even though we limit the number of his gifts, so far our son doesn't want to open all of his gifts on Christmas morning and we don't push him. There is no universal rule we choose to acknowledge that says he must. Our number one priority is for our son to enjoy the celebration so we just let go of what really isn't important and follow his lead.

Christmas Eve we'll celebrate with friends who over the years have become family, even though it isn't their holiday. They are Jewish and annually we share Passover with them even though it isn't our holiday. When we lived in Texas we shared our holiday celebrations with friends who happened to be Muslim and Hindu and they too invited us to their holiday celebrations. This year we'll spend the afternoon enjoying appetizers catered by Costco, Trader Joe's, Safeway and Fry's (including latkes & lox) rather than the big sit down fish dinners of my previous life in very Italian American East Utica. We'll light the Advent Wreath for our guests to enjoy along with having a roaring fire in our gas fireplace. We hope this year our son will be interested in learning to spin the dradle one of our friends brought him last year when Hanukkah and Christmas fell on the calendar together.

By necessity for our son we try to keep our celebrations as stress free and relaxed as possible, but the spirit always remains the same. It's all about celebrating with family!

This 1 in 88 Can't Wait

On Thursday the US House Committee on Oversight and Government Reform (http://oversight.house.gov/hearing/1-in-88-children-a-look-into-the-federal-response-to-rising-rates-of-autism/) held a hearing on autism. As with all Congressional Hearings, it was about being the vehicle for spinning and publicizing a particular pre-staged agenda, not about finding " the truth." In this case the agenda was that vaccines cause autism and create individuals who become burdens on their families and society because they will never become self sufficient, self supporting adults.

Those who know me are well aware that I pull no punches. I am blunt and quick to share "the truth" as I perceive it. My reality is that, for whatever reason (as my husband says, one day God has a lot of explaining to do), unless there is a miracle my son most likely will not become a self sufficient, self supporting adult. In our house we prepare for life's challenges while we pray for miracles. It is true that my son is not the child I anticipated when planning my future. No mother I've ever met asks to give birth to a child with autism or any other added challenge. Life is hard enough. We all mean it when we say we don't care if it is a boy or a girl as long as it is healthy and also when we say we'll love our child no matter what. When my son was first diagnosed with autism I didn't ask "Why Me?" After spending a decade practicing in Family Court I knew better. The question instead was "Why Not Me?" I knew that no matter the challenge life presented, somehow I would find the necessary resources to deal with it. Being a survivor is as much a part of the fiber of my being as sharing my bluntness.

My husband and I describe our son as our greatest blessing and our greatest challenge. More so than most children he currently is a riddle, wrapped in a mystery, inside an enigma. However, everyday we come closer to learning a bit more about the key necessary to unlock his potential and enable him to experience his life opportunities to the fullest extent that may be available to him. Our life may not be easy or fair, but whose life is? Each of us faces our own challenges whatever those may be. My son having autism doesn't change my truth that from conception he is the most wanted and loved child in the world to me and my husband. However, my son having autism does change the resources I need to live the life that has chosen me raising this child I didn't anticipate. One of the most important of those resources for me is to view this experience as a journey and see challenges rather than burdens and crosses to bear.

While my attitude is important, it isn't the only resource needed to help our son reach his fullest potential whatever that may be. In our family we look at our needs, assess our available resources, weigh our options and makes choices as to how we are going to use our resources to best meet our needs. Last night rather than buying new furniture we ordered couch covers. During the week we drive our 2008 Ford Focus with 154K miles on the odometer and 2 years of payments left 30 miles and 50 minutes each way through Phoenix I-10 rush hour traffic so our son can attend school in an office building shared with a colonoscopy center lacking a decent playground and other amenities even though we live a block from a shiny suburban elementary school complete with ample playing fields but lacking the program he so desperately needs. We can't move because our mortgage still is so far underwater we can't afford to sell and our school district pays our son's $36K annual tuition as long as we continue providing his transportation. I spend my days putting our son's current needs first rather than resuming my career and adding a second income to our household so that we could be saving more for our retirement and his future. Please don't misunderstand. I am not whining or complaining. Everyday I choose to do this because it is what our son needs right now. I realize how lucky we are that my husband makes enough income to support our family and that we have available resources with which to make choices. I realize how lucky we are that I have the skills to navigate the public and private education, healthcare and social service delivery systems to secure the best available resources for our son.

However, members of the US House Committee on Oversight and Government Reform and other public policymakers who decide how public resources are allocated need to understand that even with all of our luck and hard work, the currently best available resources aren't sufficient to meet our son's needs.

Because medical science has so few answers about the causes and treatments of autism and co-morbid conditions, our son continues to suffer from pain he tries to relieve by banging his head through concrete floors and walls. For 6 years we followed doctors' orders and unknowingly gave him a medication that exacerbated his headaches. We can't blame the doctors (you name the top relevant board certified pediatric specialist in AZ and we consulted them) as they did their best but were unaware of this possible side effect. Our son also suffers from serious Acid Reflex (he has deep furrows in the bottom of his esophagus) and chronic congestion; the causes of neither of which can be explained by doctors who do their best to treat the symptoms and relieve his pain.

As should be expected, our son's chronic pain further complicates every aspect of his life. Our son has verbal and motor apraxia and learning challenges that can't even be measured using current evaluations. Even though our son is bright and naturally curious, learning from conventional methods is difficult for him. He doesn't learn by group instruction and needs to be taught one on one which is labor intensive and more expensive.

We have no idea what our son's future holds. Every day he makes progress that amazes us. However, reality is that unless there is a miracle in his lifetime he will continue to need intense, expensive treatment and services during his lifetime that currently aren't available and there is no way we will be able to afford what he needs unless public resources are used to provide them. According to the CDC, 1 in 88 children, 1 in 54 boys (the rates are even higher in AZ) living in the US who were born in in 2000, the year before our son, has autism spectrum disorder.

Current medical research tells us that there is no "autism," but autisms. While there is no known cause there is evidence of both a genetic and an environmental causation. We have learned much in the past decade since our son was first diagnosed with autism, but we haven't learned enough to meet his needs or the needs of all of the other 1 in 88 who can't wait. I understand that we in the US are about to go off a fiscal cliff that could plunge us and the world economy back into a serious recession. However, I also understand that this is America where we have a penchant for tackling tough challenges and figuring it out. Now is the time for President Obama to work with the members of the US House Committee on Oversight and Government Reform and all the other public policymakers to look at our needs, assess our available resources, weigh our options and makes choices as to how we are going to use our resources to best meet our needs. We must create and implement a US Autism Policy. I really don't care if they call it a public health crisis or an epidemic. Semantics are only useful when they serve as a call to action and inspire results. We can work together to figure out if autism is caused by vaccines, genetics, burning coal or whatever else it might be.

Our son has waited a decade too long. With 1 in 88 children affected by autism, we can't wait any longer. We need to develop the necessary treatments and services NOW! This is my truth that I want the members of the US House Committee on Oversight and Government Reform and other public policymakers to understand and get to work.

Faith of My Grandmothers

Mary on a Half Shell was a common sight in my hometown neighborhood. Those ladies with a deep devotion to the Virgin Mary who felt obligated to share it with the entire world (often in thanks for an answered prayer) submerged half a bathtub into the ground, enhanced the presentation by cementing rocks to the outside of the visible tub half and planted a Virgin Mary statue within. My high school was 60% Roman Catholic. Several college friends graduated from Catholic high schools on Long Island with lower percentages of Catholic students. There were ten Catholic Churches within two square miles of my high school. In sociology class we discovered there were a couple more Italian bakeries than Catholic Churches in our city but were not surprised that bars were the most plentiful establishment in town. Everyone knows that in the Northeast wherever there is a Catholic Church you'll find a bar on the opposite corner. The men need some place to wait while their women attend mass.

My maternal grandmother didn't have a Bathtub Mary but she did have a lighted picture of Christ (it replaced the traditional Crucifix with the hidden Last Rites Kit usually found above the headboard) on her bedroom wall and an Infant of Prague statue on her dresser. I have my grandmother's bedroom Crucifix and my cousin has her Infant of Prague statue complete with several seasonal wardrobe changes. When we visited Prague I made sure we saw the original Infant of Prague statue in honor of my grandmother. It looked just like hers. I lit a candle in every European Catholic Church we visited just as my grandmother did every Sunday after mass at St. Anthony's in East Utica. I also had a mass said for my grandmother and the rest of our deceased family at the St. Anthony Basilica in Padua, Italy. During their 1964 trip to Italy to finally meet my grandfather's family in Bari, my grandmother bought each of her children and grandchildren an Italian gold religious medal that she wore around her neck on the way back home to avoid paying the customs tax. I wore mine religiously until my son grabbed it and broke a link. It sits fixed (thanks to my wonderful husband) in my jewelry box awaiting safer times.

My paternal great great grandmother was a nun. Together she and her sister emigrated to America from Germany. Her sister married a Civil War veteran who had emigrated from Germany years before. My paternal great great grandmother instead chose to dedicate her life to God and joined the same order of nuns in Syracuse, NY as recently sainted Mother Marianne Cope (http://blessedmariannecope.org/). When her sister died during the birth of her fourth child, my great grandfather, she left the convent, married her brother-in-law and raised her sister's children. Depending upon who was remembering, my great grandfather was either so sickly or so lacking ambition that he rarely held a steady job. My great grandmother was the family breadwinner working as a house maid for the Everson's, one of Syracuse's most prominent families. While my great grandmother worked her mother-in-law looked after her children. My grandfather, his brother and sister began their day by attending mass each morning before breakfast. My grandfather broke his family's heart when he disappeared for ten days and married a Lutheran. While my father is not Catholic, he chose to raise his children as Catholics. His paternal aunt and godmother shared our family's German Catholic heritage with us. My great aunt was never blessed with her own children so she and her husband adopted our family and were our grandparents minus the official title. When my great aunt died she entrusted me with the cross her grandmother received upon joining the Sisters of St. Francis. It too sits safe in my jewelry box although it isn't a piece I'll ever wear.

My family continues to self identify as Catholic even though over the years our weekly mass attendance has become spotty. The beauty of our Italian Catholic heritage is that we remain secure in our identity. Italian Catholics have never had any problem separating our faith from the foibles of the current administration of our religious institution. Italy has more churches per capita and the lowest per capita regular weekly mass attendance among Catholics of any country in the world. I remember my first introduction to Cafeteria Catholicism. As a six year old studying for my First Communion, the nun told us that only Catholics could go to heaven (Pope John Paul II publicly corrected that misinformation in a papal encyclical written in the early 1980s). Worried for the eternal fate of my father, I asked my mother back in 1967 if that was true. She calmly told me not to worry because contrary to what the Church may think, it doesn't know everything. Thus began my true education in Catholic religious doctrine.

I wasn't surprised a few weeks ago to see pictures of the Breezy Point Virgin Mary all over the Internet. While her grotto may be a bit fancier than the repurposed bathtubs of East Utica, she symbolizes that same Catholic faith shared over the centuries by billions. For us it isn't really about big institutions or fallible leaders. It is all about faith. We know better then to ever try to rationalize it or God forbid, ever try to make sense of it. We leave the intectualizing to centuries of theologians who still can't agree how many angels can sit on the end of a pin. We simply believe. For all the things for which we have no explanation, we rely upon our faith. Maybe Marx was correct that religion is opium of the people, but it doesn't matter. When all is falling down around us we rely upon our faith to see us through. Breezy Point Virgin Mary is a sign for us that no matter how awful the tragedy, our faith remains ready to help us survive. It is this faith passed down to me from my maternal grandmother, my great aunt and my mother that I am trying to pass down to my son. I pray that the statues, crosses, medals and other symbols that helped sustain countless generations of our family by reminding them to keep the faith also help my son remember his inheritance of Catholic faith just waiting for his embrace.