God's Not Dead

A few days ago while my son was in school I sat waiting alone in my quiet car listening to the original cast album of Jesus Christ Superstar, the religious touchstone of my generation, quietly shedding tears of of sorrow and joy, as I should, during Easter week while remembering the Passion of Jesus Christ. The night before I was unable to attend Passover Dinner with friends (scheduling challenges are a constant reality for parents raising children with special needs); one of our annual family holiday celebrations. While it isn't exactly my family's holiday, it has become a tradition for us to join our local Jewish "Framily" for Passover Dinner and they come to our house for Christmas Eve. Several of us were unable to attend but along with Elijah, we were there in spirit and know there always is a place for us at the table. This year it was especially important that our hostess, who is facing some health challenges, have loving friends and family around her table so my husband graciously attended and represented us. It was a tough sacrifice but someone had to do it and somehow he managed to enjoy the amazing company, conversation and food for the both of us. ;)  Next year in Jerusalem or at least together at the same table!

Yesterday while my son was in school I saw the movie God's Not Dead. It was worth seeing even though the movie was smug with a trite plot and a pat ending. My life experience, like my faith, is more raw and gritty; replete with blood, guts (with my son it's usually those other unpleasant body substances), unanswered questions and messy endings. Nothing, not even death, is tied up in a pretty package complete with a bow. However, it's a wonderful world especially in all its challenge, complexity, confusion and messiness.

This week my husband and I talked about how we might more formally share our religious inheritance with our son. We're Catholic and even though the parish we found when we first moved here was a good fit for us (now very difficult for me to find in a diocese led by an ultra conservative bishop), the church still is too large for our son to attend mass without sensory overload. The last time we inquired about possible accommodations several years ago it was made clear that we would have to make all of the arrangements; one more among so many challenges for us to solve. Over the years we stopped attending mass as it just didn't feel right to belong to a parish, no matter how liberal, that didn't include all of us. Our son now is reaching a point in his development where he can begin to sit and pay attention for more than a few minutes; essential for religious instruction. I found an appropriate curriculum online so when he is ready we'll order the book and teach him at home. We'll again approach a parish that is a good fit for all of us when the time comes for our son to receive First Communion and Confirmation. Until then we'll keep informally sharing our faith with him at home. 

This is an exciting time to be a Catholic now that Pope Francis is helping the Holy Spirit breathe fresh air into the Institutional Church. I look forward to my Church welcoming me rather than shutting the door in my face and telling me I no longer am a Catholic because although my core beliefs align, I don't agree with all of the local bishop's interpretations of "the rules." Since leaving Utica in 1997, in my heart, I've remained a member of the Syracuse, NY Catholic Diocese now literally adrift in the desert.  ;)

WWJMHD

Yesterday I attended a Voter Engagement seminar given by PAFCO (Protecting Arizona's Family Coalition http://www.pafcoalition.org). Kristin Gwinn, PAFCO Executive Director, asked us what we do when we have questions about making sure our 501(c)(3) nonprofit remains nonpartisan when advocating about Public Policy (v. Politics). My answer blurted without any forethought was that I ask myself WWJMHD ~ What Would Joyce Millard Hoie Do? 

Joyce is the Executive Director of Raising Special Kids (http://www.raisingspecialkids.org) and the most diplomatic, professionally nonpartisan community leader with whom I've ever had the privilege of working. Joyce, like me, is the mother of a son with Autism Spectrum Disorder so she truly understands life in the trenches raising a child with special needs; been there, done that and has the tee shirt. Unlike me, Joyce has an amazing poker face. I never want to play Texas Hold'em or even Liar's Poker with Joyce. She can sit in a meeting listening to stuff that makes my blood boil and remain completely composed, find common ground and work to fashion productive solutions to very complex public policy challenges while smoke is coming from my ears, my lips are zipped and I'm sitting on my hands so I don't choke anyone. It is then that I remind myself to watch Joyce and follow her lead if she's there or I ask myself WWJMHD?

Yesterday's seminar was all about how nonprofits that work with those Arizonans who currently aren't actively involved in shaping public policy can empower their constituents to stand and be counted first by voting and second by expressing their opinions to AZ Public Policymakers after establishing themselves as active voting citizens. While we'd all like to believe that political campaign donations don't influence Public Policymaking, reality remains that organized and empowered grassroots voter participation is the only way to compete with big dollar campaign finance. Organized grassroots citizen empowerment is even more important after Tuesday's US Supreme Court decision in McCutcheon v. FEC (http://www.supremecourt.gov/opinions/13pdf/12-536_e1pf.pdf) striking down any aggregate limit for an individual's campaign contributions to multiple candidates.

"Right now, you know, it's about 150,000 Americans who are the relevant funders of congressional campaigns. That's about one-twentieth of 1 percent of America. And after this decision that number's going to fall even more, you know. So 150,000 is about the same number of people who are named Lester in the United States. You know, if it falls to about 40,000 relevant funders, that's about the same number of people as are named Sheldon."

Harvard Law School Professor Lawrence Lessig

LESSIG10:22:33

http://thedianerehmshow.org/shows/2014-04-03/supreme-court-strikes-down-overall-limits-campaign-contributions/transcript

Last night I shared my serendipity with a fellow AZ Autism Coalition Board Member who commented that WWJMHD would make for a long bracelet saying and thus was born a new Public Awareness Campaign for the AZ Autism Coalition. 350 bracelets will be arriving in a few weeks. Some will be shared with the 2014 Partners in Policymaking class (http://www.pilotparents.org/ppsa/ProgramsandServices/PartnersinPolicymaking.aspx) during their May session when they tour the AZ Capitol. PIP is an amazing advocacy training program for adults with developmental disabilities and the parents of children with developmental disabilities. I am a proud member of the 2005 PIP graduating class. PIP allowed me to make immediate connections within the AZ Developmental Disability Community that would have taken me a decade to establish on my own. Plus I learned additional advocacy skills even though I spent four years working in the NYS Senate, clerked for a NYS Agency and spent a decade navigating the NYS Family Court social service delivery systems for my clients. Things here in AZ work a bit differently than NY or NC or TX! 

The rest of the bracelets will be shared with AZ Autism Coalition members including Raising Special Kids and other community partners including PAFCO. As the AZ Autism Coalition launches our Building An Integrated Community Together campaign we want to remind ourselves that when in doubt about how to achieve our mission we need to ask ourselves WWJMHD. 

The next decade is critical for the AZ Autism Community. 1 in 64 AZ fourteen year olds is diagnosed with Autism Spectrum Disorder and our education, medical and social service delivery systems just are not prepared to meet this challenge. These children are the beginning of a tsunami and unless there is significant change in AZ Public Policy our service delivery systems will collapse trying to meet their needs and the needs of everyone in AZ (including their families and the professionals who provide services to them) affected by ASD. As we Build An Integrated Community Together solving complex Public Policy challenges along the way we of the AZ Autism Coalition will be following the example set by one classy dame; our community leader Joyce Millard Hoie.

Be With Me Documentary

Last night my husband and I attended the local premiere of the Be With Me documentary. The film shares the journey of one child and his family (our friends the Cairns and Monahans) with autism. A few months ago I saw a draft video that evoked within me much raw emotion as I relived my own journey while watching the movie; especially those first few years of intense early intervention after my son's diagnosis. The final version last night evoked less of my raw emotion but left me feeling more hopeful. In many ways the edits speak to the evolution of our understanding of autism and the evolving treatment.

Eighteen years ago JR Cairns' parents were told that he better like his room because he would be spending most of his time there and then would be living in an institution by age 18. Today JR is a college student who has no memory of having had autism. As difficult as that may be for some (especially "professionals" who work with individuals with autism and their families) to understand, it is true. The documentary actually records JR watching videos of his therapy sessions as a young child for the first time. After receiving the diagnosis, the Cairns family marshaled their resources, found treatment that worked for JR, assembled a team of dedicated therapists to help them then worked hard together for four years and the results are amazing! This documentary is a celebration of JR's success and the Cairns family journey; as it should be! The Cairns family decided to share their story to bring HOPE to other families. An autism diagnosis doesn't have to be a "life sentence." Effective treatment is available. However, this documentary is not a "How To" account intended to be used by other families to achieve the same outcomes JR achieved. The Cairns family is the first to acknowledge the truth that "If you meet one person with autism, you've met one person with autism." 

Eight years after JR was diagnosed (and two years after he entered a typical kindergarten class with no need for therapies or supports), my son was diagnosed with autism. Lucky for us, my husband and I received the diagnosis from a different doctor who, when asked, told us he had no idea what our son's future held but that we'd find out together. Like the Cairns family, we immediately began researching autism treatments, sought all the resources available to us and continue working hard together to help our son reach his fullest possible potential. For the past 6+ years my son's treatment has been supervised by the same team of therapists who worked 1:1 with JR. My son is a student at the school they founded and continue to direct. My son's needs have proven to be much more extensive and complex than JR's challenges. So far my son has received a decade of intense intervention therapy, and like JR, his family remains right there by his side working hard together, loving him and encouraging him. We will continue to do so for as long as he needs us even if that turns out to be for a lifetime. Our autism journey is unfolding along a different path from that of the Cairns family but it isn't better, it isn't worse; it is just different. 

It was our privilege last night to join the Cairns family as they shared their story and celebrated JR's success. We also are proud to count the Cairns and Monahans among our friends who celebrate our son's successes with us. Our journeys may be different but we happily are standing along side each other, supporting one another with our friendship and love.

In Danger of Becoming a Cliche

On Saturday my husband decided he was uncomfortable driving his 1996 Ford F-150 with the extended bed. The truck has been on its way out for over a year and he knew the end was near but he was milking it because we like to get our money's worth. The irony is that he had just finished spending the afternoon test driving new cars. So Sunday morning we drove to the SkyHarbor Hertz office (the only one we thought was opened on Sunday) and rented a 2013 Toyota RAV4 for a week. My husband agreed to buy an automatic (I don't drive stick) small SUV so, unlike his former truck that I never liked but he had to have, I can drive it too. After extensive research including my husband butt testing the driver's seat of almost every type small SUV, we settled on a 2012 RAV4 through the Hertz Rent 2 Buy program. Yesterday it became available and we picked it up. Turns out that if we returned the 2013 RAV4 yesterday we'd have to pay a daily rate that works out to be more expensive than the great weekly rate (even with the additional airport fees & taxes) we got. So, I get to drive the 2013 RAV4 for the next few days while my husband test drives the 2012 RAV4 before we purchase it.

Here I am a well educated professional woman who left the working world to raise a child; living in the suburbs now driving an SUV and even worse, enjoying the ride. My Ford Focus is the last bastion left between me and becoming the mom of a child with special needs version of a middle class suburban SUV driving soccer mom (we drive our kids all over town to therapies, special schools and doctor appointments rather than sports practices and play dates). Good thing I changed my political party registration a few years ago from Republican to Independent or the cliche would be complete! Seems both my political party and my church have swung too far right for me so I await them coming back to their senses from the safety of the suburbs and now the comfort of our new SUV.

The summer of 1985 after my first year of law school I dated an MBA student determined to be a CPA because he lived for golf and wanted to be able to afford the country club lifestyle in which he was raised. His father was a physician originally from my hometown (purely a coincidence) who became a NYS Assistant Commissioner of Health during the Rockefeller years because his wife raised enough money for Rocky's campaign. I first met his parents when we paid a curtesy call (we were on our way out for a fun evening) at his godparents' annual hoedown on their "farm" complete with a large white tent, china, silver, vichyssoise and only enough hay grown for the party decoration bales. The barn where the square dance complete with fiddle band and professional caller was held no longer was home to any horses and my boyfriend explained that his godfather, the head of the local VA Hospital, was paid not to grow crops. He first introduced me to his mother and then was pulled away to greet his godmother. His mother's first words to me were "so you're a med student" to which I replied, "no, I just finished my first year of law school" and then endured the longest two minute pregnant pause of my life as I waited for my boyfriend to return and rescue me. That summer the NYS Legislature (I spent 4 sessions while in school as a NYS Senate staffer) loudly debated med mal and tort reform. Lawyers were the sworn enemies of doctors especially in Albany where we lived! My boyfriend next introduced me to his father whose first words to me were "so I hear you just finished your first year of med school" and after my response of "I'm a law student," without missing a beat he replied, "don't worry, our middle son is a lawyer and we still speak to him." From that moment forward even though I was very under dressed in a jean skirt (yes, I was told it was a hoedown) and had never before tried vichyssoise, I again found my confidence and survived the rest of the evening. 

I next spent time with my boyfriend's parents on a trip to Tanglewood to hear the Boston Pops; my first time at a live professional orchestra concert. We were supposed to spend the day at the local amusement park (my preference) but his parents invited us to join them. After the concert they invited me to their home for a simple dinner. My mother raised me well so I asked if I could help and his mother asked me to set the table handing me dishes that I discovered in the following Sunday newspaper Filene's ad were Franciscan Ware Classics on sale for $120 a place setting. It was then that I informed my boyfriend that if he wanted Wedgewood and Waterford he'd have to purchase it himself because I had no interest. His immediate response was to ask if his mother gave me a tour of the dining room. She hadn't which explained my shock upon discovering the value of her 40 year old "everyday" dishes that probably were even more valuable 1st editions. It certainly was another world compared to the La Menu leftover plates gracing my student apartment kitchen cupboard.

Growing up my father was a boy scout professional. We always had enough but my mother's good china, service for 16, was purchased a plate at a time from Loblaws. I now have it although we don't use it because currently formal dinners with friends and family are too much for our son. At the holidays we buy fancy paper plates (no washing required) and put out casual pick food catered by Costco for gatherings with a few close, understanding friends. Our son is gaining patience and is less overwhelmed by crowds so maybe one day my mother's plates will come out of storage along with the Bohemian crystal my husband bought for less than $100 in Prague on the St. Charles Bridge when he first visited in the early 1990's a few years after the Berlin Wall fell. We joke that my husband is the only groom we know who came with his own crystal. My mother reminded me a few weeks ago when I complained about something old my son broke that possessions are only things, replaceable and not what is really important. This outlook toward material possessions along with permission not to expect myself to be a perfect parent are among the most wonderful gifts my mother has given me.

I never was motivated to become an attorney by the lure of a large salary or a corner office. Dating the future CPA only solidified my convictions about the life I didn't want. I actually was very lucky we never got married even though his parents loved me. I was a young, well educated aspiring professional who was Catholic with hometown values; their perfect criteria for a future daughter-in-law. Chances are within 5 years I would have been miserable and divorced with at least one child as I discovered fidelity just wasn't my boyfriend's strong suit. It isn't surprising I began my career at Legal Aid and was known among my colleagues as a street lawyer prepared to brawl when necessary on behalf of my clients. From seventh grade (when I first decided to become an attorney) onward my passion for the law was motivated by my desire to help secure justice for ordinary people.

Even though I no longer actively practice law, my concern remains the same. I often share my advocacy experience with other parents and encourage them as they navigate the healthcare, education and social service delivery systems. It isn't the middle class families like mine for whom I am most concerned. We have the education and resourcefulness to find a way to get our children what they need. Since the 2009 Great Recession draconian state budget cuts to the social service safety net I've done my best to remind people about those who have no one to successfully navigate "the system" on their behalf. I worry most about the undiagnosed child with autism living in poverty born into a family for whom English isn't their primary language. While I always first speak for my son, I also feel obligated to speak for those children facing even more obstacles to receiving treatment and services. 

For many years I've felt just a little bit uncomfortable spending money. It took me some time to adjust after getting married to not earning any money (I first began working at 15 to save for college) even though I came into our marriage with a little savings along with my student loans and my husband came into it with a decent salary but more debt. Over the years my husband's salary has more than doubled and my student loans are paid off as is his debt. We're even saving a bit for retirement. Although I am not as frugal as I once was, my husband teases me that I still am a "cheap" date unimpressed by price alone. My husband works hard for the money he earns and my enjoying the comfortable, but not too comfortable, lifestyle it affords us is a point of pride for him. Although he grew up in suburbia; the child of parents who chose to do what was necessary to live in the "right" neighborhood, his priorities of safety and just enough comfort align much more with my upbringing than his own. This material balance comes more naturally to my husband and parents while I continue slowly growing more comfortable with it. My husband and I still remain acutely aware that although we currently are in a much different financial position than most, one layoff, one illness and there but for the Grace of God our fate becomes very different. Being laid off along with a third of my law school classmates from my legal dream job turned nightmare during the 1990 Recession plus spending a year with my husband laid off after the 2001 Recession triggered the Dallas Telecom Corridor meltdown are life lessons never to be forgotten. However, today I'm going to contine enjoying to drive the 2013 RAV4 until we return it tomorrow and once in a while I might even treat myself to driving our new 2012 RAV4 instead of my beloved Ford Focus.

Forever Friends

People come into your life for a reason, a season, or a lifetime. High school made the 9th school I attended thanks to my father's frequent job transfers and once landing in a growing school district that rezoned our neighborhood several times.  Later I threw in a couple of colleges and law school just to make it an even dozen; then there are the relos to 3 states and a foreign country made to advance my husband's career. Early on I became comfortable in my own company and quickly learned to size up people and wait to meet the right friends for me rather than just settling for any available connection. The summer before my freshman year of high school I was blessed to meet such a friend. Every morning we walked a mile and half to school together. As is often the case we went our separate ways after high school and lost touch until we reconnected these many years later through the magic of FaceBook. We now live on different coasts but she brightens my day with her favorite cat pics (I ignore the spiders), many sent especially for my son who enjoys checking out my FaceBook account. I love reading her posts about her current adventures. Her life is surrounded by the love of her family (she and her husband have 3 wonderful adult children), friends and multiple pets. The one thing that hasn't changed is her heart of gold. Growing up she had a challenging life but she never let adversity harden her heart. Today she is a charitable whirlwind in her small community; that "go to" force who organizes everyone around her to help those in need. I'm not surprised because all those years ago I immediately saw her innate goodness and was blessed when she welcomed this new kid as an old friend. Last night I learned that I'll have the opportunity to pay that long ago kindness forward. A "child by choice" of hers (a close friend of one of her children) begins college here in the next few days. The least I can do is deliver some home baked cookies for her. She'd do the same for me because that's just how it is with forever friends.

Last night I also spoke with a local friend who is a more recent acquaintance. She reminded me that we first met a few years ago at an autism conference (I had forgotten) when I offered her encouragement as she coped with her child's recent autism diagnosis. I didn't remember because that's just how it works. A decade ago when I needed encouragement and guidance a friend was there for me and over the years has even become a "family member by choice." Our families celebrate holidays together including the ones that aren't ours. We join her table for Rosh Hashanah and Passover and her family joins us for Christmas Eve and Easter. She and a couple of other forever friends are my son's surrogate aunts. They are his fierce adopted godmothers who help us look out for his best interest while showering him and us with love.

No matter where I go I am blessed with the penchant to meet amazing people. Everyone has a story and my life is immeasurably enriched by each of them every time I remember to listen, recognize their kindred spirit and accept the gift of their friendship no matter the reason or how long the season. Sometimes I get really lucky and our bond even stands the test of time and distance picking up wherever we last left off when our paths again cross as they inevitably do.

“The majority of us lead quiet, unheralded lives as we pass through this world. There will most likely be no ticker-tape parades for us, no monuments created in our honor. But that does not lessen our possible impact, for there are scores of people waiting for someone just like us to come along; people who will appreciate our compassion, our unique talents. Someone who will live a happier life merely because we took the time to share what we had to give. Too often we underestimate the power of a touch, a smile, a kind word a listening ear, an honest compliment, or the smallest act of caring, all of which have a potential to turn a life around. It’s overwhelming to consider the continuous opportunities there are to make our love felt.” 

― Leo Buscaglia

God's Plan

Every time a well meaning person justifies life by telling me that everything happens according to God's Plan, I just want to kick their God's a$$. I've been extremely "blessed." I have the resources within myself necessary to cope with all the challenges that I've encountered in life and even to learn from those experiences. For me, I say to that God, "Bring it on!" However, my son and and all of the other innocent children, are another story. My first few weeks practicing in Family Court quickly taught me that some things are beyond my ken. I stopped asking "Why" and relied on my faith to see me through. 

Life isn't easy and it isn't fair. Much of life may be beyond my ken, but I refuse to believe in a God who would purposely make innocent children or anyone else suffer just so they provide others with the opportunity to learn from their experiences or for some other inane reason. I believe in the God of Love who does not micromanage in order to teach us lessons.

Dignity Health, my husband's employer, believes that Human Kindness (https://hellohumankindness.org/) is the Humanity that connects us all and recently launched a campaign to remind us of this. Human Kindness is powerful medicine and we already are kind. I believe in the miracle of Human Kindness because I know the God of Love dwells within each of us. I am reminded of this truth every time I remember to look for God in someone else's eyes; especially the eyes of those I love. Our eyes truly are the windows to our souls. Our challenge is to share God's Love found within each of us with one another so we each can better deal with a life that isn't easy or fair. That's God's plan.

In Defense of Marriage

September 5th is our 15th wedding anniversary. The traditional gift is crystal. To tell the truth, I'm hoping my husband has my diamond reset into an anniversary ring. I'm sick of wearing 2 rings (it's irritating when they rub together) and like many women, I think I'm ready to move from yellow to white gold; maybe add a sapphire (my favorite stone) to either side. It's funny because I'm not really a jewelry person. In my previous life I wore rings, a watch, necklaces and bracelets daily with my suits but jewelry just doesn't fit with my current life. 

When my husband bought my diamond the clerk told him that 1/3 carat was a wonderful starter ring. My husband laughed and explained that the clerk obviously didn't know me. I sent my husband to the jeweler with a strict budget (I still can't imagine spending too much for a rock I wear on my finger) and what I think is the ideal size (I didn't want it too big because I wanted to wear it 24/7). I have no intention of ever trading up diamonds or husbands. As a matter of fact, it took me 9 months of being engaged before I was even ready for a diamond. My original engagement ring is a simulated sapphire he bought at Sam's Club. I fell in love with the ring (he didn't think it was expensive enough) then dragged him to a dozen jewelry stores looking for something I liked better but to no avail. I wanted what I wanted. My mother gave him a hard time that the first ring wasn't a diamond and demanded he put a diamond on my finger before my wedding shower so he did and by then I finally was ready to wear it.

According to the US General Accounting Office there are 1,138 benefits of marriage in Federal Law (http://www.gao.gov/new.items/d04353r.pdf). Each state also confers legal benefits of marriage. While I certainly am not worried about the health of my marriage, reality is that those Federal and AZ State benefits of marriage protect me. Living in a Community Property State my husband can't just walk away with our assets (not that he would) regardless of whose name is on the title. BTW, our only single titled asset is his truck and he's welcome to it. Circumstances early on in our marriage (we wanted children and my biological clock was ticking loudly) made the most sense that we make decisions that promoted my husband's career. It was a foreign country, two states and landing on the opposite coast before we settled here in the desert for the past decade. Given the needs of our son combined with my husband's wonderful ability to make enough money to support us at the level to which I am entitled to become accustomed (before we were married my husband was told by the Most Rev. James M. Moynihan, the 9th Catholic Bishop of Syracuse, that this is his marital obligation), I have yet to resume my career. However, this leaves me economically vulnerable. 

After a decade of advising clients, I did not take my own advice. I did the exact opposite. We immediately commingled all assets and debts. I used the inheritance from my grandmother (Gram would approve) to help purchase our home. I have no separate account "just in case." I am not employed. I even took his last name. It was important to him and there was no economic benefit to keep my established professional name as I had already closed my law practice and left my hometown. A decade in Family Court and a lifetime observing my parents and grandparents taught me that in the most successful marriages, both partners are "all in." It is a partnership where everyday both parties have everything to lose and everything to win together. Fifteen years ago we held hands and jumped off the cliff together into the great unknown. Despite ignoring my own professional advice, it was the best decision I ever made. Maybe what set me apart from my clients is that I entered marriage with my eyes wide open and the knowledge that no matter what comes our way, I retain the ability and the drive to support us. A dozen years ago when my husband was laid off for a year after the Dallas Telecom Corridor melted, I took a part time evening/weekend job while he retrained and spent his days looking for work. Today our circumstances are very different. Luckily we survived the Great Recession without a layoff. After a decade of volunteering in the disability community I have established a strong local professional network and can restart my career whenever we choose.

In June the US Supreme Court struck down the Defense of Marriage Act opening the door to the legalization of same sex marriage. This decision doesn't deminish the advantages to my marriage of those 1,138 Federal legal benefits or of the AZ State conferred legal benefits of marriage. We retain the same exact legal protections. What it does is extend those 1,138 Federal legal benefits of marriage to a previously excluded group of people who, like us, love one another and are committed to be "all in" everyday with each partner having everything to lose and everything to win. Like the majority of Americans, gay marriage is personal to me. For the past 15 years I've watched my brother-in-law struggle to find the right someone with whom to share his life. Now when he finally does, he is entitled the same 1,138 Federal legal protections as his brother and me. 

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.

My Family

Last week a friend from my previous life when I practiced law in Central NY back in the 1990's emailed asking me to tell him a bit about my family. We haven't been in touch much over the years, but he's one of those friends with whom you can pick up contact again at any time and it feels like you're resuming a conversation from last week. Here's what I sent my old friend. My husband thinks I did a pretty good job of describing our family so I'm sharing it here.

The best insight into life at my house probably come from this blog; not that I write regularly but there are a few adventures here.

My husband is a mensch. He works hard and tries his best to be a good husband & father.  He truly is a nice person who is comfortable in his own skin and liked by most everyone he meets. When he isn't spending time at work or with me &/or our son, my husband prefers to spend his free time on his computer blowing away his operating system or on a multitude of geek projects (he has a soldering iron & does component level fixes). After 15 years together we continue to enjoy each other's company & we're still in love. We've settled into a comfortable daily routine that should last the rest of our lives because we try not to take each other for granted. The best thing about my husband is that he knows our son and I are the best parts of his life and the knowledge is mutual. I confess though that after a dozen Christmases of receiving coffee themed gifts (I like coffee but don't drink it religiously), I finally fessed up & told my husband enough with the coffee gifts. I didn't want to hurt his feelings because he tries so hard (and usually misses the mark), but like with most household &/or personal details that don't affect him (my husband hates coffee), he just didn't notice the stuff sat on a shelf. However, My husband can tell you in graphic detail exactly what I was wearing the first time we met. My husband thinks in pictures (movies actually rather than stills) and has a photographic memory. When paying attention (he has ADD) he can see things in vivid detail. I see green grass. My husband literally sees 15 shades of green. He makes life interesting.

Our son is amazing, but then I'm biased. Having autism makes navigating the world challenging, but our son is persistent. We used to marvel during his first two years that he was trying to explore the entire world in a day. Turns out that because of the autism our son is slow to develop the sensory filters most of us have and he tries to take in the world as if he were drinking from a fire hose. It was in his third year that our son really began being constantly overwhelmed by the world he is so intent on exploring. When not overwhelmed our son is a magical child. His laugh is infectious and people are automatically drawn to him. Contrary to myths about autism, our son always has been an affectionate child. The first time I held our son he smiled at me and his father (no it wasn't gas). Although he loves me very much, our son truly is his father's son and always has been. He wants to know how everything works and lately has begun building (his fine motor skills need much developing) things with help. Our son also is a climber but lacks a sense of danger. This morning I found him contently sitting on the shelf above our refrigerator (we have 12 foot ceilings) designed to hold baskets not boys. We're working on it! In April our son repeated vocalizations upon request for the 1st time. In addition to autism, he also has apraxia. Learning to talk is very slow going and very hard work (similar to the challenges of stroke patients who have apraxia) for our son, but his persistence is an advantage. He understands most of what we say (we're just not sure exactly how much because our son has neurologic processing issues as part of the apraxia) and we find out every day new things he already knows. Life with our son always is an adventure!

The last time I was in my hometown of Utica, NY was November 2000 right before our son was conceived. I won't be returning any time in the near future. Our son has serious problems with barometric pressure changes so he can't fly. Last spring we tried driving up Mt. Lemon outside Tucson and he was crying in pain half way up at about 7000 feet.  Plus all of my family moved from New York and is scattered around the country. Last month we had hoped to visit my parents who live a 26 hour drive away in Gulf Shores, AL but our son just isn't ready for a 3 day car journey. Maybe next year. In the meantime we'll continue practicing by staying overnight in local hotels and try the 6 hour drive to San Diego to visit the ocean. Our son keeps making slow, steady progress and we're keeping our fingers crossed.

Please let me know if you ever make it to Phoenix. Our home is always open to old friends from all over the country.

Fundamental Rights

Last week I was shopping at the 99 Cent (yes I know it more accurately should be called the Dollar Store as everything is now 99.99 cents so it rings up as $1) Store and couldn't help noticing that a group of fellow shoppers were individuals with developmental disabilities who were accompanied by staff from an organized program. If I wasn't tipped off when they all emerged from an unmarked white 12 passenger van, I would have noticed when a staffer (the staff members were wearing unmarked blue shirts) told the group as I entered the store to "line up." The group was milling around unsure of where to go & unintentionally blocking the store entry. Before I could stop myself I informed the staffer that my fellow shoppers weren't children. While pushing my cart down the aisles I overheard a staffer (again, if their blue shirts didn't already give them away their behavior & words certainly would) tell another staffer that "He has the right to buy whatever he wants." I confess that I'm not sure exactly why it became necessary to wrap an individual's ability make purchases at the 99 Cent Store in the protection of the US Constitution. After checking out I again encountered members of this group of fellow shoppers milling about waiting for other members of their group to finish checking out and unintentionally blocking the exit. One of them told another to move out of the way. I, again not able to keep my mouth shut, told him that it was ok. I would have just said excuse me, the guy would have moved and I would have said thank you like I do countless times with other fellow shoppers who are preoccupied. Instead both of us were deprived of a typical social encounter that further segregated rather than integrated both of us.

This isn't the first time I've noticed adults with developmental disabilities being set apart and treated like children by paid staff while out in the community. Unfortunately I know it won't be the last. Don't get me wrong. I do understand that we as a society have come far regarding community integration and acceptance for everyone especially people with developmental disabilities. We no longer lock those who are "different" away in institutions. However, we still have far to go.

The US Supreme Court decision on the right to community integration for people with disabilities in Olmstead v. L.C. (http://www.ada.gov/olmstead/index.htm) is yet to be fully implemented. A few weeks ago the Justice Department filed suit in the U.S. District Court for the Central District of California against the city of San Jacinto, CA for violating the Fair Housing Act and the Americans with Disabilities Act. It seems that San Jacinto officials decided to ban group homes for individuals with developmental disabilities from locating in their city and are systematically using their regulatory power to shut them down. Luckily not all cities are San Jacinto. One of my son's 19 year old school mates just moved into a group home and is living with two other young adult men with autism in a suburban gated community complete with a community swimming pool (important to him because according to his mother he would live in a swimming pool if given the opportunity). His parents don't have the needed resources in their home to provide him with the intense care he needs. Luckily they were able to find a group home that does and are pleased with the fit of neighborhood, house (both are of similar enough quality to their neighborhood and home), his housemates and the staff for their son. It is never easy for parents when their grown children leave home, but it was time. Just as it was time a few years ago for his older brother to move into the college dorm. When I spoke with his mother a few weeks ago I was happy to hear how well the new living arrangement is working out for everyone in the family.

For at least the past decade there has been a slow, quiet revolution placing people with developmental disabilities in integrated jobs within the community that is poised to go viral. Now all we need is a change in community attitude that should begin with the currently employed friends and family members of people with developmental disabilities thinking outside the box and figuring out how individuals with developmental disabilities with the right supports can become productive coworkers in their work places. My Catholic religion teaches that work is a duty and a right that stems both from necessity and the fact that work affirms the dignity of each of us. The Supreme Court's Olmstead decision guarantees that each of us is entitled by the US Constitution and laws to the fundamental right to work along with live and be educated in the least restrictive community integrated environment possible.

We have a decade to make this a reality for my 11 year old son. His school recently began building a formal vocational skills training program for its students. I look forward to helping them build their program. We already have a fledgling informal consortium of agencies sharing information about building integrated employment opportunities for people with developmental disabilities that we hope will encourage future partnerships among agencies. Currently I email like minded acquaintances from my network when I come across helpful info I think will be valuable to them. We now are talking about meeting regularly so we can better learn from one another. This is how it begins; changing attitudes and outlooks one person at a time until before we know it community integration for all becomes the new normal. Now to just get the staff at my son's school to internalize that toddlers go potty while students use the bathroom...