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.