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...

Thanksgiving

Thanksgiving is fast approaching but rather than gearing up for a whirlwind I've learned to appreciate and enjoy that less is more. Dinner will be the 3 of us. The turkey is already in the freezer (we've had years where our main course was Costco rotisserie chicken) awaiting its browning bag fate. I'll buy cranberries and green jello from the grocery store deli and roast vegetables. Our son will enjoy Tyson chicken nuggets from Costco (finally gone are the crisis years because Wendy's closes on Thanksgiving). I'm sure we'll take a long drive to occupy the time as has become our tradition.

We won't sit down to a table groaning with food surrounded by the chaos of family like in my previous life before I became my husband's wife and my son's mother. For the 1st 34 years of my life Thanksgiving was a Family Tradition. For 20 of those years my mother cooked for 20+ (she always made it look so easy but as a daughter in an Italian American family ~ my father of German descent thinks he's Italian ~ I always was by her side for the preparations) before it became too much and we then went to a local restaurant buffet for the next half dozen years. Every year family came in from out of state and it was a weekend long celebration. That was before we all grew up, grew older and those of us still living in our hometown either passed on or finally joined the others and moved away.

Before our son was born my husband and I spent a couple of potluck Thanksgivings with large gatherings of friends (one in our small apartment while living in Germany), one year we had a private beach picnic in Atlantic Beach, NC and the last we spent in San Antonio conceiving our son. We dreamed of hosting large gatherings of family and friends but the best laid schemes of mice and men...

I'm looking forward to Thanksgiving dinner this year. We have so much for which to give thanks. We  are together, healthy and relatively happy. Our son continues making amazing gains daily. On
Saturday I made our son shed a few tears when him playing with my hair just became too much and I told my son to go away. I hurt his feelings. Yesterday I asked my son where mine was as I unwrapped his candy so this morning during our commute without prompting he gave me 3 green apple jolly ranchers (the 1st was unwrapped and once licked; obviously not his favorite). I was reminded of how when growing up my mother used to split a roll of Necco wafers between me and my younger brother as long as we gave her the black ones.

I miss my extended family as we now are scattered all over the country but we'll call one another and this year maybe even FaceTime or Skype. The years of cousins washing Thanksgiving dishes together, clubbing Friday night and then watching Disco Beaver from Outer Space late Saturday night with my grandmother right in the middle of it all are long passed. However, I'm looking forward to the here and now of maybe cuddling with my husband and son in front of our fireplace and relaxing after a long ride and a Thanksgiving Dinner that was just right for us.