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...

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.

Waiting for the Other Shoe...

When we were dating my husband confided that one of the downsides of having Attention Deficit Disorder is that he spends life waiting for the other shoe to drop. Things improved after he began taking medicine almost 20 years ago and got even better when he married a wife who has his back and 99% of the time picks up his loose ends (even fixers are off their game once in a while). Yes, I was the annoying student and then the diligent lawyer who 99% of the time succeeded with hard work, talent and true grit always confident of my ability to at least get the job done. It wasn't until after our 19 month old son was diagnosed with autism that I truly began to understand my husband's world. Our son is unpredictable and needs care 24/7 especially when exploring the world. Impulsivity remains a challenge as does his sometimes unpredictable susceptibility to being overwhelmed and melting down with defensive behavior putting himself and others at risk for injury. Things have improved greatly for our son in the past two years but challenges still remain especially as he explores the world more. Because our son needs me to be hyper vigilant, I, too, spend my life waiting for that other shoe to drop or that door to close. Since our son began attending Chrysalis Academy 5 years ago I stopped waiting for the other shoe while he is in school unless the cell phone rings and the caller id says "Chrysalis Academy." It happened to me yesterday while I was in a meeting. Luckily the call was about a cancelled after school session not a problem with our son. However, until I walked out into the hall and returned the call, I felt myself dreading that other shoe. There are few places besides home, school and the homes of friends from the autism community who understand our challenges where we feel truly welcomed. When out in the rest of the world we don't take anything for granted because we know we could be a melt down away from a slammed door. This spring our family joined SpoFit, a fitness center especially for those with disabilities and their families. The staff and other members have been amazingly welcoming, tolerant and accommodating. However, you just never know. Last Tuesday our son was in the men's locker room with his father changing after swimming. Unbeknownst to me, my husband had been letting our son roam the men's locker room as long as he was dressed and within hearing distance. This time as his father was naked, our son left the locker room and decided to climb the SpoFit Rockwall two and a half stories to the top without a safety harness or someone belaying him. I was afraid that the SpoFit staff would decide that the liability was just too great and ask us not to return. Instead, the other shoe didn't drop and the door remains wide open. The staff recognized it was a misjudgment by a usually vigilant parent and offered to work with us to make sure that our son continues to grow while safely enjoying SpoFit. So, now we're all working on it!

What a Father Does

In September my husband and I will celebrate our 14th anniversary. Our life certainly doesn't look anything like the life we imagined and planned during our engagement, but whose does? Together we've faced our share of challenges and through it all he is my rock. While we disagree on politics (I married a conservative Republican 4th Degree Knight of Columbus Catholic although I have corrupted him a bit), we do agree on the most important thing. No matter what, our family comes first. When it was just the two of us he took chances with his career several times while I waited to restart my career as we first tried to have children. Circumstances changed (he was laid off and his preferred career path was outsourced to India, we have a child who has special needs) so for the past decade he has been in a job that he enjoys but isn't his dream job and my career has yet to restart as I am too busy taking care of our son. Neither of us regrets the choices we've made because we made them together based upon what was best for our family. Neither of us thinks that we've made "sacrifices." As our circumstances change we'll continue to re-evaluate the opportunities before us first always trying to do what is best for our family as we've done throughout our marriage. This weekend we heard about a father who put his own safety first and abandoned his children in a life threatening situation. My husband was very clear that he would put our son under a seat, wrap me around our son and then throw himself over me praying that any bullet wouldn't penetrate all of us. I'm not surprised by my husband's reaction and I have no doubt that he will do so instinctively if ever we find ourselves in such a nightmare. It's one of the many reasons I fell in love with him despite our differences. The past few months I've watched the media coverage of the Sandusky and Lynn trials. While I never did criminal defense work, I spent a decade doing Family Court defense work and represented more than my share of child abusers. Each of my clients got the best representation of which I was capable; especially those who morally repulsed me. I tried harder in those cases to ensure that my personal feelings didn't compromise my professional efforts. Those cases were the most challenging for me but I was able to sleep at night knowing that I fulfilled my professional oath while praying that the system worked as it was designed. When that was no longer true I moved on. In my old neighborhood sometimes street justice was discovered in the Dyke Road Ditch. It is the marshland between the Mohawk River and the Barge Canal that can be seen from the Dyke Road overpass above. In the past it was common after the spring thaw (in the Mohawk Valley the snow usually begins around Halloween and the grass is once again visible around Easter) to find a dead body or two in the Dyke Road Ditch. While I certainly don't embrace street justice, I am appalled that institutions like the Catholic Church and Penn State not only condoned such horrific child abuse but actively conspired to cover it up rather than first doing their best to protect those entrusted to their care and when they failed in that duty, seeking justice on their behalf. We Catholics call our priests "Father." In my lifetime I have been privileged to know many men who deserve that title. My father's best friend as I was growing up was a Catholic priest who was a Dutch Uncle to us. I have no doubt that just like my husband, he instinctively would have put himself between any innocent victim, especially a child, and danger because that is what a father does. I also have no doubt that he would have called the police if he knew that child abuse had occurred even if the abuser was a fellow priest because he understood that even though he had a duty to the Catholic Church, his higher duty was to be the embodiment of Christ on earth. While I continue to be deeply saddened by the behavior of the Catholic Church Hierarchy, too many of whom still don't understand their priestly vows, I cling to hope that those priests who do understand along with the nuns and the rest of us laity who make up "the Church" eventually will persevere and the institutional Catholic Church will change it's practices and actually follow it's mission to be the embodiment of Christ on earth. In the meantime, my husband and I remain as cautious and vigilant as possible about who we allow near our son as he is unable to protect himself because that's just what mothers and fathers do.

Don't Go 4 Wheeling in a Ford Focus

We did some back road exploring this afternoon in the middle of farm country near our suburban home. We ended up on a literal road to nowhere (it ended with a dirt road left & right). Along the way there we passed through standing water (it looked like it was from an irrigation leak) at one juncture and sand across the road at a wash left from the 4th of July rain. On the way back my husband misjudged the sand on the other side of the road and in a Gomer Pyle moment (Shazam!) we were stuck. It reached 109 today here in the Valley of the Sun. Thanks to the kindness of a stranger passing by who had shovels in the back of his truck (digging out didn't work) and then the farmer with a tractor he summoned, we were on our way after only 2 hours. Luckily we had plenty of gas (the car exhaust was unobstructed so we ran the air) and something to drink. I didn't kill my husband when he misjudged the sand & got stuck. I was frustrated but kept my cool when my cell phone had poor reception. That made calling AAA challenging although my husband finally got through while waiting for the farmer to arrive with his tractor. I even restrained myself from killing him when after all of that, my husband reached in his pocket and pulled out his work issued cell phone (plenty of bars) that he forgot was there. Fifteen minutes later the farmer came with his tractor and we were able to cancel AAA. We had to remain calm because our son was with us. He picks up on the emotions of those around him and easily overloads. I am proud to say that our son did not meltdown at all, not even when his father helped him pee outside in the hot sand. This is the second car emergency our son has dealt with in the past week. Last Sunday morning he and the woman who works with him were at the park in our housing development half a mile from the house and my car battery died (another AAA call as it is their warranted battery). When I didn't answer my cell phone (it needed to be charged) nor did my husband (his was dead too), they walked home. My son didn't meltdown then either. He has come so far in the past few years! I'm still thinking about killing my husband after my son goes to sleep, but I'll probably be over it by then. In a few months we'll be married 14 years. With him life is a series of little misadventures. I should be used to it by now. We make a pretty good team though. I'm the one who spotted the kind stranger driving by and my husband flagged him down. I'm the one who reminded him we pay AAA annually and he walked around until he could get a call out. When we got home we took a refreshing dip in our pool (another of his misadventures spanning a month of weekends to set up a "portable" above ground pool in a box) and everything looked much better. Tomorrow we'll laugh about our attempt at 4 wheeling in our Ford Focus and maybe we'll even choose another back road to explore.

I Have a Big Chest

A month ago I had a health scare. My blood pressure spiked while my husband was hospitalized with diverticulitis and then underwent a cardiac catherization (it was negative, he is fine). My EKG showed abnormal waves that could mean at some time in the past I had a heart attack or, according to my cardiologist (the same one who 2 years ago placed a stent in my asymptomatic husband's heart 2 cm from what they commonly call the "widow maker" to open a 99% blockage before he had one of those silent, but deadly heart attacks), it could just mean that I have a big chest. Wednesday I had an echocardiogram and a stress test. Besides being overweight and out of shape, my heart is working well. No previous heart attack (BTW, that I don't remember having), no cardiac damage of any kind. Great blood flow. Obviously I just have a large chest! However, it is a wake up call to change my life style and take care of myself. I don't need to be hit over the head again. So, since getting cleared last Wednesday by the cardiologist to exercise with no restrictions (this was a week before the echocardiogram & stress test), I've been using the SpoFit treadmill and treading water while my son is in school. I can no longer afford not to exercise and change my diet. I didn't like the alternatives especially now that my son has turned a corner. We all worked way too hard for me not to be around to enjoy the good stuff and celebrate my son's hard earned progress. I've given up my Focus office for the SpoFit and they have wifi! What more could I ask? ;)

Welcome to Holland

The new staffers at my son's school think he is among their easiest students. They have no idea about his challenges of even a few years ago. What finally made the difference for my son came at our darkest hour totally by accident. For 6 years he suffered from excruciating headaches so painful he tried to bang his head through our floors (here in AZ ground floors sit atop a concrete slab). He was in so much pain and we were so desperate after running out of specialists with whom to consult that we admitted him to the locked Biobehavior Unit at Phoenix Children's Hospital. Because the admitting psychiatrist preferred one medication over another (like I prefer Coke to Pepsi) he changed them out and for my son that has made all the difference. Even afterward the doctors were skeptical but you can't argue with the results. My son's psychiatrist told me during our last visit that since the medication change for my son, he has treated several other children with the same medication reaction now that he is aware of the possibility. Last year the psychiatrist added a new medication that also is making a major difference for my son. Suddenly my son's future is filled with many new possibilities as he continues to make progress. Amazing what you can learn when you aren't in so much pain that you put your head through the wall seeking relief to no avail. Many are familiar with the poem Welcome to Holland by Emily Perl Kingsley (http://www.lovethatmax.com/2011/03/interview-with-author-of-welcome-to.html) in which she analogizes raising a child with special needs to taking a trip to Holland when you expected to be taking a trip to Italy. Welcome to Beruit by Susan F. Rzucidlo (http://www.bbbautism.com/beginners_beirut.htm) is the corollary written by a parent raising a child with autism. I've never visited Holland or Beriut, but Italy is my second favorite country (after the USA). My husband and I spent 10 glorious days exploring Rome, Pisa, Florence and Venice during the 6 months we lived in Germany when we were first married. Midnight Mass at St. Peter's was a bucket list item along with meeting Justice Sandra Day O'Connor (food for thought for another blog entry). We hoped when our children were middle school age (that would be now) we'd find a way to score a 3 year corporate assignment in Europe, preferably Italy. Alas that opportunity is not to be... Instead we are in the AZ desert (my least favorite place) for the foreseeable future. In the past decade, without meaning to (we were too focused on daily survival to even notice), we've built a wonderful life and a home for ourselves in this God forsaken desert. We belong. We have friends who are our extended family. We celebrate holidays with them. We laugh, cry and kvetch together. They worry about us and we worry about them. Our son is surrounded by a loving community of friends who watch out for him. I may not like the desert and it certainly isn't Italy but I love our life here. Home is where your heart is and no matter what your head may say, you need to just have faith and follow your heart.

Why Not Us?

My husband's employer sent an email to all 3,500 employees this afternoon informing them that within the last 24 hours someone left two flashlights near businesses that exploded when innocent people picked them up and turned them on. My husband has never received a similar email during the 9+ years he has worked at the hospital. The Feds are on it and obviously we're all praying that they catch whomever is doing this before someone is seriously hurt. The first 6 months of our marriage we lived outside Nuremberg in Bavaria, Germany. My lasting memory of landing in Frankfort is of guards armed with Uzis patrolling on a catwalk above us. The only place I had ever seen patrolling armed guards before was at a US Military base or when crossing the border into Canada. However, their weapons always were in plain sight but holstered. During our German classes we were taught how to tone down our "Americanness." We were instructed to speak more quietly (Americans are loud and boisterous) and how to hold a knife and fork like Europeans so we couldn't be singled out as easily. The Germans understood that they had roughly the same chance of being a victim of terrorism violence as they had of being hit by a car while crossing the street. It was just a fact of life. When the planes crashed into the Twin Towers on 9/11 my husband and I were shocked, but not totally. We knew it was only a matter of time before, like the Germans and other Europeans, we Americans learned that we, too, have roughly the same chance of being a victim of terrorism violence as we have of being hit by a car while crossing the street. It is just a fact of life. This morning while working out at SpoFit (I'm not one of those zone people while exercising) I met a man who tripped over his wife's power wheelchair, never felt any pain from the injury and 6 operations later had to have his leg amputated. It is just a fact of life. Rather than bemoan his fate he was working out in the pool while innocently bantering with the Aquatics Director who easily is young enough to be his granddaughter and was flattered by his attention.

Build It And They Will Come

Last night during evening rush hour we had a dust storm followed by rain complete with high winds. Every Wednesday our routine for the past few months has been to pick up my husband at work (the hospital is half way between home and my son's school so we commute together) then go to the SpoFit (http:\\www.spofit.org) where my son climbs the Rockwall. The weather delayed our plans and cancelled our time in the SpoFit pool but as soon as the storm broke we jumped on the freeway and headed out. SpoFit has a Kids Corner program where the staff plays organized games with the kids. Last night it was just my son zooming around on a gym scooter and trying his best to shoot hoops along with my husband. We now are adding Kids Corner on Tuesdays, Wednesdays and Thursday's to our routine. Swim lessons begin in a few weeks and over break my son will be attending 3 weeks of summer camp for a few hours on Mondays, Wednesdays and Fridays. Afterward we'll swim. SpoFit is the best kept secret in town. It was built with money from City of Phoenix municipal bonds and is for people with disabilities and their families. A family membership only costs us $60 per month. Like everything else it is a drive, but watching my son and his father on those gym scooters last night was well worth the 40 minute drive even during a storm. While we love having the facility all to ourselves, I am amazed it isn't crowded. Enjoying the local Y a few miles from our house isn't an option right now but we hope after spending time at SpoFit it will become one. Integration as much as possible always is our goal. I had brunch with some of the moms from my son's school today. Word of SpoFit is beginning to circulate among the autism community. It will be fun watching it go viral. We like that our son meets people with different challenges and that it reminds us we are part of the larger disability community not just autism land. We're going to continue enjoying having the facility to ourselves for now because very soon it will be humming.

Routine Is Everything

For the past few weeks I've been up a few hours earlier than the usual 6 am. My husband's work hours shifted to accommodate a coworker's vacation and for some reason our son has been waking up early to pee and staying awake. Routine is everything when raising a child with autism, especially one who can not yet communicate using words. The predictability of a routine and advance warning about changes makes him feel more secure in a world that constantly threatens to overwhelm him because his body just doesn't regulate itself very well. My natural talent for thinking and acting quickly on my feet gave me an edge during witness cross examination and now enables me to be a clairvoyant mind reader. Maybe in my next career I'll be a Mentalist. As long as I am prepared enough for the three of us and we remember to forewarn our son whenever possible about changes, everyday life runs relatively smoothly. Although my husband has an ADD diagnosis and is somewhere on the autism spectrum, luckily he has no problem navigating change for himself. Over the years he's developed small routines and rituals that help him be prepared for life's contingencies. My husband is so successful that other people have no clue that transition is a challenge for him. Over the past decade he also has gotten pretty good at making sure he is prepared for most predictable contingencies regarding our son, but my husband will never be a clairvoyant mind reader. That remains my job. Last night I visited a friend who is in the hospital. She has been in excruciating pain for the past 5 weeks all the while keeping her plates spinning. She home schools her two sons, each of whom has his own special needs. Add in her daughter who has her own health issues and a few weeks ago just delivered her 2nd baby within 16 months. Then there is her brother-in-law who is still sleeping on her couch after a year and a half while trying to secure employment. My friend is viewing her hospital stay as much needed time away from the demands of her family so she can heal. She has no choice. Her body said enough. Now it is her turn. She gave her husband a detailed list and so far he is surviving after 2 days of holding down the fort. Things may not be done up to her standards but everyone in her family remains alive and well. Every once in a while even clairvoyant mind readers need a break as long as we prepare everyone else in advance for this contingency.

We've Come So Far But We Still Have So Much Farther Left to Go

I read on FaceBook this morning that the son of a friend is graduating from high school next weekend and headed to college. Not that surprising as most of my peers (those who didn't wait like me until age 39 to begin having children) are now in that home stretch parenting time. What is surprising is that a decade ago college really wasn't seen as a viable option for this child because he has autism. However, he has an advantage that should never be underestimated. His mother is a tireless advocate for her children and for countless others. As a professional advocate she helps families, including her own, navigate "the system" so that they can secure the resources needed to help their children grow to their fullest potential. His mother is the older sister of one of my college roommates. My older sister, special education teacher extraordinaire, died a few months before my son was diagnosed with autism so I couldn't lean on my sister to help me figure out how to navigate " the system." Knowing this, my college roommate shared her older sister with me when I needed her most. During the past decade I've often thought about my friends and their family even if I am the worst at keeping in touch as I struggle to deal with the here and now of my journey in autism land. During college and law school I spent countless hours as an extra child in their family. They lived 20 minutes away from school and we often spent Sunday afternoons complete with wonderful family dinners at their parents' and grandmother's home. Their parents were used to children as they had 7 of their own although I only had the privilege of meeting 5. Their oldest son died tragically in a car accident when he was a toddler and their 2nd son died tragically when he was a young adult and residing in a New York State institutional care facility for those with developmental disabilities. 50 years ago these amazing people were faced with Sophie's Choice. They were told the only way to help their son get the care he needed was to relinquish their parental rights and place him in an institution where he would be better off as would their other children be better off growing up without him. While they never talked about their children who were no longer with them, I have no doubt that these parents thought of them always and missed them terribly as they raised their other 5 children and welcomed strays like me into their home. After my friend's children (she has a younger daughter in addition to her graduating son) were diagnosed with autism, my friend's parents relocated from Albany, NY to Atlanta to help her care for their grandchildren. The more Grandma learned about autism, she realized that her 2nd son, too, had autism. Unfortunately this amazing mother and grandmother died last year so she won't be there to see her grandson graduate from high school, but I have no doubt she, her husband and older sons will be watching from above and cheering loudly. Today is a bittersweet day for our school community. Two years ago a bright star was tragically taken from us. He was a happy, vibrant 7 year old whose eyes sparkled with the mischief you just knew he was contemplating. He was beloved by all who knew him, especially those who worked with him at school and in his home program. I learned during my time in Family Court that some things are beyond my ken. I learned to stop asking why because there are some times the answer is not mine to know. So this morning my son and I stopped at the grocery store before school and he bought flowers and a fruit plate for his teacher and her staff. It is a small gesture, but it is the best we can offer to comfort our school community as they remember my son's classmate and friend. This morning the New York Times announced that NY Governor Cuomo is proposing creation of an agency to protect the rights of those with disabilities, including developmental disabilities (http://www.nytimes.com/2012/05/07/nyregion/governor-to-propose-new-agency-to-fight-abuse-of-disabled.html?_r=1&emc=tnt&tntemail0=y). Words can not express my sadness about the quality of life for too many people with developmental disabilities who reside in NY group homes. After Willowbrook we thought it could never happen again in New York especially since in the early '90's we closed the large institutions and moved people with developmental disabilities into smaller homes located within the community. In 1991 it was my privilege to be appointed Guardian ad Litem by the local Surrogate Court Judge for half a dozen former residents of the Rome, NY Intermediate Care Facility who recently were moved from the large institution (it befittingly became a prison). Like my friends' parents years before (their son resided in that Rome facility), the parents of my clients were required to relinquish their parental rights in order to get their children the care they needed. However, in 1991 New York State realized that it was in the best interest of my clients to encourage their parents or other close relatives to apply to Surrogate's Court to be appointed as guardian of their adult child. It was my job as Guardian ad Litem to be the eyes and ears of the Court and report on the appropriateness of these guardianship petitions. I found loving parents and caring staff. All of my clients appeared to be well cared for. I do take comfort that from what I gather from recent media reports, the group homes in Central New York appear to be different from some other places in New York State in that the vast majority of people who reside there appear still to be well taken care of. A couple years ago I sat on the AZ Dept. of Developmental Disabilities Sustainability Workgroup where we began the initial discussions regarding charting a course for the future AZ "system" to serve those with developmental disabilities. This work currently is happening at the Federal level (NCD Report: Exploring New Paradigms for the Developmental Disabilities Assistance & Bill of Rights Act http://www.ncd.gov/publications/2012/Apr222012/). Here's hoping as we go forward that quality of life remains our #1 concern.

We're Going to Heaven on the Subway

A few days ago the LA Times (http://www.latimes.com/news/local/la-me-0501-autism-hearing-20120501,0,6943341.story) reported on a hearing concerning the disparities in CA state funding spent on children with autism. I'm not surprised although I am chagrined that what is happening here in AZ, land of Libertarian anti-authoritarian self sufficiency, also is the norm in CA, the traditional mecca of Liberal leaning Progressives. For the past decade I've been referring to the AZ publicly funded "system" (healthcare, education and social service) for people, especially children, with autism as Middle Class Welfare. Despite AZ advances in diagnosing Hispanic children with ASD (http://www.cdc.gov/ncbddd/tenyears/documents/autism-event/ADDM_10yrs.pdf), the great majority of parents I meet in therapy center waiting rooms and local online autism parent support groups are overwhelmingly white, educated and middle class. A decade ago when my son was 1st diagnosed and I was struggling to secure critical early intervention services for him, during a public meeting the parent of an older child with autism admonished me to sit down and shut up because my son already was receiving more intervention than her son received at that age (she obviously was unaware of the difference early intervention can make). Even my son's developmental pediatrician initially questioned why he should help me secure additional services for my son when so many of his other patients had so much less intervention available to them. The Great Man was astonished that I was able to secure so many services so quickly but to me waiting 3 1/2 months for early intervention to begin was criminal. I have never requested anything from "the system" that wasn't 1st recommended by a treating professional. From the beginning the 1999 NYS Dept. of Health Clinical Guidelines (http://www.health.ny.gov/publications/4216.pdf) was my north star. Before it was available for free online I ordered my own copy. Would you expect any less of me? I may be stuck in this God forsaken desert because of my husband's job but that will never deter me from securing what my son needs to help him reach his fullest possible potential. A decade ago I had much to learn about AZ. The Great Man (a fellow New Yorker) reminded me countless times over the past decade that AZ is not NY. The Great Man and I immediately struck a deal those many years ago. The Great Man provides whatever scripts and reports (as long as the therapies are medically necessary in his professional opinion) I need to get my son what he needs and I share my experiences with the parents of the Great Man's other patients. It is a pact that has served my son and I hope many other children well especially as more parents of children diagnosed with autism at the same time and after my son reached across and back to pay it forward and share their experiences with other parents. Things here in AZ autism land were going pretty well until January 2009 when the economic bottom fell out and AZ made draconian cuts to public healthcare, education and social service funding. While we weren't as progressive as NY, CA, MA, NJ and some other states, we were moving forward and people with developmental disabilities, at least those whose parents or other advocates could navigate "the system," were receiving much of what they needed. After the Great Recession it became a very different ball game. Like most Americans I await the June US Supreme Court decisions regarding the constitutionality of the Affordable Care Act and AZ's SB1070. Unlike many Arizonans, my primary concern isn't illegal immigration law enforcement. I worry about Federalism, States Rights and it's effect on public funding. We are poised on the precipice of Medicaid reform and depending upon what the Supreme Court says in June we will find ourselves trying to surf the new normal from either the crest or the trough. Last year when discussing redesigning "the system" I told a room full of people that we need to remember we're going to heaven on the subway. For Christmas 1978 my friend Fr. Mike Bassano gave me a copy of Michel Quoist's Prayers (http://books.google.com/books?id=SXes4G5IToMC&pg=PA26&lpg=PA26&dq=michel+quoist+prayers+subway&source=bl&ots=xl7U-0WnUt&sig=cMxWBRfPKKlyZgZQkfnlkMrEd74&hl=en&sa=X&ei=dyOkT-THN8HjiAL0tvC-Aw&ved=0CHAQ6AEwAw#v=onepage&q=michel%20quoist%20prayers%20subway&f=false). The Subway has helped guide me all these years. While I am here in the desert tilting at windmills Mike Bassano is a MaryKnoll Missionary in Tanzania (http://www.fathermikebook.com/, fodder for another post). My prayer continues that as we redesign "the system" we use public funding more equitably so that all people with developmental disabilities, especially autism, have the therapies, supports and services they need to not only survive but to thrive. The Great Man and my other like minded friends don't worry so much about my son because they know my husband and I will take care of him. It is worrying about those other people with developmental disabilities who, for whatever reason, don't have advocates navigating "the system" on their behalf that keeps us up nights or in my case, increases my grey hair.

He said DaDa

When our son was born he was the most wanted child in the world. He still is. The first time I held him he looked at us and smiled. It wasn't gas. We saw it very clearly and it was the most beautiful thing we've ever seen. He knew exactly where he belonged. He was home. This evening our son called his father DaDa for the 1st time (I prompted him) and then without prompting presented his forehead near his father's lips because he wanted a kiss. After his parents cheering and laughing simmered down he said Ga (go) because he wanted to go for a car ride as his reward for doing something so monumental. Before we left I grabbed my cell phone, called my mother and prompted my son to say DaDa for his grandmother. My son said Ba (as in Bye) and then Ba again since the phone call was delaying his ride. With a bit more prompting he did say DaDa and Ga for his grandmother and then we took him for his ride. Earlier today I showed my son Italian kisses. You grab the child with a hand on each side of their face and plant several loud smacks on each cheek. The louder and wetter the better. My grandmother gave us the best kisses and my mother in her turn gave them to my 3 nephews. When my parents last visited a few years ago my mother tried to give my son those kisses and he pulled away because he was too overwhelmed. A few minutes ago not only did my son come to me and request those Italian kisses, but he removed his head phones (he has auditory hypersensitivity) so I could better grab his face. You can bet Gramma will be showering him with kisses when she sees him in Portland this August. After all that I saw practicing in Family Court, I never once asked "why me?" when told my son has autism. I knew the more appropriate question was "why not me?" They told us that if he didn't talk by age 5 he'd never talk but I know better. The flip side of "why not me" is "It ain't over til it's over." Even when my son's speech therapist shared with me last month that she thought he might be on the verge of a break through, she was hesitant to get my hopes up. Later that day he said bubble when prompted. He works very hard and the progress slowly keeps coming. We understand that because of the apraxia and autism we are in unchartered waters. We have no idea what my son's future will be, but we know we'll find out together. Until I see otherwise, as far as I'm concerned, the future is filled with possibilities. My son inherited my persistence and my tenacity so we shall see what we shall see when we see it and you can take that to the Bank of Frank.We waited a decade before he said DaDa to his father. We have a lifetime.

The Bank of Frank

If you ask my husband about our 1st introduction he'll tell you I met him at church, took him to a bar, followed him home and then he took me to a homeless shelter. That is what happened, but not exactly. After closing my law practice I relocated to Raleigh, NC and stayed with my sister and her family for a few months while I figured out what I wanted to do with the rest of my life. Not excited with the bar scene, I attended a Catholic Singles Group to meet people. My future husband was standing next to me in the pizza line and inquired about my computer operating system (It was 1997). I couldn't wait for the line to finish until I met the rest of the group who all wanted me to Monday Morning Quarterback their divorces (previous occupational hazard). A few of us went out for a drink afterward and since he lived off the highway a few miles before my sister's town, I followed him (the Raleigh Beltline is not newbie friendly). My future husband, who organized the Singles Group volunteer activity of cooking breakfast at a homeless shelter one Saturday a month, invited me to join them so I did. My future husband was known within the singles group as every woman's safe date. I dubbed him the Bank of Frank because he is so trustworthy and reliable. Until he met me he was happy as the male buddy because every other woman scared him by viewing him as a project who needed to be fixed. After a decade in Family Court I had a good idea of what didn't work in a marriage. I am a fixer of problems but I know enough never to try and fix people. He fell in love waiting in that pizza line or maybe it was sitting at the bar later that clinched it. He can tell you exactly what I was wearing that night. Of course, like many on the autism spectrum, he thinks in pictures plus he has a photographic memory so it is a bit easier for him to remember all the small details. Before our 5th anniversary we spent the 1st six months of our marriage living in Germany (we traveled 22 out of 26 weekends) and then lived in 3 states. We survived a miscarriage, 2 layoffs (our son was 6 weeks for the 1st and the 2nd was 3 months after relo-ing to Phoenix), my sister's death 12 weeks after diagnosis from cancer and our 19 month old son being diagnosed with autism. My husband has unwavering faith. He just knows that no matter what, everything will work out fine. I, on the other hand, am more comfortable with faith by action. I believe that God helps he who helps himself because we all have the resources we need to meet our challenges. We just need to wake up, recognize the resources around us and then use them. During those rare times my faith waivers I rely on The Bank of Frank. He is my rock.

We're Going to the Zoo, Zoo, Zoo...

The Utica Zoo (http://www.uticazoo.org/) theme song is an earworm for everyone who originally hails from the Mohawk Valley in Central New York. Years later we still can hear the tune playing in our heads. Yesterday my son's school took our annual field trip to the Phoenix Zoo. (http://www.youtube.com/watch?v=vtHp5YNHQSQ&feature=youtube_gdata_player) No catchy theme song, but a good time was had by all. One of the staffers whose tenure at the school is longer than my son has attended remarked that this was the 1st year she saw me relaxed with a big smile during the zoo field trip. She is right. I didn't have a care in the world. My son made amazing progress this past year. He was with an amazing staffer who is young but extremely talented. He had money for drinks, snacks and a carousel ride for both of them although like the rest of the staffers, she refused to use my money to buy anything for herself. There was one child who had a meltdown but I only learned about it because I was with the staffer charged with ordering lunches for the group and she needed $$ to pay but at that moment the teacher with the $$ was busy with her student. This is why there is Visa. (Just one of the few duties of being Parents Assoc. President by Default ;) Within a few minutes the distressed student, teacher and assisting staffers calmly showed up for lunch. My son attends this amazing private school to which we commute 50 minutes each way through Phoenix during rush hour because our school district can't figure out how to properly educate my son. It isn't rocket science, but it does require well trained, talented staffers willing to think outside the box. Our district pays less in tuition to the private school and travel reimbursement (required by Federal Education Law) to me than it receives in aid from the State and the Feds to educate my son. The only reason the school district hasn't threatened to place my son in their in district self contained autism class is that they would rather not deal with me. They understand that until a Federal Judge orders otherwise my son will remain at the private school as long as he needs to be there. It is good to have my reputation precede me. Back in the decade I practiced law in the Mohawk Valley my fellow attorneys dubbed me a street fighter while friends affectionately called me Psycho Bitch Lawyer from Hell. Last month my son had a major break through. He is finding his voice and now will try to repeat sounds upon request. In addition to speech therapy during school (the entire program is communication enriched) where a speech therapist supervises an SLPA who does the majority of the one to one work, my son also has an hour of after school speech therapy where the school codirector/owner who is a speech therapist with a Ph.D. supervises another SLPA who also works with my son during school time. Then there is the consulting speech therapist who is a feeding specialist and a 4th speech therapist who is in charge of other students but the whole staff works as a team. Plus my son has an amazing teacher who is in charge of 15 students and 7 staffers. Then there is the sensory/OT team... All of this highly trained, amazingly talented staff for tuition that is about $9K less than the school district receives to educate my son. I shake my head at the state of public schools in AZ (our district is A+ rated but continually needing state assistance for it's autism program) and count my blessings that 5 years ago my son received a coveted spot at his amazing school! We 1st met the speech therapist who oversees my son's in school program when she was a college student working at another agency in their autism early intervention program. At 24 months my son was the youngest to attend the program and we did so with great trepidation because the management had a "my way or the highway" attitude that allowed very little individual tailoring for each child. I compared the program to what was available in the Mohawk Valley and it came up short but at that time was the only game in town. However, there were a few naturally talented shining stars, all of whom now work elsewhere, who over the past decade we've watched grow professionally; especially my son's speech therapist. My son did well in that 1st program and for a few years did ok in the home program they supervised until my son's headache pain intensified as did his self injurious and defensive behaviors (All behavior is communication and for 6 years he tried to tell us he was in intense pain from a medication no doctor suspected; welcome to autism land). It wasn't until my son began attending his private school that we found professionals who had a clue and were willing to think outside "the box" to really help him. An inadvertent med change 2 years ago seriously relieved his headache pain and the addition of a new medication last year has enabled him to better benefit from his school and home programs. My son was the March 2012 Student of the Month. Thanks to the amazing school staff and the amazing woman who works with him in his home program (she has been with us 5 years); another caring, patient, naturally talented person with a heart of gold who is beyond amazing! So now you understand why I spent yesterday at the Phoenix Zoo relaxed and grinning like a Cheshire Cat. :)

Brave New World

This morning while trying to brush his teeth my son screamed as if he were saying "no." He then commenced screaming some more as if he had just discovered his voice. My son had a major vocalization break through last month and is slowly exploring his brave new world. Later this morning my doctor cleared me to return in 6 months because my blood pressure is back within normal range as were the results all of the blood work from last Friday. It seems that a decade of living with continual stress finally registered and after dealing with my husband's 2 ER visits and 2 nights inpatient plus a cardiac cath (thank God it showed nothing new) last week, I literally dropped him off home Thursday afternoon and took myself to Urgent Care. My body finally just said enough. So I took 48 hours to be scared almost to death while I processed the possibilities and by Saturday afternoon was back in fixer mode with an action plan along with the new blood pressure meds. It's been a week of consuming fruits, veggies and healthy proteins while avoiding starch and sugar as much as possible. So far so good. I'm not craving chocolate chip cookies. It's a lifestyle change as I explore this brave new world of looking after myself first. Securing my oxygen mask first before taking care of everyone else always made sense but in practice there never seemed to be enough time. Now I am reminded I have no choice. Doubtless many discoveries and challenges await my son and me as we explore our brave new worlds. Each day holds new adventures. The wonderful thing is that no matter what, each morning we'll awaken to a brand new opportunity to explore some more.

The Fixer

I'm looking forward to watching tonight's episode of Scandal (I'll catch it on my iPad at my convenience). The lead character explained in the 1st episode that they are lawyers, but this is not a law firm. She is a fixer. While I don't spend my days as a high paid DC crisis manager, I, too, am a fixer and truth be told, am very good at it especially because I come by it naturally. Growing up my father was a Boy Scout Professional but it was my mother who taught us always to be prepared. The only time I remember seeing her overwhelmed was the afternoon she learned that her father died. I arrived home from school to see my father holding her as she quietly cried in what was meant to be a very private moment. It didn't last long because there was just too much to do. Mom was on a plane within a few hours leaving the rest of us knowing exactly what we each needed to do before our 10 hour drive the next morning. My mother's last job prior to retirement was at an insurance company processing claims where the majority of her coworkers were the same age as her children. They made Mom their Judge Judy years before any of us were introduced via TV to the Honorable Judith Schiendlin. Seriously, if only God let my mother run the world all would be right. Juggling a full caseload including regular court appearances in 4 different towns before seven different judges was good preparation for raising a child with autism. Contingency planning is second nature. I usually am prepared for the inevitable although a few weeks ago I missed the memo that no Wendy's in Tucson is open for breakfast (my son only eats Wendy's chicken nuggets or Tyson's from Costco). Had I known I would have packed some Tyson's because the hotel room had a microwave. We were in Tucson (close enough to Phoenix to drive home if necessary) practicing staying overnight in a hotel. We're training for an August road trip to Portland, OR - an adventure guaranteed to provide plenty of blogging material! I look forward to the day my son's health allows me to re-enter the workforce as a project consultant. My resume will read "Expert Fixer - All specs will be met. No detail too large or too small. Every challenge will be resolved. Every system will be navigated. Guaranteed at a minimum to have contingency plans A,B & C readily available for full implementation and continual revision at a moment's notice. If all hell breaks loose and worst comes to worst, I am comfortable flying by the seat of my pants and figuring it out as I go along." ;)

I Don't Know But We'll Find Out Together

The psychologist who 1st diagnosed my 19 month old son after observing him for 20 minutes was right, but we put no stock in her abilities because she did not follow the best practice diagnostic standard of care (a decade ago it was 2 observations, at least an hour each, a month apart) and her client interaction skills (with both child & parents) frankly sucked. So we waited 3 1/2 months for an appointment with the best developmental pediatrician in the Southwest who just happened to be employed at the same hospital as my husband. We knew he was the best because we had friends and contacts across the country vet his CV. While he isn't Oprah famous (his mentor T. Berry Brazelton is), his credentials are sterling. Before we could see the Great Man himself we saw his Fellow. This time the appointment was very different. The Fellow spent an hour on the floor trying to engage our son while speaking with his parents. We were impressed with her abilities and grateful for her patient interaction skills (with both child & parents), but my reaction when she told us that she was 90% certain the Great Man would diagnose our son with autism after the next month's appointment certainly did not communicate that. I was told later on that unfortunately my instinctive flip into cross examination mode blitzkrieged her. After our appointment she tearfully told the Great Man that she didn't think I liked her. While it certainly wasn't my finest professional moment as a litigator, especially one with a decade of experience daily navigating "the system" and duking it out in Family Court on behalf of my clients, I was simply doing what I needed to do at that moment on behalf of my son, my most important client, in the only way I was able (hence the caution about she who represents herself has an a$$ for an attorney). I needed immediate answers before I could fully process the diagnosis and proceed forward. In that moment my professionalism and the rules of good advocacy went out the window with everything else except pure maternal instinct. I come by my maternal instinct naturally. I am proud to be my mother's daughter. There is no question that if God ever allowed my mother to run the world all would be right. When we met with the Great Man I asked him what we could expect in our son's future. The Great Man told us he didn't know, but we'd find out together. This is the best gift (besides our son whom we affectionately describe as our greatest blessing; our greatest joy, our greatest responsibility and our greatest challenge) that anyone has ever given us. Not limiting our son's future makes all the difference for us as does understanding that even the best experts don't always have all the answers. Admitting he isn't omniscient but willing to stand beside his patients and their families as we work together (he obviously skipped God 101 in med school) to figure out how to help our child grow to his fullest possible potential is an integral part of what makes the Great Man the best. During the past decade I've exchanged experiences with parents of his other patients and when they asked him about their child's future, he told them the same thing; I don't know but we'll find out together. Much has changed in autism land in the past decade. We now know so much more about effective treatment and we have so much more reason to hope for our son's future. Because of the advice and guidance of the Great Man, our family has weathered difficult challenges clinging to hope no matter what; even despite the gospel according to some so called (and too often self proclaimed) experts. From the beginning my husband and I quickly learned to separate the wheat from the chafe and find the available treatments and services that worked best at that moment for our son. Through it all the Great Man remains right beside us on this journey just like he promised the day we first met him. Together we're discovering our son's future while helping him grow to his fullest potential, whatever that may be.

If He Were My Student I'd Be Proud

In the middle of a more challenging than usual week (husband visited the ER 2Xs, spent 2 nights inpatient and had a cardiac cath ~ no new issues to worry about, thank God, recovering well), the public school district psychologist phoned in (yes it's legal) to a tri-annual meeting (the legally mandated opportunity for my son's IEP Team to request formal educational testing if needed) held at my son's private school (the district pays his tuition). According to the rules of good advocacy I should have kept my mouth shut. My son attends an amazing school with an amazing staff where he gets the education program he needs without any interference (their annual contribution is the check) from our public school district personnel. But I just couldn't help myself. This was the 2nd scheduling of the meeting (she never bothered to call in the 1st time). The week before she actually did drive out (we commute to school 50 minutes each way thru downtown Phoenix during rush hour) to school to meet and observe my son for a whole hour (1st time in 5 years. Previous district observations lasted 5 minutes.) Of course the observation only happened after an email from me (she blew off the 1st scheduled observation again without any notice to his teacher) reminding her that as parents of a school district child and as taxpayers we expected to be treated with the same courtesy as any other district family. In concluding the meeting she said, "If he were my student I would be proud of him." I threw caution and the rules of good advocacy to the wind and replied, "He is your student." She then retorted, "You know what I mean" along with a lame explanation. Obviously my email wasn't as effective as it needed to be because she still didn't get it. But I do know EXACTLY what she really meant and after a decade of dealing with teachers, therapists, doctors and other direct service providers along with the support staff and administrators tasked with keeping "the system" working, I am sick of people paid to help my son who just "phone it in." There is no excuse, period. In the past decade I have wasted countless hours inspiring those paid to help my son simply to do their jobs by using any way at my disposal necessary (as long as it was legal). I especially have perfected the "you are so overworked and underpaid" empathy. In direct contrast, in the past decade we have been blessed with teachers, therapists, doctors and other direct service providers along with the support staff and administrators tasked with keeping "the system" working who truly are members of my son's team doing all they can to help him grow and reach his fullest potential. His school is staffed with enthusiastic "kids" (I can call them that now that I am 50) blessed with infinite patience for whom no challenge is too great. My son's pediatrician reads about treating my son's ailments (he is her most challenging patient) when she can't sleep at 2 am. Our good friend spent the last 6 years as head of our State's agency responsible for providing services for individuals with developmental disabilities and their families. While you couldn't have paid me, or most anyone else, all the tea in China to do her job, she hung in there and shepherded the agency through draconian cuts while doing everything humanly possible (although I do suspect a touch of divine intervention) to protect the most vulnerable. Every minute I spend supporting and encouraging these people is a privilege for which I am grateful.