THE BLOG
10/26/2008 05:12 am ET | Updated Nov 17, 2011

Navigating the Cone of Uncertainty

Louisa May Alcott once stated, "I am not afraid of storms for I am learning how to sail my ship."

Over the last ten years, I have been learning how to sail my ship in rough waters from the Hurricane of Autism blowing into my home in 1998 with the diagnosis of my son, Liam, to literal hurricanes like Andrew, Katrina, Rita and now, Gustav. During the Weather Channel's updates as Gustav entered the Gulf of Mexico, they threw out a new term again and again and it dawned on me that I have spent most of my adulthood navigating waters in The Cone of Uncertainty. The swells from the winds and waves of each storm over the last decade have come frighteningly close to drowning me but what is evident each time is that as they move over warmer and warmer waters increasing in intensity, so does my own strength and resolve to find the best in every situation.

For the rest of the country, Gustav was a potential repeat of Katrina and chance to get swept up by the pseudo-drama on the 24 hour news networks as the storm approached New Orleans over Labor Day weekend. Would Gustav have the same effects? Would the levees hold? Would there be the same death and destruction three years to the day of Katrina, or at least enough to warrant the cool logos and ominous theme music that introduced each update or return from commercial break?

As soon as the winds subsided in the Crescent City -- levees intact, the rest of the nation exhaled and got on with their lives. The sun came out. The media storm dissipated. A little to the northwest, Gustav destroyed my hometown of Baton Rouge and in a few short hours life immediately lost 100 years of progress.

Every third house in the Red Stick City had a giant tree sticking out of it. Mine was one of them. Amazingly enough, even in a society screaming to be green, downed trees aren't newsworthy to the national media unless they land on someone important even when thousands of them fall. Baton Rouge doesn't have millions of people who call it home so our power outages and economic disruptions compared to Houston, for example, who just endured Ike, are a drop in the hurricane aftermath media bucket. But even the hurricane force media winds have long since left Houstonians to pick up the pieces on their own as they chase after the next disaster hitting Wall Street or the bombing of a hotel in Pakistan.

If a tree falls in Baton Rouge, and the national media doesn't hear it, does it make a noise?

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It most certainly does.

Although it didn't receive the press coverage that Katrina did, our little Cajun Gustav quickly proved himself to be the second costliest hurricane in the history of Louisiana from property damage to economic disruption. His aftermath has silently marched on into the billions of dollars with no logos, no updates and no ominous theme music.

Despite preventative measures to keep my home free from harm by cutting down trees in my yard post Katrina , we returned from a quick Labor Day holiday to find a neighbor's tree crashed into my home just as the storm started to hit, blowing out windows, gashing the walls and completely filling up the yard. The trunk, lying on its side was taller than me and the branches were visible from the backyard peeking up over the top of my second story house. Its massive branches, each about 9" in diameter -- saplings in their own rite -- punctured the entire length of my roof like Swiss cheese. The waterfall of 24 plus inches that ensued over the next few days laid to waste all the effort and time that went into carefully rebuilding and repainting post Kat-Rita. Everything had to come out of my home due to threat of mold and mildew...whether it was directly ruined by the weather or not. Sorting through your things to determine what is necessary for the next few months or year, what needs to be thrown away, what can be salvaged and what can go into storage when you are alone, emotional, exhausted, hot and trying to get it packed up before the next giant storm breathing down everyone's neck hits just a few days later is a daunting task.

Riding out the storm is one thing. Picking up the aftermath of the storm is quite another. It has been over ten years since autism stormed into our home. I am still very much dealing with the aftermath and picking up the pieces of our lives. While the media has started to shed light on autism, even with three children being diagnosed every hour, today -- there is no catchy logo, no cool intro music or daily updates on the aftermath that millions of families out there in America are managing.

When the autism tree falls into one out of every 68 homes in America, and the national media doesn't hear it, does it make a noise?

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It should.

Our fickle media still hops from disaster location to disaster location failing to paint an accurate picture of how the Autism Category 5 health disaster has devastated our country. People know autism has hit land, but as they walk around in their sunny part of the country they cannot fathom the life interruption that comes along with a direct impact. It is a complicated story to explain to anyone who hasn't been on the ground to experience it for themselves. The pictures rarely do it justice and the economic fallout is practically impossible to put your hands around.

Simple math should do it.

According to a Harvard based study released by Michael Ganz in 2006, the societal cost of raising a child with autism is $3.2 million over their lifespan without appropriate interventions that doctors prescribe but most parents can't afford. In America alone, we add 72 children daily to our taxpayers bottom line which will translates into a societal cost of $230 million per day for each day that passes as we fiddle while Rome burns without any sense of urgency to find effective treatments and therapies to recover these children, silently allowing the aftermath to march into the hundreds of billions far surpassing the current $700 billion housing crisis facing us today but with no comparable bailout anywhere in sight.

Where are the difficult questions during debates and interviews being asked of our Presidential candidates to find out how they intend to address the autism crisis? Their statements on their websites, intended to throw our community a bone, are weak at best. Acknowledgment that autism exists is not enough anymore, gentlemen. Direct leadership is necessary to determine what is throwing these children in the abyss of autism in the first place and establishing a standardized method of recovery for them, if not arresting the development of autism in the first place. You are, after all, vying for the office of Commander in Chief who will appoint heads to the CDC, NIH, HHS, EPA and, as such, the buck most definitely stops with you. The past three administrations have failed to come out and survey the damage to the Autism Gulf Coast. The wreckage is there in plain sight but there is no leader walking among the ruins, talking to the people to let us know that help is actually on the way.
As people on the Gulf Coast, Florida and the autism community know all too well, when disaster strikes it is up to you to pull yourself up by your bootstraps and rebuild. The only way to do that is to keep a positive attitude, as best you can, no matter the circumstances.

The day following a hurricane is generally speaking the best weather we get around here during the summer. The monster storms suck up all the moisture so once it blows on through, the sun shines again and for a mere 24 hours, the weather is actually kind of nice. You wouldn't notice how nice it was if you hadn't been through hell 24 hours prior to it though. Similarly, you don't see the sunny days in your life without the storms.

Amidst Gustav's turmoil, I was reminded of all the blessings that we have living in this country. If the hurricane of autism hasn't hit you yet or you have never been through a natural disaster, take these simple blessings into account that you might otherwise take for granted.

Ice. We take ice for granted. I had an ice cold Coke the other day and after three days of drinking hot water that particular drink at that moment was quite possibly the most refreshing beverage to ever pass my lips. For those of you out there with ice makers in your refrigerator have an ice cold Coke and a smile.

Communication. When phone lines are down and cell phone towers are twisted into pretzels, you realize how important our ability to communicate truly is and that not being able to express how you feel can make you crazy. Every parent at one point or another feels like they are not communicating effectively with their children, especially if they are teenagers, but if you have the ability to have actual conversation with your child and you don't take advantage of that, you are missing out on an incredible opportunity. Thousands of families across the country with children with autism who wish, for even five minutes, they could have a chance to connect with them to find out what they think and feel. So for those of you out there who can have these conversations, for God's sake, put the cell phones while driving in your car if for nothing else than to communicate with your kids!

Electricity and the Internet. They buzz behind your walls without a second thought until you pay your bill or you go without it for an extended period of time. You don't realize how dependent we are as a society on electricity just for average daily life...access to the ATM and credit card machines to get money or make purchases, electricity to pump fuel pumps, to power up your computer, have light after dark, cook your food and wash your clothes. Even in a mobile world, you have no idea how much you rely on electricity until you sit in your car for an hour to charge your cell phone or laptop. You haven't lived until you have moved your belongings out of your home in the dark by flashlight because you ran out of daylight before the movers got there. For people who rely on the internet, like me, for employment, communication and information, going without it for any extended period of time is like falling into a worm hole somewhere in the universe.

A security system. If you have enough worldly possessions to warrant a security system then consider yourself to be among the most blessed people in the world. Sometimes, though, you have to monitor who goes out of your house. In moving from our home to our rental, I realized how much I rely on that little "ding" noise to let me know when I have an escapee. While Liam is more inclined to come back inside these days if he ventures out and is no longer the avid runner that he used to be, it is still terrifying that he might slip out undetected in an unfamiliar and still hazardous environment of torn up houses and downed electrical lines without any warning never to return. If you don't have to have your home locked up like Fort Knox due to autism, please note that the heat of summer has passed. It's fall. Open your windows, let some fresh air in and make your kids run in and out slamming the doors like wild banshees.

A wide variety of food and a hot meal. Sorry JIF, I will never eat peanut butter again. You have lost a customer. Not due to an inferior product on your part, just because honestly can't stick anymore peanut butter into my mouth without gagging. As a result of Liam's autism and special diet we have become accustomed to a very healthy diet full of organic fruits and veggies. While fast food is a blessing when you are hungry, I don't want to see a Whopper again for a long time either. I am jonesing for fresh produce. So is the management at Burger King. The sign hanging on the drive thru the other day said "Please be patient. We are out of tomatoes, lettuce and onions. Don't ask." So, Have It Your Way but don't get crazy. Products on the store shelves post hurricane are so weird and the only things left are things no one wants. For example, we live in a country with apparently at least 40 different kinds of mustard so here is a note to those manufacturers. Your products are the ones left on the shelves after everyone grabs the plain old French's. Want do know how effective your marketing for food products is? Show up after a hurricane and see what people pick to restock their refrigerators and what they leave on the shelves. Pardon me mustard entrepreneurs, but no one wants the Grey Poupon.

Insurance coverage for disasters. Everyone knows what insurance coverage is for, except apparently the insurance companies. In the wake of Gustav, many people around Baton Rouge woke up to the unpleasant notification of the "Katrina clause" which made their deductibles practically unattainable ranging anywhere from $15,000 to $62,000. Parents of children newly diagnosed with autism just woke up to the same nightmare with the autism riders on their policies that they never noticed. Parents can easily spend in excess of $50,000 out of pocket annually on prescribed treatments and therapies that are medically necessary for their children even though they have health insurance. Out of pocket expenses to rebuild your home either from a hurricane or autism can very quickly leave you in financial despair.

A roof over your heads, exterior walls. Our house wasn't the fanciest house in Baton Rouge, but it was our home. Few interior walls remain...soaked by rain the dry wall was useless and a mold hazard so most walls were removed, along with the ceilings, the carpeting, the wood floors and soggy, smelly insulation. The entire roof had to be removed and at the peak of one moment of sheer panic and anxiety, I stood in my dining room and looked through the second story master bedroom through the attic to the blue sky beyond it wondering how in the world I would get this storm under control. I love blue skies but I love to see them outside or through windows, not my rafters from the first floor.

Indoor plumbing. The joyful blessing of indoor plumbing should require no explanation. When Rita hit, she took out the plumbing to my home which took nearly 3 months to repair. The tree that creamed my house during Gustav managed to smack the patio right in the exact spot that has, once again, taken out the pipes below it. Sewage is pooling all over my back yard filling the cavernous ruts from the construction equipment required to excise the tree from my home. So for those of you with working toilets and water you can get from the tap that doesn't require boiling before consumption, be blessed and celebrate the next time you flush.

When a storm hits your life, whether it is an actual adverse weather event or a stressful situation, it is hard to back up and look for the blessings and opportunities. Everyone should be allowed a pity party when a storm hits. You have to get it out of your system -- whether that is by talking. Guilty. Throwing up. Guilty. Crying. Guilty. Screaming. Guilty. Being angry. Guilty again. But after all your tantruming, in the end, you can either wallow in it or get out of it.

People always say, "I can't imagine going through that." As opposed to what? Your home is often your largest investment outside of your children, and neither of them come with a refund if something goes awry. You don't really have any other choice but to pick up and rebuild!

It is so easy to be overwhelmed and let the storm winds blow all of your good attitude away with everything else. If a hurricane blows through your house, it will never be the same but once the winds die down, you can rebuild. Similarly, when autism blows through your home, it will never be the same and truth be told those tropical force winds might never leave, but you can adjust to a new life, rebuild and your child is counting on you to do that instead of wallowing in your own self pity and despair.

Challenges give way to new experiences. If not for having my house destroyed by a tree, being terrified of heights, I doubt I ever would have ridden in a cherry picker. Now I can scratch that off my bucket list.

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As things have calmed down and are getting closer to what my skewed view of what normal has become, I realize that the things of this world are extremely temporary and storms truly are here to help you learn how to sail the big ship of your life. I learned when Liam was diagnosed with autism how to appreciate and celebrate life's smallest of accomplishments. In the wake, I learned that there is an incredible community of people who are the smartest and most driven group of people I have ever come to love. I learned on 9/11 as the Towers crashed and my husband announced that he wanted a divorce that life was precious, short and sweet and mine needed to be lived to the fullest extent. I learned when my little brother died six months later that in addition to living my life, I needed to take risks, go out and do brave new things the same way he had done in his 23 short years on this planet. I learned from Katrina and Rita our belongings, even though we work hard for them, are absolutely replaceable.

The lessons the winds of Gustav taught me to be content wherever I find myself because despite what life throws at you true blessings are all around us everywhere we look.

Your home is definitely where your heart is and your life is most certainly what you make of it.