Sunday, September 27, 2009

Send In The Clowns

I've always loved to watch my children sleeping. Their soft faces cradled underneath prayer hands, cheeks flushed and hair damp with warmth -- to me, there is nothing so beautiful as that. Sometimes, when Sean is asleep, I will lie down next to him and hold him close, my palms on his beating chest and I will try to transfer as much love as I have to his heart -- to make a connection that transcends everyday affections. A love that will wash over him, that might provide some comfort, even healing. I have always put a lot of faith in love -- and now I have to believe that it could possibly save my son from retreating further into autism.

As silly as it may sound, it’s not nearly as silly as all the promises floating out there to cure autism and to recover our children. There was a time I believed in a lot of it. I removed all the gluten and casein in his diet for 9 months. It didn’t save him. I removed soy products for 3 months. It didn’t save him. I gave him enzymes. It didn’t save him. I gave him high doses of vitamin B-12. It didn't save him. I fed him only organic. It didn't save him. So I gave up on the notion of rescuing my son from the tower of Autism -- from donning my suit of armor and lugging battle axes over my weary shoulders and I climbed off my horse and fell to my knees and refused to move one tired muscle.

Truth is, I am no longer a warrior mom and I am okay with that. I have retired -- a five star general no longer pouring over maps and planning invasions. I needed to gather my strength for things that matter. No more birthday cake made out of potato flour and rice milk (hear the chorus of Woo-hoo from my children), no more sneaking vitamins into juice and no more selling my kidney and corneas to shop at exclusive grocery markets for expensive, hard-to-find items. It was time to find out what I was good at doing. And you know what? I discovered that the simplest things, holding my son while he sleeps, whispering in his ears that his Mommy loves him and is so proud of the boy he’s become, seems to work.

Autism is not a one size fit all disorder. It’s a spectrum that presents itself very uniquely with each diagnosed child. So why should we believe that there is a blanketed cure? This may work for some children and help alleviate symptoms and I am happy for those who find relief. There's nothing wrong with giving it a try. But, unfortunately, these cures often don't work for most children with autism. Why put that perception out there, anyways? This idea that autism is “curable.” It’s counterproductive to most of us who are doing all that we can and finding that solutions are not so easy as a vitamin supplement or diet change.

It’s dangerous to push this message out there into the public. What’s not to stop people from thinking,

“Well why don’t you just cure your child?”

Wouldn’t we all if it were that easy? As a community, we already feel stigmatized. This message that as a mother we have the power to cure our children just isn't realistic nor healthy.

There is a lot of pressure to be the Mom who not only can iron her Super Mom Cape with one hand but also peel potatoes and help with homework with the other. And it’s okay to not be that mom. Heck it’s close to impossible to be that mom. It’s perfectly fine to be the mom who puts on the red nose and rainbow colored wig and acts silly and lives in the moment. I can no longer join the ranks of the warrior mother. Instead, I am a clown mother. I want to pack myself into a mini-cooper with a bunch of clown moms and head out for a night of fun. I don’t want to obsess over how to "fix" my child but instead learn to accept him for the boy he is. I don’t want to sit in a chair with a Kleenex box in my lap anymore. I’m opting for a night with friends, a pitcher of margaritas and karaoke. Life is hard. Why make it harder than it already is?

I used to laugh a lot. I used to be so much fun. I want it back. I want to be happy -- in the moment -- unafraid of what my future holds and content with the life I have led so far. So for now, no more extreme changes in diet or supplements. Happiness, love and laughter seem to be the best medicine at the moment.

Sunday, September 20, 2009

One Stone in the Pond

The Balinese people do not let their babies’ feet touch the ground until 105 days have passed. During this time, they believe that babies are still pure and close to heaven and that grounding the child’s feet could leave them prone to evil spirits penetrating their bodies and souls. They perform a baptism after the three months have passed by blessing the child head to feet and letting the baby’s feet touch the earth. At this point, the baby is now born and no longer attached to heaven.

I have always had a soft spot for this belief -- the idea that babies are still secured to the heavens -- not entirely our own but a sharing between the spiritual and natural worlds. When my boys were babies they would stare intently at nothing, their eyes peaking with purposeful gaze and I often wondered if their tiny eyes were fixed on the ghosts of ancestors.

The older I get the more I am curious about my own spiritual development and what there is to learn in this lifetime. Are both my feet firmly planted into this world or could I possibly unearth myself and float freely into another realm?

Sometimes, when I am alone with my own thoughts and weighted with concerns and worries, I try to imagine that this life of mine is a starting point for something else. What that is, I’m not quite certain, but I often think that everyday I have opportunities to explore, decisions to make and I have to be aware of the implications and consequences -- how my choices affect not only my life but the lives of those who intersect mine. I want to challenge myself to think in these terms -- the ripple in the pond -- that every action has an equal and opposite reaction.

I’m not sure where I am going with this but what has me on this path is seeing a bumper sticker on a car -- a large, gas guzzling Ford F250. It read,

"Why Should I Pay For Your Health Insurance?”

I became quickly incensed. I am bothered that somebody might think this let alone shop around for a bumper sticker to declare this. Most people, like me, who have someone they love that is uninsurable aren’t looking for someone to pay for their insurance but rather compassion and understanding and options. I don’t expect anything free. Those in similar situations like me don’t either.

But those words hurt because they sounded like the shouts of a bully on a playground. “Why should I? Huh?” You know, the boy hurling the volleyball at your head or knocking you off a swing. As evolved, mature people, shouldn’t we demand more from ourselves and others -- to be more human and kind, not to behave in a perpetual state of arrested development?

We often talk about moral responsibilities and doing the right thing -- a popular chorus in politics. And yet when the rubber meets the road, some retreat and care only about how things affect them and don’t take into consideration how their actions impact others.

This truck also had a Jesus fish. Seriously, the irony there almost made me careen off the road. How on one hand can you say you’re a Christian and another place a childish taunt on your bumper -- a selfish, whiny and inaccurate holler? Why should I pay for your health insurance? Well, first, if you had been listening you’d realized that nobody is asking you to pay for my health insurance. Truth is you pay already every time an uninsured person shows up at an ER for medical treatment. If you pay taxes then your dollars go toward Medicare and state insurance programs -- which is health care. Nobody is asking this angry man in his truck to pay more -- what we want is reform -- to make insurance companies accountable and competitive and non-discriminatory and if they can’t be then they should be put out of business.

People rail about death panels -- walk a mile in my shoes and you might think that the death panels are actually the private health insurance companies who aren’t interested in health care but in profits and pleasing shareholders. An underwriter who sees Autism on my son’s application reads no further and reaches for a rubber stamp --the red inked DECLINE tattooed across the top of his application. In the eyes of private insurance companies my son has a scarlet letter sewn onto his chest -- a scar in the shape of an A = Autism = not worthy of insurance.

I am exhausted by the misinformation that is out there. When I am driving my autistic son to school and see a bumper sticker like this, I can’t help but think,

“Who will you answer to someday? How will you explain your anger? Your selfishness? Your ignorance?”

I want to stop that driver and introduce him to Sean. I want to tell him my story, that I am a mother who is trying my hardest to take care of my child -- to help him be all that he can. I want to tell him that what he so smugly sticks on his bumper affects me and others like me who want to believe that we live in a country that reaches out and pitches in and cares. I don’t want a penny from this man. What I want is something bigger than that, more valuable than coins or paper. It’s the currency of compassion and kindness and the generosity of spirit.

Sunday, September 13, 2009

These Are The Days

Sean had a good first week at school. I don’t want to get too excited. He often has these “honeymoon” phases -- everything is new and fresh. But somehow, picking him up from school, his shirt collars poking near his ears, a backpack slung over his growing shoulders and his freckled arms outstretched toward me, I felt that maybe this time might be different. He seemed happy and even content -- a boy that I had not seen in a long time.

The other night I was talking to a very close person to me, filling her in the boys week at school. I told her about Sean, about how he seemed to be adjusting to his new school quite well. But then I got overwhelmed with sadness and heard my voice crack. For some reason I couldn’t help but think (and say to her),

“What if these are the best days I am going to have with Sean? What if this is as good as it gets?”

Then I sobbed. I know it is foolish to try to look into the future -- there is no glassy orb of what lies ahead. But sometimes I have these thoughts and they weigh me down -- cut me at the knees and I’m rendered completely helpless and immobile.

She reminded me that all I have is today. I have no control of the future. And yet, sometimes I forgot that raising a child with autism probably won’t get “easier”. All the work and sweat doesn’t necessary pay-off. My husband reminds me that sometimes we just get better with dealing with this disorder and managing our expectations.

There was a time that I thought Sean would outgrow a lot of his autistic tendencies. He would grow older and begin to read cues better and respond more appropriately. Life would be easier. The truth is, he has improved greatly but he continues to get older and he appears more different as each day passes.

When Sean was three or four or five others just thought he was “acting out” or “being a brat”. But now that he is eight, most people realize that there is more to it and that something is amiss. In some ways, I am glad -- so tired of the looks and comments and the eye-rolls. And in other ways, I feel a great amount of sadness as I am starting to see my son through the eyes of others.

We are so used to Sean’s quirks and behaviors that we forget how truly different he is. I sometimes see how other children look at him -- the younger ones find him fascinating, they smile at him and try to imitate. His peers and children older than him sometimes look at him oddly, strangely -- they don’t know what to make of him. Some laugh at him while others seem to avoid him completely. I don’t know if this all registers with Sean. I hope, for the most part, it doesn’t make him feel bad about himself. I don’t think it does but sometimes if I laugh at something that he says because I think he’s being funny he will stop, his eyes narrowing and say,

“Don’t laugh at me.”

I will explain that I am not laughing at him but at how clever or funny he is. Still, I don’t know if knows the difference.

My very dear friend is right -- all I have is today, the here and now and it’s futile to try to predict the future or imagine what life will be like down the road. Maybe right now are the best days with Sean. Maybe the best days are ahead. Maybe it will be much more difficult down the road and maybe it won’t. Nobody really knows. What I know for certain is that I want to savor the good moments, the bricks of the school shining in late summer heat and the smiling boy running toward me and swimming in my arms.

Tuesday, September 8, 2009

Life's Lesson Plan

The boys went back to school today. The ritual begins, seasoned with nostalgia -- a bittersweet reminder of my own childhood, crawling out of the covers into morning darkness, the air thick with the end-of-summer-almost-fall feel. It’s the passing of time; filled with anticipation and new beginnings and heavy with memories fading like poloroids left out in sunlight, bleaching out the familiarity of smiles and eyes.

My oldest wondered about his new teacher. What would she be like? Would she have a quiet voice or loud? Would she give a lot of homework? Sean didn’t seem to share in any of those concerns, although he did say quite firmly that he wanted “hot lunch.“ The last week before the start of school had been like the last couple miles of a marathon -- my patience growing thin, almost threadbare, muscles snapping and mind melting. So today felt like my body leaning into the finish line, the ribbon falling at my feet and arms raised triumphantly.

Another year has passed. Another year begins. And soon another school photo will be placed in the frame in front of last year‘s photos and the school photos before, (smiles with missing teeth, cowlicks and button noses) becoming distant glimpses of another time. My boys are growing, you can see it in these pictures, losing their softness and doughiness -- their features becoming sharper, more angular.

Last night the darkness creeped in, the moon hung high and fat, like a ripe peach waiting to be plucked from the sky. I pretended the moon was a lucky poker chip and slid it into the ante and thought, “I’m all in so let it ride.” I’m hoping this might be the year that I find Sean cuddled up in his bed reading a book or receive an invitation in the mailbox for a birthday party from a friend in his classroom. Maybe it will be the year where he looks at me plainly and kindly and says,

“It’s been hard inside here. But now it’s going to be okay. I’m here and I’ve missed too much.”

That’s the downfall to this time of year. The air moves like whispers, full of possibilities and magic, frosted in a sliver of impending cold. And yet there is only so much magic and often not enough to spread around. But I don’t want to give up hope. I am practical. I have played out the saddest scenarios in my head, hoping to build up permanent body armor underneath my aging skin. I don’t want to break too badly -- disappointment and expectations crumbling in my fists, rubbing dust from finger tips.

So today, I watch the army of yellow busses moving in teams to the schools, the exhaust like white hot steam and the sun struggling to crack the morning like the glossy golden yolk from an eggshell. And I can’t help but hope (or maybe dream) that this year might be a good one.

Thursday, September 3, 2009

To Health With It

I received another rejection letter from a health insurance carrier today. It reads, “Regretfully, the following applicant cannot be approved for coverage.

Applicant: Sean Bevins Reason: Autism”.

Sean has insurance now but anything associated with autism (doctor visits, therapies, medications) is not covered nor do the costs go toward our deductible. Worst of all, we don’t receive an R&C rate -- this is the reasonable and customary rate that insurance companies and doctors/clinics/ hospitals negotiate and put into contracts. This rate is substantially lower than the published rates at physicians’ offices and hospitals. So if a doctor visit costs $225 (and Sean’s visits do) we pay $225. If his autism was covered we would have an R&C rate, and we would pay that rate. Add to that, the $225 does not go toward our family deductible which is quite high. Each month we pay a premium and very little is covered. Our out-of-pocket costs and uncoverable expenses can be staggering. Speech therapy and occupational therapy (not covered) can run as much as $125 an hour. But for a child who struggles to communicate and/or has fine motor impairments these therapies are necessary.

It is strange to me to think we live in a country that allows insurance companies to discriminate against people, particularly children. My son didn’t elect to have autism. It is to no fault of his that he has this. It’s a difficult and trying neurological disorder that not only exhausts us physically and mentally but also financially. And yet it’s perfectly legal for him to be denied coverage because he is autistic. Clearly, we wouldn’t deny somebody coverage due to their gender, race or religion, but it’s acceptable to deny them due to a disability.

The next step is to apply for a state plan that pools together high risk candidates. This will most likely be very expensive and have a high deductible but at least he might have basic coverage for autism. We are keeping are fingers crossed that he will qualify.

It’s interesting to me to hear and read about the current healthcare debate. The people opposing it don’t want government in their healthcare. They say this loudly and with such certainty. And yet I am completely baffled by the irony. Currently, there are nearly 40 million people in this country who have health insurance through Medicare (a government run plan). The nearly 40 million people covered under this government plan are mostly those who are 65 and older. I am glad that I live in a country that takes care of it’s aging population. However, I would like to see more of an effort to reach out to everyone, at the very least the underprivileged and/or disabled and I cannot fathom why this is such a contentious debate.

Also, the idea of a public option is exactly as it sounds, an option. If someone doesn’t desire it he/she doesn’t have to choose it. But for those of us who don’t have options, a plan that doesn’t exclude somebody due to a pre-existing condition -- in our case, our son’s autism, might be an option for us to consider purchasing. Also, it could extend options to those who have no health care benefits through their employers or are self-employed. As health insurance costs rise, less employers are able to offer affordable and inclusive healthcare benefits.

I know many families that cannot provide proven therapies for their disabled children because insurance companies deny them coverage or exhaust them in the fight. For some of these diseases, disorders and illnesses valuable time is ticking away and the window is closing for their children’s success and well-being.

We live in a country that really has taken the care out of healthcare. There is little money to be made in preventive care -- my current policy not only denies coverage for Sean’s autism but it also doesn’t cover immunizations, breast exams or pap smears. It’s much more lucrative to treat cancer than it is to conduct physicals and well-being check-ups. I don’t think that bodes well for a civilized country. I understand that financial costs need to be weighed but at what price do we write off children, particularly those who face adversity in their young lives everyday.

Sometimes it‘s important to tune out the noise and the scare tactics. Let us not forget how critical the art of listening really is. Most times it’s the calmer, more rationale voice that makes the most sense. Take out the my and the me and replace it with the us and the we. Life is not an individual sport -- it’s a team effort.