Dear Santa

December 25, 2011

Dear Santa,
Even though it’s 1:30 AM on Christmas morning, I have to believe the calendar is wrong. The date says December 25th, and I’ll admit it looks like Christmas with the lights and decorations, it even sounds like it. It just doesn’t feel like Christmas to me. No matter what I did this year, I just couldn’t capture that feeling.

Not being able to feel Christmas is quite sad for me, mainly because I (used to) love Christmas so much. I was that guy who couldn’t wait for Halloween to be over, just so he could start listening to Christmas music.  Like so many other things, autism has slowly stolen my ability to get in the Christmas spirit.

I know I need to find a way to worry less about things I can’t control, and in some way, that means I need to find a way to worry less about Bellamy. It is true that she has made big strides this year, but at the same time she’s getting bigger, stronger, and that means she is harder to control. When she does act out, things can get pretty bad. It seems the past few months have been a whirlwind that involves holding my breath each day as soon as I drop her off at school, only getting to exhale when I read her daily progress report. A bit of respite for an hour or two, then it’s back to the breath-holding again with hopes that her evening ABA therapy sessions go well. As a parent, you never get used to the sounds of distressed child, but as a parent of a child with autism, you never can escape those sounds. I know, at least for me, one of the reasons why I keep such a busy schedule is because it is a way of trying to escape the inescapable reality of autism.

As I wait for you to visit our house this year, I wanted to take a moment to put into words what has really been bothering me as of late, because it’s not just Bellamy’s condition. It is the fact that I realize that neglect is the real cost of this nearly all-consuming focus on one child. I also realize that I’m not the one who pays this cost, that bill gets paid by our other children, Chloé, Delaney, Maggie, and Campbell. We try our best and do what we can, but Denae and I both know it’s not fair, nor is it enough. Knowing this just adds more weight to what is already an almost-unbearable burden. I love my daughter Bellamy to death, but absolutely hate how autism has affected not just her life, but the lives of her four older sisters. Hate alone isn’t even a strong enough word, it really requires at least a paragraph or two of vulgar expletives, preferably authored by sailors.

Santa, if you could find a way to grant a grown-up kid like me a few of your magical wishes, I’d be forever grateful. Know that I would wish for those four wonderful girls to have back the parts of their childhood that autism stole away. To erase from their minds any of the traumatic episodes they’ve witnessed involving their baby sister. To have them forget that they ever heard me say any word that may have seemed hurtful, mean, or even sarcastic while I was battling all the things autism brings to bear on our daily lives. To help them understand that their parents are so incredibly proud of them, despite the fact that seeing both of us attend one of their events together is more rare than a white Christmas in Las Vegas.  Finally, I’d want them to understand how truly sorry I am for not being able to consistently be the father they deserve, and how much I wish with all my heart things were different.

So what do you say, St. Nick? I know that’s a lot of extra weight on your sleigh. If it can handle the load, do you think you can you fit that down the chimney along with the toys tonight? If not, maybe you have something in your bag that can help me learn how to slow down a little, to be more a little more patient, and give more time to my other children. Hopefully, at least that will help me try to give my kids the kind of Christmas I remember. The kind where magic happened. The kind where you couldn’t sleep because you were excited, not because of guilt or worry. Because those were fun, and I’d love for my daughters to know what that feels like.

Sincerely,
CB
(The kid that used to leave you an ice-cold bottle of Rainier)

About Words

January 13, 2011

Words.

I can’t recall any other time in my life where I’ve seen so much media attention paid to words.

I believe that words are powerful, not everyone agrees.

Sticks and stones?  Perhaps.

For some, words can inspire greatness or positive change.

For others, the same words can incite violence or hatred.

Some will argue that mere words are meaningless.

Some will argue that words are everything.

A bit of disclosure for new readers, my youngest daughter is affected by Autism Spectrum Disorder.  I’ll also add that I love her more than anyone could imagine.

Perhaps it’s the love that I have for this little girl that makes me sensitive to certain words.  Perhaps it’s some deep-seeded guilt that I have regarding something I did, or didn’t do, that caused her to be different than “societal norms”.

Whatever the real reason, I’ll admit that I’m particularly sensitive to one specific word.  That word is “retard” or “retarded”. (Feel free to “Spread the Word to End the Word”)

In many standardized tests, my daughter is indeed classified as “mentally retarded”.  It’s a technically correct diagnosis of her mental development and how it is slower than that of a typical person.  Unfortunately though, retarded is all to often used as a slur to belittle another person’s way of thinking or acting.  Sure, most intelligent adults know that retard means to slow.  But unless you are talking about a neurological diagnosis or using a chemical to slow an items propensity to burn (flame retardant), it’s the popular meaning of the word that matters.  Sometimes, it’s the perceived meaning that matters.

Words do evolve to have different popular meanings.  I doubt that very few people have ever used the word “terrific” to describe something the caused them to have a sense of terror or great fear.  However, that is the literal meaning of the word.   Technically, you’d be correct if you said “Those 9/11 hijackers were terrific!”.  Can you imagine backlash that would occur if a politician said that while campaigning for election?  That would be the ultimate “Macaca moment“.

Another word that “evolved” is gay.  Once a popular way to describe someone or something that was jovial, merry, or lively.  It didn’t necessarily mean happy, though it could be used to describe the outward appearance of happiness.  Stereotyping led to use of gay as euphemism for a person that was homosexual.  A euphemism was required because homosexuality was, and sadly still is, considered “wrong” by many in modern society. In an interesting turn of events, the people who were the subjects this euphemism adopted it as a label for themselves.  Unfortunately, gay is also used as a slur to depict something as the opposite of what would be described with words such as cool, stellar, and awesome.  The causal use of  gay as a slur also has an added negative implication when used towards a person.  An implication that something is so “wrong” about them that it would be prudent to question, or compare, their sexual orientation to that which is considered “right” .

Some words are slurs plain and simple, yet some people are granted a license to use them.  The “N-Word” is a perfect example of this.  A word that is rooted in slavery and racial segregation, is frequently used by those in the “Hip hop culture” to mean anything from friend to brother.  Some people struggle with the concept that a subset of a certain demographic can use words, that if used by people outside of this group, would be considered a hateful and racist slur.  I simply view the special license as vehicle for empowerment over prejudice and persecution.  However, most slurs don’t have a special license for use, nor a reason or desire to have one. Despite what Hollywood depicts, you’ll never hear a person with special needs, or those who care for them, say anything like “Yo!  Where my ‘tards at?”

In Monica & David, a wonderful film that documents the wedding and lives of a couple with Down Syndrome, both the bride and groom are asked if they knew what Down Syndrome was and whether or not they were affected by it.  Both said they knew what it was, though neither described it correctly.  I believe Monica said it had something to do with being in a wheel chair.  Both denied the fact that they had Down Syndrome.  Either they don’t see themselves, or don’t want others to view them as “different”.  They want what everyone wants, they want to belong.

What this tells me is that people with Down’s are just like everyone else. We all want to belong, and more importantly, we are all creatures of habit.  Things that differ from our “norm” make us uncomfortable, especially when we don’t take the time to fully understand what the difference really means.  Put slice of a “Supreme” pizza in front of a kid that has only ever had plain cheese pizza, and it will just sit there.  It’s different and this difference makes them uncomfortable, therefore it’s bad.  Race, religion, political views, sexual orientation, obesity, and disabilities are just a few of the things that can make someone feel uncomfortable about others.  Sadly, to get rid of this discomfort, it is easier to degrade differences than to understand them.  History has shown us that the more understanding and embracing of differences a society is, the more it thrives.  Likewise, the more a society practices degrading differences, the more isolated and polarized it becomes.  Modern American society definitely seems like the latter to me.

I have friends who often use the “R Word”, as do some people I work with. I know they are not trying to insult me or my child.  I try my best not to let their casual use of the word get to me, but I’d be lying if I said it did not.  Words don’t have to come from friends to hurt.  Even while an entire movie theater was in laughing fits over the “Ruh-Tard” scene in  The Hangover, my thoughts immediately went to my daughter. Granted, the humor was supposed to be about a mispronunciation of a word, but the subject of the mispronunciation was the character in the movie Rain Man, a man affected by Autism.  Of course, nothing I’ve experienced has caused hurt feelings or pain on the level that would bring about the end of a friendship, let alone drive one to resort to violence.  I’m not trying to play some sort of victim of society, I’m just trying to foster understanding.

In the past when I’ve challenged people on their use of the “R-Word”, they’ll usually apologize and admit to feeling embarrassed.  However, all to often, that embarrassment turns to defensiveness. You can’t imagine how many times I’ve heard “Oh come on, you know that’s not what I meant!  You know retarded means slow, right?” as a way to make amends.  Amends?  More like adding insult to injury.  If I am somehow hurt or offended because you chose to speak without thinking, implying that I have a lower intelligence level isn’t exactly the right approach to take.

Many people will dismiss the hurt caused by the use of casual slurs like the “R-Word” due to its prevalent use in pop-culture.  But let’s be honest, when a person or process is derogatorily referred to as “retarded”, it is meant to invoke imagery of those members of society who are affected by conditions such as Down Syndrome and Autism.  The point that is completely missed, is that I’m not hurt because I think you are intentionally being cruel to my child or that it will some how hurt her feelings.  I’m hurt because the use of this word as a casual slur is an just another painful reminder that someone I love, something I created, is different.  This difference makes them incapable of having, what most would call, a normal life.  A reminder that they are going to face a lifetime of challenges for which they do not possess the necessary skill sets to deal with, and probably never will.  A reminder that our society, as the widespread use of slurs and hate speech proves, is more often than not, cruel to those who are different.  Ultimately, it’s a reminder that I won’t always be around protect my defenseless child from harm.

If somehow I happen to escape these thoughts for a moment or two, whether at work or in social situations, it would be great if a casual slur didn’t end the brief respite I get from them.  Trust me, I don’t need another reminder about my daughter’s condition, the reality of our daily lives does a good enough job of that on its own.  Perhaps this can never be understood without experiencing it.

Since I wouldn’t wish a child with special needs on anyone, let’s use religion as an example that, at least statistically speaking, more people will identify with and be sensitive towards.

How would you feel if someone you loved was described as being like Lucifer?  Would you take offense?  Would your feelings be hurt?  Would you get angry?  Would you feel that your loved one was being called evil? Does your perception of the word “Lucifer” lead you to believe it holds the same meaning as “The Devil”/Satan/Beelzebub?

What if you were then told that “Lucifer” was a word from ancient Latin that literally meant the “bringer of light”.  A word that was used by the Greeks to describe or reference the “Morning Star”.  This “star” was actually the planet Venus, which was the brightest object in morning sky, right before the sunrise.  The appearance of Venus meant the Sun as about to rise, thus it was dubbed the “bringer of light”.  Would this make amends?  Would you just forgive the use of the word and how it made you feel?  Would you just laugh it off because, after all, you weren’t smart enough to understand the origin of the word?   Judging by my experience with people and religion, I doubt that would be the case.  Again, original or technical definitions rarely matter, only the popular ones do.  Perhaps it is now easier to see how the perceived meaning of a word can easily overshadow the original or intended meaning.

This past week, we saw a lot of people go from embarrassment to defensiveness trying to make amends over things that were said or posted before the tragedy that occurred in Tuscon.    Across the internet, embarrassing words and/or images that were perceived by some as suggesting or implying that it was acceptable to use a gun to solve political differences, were deleted as fast their opponents discovered them.  All of which was followed by defensive statements, that suggested(my perception) that any correlation or blame due to words that had been said in the past were somehow worse than the actual murders that took place.  Perceptions led to accusations about intent.  Implications of  low intelligence levels were made about the people that had these perceptions.  It got messy very quickly.  So quick in fact, that all of this started on the very same day that the tragedy took place.

Six people were murdered, yet arguing over words and images became the bigger story.  At the very least, I think that shows that the position of those who claim “mere words are meaningless” has been invalidated.  Words do have power, and how they are perceived is indeed “everything”.  Ultimately, each person chooses how they will react or respond to words.  Though it seems to me that whenever such a choice has to be made over words, they were either carelessly chosen or intentionally selected to provoke a reaction.

In a way, I feel fortunate that my first hand experience with Autism has allowed me to see that words are powerful and that the careless use of certain words can hurt, regardless of their intent.  Free speech is a wonderful thing, but it does not free one from the ramifications, repercussions, or responsibilities of their words.  I’m not suggesting that we should limit speech, but perhaps now would be a good time to start being more thoughtful and careful about the words we choose.  I’d like to think if everyone did this, we could get to a point where the use of violent rhetoric or hurtful slurs didn’t seem so acceptable.  I know I will continue to try my very best to choose words that focus on lifting other people up, because I know how it feels to be torn down by a word on a daily basis.

Air Quote *This*

September 24, 2010

Sharron Angle’s unbelievably simpleminded comments regarding Autism insurance coverage have angered this 40 year old registered Republican to the point that I’m leaving the GOP and will vote for Harry Reid.

I realize this is a long post. This is not about “Obamacare“ or “Big Government”. The CliffsNotes version of this post is that I pay a lot of money for private insurance, I’d like the right of using it to help my daughter who is affected by Autism. Republican and Tea Party candidate Sharron Angle has promised to revoke a recent law that would end years of discrimination and grant me this right.

A bit about me: I am a proud UNLV graduate and have been a Nevada resident since 1988. I pay my taxes and I vote. I’m friendly, and while I’m upside down on my house, I continue to pay my mortgage. I coach youth soccer and I drive four school carpools. My yard is tidy despite the fact that I can’t seem to keep my pool from becoming a swamp. In short, I’d like to think I am the type of neighbor everyone would enjoy having when they think of living in suburban America. I make a comfortable living working in the hi-tech industry for one of the largest software companies in the world. In addition to what my company pays for my family’s health insurance, I pay an additional $1,200 a month after taxes for premium coverage to ensure that my children have access to the doctor of our choice, at any time, and are never at the mercy of a HMO. This health insurance, that I pay for with money that I earned and payed taxes on, is supposed to cover the health needs of my entire family. The definition of my entire family includes me, my wife and five daughters, the youngest of which is affected by Autism.

Despite having this extensive private coverage, it is almost impossible for me to use my insurance towards any of the proven effective treatments and behavioral interventions geared towards Autism to help treat my daughter. These treatments are not the radical approaches, experimental techniques, or homeopathic remedies that spark controversies and debate. The treatments we seek and get denied coverage for are speech therapy, occupational therapy, and Applied Behavioral Analysis. Like Sharron Angle, most insurance companies put air quotes around Autism, indicating that they do not believe it is a valid medical condition that deserves coverage.

For the past three years we have been paying cash for these scientifically proven therapies and interventions, while also paying for insurance coverage we cannot use. We do so because our daughter needs these therapies to have some semblance of what most of us would call a normal life. She is our child, whom we love as much as any of our other four girls, and we will do what ever it takes to give her any advantage over her disorder. We are not looking for a handout, we simply want to use the insurance that we pay for, but are currently denied the right to do so.

This is exactly what the Autism Insurance Reform Bill (AB 162) was designed to do. It will finally bring an end to the discrimination that insurance companies have been practicing for years. It will finally allow families, who have private insurance and are affected by Autism, access to affordable, effective therapies and the professionals who perform them. Perhaps it will also stop the snake oil selling charlatans who prey on desperate parents looking for anything to make their life just a little more manageable. Sadly, (but understandably) many parents of children affected by Autism have resorted to a “try anything” mentality after having been continually denied access to the therapies, techniques, and interventions that do work by their private health insurance company. In most cases the “alternative” approaches to treating autism only result in lost money. In some cases, they result in the loss of an innocent life. Most importantly, I’d like to think that Nevada’s AB 162, and similar insurance reform laws being enacted around the country, will stop things like this from ever happening again.

But before a single Nevadan has had the chance to benefit from the Autism Insurance Reform Bill, Sharron Angle would like to get rid of it. In fact she promised to do so, and Sharron says she always keeps her promises (like her promise to debate Senator Reid on Live TV?). Is candidate Angle really that naive to think insurance companies will lower their premiums because they won’t have to cover Autism diagnosis and related therapies? The truth is that health insurance companies barely cover any of these therapies today by having ridiculously low lifetime maximums (they are less than I pay the each year for insurance premiums) and cruel pre-existing condition clauses, all while enjoying record profits. There is nothing wrong with a business being profitable, but when the gains are ill-gotten, they must be held accountable to the people.

On the few rare occasions that these therapies are actually covered by private insurance, the insurance companies will almost always refuse to pay the bill initially, despite the fact that your child has a medical diagnosis of Autism from a fully certified doctor. A doctor whom is on that insurance company’s approved list of physicians. Unfortunately, this has forced the those who specialize in health care for Autism related disorders to run a cash only business. They know the insurance companies too well, and after years of slow pay or no pay, insist on up front payment of services from their clients. From there it takes months to get reimbursed and it is rarely at the rate that your plan dictates. Insurance companies use the excuse that providers are “out of network” paying often less than 50% of the bill, yet they never offer any “in-network” alternatives. They typically deny reimbursements for the same exact therapy that you fought with their review board over, and got approval for, the month prior. They continually cite that “additional documentation is necessary” even though you’ve sent them the multi-page medical diagnosis so many times that you need to buy a new fax machine. In addition to the full time job of being “Mom and Dad” while working someplace that pays them actual dollars, parents are required to assume the roles of bill collectors, defense attorneys, and advocates when dealing with health insurance companies. If you work for a big enough company that provides a significant amount of revenue to these health insurance companies, you can usually take advantage of having a specialist from your benefits department assist in the above, but even then it is more stressful and frustrating than words can describe.

The irony here, a concept that I would venture to guess escapes Sharron Angle, is that the Autism Insurance Reform Bill was targeted towards those, who at least from a socioeconomic standpoint, would normally be considered her voter base. AB 162 is not “Obamacare”, rather it’s what other health care legislation should strive to be. It simply prevents private insurance companies from discriminating against those diagnosed with Autism Spectrum Disorder. It is no different than similar laws enacted which make it is illegal to drop coverage for someone who gets diagnosed with cancer or other serious illnesses that will prove costly from a care standpoint. To the people who blindly refer to laws like AB 162 as a “government run health plan”, you might be surprised to know that plenty of state, federal, and private programs already exist that will pay for these therapies in full with no cost to the families. These programs, designed to assist with the financial burdens encountered raising children with special needs, have existed through every GOP Presidency and GOP controlled congress since Nixon. However to qualify for these programs, a family needs to be around the poverty threshold financially. Again, from a purely socioeconomic standpoint, the people who qualify for these programs would not be considered the GOP voter base. She is not only misleading her own voters, but she is also hurting them financially. Neither she, nor her advisers are intelligent enough to realize this. Should Sharron Angle get elected and keep her promise to strike down AB 162, I would be far better off quitting my job and relying on the taxpayers in order to get my daughter the care she requires. And that, supporters of Sharron Angle, is the definition of irony.

While I’ve made a comfortable living since my 30′s, I know that I will most likely never be able to retire. Before Autism, we had a plan: 401K, Stocks, savings. Since my daughters diagnosis, I’ve cashed out my entire portfolio so she can receive the treatment she needs for her disorder. Treatment that I am denied coverage for by my private insurance company, regardless of the fact that I already pay them more than what most US citizens earn on a yearly basis for premium coverage.

Despite all of this, I really do consider myself fortunate because we can get my daughter some of the treatment she needs and that it is working. Most families forgo treatment all together because they simply can’t afford it even though their jobs provide them with private health insurance. For these families, and the millions of their children that are affected by Autism, the financial burden of their care will eventually fall on the taxpayers. Without fair access to the affordable and effective treatments that Autism Insurance Reform Bill provides, this burden will continue to grow.

Autism affects more children than childhood cancer, juvenile diabetes and pediatric AIDS combined, yet only receives less than 5% of research funding of any single one of those childhood diseases. From a National spending standpoint, Autism research is allocated a mere 0.5% of the National Institutes of Health research funds, despite the fact that incidence rates are rising. They are rising so quickly that some are forced to try to explain it away via their opinion that health care professionals are either getting at better at diagnosing Autism or worse at it. If the latter were true, then there should be 1 in 110 people across all age groups that are considered to be on the Autism Spectrum. Where are the millions of 30, 40, and 50 year old Americans that have this disorder? Studies show that they don’t exist even in a fraction of the same numbers that are occurring today. If the former were the case, why is this all of a sudden becoming an issue? Why does every school in the 5th largest school district in the US have a program dedicated to kids on the Autism Spectrum?

The rise in real medical diagnosis’s of Autism Spectrum Disorder(ASD) is a serious issue. I know this because I see the families affected by Autism every day. I know this because these numbers did not exist when I was of school age. I know this because most people had never heard the world Autism was until they saw Rain Man in 1988, yet expect my daughter to act like the character portrayed in that movie. I know this because I had four typical kids before Autism entered our lives, a disorder that now controls every single aspect of our daily lives. Those affected by ASD are not “Stupid. Or Lazy. Or Both” or “brats” nor do they “lack discipline at home“. They are our sons, our daughters, our loved ones whom have a real medical disorder that causes their brains to operate differently than typical people. Thus, they need to be taught differently, and they need to be treated with different therapies and interventions to help them succeed. You can bet there will be many more people affected by ASD in the near future until science can figure out what is going on.

Today Autism has no known cure, nor is there a scientifically agreed upon method to prevent it. I’m not here to argue Thermisol, pesticides, or food additives. The simple fact is that the therapies I discussed above, are the very same therapies that would be provided by Autism Insurance Reform Bill. These therapies are scientifically and socially proven to be effective in helping to those affected by the disorder. Not only can these therapies lead to a child’s first eye contact, their first smile, or even their first word ever, they are lifetime investments in that child. For many on the spectrum, these investments allow them to become productive and integrated members of our society. Productive, integrated citizens are contributors to society, not burdens upon it. History shows all too well that things that which we lack empathy for will cost us dearly.

Sharron Angle’s desire to eliminate the Autism Insurance Reform Bill will result in a financial crisis, the likes of which have never been witnessed. Obesity, a 100% preventable health issue, costs more than $100 billion dollars a year. Imagine what the cost of providing long term care and housing will be for a significant part of the population because they were denied access to the necessary social tools required to deal with society? I wish I could say Sharron Angle’s view on insurance coverage for those on the Autism Spectrum was just classic case of “penny wise, pound foolish”, but it is so much more than that.

It is financially irresponsible.

It is socially malicious.

It lacks the empathy that was once considered a core trait of being an American.

Sadly, it’s just more of the same from Sharron Angle. While I really hate to use political taglines and soundbites, candidate Angle has indeed proven to me that she is “too extreme”. But should I really expect anything less from a person who said they would counsel pregnant victims of rape and incest that “two wrongs don’t make a right,” and that it is possible to make “a lemon situation into lemonade“? Not only is she too extreme, she is dangerous for Nevadans and all Americans. Dangerous because she espouses blind hatred, indifference, and selfishness. These traits will destroy the America we all love. Please join me in voting for somebody other than Sharron Angle. If you won’t vote for Harry Reid, consider using the None Of The Above option. Nevada is the only state in the US which allows you this luxury.

To my (former) fellow conservatives who have read this far, please consider the slippery slope you are about to embark upon:

Republican and Tea Party candidate Sharron Angle doesn’t think I should have the right to use a service, that I legally purchased with my own money, for it’s intended purpose.

Republican and Tea Party candidate Sharron Angle is siding with “Big Business”, both of whom believe they know what is best for my family .

Republican and Tea Party candidate Sharron Angle, believes it’s the government’s job to stop me from using my own money to better the life of my family.

And you think she’s conservative?