promisingly ominous

Atheism, Autism and, Apparently, Alliteration…Aplenty!

Tests, assessments…and paperwork

As any parent at any stage of the journey along the spectrum knows, the volume of tests and assessments you and your child go through is remarkable.

This is a sampling of the documents that – so far—have needed to be formulated, tests that needed to be taken, survey instruments that needed to be filled out and important notes that needed to be retained:

  • Screenings to measure IQ
  • Individualized Education Plan (IEP) copies from preschool on up
  • Individualized Service Plan (ISP) to guide state-funded therapies
  • Kindergarten evaluation and the state-required district evals every three years thereafter
  • Assessment and application for the Arizona Long-Term Care System (ALTCS)
  • Benefits statements and other insurance paperwork
  • Fragile X screening
  • Another genetics test I can’t remember right now
  • Glucose and other bloodwork for taking behavior meds
  • Ear and vision screenings before autism diagnosis
  • Notes from recommended-but-unneeded gastrointestinal doctor visit right after diagnosis
  • Endless survey instruments for parents and caregivers (daycare and then teachers)
  • The school’s Functional Behavior Assessment and resulting Behavior Intervention Plan
  • Daily behavior tracking sheets maintained by kindergarten and first grade aide
  • Developmental pediatrician notes
  • Quarterly speech therapy reports
  • Weekly feeding therapy reports
  • Records from regular visits with Division of Developmental Disabilities (DDD) caseworker
  • Notes, paperwork and ideas from autism programs, workshops and events

The fact that all of these things need to be done once or on an ongoing basis is something in itself. Your kid is poked and prodded along the way, and you are forever filling out forms and reading, reading, reading.

But the resulting volume of paperwork generated is what is truly astounding – and our home office is proof of that. There are files to be kept of all varieties. Where the heck is the most updated IEP at any given time? I have no idea. It’s there – I can find it with some digging and while enduring some grumbling and disdainful looks from the husband.

Organization is key. And, if you’re a parent who is naturally organized, you’re going to handle the task of autism-related paperwork really well. You’ll have master To Do lists of everything you were asked to follow up on at doctor appointments, and you’ll be able to readily determine whether the speech therapist’s latest activity is in line with their goals.

However…if you’re a parent for whom intense organization is but a dream, you’re going to forget to follow up on things your doctor told you to do between appointments, and said doctor (upon discovery of your lapses) will furrow a brow and be perceived by you to be silently judging you right there in the exam room…while you are silently judging yourself for failing miserably on behalf of your kid.

If I had a reliable scanner and the inclination, I might have scanned and electronically filed all of these years ago. I tried buying a massive drugstore binder and organizing things in plastic sheets within tabbed sections, but that soon became unworkable and therefore not maintained. Years of records have a way of overwhelming a binder quickly…and the kid is only 7.

I. NEED. AN. INTERN.

Sometimes I’m envious of stay-at-home moms because at least they have more time actually inside the place where the records are to be kept and, therefore, a chance at staying better organized. For me, my work office looks only slightly better than my home office when it comes to filing. There are many stacks in both locations.

If anyone has tips and tricks for how they stay organized in the realm of special needs paperwork, it would be so helpful to hear those ideas.

What I do believe

Sometimes, as an atheist (I still hate that word, I still hate that word), you begin to feel wrapped up in what you are NOT. What you do not believe. Thoughts you reject. Habits you do not keep. Traditions you do not observe.

I’m sure this is far from an original thought in the world of atheism, but I’m feeling the need to express what I DO believe in. And that’s my job to convey to my kids, right? As the country song goes (apologies to whoever’s it is), you’ve got to stand for something or you’ll fall for anything. And I don’t want them to fall into something as adults in order to fill some perceived void. I am convinced that it is possible to be ethical, to be principled, to be moral without religion.

Everything I learned of right and wrong as a kid was backed by the expectations reportedly carved on a pair of stone tablets or by Bible stories. They were good teaching tools, no doubt. And they were taught by my parents who, to toot their horns and not mine, did an extraordinary job of raising four girls who do right.

Today, I’m trying to figure out how to impart those lessons in a different way with, hopefully, the same results. The tricky part is that there’s no “hammer” in doing it this way. There are no sins to commit, no hell to fear, no thoughts to regret. It’s trickier to teach that one should be good simply for goodness’ sake.

Admittedly, I have almost no idea what I’m doing here when it comes to leading little lives, but I want to be courageous enough to forge on anyway, backed by faith in humanity and the determination that my children become good adults.

So, in that spirit, here are 12 beliefs I hold dear and intend to impart to our kids:

That people are basically good – Anne Frank said it best. Most people are decent and well-meaning. With several exceptions in history and in the current world, almost no one is wholly bad. In daily life, the truth of any two-sided situation is usually somewhere in the middle and the job is to find the compromise.

That life is amazing and precious – It truly is. Life in all its varieties – human, animal and plant – is something to be treasured and marveled at. I may not believe that it’s all here due to some grand, intentional design, but I’m nevertheless awed at its complexity and beauty.

That everyone deserves equal rights and respect – We don’t judge people based on anything but their character and we don’t attempt to tell anyone how to live their lives. We all deserve fundamental human rights.

That life is bittersweet – Times will be tough and times will fill you with joy. Don’t fight it – there is such beauty in that spectrum. Just strive to make the latter far outpace the former.

That it’s best to be honest – Life is so much easier when you are. You feel better and, being someone who can be trusted, you trust yourself and your character.

That you should be generous – Give money to charity. Give $10 to the homeless man on the corner without wondering what he’ll do with it later. Give time to charitable causes.

That you should be proud of your country – I well up at patriotic songs just like anyone else and I sincerely love this country. We are not faultless in world affairs or at home, but we are lucky to be Americans.

That you should be a loyal friend – Step up when people need you. Be there to talk about the big stuff and the little stuff. If you have found a good and true friend, ignore what others think of them. Let gossip die with you.

That hard work is satisfying – Give the best of yourself to your work and never settle for doing a passable job. Someone told me there are “hiders” and “seekers” in professional situations – always strive to be the seeker looking for new tasks and better ways to do things. When you see a problem coming down the road, cut it off at the pass.

That you should spit-shine your character – Don’t take stuff you didn’t earn. Don’t take shortcuts. Do the right thing even if no one will know. And, if they will know, resist taking credit.

That one should simply admit to a mistake – Don’t blame. Don’t make excuses. Apologize, set it right and do better next time.

That kindness and a smile take you really far – In my early 20s, I reveled in being brooding and pseudo-complex. I rarely smiled and opened myself up. Thankfully that has softened with age. It sounds trite, but the power of a genuine smile to brighten someone’s day is transformative. Show some teeth and watch other peoples’ faces – it works.

While not an exhaustive list, these are enough for now. After all, I have the rest of my life to preach these and other virtues to my kids. So much so that – fingers crossed – they’ll hear my harping voice even when I’m long gone.

HodgePodge – About this Series

It must have been spring 1991 or maybe the previous fall – senior year at my Arizona high school. I remember sitting in a classroom at my desk, which was positioned on the side of a large “U” seating pattern. The rest of the memory is pretty fuzzy, except for the light bulb moment.

My mind was wandering, so it must have been a math class. I was daydreaming about what I should do for a living after high school. Archaeology or anthropology? Nope, couldn’t hack the math. French? I loved it but I would have hated to specialize in just one thing.

And then it hit me – why should I have to pick one thing? So many topics and aspects of the world were fascinating that I couldn’t imagine sticking to one forever. My attention span wouldn’t allow it. But what type of career would allow me to explore an array of interests?

Journalism. That was it. I knew I enjoyed writing. And what little I must have known about journalism at the time did include an idea that they could become mini-experts in 1,000 different topics.

From that point on, I never wavered about what I’d major in and I got a journalism degree from the Walter Cronkite School of Journalism at Arizona State University.

All these years later, I haven’t changed. The world has millions of shiny objects to distract me with renewed interest in every aspect of life. Sometimes I wish I was one of those single-minded people with a consuming devotion to one topic. It seems appealing to mine the depths of a subject and get lost in the intricacies. But I know it wouldn’t suit me long term. I’ve got to flit from one thing to another – it’s just me.

This series of posts – HodgePodge – is just that. This is where I’d like to explore anything that doesn’t fit within the other topics on this blog. French and France. Mosaics. Film festivals and movie sets and screenwriting. Anything. Everything. Will you indulge me?

Spectrum – About this Series

The ultrasound technician lied to us.

Prone on the examining table with the husband beside me, belly covered in goopy gel, we had just been told that the 20-or-so-week baby inside was a boy. It made me weepy, which isn’t really characteristic. I felt overwhelmed and happy.

We had a few moments earlier told the tech that the little bugger inside had a sister, approaching two years old, waiting for him to arrive. So, after delivering the XY-chromosome news, she said something congratulatory and nice about how we had “a perfect little family going on.”

I remember it because I instantly felt that way, too. The perfect, nuclear family. Not lopsided, like my childhood with three sisters and no brothers. (Love you, girls!) Nope, this would be evenly distributed. Perfect in every way. Soccer games and ballet practice. Somebody would play the guitar and someone the piano. Life would be a veritable Disneyland commercial.

Around 12 months, that changed. Worry set in (mostly for me) because Hayes hadn’t really uttered a word. By 18 months, he was being evaluated by the state and was granted weekly speech therapy. Just before age 3, we got the diagnosis I’d known in my heart long before: autism. Somewhat mild on the spectrum.

So, yeah, I say with sarcasm that the pleasant technician lied to us that day. Heck, maybe even jinxed us. And while I’m trying to be funny – this is me, trying – I of course don’t even come close to meaning it. Life with Hayes can be challenging. But I love him, we love him, and we don’t want a do-over. We are in this together. We laugh every day, we wrestle, we cuddle, we learn from each other. He is sweet and affectionate and rambunctious and so smart.

A variety of platitudes could be offered in answer to the whole perfection dream. Ones like, “You wouldn’t have wanted a flawless life, anyway – how boring!”

That’s true, of course, though I’m ashamed to say I still catch creeping thoughts that mourn what might have been. Mostly I’m getting on with it and being as proactive as possible. I’m a big believer in connecting with resources and that’s what this series attempts to do – to connect families with information and anecdotes that might help their daily lives. If you get practical information you need and I can take a lesson from you at the same time, that’s the whole idea. There are so many clinical experts and so many everyday experts (read: parents) to tap for ideas.

Thousands and thousands of our kids are out there and we’re not as alone as we once might have been. Let’s love our kids, learn from each other and open a few minds, if we can. Sounds pretty perfect to me.

Good for Goodness’ Sake – About this Series

Doubts came relatively early to this former Roman Catholic girl’s mind.

One night, maybe around age 11 or 12, my parents were out for awhile. It may have been a date night or a simple trip to the grocery store but, by the time they returned, I announced that I must be Jewish.

While they were gone, I had gotten to thinking. This whole “Jesus” thing – it all of a sudden started to seem not very plausible. I’m supposed to believe that this guy got here the way he did, for the purpose he did, and left the way he did? After years of brown-and-yellow plaid school skirts and knowing all the words to hymns, after memorizing the Ten Commandments and attending mass most every Sunday, I had started to entertain doubts. I began wondering: how reasonable does the whole thing really sound?

The very thought was rebellion, I knew. But it struck my young mind like a ton of Torahs. If I didn’t believe in Jesus, that could only mean one thing: I must be Jewish. (All I knew at the time about the Jewish faith was that its followers didn’t believe in Jesus. The distant suburbs of Chicago in the 1970s and 80s weren’t exactly havens of religious or cultural diversity.)

I informed my parents of my newfound realization when they got home. The news did not go over well. I can’t remember what specifically they said, but basically they nipped it in the bud. And there went my religious questioning for the next five or six years.

By the time the sacrament of confirmation came around at 16, my heart wasn’t in it anymore. College and more critical thinking brought me to the conclusion that I wasn’t just not Catholic. I wasn’t just agnostic, either. I was a full-on atheist, though I cringe at the label to this day.

Since then I have explored the thoughts of thinkers much smarter than I’ll ever be. Most atheists or free thinkers who have kids are like me – we aren’t likely to sue the school district or campaign to omit “God” from the Pledge of Allegiance. Although those paths may be right for some people and for some situations. Most of us just want our kids to be treated with respect and for them to reciprocate that respect with their peers. We want to expose them to lots of different thought so that, one day, they can make a choice that reflects their own evaluations.

In this series, I hope to relay the journey we’re going through, from the everyday questions about life and death to the proactive, hands-on exposures to world religions. I want to introduce you to other parents raising their children without religion and I want to meet authors who are exploring this topic today.

It’s scary out there as a first generation atheist. There’s no roadmap. But it’s time for me to be just a little bit brave and step out from the safety of private thoughts and into the world of responsible education.