promisingly ominous

Atheism, Autism and, Apparently, Alliteration…Aplenty!

Month: January, 2015

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.