September 9, 2010

The Hundredths Place

Posted in My Take on Autism tagged , , , , at 6:28 am by autismmommytherapist

It was all because of a tiny, innocuous zero, a place holder, a value representing nothing. Our wonderful private speech therapist forgot to scribe two zeros after the decimal on our weekly receipt, and when my husband submitted our claim to insurance, it was flagged. Apparently the numbers inscribed to the left of the decimal when accompanied by one sole zero to the right indicate a visit to the ear, nose, and throat specialist (until recently the one medical practitioner we’ve managed to avoid all of these years). While our speech therapist is quite erudite she did not attend medical school, hence my husband had to spend close to an hour explaining the situation to a representative from Blue Cross Blue Shield.

Fortunately this error had been replicated in the past, and eventually the correct diagnosis code was sorted out, the claim processed correctly. Since we only receive five free weekly visits a year I’m not quite certain it was worth my husband’s valuable time, but he assures me the conversation was necessary. I have the patience of a two-year-old when it comes to insurance claims, so I will remain eternally grateful he chose to take the bullet on this one. I am not a fan of paperwork.

It occurred to me as we concluded our discussion and he headed back to his office that life for this family now seems to gravitate toward this encounter with the hundredths place, that having two autistic children for the most part seems more like an aggravating situation rather than the devastating, overwhelming tragedy it appeared to be only a few short years ago. We are no longer plagued by daily tantrums from our oldest son, have relinquished dodging his fingernails as he’d try to pinch his way to getting his needs met, his frustrations realized. I am spared witnessing the slow, horrifying descent into silence of my youngest child, through with longing to see his core self replace the almost mute, miserable, perseverative boy that autism temporarily left behind in its wake. We all (generally) sleep through the night now, engage frequently in some semblance of a family outing, receive positive reports from the excellent staff at my sons’ respective schools. They are, for the most part, happy boys, eager to greet the day each morning, reluctant to leave us in the evening for what their parents hope will be a good night’s sleep. It’s not the Cleavers here, but it’s not the Gosselins either. Believe me, I’m grateful.

And yet.

I am relieved we have finally arrived at a place where daily life is not so eternally dire. It’s taken me a long time to get to this locale, but I realized for the past two years I have been in a way holding my breath, searching for the bright side. Perhaps I have been bargaining with myself or whatever higher power exists out there that if Justin would stop being aggressive, and Zachary would resume talking, that I would cease complaining about the ancillary conditions of autism, the sand-in-your-eye, paper-cut aspects that seem to perpetually exist in our world. For the longest time I’ve held them all in, the minor and major irritations that pervade our family life, that insert themselves into every corner of our existence.

Now that we’ve finally transcended the darkest place with both of our children, an environ which I hope we are fortunate enough never to visit again, I feel ready to conquer my next battle. Trust me, it will be a Herculean effort by any account, but it’s now time for me to learn relinquish the smaller, yet still significantly soul-sucking irritations. Here I go:

  • Despite having successfully run classrooms of thirty-five pre-adolescents, I cannot safely manage having both of my children alone with me in public. This is not limited to, but includes, my own backyard.
  • My oldest son recently figured out how to escape from his car seat, navigating his way on one occasion into the trunk of my car as I bypassed several police cruisers on the scene of an accident. As a result of this gymnastic feat, when a passenger in my SUV he is now permanently encased in what I lovingly refer to as “our family strait-jacket”.
  • With both of my sons enrolled in special education programs, they have a collective entourage of over thirty people to thank with end-of-year gifts. Every year my husband forgets this. Every year we fight about it. The bright side is we’ve finally streamlined the entire experience to fifteen minutes.
  • We’ve basically eradicated the aggression in my oldest child, which precluded us from taking a number of trips and outings in the past. He has now decided however he will only remain outside of our home in any location for exactly thirty-seven minutes. Yes, I’ve timed it.
  • When I go to Great Adventure I have to wear my “old-lady shorts” into the park while I smuggle in GF/CF snacks, because there is literally not one food item in the entire park that does not contain gluten or casein within it. Trust me, I’ve heckled the food service workers. There’s not one.
  • My oldest son can’t tell me when he’s ill. Every single time I have to figure out, with my completely unhelpful general education background, if he’s simply in a foul mood, or really sick. For the most part, I suck at playing doctor.
  • Despite living in a state where parents took the time to badger our government long enough to force several insurance companies to finally start covering some of the necessary core services of autism, we cannot partake of the bounty because my husband’s insurance coverage originates in Virginia.

There’s more (there’s always more with any child), but that’s enough for today. I’m learning to let go, and perhaps, more importantly, telling myself I don’t have to experience guilt about feeling irritated over what autism brings into our lives, even if the event doesn’t entail drama worthy of a failing tv show during sweeps. It’s okay for me to get mad. It’s okay for me to express that. It’s better for me to let it go.

To everyone out there trying to do the same, no matter what the context, here’s to purging.

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6 Comments »

  1. Cathy M said,

    Have you tried the Angel Guard seat belt cover at My Precious Kid?

    Just a suggestion – the straitjacket idea appeals to me for the days when I am the one making the calls to the insurance company!! LOL

    • Hah! We have both, he can maneuver out of just the Angel Guard. Thanks for “both” suggestions however!

  2. misifusa said,

    Here’s to purging! Hear Hear! Cheers!

  3. Alice said,

    As a fellow mom of two children with autism, I say purging is needed on a regular basis!

    Is the straight-jacket expensive? I’ve looked at the humongous Britax special needs car seat and also the special harnesses, but both are really pricey.

    • Lifesaver makes the harness ($75ish) and AngelGuard makes the safety things you put over the seat belt ($15) so they can’t unhook it. Both things have helped IMMEASURABLY!!


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