July 6, 2013

Unlucky Thirteen

Posted in My Take on Autism tagged , , , , , , , at 10:22 am by autismmommytherapist

Nine years ago this fall, after several lovely Virginia Early Intervention providers had assessed my small son, I sat down with my mother at my dining room table and eagerly awaited their verdict on how many hours and types of therapies my recently diagnosed autistic toddler would soon receive at their hands.
After half an hour of regaling me with just how developmentally delayed my child was in all areas, they gave me their verdict on how much help I could expect, help I was happy to pay for, help I was desperate to accept.

The lovely women who had worked with my son for the better part of an afternoon offered me eight hours a month. Every autism expert in the nation recommended at least eighty. They held out an olive branch of six hours of occupational therapy, and two hours of speech.

ABA, or Applied Behavioral Analysis, which addresses the core deficits of autism and is exactly what my son so desperately required, was not on the table. Unlike New Jersey, in 2004 Virginia’s Early Intervention agency did not recognize a specific diagnosis of autism in their clients, and as such was not required to provide the instruction my son so dearly required.

I remember clear as day looking at my stunned mother across the table, putting my head in my hands, and wishing with all my heart I could just cry my guts out.

In that moment I knew my entire world had changed. Reality hit me like a tidal wave- I would have to get trained in the core therapies of autism, and deliver thirty to thirty-five hours a week of said therapy to my own autistic toddler. My husband’s insurance provided no respite from the costs, and even with me acting as his primary therapist we still needed a Board Certified Behavior Analyst to oversee his program and train me and any other therapists we hired, an out-of-pocket expense of over $2,000 per month.

Although Fairfax County Public Schools generously took autistic students the fall after they turned two I’d begun to hear unsettling things about my son’s future program, namely that he’d have no hope of ever having a one-to-one aide, an aspect of his education I felt strongly would be integral to his ever being an academic child. In my heart I wasn’t certain Justin should start before he was three-and-a-half in that environment, or if he should begin there at all.

I recall realizing even if I could master the intricacies of ABA and deliver excellent services to my son that I might not be able to keep up that pace for two years, and that he might receive even less intense instruction than he did at home when he finally entered a school program. I realized I would have to make my temporary leave of absence from teaching permanent, would have to perhaps forever put on hold my dreams of eventually becoming a school administrator.

I understood that despite having built a great life in this Washington, DC suburb over the past decade-and-a-half that our family would have to move, that our adopted state could not meet our child’s needs in either the short or the long run. I swallowed, and accepted that my current life, as I knew it, was over.

I also knew I was damn lucky I could teach him, and that we had the extravagant luxury of being able to relocate. I am certain most families do not.

I’ve never forgotten that day, both being distraught over the lack of services that were offered to me, and my even greater despair at the fact that our insurance would not cover us at all if we sought private providers for therapy. I’ve continued to follow Virginia’s journey over the last almost decade since we moved back to New Jersey, and was so grateful to see that Governor Bob McDonnell signed into HB-1106 into law, a bill which assures that providers of Applied Behavior Analysis (ABA) are covered under the law.

Even if Early Intervention services have not improved since then, this document will bring much needed relief to thousands of families, many of whom may not be as lucky as ours was. My heart rejoiced for them, even as my tired soul remembered those long days, weeks, months when I was my son’s primary provider, hoping every day I was giving him what he needed, both as his mom, and as his teacher.

I look at the mostly happy boy he is almost a decade later, and I believe I played a part in this outcome. I also believe no parent should ever have to do this for their own child.

According to the National Conference of State Legislatures, thirty-seven states and the District of Columbia now have laws related to autism and insurance coverage. This is a vast improvement from the dark ages of autism of sixty years ago, even a major improvement since we began our personal journey a decade past. Yet, thirteen states in our union have yet to ease the burden for families whose days are often extremely burdened by the disorder.

Children in thirteen states may still be denied required therapies because their parents can’t afford to hire outside providers to deliver core services their sons and daughters may require to communicate, to quell their behaviors, or simply to be happy and productive in a world which they must invariably find incredibly challenging. My heart goes out to all families still struggling to cover the often astronomical costs of autism, every single one.

Thirteen states. It is far too many. To those advocates fighting every day to change this statistic, I offer you continued hope, and courage.

May every single one of you win.

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.