June 22, 2013

The Costs of Autism

Posted in My Take on Autism tagged , , , , , , , at 10:16 am by autismmommytherapist

A while back I read an article on MSN money (truthfully, my husband sent me the link, most of the time I wouldn’t understand a thing on there) about the staggering lifetime costs of having a child with autism. I’m familiar with the statistics by now; that the costs to the country are around 137 billion; that outside therapies can carry a price tag of more than $50,000 out-of-pocket per year; that residential placements can cost $100,000 annually; that the total lifetime price of caring for a child, then an adult with the disorder, can total 3.2 million.

Generally my eyes start to glaze over when I read statistics about anything, but these numbers are personal. Very personal. You see, my eldest son resides in the category of autistic individuals who will require that lifetime care.

I can share with you all that his father and I are a bit short of the 3.2 million.

What the article does not include is all the ancillary costs that often come with the diagnosis, many of which had a direct effect on our family. After Justin was born I had fully anticipated returning to work when he was just over a year old. Just months after his first birthday we received his diagnosis, and our entire world changed in an instant.

A few weeks later, we learned that in Virginia Early Intervention did not provide any therapies that addressed the core deficits of autism, and what they did offer was literally one tenth of the number of hours Justin was supposed to receive to help him.

I realized I’d have to formally quit my job to deliver the thirty weekly therapeutic hours the experts recommended. I also realized going back to work when Justin eventually went to school was an impossible dream. At the time I labored as a Fairfax County VA regular education teacher. On a good week, I put in fifty hours- most weeks, it was closer to sixty.

Justin would need before and after care, and there was literally no one to provide it for him. I loved my boy, but the constant tantrums, the crying, and the bites and pinches bestowed upon anyone who displeased him did not make him an excellent candidate for anyone’s before and after care.

We’d already run through a few babysitters by that point, so that avenue was no guarantee either. We had no family in the area, no relatives able to watch our son mornings and afternoons. I can literally remember the day I sat on my couch in my living room, conflicting emotions racing through me. I was on one hand so grateful we could afford to live on a single salary, and that I had the capacity as a former educator to deliver Justin’s therapy to him.

On the other hand, I also remember the sinking feeling of knowing my administrator’s degree, and all the extra hours I served on committees at school and the leadership positions I’d taken, would most likely be for naught. My dream of following in my mother’s footsteps and having a career as an educational administrator would probably be thwarted by autism.

There was just no way around it- someone had to look after Justin, and that someone had to be one of his parents. Since Jeff made twice as much as his wife, it would have to be me. At least for the unforeseeable future, my working days were done.

Yet I’ll say this again- we were a lucky family to even have the choices we did. Many families, to this day, do not.

I think it’s clear from my essays how much I love my kids, and how proud I am of their collective character every day. I know much of what I write showcases their progress, and hopefully highlights this family’s ability to come to terms with autism and integrate it successfully into our lives. But I want to be careful not to paint a completely rosy picture of how life is for many families struggling just to make ends meet once autism has come knocking on their door.

Autism is often overwhelming. It is almost always very, very expensive. I’m writing this today because we were the fortunate family who received help from friends, from family; through the graciousness of my husband’s employer we were even able to relocate to New Jersey to address Justin’s educational needs, and be closer to family. Despite how insanely challenging the last decade has been, I consider our family to be lucky to have had any choices at all.

The cost of caring for an autistic individual is staggering. Often, the day-to-day challenges seem impossible to conquer, even when things are going well. And for many of us parents who know their child will require lifetime care, many years of which will be delivered when we’re dead, there is a sadness in that knowledge that resides with us always. At least it does for me, even when things are going well.

So please, if you know a family in your church or synagogue, your neighborhood, your child’s school, offer to help if you can. Babysit if you feel you can handle it, bring them a meal, offer a playdate for a sibling to give the mom or dad a break. At the least, when you see them, offer them a smile. As a recipient of several of these acts of kindness in the past I will tell you they mean the world, as all of these gifts helped me to navigate mine.

For whatever you can do, I thank you.

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February 2, 2011

Yes Virginia, There Might be a Santa Claus

Posted in My Take on Autism tagged , , , , , , at 11:28 am by autismmommytherapist

Back in 2004, when my husband, son and I were residents of the great state of Virginia, our eldest child Justin was diagnosed with Pervasive Developmental Disorder. He was only seventeen months old, which at that time was incredibly early to be identified, a fact which every professional we encountered told us was strongly in his favor. No one was suggesting he’d recover from autism, but the point that was brought home to me on every single one of our myriad doctor’s visits was this:  the only thing the multitude of autism professionals can agree upon is that early, and quality, intervention can make a huge difference in the progress these children make throughout their lifespan. I remember even through my despair being thrilled we had figured out his issues so soon in his young life, and being certain that help, indeed, would come. My mom had told me how comprehensive New Jersey’s therapeutic services were for the under three set, and I was certain, since I lived twenty minutes from the seat of our nation’s government, that Virginia would afford us similar assistance.

Soon, it became clear, I was dead wrong.

After our initial consultation with Virginia’s Early Intervention assessment team, we were told the sum total of therapeutic hours we would receive monthly would most likely number six, and if we pushed it, possibly eight. Occupational therapy services were offered, as were speech. Applied Behavioral Analysis hours were not considered, as Virginia’s Early Intervention program does not recognize a diagnosis of autism, even though said therapy addresses the core deficits of the disorder.

Although Fairfax County had made the magnanimous decision to accept children into their pre-school autism program the fall after they turned two, age-wise, Justin wasn’t yet eligible to enroll. Frankly, that meant any type of help he would receive would have to come from me. It meant making my temporary leave of absence from teaching permanent. We had to hire a Board Certified Behavior Analyst to come in twice a month and train me and our therapy team, all to the tune of $1200 monthly, a sum that did not include what we also paid our private therapists. The hours that Early Intervention offered us were a joke. I had a year left until Justin could enroll in school, into a program I was not certain would ultimately be able to meet his needs. My husband’s insurance covered none of our private BCBA’s inordinately expensive, yet necessary, instruction. We were existing on one salary.

In short, we were screwed.

Eventually, the lack of Early Intervention services, coupled with the fact that spending thirty hours a week trying to teach my own child how to sign for “ball” is insane, propelled us to relocate to New Jersey. Within weeks, we were granted almost twenty hours a week of a variety of therapies, including the Applied Behavioral Analysis hours so crucial to his development. I remained present for all of those hours until he began school in the fall, but throughout this period I always had another adult with whom to share the workload with Justin.

Honestly, during those months I felt like I was on vacation. A really good childless, island-hopping, pretty drink-profuse vacation.

Ironically, not too long after we moved back here, some amazing parental advocates convinced New Jersey to pass autism legislation, which has enabled many families to seek relief from their insurance companies. Services such as speech, occupational therapy, physical therapy and those gold-plated ABA hours are now being covered at least in part if you’re a subscriber to certain insurance policies. The legislation hasn’t fixed everything. There are still many families whose insurance providers render them ineligible to this legislation, many of whom are paying for those services anyway, emptying retirement funds and taking out second and third mortgages. Although we are quite fortunate not to fall into the latter category, we still cannot pull from New Jersey’s autism legislation trough. Even though we reside in the Garden State, my husband’s insurance coverage originates in Virginia, and as yet, comprehensive reform has not passed in Richmond.

Until, hopefully, today.

On January 27th, Virginia’s House Labor and Commerce Committees passed HB 2467. Virginia’s Senate Finance Committee is scheduled to hear their already passed version of the senate bill early this month. Today, on February 2, 2011, after many hours of diligent, behind-the-scenes work by politicians, parents, and advocates, Bill 2467 will finally grace the floor of the house as well. Even if this bill is signed into law I’m not certain it will help us financially, although it might assist us in mitigating the costs of Justin’s weekly speech therapy sessions. It will be months before the bill becomes law, and probably many more months before Jeff will be able to weave his way through the morass of his new insurance company’s rules. Ultimately, a pass in both the house and the senate may not benefit us at all.

But there is no doubt it will bring a sigh of relief to a multitude of families residing in what I consider to be my adopted state.

I have to share that I don’t ask the universe for much. I am, however, keeping all appendages crossed that this bill, this long-awaited piece of legislation, will pass. I’m hoping it becomes law, because children with autism are being diagnosed earlier and earlier, sometimes years before their public educational system is required to accommodate them. I’m eager for this legislation to pass in Virginia so that children can have access to services when they need them, not just when they’re deemed eligible for school. For once, I’m actually praying for the words on this bill to transform into law so that no other family will share my experience of those long, isolated fifteen months, endured just minutes from our nation’s capital.

I hope you will join me in thinking positive thoughts, so that for Virginia, there may indeed one day be a Santa Claus.

October 28, 2010

Talk, Talk…

Posted in Life's Little Moments tagged , , , , , , at 11:32 am by autismmommytherapist

So, I loved high school, AND I enjoy public speaking. I know, I’m finding myself just a wee bit insufferable too. Readers, please bear with me.

Early this week I made my annual trek back to Washington, DC, in part to reconnect with friends I’ve had for almost twenty years now, and in part to test out my blatant “self-promotion speech” on a group of Maryland teachers. I was fortunate in that my first boss from Virginia is now a principal of an elementary school across the state line, and she was kind enough to give me the opportunity to speak to her faculty about my blog and manuscript. I ended up with an audience of about thirty educators, which is amazing considering they weren’t required to attend, and also that it took place on a Monday afternoon at 4:00. Yes, there was food, and yes I brought the good chocolate, but still, it was an excellent turn-out, and I am deeply appreciative of their participation as well as to my former principal for having me there.

I haven’t really spoken to anyone older than the pre-school set in about seven years, so to say I was a bit nervous about the event would be a slight understatement. I wasn’t as anxious about the delivery or the content as I was about the likely prospect I’d start bawling in the middle of it, but fortunately my friend Jess at www.diaryofamom helped me out on that end. Prior to leaving Jersey she thankfully reminded me that no, it was not okay to deliver my speech while simultaneously conjuring up next week’s grocery list, that in fact it would be okay if I got a little bit emotional considering the content of my talk. I did in fact end up keeping it together, but I think that particular counsel helped me a great deal. In the end, my gravest concern during delivery was the onset of the worst attack of dry mouth ever in the history of speech-giving, an affliction which will most certainly require a beverage of some kind to accompany me at my next gig.

No, sadly, it will not be a nice glass of pinot grigio. I am speaking in schools, people.

While there weren’t any waterworks, I admit the butterflies however were in abundance before I approached the podium, and as I turned one ear to the lovely introduction my former boss gave me I tried to quell those little bastards with my own inner voice. I ranged from admonishing myself to “just do it”, which seemed a little trite, to picturing Clooney from his Out of Sight days (which was much too distracting), to finally summoning up the faces of my sweet boys.

This, it turns out, is about as bright an idea as conjuring up the deathbed scene in Terms of Endearment prior to giving a wedding toast. I quickly moved on.

No, when the preliminaries were concluded I just decided to get up there and go for it, and with camera rolling so I could critique myself later (I’m a glutton for punishment) I approached the podium, laid down my carefully organized speech, and was just about to begin when that little voice piped up one more time with yet another of its bossy demands. This time, it simply said this:  “Kim, just have fun”.

And despite my need to conquer the Sahara residing in my mouth, that’s exactly what I did. Much to my surprise, I can’t wait to do it again.

There were a few other commensurate highlights of my trip. My first night in town I got to indulge my Indian food fetish with one of my dearest friends in the world, and the lovely young man who served us thought it necessary to card me despite the fact I could easily have given birth to a twenty-year-old (trust me, the lighting was VERY dim). I spent another evening with former co-workers discussing Waiting for Superman, which sounds so good I might potentially leave my couch and darken the doors of a movie theater if it plays around here. Finally, after indulging yet another fetish of mine and devouring an entire bowl of shrimp pad tai, I had the opportunity to plead unsuccessfully with the young shopkeepers at Georgetown Cupcake not to throw away their wares at five minutes past closing (we were in the NATION’S CAPITOL after all, what closes at 9:00 PM?), and despite telling them I’d commuted from Jersey for this specific carb, found myself resoundingly ignored. Clearly, the blonde thing doesn’t work as well anymore.

All in all, it was a fantastic trip, and one I hope to make more frequently in the future, as I believe I’ll one day be able to return with Zachary without losing my sanity permanently.

I was granted one last gift upon leaving, as I rounded the beltway sandwiched between the patchwork quilt of fall foliage that signifies the best month of the year in the District. I thought back to my last four trips since I’d left the area, from the weekend celebrating the birth of my dear friend’s beautiful daughter, to the trip I’d made last year, twelve months after my youngest regressed into autism, a few months after he’d begun to make his journey back to us. I realized all of these trips upon departure had been tinged with sadness, as some part of me when leaving this town always feels as if I’m leaving my youth behind once again.

And while that regret remained my companion, another one appeared to take up residence in my child-worn SUV as well. My new friend was hope, a figure eager to appreciate both what I was leaving behind, and what I was approaching as my GPS helpfully navigated me north. The truth is, both of my sons are productive, and happy. Most days my husband is as well. When I manage to get enough sleep between those pre-menopausal hot flashes, I must admit I am too. I realized, this is the first trip I’ve made since we relocated from DC that I can honestly say my melancholy at leaving is in equal measure to my desire to return home.

And that, my friends, constitutes a good vacation.

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.

August 4, 2010

Can You Hear Me Now?

Posted in Life's Little Moments tagged , , , , at 6:29 am by autismmommytherapist

“No Justin, we have to share” I implore my oldest son, who has become captivated by a plastic stove whose coils light up on command, a kitchen appliance a young girl is currently playing with and loathe to relinquish. I quickly close the space between us and gently remove my son’s hand, and he acquiesces, turning his attention to a large truck which not only sports giant wheels to spin, but has the added bonus of expressing an exceptionally fun sound when he presses on the top of the cab. This is the first conflict we’ve had in our ten minute sojourn in the ear, nose and throat specialist’s waiting room, and since it’s packed, I’m grateful it has  gone this well. Hell, after our last visit to the shrink, I’m just grateful there IS a waiting room. Sadly, it doesn’t take much to make me happy these days.

In my haste to avert Armegeddon I’ve knocked my purse to the floor, and I quickly replace it to its appointed chair, then turn around to see what Justin’s up to now. I see he has situated himself on the floor near two other girls, truck in hand, blithely ignoring both of them. I notice that one of the children is repeatedly saying “hi” to him with a quizzical look on her face, and I quickly summon my best Olympic sprint over to where they’re sitting to explain to her that Justin’s not being rude, he just can’t talk. In my pre-child days I was fond of saying I could tolerate any kind of child as long as I didn’t raise a snob or a brat, and I feel I owe this clearly sweet girl an explanation. I won’t be party to her first male rejection.

I reach my destination, crouch down to the floor and say “hi, my name is Kim, this is Justin. He’s not ignoring you, he just has autism and can’t talk”. Inwardly I’m thinking, ‘sure, it’s JUST autism, no big deal honey’, but truly it would be inappropriate to burden this child with all the disorder’s fun manifestations. After all, she looks to be about six years old, and is enthralled with a semi-clad Barbie she’s waving around a bit dangerously. I remind myself she doesn’t require all the details, she just needs to know in this instance it really isn’t her, it’s him.

“Why can’t he talk?” she replies. Oh sweetheart, if I could answer that question, I could buy you every Barbie in town AND the dream house. Then you would never need Ken.

Instead, I respond  “Sometimes children with autism can’t talk. He has a computer that speaks for him.”

She looks at me skeptically to see if I’m putting her on, then asks, “do you always know what he wants?”, and I think to myself, well THAT’S a loaded question, but I maturely reply “yes, I usually do”. The miracle is, that’s actually the truth.

She lays Barbie carefully in her lap, looks at me again and says “he really uses a computer and he never has to talk?”  I assure her she understood me correctly. I can literally see the wheels turning in her brain as she contemplates this information. A few seconds later she turns her face up to me, smiles and says “If I had me one of those I wouldn’t have to talk all day either. That’s cool. He’s cool”, and she smiles and turns back to her companion. I remind myself I’m in a waiting room of parents, and I should resist the urge to hug her. I almost lose the battle.

The best part of this experience is I’m not surprised by her reaction, happy, but not surprised. This is the attitude most of my students had in regards to children with disabilities when I taught in Virginia, and her response was commensurate with most of the conversations I have here in Jersey with children who are curious about Justin and his silence. Acceptance of him has become the status quo. I silently thank the generations before me who worked so diligently to create this bridge of understanding, and the teachers and parents of my own who continue to foster it. It is a beautiful thing to behold. Today, not only did my son try a lollypop for the first time as he made his exit, he had the good fortune to be dubbed “cool” by a peer.

Don’t get me wrong. Things aren’t perfect for him, or for our family, by any means. But these little moments, these brief but profound connections, help immeasurably. And for once, as I leave a doctor’s office, I am satisfied.

July 21, 2010

Surprise

Posted in Life's Little Moments tagged , , , , at 6:31 am by autismmommytherapist

I taught for a dozen years prior to entering the domain of motherhood, five years in the District of Columbia Public Schools, and seven in the suburbs of Virginia, which in their own way were just as challenging as the years I worked in the nation’s capital. I was immersed in the lives of children at least 180 days a year, enmeshed in their triumphs, their tragedies both real and imagined, and their stories. I had thought in some respect this proximity to the under eighteen crowd would prepare me to be a better mom, one who would remain inured to the demands of parenthood, perhaps not seduced by the anxiety foisted upon us by the insecurities of my generation. In the end, I was more prepared for both the joys and the drudgery that define raising a family, but alas, I was not immune to the worrying.

The vast majority of my friends passed on their own genetic legacy at a “reasonable” age, producing offspring at thirty or a few short years afterwards. I can easily recall cradling their babies in my arms, listening to their murmured coos or cries of outrage at needs unmet, and I’d wait for my ovaries to rise up in anger at being synthetically suppressed for so long. They never united in protest, and eventually I would return my borrowed infant to its rightful owner without regret. Perhaps it was the whole concept of infancy, of which I’m not particularly fond, or perhaps it was that my brain knew this child was only a “loaner”, and would have to be relinquished eventually. Perhaps I just required that first insensitive ob/gyn to inform us that our chances of having a baby naturally were about as great as having two children on the autism spectrum.

We all know how that turned out.

I will never regret waiting to start my family. I don’t register pangs of envy at the sight of the dewy-skinned moms in Zachary’s pre-school class, and I feel no remorse in knowing that for them the eighties was a quaint era reminiscent of big hair and silly songs, not, in fact, THE BEST DECADE EVER. I needed those years of my twenties (and most of my thirties) to accomplish my goals, enjoy half a career, finish a few rounds of graduate school, and have childless, unfettered fun. I required time to mature enough to be able to put my needs aside to raise a disabled child without resentment or regret, at least on most days. I needed to learn how to feel more confident in my ability to mother my own offspring, to diminish some of the “surprise factor”. Those years, particularly that exposure to children, accomplished these goals for me.

While I did feel more prepared for what lay in store for me after giving birth, even after accepting the news that my child’s brain chemistry is forever altered, there was one surprise I did not, could not anticipate. I could never have known that the action of my oldest son pulling me down for repeated kisses of gratitude coupled with eye contact, or my youngest’s gleeful cry of “mommy” after a few hours of separation, could greatly eradicate my needs, my losses, my angst. I wish I could have known how fulfilling those moments could be, how they heal, temporarily ameliorate the sting of those wounds entirely. I wish I could have known how watching my sons smile and recognizing I played a part in the joy emanating from their countenances would be more fun (at times) than shopping, or a day at a really good spa. I wish someone would have told me, but perhaps that knowledge can’t be truly conveyed until it’s experienced.

Surprise…