January 25, 2012

What Next

Posted in My Take on Autism tagged , , , , at 9:22 am by autismmommytherapist

Muted light throws faint shadows on my son’s face as he watches the technician approach, a lovely, patient woman who has conducted this procedure many times before. She places what I’ve decided to dub the “EEG hat” on top of my child’s head with one movement, swift and sure, and just as quickly secures the straps under his chin that will hold it in place. Justin is startled into submission for a moment, then immediately reaches up to remove the offending accessory. I quickly push his hand down, look him in the eyes, and tell him “No Justin, you have to wear this for a while.”  He looks back at me, clearly annoyed, but slides back onto the couch anyway with a look of resignation on his face. He is soon immersed in the antics of Nemo on his small screen, and remains for a time relaxed, and compliant.

He hates this, but he’ll do it for me. This is just one of many reasons why I adore this kid.

We make it through the requisite twenty-one minutes of searching for seizure activity, and almost make it to the big goal of forty. The tech isn’t allowed to tell us anything, but I’ve become gifted at reading their faces over the years. She’s only glanced at her pulsating computer screen briefly during our half-hour together, and there’s been no trace of interest or concern on her face. Unless she’s an award-winning actress on the side I’m pretty certain we won’t be receiving a call in a few days about how to control Justin’s seizures. I’ll have to wait the requisite seventy-two hours to be sure, but I think it’s just one more thing we can scratch off our list as to why his behavior has changed so much since Thanksgiving.

One down, eight bazillion possibilities to go.

Justin will begin to protest in earnest at minute thirty-three, so we relieve him of his “headpiece”, cleaning soapy water from over one hundred tiny electrodes from his face and hair. Having had enough fun for one day he immediately rises to leave, and rejects the toys I’ve brought to bribe him to stay. We still have to get through an appointment with the partner of the neurological pediatrician we started with, and my son’s desire for departure at this juncture is not a good sign.

Fortunately my mom is here to help, and within minutes we are ushered into the doctor’s office, and asked to wait as he reviews Justin’s chart. My son is captivated by a scooter offering a multitude of buttons that generate light and sound, so I relax for twelve consecutive minutes (!), knowing my mom will take Justin back to the car to wait if need be. I dig through my purse for a working pen and the blank papers I shoved in there at the last minute for notes, and within a decent amount of time our doctor du jour enters the room.

Once the requisite medical exam is concluded and we are certain Justin’s reflexes are still excellent, my son grabs his coat, pushes my hand toward his bag, and heads for the door. I tell my mom I’ll see her when we’re done, and Justin beams his big “I’m getting my way” smile, and the two of them exit together. I settle back in my seat, and begin to answer questions about our family history that I can repeat in my sleep. I consider slipping something new in there just to keep things interesting, then recall that we’re paying a lot of money for this man’s time, and I need to be mature.

After eight years of these inquiries, this remains a difficult task for me.

Once we make it through the fact that nobody on either side of Justin’s family tree has anything spectacularly noteworthy, we settle into what I like to call the “closer” portion of the appointment. I know that in the concluding minutes of our chat, this learned physician will divulge all of the myriad random issues that could be contributing to the behaviors we’ve seen so exacerbated in our son over the last few months. Many will require rather painful, invasive tests. All are under a 5% chance that my child even has them, most a 1% at best.

None will have any real treatments to follow them up with whatsoever.

Over the years I’ve lost a great deal of my “star-struck” attitude where even the most celebrated practitioners are concerned, and I’ve learned to ask questions. Today I listen politely, take notes, write down statistics and long Latin names I’ll later be unable to reproduce for my spouse. When there’s a break in the litany I look him in the eye and ask a question I would not have broached the last time we subjected Justin to such a comprehensive exam, which was six years, and what seems like a lifetime, ago.

I ask him if there are really no treatments for these issues, why we should explore these avenues. I indicate that I’m heavily leaning against subjecting him to more intrusive procedures for which he’s at little risk, and even smaller potential gain. He seems only a bit surprised by my boldness, but then responds in a matter-of-fact manner that I can respect. “Some parents need to know the ‘why’ as much or more than the ‘what next’”.

And it strikes me that I’m no longer in the “hell-bent on why camp” anymore.

I should make it clear that I don’t believe this transition is part of a continuum. Should someone walk up to me someday, able to reveal the particular genes and/or environmental factors that created the autism in my boy, I certainly won’t turn away from that knowledge. I’d enjoy going to my grave knowing those particular genes’ names. It’s a goal.

But knowing the origins of the disorder in my two boys no longer consumes me. What I really want is a plan. Are there new medications out there now?  A new diet whose creation will torture me at meal-times, but which I would happily implement for Justin?  In other words, “what you got, Doc?”

We conclude our discussion soon thereafter and I gather my three bags and as many dozen toys to my chest, and begin my schlep to the car. I’ve tucked the paper with my chicken scratch scrawl deep into my purse, knowing I’ll discuss the possibilities with my husband that night, also knowing it’s unlikely that we’ll pursue any of them. I pay the equivalent of half a mortgage payment for my son’s EEG, feel gratitude that we can do so, and walk laboriously through the lobby with my stash. I reach the double doors, and use my elbow to push the glowing green button for egress. Other than the thought of impending lunch, there’s only one issue on my mind.

What next.

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4 Comments »

  1. Misifusa said,

    You are such a well of information to so many…I love that you now take the horse by the proverbial reins and decide what is going to be done, armed with the knowledge and experience that you now have. Good for you!
    Hugs to you, Justin and Mom..
    xoxo

  2. Nice to know you are not still enrolled at the “Hell-Bent on Why Camp”. I find that encouraging since I personally hope to leave this camp someday… because it doesn’t really matter, right? I’m trying to think that way, but my journey is pretty new, may take a while, luckily there is so much more to do and learn than focus on the why. My 6 year old son was diagnosed last October. So thank you for your blog, it really helps.

    Michele

  3. Kathy said,

    You are amazing!


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