November 25, 2013

“EEG-land”

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 10:23 am by autismmommytherapist

Disney and Halloween 2013 184

His hands reach up forcefully to free his scalp from its gauzy restraints, and for the hundredth time I say “No Justin, it has to stay.” Although my son responds with obvious distress and a few more furtive attempts at freedom, he complies. My mom and I run around trying desperately to distract him, and achieve mecca when the hospital’s child life specialist brings a cache of “light up and spin” toys, his favorites from home being so yesterday. We are in our fourth hour of “EEG captivity,” and the adults in the room are all wondering how we’ll get him to bedtime, much less through the night where most of the important information will occur.

Finally our dinner arrives, and as if by magic my happy boy returns, his desire to pull off his cumbersome headgear quelled. I look at my mom and smile in relief, as since we’ve made the supreme effort to get here by God I want to compile this data. Eventually Justin turns off the television himself and hands me his favorite book, and with astonishment we realize the child who has only spent two nights outside of his own room in the last seven years is actually ready for bed. We quickly comply with his demands, darkening the room as he likes, turning on his sound sleep for white noise and comfort.

I curl up next to him on the bed and rub his back as I sing his night songs, see his breathing even out, watch him as he slips into slumber. My mom and I quickly clean up and organize the space for my husband’s impending shift, and we quietly high-five each other, as not only is Justin unconscious which is imperative for the study, but we’ve managed to capture the episodes that indicate potential seizure activity.

Since epilepsy is often co-morbid with autism his neuro pediatrician thought we should do the test, and although we don’t like to subject Justin to unnecessary procedures, this one seemed important. My shoe catches on his errant sneaker and I almost take a tumble in the dark, and I contort my body to avoid making noise because I will do anything legal to keep this boy asleep.

I sit to avoid further calamity, and wish once again the hospital served wine.

As we wait for my husband to arrive I have a few minutes to reflect on our experience, which despite great difficulty has been a positive one. My son, who generally wants to leave even the most fabulous places in under an hour and loves his bedtime routine perhaps as much as his parents, has made it through the better part of a day with tiny electrodes placed all over his head, held in place by a gauzy substance that is certainly irritating the hell out of him. He has born these indignities with some protest, but each and every time I’ve told him “No,” both in response to removing the offending head gear or his plea to leave as he shoves his shoes in my hands, he has complied with my refusals.

As I sit back in the hospital’s surprisingly comfy recliner I reflect upon how momentous today has been, how I could not have entertained even attempting this procedure even a year ago, how much Justin has matured, and with such grace. I think upon the different trajectory of my sons’ lives, how my youngest with mild autism will most likely follow a more traditional path, perhaps involving a spouse and children, most certainly a stint at college and career.

I muse that I will be proud of his collective accomplishments, the trappings of a “normal life” that will probably be his due. I gaze upon the slowly rising blanket of my slumbering son and feel to the depths of my soul that I am equally proud of this child as well, my son who tolerated the hands of strangers today, the confines of a hospital room, the indignities of electrodes monitoring the mysteries of his brain.

I contemplate the fact that every time I denied him his protest was coupled with a deep gaze into my eyes, a slumping of shoulders that admitted defeat, but an absence of aggression. I ponder how much self-control this action necessitated, how he contained his wrath, how he constantly shatters my expectations of him.

I walk over to adjust an errant swatch of his favorite blanket, feel his moist breath on my fingers, gently lean over to kiss the cloth so as not to disturb him. Tomorrow he will most likely return to his beloved home, this child who despite his severe autism has days dominated by affection, who at ten years of age is attempting to speak to get his needs met.

His accomplishments differ greatly from his sibling’s, but they are equal in stature, merit commensurate praise. I watch as he shifts slightly, perhaps chasing dreams of home, and my heart swells with pride, with love, with gratitude that he has helped us conquer yet one more hurdle in his often challenging life.

Soon my spouse will enter, and the changing of the guard will occur. But for these few moments I simply hold my mother’s hand, revel in the beauty of the boy before us, and let my unfettered pride reign.

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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.

January 9, 2012

Reprieve

Posted in My Take on Autism tagged , , , , , , , , , , , , , at 10:32 am by autismmommytherapist

SLAM!!!  I turn in time to see my eldest boy conclude what I know was the long arc of his hand originating behind his head, and ending with contact on what I fervently hope is not a now-broken DVD player. I rush to the living room to tell him not to slam things, which usually is enough to break him from his reverie and redirect him. This time however he just looks at me, with a remoteness in his eyes and an expression I can only describe as “devoid of Justin”. He attempts to do it again. I grab his arm and pull him to me for a hug, and I literally feel the tenseness in his body dissipate, and the essence of my boy return. He graces me with one of his heart-stopping smiles and returns to the DVD player, the episode seemingly forgotten. I return to my dishes in the kitchen, but I know it won’t be long before I hear that ill-begotten slap, and will abandon my scrubbing once again.

I just want this to stop.

Justin’s autism symptoms (or perhaps more accurately, his OCD symptoms), seem to ramp up considerably after either an antibiotic, or an illness, or both. He battled a fairly mild ear infection just a month ago, one which eventually required his usual dose of amoxicillin, and left him healed. It also left him with what I refer to as “extras”, including an increased need for order in his life, frequent head-shaking, and a new manifestation, the slam-dunk of a hand on any object in close proximity to my boy. These behaviors usually come and go in cycles, fortunately  with many long and peaceful interludes in-between. This time unfortunately his returning health has also brought back the long-forgotten urge to pinch, as well as awkward body movements, and I know it’s time once again to explore why this is occurring.

And trust me, we’ve been here many times before.

Jeff and I decided to take him to the ATN at Philadelphia CHOP (Autism Treatment Network though Autism Speaks), in part because he hadn’t had a full evaluation done in a few years, and in part because I felt they’d be the best practitioners to help us decide which specialist to approach next. For anyone considering using any of the ATNs in their area I’ll share that I thought it was a very comprehensive evaluation, with the best part by far being our experience with the developmental pediatrician.

Any time a clinician associated with autism examines my son, offers me excellent advice, and exudes any amount of warmth whatsoever, I am hooked.

After my husband took my exhausted son out to the car so I could conduct the rest of our family history in peace (after seven years dealing with autism, it’s become rather lengthy), I felt like I could really concentrate on what she was saying. She told me straight out after observing him that his new movements could be indicative of a seizure disorder, and although the chances were rare, we’d need to investigate further. We discussed the fact that he might just be reacting to the Risperdal, the medication we put him on a year-and-a-half ago to help eradicate the last of his aggressive behaviors. Dr. B also said that all of these aberrant incidences, the return of the pinching, the head-swinging, and the unpredictable slams, could simply be a new manifestation of his autism.

We’ve been there before too.

Our knowledgeable developmental pediatrician informed me that a pediatric neurologist would be our next stop, and visits would probably include at the very least an MRI and an EEG, none of which have been conducted on my boy before. She must have seen me grimace because she offered me a heartfelt “I know, both are going to be extremely difficult for him”, an offering of empathy that made me want to hug her.

I restrained myself.

I also took away from our conversation that I needed a very specific type of neuro ped, one well-versed in seizure disorders, movement disorders, and tics. Dr. B gave me a list of names (all of whom would decline taking Justin on, but at least I left the office with a plan). Through my husband’s supernatural research skills (literally, the man can find ANYTHING) we’ve since come up with a practitioner who seems to fit the bill, one who even had a cancellation for ten days after our initial call.

I’m sure many of you will agree that’s better than hitting the lottery.

Within a week’s time we’ll be gracing the doors of this new practice, and unless it’s an absolutely horrible experience, I’m sure we’ll return for any number of fun tests and consults too. They will be difficult to watch. They will be much tougher, for a myriad of reasons, for Justin to endure. But endure he will, because he is such a good boy, and we’ll get through all of it and hopefully come away with some answers.

I recall, as I closed up my purse and gathered a half-dozen toys scattered around the tiny CHOP exam room to make my return to our car, that the feeling accompanying my relief for having a plan was rage. Rage that perhaps something invisible to the naked eye incites these symptoms in my son. Rage that at times he’ll stop in the middle of an episode, his face will crumple, and he’ll sob his heart out for no reason. Rage that he and our family have come so far, and still have to endure these periodic regressions.

Rage that my boy still suffers.

And yet, infused with the rage remains that thin filament of hope, the thread that has been with me since the beginning, and stubbornly refuses to be broken. The research has come so far in the past few years, physicians are so much better informed, that perhaps for Justin, we will discover some relief.

And along with a lot of baggage, I unwind that thread with me as I head back to my car, and him.