February 6, 2018

Back to Normal

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , at 11:13 am by autismmommytherapist

He gently snores in recovery as I adjust the blankets around his bare shoulder, the rough cotton gown that afforded him some modicum of privacy having slipped down his chest. I carefully watch the plastic apparatus in his mouth that keeps his tongue from blocking his airway as he breathes, see him slowly working his way out of slumber. We may be here for minutes, we may be here for an hour, as we see how long it takes for Justin to slough off sleep after his sedated MRI. My husband is busy with paperwork and discharge instructions so I use the time to sit, watch my boy, and assess our day and how it all went.

All in all, a banner day for my severely autistic boy.

This is not to say we didn’t have our rocky moments. My son is religious about keeping hydrated, and of course only a few sips of water are allowed the morning of the procedure, which was challenging. I was thrilled to find out last week that the hospital didn’t have any water fountains, as these are Justin’s “hydration stations” everywhere we go (we actually build in extra time on excursions just to accommodate his liquid cravings). Even though he was verbally requesting “juice” and “water” every thirty seconds I thought we’d won when my son took off down to the other end of the waiting area, having discovered a door cracked open maybe six inches wide to a room sporting a sink and cups for staff. A super fun ten minutes ensued where I had to body block the kid who weighs what I do now as Jeff continued to register, but eventually he relented after much protest and let the kind nurse lead us away to our second holding station.

This one did not have a sink. It’s sad what makes me elated these days.

We had another moment of semi-panic when they told us his procedure was scheduled for ninety minutes later than they’d rescheduled us for three days before (there was no way we’d keep that kid from water for five consecutive hours), but the staff straightened it out for us. Justin compliantly stretched out on his gurney, and they even let me lie next to him as they escorted us down the labryrinth of hallways that led from the children’s hospital to the main hospital where they do sedated MRIs.

Justin thought it was funny that Mommy got to lay down with him. I found it so relaxing I decided I wanted one for Valentines Day.

He was a champ through the whole thing. The staff let me sit next to him as they administered the mask with the gas, which he didn’t like very much but tolerated. We sang him songs to help him slide into sleep, and within minutes he was out as they carefully lowered him onto the table that would send my boy into the tunnel to check for any abnormalities in his brain structure.

I admit, I found myself tearing up at his courage as I left.

So for now I sit, and watch his chest gently rise and fall, see him in a static state which he only shows us at home when he’s unconscious. I think about why we’re here, how this test probably won’t give us any answers but will just rule out the scary stuff that my mommy gut says he most likely does not have. I think about these “staring spells” he’s been having since October that have dissipated slightly in number and intensity, episodes that rob him of his joy in the world and make his mother more worried than she usually is. I think about how much I want answers, but how I want treatment more. I think about how I can’t help but project how these episodes have such far-reaching repercussions- if we don’t eradicate them will they keep him from attending camps, participating in a day program after he turns twenty-one, prevent him from living in the group home he will certainly reside in when my husband and I are gone.

Yes, I’m a planner.

I let these thoughts course through me, gently discard them from my present state as I’ve learned to do to keep my sanity. Instead, I focus on this- that we have wonderful doctors working to help him in multiple disciplines. That we have seen slight improvement in the past several weeks. That this might not be seizures, or autism-related catatonia- it might just be extreme OCD, which is not in itself life-threatening, although it can be way-of-life threatening. I remind myself that every single challenge Justin’s multiple diagnoses have put before us we’ve met head on, and if not conquered, have ameliorated so that he has a good life.

Yes, I’m proud to say my severely autistic son has a really damn good life.

My mind wanders to the other reason I want answers, which is that when Justin is enmeshed in these episodes, nobody can witness his true, loving self. I am not unaware as to how my son presents to the typical world. When we are out and about there is a serious quality to him, no smiles, no eye contact, just a burning need to get to his destination or leave a place or acquire a carb (that last one I can truly relate to). We’ve taken him to his brother’s cub scout events, to karate, on errands, and fun destinations where routine must be followed and little joy is shown, although I know in my soul he enjoys the fun places. With one eye watching him and the other trained on those around me I know how he appears- devoid of emotion and utterly fixated on his goal. There is a hardness to him, a purpose that must not be denied.

He does not appear connected to those around him at all.

But with those he loves, he is, oh how he is. There are countless kisses for me and his father throughout the day, “forehead kisses” for his grandmas, smiles for the staff at school. We need to build in time to hug every morning before school and every night before he sleeps. Every single day there is a gesture of love for no reason, accompanied by a smile and that intense eye contact he’s always bestowed upon me.

And the thing is, these “spells” are robbing him of these moments, and I want it to stop. I want it all back, the connectedness, the kisses, the gift of gaze we feel so lucky to be witness to.

I want him back.

He stirs, and one of the many compassionate nurses who have helped us today comes quickly to see how he’s doing, telling me it may be a while longer as he fights to come to consciousness. She asks me questions about him and his life, and I regale her with how well he does at school, his passion for horses, his affectionate nature. She nods and I know she believes it all, and somehow it is a comfort to me.

I always want the world to know his generous soul.

Soon we will be discharged and will make our way home. There will be laundry to fold, a cub scout den meeting to attend, lunches to make. Based on other minor operations Justin’s had I anticipate he will be back to himself in a few hours, and life will go on.

And my silent prayer to the universe asks that this boy returns to his normal soon.

 

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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.