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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May 29, 2013

Mirror Image

Posted in AMT's Faves, Life's Little Moments, My Take on Autism tagged , , , , , at 12:19 pm by autismmommytherapist

Justin Turns Ten 020

My son lies quietly on his gurney, enmeshed in a cocoon of warmed blankets I’ve tucked around his feet. He’s been here for well over an hour, as the child slated for the MRI before his keeps waking up mid-test, so Justin has been forced to wait. Every five minutes or so he tries to swing his feet off the side to get down, and his father and I say a calm “no”, and he complies.

Finally the nurses come in to sedate him, and he relaxes into our embrace as the staff does their job. Within a minute he is out, and the kind nursing staff at CHOP whisks him off to the exam room as his father and I give each other a thumb’s up.

Waiting not being Justin’s forte, we are actually relieved they’ve taken him.

We’re here at CHOP today to conduct the first in a series of tests for our son, a series which will include very advanced blood work, and perhaps even a spinal tap. Justin’s father and I have traditionally been very conservative when it comes to tests and treatments for Justin, as historically they’ve never lead to much improvement in his symptoms, and I hate to put him through anything unnecessarily.

Our neuroped has never pushed us into anything which is part of the reason we’re even consenting to these ordeals, has in fact been patient as we’ve contemplated their possible efficacy for the better part of the year. When they were first proposed Justin was going through a terrible period of aggression, and frankly all we could concentrate on at that time was finding the right dosage for his medication, anything to alleviate the pinching, pushing and general miserable nature so unlike my firstborn.

My family is in a much better place now, and I am far more able to process the reasons for the tests, and the knowledge their administration might reveal to us. Among many other things, these exams will be looking at mitochondrial dysfunction, possible inflammation, viruses, and neurotransmitter function.

There is a very small chance they will discover something “wrong”. There is an even smaller chance we’ll be able to treat the issue. His father and I are at a point where we’re willing to put him through these exams to find out.

Despite the somewhat invasive nature of these trials (as well as the fact he’s missing a sacred day at school) I’m game, because I hope we can help him. His perseverative tendencies, the OCD-like behaviors in which he often engages but which rarely seem to bother him, have become a torment over the past few months.

The repetition of movement which in the past has actually seemed to calm him has now become his enemy, seemingly robbing him of his generally happy nature. Sometimes, when he can’t bring something to his idea of “order”, he just ceases, and cries.

It’s heartbreaking.

I want it to stop.

My husband and I now have the luxury of a forty-five minute lunch together, so we gather our valuables and make our way downstairs to the hospital’s convenience store. I know that very soon we will make our way back to his room, where he will eventually wake up a little wild, but will self-soothe when he knows his parents are by his side.

I have a feeling he will come through with flying colors, will recover quickly from the effects of anesthesia as he did after his ear tubes were placed, that we will soon be on our way home. He will be calm, at peace.

He will be our good boy.

And for just this moment I allow the anger to wash over me, that we are here in a hospital on this beautiful spring day, that as I’m writing this my son is in repose in a loud cocoon, not at school with his peers. I’m angry for the disruption that autism often causes in his life, and in ours. I’m angry that he sometimes suffers.

I’m angry I can’t make it better.

My husband and I wait mere minutes before he’s wheeled in, still knocked out from the anesthetics, his face beatific in repose. He will sleep another hour at least as his father and I hover at his bedside, and I grab my husband’s hand and squeeze as we give each other our trademark gaze/half-grin.

It’s been ten years since this journey’s started, and some days it feels like a hundred. In truth, even though unfortunately we’re both really tired, we’ve only just begun. We have to harness our reserves to weather what will come- adolescence, adulthood, our eventual demise. There’s so much still left to go.

But in this moment there’s simply the three of us, just as we started on that chilly May morning over a decade past, when the sleeping child before us made us parents. We will do whatever we can for him, in part because he’s ours.

We will also do whatever we can because in truth, he’s just so damn wonderful.

I avert my eyes to my slightly stirring son and place my hand lightly on his chest, feel his strong heart beat in time with my breathing, see his body shift imperceptibly as he struggles to come back to us. He’s a fighter this one, always has been, always will be.

He will return to us soon, craving hugs, juice and snacks, as is his habit. We will slowly dress him, and he will love being escorted out in his fancy wheelchair. He will smile when he realizes he is going home.

And I will smile in response, and remember as I often do just how much I love this special, unique, and amazing child.

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.

September 22, 2011

It’s All in Your Head

Posted in Life's Little Moments tagged , , , at 8:58 am by autismmommytherapist

I slide serenely into the MRI “tomb”, white walls embracing me with their sterile closeness and clicking sounds, and I lie still so I won’t have to repeat this test again. It’s my second one in two days, prescribed by the neurologist I’d been to see who assured me the incidences of dizziness and blurred vision I’ve been prone to recently were not all in my little blond head. The good doctor thinks the images resulting from these exams will reveal pinched nerves in either my cervical or lumbar spine, most likely a result of picking up my eight-year-old too frequently, an activity which now needs to cease. I had never realized pinched nerves could have such an effect upon a person. I suspect he’s right, and that Justin will have to become even more independent when disembarking from rides and horses. I am also open to the possibility the good doctor may be totally off-base, and that these dizzy spells I’m experiencing may be a result of years of unyielding, unimaginable stress catching up to me.

The irony, of course, is that things have never been better.

I refer often to my theory that all things are cumulative, that while I attempt to fully deal with and process trying situations as they come, I may not be as good at it as I think. Truly, I make an effort to take care of myself. At meals, there is at least the occasional consumption of a fruit or vegetable. Attempts are made to get seven to eight hours of sleep, when my children and my own body permit me to do so. I’ve incorporated a fairly regular exercise schedule into my daily life, in part because it helps me reach those sleep goals, and in part because much of my writing fodder is gleaned from that pounding of pavement. I schedule outings with my husband and girlfriends because those events make me happy, which renders me a better mother. I also do this because although the boys do take up just a bit of my time, I recognize the importance of carving out some for myself as well.

Unless Shirley Maclaine is right, this is the only life I’ll get. Momma needs some fun occasionally too.

In short, I’ve really tried to live as full and balanced an existence as possible, despite the sporadic tempestuousness of this household. I’ve attempted to model as often as I can what I thought my life would encompass- the rigors and joys of motherhood, work, marriage, and friendships. After years and years of sleepless nights, refusals to eat, pinching of flesh, loss of language, and religious adherence to ritual, my family has finally tempered a truce with my sons’ autisms. The thought that I may not be able to fully enjoy this peace because the last few years are catching up to me, frankly finds me enraged. My fingers are crossed that my eminent neurologist is correct, and that the nerves in my spine have rebelled against their overuse, because there are methods to alleviate those aggravated nerves. And truly, I need to figure this all out, because the prospect of blacking out while with my non-verbal moderately autistic child in public, is not very pretty.

The alternative, that these episodes are simply stress-related, is just not acceptable, although it may be reality. Truly, short of entering an ashram and engaging in meditation all day, I don’t envision much of a serious respite from my life for the next ten, to perhaps thirty, years. I am honestly doing the best that I can, and I’m not really sure my clinician’s suggestion of a warm nightly bath will do the trick, although with just a bit of lavender included, it does sound lovely.

Here’s to hoping the hovering hum of this MRI machine proves it’s not all in my head.

Author’s  Note:  Thankfully, pinched nerves it was. That pretty x-ray my neurologist displayed for me was a reminder of both how “physical” this life can be with our kids, and how important it is to take care of ourselves regardless of what is transpiring in our lives. I hope this post reminds everyone to do just that!