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.

November 5, 2010

Fear of Flying

Posted in My Take on Autism tagged , , at 6:11 am by autismmommytherapist

“GET IT OUT!!  GET THE FLY OUT!!!  GET IT OUT OF THE CAR!!”  I could hear his screams from the barn, know even though he is intensely close to his father that my youngest needs my embrace to feel safe, requires his mommy’s hug to save him from his demons. I won’t be able to protect him this time however, as Justin’s horse back riding lesson has just concluded, and I need to pay, get my eldest child on the potty one more time, and usher him out of there. I rush things a bit, and Justin graces me with an annoyed look as if to say “where’s the fire?”, but I continue to hurry him along anyway.

We finally conclude our chores, but in the last few minutes Zachary’s pleading cries have ramped up considerably. I imagine my husband has released him from the bondage of his car seat, and is trying unsuccessfully to calm him down. Justin and I finally make it to the car, and before me I see my three-year-old, trembling, completely in the throes of a total meltdown. Tears are running down his face, snot snaking into his mouth, and his entire body is wrapped so tightly around my husband’s large frame I’m not certain how Jeff is still breathing. Zach sees me and launches into my arms as I drop our bags into the dust, and I urge Jeff to make sure Justin doesn’t run into the middle of the parking lot. He is shaking, my son. He is terrified. Five minutes into what I’d hoped would be the sanctuary of my arms, he is still inconsolable.

I know, with utter certainty, we have entered a new era with Zachary’s breed of autism.

Two years ago this month, my husband and I watched in horror as our youngest son’s words, personality, and the essential essence of who he was vanished before our eyes, simply disappeared following two back-to-back illnesses over the course of a few weeks. We were terrified, uncertain whether or not he’d lose all capacity for speech, whether he’d ever resume saying “mama” or “dada” again. More importantly, we feared the permanent absence of his spirit, the light in his eyes that let us know he loved us, and allowed him to know he was loved in return. For months he was completely devoid of personality save for a few remnants of his former self, the last vestiges of what made him Zach. We didn’t know if he would get better. We didn’t know if he would get worse.

All we knew for sure was we would have to wait.

Wait we did, and in the end, we were rewarded for our time, although I cannot say we were patient. Over the course of the next year we watched him regain his vocabulary and expand it, transition from one word commands to two-word phrases, and eventually regain the absolute luxury of full sentences. We rejoiced as he remastered lost skills, pointing to desired objects, summoning us with words not with cries, clapping in delight at a game or mere eye contact with a loved-one. He was altered, yes. He struggled at times with basic concepts. His easy-going personality was replaced by a far more cantankerous one, which his father and I had to accept. He was, a good part of the time, challenging.

But he was back.

And I’ve known, in the year since we regained the core self of our son that the battle may have been won, but the war wasn’t over. I knew the myriad symptoms of autism could still display themselves in our child, that rejoicing in his happiness, that letting down the gauntlet of worry, was premature. I took pleasure in the return of his joy, but somewhere in my soul I hunkered down for what was to come, what I knew inevitably would arrive.

It’s here. My son is riddled with anxiety, held captive by fear. And I’m afraid our presence, our tenacious adherence to routine, our collective love, will not be enough.

The past few months I’ve watched him develop an almost pathological fear of flies, bees, and insects of any kind. For most of September he was too afraid to exit our house and attempt a trip to a playground, much less blow bubbles in our backyard. He has shown his newfound fear of the dark, certain foods, and his brother, the latter who while not really interactive with him consistently, at the very least rarely bothers him. Despite the purchase of Thomas and Lightening McQueen potty seats the toilet terrifies him, and I fear a long and extended battle with potty training will ensue. For a good part of each day now, he’s just scared.

Frankly, it breaks my heart.

And I admit that I’m scared too. I’m worried that our son, who’s returned from an abyss of sadness, will be crippled by this fear. I’m concerned that all the progress he’s made will be overshadowed by being afraid, that this emotion will be his constant companion in life, will prevent him from sampling some of the pleasures his parents have been so fortunate enough to enjoy. I am afraid for him because I’ve seen it happen in children I know, heard the stories of how it limits their lives, and at least for one of my children, I wish unlimited frontier. I want him to have choices. I want him to walk through his day confident, receptive to the surprises with which life will ultimately gift him. I just want him to be happy.

And I wish, for the millionth, trillionth time, that somebody would please just tell me how this all ends.