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.


  1. Meg said,

    Kim, you have such a gift for putting into vivid words the joys and fears that are part and parcel of parenting. I’ve no doubt these emotions are amplified when you’re raising children with special needs.

    Your kids are lucky to have such a thoughtful, articulate mom!

  2. misifusa said,

    Oh honey…my heart goes out to you. As always I am here for you. xo

  3. LZ said,

    Oh Kim. My heart goes out to you and your family. I do not have the words for this one…

    • Thanks hon, it’s gotten a bit better since I wrote this. Santa seems to be a comforting idea…

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