July 26, 2010

Independence Day

Posted in AMT's Faves, If You Need a Good Cry, My Take on Autism tagged , , , , at 6:28 am by autismmommytherapist

It’s 7:35 AM on the day we celebrate our nation’s independence from the former tyranny of England, and I have dug my toes firmly into the sand, both literally and figuratively. We are here so early, my eldest child and I, that even on this particular day great swaths of shoreline stretch out before us unlittered by human detritus, devoid of the plenitude of children, toys, and towels that generally herald an impending holiday. Justin has been awake since 3:00 in the morning, with my husband taking first shift until 5, although I never was able to return to the sanctity of REM sleep after I heard the first utterances of vowel sounds snaking through our upper hallway. I took over shortly before dawn so Jeff could get some rest, and decided if we were both up this early Justin and I might as well go to the beach before it became so crowded we could barely move. I have firmly entrenched my lower appendages into the swirling mica before me because I am determined to remain here for an entire hour, despite my son’s penchant for leaving every destination within thirty minutes. I’m exhausted, we’ve made the effort to come here, and I found free rock star parking. Short of a super tantrum, we’re staying a while.

For the moment Justin is enthralled with a faux laptop I dug out of the bottom of the infamous closet, its remembered familiarity exciting enough to captivate him for a time. I have a book in front of me resting on my lap as I contemplate the alien landscape before me, peppered lightly with entire families clearly here to make a day of it, loaded with coolers, beach toys, and tents for little ones to nap. I am reminded by days in the not-too-distant past when our family of three made our annual Jersey shore tour from Washington, how we would spend hours in the morning watching Justin negotiate the waves, then bring him home to rest, and repeat in late afternoon’s more benevolent light. We often had to drag him home then, protesting vociferously at the indignity of being separated from sand and sea. Normally, I could summon up a smile at these warm remembrances, but today I am tired, and I am bitter. I’ve never really been a “look at the bright side” kind of girl, have rather chosen to catalogue, acknowledge, and shelve the unbearable, then reframe the picture. Today, I simply cannot do this. Instead, I immerse myself in misery.

I am aware that Justin’s fascination with his toy may be short-lived, and my respite from parenting as well, so I angle my mind to the upcoming day, weave through the possibilities, none of them enticing. We are supposed to go to my sister-in-law’s for my niece’s birthday party, but the thought of taking a moderately autistic child with grave impulsivity issues to a pool party on five hours sleep is not a pleasant prospect. This is my husband’s family, and as such I will demur to him, and let him keep countenance of Zachary. I will watch over his brother, which will inevitably lead to both of us ensconced in solitary confinement somewhere within the adjacent house, with periodic visits from well-meaning relatives bearing drinks and food for me as I attempt to keep my oldest from destroying my sister-in-law’s lovely home. The other option, of course, is to remain in New Jersey with him, which will result in a half hour swim in our backyard, and hours relegated to our own four walls, alone. After so little sleep, either option is untenable.

Justin giggles next to me at some long-forgotten sound emitted by his plastic babysitter, and I briefly permit my eyes to close as I rest my hand lightly on his arm. My mind wanders to Fourth of Julys past, long, sun-scorched days on the beach, watermelon, ripe and succulent on my tongue, the staccato of fireworks iridescent in their splendor over the calm surface of the Navesink River. I recall the fun of it, the unappreciated freedom, the inherent spontaneity of certain events. In my current life, there remains very little of that now.

And as I embrace my bitterness, allow myself this self-indulgent sadness, I think about how if I wrote this life into a television drama, I wouldn’t watch it for its unbelievability factor. We have just concluded a six week stretch of rotating illnesses, first the children, then the parents simultaneously which was most disastrous, then Justin again. We are cycling through another period of my eldest son’s ramped up OCD, which while not nearly as exhausting as the pinching days, still whittles away at our sanity with slow, deliberate cuts. I cannot bear to explain to an old friend why I cannot carve out an hour to see her this week, why I cannot pick up the phone when I’m solo with both my children, why every moment, every aspect of my life must be planned with the precision of a rocket launch. I simply do not have the energy anymore to convey the complexities of this bizarre existence. Finally, it seems I no longer care to try to define for others this often ridiculous, impossible life.

And I wonder, as children cavort carefree around us, and my son reaches for my next battery-operated savior, if for Justin and me, there will ever truly be an independence day.

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10 Comments »

  1. LZ said,

    I recognize and identify with so many aspects of your writings my friend. Those moments of sadness and isolation, and the energy it takes to let other people into the world that we so desperately fight to protect…it is familiar ground. As solitary as it may often seem, you are not alone, and you are well appreciated and understood, even (in my case) if only from a distance.

    I hope you got your hour on the beach.

  2. Chad said,

    You always will have the energy as brick walls are inevitable. Look at it this way–at least you’re at the beach. You could be in the midwest! :O)

  3. misifusa said,

    Oh Kimi, this one made me cry. I’ll continue to hold out the hope for you.xo

  4. Kathy M said,

    Oh, Kim, another one that made me cry. I can’t wait for the day when you can put your feet in the sand and truly relax, knowing that your son is okay.

  5. Sally said,

    I’m so sorry. It must be tough not to be able to relax and just enjoy the beach. I felt somewhat the way you do when my children were very small. I need eight hours of sleep every night to function halfway decently and with teething babies, ear infections, toddlers trying to run into the street or climb the china cabinet I felt like my life would eternally be one of constant vigilance and stress. I missed my old childless friends and I missed doing what I wanted to do when I wanted to do it.
    I used to teach autistic teenage boys before I went to law school and changed careers. I should have been eternally grateful that my children didn’t have autism, that they were “normal” and were able to tell me what was on their minds and have friends and do all the things that kids usually do. I’m ashamed to say that I wasn’t as thankful as I should have been. I got my life back as my children grew older. My youngest is sixteen now and she’s a very responsible young lady and a great companion. The eldest two boys are in college and doing very well in their first forays into the world. The time when I felt virtually chained to the whims of three demanding little people is over and I survived. Now when I see my neighbor struggle with her autistic son and when I read blogs like yours I remember those days of feeling trapped and hopeless and I feel bottomless gratitude that my children are able to be independent and navigate the world on their own. I hope you’re able to get some time to yourself when you can just kick back and enjoy the beach without having to worry about keeping your son entertained and avoiding tantrums. I experienced a little of that when I was teaching but unlike you, I could leave at the end of the day. I admire your honesty. Those blogs by women who insist that they wouldn’t change a thing about their autistic children and they’re glad their kids are the way they are don’t ring true to me.

    • Thanks Sally! It is certainly a spectrum of perspectives, isn’t it? I loved that you get the difference between teaching and parenting- with the first, you get to leave at the end of the day! I taught too, and I always knew no matter how difficult a particular child was in class, at 3:00 it was over, ten months tops. This is for life, and in the case of parents with profoundly disabled children, it’s truly for life. Thanks for reading and for posting, I appreciate it!


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