September 6, 2011

The “I” of the Storm

Posted in If You Need a Good Cry, My Take on Autism tagged , , , , at 10:25 am by autismmommytherapist

Perhaps the hundredth or the thousandth hiccupping sob escapes from Justin’s lips, and I attempt once more to comfort him, but to no avail. We are stretched out together on my friend’s amply cushioned king-sized bed, me attempting to explain to my son that we can’t drive home in a hurricane, he imploring me with his eyes to try anyway. This is our second night in what I’ve come to call “captivity”, and despite having recreated his room as much as humanly possible with drawn shades, white noise, and his own sleeping bag and pillow, my eldest is having nothing to do with my choice of sleeping arrangements. I wipe away his tears once more and he pushes away my hand vehemently, and I take a hint, cover him up once more with his fishy throw, and quietly leave the room.

As I cross the threshold into the lighted hallway I recall how I’d wondered a few weeks ago if Justin’s aborted sleepover at Grandma’s was due to his routine being changed, or that fact that his mother wasn’t in residence with him. I shuffle slowly into the living room, dead on my feet from not having slept much the night before, fingers crossed. I no sooner reclaim my perch on the sofa when I see the blur of my son running past, with pillow and sleeping bag in tow. He clutches his treasures with one hand, and with the other shoves me toward his shoes, utterly indifferent to the pelting rain and strong winds buffeting the house from all sides. I gently redirect him back to the bedroom, and he sobs again in despair as we return once more to do battle. This time I don’t permit him to push me away and he finally relents, allowing me to rub his back and sing to him as his sleep medication finally takes hold, granting him release from his torment. I kiss him gently on the forehead and ease myself off the bed, and after slowly slipping the door back into its frame I once again return to the relative comfort of The Good Wife.

At least I have an answer to my question. He wasn’t missing his mommy at Grandma’s.

The decision to escape Irene with my children came with some trepidation, particularly as it seemed prudent to leave my husband here to hold down the fort, which meant I’d be traveling solo with the boys. Jeff and I went back and forth about what would be best. Finally, the inherent threat of flooding, coupled with the thought of a prolonged power loss, made me decide to flee. Justin doesn’t do “Amish” well, and the batteries in those DVD players would only last so long. Seeing as this situation could result in a bored autistic child being trapped without electricity for the better part of a week, we gratefully took family friends up on their offer to stay with them. We were very fortunate in that we had several offers to accommodate us. The one including the generator won.

The adventure started out well enough. The people we stayed with are family without the actual blood connection, and we’ve raised our kids to consider each other cousins, and the adults are viewed as aunts and uncles. Despite a large age difference all three of my friend’s children pitched in to keep Zach occupied, and he reveled in the attention he doesn’t get from his brother at home. Over the course of our stay my smallest son was able to attend his first Bar Mitzvah bash (Mazeltov!), sleep in a bed other than his own for the first time in his young life, and even find out what it’s like to have a roommate. He ran around that house and bonded with those boys perfectly, so much so that he would later declare he’d prefer to live there, and that my presence wasn’t required. Zach was enthralled with the concept of “big brothers” who played with him, and reveled in every minute of our stay.

And then, there was Justin.

I’ve gotten better over the years at somewhat disconnecting from his angst at times, because if I hadn’t, I might have drowned in it. I’ve learned to identify which reactions are an offshoot of autism for Justin, and which are simply the kvetching of a boy who’s bored and would prefer to do something else. The latter, and sometimes the former, are generally not tragic. I’ve figured out how to redirect him most of the time, to cajole him to stay at the beach more than seventeen minutes, or convince him he must indeed stay at my sister-in-law’s for Thanksgiving dinner. As he’s grown older it’s become easier to witness his unhappiness, particularly as with maturity (his, not mine), more options to rectify each situation have been unveiled.

But what I witnessed with my son this past weekend was no cousin to kvetching. It was pure, and unadulterated, suffering.

I should mention at this point that the home where we stayed could not be more welcoming to children. It was important to my friend to create a haven through which her kids could entertain, and they do this very well. Their house has been a sort of sanctuary for us, an “anything goes” locale, which is a treasure in a home where autism does not rule. If there was anywhere on earth Justin could have felt comfortable to reside other than my mother’s, this was it. And no matter what we tried, it simply wasn’t enough.

For the twenty-odd hours we were there that he was conscious (I counted) he cried, exhibited OCD-like behavior I hadn’t seen since his last serious illness, and he paced. His was a body in perpetual motion, unable to self-regulate, frantic for escape. I literally watched my son retreat into himself, with sporadic attempts at connection with those around him. He was completely and utterly bereft at having to relinquish his routine.

I couldn’t help but be struck by the dichotomy of the situation. One boy being cared for mostly by other children, out of my sight for hours (!), and perfectly safe. One boy who would literally have done anything for a room with carpet the color of sand, and stars shining from the ceiling. Often I find I’m immersed so much in our version of “normal”, that I forget just how different Justin’s childhood experience truly is from other kids.

This weekend, I was not-so-gently reminded.

Of course, it all worked out in the end, because truly, there was no other option. Justin woke once in the middle of the second night, but as I held my breath he heaved his body up, saw that his mother was next to him, and thankfully immediately slid back into slumber. We were able to make the trip home on Monday, a three-and-a-half hour journey that included my first ever solo pit stop with both of my children. Through sheer boredom and a desire to banish children’s tunes from my CD player I even began teaching Zachary French, and I now believe he is more fluent than I’ll ever be again. After inching through the streets of Princeton I learned that Zach would like to attend that institution (“it looks like a castle, Mom!”) and made a mental note to add calculus and Mandarin to his curriculum. It was a trying voyage but we made it home, and Justin’s joy was beautiful to behold.

Of course Zach immediately threw a semi-tantrum and demanded to return. Seeing as how my friends had once contemplated a fourth child, it was tempting.

We’ve all recovered by now, but I realize I have some planning to do. Through hard work and sheer tenacity (infused with a healthy dose of desperation) we’ve conquered Justin’s aversions to eating, sleeping, potty training, and refraining from expressing his displeasure with teeth marks. I’ve got my sights on Disney for next year, and of course that whole “he needs to live somewhere else someday” issue forever looms over my head. We’re going to have to teach my boy that no matter where he rests his head at night, at least for now, he’ll eventually return home again. It seems my next battle is at hand. Thankfully, with things going so well here, I think I’m actually up for trying another sleepover, someday.

As long as it’s not tonight.

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10 Comments »

  1. Misifusa said,

    Oh Kimi, what a heartbreaking story, but as always, you made me cry and laugh…and realize yet again, how truly blessed your children are to have you as a Mom.

  2. Jina said,

    What an adventure-Home Sweet Home! I salute you this morning with my mug of tea. And please pass this along to Zach, “Bonjour!”

  3. Mom said,

    The only solace here is that the second night he only woke up once and seeing you, did go back to sleep. It says volumes about his connection and trust in you dear daughter. Glad you were all safe. And for Zach, he can add ” to his life.

  4. Kathy said,

    Oh, that was heartbreaking to read, Kim. In the end it was a good experience for Justin, even if it wasn’t enjoyable. And you both survived! You deserve a night out with pretty drinks…

  5. Aunt Gerry said,

    Was concerned about all of you, so sorry it was hard for Justin and you sounds like Zach is really growing and enjoyed his stay. Kim you are a great mom and I enjoy reading your articles very much. This way I feel I have some contact with your family. Stay strong Love to al


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