Wednesday, March 14, 2012

[Rock &] Roll With It

And He arose, and rebuked the wind, and said unto the sea,
Peace, be still.
And the wind ceased, and there was a great calm.
Mark 4:39

Reading time has ended, but my nightly routine has just begun. Before I can put down my e-reader and prepare to pray with the boys, Wyatt has some instructions for me:
"Mommy, I need my lullaby, and I need it to rock tonight! I need to do percussion ... maybe some cymbals. Without rocking out, I don't have romance!"

Romance? What in the world does rocking out have to do with romance?

Baffled, I snag an idea from "Mr. Micah: [his uber-clever therapist] and reply, "Hey Wyatt, I forgot-- can you remind me what romance means?"

"You know ... it means that you're calm and you can go to sleep," he explains.

Then the metaphorical light bulb turned on and mama finally understands-- he meant RELAX!

"Sweetie, are you sure you don't mean you want to relax?" I cautiously offered.

"Yes, I do want to do that! I sayed [said] the wrong word! Good problem solving, mama. Now, about my song ..."

I assure him that we'll figure something out after prayer time, and he snuggles in with his beloved Sponge Bob comforter from Grandma Mary, ready to talk to God as only my son does. Some nights he tells Jesus about video games, other nights he thinks long and hard about sins and sincerely repents of them or (as was the case tonight) he thanks God for having the silliest daddy in the whole world who is "a very funny miracle." I just never know, so I do what I've tried to do for the past seven years when it comes to my precious boy-- I roll with it.

Once prayers were finished, Wyatt was intent on planning his lullaby once more: "It needs to rock, mom. No 'Close Your Eyes' (a James Taylor classic) tonight; it's time to rock!!!"

My mind raced through my mental Rolodex of bedtime songs and came up empty. We do folk songs, old hymns, classic lullabies, maybe a few old songs from mommy's high school jazz choir days, but we don't generally rock out at bedtime, for obvious reasons. None the less, I couldn't disappoint my favorite jam session partner.

I had waited for seven years to sing to him, as I had done for his older brother from the day we brought him home in his newborn car seat. Alan had always loved singing with me, and he still does. Wyatt, however, cried inconsolably when I tried to sing to him as an infant. He covered his ears as a toddler. When he was five, he told me, "Mommy, you are LOUD when you sing. Be quiet!" Suddenly, in the middle of his second grade year, he began to ask for me to sing to him. No prompting, no reason, he just asked for a lullaby. I was surprised, but I was thrilled!

But how does one "rock out" and still lull a child into a calm state, suitable for a transition to dreamland? Fortunately, I grew up in the 1980's-- a nightmarish time for fashion, but a monumental decade for "the power ballad." While Wyatt snapped, clapped on the wall and created cymbal sounds with his mouth, I sang "Eternal Flame" by the Bangles. He was happy, I was happy (come on, generation X and Y-- you know you still sing that song in the shower) ... it was fun. Not what I had planned for the night, but I'm glad I was able to be a part of Wyatt's world for a while.

My little guy is growing and changing every day. I think of some of the hurdles he's overcome since his diagnosis (at age two) and I'm nearly bursting with maternal pride! With the help of amazing therapists, teachers, caregivers and doctors, the support and love of our family and friends and God's constant presence in my son's life, the "let's flush everything, because I'm obsessed with the sound the toilet makes" phase, banging his head repeatedly against the wall and the hours of constant echolalia (repeating memorized words, songs or sounds) no longer fill our days. His aggression toward loved ones and inanimate objects is no longer a constant worry. I get hugs, genuine smiles and yes, even musical collaboration from Wy-guy these days-- which I certainly don't take for granted. Time has brought so many blatant blessings our way, for which I am truly grateful. Age, however, has also brought symptoms of his Autism that I was not expecting ...

Apparently, when it comes to kids on the Autism spectrum, regression often happens between the ages of eight and ten, as adolescence begins to set in. I didn't know about this phenomenon, so I certainly wasn't looking for it. He's only seven, so none of the medical or therapeutic professionals who work with Wyatt were expecting it yet, either. However, when you're in Wyatt's world, time tables are meaningless-- unless he's the one setting them! The regression is not in all areas-- it's not even all the time. This, however, we know. His stimming has increased and he's more socially reclusive. I'm hearing more lists of facts and reenactments of TV shows, movies, books and video games than conversations. He's easily overwhelmed, more frequently agitated, and spending more time in his own little world than with us these days. Aside from the return of temper tantrums, he's not being exceptionally difficult to deal with, per se, nor is he unhappy while taking these little autistic journeys. But I miss him when he takes those little "trips" to a place where his mama cannot follow ...

My son who read chapter books at the beginning of the year now needs the familiarity and picture cues from comic books and books for younger children. It's not that he can't read it, he just can't track the subject matter without cues-- especially if hyperbole and metaphors are frequently used. Inanimate objects have become a greater emphasis of his play, because they are predictable and don't require eye contact. Once he zeroes in on a plan, he becomes obsessed with every detail, until it can be completed-- which can be very frustrating when his plans involve things we don't have, such as television studios, airplanes or inventions that have yet to be created. His take on reality trumps any reasoning you can throw at it, which leaves us chasing our tails, while my beloved boy melts down inconsolably.

While that's hard, what's harder still is the daunting unknown. We don't know if any, or all of the regression is temporary or simply our new reality. We don't know if it will get better or worse. We've always looked to the distant future for Wyatt with vast uncertainty, but now we don't know what next month holds. How do we cope?

Enter the amazing therapists, consultants, specialists and "ologists" of all kinds who, unlike Wyatt's daddy and myself, have gone down this road many times before. Even they can't pull out an ASD crystal ball and tell us what stages we will enter and when, but they give us tools to guide our family through this adventure. We will be exploring new therapies, researching, testing and most of all ... waiting.

We wait for insurance company approvals, schedulers, referrals, test results, consultations, intakes ... while, in the mean time, two little boys seem to be dealing with this far better than their parents.

When my oldest saw Wyatt slipping back in to the realm of reenactments, magical thinking and repetition, he didn't freak out. He seemed to look at Wyatt and think, "Okay, I remember this game-- this was fun!" While I worked on explaining this to Alan, his only concern was that his friends wouldn't understand what was going on. I told him to let me worry about that, as I am good buddies with most of his friends' moms, and to go enjoy being ten for a while. Bless his heart, I know it's not easy, but he's a pretty good example to his parents when it comes to "rolling with it."

On the way home from a frustratingly non-engaged therapy session, my son, who had been fairly quiet most of the day, began to talk to me about mythical creatures. I told him I thought being a mermaid would be the coolest, because my most favorite dream of all time involved being turned into a fish (we'd been watching Disney's "The Sword in the Stone" a lot). Wyatt mentioned that maybe in heaven, I could breathe underwater like a fish, or maybe even turn into a fish for a while, if I wanted to. Suddenly, his cheerful countenance turned downcast. Poking me on the shoulder urgently, he stated, "Mom-- I just thought of a problem with this. I would have to feed you FISH FOOD, and I don't think you would like that! Hmmmm ... maybe I could sprinkle some mini-chocolate chips on top of the water? You'd like that, wouldn't you, mom ...?"

And with that, our trip to aquatic imagination land was over, and he began to talk about Wii games. But I saw in that brief moment a child who cared about making his mom's dream come true. He even cared about my potential disdain for fish food! He might not gush emotion right now-- in fact, he's been known to tell me, "Mommy, don't tell me you love me anymore today. I already know it and I do NOT need a reminder." But he is showing his love for me in other ways; in subtle gestures and honest words. If I'm willing to step out of the sadness of progress lost, I will be able to catch those precious moments.

Like his lullabies at bedtime, my relationship with Wyatt is changing-- sometimes without rhyme or reason. But what hasn't changed amidst the stimming, tantrums and incessant dialogue involving Rowan Atkinson (the actor who plays "Mr. Bean") is my son's desperate need for love, understanding and devotion from his family. Even while he is yelling and screaming at me, if I so much as put one hand on the door, he will pause his tantrum and plead, "Don't leave me! I need you to help me!" With one look into his eyes, I see a panicked child who throws about words he doesn't understand in an attempt to comprehend the plethora of abstract feelings swirling around his mind. In spite of the words that still sting my heart and the volume of his ranting ringing in my ears, I hold him. As we rock on his bed, the words change from accusatory to questioning. Suddenly, as fast as his temper flared up, it's over. He melts into my arms, gingerly touching my hair and telling me that he's sorry, and he doesn't know why he said those mean things. No longer a flailing, volatile child and a baffled, frustrated mom, we rock together, basking in the love we share.

My husband and I are leaning on one another like never before. This is big. This is hard. This takes more than either one of us have. We both have to lean on God for strength to just focus our brains after hours of discussing therapy schedules, insurance percentages and phone calls to make the following day. In a time of constant turmoil, Jesus remains the same, which is both comforting and frustrating.

I feel as though I now understand what the Disciples felt as they endured the stormy seas while the Savior slept. I have told God more than once that I am not capable of doing this job and He really should have given my children a more adept mother. I don't know how to do the interventions, plan for the tantrums or even how to plan long-term financially for this storm in my life. When I feel certain the waves will overtake me and I wonder just how much God will allow, I hear in my spirit, "Peace, be still."

Jesus didn't panic when the storm came, because He knew who made the seas and who commanded them. He isn't pacing in heaven thinking, "Oh man, I really goofed when I gave Wyatt and Alan such incompetent parents!" Because He planned our family. He made my children, fashioned their internal wiring and chose the home they would come to. I am NOT strong enough to weather this storm, but He is! There is plenty of rocking and rolling to come, I'm sure. I covet your prayers, as I work toward resting in Him.

In Lenten Love and Friendship,

1 comment:

  1. My dear, dear Amy. I felt every emotion (of course at a fraction of the intensity as you feel them) thanks to your amazing writing. I am so sorry to hear of Wyatt's regression and the challenges that poses. As someone who has enjoyed watching your family from the outside, I couldn't agree more--you are your family for all the right reasons. God has brought you four together and He fully intended it that way. Praying for you, all of you. Love and miss you!