Uncategorized – Page 2 – Good Marching

by Kristen - July 25, 2014

Family Togetherness

George Burns once said that happiness is having a large, loving, caring, close-knit family in another city.

In that case, my husband and I are ecstatic.

Andy has such a family, spanning multiple cities near and far. We all get together in July at an annual party my in-laws have hosted at their Michigan cottage for over three decades. This close-knit group takes family seriously, gathering for Independence Day whenever the circumstances of their lives permit.

I’ve been attending this party since 1998, that first summer when we were “Andy’s girlfriend and her eight-year-old daughter.” His family’s generous welcome swept Natalie into a tide of exuberant children as I was embraced by grown-ups thrilled that cousin Andy had finally found “the one.”

The party has been a focal point of my summer for years. Yet it’s been years since I felt truly whole at this model of family togetherness. It’s been years since Daniel has been with us.

***

Days of list-making and strategizing helped quell my apprehension as I prepared for those weekends, and the unpredictable outbursts that marked Daniel’s life, especially in an unfamiliar setting. No excursion was simple with my special little boy, least of all traveling three and a half hours for a long weekend away from home. I knew my son’s quirks and needs would likely trump my fantasy of a breezy weekend together. But those trips to Michigan were the only vacations we took back then, and we looked forward to them, particularly my husband, whose business keeps him busy from March through Labor Day. This is the only weekend he takes all summer to enjoy his parents’ cottage and see his extended family. It was an effort well worth making.

I never really relaxed on those trips, running after Daniel and monitoring his conduct, aware that his unusual behavior can be intrusive. It was exhausting, in fact, keeping him on track and occupied, his interests so often at odds with the agenda at hand, cut off from the stability of home and routine.

It was worth it to me, though. Of course it was. We were attending a family party, and Daniel was part of that family, too.

And Daniel loved the cottage, racing down the wooden steps to the long stretch of beach, smoother than the rockier shores on the Chicago side of the lake, free of disquieting, public crowds. He ran up and down the sand for hours, mesmerized by the pulse of waves across his feet, delighted by the splashes he made, again and again, tossing sticks and pebbles into the lapping water.

I didn’t mind chasing him when he strayed too far, bundling him in a towel and checking for sunburn; climbing the steps for bathroom breaks, cooling him with juice boxes and damp cloths to his forehead, then following him back to the beach for another round.

I didn’t begrudge Andy’s absence during those long afternoons, as he led the party’s golf tournament at the local course. He needed those unburdened hours, reconnecting with cousins he’s kept close since childhood. I got to know the beach-going contingent, through snatched conversations as I followed Daniel’s erratic motion up and down the shore. Supervising him was becoming a two-man operation, but I could still manage him by myself for an afternoon.

Until the inevitable breakdown, stoked by sun, sensory overload, and a boisterous, unstructured milieu. Daniel’s changes of mood, his wild, sudden tantrums, were nothing new, but more difficult to weather away from home. I’d hustle him to our bedroom and a soothing bath, lay quietly with him across the bed, stroking his back and singing softly against his ear until he finally settled and calmed.

By which time he was ready to leave all together, just as the evening of the all-day affair was getting underway. He’d pull me repeatedly to his travel bag, asking for home, or make his way down to the car when my back was turned, until at last I’d get him to sleep, and could rejoin the party for its few remaining hours.

***

I don’t remember making the decision to leave him behind, secure in the knowledge that he’d enjoy himself, as he always did, at his father and step-mother’s home. Perhaps I reminded myself that he would in fact be happier, no longer forced to endure an event which ultimately left him overwrought and overwhelmed. One year we simply conceded that the sprawling, festive party the rest of us enjoyed was not right for my son, however much I wanted it to be.

It was the right decision. I know this. The rest of us needed down time, freedom, for Andy to reinforce the relationships he’s maintained through his lifetime, for Natalie and I to find our places in the family we now called our own.

But the party was never the same, for me, without him.

And I understand now that the party was never the same with him, either, never matching the scenario I’d imagined, the nurturing, familial experience I wanted so badly to find in this occasion, for both my precious children. Autism had already shredded the screenplay I was still trying to direct; I was merely clinging to pages of an untenable script, unwilling to accept that my family could never enact the story my heart had written. This happy party scene had already been scrapped from the film of our lives together. I just wasn’t ready to let it go.

***

The parties are easier for me now. I can engage, and laugh, and converse, and, in recent years, help run the whole companionable show, unencumbered by my son’s needs and demands, my simmering worry that he’d turn miserable and unreachable in the midst of all the wonderful togetherness.

I still remember, though, the moments when he was happy there, lulled by the motion of waves and the warm sand beneath his feet. I remember his joy as he ran to toss another stick across the water, pleased with his accomplishment, twisting his fingers in front of his face as he does when he is happy. I wish those moments could have lasted, could have been enough to make the experience whole. But they are what we have, and I cherish their memory.

A few years ago I called to tell Daniel’s group home director that I wouldn’t be visiting that weekend because I’d be in Michigan for a family reunion. I described our earlier visits to the cottage, how we tried to make those weekends happen in spite of Daniel’s limitations.

“He loved it there, Sam,” I told him. “He loved the beach, if just for a little while.” My voice broke with unhealed regret. Daniel had been going through a rough patch in recent months, and I felt guilty that I wouldn’t be visiting. “I just can’t accept it, that he may never see that beach again.”

Sam was silent for a moment, then spoke with the quiet confidence that always reassured me.

“You’ll get him there, Kristen,” he told me gently. “It may take 15 years, but you’ll get him there again, someday.”

I’m holding on to that script for now.

There are still scenes of our lives yet to be written.

by Kristen - June 12, 2014

A Girl Like You

As a teenager my daughter claimed an aversion to alarm clocks. Although perfectly capable of getting up on her own, she maintained that the raucous jolt of an alarm set a negative tone for her whole day. She begged me to wake her personally.

Being a loving mother I obliged, devising a wake-up formula just for her.

She really would have fared better with an alarm clock.

Barging into her bedroom each morning, I’d launch into one of several inane monologues, which all shared a unifying theme.

“Girls like you,” I’d bellow, “you want to sleep late in the morning. But your moms won’t let you.” Or, “Girls like you, you think because you’re 16 you can get up when you want. Forget that!” And occasionally, “Girls like you, you wish your moms would go back where they came from. But they’re not gonna.”

Why I fastened on the phrase “girls like you” is a mystery hardly worth probing. Perhaps an old boyfriend’s frequent muttering of a song refrain that’s stuck in my head since the mid-eighties — “Girls like you always like my style” — was the genesis of the whole thing.

Whatever its source, the “girls like you” drill became entrenched, despite Natalie’s pleas for me to “Stop!” as she pulled the duvet over her head and rolled to face the wall.

For good measure I’d confirm that she wouldn’t go back to sleep when I returned downstairs. “Can I really trust you to get up?” (shortened over time to “Can you be trusted?”) I’d wait by the door for her aggrieved but unfailing response: “Yes! I can be trusted!”

Sounds silly, doesn’t it? Yet it is one of my fondest memories, a pattern woven into the fabric of our lives together, as my daughter grew from a child into the young woman she is now, ready to start the next chapter in her life.

A week from now she’ll receive a Master’s degree in Marriage and Family Therapy from Northwestern University. My pride in her as one of the top students in her class is matched only by my certainty that she will make a positive mark on the world.

Do you remember those mornings, too, Natalie? Did you take comfort in a ritual that was ours alone? Sometimes I allow myself to believe that it was all a front, that your alarm clock phobia was simply a reason to feel me close as you began each day, bracing for whatever challenges adolescence threw your way, strengthened by the knowledge that I was in your corner.

I hope that was part of it, that you recognized that my love for you will transcend whatever unfolds, and you know that wherever life takes you now, I will always be behind you.

If only the act of waking you each morning could truly have shielded you, magically softened the experiences I never wanted you to know, the losses and heartbreak I’d give anything to have removed from your path. I wish your passage to adulthood had been gentler, untouched by divorce and the sudden deaths of friends, the loss of my parents when you hadn’t yet fully known them, the profound upheaval of the family your father and I had imagined for you before autism changed our lives.

If love was all it took, your life would have unfolded as effortlessly as I’d dreamed it would when you were a little girl, running barefoot down the sidewalk in a flowered dress on a summer evening, laughing with the unfettered delight that was uniquely yours. I wish I could have captured that moment for you, and made it last forever.

But that wasn’t necessary, after all, for you to become the remarkable young woman you are today. There is something magic in you that did the job on its own.

Do you remember when I started calling you my shining star? That’s all right; I can’t remember, either. It has simply always been so. You are the daughter every parent hopes for: smart and kind, engaging and beautiful and naturally, genuinely good. A leader who accepts responsibility even when you doubt your abilities, a friend who can be counted upon, a sibling to a boy who has been blessed beyond measure to have you in his corner.

Even as his disability altered your life so dramatically, as his needs so often eclipsed your own, you embraced him, loving him even when he didn’t express that love in return. You’ve never stopped trying to reach him, to convey your devotion in a way he will understand. And there is no doubt in my mind that he does understand. The strength of your love broke through.

You’re probably reading this and crying “Stop!” as you did all those mornings when I jarred you annoyingly from sleep. Don’t worry. I’m not claiming that you excelled at everything. Piano lessons, for example, come to mind.

What sets you apart is your willingness to try, to test yourself, your commitment to see things through without giving up. You’ve gone forward even when you felt like quitting, and have inspired me to do the same. You have forged the painful chapters of your life into something meaningful, something hopeful and positive and worthwhile.

Stop rolling your eyes; it’s not just your mom saying these things. Remember what your teachers have told you for the last two years: you are incredibly smart, gifted and compassionate; you have what it takes to be an excellent, effective therapist; and most important of all: you have a good soul.

Looking back now, I realize I had it wrong all those mornings with my “girls like you” routine. There is no one else in the world like you, beautiful Natalie. A girl like you is one of a kind.

My aim as your mother has always been to give you and Daniel what each of you needs, in spite of your vastly different abilities. I prayed that I would not let your brother’s disability cripple me, so that in turn I crippled you; that I would not hold you back through my own grief and self-doubt, that my longing to protect you as recompense for autism’s impact would not hinder your own confidence and initiative.

I don’t know if I succeeded. I pray you will forgive me for all I’ve done wrong. But it doesn’t really matter if I succeeded or not. Because you have.

Your success is demonstrated in the way you are living right now, as I write this, with details still uncertain, as you are waiting to see what lies just beyond your sight. And waiting for what is yet to be revealed is one of the hardest things in the world to endure.

But you are doing it, my beautiful girl. You keep moving forward, strong enough to confess your fears even as you take the next step, and the next after that. You remind me of your grandfather, who knew the only way through it is through it, who put one foot in front of the other until he reached where he aimed to go. He is smiling down on you now, sweet Natalie. He is so incredibly proud of you, as am I.

Each day I marvel anew at the woman you have become, standing on the threshold of independence and all the wonder the world has in store. I know you will never give up until you have found your true place, the place you are meant to be. And you will make that place better than it was before. This is one thing I know for sure.

You can be trusted.

by Kristen - April 9, 2014

The Back Door Protocol

When I worked as a church secretary, the treasurer received jokes via email from his friends across the country, and often shared them with me.

Our favorites were the “church bulletin bloopers.” Maybe you’ve seen this collection in one form or another: “For those of you who have children and don’t know it, we have a nursery down stairs.” “The Rev. Merriweather spoke briefly, much to the delight of the audience.”

And the all-time winner: “Low self-esteem support group meets Wednesdays at 7 pm in Fellowship Hall. Please use rear entrance.”

That unfortunate blooper came to mind one evening at my own support group, which I’d formed to address the emotional impact on parents raising special needs children.

A young woman had recently joined the group, having come to the US from Japan just a few years earlier. She hadn’t said much during our meetings yet, content to listen, comforted, it seemed, to be among other parents who understood the challenges she faced her with her six-year-old son on the autism spectrum. She had a story to tell that night, though, and described, in halting, beautifully accented English, what had happened at her son’s school the week before.

Morning drop-off, apparently, was a noisy, boisterous confusion of jostling and commotion as the students greeted each other at the school’s entrance each day. Overwhelmed and overstimulated, her son typically became agitated, shrieking and covering his ears, trying to shut out the sensory overload assaulting him from every direction. Getting him inside the building was a daily battle, a poor start to an already challenging school experience.

The teacher and school principal had come up with a solution, however. They asked my new friend to drive around behind the school each morning and deliver her son to the the back door, where he would not be disturbed by the other student’s behavior. “We think he’ll do better that way,” they’d told her, smiling reassuringly.

She held her head down while telling us her story, staring at her hands while plucking at a thread on her jeans. “I understand,” she said quietly. “The kids — they are just being natural.” And her son didn’t care, she said; he didn’t even realize he was being singled out for special treatment, treatment another child may consider punishment.

“He does not mind,” she told us, looking up then. “But I….” She paused, searching for the words in English to describe the anguish written on her face. “I hurt,” she concluded softly. “It hurts me.”

The insulation protecting her son could not also protect his mother.

Rationally, my friend knew her son was unperturbed by the school’s pragmatic response to the disruption his behavior caused. She understood the school’s responsibility to balance the needs of all their students with the exceptional needs of her son, and acknowledged that her son did fare better with a calmer start to his day. Perhaps she’d begun to recognize that this would be one of many compromises made necessary by her son’s autism, that greater losses than not entering school through the front door like a “normal” student may lie ahead.

No slight was intended, no suggestion made that her son was any less deserving of respect than the other children. She knew this. She even acknowledged that there was nothing inherently wrong with his entering the school by the back door, that the implications of his being asked to do so were in her mind, not his.

But it haunted her. It hurt.

I hope it helped her to tell us her story that evening. I know it helped us to listen.