Considering how mundane it was, the photo I posted on Facebook received a gratifying number of “likes.” Just the two of us at a picnic table on a summer day, Daniel wearing the unnatural grin he invariably supplies when told to smile.
By social media standards, life with my son won’t win any awards for excitement or variety. We have few adventures to chronicle, no photos of thrill-packed vacations, sports triumphs or covetable jobs over which to humblebrag. Our interactions are more modest affairs, and ever more predictable.
My friends are sensitive to Daniel’s challenges, though, and supportive of my longing to connect with him after the nearly eight years he’s lived away from home. Their likes and kind comments mean a lot to me, and I recognize that their acknowledgment is one of the reasons I post photos of us at all.
I wonder sometimes if I’m actually seeking encouragement, a kind of validation that these unremarkable visits with my son are indeed worthwhile, that their value exceeds my own longing for something more. Because I feel more like a spectator than the woman once at the center of his world.
In my lowest moments, I question my relevance to Daniel’s life now that he’s a young man, cared for so efficiently by a team specifically trained to address his needs, the behaviors that rendered my care for him obsolete.
I was told to expect a change in our relationship when Daniel moved to this group home eight months ago, a shift in our interactions now that I’m no longer steward of his care, freed from those demands to explore a more satisfying connection as he enters adulthood.
As he’s been out of my care for years, however, this prediction never quite rang true, and I’m beginning to doubt it will ever apply to the two of us. More than ever before I feel I’ve lost my footing as his mother, this part-time role I’ve been playing since Daniel was just 15.
Or maybe I can’t accept that the path beneath my feet may be the one we’ll be traveling from now on.
The scripts for our visits seem to be written before I arrive, and I brace in advance for the ache of resignation which follows me home. I know how these visits will unfold, week after week, the joy of seeing my son tempered by longing for the deeper involvement that’s been missing for months. Crossing into Wisconsin on that dazzling summer morning, the caption for the photo I’d later post to Facebook had already formed in my mind, clear as storm cloud: Picnic with Daniel on a beautiful day. It’s not enough. But it’s what I have.
*****
We met at a local park, and sat together while Daniel tore through the sticker book I’d brought him, affixing the familiar images in their slots as he’s done hundreds of times before. I stroked his arm and caressed his summer-short hair, deflecting as best I could his repeated requests for the soda stashed in my car, his treat for after lunch. His obsessions have intensified over the last few years, and his associations of me, what he counts on when I come, are rigidly defined. There is so little I can give him now. I don’t know how to break the cycle we are enmeshed in, how to change the tenor of our engagement without breaking his heart.
Perhaps I should have tried taking a walk, just the two of us, free of the eyes and ears of the aide who accompanies him wherever he goes, even on my visits. It’s been months since I’ve been alone with my son. The compulsive behaviors we are working to modify are too unpredictable to trust managing on my own, seem to be triggered, in fact, by my presence. Old patterns are difficult to break with autism. Memories of losing control of my son remain, vivid, haunting and formidable.
Yet time with him has come to feel like mandated, supervised visitation, the structure in place to help him dictating the terms of our relationship. I miss time alone with him, privacy as I mother him the only way I can: tender, murmured endearments meant only for him, cuddles and hugs that leave me self-conscious when witnessed by caregivers who never knew my son as a boy, when he was, first and foremost, my child.
I’m ashamed to admit that I crave freedom from the support he so desperately needs, the scrutiny of onlookers I sense weighing my effectiveness with this special young man who used to be my own. The very competency of the staff rakes the embers of my doubt, which has smoldered for years; the guilt that my own care for him was ultimately not enough. I am an interloper, an addendum to the life he is leading now, a life fuller and richer than he’s experienced in years.
I don’t know how to reconcile this sense of loss derived from what should be celebrated, the normal development of my child as he learns a new life apart from me. The bond I’ve been longing to recapture since the day he left home is swaying now under the weight of distance, of time lost long ago.
There is a history I’m still reaching for, written through physical proximity, through countless days of bathing and dressing and snuggling and tickling, of high fives and blown bubbles and brushed hair, of tied shoes and trimmed fingernails, of tedious car rides and leisurely walks on autumn afternoons. A history composed as I fixed meals under his curious eye, enjoyed in companionable silence or giggling banter, unfolding from our seats in the bleachers while we clapped in delight as the dolphins he once loved leapt and splashed at the Shedd Aquarium.
It’s a rhythm scored over years speaking a language without words, weathering together the outbursts and tantrums and setbacks, savoring the small triumphs of our uncommon life together. While resting side by side against his headboard, books or flashcards across our knees; as night after night I tossed his stuffed animals onto the bed as he called for them, laughing, by name: “Zebra!” “Cow!” “Wolf!” It was written by the warmth of my hand across his forehead as I kissed him once more, and once more again, before turning off the light. “Good night, sweet Daniel. I love you, Daniel, my sweet, beautiful boy.”
*****
It would be simpler, wouldn’t it, to accept that he’s moved naturally into a new phase of life, and embrace with gratitude all the good that life offers now, the opportunities the framework of this life provides? Perhaps he is more content than I can possibly understand, taking all he needs from me and our unexceptional visits, the routine we’ve established, the mild experiences of my Facebook posts.
But I believe his life will not be complete without me, and the rest of his family, at the core of it, and I can’t rest until I find that place again. The procedural support is in place to help shift his behavior in a more positive, independent direction. But he needs the emotional nourishment of his mother, too; of all of us who have loved him without question for a lifetime, whose love transcends all circumstance.
I’m not ready to concede that this is enough, that superficial visits are as good as it gets with my son, or our relationship to one another. No line will be drawn beneath Daniel’s life, or my experience with him. I have a role that only I can play, even as I stumble and gasp and bungle my lines. Letting go of my dreams for him has never been an option. Acquiescence to a lesser experience would weaken my fight for him, my advocacy, my hope.
That hope is painful sometimes. But it’s what I have.
Without fail, your blog posts are always valuable, but for me, this one stands out. You go very deep into some real subtleties of this transition, which is so much more complex than people simply “getting used to new things,” or the typical separation-transitions like going off to college or getting a first apartment. The emotional core of our relationships with our atypical boys/men, the joys and heartbreaks, so often buried defensively just so we can be our “best,” if we’re even consciously aware of it all — you hit it, Kristen. Thanks (again)!
Thank you, thank you, David. I remember when Daniel first moved to ODTC (and I’m sure you had similar comments) people told me, “Just think of him as going to boarding school.” Yeah, sure. I do understand that all parents go through these kinds of things, but they are magnified with our guys, so much more intense. I remember thinking about his first group home at Oconomowoc, that it was kind of shabby, and tried telling myself that it was just like a regular college apartment — except it wasn’t a college apartment, it wasn’t Daniel’s choice to be there, it wasn’t anything like that at all. Thanks, as always, for reading and for your insights.
I second all David says here. Your writing is so beautiful and true. You tell the truth and that’s why the sentences are so lovely. The heartache is palpable and the hope is absolutely earned. I feel that I’m right there at that table trying to connect and feeling like a failure while the caregivers look on.. Despite how successful autism is at masking how the victim of it feels, I’m sure your visits register deeply with Daniel. Garrison Keillor often repeats that “Nothing you do for a child is ever wasted.” It’s not sentimental claptrap: it’s the truth. Daniel’s love is there. Autism’s screen can be so, so opaque but the loving son is there. I try to tell myself, every day, and esp. when I’m with Walker, Do your best and then forget about it. Very hard, but worth a try. Thanks for your terrific post.
Thank you for reminding me, Robert, how autism masks things… I do know that Daniel is happy to see me, that he is joyous, in fact, even while he’s obsessing about what I brought for him. I wonder sometimes if he were just “supplied” with his sticker books or soda if he’d be just as happy, but know in my heart that isn’t true. We are so limited right now in what we can do together, all those little mundane experiences that make up a life. And it’s true that if he were a typical 23-year-old I’d be letting go in other ways, but we’d have language and other ways to share, to keep our connection, as I’m blessed to have with my daughter, even as she grows up and away and becomes her own person. I agree with Garrison Keillor, and needed that reminder. Thanks, as always, for reading, for encouraging, for getting it.
Kristen,
I’m so appreciative of your candor and for sharing your gift of introspection.
I can so relate to your sentiments on the visits, in particular when you wonder if your value to Daniel may be confined to just car rides and sticker books. Joe and I travel a long distance to visit Jared, and I feel sad and guilty going back up north if Jared has a bad day, as if I failed to fulfill what he wanted out of our visit. Upon our arrivals, his immediate greeting is not your conventional “hi Mom and Dad,” but “Car ride!” followed “music!” to play his coveted song list in the car, followed by the occasional request of “Culvers” or “McDonalds.” And when our ‘purpose’ is completed, we get the complimentary “Bye!” when he’s ready to go home, which we ,begrudgingly, attempt to understand as a good thing.
Marita, this means a lot to me. Thank you. You visits with Jared sound so similar to mine with Daniel. And I so get the “complimentary ‘Bye!'” — so familiar with Daniel! I too try to remind myself that this is a good thing… so hard to do at times, isn’t it? Thanks for reading and sharing your own experience. xo
Beautifully written Kristen.
To expand a bit on Marita’s comment, we are peripheral to Jared’s life now, not central. He see’s us as his time for a car ride, cookies, and a few other things, but doesn’t even want us to come in the house when we drop him off. He starts saying “bye” to us a few miles before we even get to the home.
The fact is, this is good. It is the best that we could have hoped for. One day we will not be here and he will have to make his way without us; he is showing us now he can do it. Parents need to realize that the best time to engage this transition is while they are here to oversee and assist with it. It is a gift to the child, just as doing it successfully is the child’s gift back to the parent.
Joe, thank you so much for reading. Yes, I remind myself that this is exactly what I dreamed of for Daniel, that, if he couldn’t live with us, then he’d find a satisfying place that would become his own. I know his willingness to let me go, to say goodbye without a fuss, all indicate that he is content, and probably even very happy, with how things are. You are right that it is better for this transition to happen now, while we are still here. His welfare is my main concern, but my own heart still breaks a little through it all. That’s part of being his parent, any parent… Your comments are so appreciated.