Autism: When to push and when to stop

By Lauren Swick Jordan April 1

TJ and the author. (Courtesy of the author)
My son, TJ, is 15 years old. He has autism.

When TJ was in elementary school, we worked tirelessly on so many issues. Sitting up for the entire circle time. Sitting through the entire lunch time without a meltdown. Taking turns and sharing. Accepting disappointment when something didn’t meet his expectations.

All things that every child must work on.

We also focused on more TJ-specific things, like his pencil grip. From the get-go in kindergarten, his grip was all his own. Nothing like that of the other children. His teachers tried many different ways to remind him to correct his pencil grip in hopes it would become a habit: notes on his desk with proper pencil grip pictures; verbal reminders; plastic grippers on his pencil that would forcibly enforce the correct grip.

None of them worked.

Finally, when he was in middle school, his team of teachers and therapists, along with my husband Sean and I, decided that since his handwriting was clear and legible, we didn’t need to enforce the “proper” pencil grip any longer. We let him use whichever grip he used naturally.

It hasn’t been an issue since.

As an autism parent, I frequently ask myself a big question:

What tasks and traits do we keep working on with him, and what tasks and traits do we let go of? What do we accept as being “naturally TJ,” and what do we think he will benefit from if certain things change?

I remember Temple Grandin, a famous autism pioneer, author, public speaker and person with autism, saying something like this (I’m paraphrasing): “The best thing my mother ever did for me was to treat me like the rest of my siblings.”

This has always been in the back of my mind, ever since TJ was diagnosed with autism when he was just over 2 years old. In certain cases, it is very applicable, and I believe has led TJ to some great successes:

He and his brother both sort, clean, fold and put away their own laundry. They both walk the dog. They both have cleaning responsibilities around the house.

You get the idea. It has worked in these cases for us to have the same expectations of TJ as we do of his neurotypical brother, Peter.

But what about other things we want for TJ?

Take, for example, socializing. This has been one of our biggest goals for TJ and has also been the most difficult one to master.

I struggle with this goal all the time. Should we keep pushing? Should we let it go? It is the area where TJ’s skills are the most lacking, and at the same time, in our minds, one of the most important ones.

But for TJ, is it important? At all?

The back and forth is constant, but thinking back, so were so many other struggles we have encountered in the past.

I have to remind myself that just as we have found clarity on all of those other issues we have previously had, so we will eventually find clarity on this one. We just have to stick with it, for now, hoping for even a little bit of gain. And eventually, we will know when it’s time to stop pushing and let TJ’s own socializing self (or not) take its natural course.

And I have to remind myself that with each new issue that comes up, we will help TJ tackle it as best as we all can — challenging him where we can for growth, and stepping back where we need to.

Time will tell. It always does.

Lauren Swick Jordan is a frequent On Parenting writer and blogs at Laughing…like it’s my job.

My son with autism is going to college. Cue the happy tears.

One of the great parental rites-of-passage is when your eldest child receives their first college acceptance letter. If it happens to be the school that he or she so wants to attend, then it’s a moment of genuine celebration, tinged with the bittersweet knowledge that the adult leave-taking is beginning.

But when, like my son Max, your child is autistic, and that first “you’re in” letter lands on the doormat… well, full disclosure, I found myself sobbing uncontrollably. Because early on in Max’s odyssey along the autism spectrum I was categorically told that the hope of him ever having a so-called “normal life” — let alone eventually going off to college — was beyond the realm of possibility.

Ask any parent of a child with a disability and you will usually get an earful about the all-encompassing uncertainties that accompany having a son or daughter with “special needs” (to use that politically correct catch-all phrase). These parents are acutely aware of the fact that — in its brutal, happenstantial way — life can suddenly deal you some very bad cards. Only retrospectively — many years down this track — do you also begin to realize that how you, the parent, grapple with this determines so much of your child’s future.

I was a late arrival at that station marked parenthood. When Max showed up in the world I was a 37-year-old American writer based in London, married to an Irishwoman in the film business. Though there was a moment of panic in the delivery room when a midwife discovered that the umbilical cord was wrapped around his neck, Max hit all his early developmental marks and seemed to be a cheerful, engaged baby with decidedly night owl tendencies.

But then, when he was three, his connection to the world around him gradually began to diminish. Our growing worries were magnified when the head of his kindergarten called us in to observe him sitting alone in a corner of the playroom, withdrawn from his peers, staring blankly into the void beyond the nearby window. A briskly clinical educational psychologist diagnosed him with a receptive language disorder, meaning he had trouble understanding and processing what was said to him. She mentioned a private school that — as she noted in her crisp, bloodless Anglo way — “specializes in these sort of things.”

On the recommendation of that cheerless diagnostician, Max spent two years at a posh, rather a useless school for children with language disorders in a leafy corner of South London. Not only did he make no progress during his time there, but the headmistress once dismissively told me: “Max’s prospects are simply limited. At best he will be happy within himself.”

After this conversation, I started frantically researching other educational possibilities. And then, out of nowhere: Disaster. Max developed a series of nervous tics. He had tremors that left him disoriented and confused. I brought him to a pediatrician who said Max had Attention Deficit Disorder and put him on a course of Ritalin.

Ten days later, while my wife was on a business trip, I walked into Max’s room to discover that while he was physically present, he wasn’t responding to any outside stimuli. When I called his name, when I took his face in my hands and begged him to answer me, he stared back at me with eyes as glassy as a lake in winter. He was a vacant shell.

Lifting him, I discovered that he had lost control of all bodily functions. I raced him into the bathroom, washed him down with the shower hose, then called the local children’s hospital. Minutes later I was negotiating rush hour traffic. Halfway to the hospital, Max was hit with a convulsion that lasted one long terrible minute. Seated next to him, in her child seat, his two-year-old sister Amelia stroked his head with her left hand, willing his seizure to stop.

When we reached the pediatric neurology ward, my son was hooked up to an EEG machine to measure his brain waves. When the EEG machine whirred to life — Max’s head now covered by twenty electrodes — the needles on the monitor went berserk. It was like a mad Jackson Pollock canvas mirroring the electrical activity in my son’s brain. The resident neurologist was on the scene moments later. His voice remained calm, level, as he told me: “Your son is in the throes of a very severe epileptic incident. I know it is frightening, but in most cases the child comes through this.”

In most cases. This qualification unnerved me. He sent us across town to a specialist he felt best equipped to handle this “incident.”  An hour later I was in the consulting rooms of another doctor. He walked in as I was holding Max down during another convulsion.

After studying him intently, the doctor crouched by my catatonic son and said: “So Max, how does it feel to have taken five years off your father’s life?”

Then, gripping my shoulder with his hand, the doctor said what I was longing to hear: “I think I can get him back.” That doctor became both my ally and friend. Especially as it took another three months and many pharmacological adjustments for Max to emerge from his walking coma. When Max could talk again, the doctor sent him one of England’s top experts on autism, who officially diagnosed Max as being mid-range on the autistic spectrum.

After that, the wife of a friend put me in touch with a fellow American in London who was the mother of two autistic boys. She introduced me to a controversial way to teach autistic children that were pioneered at UCLA by Norwegian psychologist Ivar Lovaas. Known as the Lovaas Method, it also goes by the name of Applied Behavioral Analysis, and is noteworthy for its brutal 40-four hours per week one-on-one therapy that reportedly reorders the autistic brain.

With my friend’s help, I set up a Lovaas school for Max at home. And thus began the process which saw him accepted, 14 years later, at Ringling College of Art and Design. It was a frequently arduous journey. The early months of the therapy saw Max howling his head off as the chief tutor began to chip away at his autism.

I had to fight to get Max into the one secondary school for autistic children in London — and then had to fight again when our local borough closed it down (nasty budgetary cuts). I had to fight to get him into one of the few state boarding schools in the United Kingdom for autistic children. But then it was Max who insisted — when a teacher suggested he consider vocational training — that he wanted to get the British equivalent of a high school diploma. And it was Max who said yes, three years later, when I asked him if he was ready for college.

When it came time to start the college admissions process I was a divorced man living back in the United States. It was Max who, without my help, wrote a remarkable essay entitled ‘My Life with Autism,” which accompanied all his applications. Ringling was his first choice — and Ringling was the first of four schools that said yes to him.

Three and a half years on, Max came to visit me in Manhattan for Thanksgiving. He grabbed a taxi in from JFK International Airport alone, checked himself into the hotel I arranged for him, walked alone to my home and went with me and his sister to four plays over the weekend (we’re all culture vultures).

He especially had many things to say about “A View from the Bridge” on Broadway, which he pronounced brilliant. He asked,  “Do you think Eddie Carbone knows he is writing his own destiny? That’s the Greek tragedy part of the play, right?” I thought back to that dismissive headmistress in London who told me that Max’s future would be, at best, limited. And I said to my son — all of whose extraordinary achievements are the tribute to his fierce desire to defeat the autism that so tyrannized him for years: “Writing your own destiny can also be a wondrous thing”.

Douglas Kennedy’s 12 novels include “The Big Picture,” “The Pursuit of Happiness,” “The Woman in the Fifth” and “The Moment.” His new novel is“The Blue Hour.” A native New Yorker, he now divides his time between Manhattan, Maine, and Paris.

Reaching my autistic son through music

Screen Shot 2015-12-21 at 3.44.43 AM.pngBecause he does not speak, and most likely never will, my son Dominic and I communicate through music.

It began as an early act of desperation, as we drove home from the hospital, two exhausted parents and one round, red-faced baby, crying inconsolably in his car seat. I cushioned my belly full of staples and leaned forward to turn up the car radio, helpless and desperate to calm my 2-day-old’s sobs. Within the first few bars of music from the oldies station, my son closed his eyes and slept a placid sleep. It was the most peaceful I had seen him since he had emerged from my womb. And it was the first time since his birth that I, too, could close my eyes.

As the first few weeks of Dominic’s life unfolded, he became an expert at crying. As morning stretched into afternoon, he was impossible to satiate. His sobs weaved into the soft strains of the evening and later, they followed me unshakably, as I paced his bedroom, cradling his small shape in the night-time darkness. So I took comfort under a blanket of music, covering the house at all times, to soften the blows of his screams and to keep me from losing my mind. It quickly seemed that the music was the only way to calm us both. And the more the music seemed to calm us, the more I played it.

At first, it was Chopin, because his piano nocturnes took me from the nursery, into 19th century Paris and far away from the painful feedings. But as Dominic was awake more during the day, I experimented. We tried pop and old school R&B; we moved on to soundtracks. Often my husband would leave the baby and me for work in the morning, the strains of “Joseph and the Amazing Technicolor Dreamcoat” trailing him out the door and he would return, 10 hours later, to the imposing beat of the “Imperial Death March” echoing on the walls.

Shhh, I would whisper to my husband, holding up my hand, as he walked into our apartment. The baby really likes this part.

There was a certain absurdity in trying to cater to the musical tastes of a 4-month-old, but I was sleep-deprived, desperate and hormonal. And I quickly learned that my son Dominic was not an average baby. I lived in a constant state of mothering crisis management, anything that would give me a respite from the screaming was something I was willing to try. And as long as the music worked, I would use it. I soon learned that his favorite song was “Danny Boy,” the Bing Crosby version. Within the first few opening notes, my son would always turn and face me, his eyes wide open and a dreamy look on his small face. I had no idea where Dominic went, inside himself, when I played this song for him, but he went somewhere wonderful. I was his mother, and even though we could not communicate with words, I knew the music was his escape from a very confusing world.

As the months passed, I began to understand there was something very wrong with my boy. Even as his excessive crying dissipated, he missed milestones at a concerning rate.  There were no first smiles, no laughing, not one word. While he would go silent and starry-eyed at the first strains of Danny Boy, Dominic would still not say “mama” or shake his head to say “no.” Months turned to years, soundtracks turned to old jazz standards, and my fears turned to heavy, tangible concerns. The first time the doctor used the word autism I actually felt a flood of relief. Now that I had a name for what was wrong, I could find a way to make it better.

Except it didn’t get better. While the crying lessened as he grew into childhood, the frustration grew too, for us both. My son was frustrated that he couldn’t tell me what he wanted, that I did not just know what he needed without words. And I was frustrated because I couldn’t find a way to make him understand just how hard I was trying to understand him. 

So we relied on the music to speak to one another. In the supermarket, as he scrunched up his eyes and arched his back at the glaring, bright lights and the noise of the other people, I would lean in and put my mouth to his ear. “Oh, Danny Boy, the pipes, the pipes are calling.” And as though it quieted the pain in his head, he would hold my face in his sticky hands and listen to me sing. While strangers watched and wondered, I pushed the cart defiantly and sang that song until my basket was full and my throat was dry.

He is 12 now, my silent boy. He doesn’t cry much anymore, nor does he say, “Mom, I need $10 for the movies” like other boys his age. He never said “mom” at all —because of his autism, he can’t speak very much. But it doesn’t bother me much, anymore, really. It is what it is. And I know how to calm him, I know what gives Dominic joy.

At night, I will hear the faint strains of Chopin slipping out from under his bedroom door and I will think of holding his small body, staring up at the moon in the middle of one of those first sleepless nights. I will play his favorite soundtrack in the car as we go speeding down the expressway, and take pleasure in the way he loves to roll the window down and let the wind whip through our hair.

Sometimes, when I am feeling nostalgic and missing a time in my life that I never thought I would miss, I will load up “Danny Boy” on the stereo. And wherever he is in the house, Dominic will find me. He will come and listen, with the same wide eyes and the same dreamy look I remember. And then, he always goes to that somewhere, far off place inside himself. “Oh, Danny Boy, The pipes, the pipes are calling. From glen to glen and down the mountainside. The summer’s gone, and all the roses falling. It’s you, it’s you must go and I must bide.”

I do not know if he understands that this song was part of the earliest language we spoke, as a mother and a child. Nor do I know where he goes, when he loses himself in the music.

I just know that as long as we share it, as long as we have the music between us, he will always take a part of me with him.

And I know I want to go where Dominic goes, whenever the music plays.

Nicole Jankowski is a mom of four kids and two awesome stepkids, a divorcee and a writer. Read about her experiences with autism, addiction, and awesomeness at www.momof4istired.com or on Facebook and Twitter.

 

“I’m the Stupidest Kid in My Class!”

What to Do When Your Kid Says Heartbreaking Words Like These

When their hearts break, our hearts break. It’s one of the excruciating mysteries and blessings of being a parent.

We love our kids, and know just how amazing they really are. So when one of our kids is feeling inadequate or discouraged, we want desperately to fix the hurt.

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