The Parenting Regret That Caught Me By Surprise

The pacifier was a sign of weakness, of immaturity, of difference…. James was attending a regular pre-Kindergarten, and I thought he needed to look like a regular pre-Kindergartner. Even in bed.

I took away my son’s pacifier when he was four years old, and I still regret it. 

It seemed like the perfect time. We’d just watched Toy Story 3, in which Andy sorts through his childhood belongings before heading to college. He decides to store the important ones, including Buzz Lightyear, in the attic. 

My son James, who has autism, took an interest in our attic. What was up there? What could we put up there?

I jumped at the chance. From his toddler years, I’d done my best to restrict the pacifier to his bed. I was a child psychologist. The very thought of running into one of my patients around town, pacifier-sucking behemoth in tow, made me want to hide my head. 

Plus, everything I’d read cautioned about pacifier use once kids started getting their permanent teeth.

The pacifier was a sign of weakness, of immaturity, of difference. I knew James had some developmental delays, but when James was four the idea that he had autism was relatively new. James was attending a regular pre-Kindergarten, and I thought he needed to look like a regular pre-Kindergartner. Even in bed.

So James and I packed his few remaining pacifiers into a Ziploc bag and made a trip up to the attic. “Where do we put them?” he asked, looking around at the vast, dusty, hot, mostly empty space.

I suggested a ledge near the attic entrance, “so we can visit.” He set them down, gave them a little pat, and said, “Bye, passes.” He climbed down the attic stairs and headed to the playroom, seeming none the worse for wear. 

James never asked for his pacifier again, but that didn’t mean he didn’t miss it. Like lots of kids with autism, he had uneven language development. At that point, he’d still never told me he was hungry, never told me he was thirsty. Even though he could give the proper technical name for any construction truck he might spot around town.

When he had a strong need he’d have a tantrum, and I’d have to figure it out. 

I have a family history of premature pacifier disposal. My older brother loved his pacifier, but my mother decided he needed to give it up at barely age two. A friend suggested she take my brother to the zoo and feed it to the baby raccoons, reasoning that they needed it more than he did. My brother had nightmares about the baby raccoons for months afterward.

I knew all about the raccoons. Letting James use a pacifier for two extra years was my way of learning from my mother’s mistake. If I’d known then what I know now, I’d have let him keep it as long as he wanted and use it whenever and wherever he wanted. 

The pacifier wasn’t a problem, but a solution.

Looking back through home movies recently, I confirmed something: James’ younger sister started sucking her fingers before she was an hour old. 

“Wow, look at her,” I say in the video. “So strong.” Seeing the video reminded me of how competent infants can be. 

I saw an infant at a Mardi Gras parade, which is not at all unusual or frowned upon here in New Orleans. The baby girl rubbed her forehead against her mother’s chest in the Baby Bjorn, soothing herself to sleep as the marching bands blared. It was 1:00, after all. Naptime. 

That kind of self-regulation is so hard for people with autism. So hard for James. James used the pacifier in his bed, to help him cope with the stress of being tired and of being alone in his room. With all that was going wrong with James, that led to his autism diagnosis, his self-soothing with the pacifier was something right. 

What’s two extra years? If James had done as his sister did with her fingers, kept sucking his pacifier for comfort until age six, then given it up on his own, the whole thing would’ve been a success story for James. I shouldn’t have butted in.

I’ve developed a rule of thumb. It started with my acceptance of James’ autism and my own limitations in coping with it, even though autism was my specialty for ten years before his birth. 

My first choice is always to find what James is doing right, and bolster that. Tackling a problem – which might exist only in my mind – is always the last resort. 

Navigating Disney World With Autism Spectrum Disorder

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Most people are beginning to understand that Autism Spectrum Disorder means different things for different people. What’s less commonly understood is that it means different things for the same person at different times.

This year my husband insisted on a trip to Disneyworld. I’d resisted because our nine year old, James, has Autism Spectrum Disorder. James can blend in with his non-autistic classmates, but this was Disney: three solid days of overstimulation, temptation, distraction, and surprises.

 James is only one member of our four-person family. We also have a seven-year-old princess. I mean daughter. 

I visited an easy-to-find section of Disney’s website: Services for Guests with Cognitive Disabilities, “including those on the Autism Spectrum.” Inside was a chart with sensory details on each ride: smells, bumps, sounds, flashing lights, periods of darkness. There were videos to help kids prepare, and lists of what to bring, such as headphones, earplugs, or a favorite toy. There were maps to special “break areas,” where people could go if they were overstimulated. 

All the basics that most people with autism need.

The tricky part is, James is like most people with autism, in that he’s not like most people with autism. Autism features a wide range of presentations, from severely developmentally delayed people who can’t speak, to college-educated professionals. So each person’s needs are highly specific. 

James didn’t need a sensory guide. When it comes to roller coasters, the louder, the flashier, the bumpier, the better. But crowds? Unfamiliar foods? Unexpected closures? Far-away restrooms? Any of these, and especially these in combination, could ruin the trip.

Exhaustive preparation is always my best defense. Disney offers Fast Passes for free to all visitors, not just those with disabilities. They were all we needed (beyond advance dinner reservations and a restriction on overdoing it) for our first two days in the Magic Kingdom. A Fast Pass gives you a generous time window during which to report for a ride, and admits you to a fast-moving line once you show up. 

Our first day, we had a hint about what was to come. We hit Big Thunder Mountain Railroad, our second planned ride, about 45 minutes ahead of our Fast Pass. I decided we’d wait in the regular line, which looked short to me. 

Well, actually James decided. I wanted to use our Disability Access Pass, which we’d obtained within our first 15 minutes at the Magic Kingdom. It would have functioned like a Fast Pass, sparing us some time in line but not swooping us to the front. 

“I understand,” the young woman at the desk had murmured before the second half of “High Functioning Autism Spectrum Disorder” was out of my mouth. Then she asked to take James’ picture.

“Mom,” James whined, looking around us. When I’d first mentioned the pass to him, he’d put his foot down. “Disability Pass? No. I don’t need special treatment.” 

Cool kid, right? 

Before I was James’ mother I was a child psychologist specializing in Autism Spectrum Disorders. I follow my own advice, even though being the mom is nothing like being the psychologist. Instead of supporting James in his attempt to tough it out, I made him get the Disability Access Pass, which afterward he referred to as the Autism Pass. 

Any little bit could help.

Back to Big Thunder Mountain. Disney lines snake around, so that you can’t tell you’re near the front until just before you hop on the ride. At precisely the 30-minute mark, James abruptly stepped within a millimeter of the young woman in front of him and growled, “I hate this person. I’m going to push her.”

He didn’t push her. He never planned to. This was just his way of saying he’d had enough waiting. Unfortunately, I could tell by the young woman’s face that he didn’t look at all autistic to her. 

He looked like a brat.

Later, I asked James what he would rather be: A brat, or a person with autism?

“I just hated that girl. She was in my way.”

I explained and explained, but in the end he agreed only to this: 30 minutes in line was his limit. Beyond that, we would use the Autism Pass. 

Bystanders are beginning to understand that Autism Spectrum Disorder means different things for different people. What’s less understood is that it means different things for the same person at different times. 

Hopping out of the front car of Space Mountain, high-fiving his dad and exclaiming, “That was awesome!” James looks like a typical nine year old. But tack on a few discomforts and uncertainties, and suddenly he’s scratching gashes into his own forearms and yelling, “Put me up for adoption!”

I’d do anything to prevent one of these rare outbursts. As she arranged our Disability Access Pass, the young woman had asked, “Is there anything else I can do for you?” 

I said no, because I didn’t know where to start. At the end of our trip, I tallied up a wish list:

  1. A private taxi from our hotel room’s door to the front of the park.
  2. The cell phone number of the taxi driver so we could escape at a moment’s notice.
  3. Immediate service at any restaurant offering plain hamburgers, hot dogs, or cheese pizza.
  4. Immediate restroom access within 100 feet of any ride.
  5. For all gift shops to hide their Star Wars action figures, until such time as we were ready to make a purchase.
  6. A magic pod that would transport us swiftly through a crowd of any size, so that we wouldn’t have to dodge people as we walked.

Recall that James doesn’t want to draw attention to himself, and it’s an impossible situation. 

I wanted that magic pod, and I wanted it to be invisible, too.

Like Disney proved in their guide, I know what’s likely to trigger my child with autism. I zero in on these triggers and try to snuff them out completely in the name of family fun.

But spontaneity is also part of the fun. By the third day, even as James’ stress level increased, we both appreciated the pop-up parade, the roaming Tigger, the Mickey-shaped waffle. We’d have missed all that if I’d fulfilled my list.

8 Things You Need To Know Before Giving Your Child Psychiatric Medication

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8 Things You Need to Know Before Giving Your Child Psychiatric Medication

GoodHousekeeping.com

Medication has been an important part of the complex process of taking care of my son. I credit one psychiatric medication with getting him out of his bed and into the kind of mischief you’d expect from a 4-year-old, like appearing on top of the refrigerator. I blame another medication for temporarily turning him into a dozing Eeyore.

http://www.goodhousekeeping.com/life/parenting/a38719/putting-my-son-on-psych-meds/

Cold Inside

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Before I had children, Autism Spectrum Disorders were my specialty. I reduced my child psychology practice to half time after James came along, and soon realized I couldn’t close the door on autism at the end of the workday, because it was in my house.

I first heard about autism in high school, at a children’s residential facility where I volunteered. Sam was lying on his back and spinning around in circles by kicking his feet, as if on an invisible merry-go-round. He wasn’t brushing his teeth alongside the other children, because he was having too much fun at his own carnival.

I determined to become part of Sam’s carnival, and eventually learned to play with kids whose parents thought they couldn’t play. So 20 years later, why did I find myself on our playroom floor, my back against the sofa, writing down everything James said, while he did his own thing? “You sit on that. You like that. You put it down there,” I transcribed, noting he had his pronouns reversed. I hope I took the time to talk to James as I wrote, but I don’t remember.

My son was a loner. It didn’t come naturally to him to connect with anyone, including – and maybe especially – me. Instead of crying or looking for help in a tough situation, James mounted a noisy protest. Every tantrum was a puzzle. When he started talking, my first sign that he’d hurt himself was hearing him screech, “No ice!” as he ran away from me. If I figured out he had a pebble in his shoe, captured him, and removed it, he calmed down immediately.

By contrast, every time I kissed James’ cheek, he would rub the spot with his hand, looking away, like a teenager. He was unaffectionate. He had sensory issues. Of course. He had autism.

I knew that underlying health issues could be a source of toddlers’ developmental and behavioral problems. So, I arranged a medical evaluation for various thyroid, allergy, immune, and metabolic problems that might have been an easy fix. And the doctor found something. We discovered that one of James’ vaccines hadn’t been effective, exposing him to frequent upper respiratory infections. And all that time I thought he had allergies. He got a booster shot and the colds went away, but the autism didn’t.

That’s right, I’m the mom who thought that a vaccine might cure her child’s autism.

Practically speaking, as part of these work-ups three-year-old James had to have his blood drawn three times in three weeks. Although James freaked out the first time, the second and third times he patiently held out his little arm as the nurse poked around for his tiny veins. She kept looking up at his face, waiting for him to blow his stack. He never did.

The nurse remarked, “This is the best-behaved child I’ve ever seen!” Then she gave him a jumbo pack of Starburst and a full roll of stickers.

Her compliment felt like an accusation. I was still out of breath from forcefully extracting James from under the Lego table in the waiting room, where he’d been holed up catlike for a half hour. Before that, I’d pried him out from under the car seat, and then carried his noodle-like body through the parking lot. Back at home, he’d resisted brushing his teeth, getting into his clothes, leaving the house, and getting into the car. The whole way out to the suburban office he’d looked out the window, exclaiming with joy anytime he saw a construction truck. But each time a truck disappeared from his view, he’d kick the back of my seat.

James was a good boy, just not for me.

As my office became a refuge and I accepted a patient who would eventually become James’ first friend, I began to wonder whether I was ever meant to be a mother. One evening, my infant daughter asleep on my shoulder and a glass of gin in my hand, I made a suggestion to my husband Bruce. Maybe I was better off, and James was better off, and the community would be better off, with me as a psychologist rather than as a mother.

A parent-ectomy. That’s what Bruno Bettelheim proposed in his 1967 book, The Empty Fortress, a book my parents might have read if I’d had autism. Early professionals observed that mothers whose children had autism were cold and distant: Refrigerator Mothers. But sometimes it feels better to focus on doing right by your child, than to interact with him. Contemporary studies refer to “parental stress” and investigate the effects of having a child with autism on the parents.

Instead of condemning me for my cold-hearted suggestion, Bruce appealed to my sense of reason. “Think of your favorite families you’ve worked with, your favorite adults with autism,” he suggested. “What did they all have in common? Good psychologists, or good parents?”

Kids in our town had some choices when it came to psychologists. But James had only one mother.

Around this time, I came across a newspaper article. Researchers at the Yale Child Study Center, my old stomping ground, found that administering oxytocin, “the love hormone,” led to activation in the brain’s social regions in a small sample with mild autism. I wondered where I could get some oxytocin for James, and then flagellated myself for wondering.

James needed a mother’s love, and I was giving him everything but that.

I stopped reading about autism, and started reading about motherhood. I especially liked Erma Bombeck, who wrote, “A child needs your love most when he deserves it least.” At first I took my fondness for this quote as further evidence that I’d become a refrigerator mother, but later I realized how many kids it’s kept alive.

So James didn’t know how to connect with people. I did. It was time to show him how.

Neglecting to tell Bruce where I’d learned it, I pulled out the trusty “basket hold,” a form of restraint I’d used during my internship in a children’s psychiatric hospital. It was the only way to get ahold of James. You grab the child’s wrists, cross them in front of him, and pin his body in your lap with your legs crossed over his legs and his head under your chin. It’s a hug you can’t refuse.

As I held James I would say things like, “I know you’re mad because your toy broke. No biting, though. That hurts me. You’re my boy. Mommy loves you no matter what.”

I was talking to myself, more than James.

Over time, I didn’t have to hold James so tight to keep him near me. When he was really upset, he’d often give up his struggles and sob on my shoulder. Then I really felt like his mother. 

One day after a basket hold I kissed James wetly on the cheek, and he immediately wiped it off. I decided to ask him about it. How did I know why he did it?

“Did you wipe that kiss off?”

“No,” James said, still rubbing.

“Well, what are you doing?” I asked.

“Rubbing it in. That way it makes you love me more.”

Now at this point, James had his pronouns reversed. So, he probably meant, “It makes me love youmore.” But who cares what direction he was heading? The fact that the word “love” was in his vocabulary suggested I was on the right track.

Author’s Note: James still struggles with the stresses of everyday life, and our family struggles along with him. But I don’t dwell on the word “autism” as much as I did when I started writing this piece. Instead, I focus on James’ love of guitar and flag football, and on his strong relationships with his family, neighbors, teachers, and friends. I’m proud to say he’s the only member of our family who’s consistently described as “sweet.”

Bio: Lynn Adams is now a full-time wife and mother in New Orleans. Her work has appeared on Salon, Brain, Child, and The Mid, as well as in the anthology, It’s Really 10 Months: Special Delivery. Find more at www.lynnadamsphd.com.